Sundowner’s Syndrome is the name given to an ailment that causes symptoms of confusion after “sundown.” These symptoms appear in people who suffer from Alzheimer’s Disease or other forms of dementia. Not all patients who suffer from dementia or Alzheimer’s exhibit Sundowner’s symptoms, however. Conversely, some people exhibit symptoms of dementia all day which grow worse in the late afternoon and evening, while others may exhibit no symptoms at all until the sun goes down.
Sundowner’s Syndrome largely remains a mystery to medical science, although there are several theories about why these symptoms begin at night. More and more studies are being conducted to try to determine the exact cause.
In the meantime, some doctors believe it’s an accumulation of all of the sensory stimulation from the day which begins to overwhelm and cause stress. Some speculate that Sundowner’s Syndrome is caused by hormonal imbalances that occur at night. Still others believe that the onset of symptoms at night is due to simple fatigue, while some believe it has to do with the anxiety caused by the inability to see as well in the dark.
The theory that the symptoms have something to do with darkness has been supported by studies where the symptoms subside within an hour of the return of daylight. There is some evidence that nursing facility patients show an increase in Sundowner’s symptoms during winter, which may suggest a correlation with Seasonal Affective Disorder (SAD). SAD is believed to cause depression in the winter due to the shorter periods of sunlight, and it affects people of all ages.
Alzheimer’s Disease and Dementia
There are actually at least 70 different conditions that cause similar symptoms of confusion and loss of mental capacity, usually in the elderly. Alzheimer’s Disease is only one form of dementia. All types of dementia generally begin as a subtle loss of memory, which may barely be noticeable since everyone struggles somewhat with memory. However, when the symptoms worsen gradually over time, dementia is usually the culprit. While it’s normal to forget where you put your house keys, for example, it isn’t normal to forget your street address, at least not for more than a few seconds.
Dementia can affect a person’s ability to logically judge circumstances, which means they’re no longer able to safely care for themselves. Studies have shown that people diagnosed with Alzheimer’s Disease generally live from one to 20 years after diagnosis, with the average person living just eight years with the disease. It is one of the leading causes of death among the elderly. It’s estimated that as many as four million Americans have Alzheimer’s Disease, and this doesn’t include the other forms of dementia.
Just as the causes of Sundowner’s Syndrome are largely a mystery, the same is true for Alzheimer’s and dementia. The symptoms are believed to be a result of neurons in the brain that stop working, and autopsies on people with Alzheimer’s show abnormal brain cells. Some forms of dementia are believed to be genetic, while others appear to have no genetic link whatsoever.
Strokes, Parkinson’s Disease, and Huntington’s Disease put a person more at risk for dementia. In advanced forms of Parkinson’s Disease, dementia is almost inevitable and is called “Parkinson’s-related dementia.”
413 replies on “Sundowner’s Syndrome”
My father-in-law had knee replacement surgery this week and at night he becomes agitated and they have to restrain him. This has now happened for the second night in a row. He was suppose to be released today but has to stay in. I am staying with him tonight. The doctors and nurses are saying this is from him having surgery and coming off of the anesthesia and gradually taking him off the pain medications he is on. He does not remember doing these things the next day and it upsets him. When I first heard that he was doing this I thought of Sun Down Syndrome. Am I right in thinking this or could it just be a reaction to the surgery, anesthesia, and medications?
Sundowners often comes on after a stay in the hospital. What kind of pain meds was he on? Did he have any dementia before going into the hospital? I have known many with knee surgery, and not had this experience. Do not take him home until THEY have him back leveled on meds. If there is a reaction , find out what it is to, cause you don’t want to go through this again. My sister had a violent reaction to demeroll, (spelling) , she would take you out on it, she was allergic to it. You have to know what he is reacting to. If they try to release him tomorrow , you say no.. I am not qualified to handle this situation, what is plan B. I REFUSED, to take my sister home, she was crying uncontrollably, and MAD, MAD , MAD. She was in pain, and turned out her pain meds had valuim in it, she was highly allergic to that. It was the meds. Change pain meds, and stablize before you go home. Ask questions, and get answers. Ask for a print out of all meds he is on. Your dad is having moments of not being lucid, get a MEDICAL POWER OF ATTORNEY while you are in the hospital, patients assistance can help. So , if they say they cant give you one, stand on the POA, AND them restraining him is proof he is having moments of incompetinents. (spelling it is late, and I am tired.) Send another note if you have questions. LYNDA
I was just reading your statement requarding your sister yelling out well my mother has been doing it for months so is on so many meds I can not pin point which one if making her yell
Hi Rose, has any of your moms meds changed before she started yelling out? Does your mom have any form of dementia or head injury? It could be Sundowners & not meds. Take notes of what time of day its happening & what’s she’s saying. As well as her activity through out the day (if she’s busy during the day & the yelling happens that night vs not busy/more relaxed & everything may be little calmer.) At some point in time a neurologist may ask for information & the notes could help solve the problem sooner. Mary
My grandma is 82 she has been very forgetful here lately.. but she had to get her appendix removed and after that it was downhill. She went home couldn’t breath nurse came and checked on her she’s back in the hospital right now her vitals are good but last night she was trying to rip out her I.v.s and slapping the nurses what do u think caused this and should she just be sent home?
I’m the caretaker of a 79 year old man. He haS been diagnosed with Parkinson’s,dementia and sun downers. I have been real close to him for the past 6 years. The last 2 and a half years we have lived together. He has had a cancerous lobe removed from his lung. He was the. Diagnosed with prostate cancer. As I look back the past 7 months I know now you hat it did not hit him suddenly when it all began. They ran every test there is to determine if he had heart attack or stroke. That’s what I thought happened. But I think stress had brought on it being worse. An incident had happened between him and one of his daughters. He was very stressed out for two days and he had a spell that lasted for 40 minutes which seemed like a lifetime. I was in the kitchen cooking dinner and he went to the kitchen table pulled out a chair and started to pull down his pants. It startled me. I asked him was he ok and all he could do was look at me with a child like smile on his face and with every question I asked he replied with giggles. I kept asking him was he in pain was he numb anywhere did he have a headache all he would do was smile and giggle. And he has t been the same since. Did the stress bring out the demesia worsening it. Is that medically possible? This was on June 20 when it happened and now he has full blown demesia,sun downers and Parkinson’s disease. It’s horrible disease to watch someone u love dearly suffer from I watched my momma pass with cancer my husband was a vegetable for a little over two years but this disease is a horrible way to end life. I have never been around anyone with demesia or sun downers or anything related to the disease. It is so heart breaking I can’t hardly bare it. But I will continue to care for him til the day God takes either of us. I pray that he never ever gets to the point to where he would have to go to a nursing home. This is so hard to do. If it wasn’t for my son being here for me when ever I need him I don’t know what I would do. His kids don’t ever come around and visit with him. They don’t call him. But all he needs is me and my wonderful son Tony. We will always be here for him no matter what. I pray that one day they find a cure for this horrible horrible disease. Thanks to whoever reads this I had to talk about it with someone. #dimensiasux
my Aunt just passed she was 99 she first got this in her 70 and it was so hard to deal with miss her but no she is in a beter place and no more suffering she started slowly like you say at night then each day got worse lived like that for years had to put her in a home as she had no kids and could not handle her but they were so good to her i wish thee was a cure for this i really do thanks for the this i have read a lot and understand more what she was going through
The same thing was happening with my father after an interaction with Ambien and the anesthesia. After leaving the hospital it continued. He was also hallucinating. The doctors thought it was alzheimer’s.
It ended up being a sleeping disorder. I figured it out myself by watching him. He would have episodes of confusion, but they were only when he was waking up.
It is called REM Sleep Behavior Disorder. There are other disorders that effect people when they are going to sleep instead of waking up. I urge everyone to look into this with a sleep specialist before assuming they have dementia.
Check out Lewy Body Dementia. They get worse when treated with certain meds. They have REM Slleep issues.
My father Inlaw was fine if he received enough sleep. Every time he ended up in the hospital he came home more confused. They were giving him meds strictly forbidden with Lewy Body. We didn’t know he had it.
We wish someone would have told us about Lewy Body. My father Inlaw could have gotten better treatment if we would have known.
Lewy Body Demential patients can be good for months…. they only seem confused when they are sick, tired, or in a new situation.
As they progress their REM sleep issues will tip their world upside down without treatment.
Thank you! Sounds exactly like what my mom is going thru.
My husband was like that post op from removal of his lung due to cancer 2/4/2011. He is still like that…confused, verbally abusive, agitated , miserable, attacking everyone in the family, verbally threatening everyone but will not accept it is a health issue it is the rest of us so he will not speak to his doctor about this. He was on pain meds post op and is still on them
my ex father-in-law is forgetting things he says in the afternoon and gets angry at himself and me when he does not remember. he is 95 and all alone except for me. I am so worried about him. he lives alone and does ok but is going downhill quickly.
My mother does not have dementia, however is aged. She would bat crazy after surgery…the anesthesia does this especially to elders. It took her about two weeks before she returned to normal. It was scary to see.
She was paranoid, cried, accused us, and had no memory during the day of her prior behavior. So, I wouldn’t worry about it just yet…it appears to be very normal to get “demented” for awhile after surgery.
What did you do to get her to normal?. My mother is 90, and got her tooth pulled. Last 3 weeks she is confused, forgetful and acting scary ????.. She absolutely normal and cheerful before the tooth extraction …
Hello, I am in a downward spiral. Feb 25, 2015 my mother fell at home dislocated her shoulder broke the ball. Her health is so bad COPD and several other things Cyst on the half of pancreas that is left and an abdominal annurisum to name a few. Short sleep to put her shoulder back in place and hold the break together. Fall in the hospital where she hit her head and received stitches she is now in nursing home rehab, but truthfully will be permanent long term. She has been in NH March 2 it has been a roller coaster ride. two or three days really ill quiet sleeps and had her eyes closed most of the time saying Help me Help me almost in a prayer. Then it is like she comes up out of this hole and does better for a day or two. Then sundowners comes on and she is scared and doesn’t know why and I am the only one that makes her feel safe. She has gotten violent with me and dad and the nursing staff. Fighting them scratched me which broke my heart. My first marriage I was physically and verablly abused and can’t take someone being mean to me and I’ve walked away a time or two. But never stay away more than a day or so. She had morphine and anesthesia. This has happen this year and in January of 2010 when they removed 51% of her pancreas and spline (the sundowners). Before when she was at home she would nap after dinner then when she would wake up an hour or two later she thought it was the next day. She would get aggiated with dad and could not convenience her it was the same day.
My biggest problem is we know she needs to stay in the home for all safety sake Dad and I both agree, but my brother, his wife and their daughter think differently. Even one of mom’s friends thinks she should be able to be at home. She has tried to stab my dad hit him with an iron skillet to name some of the times. I am beating myself up because I know this the right place for her and they are acting like I am a bad daughter. They never see her and I go every day and dad goes most. She is mean to him and he stays away when she hurts his feelings. Nurses and Doctors just blow me off about the dementia like it is no big deal, but it is. Her mother had dementia brought on by surgeries back to back and morphine too. My mom is following in her foot steps. I guess I am just asking from someone who has been there am I doing the right thing. Thank you for you help. God bless.
One other thought has anyone else experience these waves of good, sick/tired/sleeping, then scared sundowners like on a weekly basis. I am getting an ulcer from this.
My mother had knee replacement and had a horrible time with the meds! They had her on Oxycodone and she turned into HItler–angry, paranoid and violent. Opposite of her personality. Scared me to death–the med was the culprit–the next knee replacement we told them she was allergic to that stuff and she did better–still some trouble from anesthesia, but nowhere near as pad. The doctors are quick to use these meds without consideration to age–and that’s a problem!
We are starting to experience these things with my mom. She is 75 – COPD and Congestive Heart Failure as well as a few other things. She had a fall 12 days ago. It does appear that her heath was declining and she was having trouble with walking loss of muscle etc. She was in hospital for 11 days and we got no where. One doctor finally discovered she was on two meds for the same thing and that was a contributor. She has been in rehab for 3 days now – The first day was great. In and out since then. I realized last night that she has something that sounds like Sundowners. I just cant see her going home – not safely anyway. It is so very difficult!
You’re not a bad daughter, and you’ve experienced abuse. You’re doing the right thing. My mother killed herself two yrs ago after years of full body pain, malnutrition, depression, and a childhood full of abuse, but also she started getting weird when it would get dark outside. Sad, paranoid, grumpy. Very hard to deal with. You’re not alone.
My mom just had a stroke a few days before Christmas. She’s having these up and down behaviors DAILY. I am ready to lose my mind. I am having to deal with this alone… God Help Me.
Call hospice. Maybe they can support you and give some relief. They’ve helped me. You can always ‘undo’ hospice. Their compassion and comfort meds have helped along with my hiring some caretakers for a break for me. I also was losing my mind and I have a young family and cannot ‘afford’ to lose my mind. Good luck. God bless
How about daily/nightly? Wearing me out quickly. Need to pay for care for my mom or I will go mad or develop an illness soon.
I really feel for you right now. I’ve had my mom for over a year, though for five mos. I got a break and put her in a private home, big mistake. I’ve had her back now for nearly a month. Nights are bad, she wakes up and thinks I have alligators in my house and last night we had killers in the house. Not sure if the bad dreams are part of sundowners or not but she has mass confusion after dinner. Never doubt your decision, it’s best for your dad and family, you may feel guilty that’s normal but trust me if your happy with her care then she’s in ther Right place. Right now we are currently waiting for a new memory care to open, sometime in July. Bi hope I can last that long. Good luck to you.
I hope the new memory care center is open soon and you can find some relief.
Sherry Dailey: Im wondering what you mean by “big mistake’.. do you mean big mistake putting her in the home for 5 months or big mistake getting her back home?… Im in a similar situation moved in with my 92 year old mother to help care and I’m going insane and turning into a screaming ranting person trying to deal with her mood swings telling me I’m a terrible daughter etc.. going thru menopause does not help either…
You are doing the right thing. Don’t let anyone tell you differently. Some can be cared for at home, others cannot. If she is being violent, she needs constant care. You and your dad cannot provide this care without assistance. I am a professional personal caregiver, I assist an elderly gentleman during the night. We don’t see symptoms everynight, but at least 1 time per week, I am sure it will progress eventually. In the meantime, try bringing her things that she likes to have, snacks, stuffed animals, something soft, we use a machine that plays soft relaxing tones. On the bad nights, it makes a world of a difference. It helps him to relax and then accept the help. Keep your head up and smile. 🙂
My 94 year old granddad has dementia and Sun downers, he is usually quiet during the day but as soon as he goes to bed at 9pm, he starts rambling incoherently and yelling that he’s in pain. .which Dr said no tests showing any reason 4 him to cry out in pain. .he never lets us sleep at night, he constantly makes up fake situations at night to get us in his room. .even then he acts like we aren’t there, we fix whatever’s bothering him but he still just rambles over and over on the same issues. .help! Whole house is exhausted !
youre smart nd wise, typing hurts my shoulder, but a quick reply, most of my hubbies family are idiots and ignorant. and selfish. focus on those who UNDERSTAND and stay away from others that are not supportive. far away. it will kill you. you have a full plate. keep making the best decisions for the one in pain to be safe. no one elses opinion matters. and if you cant get what you need from one doc, go to another and another. they are out there.
Yes keep your head up and keep praying, my mother is starting to change a lot,my family are blaming me for her mood swings, It hurts so much the things they say about me over the telephone to my mother, I try to help as much as I can because she is 93 yrs old,I tried to be nice to all of my family, for them to talk about like that is a shame before God, But you can join me in praying for those disrespect us, that makes us a better person,keep during what you are during &God will bless you.
I can relate to your comment about family. My daughter always had a special relationship with my mother. Not long after mother dementia was diagnosed my daughter attempted to talk with mom about her day and mom was not at all attentive or behaved as she used to. So, my daughter accused me of being with mom and ruining her relationship with her grandmother for good and wanted to know what I had said to her grandmother. I said nothing about her to her grandmother. My daughter has not spoken to me since.
Dear Lisa
You are doing the right thing, not just for your mother, but for your Dad and your self. I take care of my Uncle and he gets mean at times. My uncle has Dementia. You have to do the best thing not only for your moms well being, but also for your dad and yourself. Most family members are not around to see what is going on, if they were, they would understand how hard it is.
Stan
I always tell my patients family when they are concerned about the decision that they made concerning nursing homes to do what you would like to have done for themselves in the same situation, A good nursing home is a positive place for a confused patient. It provides a regular schedule and activities that are customized for the individual. The staff is familiar with various illnesses…and behaviors and do not take things personally as a family member would. It’s nice to know they are safe and it’s nice to have the at home family relax at home knowing they are safe and cared for 24 hours. It is important to visit often for both you and your family member.
You should take her home. She needs to feel loved, it would help. Also the medication that is suppose to ease the agitation is actually sometimes the ones that are really causing it (anxiety meds/ sleeping pills) another reason could be her liver, patients who show aggression tend to have a liver issue. Hope this helps. God bless.
We moved my 97 yo mother in with us two years ago. Unfortunately she passed away at 99 2 mos ago. When she first moved in with us she was diagnosed with sundowner syndrome. She was just fine during the day but around 3 in the afternoon she would get terribly confused, agitated, repeated herself nonstop, was disoriented about where she was etc. Her physicians prescribed Seroquel (made it worse), Ativan (made it worse), other antipsychotics and antidepressants (did NOT help) and even Haldol (a total nightmare). Her physicians said she had dementia but I was skeptical. I finally got a consultation with a geriatric psychiatrist while she was hospitalized with aspiration pneumonia. He said she definitely had sundowners and would NOT diagnose it as dementia (he claimed they were different despite what I’d read) He put her on GABAPENTIN (which is used for neuralgia and pain. He said many psychiatrists found it to be very effective with sundowners. It was a LIFESAVER for us and my mother. They started with 200mgm at 3pm and 300mgm at bedtime. After about a week she would get just a tad confused BUT she slept through the night. (Before I was getting up literally every 2-3 hrs with her and had to try to orient her (which was pretty much impossible). When she got home her internal medicine physician said “it’s NOT for sundowners but for neuralgia.” I had him call the psychiatrist who said it is often used as an “off label” tx for sundowners and it was his and his colleagues drug of choice for sundowners. It may not work for you but I just wish we had been given the prescription two years before because EVERYONE noticed a DRAMATIC difference in her cognizance. None of her other specialists (hematologist, rheumatologist) had heard of the usage of Gabapentin for sundowners. I had to convince everyone (even the nurses and hospitalist) that it was an off label usage for sundowners. When she was hospitalized and at a rehab center when she cracked two ribs), the staff would omit giving her the Gabapentin because they insisted it was only used for neuralgia and pain) so each time I would have to argue that it WAS being used for sundowners. If she’d miss a dose (even by a few hours), her disorientation and agitation would return. HOPE this helps. You may have to argue with his internal medicine doc but as I said, it was like a gift from God and we got our mother back.
Thank you so much for your advice. I am currently sitting in hospital watching my mom sleep. She had another TIA last night. This is the 4th one in 3 years. She is 82 and I am currently staying with her at home. Tonight she was lost. Saying things that made no sense.. Reading this and many other stories have brought her behaviors into a new light. I definitely will look into the Gabapentin.. I pray every day yo have more patience. I know getting old is not necessarily th GOLDEN YEARS. GOD BLESS THE LOVING AND KIND CAREGIVERS. AMEN
Post surgery confusion is common in healthy individuals and seems to be more so in elderly. If your father-in-law already had a clinical diagnosis of dementia, it is not a surprise that he is experiencing these symptoms.
They should be noted as a precautionary in the doctor’s pre-surgery discussion with the caretaker/family, but unfortunately is typically not understood by the general medical providers. Being out of one’s own environment can trigger these symptoms. Anesthesia fog seems to last much longer for dementia patients. Loss of cognitive ability post surgery is common and may or may not be recovered to some if any degree. All of these are risk factors of anesthesia and dementia patients.
Bringing familiar objects to the hospital can be helpful & family staying to soothe and orient them during the night can also decrease agitation. A low dose of anti-anxiety medication can also be helpful.
We found when mother had hip replacement surgery that her disorientation was the underlying cause of agitation and aggression, also aggravated by a UTI, which the hospital staff totally dismissed as being post surgery bloody urine. I had to demand UTI testing! Often moving swiftly to have the more common issues investigated is essential in not requiring another move to a rehab facility as determined by insurance limitations.
Check the obvious first. Understand the risks going in, mainly that any anesthesia may cause a serious loss of cognitive ability that may or may not be recovered. Prepare to aid the patient in orientation during their stay in any unfamiliar surroundings with familiar things from home and someone familiar with them, especially at night. Advocate for a post surgery plan that avoids a second transfer to another location if at all possible, as that will very likely worsen confusion, agitation and impeded recovery from the surgery.
We have determined that mother will not have any more surgeries. Her ‘ quality of life’ is such that further impairment as we experienced with the previous surgery and not fully regained would leave her in a likely permanent stupor, unable to engage in life at all. She signed a living will and we believe her intent at that time, when she called for no extraneous measures be taken to preserve her life would include surgeries that could leave her in a vegetative state.
You are RIGHT. My father has the same symptoms. And is very unsettling and even scary when your own father is acting so crazy and has to be restrained. That has happened to me and at least two or three times.
When he was extremely agitated I put my iPhone earbuds in his ears and played him some beautiful harmonic music, singing and that helped a lot but he did not even remember the music or any of it the next morning.
My grandfather had dementia, every time he had surgery the dementia got extremely worse.
I’m sorry your family is experiencing this behavior. My FIL did similar after his tkr. Fortunately, good doctor patiently explained same thing. The behavior lessened and stopped by time released for rehab center.
My FIL had moments of remembering his hallucinations and that sort of helped with brining him back to the present. Take care
[…] Sundowners Syndrome – Symptoms of confusion after sundown |Sundowner’s Syndrome is the name given to an ailment that causes symptoms of confusion after sundown. These symptoms appear in people who suffer from … Sundowner’s Syndrome largely remains a mystery to medical science, although there are several theories about why these symptoms begin at night. More and more studies… […]
My 94 year old mom who lives with us began complaining of left side pains getting in an out of bed with screams like she is dying. Xrays and doctor exam revealed nothing. One night she was screaming because she thought she was falling out of bed, but was not. Last night screams got worse every 30 minutes for 4 hours and then stopped. She could not remember any of it. Also wet herself in bed for first time in one year. We think she is screaming in her sleep. It is keeping entire household from sleeping, because screams are very loud like she is dying. Do not know what to do. Going to try having her sleep sitting in a chair which she did for several years when living on her own. If sundowners syndrome, I wonder if leaving a light on all night will help.
Hi Jimmy, I can hear the stress. If it is Sundowners, and it does sound like it, it will not go away in a chair. They are NIGHT TERRORS. She can not help it. They are worse than night mares. She may believe someone is trying to kill her, or stabbed her, falling off a building. Then when you walk in, the mind jumps, and she has no recollection of the sounds she has made. See a neurologist for medicine. It is not depression, it is hallucinations. But, you need to see a doctor for the actual diagnosis. She can’t help it, she is facing terrors. Help her. Read some of the old post, and see what meds might help.
I agree. See a sleep specialist to look at REM Sleep Behavior Disorder
Has your mother had shingles from earlier chicken pox? Shingles after-pain will cause them to scream. There is a drug for the nerve ending pain of shingles that will immediately stop that. My 97 year old mother had terrible pain off and on to her side and under rib cage for 3 years until I told a PA and she assigned “Gabapentin” and it stopped the pain the day it was given to her. Regular drugs like Tramadol and Hydrocodone didn’t do anything for her pain-wise.
My 96yo old mother had the same issues. She lived with us and we were getting up every 2-3 hrs. She was diagnosed with dementia by her internist and given everything from Ativan, Seroquel, antidepressant and antipsychotics. Her neurologist gave her Haldol (which was TOTAL nightmare). Finally I got a geriatric pscyh consult. He prescribed Gabapentin 200mgm at 3pm and 300mgm at bedtime. Within a week she was her old self and sleeping through the night (which meant WE could get some sleep as well. It is an “off label” usage for Gabapentin and nearly every doctor (including her internist, rheumatologist and hematologist) argued that it was for pain and neuralgia. I had to convince each of them that it was prescribed by a geriatric psychiatrist (a well lauded I might add geriatric psychiatrist). After her internist saw the change in my mother’s behavior he said he was going to try it on other patients that he had with sundowners. My dear mother passed away a few months ago but we had the sharp, sweet person that she was back with us after the Gabapentin. It was a life saver for both my mother and my family. HOPE that helps.
I stay with my 82 year old uncle, he does this at night mostly, sometimes he also exhibits the “oh my god call 911 I’m dying, my life depends on it please ” and one night we did. The emts said he had a better heart rate and blood oressure and breathing percentage than I did, because I was worried to death. He also gets very confused at night time sometimes not recognizing his own house. During the day however he talks on the telephone to several people and talks about things that has happened years ago up until what has happened today. The doctors say that he had a light stroke so we thought he might have vascular dementia but it’s only really bad at night.
He is likely confabulating to some degree in his phone conversations during the day. Old memories are the last to go generally in dementia & when pieces start to fade (such as time orientation for those memories), the patient will adjust by filling in the lost memory with ‘ facts’ that may or may not be true to make the recall make sense. This recalling activity is comforting for the patient, as their loss of independence and need for assistance in daily decision making becomes more evident.
His nighttime is more insightful into his level of confusion and an indication that he needs support in having soothing structured evenings, limited stimulations including TV, and perhaps medication to assist in decreasing anxiety (in small doses to begin). Check medications given for side effects that may be contributing & do not allow the administration of ariscept or Namenda, as they are contraindicated for non-Alzheimers dementia, especially vascular dementia, and largely not effective in Alzheimer’s patients, something not generally revealed by doctors when the meds are introduced. The side-effects (common & severe) are often ignored, even thought prescribing info sets recommendations of discontinuing the medication if particular side effects present!
Focus on vascular health to improve his chances of maintaining what cognitive functioning he has and consider supplementing with magnesium to act as a healthy anti-inflammatory which can lessen his symptoms. Most people are magnesium deficient.
This is like my husband, with Frontal Lobe Dementia. He says call 911, I’m dying also. Had him taken several times this last two months. Think that this IS sundowner’s. Last night I was able to get him calmer, as he had slapped me once before. I laid down with him and said he was having a panic attack. In a few minutes he repeated that he had a panic attack, and that he was fine “now”….Has new neurologist and new meds; moving to nursing center this next week for moderating of meds.
My mother now experiencing. Leaving lights on helps and doctor prescribed anti agitation medicine, which calms her and helps her sleep. She’s up every two to three hours. Started with the phantom pain in side. That gone, but night terrors like a light switch when the sun goes down. During the day, she’s calm and placid. She has Alzheimer’s.
Check her for UTI.. or kidney involvement first
My father who is 94 and has exhibited NO previous symptoms of Alzheimer’s or dementia is recovering in the hospital from major back surgery (two vertebrae broken in a fall and successfully repaired) and is displaying classic Sundowner’s symptoms. I am finding very little information on Sundowner’s in persons who do not already have dementia and have only started displaying symptoms after hospitalization. Can anyone out there give some help?
Hi Bob, Yes , this often comes on after surgery if they are older. Maybe.. a small TIA (tiny stroke) happens in surgery, TIA’s are often missed. My mom used to have them, my sister and I were the only ones who could tell she had had one. There is no major sign. they don’t always show up on CT’s. I don’t know exactly why, but I know they happen. If you read on her on OLDER POST, you might find someone who had back surgery, or heart surgery, and now have this. However, usually once they have it, I have not read where it goes away. There are some ideas on here, in how to live with it. We are here if you have questions. I am so sorry that your family is having to go through this. LYNDA
What to Do for a Person You Suspect of Sundowning
Possessing a clear understanding of what a person is going through will go a long way to preparing your mind and body for a healthy response. Gerontologists recommend staying calm and reassuring to convey a sense of peace and tranquility. Never confront a sundowner, accuse them of being irrational or try to convince them that the feelings they’re experiencing aren’t real. Suggest a soothing drink or a nap to help restore balance. Close drapes or shades late in the day, and divert attention from clocks and watches. Involve the sundowner in a favorite structured activity. Additionally, make certain the sundowner’s basic needs — like hunger, thirst and hygiene — are being met to reduce stress. When all therapies have been exhausted, turn to oral medicines, patches and other chemical therapies being fast tracked by medical researchers. At the most extreme, antipsychotic drugs and/or sedation may be prescribed to help sundowners find peace from the storms raging in their brains.
My nearly 91 yo father has been experiencing anxiety in the late afternoons and through the night. He can’t stay asleep, hands shake, won’t talk very much, eating less and less. He takes aricept and many other meds for other health conditions, primarily heart and diabetes related.
He’s attached to an alarm in his bed so he can’t get up on his own due to his unstable gait.
He absolutely hates that alarm and often gets up on his own anyway! He wants to be more independent! Now he’s being given Adivan by injection PRN. He also takes Remeron for depression. Last night, he threatened to hit a nurse. This is not like him! He has always suffered some depression during winter (SAD) because he was limited in what he was able to do. He’s been in a nursing home for the past four years. This has been a noticeable decline recently. Any suggestions?
See a neurologist to rule out Parkinson’s. Also a sleep specialist
Thank you to all who offered me adivce on this website. It was a mind and emotional support system that I didn’t have anywhere else. My dad passed away on May 10th. He had suffered from aspiration pneumonia and once he got into the hospital he never improved. We removed him from the hospital and he died in his home with his care giver 3 days later. It was a blessing. I wish all of you good luck with your situations. And Bob… you just posted regarding your dad getting Sundowner symptoms after surgery…. would you know if he had had any sort of Morphine during his hospital stay??? We are seeing incresed suspicious instances of anesthesia and morphine put together in the surgery situations and, bam! people wake up with Sundowners. I don’t think there is any professional research or even recognition of the situation, but my husband and I are finding the 2 together often and then the result is Sundowners. I would think at some point, someone would begin to be suspicious. However, most of the medical people we dealt with were not especially curious about anything. We often found the Dr.’s to be both arrogant and stupid and I got more help from the folks on this website than anywhere else. I know that sounds really pathetic, but it is true. I found out about the 36Hr. book, the drug Haldol, the other possible drugs, all on this site. Anyway, thank you all again. Linda T
Linda – my Dad was on morphine for a few days after the surgery. They replaced that with oxycodone combined with Tylenol for another few days, and Haldol at night for sleep. Most recently his pneumonia is not getting better (or worse) and he is having trouble swallowing food so he is being tube fed and has been placed back on the morphine pump with like a 12-minute timer.
Bob
my 82 year old father was diagnosed with mild dementia about 1 1/2 years ago. he was not bad until he had 2 teeth pulled. Next couple days he was delusional and not staying awake. now in hospital and Nurse says Sudowner. I do not beleive in coincidences. Something happened to him during procedure.
Linda, my father is 83 he had been taking oxycodone 4 times a day for about 6 months for his neck pain. Before that he had never taken anything stronger than a Goody powder. 2 weeks ago he fell and broke his hip (no wonder taking 4 oxycodones a day) he had surgery and came out a psycotic mess. He was given morophine after surgery then percocet, hydrocodone, and God knows what all . i know of seizure meds, ativan and even nerve meds. Its going on 2 weeks and he is in ICU on a respirator and feeding tube. His lungs are having to be cleared everyday from all the flem. But they have changed him to Fentyl now he is starting to come out of the medicine induced accoma and has a look in his eyes like he doesnt know any of his family. He doesnt even squeeze our hand when we ask him to while holding it. He wont even let my mom touch or pick at him like he used to love her doing. Im scared he isnt going to come out of this after taking the oxycodone for so long then the anthestia mixture.
I am so pleased that i found this website today! I have been feeling very depressed and guilty, because I did not understand what was happening to my dad.
My father was diagnosed with Parkinson’s over 11 years ago, and 4 and a half years ago, my parents moved in with us, as my mom could not drive a car, and my dad was not allowed to do so anymore. Looking back, I realise that my dad already had sundowners, although it was not so bad yet, just bad dreams and hallucinations, with very little sleep. Being sleepless was and is normal for my dad, as he has always slept very little.
I had better explain my dad a bit more, than maybe you will understand a bit better why I feel the way that I do. My dad has always been the “BOSS” of the house, his word was law, and even my mother had no right to express any thoughts, or ideas or anything. She was not even allowed to choose the colour floor tiles she wanted in her kitchen! My mom raised five children, worked basically like a slave all her married life (in the house) and had to do everything for my dad. He could be sitting in the kitchen, having supper, just in front of the fridge, and if he wanted something, he gave the order, and she had to stop eating, get up, and take it out of the fridge which was a foot behind him. He mistreated my older brother – both mentally and physically – basically destroying my brother’s self image – because he was a soft and gentle person like my mother – he was supposed to be tough and hard like a man!! I am the eldest of five, and the only daughter, and I can remember how my poor brother was treated. My mother would try to intervene, and it just made it worse. He was never physically violent to wards to my mother, but was verbally abusive if he did not get his way. My three younger brothers managed to get away without too much mental damage, as he concentrated on his oldest boy.
As the years went by, I got married to a wonderful man, soft and gentle, the total opposite to my father. He has also caused that I am very defensive, and will not keep my mouth shut if I feel that I am being verbally attacked, which fortunately for me, my husband understands.
Anyway, to cut a long story short, just shortly after my parents moved in, they were both diagnosed with cancer, my mother with colon cancer and my dad with prostrate cancer. My mother had a portion of her colon removed, and started chemo, but had to stop as it was affecting her heart badly. My dad had an orchidectomy. My parents were very young at this stage, just 70 and 71 respectively. My parents moved into their cottage on our property, and I would go in every day to check on them, take them shopping, library, etc. I worked from home, and according to my dad, I was available at all times for them, so he could not care whether I was in the middle of a job, if he wanted something, I had to get up immediately and do what he wanted, there and then! It caused quite a few arguments! My mother was finally starting to fight back, and refusing to bow down to my dad all the time, but it was too late. All it caused was that my dad was just horribly confused by her reaction.
My dad was quite together, with only mild sundown syndrome symptoms at night. It all changed in October last year, when my mom was diagnosed with terminal cancer – colon, liver, lungs, spine and lymph system. The night after we told my dad what was happening, he started with very bad sundown syndrome – which in a way I understand, for it was a huge shock for him. But at the same time, in stead of being there for my mom, placing her first and supporting her as much as he could, he just gave up and became totally dependant on her. He also became both verbally and physically abusive towards her, and I had to seperate them. My husband and I moved them into our house, putting my dad in the main bedroom, and my mom in my daughter’s bedroom (she moved out so that we could do that). I was eventually totally exhausted, as I was nursing my mom day and night, and also having to try and keep my dad calm and contained. That stopped the day I caught him hitting her, because she would not get up and help him dress! My mother was the entire spill of our family life, and she was more than my mother – she was my best friend, my sister, my everything! I adored her! I love my dad, but not in the same way as I loved my mom. There was no way on this earth that I was going to allow my dad to mistreat my mother even more. We eventually hired nursing care, one fulltime at night to take care of my dad, I took care of my mom at night, and then a nurse’s aid during the day for both my mom and dad, while I tried to rest and carry on working. It was becoming extremely stressfull at home!
My mom eventually passed away on 28 February this year, and my dad has just completely regressed, showing all the symptoms that are discussed on the blogs here. We eventually had to let our night carer go, as he was gay and unfortunately my dad started saying that he was “fiddling” with him! We kept our day carer, and she has been an absolute treasure, helping to keep me sane! She works during the week, and we have just this weekend hired another nurse to take care of my dad on Saturdays and Sundays, while I take over at nights.
My dad is on various types of medications, including 3 different tranquilizers and 2 sleeping tablets at night. He complains of terrible pain in his left shoulder, but xrays do not show anything wrong. Since my mom’s death, my dad has been suffering from UTI’s, and is now on a permanent antibiotic. (he has a permanent catheter due to his prostrate cancer, he is unable to pass urine normally). He is constantly trying to get up, still does not sleep, in spite of all the medication, will insist of trying to walk, even without a walker, undresses himself at night, is verbally abusive, and last night, for the first time in a few months, tried to hit me!
I have had enough! I am wrong, I know, but I have not been able to mourn my mother, I am so angry at my dad, for once more, he placed himself first and made my mom’s last remaining days on this earth more hellish than it should have been! I am struggling to get him into a home, because they are not all equipped to take care of him, and there are huge waiting lists here in South Africa. Also my dad never wanted to listen to anyone about making provision for his old age, so all he has is the proceeds from the sale of his house and a tiny little government pension. He has given my brothers a huge part of the money he got for his house, and now so little is left that my husband and I are going to pay a lot towards frail care once I am able to get him into a home. I am stressed, exhausted, cannot forgive my dad! I also feel devastated that I feel this way, which just makes things worse.
Michelle,
I am very sorry to hear of the loss of your dear mom. She sounded like an angel leashed to a demon, sadly.
First of all, you are NOT wrong for having had enough and being mad at your dad. Please know this. There are limits to what we can do for our loved ones when they get to a certain stage (which in my opinion your dad is way past, and is lucky he got to stay with you as long as he did!). My dad also did the naked angry violent up at night blablabla stuff. Only a professional can really deal with these times, and sometimes it’s too much for them too. I understand the difficulty of placing your dad and finding a home for him. Violent men are the most difficult, since no one wants to take a chance on them. Too much liability, I guess. Same in the USA. There were times when I didn’t know where we were going to put him, since he got evicted from 2 homes. The only thing that got us through was the Lord. I was way in over my head and could only take one step at a time each day. Jesus was with me the whole time and took me through each step. I had to rely 100% on Him, and He came through, as He always has and will. Pray without ceasing, if you aren’t already. If you aren’t already working with consultants and professionals in the elder care arena, please ask around at the senior homes and alzheimer associations for referrals. They helped me in countless ways. I hope they can place him soon, that will be a lot better for you. May I ask how long he is expected to live, if they have given you a timeframe? You are not a bad person or daughter. You can stop the guilty feelings. Don’t even let them get a foothold!
Hi Tammy,
We have no time frame for my dad. He could live 3 weeks, 3 months, three years or 20 years! And the time lies in front of me like a long pitch black tunnel, with no end in sight. I am now at the stage of having a grownup toddler on my hands, who when he is in the full grips of SD, throws tantrums when he does not get his way. But at least when I had children, the tantrum stage disappeared as they grew up, and the situation just got better and better, and I also was stronger and physically better equipped to deal with it. I am n ot so strong with my dad, at least physically. My husband has had to step in help me, as for some reason my dad really respects him and loves him. My hubby and our nurses are the only ones who have not had to deal with the bad side of my dad, for he is always on his best behaviour with them. Someone from hospice said to me that I should count myself blessed, for my dad loves me so much that he can let go with me! If this is being blessed, than I do not want to know what cursed would mean!!!
After seeing and reading this site, I sat down yesterday and started searching for specialist homes who deal with patients like my dad. I have managed to find quite a few, of which 2 have a place available for him. It took me the whole day! I made an appointment with them for Friday, and will go and inspect them, and then make up my mind what we are going to do.
Thank you for your kind words, they made me feel better instantly. I realise now that the way I feel is because I am exhausted, both mentally and physically, and it is also part of the process of grieving for my mother.
Michelle,
Everything you are feeling fits your situation, a couple things you might not have thought of. When your dad was born, there was depression, WWII started, men had to be tough and mean they thought. Ladies Home Journal, told the wife to put in white carpets, and put the children to bed at 7, the moment the man came home. She was told to keep her husband happy, he worked. They both responded the way they were taught. Although it might not have been perfect, it was the way things were. We are talking over 70 years ago, here Slavery had only ended in his fathers life time. Big things changed in their life times. It is not easy to change with the times. We say we will, but when you are 50, you just listen to oldies.. well not all.. but you see where I am going. He is and She was who they were because of where they came from. Let that give you some understanding till a little forgiveness can find its way in.
You have done more than so many would even have tried to do. It is time to call in a team. Your back up troops, to care for your dad, if you can find a suitable place. If not call your brothers and have a TREATMENT TEAM MEETING. Put all the cards on the table and ask for advise, assign jobs. The young man , who your dad was so abusive to.. might be able to give mental support… you all have to remember that a treatment team is not EMOTIONALLY INVOLVED.. so since you don’t have one, you have to become that team. Try not to think when you are doing so in anger… get a sitter 24 hours before a team meeting.. so you have time to calm, get those boys who were not so hurt, to assist.. if it is the new century, they are part of the team,,, anyone not helping must want to step up and take him on full time.. each keep him a month.. or 2 weeks if a month is too long.. get a neurologist, to put him in a hospital to balance his meds, usually 3-30 days.. making sure he is on the right meds.. Once he is in a hospital, if you feel you are not qualified to care for him, tell the hospital, and have them assign him a social worker.. See how they do then..
You have done a good job… thornes to daisies.. my family had a very bad man , who severely abused his kids… when he was found in a Texas hospital on vent, the hospital had to find his family states away.. Each child did not want to pull the plug, although revenge could have taken over, their Christian hearts took over, and took compassion for man who should have died a terrible death.. With compassion and forgiveness, they asked them to do a brain scan to prove he was brain dead, they took another 72 hours to pray, and each to come to terms of forgiveness.. When their dad died, they had him brought home, buried him beside their mom, his first wife, and said … she always loved him, now he is nice, he had been baptisted in a church mannny years before, they prayed for his forgiveness of souls, and they let go.. these are children who now adults slept with guns by their beds their whole lives… You have done a good job.. forgive yourself for the guilt you feel.. Your mom did a good job, and it was your dad who made you the strong woman you are today , there must have been something he did good once.. focus on it.. you are a good daughter.. it is time to call in the troops. .. God bless..
Hi Lynda
Yes, I agree with you about the times in which my parents were born, making them who they are, but at the same time so many of my friends’ parents were born the same time, and their fathers were not like my dad. My husband’s father was even older than my dad, and he was amazing with his wife! She was a full time housewife, and he worked, but he still came home and helped her cook, and helped her clean up afterwards. When he retired, he took over the housework so that she could concentrate on her hobbies, such as needlework, sewing, etc. She was only too pleased, for her health was already suffering by then, and she HATED housework! He loved it!
I also agree with you that my dad made me the strong woman I am today – totally determined to never accept what my mom had to, and to NEVER treat any of my children the way my dad did!
The young man that you are talking about is now 51, and all my brothers are behind me, and support me as well as they can, but unfortunately none of them are in any position to take my dad for any length of time. My eldest brother is single, and unfortunately is crippled after an accident at work in which he broke 5 vertebrae in his neck. He is still able to walk, but will be in severe pain for the rest of his life. He is the only one who has been able to take my dad for a weekend, but I feel that it is unfair to saddle him with my dad for a longer period of time. Unfortunately we have been hit very hard with the latest economic depression that hit the world recently, and my two middle brothers are unable to keep my dad, as they are struggling to keep the pots filled and families fed. My youngest brother lives more than 3 hours away, and he comes through once a month and spends the weekend with us, to keep my dad company. My dad, of course, is on his best behaviour then! That makes me so mad! Unfortunately he cannot take my dad for any length of time, for his wife is in the same boat as I am with her mom, she has been nursing her mother for almost 20 years now. The old lady one day decided that she was not going to get up and do anything for herself anymore, and my poor sister-in-law has been doing everything for her since then. In fact all my brothers live more than an hour away from me, and rarely are able to come through and spend time with my dad. My eldest brother is in the police force, and works long and irregular hours, and that makes it even more difficult for him. I was the only person to able to help my parents, and I did it with all the love in my heart, especially for my mom! My dad has always been a selfcentered egotist, and as he got older, he just got worse! I was also the only one, apart from my youngest brother, that could talk to him and get him to moderate his behaviour.
I am going to inspect 2 places tomorrow, and hopefully I will be able to make a choice of the best place.
In many ways my dad was a good father and husband – we were always fed and clothed properly, educated to the point of graduating high school, and if any one of us ever fell into financial difficulties, he helped out as much as he could. He did not drink, and his whole salary package was handed to my mom each month, he never kept a penny for himself. He respected me, even though I never kept quiet and told him what I thought, and strangely enough he accepted it from me, but never from my mom or some of my brothers! But then again, my mom told me that he really wanted me when I was born, but never any of the others. He never mentally abused me, but I saw what was going on, and I really resented and hated it! I also quickly learned to not say too much, for he quickly would turn against the others and put them through hell, especially my mom and my eldest brother. I just could not and still cannot, accept and understand how he could behave the way he did. At the end of her life, my mom could not handle him around her anymore, and resented him terribly.
It will take time, I know, and eventually, I will forgive him, for he never did me any harm, apart from his SD episodes, and there he is not in control of himself.
In reading your story, I realize that there where people in far worse positions than we were. I am glad that you were able to forgive, and hopefully I will be able to do so before my dad passes away. Thank you for your kind words.
to any one out there who may be having a hard time findind a good assisted living home we have a great one in arizona for information you may call me at 928-566-4678 we are called home sweet home and that is how our residents are treated as if they are at home . we only take five residens at a time,so they get the care and attention that they need.
I feel for you. You have done your best and more. My father gets mad and sometimes mean to me, and very agitated, but fortunately if we get the tranquilizers into him before sundown it helps. My father was a great man before he got this Alzheimer’s. He started when his twin sister died, then his wife 6 months later, brother-in-law 6 months after that and then his last grandson (his first grandson died at 2).
Michelle,
Women run to some grief counseling and save yourself!! You are not wrong, crazy, or otherwise. You have a right to feel negatively towards your abusive father. Just because he never hit you all in younger years does not mean he wasn’t abusive.
You definitely need to mourn your Momma. Guilt is a useless emotion…..UNLESS it nudges or pushes you to change something in yourself. I will let your soul be your guide on that.
You have a lot on your plate. I would start with letting go of issues that are not yours
I am so sorry you had to go through all of this all your life. One thing I can say is try to forgive your dad and help him and be there for him. He is your dad and you will feel alot better if the time comes and you no longer have him. I respect you so much for taking care of both parents. I know it is not easy but certainly rewarding. I took care of my dad before he died and I am taking care of my 92 year old mother. She is my angel here on earth. I started caring for my mom 2001. I know at the end of the day I did my very best for her and she is content and happy. My thoughts and prayers are with you.
I hope you find some peace. Your dad might have been hurt when he was a child. People act like that from be extremely hurt probably in their childhood. Forgiveness will always heal from within. God bless you!
Everything came to a head yesterday afternoon!
Since my dad had a bad fall three weeks ago, his agression has climbed steadily, and he has become more and amore uncontrollable. his bad periods started earlier and earlier every afternoon, and yesterday was a particularly bad one. He wanted to go home to the old house where we lived for many years, and no reasoning and trying to calm him down helped in any way. His day nurse Alna and I spent about an hour with him trying to calm him, trying to show him pictures, get his mind onto other things, but nothing worked. He tried to hit us with his walking stick, and although we took it away from him, he just tried different tactics. Having grown up with my dad, I could see the signs that he was working himself into a total rage, so I gave him a tranquiliser, which he took, but that only had an effect much later in the afternoon. When he started to try and break our fingers, and almost succeeded inbreaking my thumb in front of my daughter, that was the final drop to make the bucket overflow. I made him see that he was frightening my daughter who was watching everything, and as he looked at her and sneered, he grabbed my thumb and bent it backwards before I could stop him. The crack was audible in the kitchen, and my daughter simply lost it! She flew into him verbally, telling him exactly what she thought of him at that moment, which unfortunately did not help. I phoned our GP, who told me to take him straight to the hospital, where they would admit him, and monitor him.
The doctor then spoke to him when we got there, and afterwards she took me into another room and told me that he was totally senile and going through a “beserker” stage, and that we would not be able to take care of him at home any more, but that he now needed specialist care. Of course by the time we got him there, he had calmed down, but also because we told him a lie and said that we were only going to get his catheter changed, and then we would take him home.
I had already found a good care centre for him last week, but still need to get some legal documents completed. Then this happens! He will not be coming home any more, but will ge going into a place of safety for family respite, and from there he will be going straight into the home. He more than likely will be spending the rest of his time under sedation, but that will be for his and the staff’s protection.
My thumb is sprained, luckily not broken. I just feel so sad that we have been forced to do this, but in the long run it is the best that we could do. My family was suffering, not wanting to come home anymore, and he simply did not give me any choice.
I am so sorry and sad for you reading about this! So painful, in more ways than one. These diseases are so cruel that way, and seem to be effecting more and more people each month. I am really sorry your daughter had to see that, and for the reaction it produced. It is unfortunate that the GP couldn’t have advised you sooner that he needed outside care, but such things happen. You certainly did more than your share, beyond the best you could do! No one (that isn’t paid to) should have to put up with that kind of behavior.
This sounds so much like how my dad got, however he never lived with me (as I did not inherit a caregiver gene at all!). My dad got evicted from 2 assisted living homes for increasing violent behavior, until no one would take him and we had to dump him at the only hospital in his county that he’d not been to recently (meaning, all the other hospitals were familiar with him and would just discharge him after a couple hours). It was only by the grace of God that that last hospital was able to find a skilled nursing home to take him, albeit a few hundred miles away. But that was ok.
Facing that point when they can’t come home again is so difficult. I live in NM and my dad was in CA, so I had to deal with this remotely, and also flew out for a couple weeks to help with the first transition (which went well for a few weeks, then BAM!).
In the last place that took my dad, he spent the rest of his time under sedation too. No more midnight phone calls saying they were calling the police or taking him to the ER, with a frantic rundown of all the violent things he was doing. They could tell he was going downhill fast, so we just put him into hospice mode there, and within 4 months he passed away. I never got to speak to him or see him after the last placement, since he couldn’t figure out how to have a phone conversation, and he didn’t know who I was anymore. I think that that was mercy on the Lord’s part, to help spare us from some of the pain. The distance helped with that too. Everyone thinks they want to be with their loved one near the end, but I don’t believe it’s always the best case. It wasn’t for us. I would have confused and upset him even more, and I would have been a wreck. It was best to let the neutral professionals care for him. He wasn’t alone when he died, they were always right there. My dad had recently come to faith in the Lord, so I knew his suffering would soon be over.
If you are a Christ follower, He will will carry you through this turbulent time. My faith is the only thing that got me through. It all worked out for both our goods, just like He promised in His Word. God bless you and your family for your valiant attempts during an unworkable situation. Truly, you didn’t have a choice, I agree. Please let us know how it is going at the new home sometime.
i am trying to calm myself down as me and the children thought by putting my husband in a dementia home, which seemed nice he was there one night and the next day was a raging bull. He was a quiet man all his life, now they had to rush him to the VA because his blood sugar went to 480. and they can not control him there. He is fighting mad and pulled his cloths off and cussing which he never ever did. I am sick because I feel like we pushed him over the edge. Now they cannot keep him there and have to put him somewhere and believe it or not we live in a big city BOISE Idaho and they have no place for the behavior problem. They want to transfer him to a place 45 miles away and I am blind and will need some kind of tranportion and I am a mess. I am not hacdling any of this very well. The kids have been so good but they all have families little children and I just don;t know why I am feeling so guilty a she walked in the rest hime we took him in and now this. He tries to take off gloves they put on him and pushing his covers ors oss. I try to talk to him but he sometimes does not know me but will call me honey, like he did at home. cannot take him home even though I wish I could but he is strong and I am frightened. CN nyone tell me what to do. I cry all the time. I don;t want to get sick he needs me and I miss my husbabd even though I know that what he is doing is not him
Rose I understand your situation! I too am dealing with a spouse who has some form of sundowners or dementia disease, he was diagnosed with stage 3 lung cancer on the 26th of Feb as well, My adult children think it is time for a safer place for him, but we have never been apart! I am scared and confused about what time we have left together and I want to keep him home but I am afraid to do that too! I will be speaking with his Dr’s this week about a plan to keep him well and remove the middle lobe of his right lung as well as his confusion and mental state, I think some of it may be due to medication as he must take a lot of pain meds, he went in for back surgery only to have it cancelled and be told he had the lung cancer, so I know he is in a lot of pain from that as well. All I can offer is that you consult with professionals and take note of my email address (skesix1@charter.net) perhaps we can just lean on each other thru emails, I can only imagine how you must feel thinking it was you who put him over the edge, but I understand , I feel like if I put mu husband somewhere he will hate me for however long we have left and I dont do it that the time we left will be spent with him in pain and being in a drug induced, confused state that will will require round the clock care, My 94 yr old mother also live with us and I have to be brave for her as well, as she is very close to my husband, so I can not break or let my emotions out, it is very hard, I will keep your family in my prayers.
My dad is 88 and has been so calm and quiet for so long but the other night he got violent for the 1st time and was choking my mom saying he was going to kill her so today we talked to social worker and they want us to start finding placement for him they say he has sundowners and will get more violent this is such a hard thing I live with them and have 2 daughters with us as well one 31 and one 8 yrs old so they say it is for our safety but it so hard to know he is so confussed and now we need to put in some place it just breaks my heart and my prayers go out to everyone on this page who are going through this!
I am glad to have a place to ask questions that my mother’s Dr.’s don’t seem to have frank answers to. My mother at 75 had a heart attack and a stroke a year ago and seem to have come back pretty well, but still needed some assistance with daily tasks so she moved in with my husband and me. Our kids are grown and out so we both retired early to enjoy travel and each other, so having her in our home is a major adjustment. Then we started hearing my mother having very loud conversations with someone at night, all night long. She would laugh and be very sweet to the people she was “talking” to. Last month her Dr. thought it would be a good idea to have her bad knee replaced since she had been having alot of pain and it was hampering her walking without a walker. She had her surgery and was on a morphine pump for 2 days. She went into a mental state like I have never seen before, from crowds of people and her room full of popcorn to being trapped in the hospital basement and frantic phone calls from her all hours of the night and day. Finally her nurses asked me to come stay with her so she won’t climb out of bed and hurt herself and her new knee, what a nightmare that was. We brought her home after 2 weeks of PT and had home health nurse and a Physical Therapist come. Now my mother’s mental state seemed to have become worse. She does not sleep at night for all the conversations and wandering around the house wanting a shower or thinking she is in the hospital and not eaten for days. She has even called the hosp. and her doctor and told them she is in her hosp. room and she has not gotten a tray for 3 days and is hungry. She eats very little and is forgetting I told her things and where she is. I took her to her Dr. and he put her in the hosp. again and her nerologist said it sounds like Sundowners Syndrome ,dementia and small sezures too. She had an MRI which was negative. I am at a loss what to do now to help her. Is there medication or therapy? I really don’t want to bring her back home just to sit in the house, nap, watch tv all day and be up all night. I love my mother and dread telling her I have to put her in a nursing home, the guilt would kill me. She has limited funds so I would think an assisted living facility might be out of the question. I am an only child and my father passed several years ago. I don’t know where to turn, what to do or who to contact. I have POA and she has a living will already. What’s next ?????
Gloria, so sorry to hear all this. I too am an only child who had POA for my dad. When my dad got to the stage your mom is at, we placed him in assisted living until his funds ran low (actually, he got evicted before that, but that is another story, see my other notes on this site!). My dad’s sundowner’s kicked in after back surgery, during which he also had a stroke. He already had dementia and Parkinson’s too. In my opinion, your mom is more advanced than you can handle in your home. I am hoping Lynda or other experts will chime in with their opinions too. Different people respond to different meds, so we could all suggest different things, but not sure how helpful that would be. For example, my dad was put on Ativan, Haldol, and a bunch of drugs that I can’t even remember now. Most of them didn’t work for him, and his docs were also pretty powerless to effect any positive changes. His condition deteriorated, and his funds ran low enough that we got him placed in a skilled nursing home (so that Medi-Cal, which is the same as MedicAid elsewhere, would pay for it). Eventually they put him in hospice mode and stopped most of his usual drugs, and kept him on different kinds of sedatives, sometimes resorting to restraints if needed. Very sad.
I recommend that you contact your local senior center or Alzheimer’s Association to get referrals to people and places that can help you. A Place For Mom was a lifesaver for me, I am sure they can help you too (www.aplaceformom.com). They are placement consultants, as well as overall eldercare experts. You can also talk to your local long term care ombudsman (look in yellow pages, government listings). Find out where your local MedicAid office is and start applying now, as it takes a long time to get approved. They only pay for skilled nursing (i.e. convalescent home), so assisted living sounds out of the question like you thought.
About the guilt…please read The 36 Hour Day by Nancy Mace and Peter Rabins. Excellent source for all aspects of caring for and dealing with people with dementing illness. This will help you with your guilt. I too promised my dad that I would never put him in a home, but I had no choice. You may not either. Someone told me that sometimes there is no good choice, but just the best that you can make at the time. Hope that helps you. These situations are beyond what family members can handle on their own. It will most likely get worse, and she may become less and less the person you knew and loved. That is how it happened for me. You will need detached professionals to help her. That is what they are there for. You can go to medicare.gov’s website and compare nursing homes. Here is the link: http://www.medicare.gov/NHCompare/Include/DataSection/Questions/SearchCriteriaNEW.asp?version=default&browser=Firefox|4|WinXP&language=English&defaultstatus=0&pagelist=Home&CookiesEnabledStatus=True
Most important of all, call upon your faith in the Lord if you have it. (If not, now is a good time to start, trust me!). Jesus Christ is the only thing that helped me get through my experience intact. He guided every step of the way. He will do the same for you. Please let us know what happens, and feel free to vent anytime. We get it, really.
I recently heard about this syndrome. I think my grandfather may be suffering from this but he refuses to go to the dr to get checked. At times he feels fine but at night he turns every single light on in the house and has this anger towards my grandmother. And its only with her. He insists that she has a boyfriend and he paces and seems restless at night. And recently we have been experiencing a lot of rain and he has mentioned twice that he feels weird when its cloudy outside. Has anyone experienced this with a loved one? Could it be the “darkness” of the sky thats making him anxious?
Kim, part of my dad’s symptoms also involved turning on all the lights at night, as well as extreme jealousy toward his female caregiver. He would tell me how she’s got another guy on the side (he thought he was her main guy, of course). He would ask her for her ID and act like he was the sheriff. He eventually fired her (and didn’t understand why she was packing up her stuff the next day). This was the last straw that prompted us to move him from his home, as he was edging toward the violent man he would become. Hope it doesn’t go that way with your grandfather, but be prepared for anything. I think the dark sky would definitely have an affect. I also don’t see why some seasonal affective disorder wouldn’t be thrown in to the mix. I am sure it doesn’t help, and that sunny and bright would be better.
Hello,
My mom just got out of the hospital and she is having all symptoms that everyone is talking about. I been taking care of her for almost 20 years after the father passed away. She says nasty things to me. Comments like Im not her daughter and she wishes I was dead. Everyone tells me that it is not her and dont take it to heart. But I do, She will not eat or take her meds. She thinks im trying to poison her. I refuse to put her in a nursing home. I have 2 sisters and 3 brothers. When she went into the hospital they all were saying dont worry we will all pitch in. Well guess what 2 of them have not even come to to house to see her. i will keep doing the best I can. This just felt good to write how im feeling. Thanks for listening. Cheryl
Cheryl, I know you wrote this a year ago but if your mother is still with you, keep fighting the good fight. Live your life with no regrets. When your mother passes it is your siblings who will have to deal with guilt. You are a wonderful daughter. ~ Sue
My father (95yrs) passed early this year at home and we noticed that when he became violent or out of it, it was because he had a bladder or UTI. As soon as that was sorted, he was his old happy self again. We never had to hospitalize him for violence, only for check-ups and rehab when he had fallen or had the infections. We did our best to keep him calm and I called hospice in when his condition was becoming more than I could handle as far as getting any sleep and worrying about him trying to wander off when he really couldn’t walk but it wasn’t for lack of him trying. Mom slept in the same room with him and I slept in the room above. She would come get me if she couldn’t talk him back to sleep. He was only bedridden for a total of 4 and a half days before he passed.
In reply to the rainy day/ dark cloudy day observation, my mother, who is 94, becomes very anxious, doesn’t believe anything I tell her, keeps wanting to go home and doesn’t believe she has lived in her current home for 63yrs. Her Sundowners is worse on those days and it’s gotten worse with the shorter days – Michigan has the least sunshine of any other state during the winter months. SAD runs rampant here – I have a touch of it and spend a lot of time with the lights on because of it and drink a lot of coffee. My Mom has to go through the night time routine of bathroom, I do her presc. eye drops and then she pops out of bed and checks all of the doors and then checks what her escape route would be in case of an emergency, makes sure I’ll be staying all night and where I’ll be in case she wants to talk – I’m in one of the bedrooms upstairs. I try to reassure her as much as I can, eventually she will crawl in bed and fall asleep. she insists on keeping at least two small flashlights in bed with her and I purchase a couple every now and again because she loses them and lots of AA batteries. Those little flashlights seem to give her a sense of security more than anything else at night. Yes, I get very frustrated, yes I have a helper who comes in and does a myriad of things like vacuuming, dishes, reads to mother, just sets and listens to her stories and goes through all of the old photo albums with her, encourages her to go outside and pick up sticks and do a little in the kitchen garden. I never put her to bed without re-affirming that I will never leave her and that I love her very much. My 2 siblings want nothing to do with her and think she is a user – I’ve heard them talk in the past and I made up my mind that if the little house came up for sale next door to my folks I was going to purchase it because the other 2 were not going to be sympathetic or bother to care for our parents at all. I did purchase it 31 yrs ago and ended up spending the nights with my folks for a year and officially changed my residence to their address 2 years ago this coming Jan. I’ve been married and divorced twice because I refused to move away from my folks – a friend has been house sitting and taking care of my livestock in exchange for living in my house for 2 years. I have faith that when my house becomes vacant in the spring that something else will come along which will be a positive for me. Having faith is what has kept me sane through all of this.
My Mom is suffering from dimetia for the past three years. Lately I’ve noticed that she is confused about the time and is making breakfast at 9PM at night. She is constantly rearranging things and displays greeting cards from Christmas and Easter even though these holidays have past some months ago. It’s tormenting me to see this happen to her. I bring her to the Adler Clinic at Yale on a regular basis and I wonder if there’s anything I can do to help with this confusion?
My 60 yearold grandmother has been living with me for a little bit now after a month and a half in the hospital then a minth in a pphysical rehad do to a serious blood infection from a pace maker put in. shes been having wierd “fits” or “spells” at night such as calling me by another naming, thinking we live in alabama (we live in florida, but she did grew up in alabama) , forgetting she took her meds, wandering the house a all hours of the night, and the like. At first it was onlt happening once in a while then it went to a couple times a minth now its happing like 2 – 3 nights a week and there getting worse. Im so worried to mention it to her because shs all ready takibg it hard she had to start wearing diapers shes so worried about losibg her independence and I dont want to scare her. Because someone told me that sibce I have a 2 year old with leukemia im being “medically paranoid” and its probably just old age. But its starting to worry abd scare me because she trys to smoke n bed in forgets shes smoking, which we dobt even smoke inside, 4am cleaning ect. So it makes me worry she may hurt herself or may hurt soneone else by accident. I dont know what to do or even how to go about the whole thibg or if im even being paranoid”. Any advice anyone?
Narseis, You are not being paranoid.. that said.. you need to take some precautions.. if you can buy that smoke less cigarette that might help.. it is battery operated, I would remove all lighters.. you need to take her to a neurologist.. you need treatment and meds.. You need to have her mentally checked out, and a power of attorney both medical and financial.. so you can make some decisions. tell them what is happening. she is at that place where you ask her if she wants to go and she will say no. that is not an option. When you see the neurologist.. explain the information you gave us.. calling you by different names, doesn’t always no where she lives, etc.. document on a calendar.. daily what she says or does.. then take the calendar with you to the doctor… doctors are all about documentation.. keep a running email to yourself discribing the situations.. date each time you write.. date and time… God bless you and you are doing fine. Lynda
this whole scenerio with dementia has not been easy..i left my home,career and life to care for my mom with dementia..i have been doing this for three years..it appears that i will have to place my mother in a nursing home losing our home and modest assets. i will be going to a homeless shelter in our capital…everything whisked right from us,,cant keep personal belongings..how am i going to bring a cat and furniture to a shelter…nights are terrible. my mother is counting her money in her wallet over and over..counting her change..looking at her checkbook for hours over and over..she wont sleep nights..shes missing money she claims…i wish i had an alternative..she wont spend down..and is moaning at every bill i show her…she doesent even want to pay the taxes..this is not how i saw things for the future..around 8pm she starts the cuckoo period intill about 5-6 am.i tried my best..
To All: I Have a good friend Jim, who was a next door neighbor until he and his wife went to Alaska some years ago. about a month ago, Jim and his wife while in Alaska, got concerned about his elderly mother in California so he left his home and business in Alaska to care for His mother. Mother was diagnosed some years ago with Lupus and subsequently had a pain pump implanted to deal with Lupus issues. Shortly after Jim arrived at his mothers, he found out she was not goung to her pain Dr. to get her pain meds, He attempted many times to get her to her Dr. for medication, but Mother refused to go.
ENTER ISSUE # 1- (2 years ago), for that entire year, after she had called the police many times, and had made a total of 47 visits to her house that year, for various disturbances. We as next door neighbors, were accused by her, of shooting lazers at her through her roof, attic, ceiling, and into her bed to terrify her (every) night. This continued, even after Jim an his wife arrived to care for her last summer. His mother, who we, my wife and I, think she has had Sundowners Syndrome for some time now. After Jim’s dealing with all of the issues (mother won’t go to Dr.)(mother cursing at Jim) (mother refusing to leave house for any reason)(mother incessently complaining next door neighbor (Me),shooting Lazers at her every nite), Mid June Jim told me that he felt both helpless and trapped and after seeking help from many social agencies and workers, that he, with only Power of attorney, felt his only choice was to return to Alaska.
ENTER ISSUE # 2- Jim was accused by his Mother, and arrested by the Police, for grand theft. Jim was subsequently handcuffed and taken to Jail for theft. The charge was later changed to (Elder Abuse). Jim and wife’s only possesions- all money,clothes,trailer, are in impound til 8/4 . This is an example of what can happen when a child attempts to care for an elderly Parent with mental issues/(Sundowners Syndrome) I have known Jim for 26 years, and he would never HURT OR STEAL form anyone, let alone a Parent. Get Professional advice first. you wouldn’t want to be blind sided like this.
I am so sorry for Jim, sounds like he tried to do the right thing, This is a lesson to all, remember that there comes a time you become the parent.. as a parent you child says “No, I don’t want my 5yr old shots” you take them anyway… although we understand wanting to run away, if it is a child that is called abandoment.. turns out if it is an elderly with issues, it is abandoment… We are taught to respect our parents wishes, and when they have clear minds, as both of my parents had on the day they passed you must do that, but when they are mentally ill you are now the parent.. If they refuse you get assistance, get MEDICAL POWER OF ATTORNEY..so you can make appointments and trick them into going.. I don’t care if you have to say it is for an ice cream. Once in the parking lot, you bring the doctor out… and refuse to leave till he sees her/him. Just like with children you choose your battles, handle things you can handle without their opinions, and when it is a battle you MUST WIN, YOU WIN IT..if that means calling 911 and having them taken to ER for diagnosis. .. NOT getting their meds is a sign of not mentally well.. Don’t wait a year. A police record of number of calls because of her imagination is something a doctor could use to help with the diagnosis that she is incompetant to handle her own choices. Now if you call a social worker agency, don’t let them leave, till you have a plan.. If you are in an ER, have the doctor put in writing that they are not competenent, when you have it in hand see an attorney.. You can do a lot of things when you are in the hospital… before leaving.. ask that a social worker be assigned to her, to help you get the power of attorney you will need.. Once you leave the hospital, it is hard to get this help.. the hospital wants to send you home, if you say… I am not qualified to handle her illness alone, and REFUSE to leave the hospital.. you will get a social worker faster than your head will spin, it is a legal catch 22 and they will help… they will give you steps to getting power of attorneys, they will have home visits set up to help.. once they have you feeling confident , then go home, I am not an attorney, this is information I have used…. ask an attorney for help.. you can not abandon them at the hospital either.. .. you have to get a team… One thing is sure, you may want to run away.. I had many days with my mother in law and alzeheimers, but I also knew I had the child in her, and that was my responsibility.. If you have to leave and it is understandable.. you have to find someone to care for them, get them in a care facility and keep calling social services till someone helps you. If one does not give you the answers you need, and you can not afford an attorney, keep calling.. I appreciate the post on here, because it gives all of us food for thought. It sounds like Jim was trying to care for mom and listen to her as a mom.. I hope things work out for him, and his mom gets in a place that can care for her. It sounds like Jim didnt have medical power of attorney, or financial, and once a parent is sick this is harder to get , have these conversations with your families. Get advice from someone of knowledge if you are in this situation. Attorney, DSS, Department of AGEing, Thanks for posting the other side of a situation.
Lynda: I appreciate your response to my post and to attempt to supply an alternative (Medical Power of Attorney)To solve his delima in this perticular case. I have been reading the prerequsites in aquireing MPofA and California, The mother that Jim was trying to help, has to agree to his aquasition of the MPofA, before he could aquire one. His mother would definately have said NO WAY!!!. Unfortunately the longer Jim tried to help Mom, Jim found he was trapped in a (no win) situation. Jim did not want to leave his mother alone but the situation was affecting his marriage and all of his 7 brothers and sisters who FLED years ago, as mother had become so impossible to deal with. My heart reaches out to him and his wife, as he is trapped here in Ca. to try to get the charge of grand theft dismissed, as he is innocent of this. As you know, the wheels of the system can and usually move SLOWLY. The situation he is trapped in is SO BISSARE that he is affraid to go near the town he grew up in, for fear the police will find an excuse to re-arrest him. He is LIVING A NIGHTMARE and can’t wake up, and return to Alaska and put this behind them and get their lives back. I can’t for the life of me understand why when the police had made 47 visits that year, to her house to calm her down. Why they would not realize when talking to her that she was not rational. and issue a 5150 on her, to have her mental state evaluated, THAT WOULD HAVE GOTTEN HER (MEDICATION as well as PSYCHOLOGICAL HELP) and none of this would have ever happened. I don,t know if Jim will ever get this purged from his memory, because, as of now this is all he can think and talk about. The longer this drags on, the more it haunts him. I personally would not advise ANYONE to attempt to come in to the middle of Sundowners Syndrome, even with a parent without knowing exactly what to expect and especially if you have been away from that parent for an extended period of years so you don’t trapped like Jim did. Hindsight is ALWAYS 20 20 but my guess is, that Jim should have not told his mother he was leaveing, he should have notified a local sibling that he had to go back to Alaska to save his marriage and business,and left. QUESTION IS——- WHAT WOULD YOU HAVE DONE????. Thanks for your thoughts Jim’s situation. will
Dear William,
I have had Jim on my mind, he is in a terrible situation, I hope he can get good representation, and gets free. Yes, I have said many times, there are parents you need to leave to the professionals, and his is surely one of them. It reminds me of the movie Gas Light, he tried. There are abusive parents, and they don’t turn sweet as they get older. I very well might have made these same mistakes. There but by the Grace of God go I. Jim will not feel a stone thrown by me. I am glad he has a friend that truely knows the truth. My prayers are all of you. Thank you again William for sharing the other side of situation. Lynda
Lynda: Since adding my comments to this site, I have been unable to acces/read/find furthur comments/posts by anyone else and their experiences/challenges with sundowners. Did my comments/posts somehow lock me out to furthur site access??? Thanks Will
it shouldn’t. Look under older post.. It has been quite for a while.. but they are here.
My husband lost his job almost 3 yrs ago. He was sent home by HR bc some of his co-workers had heard him mention suicide and I know they only reported it bc they cared. He worked as a manager over 50 people for 23 years-same jobplace. He would come home and tell me that his boss was always on him about loosing parts or whatever. He always blamed someone else. You would just have to have known my husband 4 years ago. He shopped for the best clothes we could afford, took pride in his appearance. After he was sent home from work, the plant eventually closed. In the meantime, I took him to a phycologist (against his wishes) and he said the co-workers that reported this were lying. He was 54 years old at this time. I knew he was depredded-I went to sessions with him that didn’t seem to help. Then in June-09, he tried to kill himself with about 300 pills-ambien, zanax, high b/p pills-everything in the cabinet, then ran a bath and we just caught him in time before his mouth went under water. He never had to go on the ventilator. They pumped his stomach and he slept 3 days in ICU. We sent him to Brookwood rehab straight from the hospital for a week. He seemed better after his stay, but refused to take any meds for depression. He then started repeating himself alot, called one grandchild by another’s name-ask questions that were very strange-having memory loss about simple things-day of the week or what he ate for supper the night before. I took him to the Memory Loss Clinic in Birmingham and they ran a battery of tests. Doctor said he passed the test and MRI of the brain did not show anything. Months passed, he couldn’t find a job and truthfully, I don’t think he wanted to work. He began to drink beer during the day while I worked and I was very scared he would hurt himself or someone else accidentally. He always said that he could not sleep. Our family doctor and neurologist have put him on several different types of sleep meds. I even took him to the ER last month bc he hadn’t slep in three nights. we sent him to Stabler Clinic which was probably a mistake. All the other pts had alheimers and were very elderly. When he was released from there, they changed him to seroquel and trazadone for sleep. Now, he is abusing this drugs. I caught him taking (or about to take) 4 ambien and 4 zanax at one time. He sneaks and chugs beer, I have caught him. I have kept the medicicines hid for 2 years, but he seems to find them or get them elsewhere. This last weekend, I caught him again-demanded to know where he had hid the med bottle. He took me to it hid in a closet. He said that he had been taking that many all along to be able to sleep. He has had several falls and I always see a new scratch or bruise when I get home from work. I am about to the end of my patience. I am turning bitter toward him bc I am the one working and scraping by to pay our bills and he is here watching TV. I took him to our daughter’s house yesterday bc I can’t handle it anymore. It is affecting my job and I sure can’t loose that. She talked him into signing ppw making her the power of attorney. He goes Thursday to Kirkland Clinic for another assessment. Our money is running low due to medical bills. I have no savings left. I hate to do it, but I am filing for divorce and my daughter said she would get him diagnosed and help, for me to rest and not worry. He calls me all during the night, but he did that before if I was out of town for mandatory meetings for my company. Can anyone help me-him-our family?
Hi Cherry,
You have truely been trying to work this out, but it sounds like he has a mental illness without the right diagnosis therefore you are not getting the right treatment. However, you have to do what you need to. Has he been tested for schizophrenia, and such problems. Has he stayed anywhere for 30 days for diagnosis? I don’t think he knows why he is hiding the pills, or why he is really taking them, and is his thyroid right, to be up all night for nights.. has he had a full chemical work up? .. it sounds as though something in his body is making SPEED, and keeping him up. Yet some mental illnesses will do this to. I would want a 30 day stay in a hospital for stablization even if your daughter is handling it. You need sleep, cut your phone off, if you are burned out, you will handle things worse anyway. It is not the sleep that is the problem, it is a symptom of a bigger problem. What is making him not sleep, I would say to a hospital.. don’t give him pills to sleep, find out why his body is not letting him sleep. I hear you… Also find a representative from the AMI.. alliance for the mentally ill,, you need an advocate .. call AMI and ask for an ADVOCATE… You have done well, it is the sickness.. I will keep you in my thoughts and prayers.Lynda
Lynda,
My daughter has taken my husband to Kirkland Clinic today. They put him on Depakote, 2ml Zanax and a drug similiar to Haldol, I believe. He failed his memory test and/or mental testing. Dr. Clark said he believed him to have some sort of brain disease that is progressing rapidly since he had seen him 2 years ago. He goes back on Aug 4th for more tests. I don’t understand all of his, but I am going up to my daughter’s this weekend so we can have a family talk. The doctor told my husband he shouldn’t be driving and he hit the roof. He still thinks he is fine. Pray for us. I don’t exactly know where the AMI is. Where do I look for one?
Thanks
Cherry
Hi Cherry,
I am glad you have a doctor who is working on it, but if he gets too hard to handle, till they can find out what it is don’t put yourselves in danger. Is he agressive with your daughter, as long as he is not and she can cope great.. But, if this is coming on fast, it can turn worse fast. Have an imediate plan, then an emergency plan. http://nami-eastside.org/support/support.htm this is the website to I believe your local AMI. (alliance for the mentally ill) they have support groups and you are going to need their experience. they know the laws, and how to work around them in emergencies. When you go back to the doctors office ask him to help make a plan like (if her dad gets agressive with her what should we do besides call 911, is it in his file he has this problem, and can they find temporary mental health placement?). If your husband gets mad infront of the doctors that is good, it is a matter or record should you need it in the future. I am not a doctor , nor a lawyer and you need professional opinions. The support groups are great for getting information, they may have tricks on how they handle problems like this. I am sorry you are having such a time, and I am sorry for him, although it may be a blessing he doesn’t know anything is wrong. Don’t try to include him in your talks with your daughter , can someone take him out to dinner. Or can the two of you go out, and have someone visit with your husband. He will not understand and may think you are conspiring against him, and not realize you are both working in his best interest. He can not believe he is sick, no matter what you do, this is not like drug rehab intervention, his mind tells him he is well, and if you try to talk together he might just get mad. If you think he will listen and be part of his medical treatment that is your call. Please contact the support groups at AMI. I am glad they changed his meds, and I hope they work long enough to find out what the problem is. Hang in there, and God bless.. Lynda
My dad is 56 years old. Starting 2 years ago he was eating and I swear he had a stroke. Face drooping, couldn’t talk, walk or function in any way. After he was finally seen in the ER 2 hours later, he was a lot better. They checked him for everything. In the time since he has memory loss, tried to commit suicide, stumbles at times, slurred speech at times. He had slight change in his MRI but I guess not enough for some help. He tries to walk to store and buy beer, hide it in neighbors yards and disconnect gas line under house and about blow everybody up. He does some scary stuff sometimes and don’t know what he is doing. I finally got him in with a great clinic. I wish my daddy was well but he isn’t and I would live for someone to just try and help him. I am so scared he will hurt himself. He did not sleep at all last night and hasn’t slept today. Says he’s not sleepy tonight. He sometimes goes days without sleeping at all. Help?!?
I am so sorry Julie, Somehow each of us missed your post, Have things changed? Did you take your dad to a neurologist? His chemicals seem messed up after the stroke. Is he living with yoiu? Lynda
[…] husband failed to mention that she had sundowners or I never would have put her on narcotics,” he […]
My 79 y/o husband has end stage CLL. He had chemotherapy 3 years ago to reduce his spleen. His spleen enlarged again with a 250,000 WBC. This time he started on the ‘chemo’ pill ,leukeran(2mg., 3 tabs daily). He has been on it since May. Recently, he had a period of confusion after being awake all night. This was very unusual. He is usually asleep by 9pm. He sleeps well,although awakens about 6am. During the night he was obsessed with the full moon thinking it a UFO. I reorientated him several times but he kept going back to it. He has never been confused before so I was stumped. By morning his confusion continued. He knew the President, the year and month but very confused to the events scheduled for the day, where he was to pick up grandchildren (no plans for it), where the package was he was to pick up a package, (there was none), where our daughter works a where to pick her up (a he had been doing all along.). I took him to ER but all his labs and CAT scan were normal. The Dr. thought it was Sundowner Syndrome. One of the symptoms of leukeran is confusion. His oncologist took him off it for a week. He is better but but still having problems remembering. What do you think?
HI Jean, Sounds like it might have been the meds, If it continues, see neurologist. Allergic reactions can cause allucinations, but I have been allergic to a med and still had to take it. Ask your doctor about benedryl with the med, see if it helps. Let me know how he is doing. Lynda
My 84-year old mother had bypass heart surgery this past Tuesday. Although, she is doing well physically, I got a call from the ICU nurse asking me to come to the hospital the night of her surgery. The nurse explained that my mom was confused and afraid and the nurse was concerned that my mother “might hurt herself”. When I got there she couldn’t understand why her “home” looked so different. I explained many times, but she was too altered to comprehend the reality of her logistics. She kept insisting that she needed to use the bathroom although she was catherized and when I explained she would say “well, I’ll have to hold it then”. In the morning she was improved only to slip into her confused state after dark. The next night I turned on more lights, although it was harsh fluorescent lighting, it seemed to lessen the shadowy, confusing environment. She is due to be discharged to rehab, where she will stay for her physical therapy to regain her strength. Yesterday, uncharacteristically, she had an episode during the afternoon. She remembers everything else, including details I had to think about to recall! It is this one block of time that she is confused about. I’ve noticed that when my mother is overwhelmed she has great confusion, such as the event of my father’s stroke 7-years ago, when he died. She still does not fully comprehend the series of events as they happened. I am hoping that when she returns to the familiarity of her home of 50-years, her confusion will be obliterated, but that remains to be seen. In the event that this is fully a result of “pump head” following bypass that required some time on the heart-lung machine during the surgery, my mom will require assisted living. The nurse helped her to the restroom the other day, whereupon, my mother had no idea why she was there. When she stood up (it was already late in the day and dark), she asked why we were in a different room. We were in the same ICU room she has been occupying for days. However, the lighting in the room DID make the room “look” different. Although, my mom is fully lucid the majority of the time, this seems to be a random kind of episodic occurence that could be dangerous if she were alone (which is the way she prefers living). In fact, she chose to stay at the nursing home for rehab rather than have “strangers” in her home. I am afraid that this change in her living situation (if, in fact, proves to be necessary), will be extremely difficult for her.
Hi Amy,
Things will change for your mom, even if she does well with this surgery. Having these episodes will create danger in her home. The thing about sundowners is it very well can come and go. I am guessing the doctors are monitoring her kidney function levels, feel free to ask. Did you get a medical and financial power of attorneys before this surgery? If not try to explain to her when she is in a good state that these might need to be done, incase she had any other problems in the future, because if this continues, you make sure the nurses document it, make sure the doctors discuss it with you.. get it on record. If you feel you are not set to take her home, or that she is not safe to go home alone, make sure you have a plan. Then when she goes home stay with her a few nights, because she might sound fine at 10am and be up at midnight till 3 am looking for her home, even when she is in it. You and your mom have moved into a new part of life. I am sure this is stressful and may become more stressful. Stay in touch, and read back post to help if something new pops up, please leave a note. Lynda
what happened with your mom? how did she do post op? was she able to go home? did she end up in the nursing home?
My mom just had an episode of diarrhea and abdominal pain. was in the hospital for a few days, by day 2 she was angry, confused. It was attributed to urine infection and hospital psychosis. She was given ativan to help with her anxiety which she takes at home. It made her very confused and she ended up having another CAT scan to rule out a stroke. She returned to normal. she knew everyone and understood where she was but was having difficulty verbalizing. Ultimately she was sent to nursing home for rehab. We have noticed that she becomes angry, confused in the evenings even combative to my sisters and myself. This is where we are and we hope she will be able to come home. as you mentioned she does not want any outsider in her home.
tell me how your story ends
thanks Diane
Dianne, Thank you for asking about my mother. I just got home from visiting her. she is in a nursing home and she had fallen and fractured her left pelvis, had a touch of pneumonia, a urinary tract infection etc. She is 93 and also has congestive heart failure. She has now been in the nursing home for a week. At first she was doing quite well with exercise but she seems to be getting more tired and has lost her appetite. She has a catheter because every time they take it out and put her on a commode she cannot go so it builds up. At this point I am wondering if it is because of her fractured pelvis. anyway, I do not know what will happen. Only a miracle will get her back to her assisted living. she has to be able to walk with her walker without help, be able to walk to the dining room and dress herself etc. So far she seems to exhausted to do it. She is very anxious (as I would be) We just pray for her recovery and also live the outcome to God. Again, thank you for asking. Sharon
Stay on top of the UTI situation… it causes anxiousness. So sorry to hear of your challenges, Lorri
My dad has emphazemia, copd, has had lung cancer six years ago and has had angioplasty. Most recently he had congested heart failure and was hospitalized for a week. Since he has been home and prossibly long before my dad becomes a very violent person at night. My mother will hide in the closet with her cell phone and call a family member crying because she is afraid he is going to hurt or kill her. He says mean things to her and swears all night long. A few nights ago, he put his fist through a wall. I have researched all his medications and can’t come up with a lodgical reason for his behavior. I feel sorry for both parents. My dad always says he is afraid to fall asleep because his doc told him he would die in his sleep. What can be done. What if he continues like this. We are all scared and concerned for both parents.
Sharon,
Your mom has every reason to be scared. You didnt say how old they are. Not that it matters a lot, your father is hallucinating and that alone makes him dangerous. Do whatever you need to , to protect your mom. Someone needs to stay with them, your father needs to see a neurologist, not about MRI issues but about behavior issues. Sundowners does not show up on an MRI. If he thinks he is in a war, or your mom is an intruder, she is in danger. Have his doctor help get him in somewhere for an evaluation. This is dangerous. Go the distance for your mom. I loved my dad with all my heart, I made him cry when I took his keys… I had never saw my dad like a child, but failure to do so would have been dangerous for someone else. My dad had perfect thinking, he was just on COPD, and it was posioning his lungs and he was falling asleep without notice, which is how he passed over, he leaned over and went to sleep. We have to step into the parent role now, and one of your darlings is in danger. The other is very sick. Help them both.. get your dad evaluated.. Call his doctor tell him your mom is in danger and what is going on… let me know how things go. Lynda
My sister in law who is 43 yrs old had suffered from lack of oxygen when she was born. Mentally she is stuck at 12 yrs old. It’s always been hard for her to retain memory ,she is dyslexic VERBALLY, she cannot read or write but when she’s trying to tell u something she’ll get her placement of words wrong in her description, example; she tells me that at night she can’t move her legs ,what she’s really saying us that she cannot stop her legs from moving , (restless leg syndrome ) and of course all her life shes been on disability. . About 3 months ago she started acting really crazy, restless, wouldn’t lay down and go to sleep, started saying some crazy stuff ,so we took her to the doctor and found out she had a bladder infection. Ok so we antibiotics ,a week later back to doctors for follow up ,her bladder infection was gone, but her abnormal sleep habits and her hallucinations was still there and I was told that because of her disability it will take her about a month to get over it completely. Now it’s been way over a month, and she’s not acting up all the time like before, she’s still doing this , and every time she’s says a voice in her head is telling her that a family member is getting arrested or they’re dead or the ambulance is coming to get her cuz she is dead or that shed going to jail for being bad or she can no longer touch any of her stuff in her room cuz she doesn’t want to get into trouble, or she can’t drink water anymore. We are all trying to figure out if this is a part of the state’s one goes they ad an adult with this kind of disability. She recently went back to the doctors for a blood penal, and they found nothing wrong with her. She’s been yo see a therapist twice but they day nothing really out of the ordinary and leave the decision up to her on whether or not to return for another therapy session. She’s not herself, she’s not depressed because they gave her some anti depressants and they did nothing to help her mood. We are at a loss. Any one have an answer. Thank you april
Hi, My mom has been diagnosed with Dementia. She is 80 yrs old and had a seizure about 20 months ago. The dementia symptoms started a few years ago, and has progressed slowly. She did take Aricept and Nemenda for a while, but said she did not want to take them anymore. After consulting with her Dr, he decided to take her off all meds. She did great for about a year, then, just recently started having other problems, Incontinence being one, and night waking and walking being the other. She would wake up and go to the room of the family members who were living with her, and stand over their bed. When they would wake, she would ask where she was, or say she just came to check on them. They would comfort her then she would find her way back to bed. Also, we could notice an ‘odor’ when we would visit, then one day I got a call at work from a family member who was there, saying “she just had an accident and could I come and help”. She did slightly wet herself, but refused to admit it. I was able to address that issue, and things were okay. The family members who were living there, moved, and some of us decided we could not leave mom at home alone. Two of us have been taking turns sleeping at her house, being woken up 3 – 6 times a night. Sometimes with her just getting up to go to the bathroom, others with her lost and wondering where everyone is, why cannot she just go home, how long has she lived her, and more. We took her to the dr, and found that yes, she had a UTI. Antibiotics cleared that up, but the night waking has not stopped. The dr did tell us it was sundowning. At least now we have a name to put with the behavior. Some members of the family think we are exacerbating the situation by sleeping there. I don’t think so. I can only imagine what would happen if we were not there. I have watched my mom go from someone who was always cooking, baking and canning to now not even knowing how to scramble an egg. She walks around her house, lost and confused. Her dog is her best companion. (dad passed away several years ago from a brain tumor). The dr just prescribed Haldol. We have not started it yet, however I will tonight. I am just afraid of how she will react to it. Is it going to cause her more problems? I am rambling but trying to express myself, and seek some guidance.
My late husband had dementia and had sundowning. The Dr had put him on Haldol and that made him worse. There is another med that is much better and not making the patient worse. Aricept is much better and He didn’t have the falling down that went with Haldol.
Good luck and God bless you and your mother.
Holly, Mom was on Aricept but it did nothing for her dementia or sundowning. The purpose of Aricept is to help slow the memory loss. She asked to be taken off of the Aricept as it was causing her depression. (we noticed the difference also) Since being off those meds, (Aricept and Namenda) she has perked up quite a bit.
Interesting how each med works differently on different people. I just wish there was a cure………. sighs with wishful thinking…….
how fast did the Aricept make her depressed? My dad has only been on about 4 days and seems way worse. His quality of life is TERRIBLE. Six months ago he was watering the goats and horses. He can drive to Wal-Mart, about 6 miles, but he can’t remember he went to the bathroom 2 minutes ago. I can’t stop him from going to Wal-Mart. He is obsessed with constipation but has no problem. I think Wal-Mart is going to last maybe 2-3 more weeks and he won’t remember where it is. Good thing our town is small.
Nancy,
I so understand your stiuation…my mom broke her first hip back in 2009 then later fractured her pelvis then has just within last 3 months broke her other hip. After her first break she was staying with my sister…then wanted to go home which after considerably arguments let her where she stayed for a couple of months before she fractured her pelvis which meant another stay with my sister who nursed her back to health then she came to live with me. She has a suite within our house. This July she fell breaking her other hip…went back to my sisters to recover and is now back with me. Since her last fall we have noticed considerable confusion…memory loss etc. I work and fix meals so all she has to do is put in microwave and have all her waters she has to drink a day set out and make her coffee and put in a thermos etc ect. She can no longer shower unless I am there and it takes a lot of time and effort to care for her. She is tired of living this way and I understand but am trying to keep her out of a nursing home. Her friends tell her how lucky she is and she hates hearing that and tells me so. It is very difficult but what else do you so? I hope your situation improves and good luck to you.
Please no one should use Haldol….terrible medicine….terrible side effects…my mother at 88 had that for 2 days in a hospital and she went crazy for weeks, not just saying crazy , went crazy . We finally could not handle her , put her in a nursing home and finally after 6 weeks she just woke up and said why am I here and what happened to me .Like a light bulb , on and off. She did not even know her name , went into paranoid states and had to be restrained at times.She would scream to everyone to help her , that we and the nurses were trying to kill her. She slept all day came alive at night, had to be force fed, diapers and would not keep her clothes on and would rock on her bed on her hands and knees. Never in my life have I seen a medicine effect someone like that. Research this medicine , it is not for normal elderly people. She now is 94 and has continued to live on her own , although she now is getting very frail , has home health and we are considering an assisted living. But she remembers none of those terrible weeks. I found out later it has terrible side effects on the elderly and is really used to subdue people in mental wards.
Carrie,
Just had a call from my Mom’s hospice case nurse. Mom is 95 going on 96 and the nurse told me that although a doctor had signed the script for Haldol that it was her experience (over 40 years of hospice nursing) that this drug was dangerous in the elderly. So she and the nurse pracitioner were changing to a different drug and a nurse would be checking on Mom in the HIC facility every day and the case nurse would call me on Monday to see how the meds were working. Since my Mom qualified for in home hospice care and because she deteriated to where it was not safe for me to keep her at home and because her condition is terminal, we were able to place her in a HIC facility. We could take her out at any time we see fit but why do so? A skilled nursing home is not needed and she couldn’t make it in an assisted living facilty. Also Medicate will pay for all supplies and medications relating to her terminal condition. In Mom’s case that is nearly everything except for her thyroid and fentynal patche. Medicare and her secondary insurance pay for those except for a small copay. Thank God you found out about the Haldol I know I do!
My dad went crazy after haldol to the point of fighting us trying to rip out his iv,s demanding to leave the hospital. Its a very baddrug that needs to be taken off the market
My mom is 87 and does the exact same thing. We stay overnight 5 nights a week, but since we all work also, want to be with our families on the weekend. Last night (Sat) I called Mom to see how she was doing and my sister was over there, apparently mom had called her and didn’t want to be alone. She walks at night, checks on whomever is there, and wants to go home to “live in the other house where there were lots of people”. She’s never been the best mother, having 5 children with essentially no man in sight left her little time for her children, so now we are left to take care of her and as you can imagine there’s a lot of resentment along with the other emotional feelings of taking care of someone who is essentially crazy. We want to take care of her, but now realize we have to get an “outsider” involved since we can not be there on Sat & Sun. We have one sibling who is lemon and does nothing. She and I have had a falling out and haven’t spoken for two years. I’m thinking of calling her and offering her money to go over to mom’s on Sat & Sun night, hoping that money (which of course being the lemon she never has), and getting our relationship back on track will be an incentive enough to help our mom. Sorry for rambling, but your e-mail really struck a cord. This is the worst thing I’ve ever been through, I’ve always worried about losing my mom probably because she’s never been there and no father. I’ve been going to a counselor trying to get my feelings sorted out, at this point, since everyone my mother really loved – all her siblings and of course mother has passed over, I’m wondering if “going home” means she’s ready to go, it’s all so confusing and heartbreaking. If you have time to e-mail with any good tidbits, I’d been grateful.
Sincerely,
Debbie
Hello Nancy my name is Leslie. I have been taking care of my boyfriends dad who had a massive stroke almost a year ago. He to was very independent. We last week got the same diagnosis. And are up several times a night with him too. Sundowners is real and it will get worse. The one thing I do know is try it and if it doesnt work then stop it. It has helped us and he seems to be doing better. He got to the point where he would just snap and start hitting. Dont listen to other family and just do the best you can. My advice is follow your heart…listen to the dr. and take care of you. I hope this helps as we were desperate too but please just try it I think it will help your mom. God bless and good luck! p.s. as for the uti push water! Lots and lots of water!!
Oh one more thing that worked for me get a radio and turn it down very low just enough to barely hear it. He never liked music but it gives noise and he doesnt wake up every couple hours any more we now get 5 to 6 hours almost every night!. HUGE CHANGE OVERNIGHT! Research white noise for children or infants. MY DAUGHTER HAS A 3 YEAR OLD AND THIS IDEA CAME FROM HER!
Thank you Leslie. She usually has her TV on all night. She has Tinnitus and with the ringing in her ears, she has to have a noise around her at all times. (I have it too and it is terrible) Haldol seems to be working for her so far. She is sleeping longer hours with short “potty breaks” that are not disturbing to anyone but her, and really she does not remember them the next day.
My husband has demitia and I was up all night with him last night. Does anyone think maybe the dr will give Os a sleeping pill ???
The dr has told me about his condition only a week ago. He is 85 and I am 53. This is all new to me because nobody in my family has had this dementia disease. But I need sleep. Please give me some pointers to help.
Shirley,
With your husband being 85 and having dementia, I do not see why a dr would not give something. Be sure to see a Geriatric Dr, as they have a much better understanding of the elderly. The one we take mom to is amazing. They are so patient and understanding with her. Dementia is very real, as is sundowning. Please update on what you find out. I wish you the best.
Hello to all of you, my name is Leanne and I am a caregiver for the elderly, sundowners and dementia is very real, and can have long term and heartbreaking consequences for you family caregivers as well. Tho i cannot and will not push any kind of medication as each person is an individual and medication effects everyone differently, I do suggest getting help from as many people as you can, and taking frequent breaks, one very basic lesson is you cannot do it all!!!
leanne,
thanks for your words. I have been taking care of my 88 yr old mother who has been bed ridden since january of 2010. She was diagnosed with dementia since mid 2009. What scares me now is for the past 2 weeks she has been talking about these 2 korean boys ages 3 and 8. She talks in detail of their visits. At first I just took it as a dream but every day she tells me more about them and their family, I mean in detail, example: their parents finally moved here from korea, their mother has cancer, they cant wait to go to school. they go downstairs and visit my son, My mother was so worried about these boys one day that she started crying . She said they were outside and whe wanted me to make sure they were ok. She talks so clearly about this , not confused or disoriented. This is so real to her. Your words to take a break helped me relize that i can only do what i am already doing. Please e-mail me if you have any other advise. blackrose181@att.net Thanks again
Nancy I hope things get better for you…I know how frustrating it is. I live with my Mom and its sounds like my nights are just like yours. Mom is on no medications at this point…She will sleep good from about 4am -12 pm
Lisa
I have a similar situation. My elderly Mom is in a nursing home. The sundown is getting worse. they have tried trazadone, amoung other meds, at high dosages and it causes hallucinations but no sleep. They now want to try resperital (anti psychotic for schitzophrenia), she is not schitzo, but has alzeimers and dementia, up all night.
where do I go to get home care for 24/7? Is it covered by medicare?Medicaid?. My heart tells me to take her come and stop all these meds.
Any suggestions?
Our mother has been in rehab for the past 3 months following 2 falls and a partial hip replacement. One week ago she finally got the go-ahead from her surgeon for full weight bearing and come Tuesday the Rehab Center wanted her to go back to her Assisted Living since Medicare would no longer pay. They initially gave us 2 days but we insisted that we weren’t comfortable with that and could we pls put it off for a few days to make sure she was ready. We were doing that (and paying over $300/day) and last night we got a call that she had fallen again (2nd time since she went into rehab) and that she was extremely confused because of the sundowners. What do we do? I really don’t think she’s ready for Assisted Living but she was so anxious to get out of the Nursing/Rehab Center.
Nancy~
It has been, somewhat, comforting to read your email, as well as others’ comments. My grandmother was recently diagnosed w/Sun-downers Syndrome. She is roaming, during the night, at the nursing home. She has also shown more aggression, after 4:00pm. We are sending her to a place that specializes in treating people, like my grandmother………who was a kind, caring person all of her life, until the dementia hit. There, they detox them of their meds, and start fresh, to try and treat them. Their goal is to stop the roaming @ night. The patient may stay from 3 to 14 days. I’m not sure exactly what the success rates are, but, this is all we know to do. She is mobile, and strong, so she won’t be able to stay at the nursing home, if this doesn’t work. Also, if it doesn’t work, I don’t know what we will do. Prayers to you and your family.
Jacquie
Jacquie
I have the same situation with my mom. The nursing home has tried so many different, many of which she is still on but are not working. Where are they taking her to detox and begin again. Is it a geriatric dementia phys ward? that’s where they want to take my mom. The problem here is they don’t want her back so I’m hesitant to let her go. Although they can hold the bed for 10 days, the nursing home has a right to screen her at the end of ten days and not let her back in. Moving again is too confusing to her.
If anyone has any suggestions I would greatly appreciate it.
Hello All – My sister has terminal brain cancer from a brain tumor and she is in a nursing home now. She is only 58 yrs. old and suffered a stroke the beginning of August 2011. She is paralyzed on the left side of her body and needs a 2 person assist when transferring. She has had sundowners sydrome for approximately one month now. She gets breakfast and dinner mixed up and insists on coffee at 3 a.m. I stay over with her sometimes at the nursing home and when she wakes up at 3 a.m. and rings for the nurse to bring her coffee, I have some too and we also indulge in cookies. After that we go back to sleep and wait for coffee again at 7 a.m. Sometimes she’ll insist it’s time for supper at that time and wonders why we’re having breakfast food. I never realized there was a name for this. The other day I wheeled her outside in the evening after dinner and we watched the sun go down. Believe it or not she seemed to get back on track that night and knew it was time for bed and time to sleep for a while. The next day she was ‘off’ again, but at least for that night, she was on track for a while. She was diagnosed almost 1 yr. ago with this rare tumor. It is probably almost the end of her time, but she fought hard. There is nothing anyone can do for her now except treat her pain. Thanks for the information on sundowners.
Hi Sue,
Just read your comments. I just went on this site for a neighbor to find information. My heart goes out to you in dealing with your sister esp. at her young age. I am 59 and just lost a brother age 62 to prostate cancer. Sometimes life is not fair. Not sure if your sister is still with you or not but I am wishing you all the best.
Anne
My dad has had Parkinsons and dementia associated with it for approx. 6yrs. Within the last 11/2 weeks he has had a sever downturn. He was hospitalized and just yesterday we put him in a nursing home for rehab. Around 5-6 pm. is when he starts having his delusions, and out burst. Though my mom is with him he seems to target me with all his anger, saying some pretty harsh things, accusing me of alot of things. He sees bugs everywhere and is convienced there is a “man” out to get him if he tells about the bugs. This is all new to us so I am trying to learn to deal with it. It’s hard watching your loved one not understand what’s happening to them…..
Jovona, I have seen the same symptoms from the side effects of Haldol. Is he on Haldol? A man I cared for saw bugs and it was so real to him. Once off the Haldol, he was fine. Ruth
Parkinsons in and of itself does NOT affect the mind-at least not for years.
BUT the medicines, especilly the “adjunct” medicines CAN CAUSE HALLUCINATIONS.
Please have the doctor remove some of the meds, and see if he gets his mind back.
It is better to be stiffer in body than to be out of your mind.
My mother fell yesterday and fractured a bone in her pelvis. At night she is very agitated and crying. she is hearing music etc. and very confused. She is pretty good during the day. My brother just called and she is in bad shape tonight crying again. I cannot get up there the next two days as we need to go to Maine for a funeral for my brother in law. Help ?
Hi Sharon – I sympathize with your situation. I live 5 hrs. from my sister who is in the last stage of a rare brain tumor. Our family has been dealing with this for 10 months now – since my sister’s diagnosis. One thing I have learned is that one cannot be in two places at one time. I have logged many, many miles on my car traveling to visit her, and then back to my home where I have a husband, a daughter and a grandchild. No sooner do I get home and I’m back on the road to see my sister again. I do my best. My sister doesn’t have much time left, so now I spend more time with her. We do what we can do. There was a time during these past 10 months when the distance stressed me out. I had to let it go and do the best I can considering this huge obstacle. Our loved ones know we’ll get there and in the meantime put trust in your other family members to ‘hold down the fort’ til you can get there again.
A male friend of mine is a nurse who recently had a patient in her early 80’s and was in for a conscious sedation procedure, to fix a complication from a leg injury, she has been on pain meds outside of the hospital for an extended period of time. She made some comments in the evening showing confusion, then this patient made WILD, very specific and descriptive claims that sexual abuse was carried out by her male nurse on the night he cared for her in the hospital, (of course, she didn’t report this for 5 days)…… Is it possible that she was experiencing sundowners? Her claims are completely false, so I am trying to figure out if she was lying or just experiencing dementia or something of the sort…..
i am looking after my mother in law with the help of my husband she is 88yrs old and suffers from vascular dementia.she went in to hospital with a fractured hip, was in for 14weeks,she is now home but does not sleep at night (prior to hip replacement she would sleep from 8pm until 8am)she calls out for help all the time during the night and is up about 4-5 times to use the toilet she only gets about 2 hour sleep at anyone time which is very hard then come 6am she will go out like a light and sleep for a few hours.we have tried her on different medication but nothing seems to work,we have tried zoplicone risperidone and tempazipam.
Hi Anne,
I hear you are having a time, yes Sundowners mixes up days and nights. Nights terrors are so bad they can’t sleep the the sun comes up. You need to see a neurologist. This is a special problem and needs the right person. As you look back through the older post, you might find other meds that might help. Lactulous was a surprise that it helped. She may not change these behaviors. You might need to call in back up. God bless and keep you strong.
I am truly touched by all of your stories… I have a grandmother who has suddenly started developing symptoms of Sundowning.. It is very scary because she cries, thinks she sees people in the house and freaks out. She has not been diagnosed yet but we will have her evaluated soon.. Is there any natural remedy that can be used other than medication?
If she is going to be up and scared, try entertaining her , pick her favorite shows and run them at night on low volume. Also have her kidneys checked , if amonia builds up it can cause side effects. things that remove amonia can help some. I have no idea why, and sometimes it doesn’t help at all. My mother in law had a picture of babies in her room, she heard one crying all the time, and it was so sad she cried with it… I removed the picture, but she still dreamed. When hospice came in they helped. Know we care and understand. Lynda
My grandfather was just diagnosed with congestive heart failure. He has been in the hospital for about 5 days. Last night he started acting really paranoid. He didn’t believe he was in a real hospital, he thought the whole thing was a scam. Today he was talking about being kidnapped. When I alerted the nurse she tried to tell me that people of his age get confused and that it’s normal. I’m thinking that this nurse is an idiot. He was just fine the day before yesterday, he understood where he was and why he was there. Now it’s like him against the world. I just don’t understand what has happened!!! Can dementia just keep up on you like that? Then I thought maybe they put him on a new medication that I don’t know about, that could be causing paranoia. Or maybe it’s because he was taking Prozac every night at home, with no apparent side effects, because he was asleep and now (in the hospital) maybe he is taking it during the day so we are able to see the side effects??? Does anyone have any thoughts or advice. This is so hard to understand. He is one of the most level head men I know and now he being totally unrational. He did a 180 in a matter of 2 days.
My father who is 94 yrs. old now had a stay in the hospital this past summer. He had fallen and was too weak to get up himself. My mother called 911 and because my father’s pulse and b/p was so low, he ended up in the hospital for tests. The first night there he awoke at 11 pm and started yelling at ‘people who were in his room’ and demanding that they all get out of his house! The nurse came in and told my dad that there was no need to worry, that no one was in his room. He insisted that there were many people in his house and he demanded the police be called immediately. Now, a few months later, he still recalls that he envisioned this and that it was very real. He even laughs about it. I realize now he was ‘sundowning’ that night. He didn’t have another episode after that that I know of. He shows no sign of dementia, but he does have parkinson’s. Tests showed his red blood platelets were low and they gave him a transfusion (or two) and he is now off coumidin which was causing internal bleeding.
I have commented above in regards to my sister who is nearing the end stage of a brain tumor. She has sundowners everyday and night. It is always with her. She has been hospitalized since early August and started sundowning early September. It’s just been steadily getting worse as time goes by. She is heavily sedated now because of it.
Yes to all the above., Who has medical power of attorney, find out they need to be in charge. 2. Make sure he is getting his Prozac at night, and they have not forgot to give it to him. 3. Kidney failure can cause this real quick.. ask how his kidneys’s are doing, tell them you want a blood work up done, and you want to see the results. 4. If no one is listening to you , ask for a patient advocate.. 5. Sundowners can come on in the hospital with elderly, it comes with bad dreams, so he may feel kidnapped. for someone to just say this is normal is not an appropriete answer. Let them know loudly , he had his mental ability before coming in and you want answers. 6. ask for a neurologist referral. the meds he is on need to be monitored by a neurologist, not an GENERAL practictioner. (spelling) , You say he is your grandfather, how old is he? .. He can not go home alone, make sure there is a care plan for him. If they try to release him in this condition, let them know he was not in this condition before he came in, and more answers will be needed before you take him home. Now.. that said.. Read some of the old post, and see if you relate to anything.. There is a lot of information you may need on here. thinking of you.. lynda
My Dad has sundowners. He is already on Namenda and Exelon. Does someone have experience with a med that helps for sundowners?
Susan,
We are using Haldol for my mom, as well as a Xanax earlier in the day, and in the morning when she wakes up. Her sundowning lasts from about 6pm to 8 am. She also takes Trazadone. Her confusion is not gone, or really a lot better, she just sleeps more steady and is not up and worried as much during the night. We are exploring a new option we just found out, and that is at our University Hospital they have a Cognitive Disorders Clinic that we are getting a referral from her dr to take her to. Not only do they work with the patient, but the family as well. They offer support groups for the care givers, and I can tell you, we need it. Mom has progressed quickly the last few months and it is taking me and my siblings by surprise at how fast things are moving.
One thing I will add, my mom did not do well on the Exelon patch. It works different for everyone.
Best wishes to ou and your Dad.. Please post as to how things are going.
Hi,
A nurse told my mom today that my dad might have the beginnings of Alzheimer’s or dementia. He’s 67 years old, and has been in ICU for almost a week. The reason he’s in the hospital is because he was being treated for heart-burn, but a week ago he woke and couldn’t breathe.
Therefore my mom took him to the emergency room, and the emergency room doctor discovered he has four blood clots (two in his lungs and one in each leg) + pneumonia.
The very first night he was in the hospital his behavior changed drastically, he went from being a very kind gentleman to being a monster.
The nurses had to tie him to his bed, and he remained in ICU for six days. However, he’s still acting very confused, and is threatening the nurses. He’s fine when my mom is there, but she has a broken foot, and can’t stay with him around the clock. I live over four hours away, and am sick. It would be nice to go and see him, but I’m afraid he’ll catch my cold. He also refuses to have any sitters in the room with him.
Does anyone think he might have the beginnings of Alzheimer’s or dementia…one nurse also did tell me he might be a sun-downer.
Thanks,
Hi Ron,
Did your dad not show any signs of confusion before going into the hospital? You might want to look into allergic reactions to cumadine, and lovaloc (not sure of my spelling) they are blood thinners. 1 in a million are allergic to these and one of the side effects is anger. There is an alternative med. Benadryl will help a little but not a lot. Look into this, You do not wake up one day with alzehimers, it is a slow progress, it can move fast, but not a 24 hour thing, so there should have been other signs. Sundowners can come on quick, but look into the reaction, and ask a neurologist see him. That first night sounds like it came on quick, which is when they would have given him blood thinners. so.. 1. ask about reaction to blood thinners, it is very rare, but happens and the doctors might not believe that is it at first, but you have the RIGHT to refuse a treatment and request a different one. If it is the blood thinners, even if you change types that are arsnic free, it will take a few days to clear his system. 2. It might be sundowners, and if so you need a neurologist to administer meds. Your dad is mentally miserable. Any meds will help. 3. If the doctors don’t listen get a patient advocate. 4. If your dad is not in his right mind have a doctor say so, and make sure you mom or someone has medical power of attorney. I hope things get better for all of you. I hate you are so far away from your mom and dad, as it sounds like they have entered a time when they need help more. Don’t try and take over, just assist your mom, respect her and him. I am not an attorney nor in the medical field, I have a lot of life experience, but These are just things I have seen happen, and would want you to check into. God Bless and keep you all in his care.
Hi Lynda,
My dad did show signs of confusion about sixteen years ago…he had a hip replacement. While recovering from the hip operation a fatty embolism broke loose and passed through his brain. He ended up in ICU for three weeks in a coma, but could hear everything around him. A nurse told my mom and me “your dad / husband will probably not get any better; you need to start looking into placing him into a home” my dad heard this nurse say these things.
My mom and I immediately told his doctor what the nurse had said, and the doc. was furious. The doc. told us there was no reason to believe he’ll not have a full recovery, but there was a two to three percent chance he wouldn’t. However, he did eventually come out of the coma, and was very confused. The doctor released him from the hospital after five weeks, and he was still a bit confused until he got home. Once he got home and was able to sleep in his own bed for a couple days, the confusion went completely away.
This time is very similar, but he is now on his way to a full recovery. The doctor released him today, and he’s back home with my mom. However, my mom has convinced him the reason I didn’t visit was because I didn’t love him not because his doctor and nurse told me to stay away with the bad cold I had.
My mom is a bit confused…she’s always been confused her entire life. She wasn’t a very good mother to me, and she’s good at convincing him of certain things for a while. I’m certain he’s still a bit confused, and she’s using it to her advantage…my mom is a very jealous person. She’s extremely selfish and my dad is very, very giving…therefore, lots of people have been coming around during his sickness to help. She can’t punish him for the care people show him, but she’s punishing me now, and refuses to let me talk to him on the phone.
Realizing this has nothing to do with my dad being a sundowner or having dementia, but hopefully it helps you to better understand (what could be some of his confusion). He’s always tried to make her happy in life, and settle arguments + always takes her side in most cases.
Although, he did tell me when I was in my twenties “son I love you more than I could any child in the world, but you do realize your mother is a bit crazy?” I have always taken that to mean he’s sorry for the way he’s treated me.
My mom doesn’t need power of attorney, but I’d never try to get him to give it to me. She’d have a fit and make his life a living hell once I left.
Thanks for your advice,
Thank you for your great advise and concern. My brother, who lives in Davis, CA has power of attorney at my mom’s preference. However, his advise from CA was not very relevant to the situation at home and served to add to the stress for me. My mom recovered physically very well and was discharged to a nursing home of her choice for a few days of rehab. Her brother and his wife live very nearby and were lifesavers in many ways, but also made it difficult for me in getting the “real” story. I have mixed connective tissue disease and managed to acquire a head cold by the time my mom was discharged from the hospital. I did not go into the nursing home, as her stay was to be brief and I did not want to compromise others at the nursing home. I called my mom, who told me she wanted out of the nursing home as the physical therapists hurt her shoulder and would not allow her to “pass” on therapy. I arranged to go get her the next day per her decision and in talking with her doctor, his approval. I then encountered much opposition from my brother in CA and my aunt and uncle. They told me my mom wanted to stay (in fact a few days longer than prescribed). Since I knew firsthand that my mom was having sundowner symptoms while in the hospital, but sounded completely lucid while talking with her at the nursing home, (she was not returning my calls at this point), I, basically, undid everything I’d done that day to secure her release the following day. I could only assume that my mother was telling me one thing and everyone else, including the nursing home staff, something else. This situation caused me a great deal of anxiety with second-guessing. After the fact, my brother emailed me to say “well, you were right. Mom doesn’t want to stay”. As she only had one more full day, I let it be. She came home and refused my aunt’s plans to stay with her for a few days. My mother has always been difficult, hard to please yet not forthright in her desires. It makes helping her very difficult. I have to try to decipher between the lines what she really wants. This is not new, but it creates a great deal of anxiety now. She is not driving any longer. I finally called her, as I knew I’d wait forever to hear from her and I took her to the grocery store and pharmacy. She remembers details about everything before her surgery without hesitation. She does not remember much of the stay in the hospital. She is very aware of everything happening around her now. However, I notice she is “childlike” in some respects she was not prior to the surgery. For example, the visiting nurse was a source of great aggravation for my mother. She made the statement to me that the nurse was insistent about keeping her appointments to monitor mom’s vitals. My mother said the nurse never came at a “convenient” time. My mother has no pressing appointments, needless to say. The nurse maintains a strict schedule on all of her assignations. My mother doesn’t seem to understand or care about this fact.
When I took her to the pharmacy and grocery store, she headed for the things on her list. She wanted sweet potatoes, as she is inflexible with her eating and has one nearly everyday. The stocker was trying to add to the bin in the store and my mother, without hesitation, got in his way, instead of waiting a moment, until the young man stepped away and let her have at it. Normally, my mom has always been reticent and overly compensating, but she seems to have lost some of her impulse control. I noticed some people at the store stopping and observing her quietly, not saying anything, but looking at me as if to say “what’s wrong?”
All in all, she is very lucid, though and remembers everything from the past. The surgery has changed her to a degree, but it is difficult to say if it was the anesthesia, the bypass, or just the trauma of the whole ordeal. She seems fixated on her scar beyond what my mom would have been in the past. She states that “had she known how traumatic it would be, she would not have done it”. I reminded my mom what the doctor told her would happen if she hadn’t. He described a rapid decline, trips to the hospital, and intubation, which I believe is true. I do not believe she would choose to suffer in that way.
My relationship with my mother was troubled once I reached my teens. I was estranged for many years as she disliked my first husband and would not attend my wedding. She and my father travelled to Jamaica for my brother’s wedding. Despite the fact that I always help her in any situation, at any time, she remains somewhat disapproving. It seems the best I can do is honor her wishes to leave her alone unless she asks me for help. Otherwise, she interprets anything else as intrusive. I was laid off, due to the economy, two-weeks after my divorce was finalized. I have an 8-year old Scottish Terrier as my companion now. I offered to help her, even move in with her if she wanted that, but she is concerned that my dog might pee on her carpets. Eventually, when I can no longer afford my rent, as I remain unemployed for over a year now, she advised I check into a shelter, which means I may have to find a good home for my Scottie (possibly they allow for pets, though). So, it is with great relief that my mother is able to remain independent. Thank you kindly for your help and concern.
One question I have is this. Is it common for the elderly to continue to lose weight following surgery? My mom’s normal weight was 130 lbs, but she lost weight as her heart condition accelerated and went down to 115 lbs and since her surgery, has plummeted to 108 lbs. She claims she just is not hungry. Thank you for your help.
A Becherer
The moral to all of these stories seem to be that anyone over 55 needs to buy long term care insurance.
I was taking care of my mother (end stage emphysema) on hospice and it nearly killed me trying to take care of her, 2 children under 10, and work 2 jobs. She also became quite demanding with her meals and tv shows even though she saw I was running around. Meanwhile, she was improving and walking around the house and I was physically and mentally exhausted all the while claiming she didn’t want to “be a burden”.
She ended up falling and breaking her hip and she dislocated it shortly after that in rehab, also has severe short term memory loss developing and sundowner’s syndrome. Called me last night from the nursing home to pick her up and that she couldn’t stand it anymore. However, she doesn’t participate in anything, and it is truly one of the nicest nursing homes I’ve seen (and I’m in the medical field and have seen my share of them).
A few tips for the future aging parents
–Don’t rely on your children to take care of you when you grow old and unable to take care of yourself–a few months here or there is doable, but it’s a big burden, especially when they are trying to raise children and have a life of their own.
Don’t say, it’s my life and I’ll do whatever I want, and then depend on your children when you are embracing bad health choices (i.e. smoking, excessive eating, etc).
– Don’t think you’re just going to die in your sleep one day at home, that rarely happens.
– Do buy some type of long term care insurance–this way, you can be care for at home–your $1500 a month wont’ pay for your aging house which is in need of serious repairs, nor will it take care of a part-time caregiver.
I’ve learned that I don’t want to be placed in an environment where they are at liberty to just drug you. When you are placed in a nursing home, assisted living home or an alzheimer’s unit it appears to me that you turn over your well being to those who treat you like a number. Finding someone to treat you the way they would want to be treated is the key — to me that’s family or a Christian home where life is treated with respect and dignity.
Life is a choice, My GreatAunt took care of my great grandmother, when she came home from Africa as a missionary, My Grandmother took care of my Aunt, while working full time and raising 4 grandchildren, My mother took care of her mother and her dad with the loving help of 3 of those grandchildren and her own children, My sister and I took care of our Mom and Dad 4 years around the clock.. Life is choice, and our family sees it differently , but our family enjoy each others company, we laughed and smiled and each one of them said thank you on the day they died.. Everyone of them.. So sometimes it is the family that enjoys taking care of them that would not want them anywhere else but by my side. I can see that your family truely needs an insurance policy to releave the burden, we didn’t see a burden. I also took care of my mother in law for 4 years with alzheimers. Every one of these minus the first, passed away here at home in the house I lay down each night in. The house my grandfather built. We were blessed to be the caregivers. It is not a job for all.. But for me and Mine we were blessed.. We got up each day with our best friends, and I understand families are different, I respect those who need a team to assist, they were in different situations than I, I respect some parents reap the seeds they sowed, yet some children work past forgiveness and still care for them. I respect your choice, and can see how you needed to just voice your stress. We understand stress. I am glad you found a good home for your mom, and I can see how she could push you to wits end. But, I think the moral of this story , is respect each persons decision, and some children will truely enjoy the company of their aging parents. It is a conversation they should have.
Mi hermana actualmente tiene 50 años, desde hace un tiempo para aca empezo a presentar convulsiones y le diagnosticaron hepilepsia, y en los útimos daños se le ha presentado un problema mental. Cuando esta en crisis se empeña que esta mi madre ya fallecida y se comporta en gesto y voz como una niña. Tanto el neurologo como espsiquiatra estan al tanto de esto, ellos la medican, pero cada día las crisis son mas seguida. Que puedo hacer por ella? Necesito de su ayuda por favor¡
-Translation-
My sister is 50 years old now, for some time now began to have seizures and was diagnosed hepilepsia, and the latter one submitted damage a mental problem. When in crisis insists that my mother died and behaves in gesture and voice as a child. Both the neurologist and espsiquiatra are aware of them, medicate them, but every day more crises are followed. I can do for her? I need your help please
My Dear Nelly,
I can hear you pain , and your heart breaking. I am so sorry your sister is going through this. The brain damage is so hard to deal with , it can change a person’s complete behavior , you can not change what is happening, you can only deal with the best way you can. Don’t argue with her, that will only make things worse and She Will Not.. understand. So don’t waste your precious time together arguing. If she is a child, you will need to become a comforting parent. Make her feel safe. If she wants jello at every meal that is ok. She is on a journey, and you can only assist. Keep her as comfortable and happy as you can. if she becomes stressed over something not real, don’t argue it is Real To Her. When she believes she is a child and her mommy died, comfort her. .. Now.. ask the doctors if there is another med, maybe another med will work better than the one you are getting. Ask them to try another. Is she sleeping? Is her area safe,? put a baby monitor in there if you need to .. Never be disrespectful, she can not help what is happening to her, if she had a choice ,it would not be this way. Sometimes the meds she is own have strange side effects , read them so when you speak with her doctor, he understands you are educated on her care. Please get medical power of attorney, look online if you need to for the forms. I am not an attorney, but I know you need this to represent her in a hospital setting. Get her neurologist to assist if you need to . If she is in a hospital, ask for patients assistance to help you with this . Most hospitals have people to help with this type of thing. I will think of you often. I hope someone else has more advise. .. Make sure you get rest… and a break from the stress if possible.. Lynda
Just a few comments. My 95 year old soon to be 96 year old mother was diagnosed back in February with end stage congestive heart disease. The pulmonary specialist that was called in at that hospitalization recommended that we check out in home hospice care as she was not going to get better and this was a terminal condition and he expected a life term of about 6mos. He said that she definitely was a candidated for in home hospice care. We started that and at that point she still could feed herself, bathe herself, and go out with us using a cane. She did have trouble sleeping nights. At the end of Aug she suffered a minor fall at our home but she remained with us and hospice people seeing her and guiding me. In less that three weeks later, she suffered a really bad fall and it was apparent that I could no longer keep her safely in our home. The hospice people suggested a HIC facility. This is a facility which is in a home setting but can take no more than 2 patients. It is a step above assisted living but is not a skilled nursing home and you do need a diagnosis of long term chronic illness or a terminal condition. For some of you it may be worth checking into. BUT IF YOU DO BE SURE TO VISIT THE FACILITY AND CHECK IT OUT. We checked out five in one day and turned three of them down right away. One was full and the other, while they took good care of the people, they were also inclined to hike the monthly rate for every little thing they had to do extra above basic care. I also found a wide range of monthly basic fees. I did find with the help of an outsource researcher that the hospice company worked with, a wonderful place for my Mom. I know she isn’t going to get better and now has Sundowner’s Sydrome but she has tender loving care. I am having a sense of peace for the first time in 5-1/2 years. I hope this story may be of help to some of you. I pray nightly to God to thank HIm for His gifts and to ask Him to continue blessing my family and those who are now considered family because of their dedication, compassion and help.
Thank you for sharing. It might help someone else know what to ask for or about. I don’t believe we have this in our state, But, I like the idea.
My 86 year old father recently became ill. He fell 2 weeks ago yesterday but I was not informed until 2 days later. I took him to an ER where they took a CT Scan of the head, which showed a subdural hemorrhage. According to the ER doc, it is relatively small. Due to his advanced age, surgery to relieve the pressure will not be performed. There was no neurosurgeon on call at that hospital and he was transferred to another. They discharged him 2 days later.
Fast forward to the next day. My stepmom phoned me that evening and asked me to please come over and straighten out Dad’s medication. It was all helter skelter, out on the table and in a box on the table, all mixed up. I went and did that. Dad is brittle insulin dependent and records all his readings on a tabled document for his endocrinologist. He didn’t seem to know what he was doing and couldn’t write them in, just sat there holding the pen.
Sometime during the night, he got out of bed and fell again. This time he landed in the ER of hospital from which he was discharged just the day before. He went there complete with a laceration to the back of his head and a neck brace. He spent 2 days in ICU and is now in a private room. It is my understanding that he’ll be discharged on Monday. My stepmom realized that she won’t be able to take care of him at home so he will be admitted to a skilled care facility.
Two days ago, he started sundowning. Night before last, this went on for the entire night.and all day yesterday. His symptoms are tossing his head from side to side, flailing/flinging his arms/hands, and swinging his legs over the bedrail in an attempt to get up. He tries to talk to us, but nothing much makes any sense. The dr. wrote an order for medication to calm him down, and last night he slept through the night.
A friend is at the hospital with Dad and called my stepmom to say he is doing better. By better, I mean asking for water and a Coke, and eating some of his lunch. This after he has barely drank or eaten anything in 3 days. I told her I’d have to see it to believe it.
We have been told by his doc and nurse that he is likely suffering from the early signs of dementia (delirium has also been mentioned) and that these symptoms can disappear as quickly as they appeared. Is this accurate or will it only worsen? What have been your experiences?
Sorry to have been so winded with this. Thanks for your insight/suggestions.
Kathy
My husband is in later stages of Alzheimer’s disease and I was his sole caregiver. I found that I would no longer be able to keep him home safely, Dr. told us to take him to ER, they would admit him and then they would find a nursing home to put him into and medicare would pay for it. Keep in mind he was able to walk, etc. After he passed medical tests, they were going to admit him into psychiatric wing and told me he would be fine and to go on and leave. At this time he was becoming combative because he was confused and scared. I have no idea what took place between then and that night as he was unable to walk or hold his head up. He just sits there despondent looking down and I tried to lift his head and it won’t lift. His eyes are glazed over. He went downhill 100%! What on earth has caused this?
Beverly, I am so sad this happened but not unusual. They took charge and put him on such strong meds, he can not move. Sounds like the put him on seizure meds, or strong physcotic (sp) drugs he can’t move. They did that so they don’t have to deal with him. He might have done better on less meds, doctors often over medicate. If he is in the phsyc ward, he should have a medical power of attorney, if that is you, you will also need a daughter or son you can trust or a friend, to help understand what they are doing. There should be a 30 plan in place and a 60 day plan in place, the hospitals do this on the treatment teams which family should be a part of, ASK .. BE VOCAL… say.. I would like a copy of the treatment plans please, a list of meds, (one doc got to my aunt and if we had not had medical power of attorney he was planning shock treatment on her, we stopped it ) the Physc ward is not where he belongs, he belongs on a geriatric unit, with a geriatric specialist, not a physc specialist.. ASK he be moved. Ask what drugs he is on and why, if they gave him two new drugs at the same time ask why… get the drug warning sheets, if there is a seizure med with a pyhsycotic drug, ask that one be removed, how can you tell if one works alone with out the other , the other might not be needs. Or ask that the amounts be cut in half. The physc ward, thinks of only one way of control. please get a geriatric specialist to help. Ask the hospital to assign a family patient assistance coordinator. Call or go by his doctors office and tell him what has happened so he knows what will happen if he tells anyone else to do this. Keep in touch.. every thing we suggest is only from our life experiences. I hope something helps.
LYNDA
My mother in law is having the same falling problems, no one can explain because they don’t know… Like others here at sundowners , falling is part of the problem, they loose ability to keep balance. 3 weeks ago, my mother in law could eat and drink without assistance, walk with a walker, tell you if she needed to potty, and walk with you to the potty. she could walk to the car and get in and out.. 2 weeks ago, she could walk with a walker, get in and out of the car with assistance, but would forget she was in a chair and mess in her pull ups, she started throwing up because she was not chewing her food, then she would forget to finish eating if you didnt tell her to eat each bite. 7 days ago, she could stand with the walker, sit in the wheel chair, stand at the car so you could help her get in the car to go to day care, she would eat 1/2 of her food, and began sleeping alot, the day care said she was more combative and needed her meds. on an emergency visit with neurologist, whom she has seen since diagnosis of alzheimers ( which often comes with seizures) he siad she was getting worse and it would come fast now.. she struck him 3 times in the office.. he is the sweetest man alive, and she wanted to take him out… then out side his office, she could not stand with walker to get back in car.. 2 days ago.. we got her up to go to day care, she could no longer control her legs, her brain, would not tell her legs to stand, and she can no longer follow directions of any kind, today… she is bed ridden, and has to be hand fed… helping your parents cross over will be the hardest thing you ever do.. at first there is shock that no one can fix her, then how to handle it without the frustration and anger stressing you out, it is what it is.. no one’s fault, how to help your love one to cross over.. treat them with respect, even if they are not giving it to you (they are sick , you are not) , keep them clean, give them what they want and don’t force anything you dont have to . dignity sometimes means dying without arguements.. the day care said she is always on her feet following someone.. my mother in law fell 3 times in one weekend, one time we were within 4 feet and she had a walker, but her balance was off, and we could not move fast enough, then she fell twice at the day care, they were scared we would be mad, NO, we understood it is part of end stages, it takes balance away from them. there is nothing we can do, love her, even if she doesnt know me, keep her the way i would want someone to keep me.. Let go and let her cross over, with love. we know we have done the best we can and are still doing, so when she gets to heaven and looks back and all things are clear, she will know we did our best.. and she was loved.. that is all you can do, keep them comfortable and give them respect, and know when to hand off if they require a team to take care of them. we are looking for respite in a nursing home, but hospice is coming in this week, and may help. Whatever you do for her, she will know you did with love. Medicine to help them calm is wonderful, sometimes different meds have to be tried. Don’t stress over side effects, they are preparing for cross over, what ever keeps them comfortable out of mental and physical pain. I know this is a hard time, and we will keep you in our thoughts and prayers.
Thank you for the kind words of encouragement for everyone to be loved & give love. I find it sad when people want to throw away an elderly person & call them a burden. People & family are priceless, just because they have lived their lives. We should punish them? We do not punish infants because they do not know, it is our job to teach them, as is our job to re-teach our elders.
[…] ok for awhile. After awhile Sun Downers started becoming an issue again which became much worse. Sundowners Syndrome – Symptoms of confusion after sundown | SundownerFacts.com Her usual meds that she had been taking called Seroquel was canceled by her medical coverage and […]
My father recently received 4 units of red blood cells, and had a colonoscopy at the same time. Because of his heart condition, they put him in a “twilight state” for the procedure. Ever since then, he has been walking the house at night, completely confused. Of course, the doctors are relating it to sundowners, but he never did this until after his procedure. Could the anesthesia have caused this? He also has prostrate cancer and is being treated with hormone therapy, and is very emotional. Is it possible that his hormones are out of whack? this came on so suddenly!
Yes, anesthesia can do this. It did it to my mother a few years ago and she did not get her head straightened out until she got home in her familiar surroundings. Now she has sundowners and is up alot all night long. We are trying the S.A.D. bright light and it helps some. She will be going to a special clinic is 2 weeks for a day of evaluation by different specialists who will then make recomendations to her primary care physician.
Hi Debbie, For some reason it happens a lot after hospital stays, some think the internal clock is messed up, which the way they wake you up all night in a hospital for days or weeks on end, I can understand, but the night terrors that often come on too are just scarry with no rhyme or reason. Hormones can had a lot to one’s thinking, for better or for worse. Sadly , I have not seen a cure for sundowners, but there are meds that make it easier to deal with for him and the family. See a neurologist for referral, Sundowners comes on quick without warning sometimes. I see he is dealing with a lot. Try to make him feel respected, protected , and comfortable. That is all you can do. Let the doctors take care of as much as possible. I hope there is a caring family / not just one person dealing with this daily. If he is married, make sure the primary caregiver is cared for. Anesthesia, or no anesthesia, this often comes on after a hospital stay. Get some meds so all can get some rest. Hang in there and let us know how things are going. Lynda
So my babysitter Alice whom i have known since the day i was born, is like family to me. She is one of those older woman that seemed ageless. She played tennis every day in a competitive league, walked 5 miles daily, and took care of her dying husband and my brother and I all at the same time. She was amazing and full of life.
Unfortunately two years ago, her daughter convinced her that she was to old to live by herself and that she needed to be closer to her family. Reluctantly, she agreed to leave her home and move into a nursing home 2000 miles away in florida, a few minutes from her daughter’s home. Ever since the day she left, Alice has been depressed lonely and homesick. The nurses in the nursing home do not let her clean her house or take care of her husband by herself. She calls me every once in a while claiming that her daughter never visits, she is being forced to take medicine (10mg of gendon) and now her husband has been taken away to live in the hospital part of the home so that the nurses can take better care of him. She claims that her daughter doesn’t listen to her and refuses to buy her a ticket to visit us.
Now Alice’s daughter called me last week claiming that alice has dementia and has been diagnosed with paranoid schizophrenia. She claims that alice believes the nurses there are trying to kill her, and are moving her things around when she is not there…I do not believe her, alice is SO independent and hasn’t mentioned this to me when I talked to her last. After reading the comments on this website, it is possible that Alice is suffering from sundowners, as I always seem to talk to her after breakfast and she seems fine, yet her daughter clams she is dellusional. I don’t know what to do as I am 2000 miles away and have not personally seen Alice in two years, and I do not know who to believe anymore:( Also, i looked up the medication (gendon) that her daughter claims the psychaitrist has prescribed for her, but I couldn’t find it, so does this medicine even exist? What can I do to help?
My mother is 93 years old. she is in excellent physical health and mental as well. she had a TIA 6 years ago but recovered from that. one week ago after having dental work done she complained of confusion so, thinking she was having another TIA, took her to the hospital. they said she had a bladder infection but no TIA. she was moved to a rehab. she goes from days of being fine to days of being completely confused and made at me because I wont take her home. She is not herself. How can this happen in a week?
Teresa…My mom stayed with my sister for a month after hip surgery and when she was not in her own home she was confused. Returning her home made all the difference. Ruth
My Mother is 54 years old and suffered heart failure about15 days ago. During this she experienced “Sudden Death” in which until she recovers more from her physical ailments it will be hard to tell if she will fully recover her mental functioning. She seems to have this Sundown Syndrome at night of course and throughout the day. I believe in her case it is due to over-stimulation, and seems to be improving. She hasn’t been diagnosed with any dementia or alzheimers. I am wondering if this is something she can over come and what the family can do to support her no matter the outcome?
Dear Janice, My 84 year old mom underwent bypass heart surgery and suffered sundowner’s while in the hospital. I am here to tell you that she is doing great now. After a very brief stay in a rehab facility to build up her physical strength, she is now back living in her own home. I did not think this would be the outcome in seeing the extreme degree of confusion and delusional thinking she exhibited after bypass. It was explained to me that this syndrome is common after bypass, and in fact, many surgeons do not discuss it prior to surgery, as they fear many patients in dire need of heart surgery, might avoid it in order to avoid this common side effect. In fact, the nurse slipped and mentioned the nickname given this common effect as “pump head” Since your mother is so young and has no diagnosis indicating any dementia, and since you are seeing improvement, I suspect and hope your mother has the same rapid recovery that my 84 year old mother had. My mom is no longer driving, which is something she should have considered prior to surgery. Due to this inconvenience for her, she has made the decision to sell her home and, as she has paid for long-term care insurance for many years, move into a senior facility where she will live independently with many fine conveniences she doesn’t have at home until circumstances would change that. If that time arrives, she will be able to remain in the same home and move to assisted living care. Best of wishes to you and your mother.
My 90 year old Aunt has been diagnosed with Alzheimers. She still knows us but short term memory is shot. For some reason she has this “thing” where all of her clothes are now too tight and she started cutting them at the waist until she destroyed all her underwear and most of her nice slacks. We buy underpants 3 sizes too big that just hang on her hipbones (she’s 4’11” and 102 lbs.), she has soft cashmere sweaters that she lived in the last few years and now they are scratchy, and she works herself into a tizz (heart racing, clammy, panicy) thinking she’s restrained in her robe, night gown or any other clothes.
What is going on with her?
Hi, Sure sounds like a drug side effect. Do you know what she takes for meds?
Hello everyone,
It breaks my heart read all of your stories. My mom is going to be 79 next week. She has many health issues and is taking a lot of medications. Just recently she began to “talk” to me at night (I’m a teenager when this happens, I’m 51 now). She’s also been “talking” to my dad who died 17 years ago. She remembers it and tells me everything that happened the night before and very convinced that I was there. I’ve taken her to her diabetes doctor, she’s had a CAT scan of the brain (normal result) and I don’t know what else to do. I’m taking her to a neurologist next week hoping he can help us. How is Sundowner’s diagnosed? Can this just start out of nowhere? I’m at a loss…thanks for you help!
I am 33 years old and suffered a TBI in July due to choking. I have severe short term memory loss. I have written it down many, many times that I am clearer in the morning and get bogged down in the evening. The best way I can describe it is like a computer. The longer it is on and the more you surf the web the slower it gets. The temporary cache gets filled and this slows down your computer. Sleep for me is like dumping the temporary cache in your computer. I wake up fresh new and sadly empty at the same time. As I go through my day things become familiar and I can function faster and better, but I peak and the day slows down again.
My mom is 82 years old and 7 years ago she went into cardiac arrest and was without enough oxygen for up to 15 min. She survived but the memory loss from anoxia has been steadily getting worse. Then in June of this year her hip fractured and now she has almost total short term memory loss. She also has a lot of confusion at night and can’t sleep very well. She gets up often to go to the bathroom and will ask me when we are going to go home. This farm has been in our family for 100 years and mom lived here when she was young. She has lived here for 30 years now and it is very difficult to know that she has no idea where she is at night. I have noticed that this is much worse now that the sun goes down so early. She will come to my bedroom and stand at the door until I wake up and she will ask me where her boys are. Her boys are in their 50’s and have been gone from home for many years. Her doctor told me to give her a couple of tylenol pm to help her sleep and sometimes they work and sometimes they don’t. I’m taking her to the dr. in a few days to find out about her blood tests for her kidneys. She has congestive heart failure along with everything else and that could be why her kidneys aren’t functioning well or she might have a UTI. We will see what her dr. says. I am trying very hard to care for her and also go to college. I do this by myself as my brothers aren’t able or willing to help me. They have their own lives to live and I do understand that. Sometimes though, I do feel completely alone.
Hi Judy. After reading all the tragic stories on here yours rings identical in some ways to my father in law. He is 84 with Parkinsons and Congestive heart problems with Angina.
He has now been in hospital for near 3 weeks and the staff told us of Sundowners, hence found this site. Sadly he is totally on another planet now and constantly strives to be pulled up in bed and constantly grasps anything, bedrails, sheets, yourself if you close. He removes all his nightclothes and writhes naked on the bed. His language is now colourful and he says some very hurtful things. He looks as if hs is lapsing in and out of conciousness and carries out many of his actions with eyes shut. He was discharged and was home for 2 hours before we called 999. He has progressively deteriorated over the last 4 days and he always starts getting more agitated around 5pm and that is it till he sleeps. We left hospital 1.15am the other morning.
So sorry to ramble but this is a really painful thing to witness by my wife and myself, let alone his wife. It is a dreadul condition with no answer sadly. My heart goes out to all who have need to leave a story on this forum.
My Mom is 84, and up until 6 months ago lived alone and did her own cooking and laundry. She had a fall and we found out she had a bad UT infection. But since that first fall she has went rapidly downhill, both physically (cannot walk unassisted any longer) and mentally. She has been diagnosed with dementia and sundowners, but has no other medical issues and takes no medications. Recently she has become more lifeless and is almost always sleepy. She lives in a memory care assisted living now, as she fell 4 times because she forgot she couldnt get up and use the bathroom by herself anymore..It just seems the doctors all tell us the same thing..age, dementia, etc etc..she is going through alot of pain from being in a wheelchair and not moving enough. She is almost like a ragdoll, just barely able to sit upright. It is painful to watch her suffer so we try to bring her favorite foods, etc..it is a tough road alot of us babyboomers are walking right now
I am a caregiver for my 78 yr old mom with dementia and have been for the pass 4 yrs off and on but now I have had her for the past 5 months and her guardian. I need some help I cant do this anymore she has sundowners goes to adult day, she doesnt take her meds so I crush them and give to her, I am at whits end I have gained weight smoke more than ever have no life no friends and my own family wont help. I feel I need to let go and place her but she only has medicare and medicade wavier I cant find nothing all this has affected my health and my dr tells me stop let go U me will not live mom will. At times I just want to help mom and cant see her in a home nursing homes say no assisted say no mom needs dementia unit, mom is high functioning but the dementia is bad she argues with me wont take bath wash I have to do everything I work but now thats limited and my income is suffering. I need advice please help me
I read the stories of people with sundowners.It breaks my heart to read all of the ordeals you all go through with your love ones.We are going through the same thing with our mother she’s 81 years old.She has not been diagnoised with it yet but shows all the signs between 12 a.m. and 4 a.m.Her hospice nurse told me about it this morning I never even heard of it.I pray for my mom not to have this cause it sounds like no fun for the person and caregivers.There only me and my two siblings and our sister-in-law and our niece that are caregivers for her.I’ll keep all caregivers and people out there who dealing with this diease in my prayers
I would suggest that you begin by calling the Alzheimer’s Association at 1-800-272-3900 and tell them that you need support. They are a wealth of information. Also, you said that she has a Medicaid Waiver. Does she also have Medicaid for her medical coverage? There are some Memory Care facilities that accept Medicaid. There are also caregiver support groups. Others that have been through this will be able to give you ideas. You cannot let your own health suffer trying to take care of your mom. From what you’ve described, she is past the point of being cared for at home. Memory Care facilities can be wonderful places. Take care and good luck.
My dad just turned 80 yrs old dec 9. He has a list of medical problems one is what they call sundowners. At night he get confused disoriented. He wanted to use the bath room and refused to said the floor was flooded. Their was not a drop of water on there floor. One night he was petting his dog his dog was at home he was in the hospital. A number of times he got very violet to the point of hitting me that was the first time in my life he ever laid a hand on me. He was seeing people with rifles outside his window trying to kill him he was on the 4th floor.
My father in law just turned 88 and has been experiencing sundowners for about a week. He has transgressed very rapidly over the few days. He has trouble walking as he has diabetes and a balance problem. This accompanied with sundowners is a difficult problem to handle especially at night.
He was a very brilliant man and taught Calculus and Trig in college. He also taught one of our Presidents.
I can tell he tries very hard to remember things but they don’t come to him very quickly. He sometimes can’t remember his Grandsons or Grandaughters names that he is very close to. He has always been so kind and it is hard to see him like this. We are working to make his life as comfortable as possible.
I think my 88 year old mum might be showing similar symptoms, confused, emotional, odd behaviour at times, I agree this is very difficult to watch when they have been so capable. I like you do all I can to keep her happy and content.
This is my first visit to this site. Any help is appreciated. As a 4+ yr caregiver to an Alzheimer and COPD patient (who also has major dental issues); the sundown problems came to the surface at dinner on Christmas. Major concern from all family – the 30 min. ride home was not good. Thank goodness that the calming effect of meds helped after we got home. I have seen this coming on for some time and the meds will have to get stronger. I Wish everyone a better new year even though it will not be easy.
Not really sure…… My dad of 70 yrs had a quadruple bypass a yr and a half ago. My brother and I found him a rehab facility to go to afterwards ( one that wasn`t such a nursing home setting ), but the first night he was calling my other brother and telling him they were selling drugs in there and just all kinds of stuff. So that brother went and got him out and took him home. My dad is back drinking again and it seems when the evening gets here, he drinks and starts saying awfull things about people, running family members down. Altho different times of the day he can`t remember somethings he did back 15yrs or 20yrs ago, even further back. I live out of state and brother is trying to help with daddy, but I dont think he really knows what to do, look for, he is just taking it day by day. I s going to go to a doc appt with him soon. So what questions does he ask the doctor? How do we stop the drinking?? We dont know if it is something else or the drinking or both. My dad is really just a mess right now!! Confused! Someone told me he might have sundowner is why I came here. Thank you for any advice you can give.
Tammy you should not allow your Dad to drink while hes taking meds. Maybe delute his drinks because he wont know the difference. You brother should take him to see a neurologists and have him checked out,tell your brother to give the doctor as much info about his condition as he cabin and also what medication hes taking…
Many of the stories here. Seem the same even though they sound different. My 84 yr old Dad has sundowners and it is vertigo frustrating when trying. To deal with him at night. The neurologist today prescribed. Him olanzapine to help him sleep, I will check in laterand let you know.how.it works…
My mom started suffering from anxiety a little over a year ago and was taking Celexa. A couple of months ago she stopped taking it. A month ago she started having anxiety again. She paces from the front of the house to the back of the house, cries, screams, pulls her hair and causes herself to have heart pain. She has congestive hear failure and had triple bypass surgery 18 years ago. She has been to the hospital 3 times in the last week and no one can seem to help her. The keep giving her meds and sending her home where she keeps falling while my dad is trying to take care of her. I live 2 hours away so it is hard for me to stay there with them especially since I have a school aged child. I took her to a hospital that had a psychiatrist on duty and their preevaluation group stated she was not a candidate because she isn’t suicidal, she has a strong family basis, and she has no prior history of any type of psychosis. She is suffering and can’t get any relief. They put her on ambien, all she did was act like she somewhere else and never did sleep. They put her on Xanax 4 times a day and it helps during the day, but when it gets dark, she is a whole different person. The gave her Seroquel and still no sleep at night. I just don’t know where to go or what to do.
Any ideas? She lives in a very small community with limited resources and the other caviat is she becomes more panic stricken while riding in a car.
I just don’t know what to do.
Stacey
Checkwhat I wrote below…
It seems to me that doctors are extremely quick to prescribe strong drugs that effect the mind. I have decided to go with natural products as much as possible. Find a good health food/natural supplement store — a reputable one and check out natural alternatives. One such product that I am trying is called NutriZac — it’s main ingredient is St. John’s Wort. The NutriZac (300 mg of St John’s Wort) said one a day, but a little research online said you can take up to 900 mg of St John’s Wort, so I increased her dose to 3 a day. Don’t take my suggestions, talk to your local Health Food Store specialist and then follow up with a little research online.
Melatonin is good for sleep. I have also been told that Valerian Root is good for Sleep and Anxiety — I have not used it yet, but have it in mind for the next time I go to the Health Food Store.
None of have the answer, but if we keep trying I believe there are options better than prescription drugs. Please know that healthy alternatives do not work as fast, but have fewer bad side effects!
Wishing you the best!
Mary
Stacy, my Dad slept through the entire night last night after he took olanzapine so you might want to try that also some quiet music while she sleeps may help too,good luck
Tom –
thanks for the information, she has been admitted to a hospital due to something unrelated to the sundowners so hopefully we can get her quiet during the evening while in the hospital so we can make her life so much better.
Thanks again for the information, though.
Stacey
My mom is diagnosed with alzheimers and lives at home with us. We have seen a slow but steady decline for the
past 6 years (she’s 82 now). Yesterday a nurse came to do an assessment of her, and told us she is having
sundowners syndrome. I never heard of this until yesterday, but all the symptoms are there. Mom was always
restless at night, but now it has gotten almost unbearable. We find her out of the room totally undressed and
standing in a pool of urine (she wears diapers). We have tried limiting her fluids at night and making sure she
goes on the “potty” before bed. She has fallen out of bed 4 times in the last 6 weeks. We have taken out the
bed frame and have her mattress and box spring on the carpet.
The nurse suggested we ask the doctor about Seroquel, but when I read the warnings I am very concerned.
I’m wondering if anyone has tried it. Also, my mom has taken to chewing on her fingers, sometimes making
them bleed. We have tried everything to keep her from doing this. When I bandage the finger, she takes
it off. We have tried mittens, and taped them around her wrist so even Houdini can’t get them off…she does.
Anyone dealing with this behavior or have suggestions? I appreciate any and all advice.
Joanna, you might want to try putting gloves on her hands to prevent them from bleeding. I’m
not sure about Seroquel my. Dad takes Olanzapine and has been feeling good so far. Ask you doctor about getting a sleeping med for her…
Seroquel sure has worked for my mom. She has been on it 3 years.
http://www.cbn.com/media/player/index.aspx?s=/mp4/LJO190v1_WS
Check this out.
Best Wishes!
My wife has been prescribed two different anti-anxiety drugs for her sundown syndrome: at night, she takes a mild alprazolam(.25mg).
She is awake a lot but does not get out of bed and does not get the ‘nervous’ reactions to nightfall. In the am, I give her one/half of the drug: clonazepam (.5mg) – I found that if I gave her a whole one, she would sleep most of the morning. Hope that these help.
Thanks for the info Ken…
Hi
I had a 69 yo male patient that was a rule out for a CVA, MRI and CT were negative. He had complaint of right arm heaviness and numbness and right neck pain. He was confimed for a CVA about 6 months earlier with no risidual deficets except thought disorganization and on his NIH scale I noted some agnosia. He woke up the second night of his stay and was out of the bed when I went in to do my assessment. He did not know who he was, where he was or what time of the day it was. He wanted to use the bathroom, he was fully ambulatory with no deficites of ambulation or uppper extremities. There was a change in his personality .He was much more animated and flirtatious with the nurses as well as using foul language. He did not know his wife’s name, where he lived. or his date of birth. I called a code stoke and he was sent to CT which was negative (no changes). I gave report to the oncoming day nurse. Later that day his was discharged home in the care of his wife. He apparently had some improvement of memory during the day but still could not recall his date of birth or the date and year. The docotor put him on Aricept and sent him home. I am at a loss. I have NEVER experienced such and had a MD send the patient home. Of course he could do his own ADL’s and was safe as far as a PT/OT consult would consider. Could alzhehimers come on so suddenly? I called his wife after the event and asked her if he had ever had such an episode which she denied. She also denied he had any hx of ETOH use or abuse. I just found this kind of crazy.
From my own experience I say answer “yes” to your question. In the early stages of alzhehimers it seems that in some cases it comes and goes. For instance my Father can have it and in the next minute not even look like anything has happened to him. I would at least suggest that he has an early start of dementia at best and it seems like he is having small bouts of alzhehimers too…
My mother in law was just admitted to the hospital ,because of what we are being told is sundowners, and has been made a ward of the state. We are being told that we can’t do anything until the hearing next week. In the mean time we are trying to learn as much as possible about this condition. She is very lucid and aware of everything around her, but at night she swears that people are living in her attic. Is it normal to change that quickly? You can sit and have a normal conversation with her and then in the next breath she will tell you about the people living in her attic.
Jake, it comes and goes quickly and other times it may last for hours. The best time to get info and communicate with them seems to be the morning but as the condition gets worse the “sane” window gets smaller and smaller. Becareful with what the State does to her and be sure she gets the proper help, my Dad was given an SRI (anti-depressant) drug that ony seemed to complicate things more. We are still trying to get him off of this drug…
So true on the anti-depress meds!
Serotonin Syndrome (from SRIs, stimulants, and some sleep aids like trazodone) can certainly mimic sundowners. We’ve been trying to wean my mom (age 75) off some of her meds to see just how much it is contributing. My mom also has hallucinations and paranoia about people coming in to rape her or poison her…..only at night or early morning.
My mom is also narcoleptic, and she has both cataplexy and hallucinations.
One thing that has REALLY helped is the CPAP machine. She fights it because with no short term memory, she’ll wake up and not know why she’s wearing it. Even three hours a night helps. So many people that are post stroke or have dementia also have sleep apnea.
Wishing you well,
Lorri
Yes, it can hit that fast. Mom’s was triggered by hip surgery. Anesthesia started it and then it continued from being in the hospital’s unfamiliar surroundings. Once she was home with Dad she greatly improved, but never fully recovered. Seroquel has helped a great deal.
Grandmother gets sundowners syndrome and her diet seems to play a big role. Days where she gets candy or anything with corn syrup all hell is going to break loose in the evening. The days she eats, for example, waffles with home-made brown sugar syrup the evenings will be fairly peaceful. I’ve been documenting this fact about corn syrup, but most other people say I’m the crazy and then hand her a candy bar. And it’s not only candy, but anything with corn syrup, such as jam or otherwise what might seem healthy food until you look at the ingredient list can have similar effects. She is 92 years old, doesn’t take any medications and good health, except for the dementia.
The sugar could be an issue let us know the complete results. My wife and I were also
Thinking that maybe the darkness outside also. contribute to the condition…
Every case is different, but with my grandmother it seems not so much with the darkness, but with her bed time. She goes to bed around 7pm and the sundowners starts about two hour before. Winter months it is dark, but summer months it is still light. Then she will get up around 9 pm for something to eat and is calm as a lamb. She is only crazy for those two hours before going to bed running. On the corn syrup days she will get mad, slam doors, and generally irritated. On the good days she is just running around but with a calmer approach to things. A common theme is searching for her cats that she had 30 years previous or making sure the doors are locked over and over. During the day she can remember who you are, but at night will confuse names and faces. Sometimes she will wake up in the middle of the night and search for her babies or a couple girls she has imagined live there, but is more confused than upset.
My mother in-law is 96 years old healthy, stayed by her self until year ago, we were afraid she might fall at night so each of her boys and I stay the night with her, I have noticed changes in her she sleeps a lot during the day then wakes up thinking it is morning and get angry if I tell her it is 6:00 st night, She says sometimes where are the child going to sleep and I explain that she and I are the only ones here, she gets angry I keep telling the family there is something going on with her so took her to the doctor got her on depression mess. But things haven’t gotten better they want her to be in her home, can anyone give me advise to help this loving women she thinks she is going crazy
My mothers anger and debilitating inability to balance her checkbook is driving me mad. She fly’s into rages and chases, hits and threatens me with knives. She is 72 years old and blames me for everything wrong in her life all day every day. I recently moved home after being away on my own for 25 years. I am worried that it is Sundowners Syndrome. She has always aimed her anger at her only child to which “ruined her health and robbed her of a life”. I am the trigger, all I need do is enter a room and the war commences. I have been cataloging and recording her outbursts for the better part of a year now, and the only thing that fits is Dementia/ Sundowners Syndrome. If there are 70 different recorded dementia types recorded; how can you choose the one right for the case? She will not seek help for her condition and becomes combative at the mention. She has Dry Macular degeneration, diagnosed a few years ago and has been in an eye study from the diagnosis date. Of course it is unknown whether she is in the drug trial or the placebo group. She slips in and out of depression stating she is going to blow her brains out, and other days paces the house complaining she can’t get anything done at a maddening pace. Should I try and have a conversation with her Doctor or seek help from social services. It’s hard not to take it personally when she tells me how horrible she thinks I am or that I am stupid and worthless. She is a kind person to everyone she knows except for me. I want to walk out the door and never look back, but she is my mother and I love her.
PS: I am at my wits end and examining exit options. Can someone please advise me as to what to do?
Kevin, I am sorry we missed your post, Call senior services if there is one in the area, and let someone come in to help, so they see her behavior. Call social services, if you need to. She is a danger to herself and others. Talk with her doctor and play a couple of her rants for him. I hope you find help.
Try this for the dementia:
http://www.cbn.com/media/player/index.aspx?s=/mp4/LJO190v1_WS
My mother has the dry macular degeneration -get some Preservision from the drug store. Be cautious with the drugs – doctors wanted to put my mother on Prozac and Schizophrenia meds – I thought that was way over the top.
This is all very difficult for everyone on this page, but this is definitely NOT YOUR FAULT – so just know that.
Wishing you the best!
My father who will be 89 suffered a brain anuerysm and had a stroke. He was in the hospital for 2 weeks and seemed to have good days and some very bad days. We were able to move him to a nursing facility and he does have sundowners, in the mornings you can have a nice conversation with him but gets worse as the day goes along. He is on Seroquel (sp?) but that has not helped much. I know that he will not be able to stay there much longer and my Mother will not be able to take care of him , I live 2 hours away and am raising my 10yr old grandso after the death of my daughter from epilepsy. My parents have Medicare Complete which Im not sure will pay for his care. We are at our wits end knowing what to do now. He does get very angry and mean at nights. He also cant stand or walk on his own now after the stroke. I talked to his nurse tonight and they had to put a catheter in him because he could not urinate. I hope someone could give me some suggestion on where I can go for some help or some advice
Have you talked to his doctor and the social worker. He sounds like he would qualify for nursing home care to me. Ruth
Viki – We had the same situation with my father. He could not return home once he landed in the hospital. My mother is 85 and her health was already run down from trying to care for him at home. The social worker and doctor at the hospital were able to set up a bed for him in the nursing home of our choice and my mother took steps to apply for Medicaid for my father. Depending on your mom and dad’s financial situation, he may be eligible for Medicaid. Your mom should discuss this with the social worker. I live 5 hrs. away and it’s difficult to get to see them, but I try to get there once a month for a visit. If this goes on much longer, we are going to try to bring them both down to us if my father can make the trip. Time will tell.
Kevin – Do you have an Office for the Aging in your area? You need help and your mother needs evaluation. The Office for the Aging will send in a qualified nurse to come in and do an evaluation. There are definite safety factors both for you and your mother that need immediate attention! Call for help – that’s what they’re there for.
Three years ago I took my mom to the ER hospital because she was walking crooked and talking off the wall. I thought maybe she had a stroke. When they finally got her in the ER, they ask her is she was in any pain. She was not. She was in a-fib and fading fast. Months earilier she kept falling. She hurt herself several times and was black and blue. She just kept saying she was a clutz. She did have some type of pnuemonia but also the a-fib. First time anyone had ever told her that. Sometimes when she wasn’t feeling well, she would babble, making no sense. Now she forgets things, and she is getting up in the night to answer doors, telephone calls, etc. She gets up to eat because she says she is hungry. She fell again this time with a knife in her hand. Called the ambulance. They said all was ok. She could not remember any of it the next morning. My mom is in her late 70’s. I feel like I am dealing with Sundowner’s/ dementia. I don’t know if the dizziness and loss of footing goes along with it? She says when she moves to turn from one side to the other she just blacks out. She insist she needs Ambien to sleep at night. She is on blood thinners also. My mom comes from a family of the most strong willed and hard working women you will ever meet. I notice she gets angry when you try to insist on anything, espcially at night time. My niece stays and lives in the basement now, but she has her own family. I am not sure what I should do. Any other doctors anyone could advise I see? Any help would be appreciated. Thanks
Connie
I have been dealing with sun-downing and dementia with my mom for just over a year. As the dementia progresses rapidly, the sun-downing becomes worse. She does not sleep for any length of time no matter what med combination has been tried in the nursing home. The nursing home cannot provide the one on one day and night care she is requiring. They have been requesting a psych evaluation which I have objected to strongly. My thought: why put her through that when it would just frighten her more.
As of today, there is no choice, as the sun-downing is getting worse, mom is striking out now and becoming extremely aggressive and nasty. This comes on late afternoon and through the night. Mom is being transferred to a geriatric dementia nuerpsych unit of the local hospital for a full evaluation. The nursing home must hold her bed for 10 days and this is covered by medicare.
Perhaps your loved one needs a geriatric dementia specialist as well.
I wish you well. This is such a nasty disease.
Donna
Connie Norton – My mother is 85 yrs. old and has a-fib. She had to have a pace-maker put in to control her heart. She would faint at times and wake up and know she was ‘out like a light’ for a while.
As far as the sun-downing, for me I have experienced this in my father and my sister. Neither one experienced this while at home. Both had to go into a nursing home for different reasons and this is when they started sun-downing. It is exasperating at times, but the nursing home handles it quite well. I stayed with my sister in the nursing home before she died, and I witnessed this at night with her. We never argued with her when she insisted on coffee and cookies at three in the morning and she thought it was the afternoon. She would argue that she should be getting breakfast, when she was receiving dinner, but we never argued. We just corrected her and got her attention off the problem that was bothering her. She was not as extreme as some that I’ve read about on this site, but she did have her moments. My sister died of a brain tumor. My dad is still alive and has parkinsons. I would say that confusion is the root cause of them acting out. Some are more belligerent than others. It’s scary at first, but for me and my experience, it subsides after a while and there are drugs that usually take care of the problem. They just have to try different meds until they find the right combination.
My husband is 58 and becomes drowsy and talks nonsense in the evenings and at the dinner table. its very upsetting for the kids, aged 9 and 7. Its lonely for me because I have no-one to talk to in the evenings, and I am only 43. He has suffered depresson in the past, he has a very stressful job, he’s overweight and drinks too much (around 1.5 bottles of wine every day). On top of this he denies it when I tell him he is being incoherent. I get angry with him and we have been fighting lately. I want him to get help and I am worried as he is the breadwinner in our home.
My dear, you are in a bad situation, arguing with him will not help.. You need to quitely start making plans , something is wrong, You need to speak with his doctor, but when you do this, things can get worse. Are there guns in your house, for some reason I want to ask, just make sure they are removed from your home. Give them to someone you trust. Drinking and mental illness don’t mix. Don’t argue if you dont have to .. I have to run out.. I will be back in a while, I have you on my mind. Together , maybe we all can come up with a plan for your safety and his health. God bless you.. Lynda
Incoherent people do not know they are not making sense and nothing you say is going to change it, You need to speak with his doctor. Stop arguing with him, try to find an outside person, like your doctor to listen. If you can quitely record him, like use a pocket recorder, then you can share with his doctor. It may be something medical like a tumor, it may be early alzheimers, It might be some form of mental illness, but it is something. Be careful how you approach this. Start working to pay off any bills you have. If it is something that you can not get diagnosised now, take this time to plan. Don’t confront him, talk with your doctor about what to do. You need someone locally. His doctor, does he have a brother or a man friend who might notice the problem, you could invite over. If you go to find help remember that once this process starts he will go through an angry stage, till they find out what is wrong. Please keep in touch. Do you have a family attorney you can talk to , that will not tell him what you are doing. be safe.
Lynda
Your husbands drinking will effect any medication that he might be put on, so it’s important for you to wean him off this slowly. Be careful that his depression is not confused with Alzheimer’s and visa versa…
My dad is 89 going on 90 in March. He has had Alzheimer’s for at least 4 years. In December of 2009 he was little more than a vegetable asleep on the sofa. That Christmas I read the research on caffeine treatment for Alzheimer’s and started him on it that morning. By evening he was up off the sofa and joining the party. We estimate he improved by a year and a half but what’s even better is that he has not gotten any worse in all that time. We also tried the niacinamide cure and got further good results with that but unfortunately had to stop it when it caused him to itch. Now we’re starting him on coconut oil expecting even better results with that. Conventional medications did him no good at all so I’m glad we found somethings that do work. I’m interested in Sundowner’s as I think it may be a key to figuring out the cause of the larger disease. We do notice that dad dramatically improves for several hours after being out in the mid-day sun.
jskrepak@mail.com
Wow, wow. I am sitting here reading all these terrible stories about the elderly. I found this site after reading that Gordie Howe, an old Red Wings great, is suffering mildly from dementia and Sundowners. My friend’s mother has very bad dementia and Sundowners and my friend is about at the end of her rope, yet cannot bring herself to institutionalize her. I am 73 and quite honestly am scared reading about all the bad stuff that could come my way in the future. I come from a very long lived line of people and not one has suffered from dementia that we know of. Thank God for that but no guarantee, eh? I feel for all the people struggling with these end of life issues and wish each one God Speed.
My husband is 64 ,a viet nam vet with exposure to agent orange, diabetic, high bp, and cholestrol,has head trama,andover the last few years, ended up at the ER because of confusion, falling out of bed, unable to get up off the floor without help,has a shuffled or unsteady gait, unusually sleepy, little tono memory of events most of the time and yet there is no dianosis related to his” spells” Its always a different answer. What should I do ??
Barb, That really stinks. There is a guy in my church who was also a viet nam vet and was exposed to agent orange. He has diabetes and trouble with his hands. I just did a search and there are alot of forums on line about agent orange and viet nam. I think you will find support and some answers there. Ruth
Seek specialist, Neurology, he is so young, also, look into endocronologist (spelling) if his gait is that far off, he may have a thyroid issue., unusually sleepy… sends to too neurology. I hope this helps, if you are in a small city, go to a big city, training hospital for your specialist. Hang in there, I know you have your hands full, take time out. Get help to come in when you can. God Bless.
Lynda is right, Barb you should seek help to find out why your husband acts this way. If he is currently taking medication this may make him sleepy or he may have the beginning of Alzheimer’s. It can happen at even a young age like 55 or 64. Falling out of the bed is a sign of Alzheimer’s and it is why making Nursing Homes place alarm pads around the bed of someone effected by this…
WOW……41 year old woman recently took over care for my 95 year old Aunt who was sadly stripped of her life savings and taken advantage of from a niece who was living off her SS checks with her husband.
It’s in legal hands so hopefully she will get her savings back.(Pray)
I moved in with my children and gave her the love and care she needed and deserved for 8 months now.
She is healthy as a horse,great blood pressure,great appetite BUT………..boy oh boy……crying all the time which i related to what her niece did to her but as i grew to her and her habit’s i know it’s the start of dementia and possibly sundowners reading all these heartbreaking stories.
We had our first real panic,crying ,trembling,shaking afraid to be alone fit tonight.She is up ALL night sleepless,moving furniture,back and forth to the the bathroom all night.
They had her on Zoloft but i think she was having horrible side effects from it.(i weened her off)
I am taking her to the Drs. in a couple weeks to try and get her something to sleep…..honestly….all the medications everyone has mentioned scares me to death!
This is more than i ever imagined taking on…I gave up my freedom to live with and care for her.
Should i be prepared for this to get worse???? Does it progress differently for everyone??? It’s very stress full because she’s never been as safe as she is now…..but she seem’s in constant panic mode.
anyone in a very close situation to mine has any advise about meds and something that has been effective for your loved one….i would appreciate any advice….We are at the beginning stages of all this i believe…
Thankyou
I’m so glad i came here…lot’s of good information
Personally I avoid prescription drugs after my mother’s doctor and personal friend put her on prozac and schizophrenia meds – I was shocked and stopped the prozac after 4 days, declined the other. Try melatonin from your local healthfood store for sleep and check out this website.
http://www.cbn.com/media/player/index.aspx?s=/mp4/LJO190v1_WS
Although the effects may differ abit for each person the basic disease is still the same for everyone as it progresses. And like some other people here I took Dad off of Zoloft and I’ve found that sleeping pills do help out some but always check with your doctor first. AlsoI would try to keep her up as late as possible this may help her sleep better but there are never real solutions, some days are better than others…
Has anyone heard or used Lecithin for the treatment of dementia?
First let me suggest coconut oil. Check out this websiite:
http://www.cbn.com/media/player/index.aspx?s=/mp4/LJO190v1_WS
Many studies have been administered to test lecithin’s effect on Alzheimer’s disease. Lecithin produces the neurotransmitter acetylcholine which enables communication and signal-transmission between brain cells. Alzheimer’s disease can be caused by a change in production of acetylcholine. Many speculate that an increase in lecithin will prompt brain cells to produce more acetylcholine, thus improving memory. Lecithin and choline have been tested to do this and neither has been proven to be affective. In most of these studies, a portion of subjects improved markedly, while others were not helped at all. (Zeisel, 334)
Lecithin “may lower cholesterol since lecithin is composed of polyunsaturated fatty acids, but studies have been inconclusive”. (Thrive Online) “Although it is clear that lecithin administration can be beneficial for humans with tardive dyskinesia (a neurological disorder), and although there is reason to believe that normal memory can be influenced by the choline (found in lecithin) content of the diet, evidence available at this time does not justify the widespread us of lecithin for improved memory by the healthy general public” (Zeisel, 323). The only proven benefit and suggested use of lecithin or choline supplements is for those whom are taking niacin or nicotinic acid to treat high cholesterol. The niacin treatment can deplete choline, so an increased amount of lecithin or choline is necessary in the diet.
I’m not finding anything great on lecithin, but that coconut oil is worth trying, in my opinion – I’m starting it on my mother.
Best Wishes!
Vicki, here’s some info that may help you out;
http://www.doctoryourself.com/alzheimer.html
Good luck and God Bless…
And good news, recent research has finally shown how the Alzheimer’s Disease spreads inside of the brain. This finding may help scientist discover a way to break it down and prevent it from spreading;
http://www.helpingyoucare.com/17870/alzheimers-spreads-in-the-brain-like-a-virus-new-study-finds
It is 2/8/12 – Mom had partial knee surgery on 12/6/11 – has never been the same – has to be restrained – falls, now Doc says it is sundowners…… around 3-4 pm everyday she starts taking the blankets off her bed, her socks, sees things, etc… will she ever come home to her house again? What meds do we need? She knows all of us, talks about her parents (deceased) – wants to go see them – I am at a loss…
Leigh each person with Alzheimers is treated differently for instance my father is on Nemenda and Galantamine but that is not to say this is what your Mother needs. It definately sounds like she has Alzheimer and sundowners (which is a phase of alzheimer). Find out who has the power of attorney and if no one this then get this done ASAP. This will allow you to ask questions about her treatment in the place where she is and also it will allow you to suggest certain treatments for her. In most states tying someone down is frowned upon in case there is an emergency in the building. She may be able to come to your home but then you have to ask yourself if you are able to care for her anymore. For instance my father was good enough to care for here months ago but lately it’s becoming a real struggle and he may have to be comitted soon…
I don’t really know where to start…..my mother has had emergency surgery about 6 weeks ago and has been in a rehab/nursing facility ever since. She is showing clear signs of depression and sundowners syndrome as well as hospital psychosis from what I have read and done some research on. However she is in full on denial about all three things? She is on a mild form of antidepressant called remeron? The rehab places psychiatrist recommended she be on after three evaluations and to increase her appetite as she is barely eating. My mom is only 68 yrs old and acts like she is 90? She also has menears disease (spelling?) which causes sudden attacts of vertigo and she has fallen a few times and actually broke some vertibraes last summer and had less invasive surgery then but recovered faster. Her current Dr. Says she has babied her body so much since then due to her fear of falling and depends on a walker to much that it has caused her muscles to start to deteriorate and atrophy and said she has the body of an 85 yr old women because of this. But currently my main concern is her constant confusion as the day comes to an end. When you talk to her she seems to make perfect sense but gets so confused and contradicts herself constantly. And the lies shes telling everyone from me to the Drs and nurses and even her sister who is now the one there with her helping out. I live in Texas and she’s in Florida so I was there for a week. Nevertheless I continue where to turn she’s refusing help from everyone today I had a psychologist go to her to see her and she thought she was a physical therapist etc. Long story…..can anyone give any guidance. Her personality has changed and it’s like my aunt and I have to tip toe on egg shells with everything we say and do with her and now there releasing her on mon the 13th because physically she’s fine? Psychologically not at all! Any insight or advice anyone has would be greatly appreciated!
Hi! As I am reading this I am really curious to know exactly what my 82 yr old mom really has, she has suffered from two strokes in the past 4 yrs, before that she was in perfect health, she took no daily meds and tylenol worked for minor aches and pains. since her first stroke she has been put on 12 different medications and it seems like the drs are prescribing more daily. This past summer she suffered another stroke which was caused from some idiot dr who prescribed her 1000mg of muscle relaxer and an extremly high dose of vicodin after being admitted for overdosing on meds she suffered a stroke (a bleed not a clot) anywho, while she was in the hospital on the sixth floor she would call me first thing in the morning to tell me that she was being held against her will and that the people there were trying to kill her, she refused to take meds the nurses would give her, she would spit them on the floor when they would leave, at one point she wrote notes ( she believed the nurse told her that they came to my house and took my phone away so she could not call me) and tried to figure a way to break the window and throw them out, in the hospital it seemed to be an all day occurance, she knew everyone in her family and her normal adl’s but she truly believed she was being held captive, she went as far as to tell me she had been discharged and for me to come pick her up, once i got there she is ready with papers and her coat. I figured she had been discharged until half way to her house that I had gotten a call from the charge nurse wondering where she was!!!!! Things seemed to get better once she was back home and it has been sometime now but the other day I took her for lunch and she told me of her “visitors” at night that wake her up, she tells me that she wakes up to go potty and there are four people who she does not know sitting at her dining room table, she thinks they are there to visit but just not with her, she wonders how they get in the house and gets aggitated when they will not answer her. She believes they are playing tricks on her, the other night she told me the girl that was there stole her teeth and hid them under her pillow, other times she gets aggitated and yells at them to stop stealing her furniture. After she told me this I told her that I believe she has sundowners, since i told her this her visitors have not been back, but she did tell me today that there are times during the day that she thinks my brother and me are playing on the floor, she thinks that we are little again, the weird part (ok weirder part) is my brother is 14 yrs older so we never played as little kids and we are now 38 and 52 so….I am concerned and confused, is there anyone out there that knows what this is, I am thinking she is on way to many prescription drugs!!!! or is she seeing ghost!!! Help please!!!!!
It sounds like she may be starting dementia and sundowners but I would suggest taking her to a neurologist for a diagnose before getting her put on any more meds. Being “combative” sounds like alzheimers but the doctor would be able to tell you this for certain. Her regular doctor should be able to get you a referal for the neurologist and be sure to go with her and ask any questions you have about her condition and her meds…
My mother was diagnosed a year and a half ago with full blown dementia. She had brain surgery for too hypotonia’s . Which she was falling and not letting us know. I as her daughter brought her ome with in- home care knowing I could care for her, she’s my mom… Well 21/2 to 3 weeks went by and she became mean,accusing me of awful things. She wasn’t sleeping she was up all night. Moving things hiding things. I called the doctor they gave her sleep aid and I can’t remember the other prescription . But it seemed to work for about 2 days. Than for 7 whole days I stayed awake for fear of her hurting me. I called on the 7th day The CSB I Believe that’s th service , but the was nothining they could do she hadn’t touched nor threatened me, but I don’t know why I knew she was going to hurt me. Around 11:30 that evening she did. I call 911 the hardest hing I’ve EVER done. Or had to do in my life. Have a sister & brother, they haven’t even contacted me for nothing . I have had o go through this totally by my self. To make matters worst I was in an car accident in aug 2010 rear ended, still today I’m going through that was Disabled on Aug 26 2011. My Mother has been in 2 Assisited Living Facilities , just when things were coming together she took a fall Jan 8 2012, another hematoma and a fractured eye. Now they made the decision of her having to go to a Nursing Home with Hospice Care. From the accident my legs will just give out occasionally ,this time I took a hard hit to my left knee and back which I already had servers problems. Mom now is going through the up all night deals and going none stop they upped her meds and she still goes like the Energizer Bunny, she’ll be 87 this year & I’m all alone and their talking about 24/7 care. I can’t afford that my husbands income is all we have. Does anyone know of some kind of help to help me watch her more. I’m so confused, heart hurting for my Mom, I’ve lost her once now I know I’ll lose her again but til that moment comes I want her to have as much quality of life possible. My friends do occasionally help, god has helped me there but not as much as she is requiring…. I’m from Hampton, VA. If anyone has any ideas or knows any kind of help, I’m greatly in need as I’m sureI’m not alone would be Help. GOD BLESS ALL OF US…. Carolyn , HAMPTON, VA
My mother now almost 89 was very lucid 2 years ago. She had total hip replacement and the anesthesia made her very confused, hallucinating and not recognizing us. She thought she was at the doctors and far away places she had lived at. She had two more surgeries and the last one in August made her not only confused but with sun-downers. She is now almost having no lucid moments. She screams and calls for her mother, father, siblings ( who are gone) and for my sister and myself. She lives with both of us, we take turns. She came today to my house. She took a pill to sleep but calls and screams as if in pain. During the day she sits quietly and talks nicely. My sister was ready to explode caring for her. i am going to school, teach a class and have to take an exam and write a thesis in the next few weeks and months. She is taking Haloperidol 3 X a day and 2 unison at night. Tonight she could only swallow one. I am not sure if there is something I can do at night, should I ignore her calling everyone or screaming , Imy sister said she will not get out of bed. She has rails. She is on a walker and walks a little wobbly. I need to get some sleep so I can do my work, but i am afraid to ignore her, my sister said in the morning she is better. it has been inspiring to read and know that so many of you are in the same boat. I remember my Mom staying up nights with us children many nights with an ear ache, sore throat, mumps, all the childhood diseases and I am happy to care for her as she holds my hands in gratitude and sometimes shows a smile. I tell her “where is my smile” and she forces a smile and makes her feel a little better. Good luck to all! There is someone up there greater than us all, I feel that there is great strength to draw from someone I believe has gone through all of our pains and it gives comfort to know that.
Ceci, asa your mother’s caregiver you need to get some sleep too. Something that you might consider is to keep her up as late as possible before bedtime. Playing some soft music seems to help also, my Dad’s listens to orchestrated music (Big Bands are too loud for him). Some other suggestions for yourself (and everyone else here) is to get a strong railing in place, this will keep them in bed and prevent any midnight walks, also if there is an issue with stripping the clothes off be aware that there are places where you can buy clothes that zip up in the back, this prevents them from taking them off at night. Try to prevent them from taking daytime naps because this will only allow them to stay up more at night. As far as the anxiety goes we have had some success with Xanax (.25 dose) and use this right before bedtime. Hope some of this info helps folks here and take care…
It is nice to hear that we arent the only family going thru this but I wouldnt wish this pain on ANYONE!
wow this is my papa to the T and not one dr or nurse has said one thing ever about this. my family thinks im lying about his symptoms because they never see him in the evening and assume im trying to have him “put away” when now i know this is a real disease involved with his parkinsons and dimensia! thank you!
Yep… its real… My dad is fine during the day… sleeps a lot, but when he is awake, he knows pretty much where he is… as soon as darkness hits.. he is WIDE awake and is completely confused as to what town he is in. My daughter works in an assisted living place, and after two days here, that was her first comment…. He has Sundowners. We are going to the DR on thursday to talk to him about this and what we can do about the Anxiety that is involved with this… I don’t think your lying at all. I took care of my Grandfather who had Alzheimers and it was the same thing… A lot of wandering at night and day time sleeping. Unless people spend at the least two or three days… all day and night… they have no idea.
Take care with prescription drugs – do your research – consider having a conversation with your local health food store – find someone who knows the benefits of alternative herbs.
Xanax worked well for my dad’s Anxiety Ebby, maybe you can try that. Be sure that he has a bedrail to prevent any falls that might hurt him…
I care for my mother; she has Alzheimers, and a history of heart disease (two quadruple bypasses).
My sister purchased a machine that that plays nature sounds (nighttime, forest,etc.). The ocean waves works so well for Mom; soft, repetitive. The bonus is, one less pill, with whatever side effects. It has totally replaced her sleeping pill, which caused her to stumble on her nighttime bathroom breaks, and be logy in the morning.
I hope this works for others. Our older loved ones need sleep, and so do we!
I was doing a little research as I am writing about the events of last year, primarily as a catharsis as I move through the grief process. What is written here about Sundowner’s describes exactly what I went through with my mother. She died from cancer last February but in the five and a half years from the diagnosis of cancer until she died last year, I was with her as her primary caregiver and she exhibited numerous symptoms of depression, dementia, and sundowner’s. While she exhibited confusion at other times of the day, it was most pronounced after sunset and especially if she was not at home. I could cite instance upon instance and since I was with her 24/7 and she was able to “cover” well (except after dark) in the presence of other people, others frequently didn’t believe me. This even includes health professionals. My heart goes out to anyone who is living/has lived with what I lived with for those 5 1/2 years. Thankfully, I also found a support group for caregivers of Alzheimer’s and other dementia patients. These support groups are invaluable if you can find them.
Jo,
I am grieving terribly as I just lost my mom to complications from cancer treatment. She was diagnosed seven years ago, and had a recurrence in August of this past year. After completing chemo and radiation, two weeks later she began staying awake all night. She would moan and yell sometimes. It happened out of the blue. I did not have any idea what was going on. Is this part of the process before a patient passes away? I am still not sure what happened…it was all so fast.
Thanks,
Patti
My elderly mother has dementia & is in a rehab center much like a nursing home except for the therapy. She cannot seem to wake up today. She even falls asleep while eating & must be roused. She was this way in the hospital for 3 days last week. The last couple of days, before she slept all the time, she became agitated & restless in the late afternoon, insisting on leaving the room. This was highly unusual for her. Could this be Sunddowners Syndrome? A friend said her mother-in-law was diagnosed with this and slept almost continually also.
Make sure she is drinking lots of water – ask her dr. how much she needs and have staff measure her intake daily. My mother’s symptoms are doubled when she is dehydrated – and it has put her in the hospital, where at least she is on an IV and they do a blood test to check her levels. Elderly lose their sense of thirst and it is a reasonably easy fix if you can get her to drink. Dehydration presents both with dementia and lethargy.
It seems only logical that it must correlate with one’s circadian rhythms. Which occur in the evening. Maybe narrowing of air passages or some other circadian occurrence.
Keep them up during the daytime as much as possible and be sure that any meds given are not contributing to the daytime sleep…
My mother recently went into the hospital for the flu but developed pneumonia. It got pretty aggresive within 24 hours so the doctors used medication to keep her under and try to drain her lungs. She was under for 4 days. She has the same symptoms and the doctors called it Sundowners.The doctor said it was temporary but gave no time table and one of the RN’s said it was not reversible. Have you heard if this is true?
I think you will find that your mom will improve when she gets out of the hospital. However, I think you should expect more episodes in the future. It’s difficult, but relatively common. Be planning for some type of caregivers in the future — family, church family or friends are best, but there are services. Beware because some are not trustworthy and the elderly are as vulnerable as children.
i am on thyroid med and it took years to get it adjusted…the thyroid controls almost everything in the body…andi have had to study nutrition for years to figure out my own problems. no one has mentioned that old people often don’t eat right…i got so tired i wanted to die…dr. checked said i was enemic. i tried iron and found i not only had energy but my memory was better..same thing with d3 which is the sunshine vit…if i go for 3 days without it i can’t remember anything. my dr. said that older people do not absorb vit and minerals as the lining of the bowel gets thin. I am now eating lots of beef and taking iron every other day…it is very constipating so i have to take magnesum . I am now in the process of learning which veg. have what vit and minerals and got me a juicer. allergies also play a large part , if they are glutun sensitive, wheat, rye, oats and corn, and eat it for supper or lunch, could that be the problem?…i have about given up on dr. and am going the nutritional way….Zink makes u dream, and u do need to do that and time seems to have little meaning to me and all my friends…over active thyroid, graves disease, can make u halucinate, been there, as i was given too much med when i first started.. also makes u paranoid, and A,d.d.. they tried all kinds of med…nothing worked, so finally i went off all and started reading about nutrition. .older people will also tell u they aren’t hungry…give them iron that will change!!! check their teeth…pain makes u crazy and will also keep food from digesting properly. if they have badder infections give them cranberry pills.. or drink cranberry juice.,or grape..not the apple they add ascorbic acid to it..works in 2 days…in most cases. antibiotics will make an acidic condition and the body needs to be alkaline. bacteria won’t grow in an alkaline condition…search all these things on the net…i did and talked to the people at the health food store, bought books and found a dr. that believes in nutrition. hope i have been of some help..email me if u can’t get the info..i do find that too much stimulation keeps me from sleeping…i also take melitoin…body is suppose to make it at night…older people do not make it or not enough…then we stay awake until we are exausted.. NO SLEEP, NO BRAIN!!!. .par6197@ yahoo. com.
pat, thanks for the info and also don’t forget that Alzheimer’s patients often contract UTIs (urinary tract infections) which can cause alot of issues. As for folks having a thyroid condition most doctors will do a blood screen/test to check the patient before the prescribe any meds nutrition can help but since this is a degenerate disease often the conditions are worsened by this and no vitamin can cure this disease since they still don’t know exactly what causes it. Glad to see the proper eating is helping you but in the case of here most folks have a hard time eating anything because of their poor motor skills. Also Alzheimer’s patients do not sleep well at night which is why they call this “Sundowner’s Syndrome”…
Thank you so much for this wonderful, insightful information. My mother is 94 and until July of 2011 lived alone. In July she was diagnosed with Congestive Heart Failure. 4 of her 7 children were taking turns taking care of her which seemed to be working out well. In January 2012 she broke her hip and had to have partial hip replacement surgery. Surgery went well, but had a heart attack the next day. She went to Rehab/Nursing Center and there is where the problem started. She would lay in bed all day if she could and at nite would torment the staff with cries of pain,and having to use the bathroom. After a month in there she was sent back to the hospital with chest pains. No real problems were found. I have had her home with me for a week now and she still complains of stomach, hip, feet, shoulder, elbow, and head pain. The pains are much more severe at nite and legs that she could not use to hold herself up during the day are moving like she is riding a bicycle at nite. Under Dr. advice have stopped all meds and use only ones necessary to keep her calm and comfortable. She normally is a sweet person, but has threated me with physical pain. She calls out all nite for help and having to pee if I don’t give her Adivan. I know she must be dehydrated because she will only drink a little & eats very little, and because of the CHF can only have a limited amount of liquid. I thank the Lord for Hospice and their help. Adivan helps my mother sleep at nite so I can get the sleep I need to help her during the day. This has been the meanest roller coaster in my life of 56 years. I just hate to see her suffering so. I am determined to help her as long as I can. She is my mother….and I feel blessed to have had her this long.
Jeannie, is your Mom incontinent and if so then don’t worry about her threatening to wet herself and if she is not then you should get her to wear them ASAP. Be sure to give her a suppliment like ensure so she gets some fluids and vitamins also electrolite will help with dehydration. As for the pain, it could be anythng from self-inflicted at night to something from her surgery, if it continues for awhile I would have it checked out,,,
Tom, Thanks for your reply but sadly my mother passed yesterday. She died in her sleep as she wanted to. I thank the Lord above for his mercy.
Pat, I agree with you. If only we had all started eating properly from the start. There are so many chemicals added to our foods and sprayed on our produce that we are seeing more and more illnesses in later life. My parents did well into thier 90’s before dementia began showing up. They had an organic garden and ate very well until they could no longer do the work. Women especially have thryoid problems and it is being linked to xray exposure with mamograms. I ask for a thyroid collar when I have xrays to cover my throid from exposure. Our processed foods are removing the good vitamins and minerals that our bodies need to function well. Of course other factors are invilved, but I feel this is the biggie. My 2 cents. Ruth RN
Ruth, My wife had a thyroid problem but it wasn’t from any X-rays she had, it may have been hereditary but the Docs are still no sure. But I agree chemicals additives are not good for anyones health…
Tom…
I am in tears as I read the comments. I went through the dementia period with my dad aboiut 6 years ago. He became extremely aggressive after dark. He was in the hospital and it took 2-3 people to control him. He was also having mini-strokes, which certainly didn’t help the situation. I distinctly remember one night when the nurse thought Dad was having another mini-stroke and he was rushed to have a brain scan. He fought like crazy not to have the scan, and my sister and I could not understand a word he said. Oh, how we cried as we watched him. It was terrifying and heartbreaking to watch him. I still remember that feeling as though it happened yesterday. After a while, I insisted that the doctor put him on aricept and he told me that the advertisements for the medicine were to make people feel guilty, which,.of course, would make people buy it. Not true. My dad improved dramatically and survived until Jan. 22 of this year. In fact, his memory became better than mine. It was amazing!! It truly was Then a few months ago I noticed that my dad was becoming confused again, but only sometimes. Then he became a little worse, but he didn’t experience the sundowners syndrome, thank God. I miss my dad something fierce, but I had rather he die than go through sundowners again. Can anyone tell me if animals experience this syndrome? I have a 17-year-old Maltese who can still run, play, and eat, eat. The vet said that nothing is wrong with him except old age. He is like our child. Anyway, come nightfall, he paces, and paces, and paces. One night he paced for one hour. He becomes confused sometimes while trying to get to his water bowl. His eyesight isn’t great, but I can tell when he is truly confused. Don’t think I am comparing animals to humans, although we love Rascal as though he were human, but I just wonder if there is a chance that sundowners effects animals, also. Thanks for bearing with me through my long comments.
My Father-in-law moved in with us a month ago. He has been diagnosed with dementia. He is doing great, just short term memory loss. The thing that bothers me and concerns me is this: He wants to sit in his car for hours. He will roll the windows down, come in for a coke, cheese, or bathroom break, but go back out. He will come eat with us when I go get him, but not so much for his son. But he will just go back out until the evening news comes on. Has anyone dealt with this and is there anything I can do to help him? He welcomes us to come sit with him in the car. It makes me sad to see this withdrawal.
Maxine, no sure about the cat but I’m glad you were able to extend you Dad’s life some. My Dad takes xanax at night to calm down and most of the time it helps. But his doctor first thought he was having seizures which after a CT we found out this was not the case. When they have what I call their “moments” at night they can become violent and when the morning comes they usually don’t remember a thing. One problem my Dad has beyond the Alzheimers is he also has Parkinson’s which just complicates the issue even more…
Thank you so much for your reply. I am truly sorry about your Dad. I wish I had a magic wand and could wave it and help everyone who has to go through this with a parent. It hurts like crazy to see a parent change so drastically come nightfall. I just don’t understand why older people have to deal with more than one illness at a time. It just doesn’t seem fair that your Dad has to endure Parkinson’s as well as Alzheimers. Some people might say, “Well, that’s just life.” How comforting!! What a hatefull thing to say. These people obviously have not faced serious life situations. I cannot comprehend that one of the two people who created me is gone. He went through a rough time, but I think the sundowners was the worst for the family. Dad never remembered the things he said and did. I will keep you and your Dad in my prayers.
DD, maybe sit in the car and find out why he feels this way , sometimes they relive their past and maybe this is what he’s doing…
Good Luck and God Bless…
Here’s a few tips that may help some others;
If you have an issue with disrobing they make adaptive clothing with the zipper on the back that will help relieve this….
If you have an issue with falling out of bed, instead of renting a costly hospital bed you can buy side rails that adapt to most beds that will help with this…
Music (soft and soothing) seems to work the best at night and helps to calm down the system…
Be sure to keep an eye on infections (mainly UTI) since this is common with Alzheimer patients…
Lastly, work with your doctor/neurogolist to get the correct meds for them and also the best dosage too…
Wow-a great forum, and it is obvious this is an important topic that many are experiencing and puzzling over. I work in the eldercare field and get a lot of questions about Alzheimer’s/dementia and especially lately, Sundowner’s Syndrome. One of the things I find (and it seems there are a lot of these questions here) is that there is A LOT of confusion about terminology. This is, unfortunately, even true in the medical/eldercare professional world sometimes. We created a concise handout on dementia/memory loss related terminology to really try to help with this and I’d invite anyone to download and/or share it: http://info.agingwisely.com/memory-loss-dementia-old-age-what-is-it. Just a quickie here–Alzheimers and other dementias (there are many) are not “normal” aging (some learning/memory changes are, but not so that it affects daily living–see our “what’s normal”), but they become more common with advanced age. Sundowners describes certain behavior (as well described here) that is found in some people with different forms of dementia.
If you know someone having sundowner’s symptoms: 1. make sure you understand underlying causes (i.e. have a good diagnostic workup) 2. get experienced medical professionals/specialists–it can be a mess if you are dealing with a Dr. who is not a specialist as some of the supposed “calming” medications can be very problematic with dementia/in the elderly 3. read up on some of the good tips other caregivers and professionals can share–I think light therapy’s been mentioned here but there are also simple environmental things that can help (knowing triggers, calming things, providing activities, music etc.). I’ve been sharing a lot of these lately because there seem to be so many questions out there.
It is too much to get in to in depth here…but I saw a # of comments about hospitalization and this is an important topic. Hospital delirium is common, especially among the elderly. In addition, a hospital stay or surgery can have a # of negative effects on the elderly or someone with any form of dementia. Obviously, it can’t always be avoided…but it should be part of the decision making/care planning process when possible (i.e. is this really something that needs to be handled via hospitalization, what are the pros and cons of surgery and ongoing quality of life) and precautions should be maximized when the hospitalization has to happen (good geriatric care precautions, fall prevention, consideration of round-the-clock caregivers etc.).
Shannon, great info….Thank you for caring for our elderly. 4 yrs ago, I took my father to Hermann Hospital in downtown Houston, I believe, the best Medical Center in the World, and walk him out of there because of the nursing team there. I have found him the best group of Dr.’s on the North side of town. It is very hard to know what sets them off. You know, a smile could set my dad off. I know, not everyone has the luxury of keeping their parent around the clock, but, I know that our “safe zone” is usually not more than 15min away from us.. Hospitalization. wow, definitely weigh the pro’s and con’s. PT and Nurses come to the house, but, as for CNA’s well, long story short. My dad just didn’t want anyone that he didn’t know around him. So, that ended that short trial. Everyone is different. Sundowners Syndrome starts for him around 4pm…It is crazy. When you care for these people, you, yourself figure out all the (little things to us), such as: rugs, coffee tables, extension cords, are definitely huge problems for them. God bless you, Shannon.
Bettye.
I have FINALLY found help after a LOT of investigation. My Mom is now only on Vitamin D 2000 Ius daily in the AM. And Melatonin at night. For weeks she was keeping me awake ALL night, on meds the Dr. gave her.They made her WORSE! She would sleep ALL day and be up ALL night. Now I leave a Melatonin in the bathroom for her at night if she wakes up. ITS FINALLY helped. I also lock my bedroom door at night so shes not waking me all night. With a note on my door to take her med and let me sleep til 7 AM at the very least. She will now only take a small nap in the daytime. Then shes sleeping well at night. I hope this helps someone else. I was ready to pull my hair out before I figured this out. I also, make sure the house has a lot of light in the daytime. And she wont leave the house. If she gets up before me, she just sits in her chair til I get up. I leave her reading material, and crossword puzzles but she never reads them. She watches the cat out on the porch, and the humming birds I feed. I also got her a dog. A prue bred Rat terrior she Loves. That is going to have Chihuahua puppies. She is looking forward to picking a tiny one, she can hold all the time. Unfortunately the Rat terrior is too big, to sit on her lap. She has bonded to me. But I bred our dog to get a tiny one. Then I will fix her. (I already have more homes than the puppies she will have.) I have also gotten my Mom 2 Beta fish she LOVES watching. I hope this helps someone else. If you cannot get a dog,.maybe a kitten. Or beautiful Beta fish.
I would urge you to have an appt with a psychologist to deal with these acute anxieties about the dark
i dont know how he is at dark time but will ask nursing staff tmr ngt …thank you
hi my dad has just turned 64 last week im worried sick abt him,he has been in and out of hospital for last 4yrs,every time he goes in his confusion is getting worse he thinks he has been at work alday or at the pub the confusion has been realy bad he isn,t recognising me a cpl of times now and asking me where i am etc its so hard,they tell me he been ok today but i go at ngt to visit and he away in another world,but just recently iv been getting a nurse in at ngt to see for there selfs,so iv still not got a diagnosis as yet but i dont know how to get the help i and my dad both need even just answers pls help???? thank you for sharing your stories with me
I don’t know what i am supposed to do… my husband is only 64 but has dementia from brain cancer and radiation treatments. I am 13 years younger and I MUST work to keep us afloat. I have a cousin who checks on him most days, but I have anxiety every day because I never know what I am going to find when I get home. The confusion and aggression definitely are worse in the evening when I get home after a long day. He is pretty good in the morning, but bat crazy by dinner time. I work at a very strict employer and can only call during breaks and lunch and if he doesn’t answer the phone, I worry myself sick until I get home. I have no time off because it is a recent new job and as I said strict, I don’t know if he is safe at home, but I can’t afford home care – any ideas on what I can/should do???
Barbara check to see if your county has any medical programs that might help you in caring for your husband. Also maybe if possible you could adjust your hours but if neither works maybe something could be prescribed to help calm him down. Let us know how you make out…
[…] is called Sundowning Syndrome. It’s a stage some people with dementia go through at night. It has to do with the circadian cycle […]
@ Barb-I am sorry to hear about your tough situation–it certainly sounds like you are trying to do your best juggling a lot, but there’s a lot on your plate. I had 2 thoughts–have you checked respite care options in your area? Here’s a broad overview about respite care: http://info.agingwisely.com/blog/bid/49944/Caregivers-Options-for-Respite-Taking-a-Break. Some counties have adult day care which is at least partially funded (i.e. could get paid for or discounted). You’d need to see if it is appropriate for your husband. Perhaps even if he was able to visit a program part of the day or while you are at work, 1. you’d feel some peace of mind re safety, 2. it may keep him busy/more tired when you get home, could possibly help with evening symptoms. Second, would any of his physician’s offices/cancer providers be able to offer any case management or recommendations? Some times they can help connect you with programs to help, though many times the elder services agencies or Alzheimer’s Assoc. are more geared to these types of needs. They may also be able to help with the agitation, what might help him feel more calm.
My mother-in-law is 87, until four years ago she had never lived alone. She lives in a secure apartment building. She suddenly believes a man is in her apartment. She has called the police, pressed her medical alert chain, called us absolutely petrified all in the 1:00 – 3:00 time period. My husband and the police have checked under beds and in closets numerous times. She has never been diagnosed with sundowners syndrome, dementia, or Alzheimer’s disease. I have suggested that family members take turns spending nights with her but no one is willing. They try reasoning with her that no one is in her apartment. I believe she belongs in assisted living at the very least. She has been staying up until 4:00 – 6:00 a.m. then sleeping until 1:00 – 3:00 p.m. for several years. Any suggestions would be helpful.
What a great forum! It’s nice to see folks helping each other through such a difficult time. My folks are 92 and they both have severe dementia. They still live at home, and for the last 3 years have had around-the-clock care from my three brothers and myself. ( All three are retired; we do 24/hr shifts and as the only girl, yes, I do know just how blessed I am. I think of it as kudos to my folks for raising such good men. Salute to all of you.) It is such a sad, sad way to end such a long full life that they can’t remember sharing.
To the point; we had never heard of Sundowner’s until Mom was hospitalized in April; it sure explains a lot about how our days have changed in the last year or so, and they have been seeing a geriatric doctor who never mentioned it. (A nurse told me~ God love ’em) Mom has it bad, and any number of things seem able to trigger it, if that’s indeed how it works; a lot of visitors at the same time, when she has trouble following; a trip out of the house too late in the day; not enough sleep; a bad day with her hip; a tiff with Dad (which can happen a lot when neither can remember what they are discussing) or even a dream during a nap. We try to distract her; a change of venue, a cup of tea, the Lawrence Welk Show…but mostly just ride it out patiently until she tires and is ready for bed. In the morning she is generally back to her norm, with no recollection of the previous night’s tirade.
I haven’t seen many references to the drugs that are being used.. I’m wondering if any patients are taking Seroquel (sp?)? Mom now gets Xanax in the afternoon which seems to help quite a bit with the anxiety, and Seroquel in the evenings, which I think seems to make her symptoms worse. Would they be even worse without it? *shudder* I look forward to trying the SAD lighting and mood music, and hope it gives her some relief. Blessings to all of you who are caring for your elderly with love. <3
I was hoping to see more comments about dementia and taking seroquel… My Mom is 100 and has been living in our home for the last 2 months…. Before she got a UTI and sever dehydration, she was living by herself in a little apartment, not even considered assisted living… But after her stay in the hospital and skilled living for her UTI she has been very anxious and cannot sleep… She has been on a low dose of ativan, but it doesn’t seem to help that much!!! The last few nights it has a been very hard as she yells help, help for my husband and me and really didn’t sleep from 9:30 until 4:00 am. I didn’t want to give her seroquel, but we are both worn out, and that is what the doctors said would really help her!!! There were not alot of good reviews on it though…. hoping someone can help me with this!
Debbie= What you are experiencing is not uncommon. I would first make sure the UTI is gone by retesting her urine. Second I would see if you can work with an agency to have someone sit with her for a few nights so you both can get some rest. Lastly I would speak to her Doctor about Melatonin for sleep. It has been noted here a lot and folks have had success withit. With a restful night under your belt you’ll be able to make better decisions.
I recently learned my Mother not only has Alzheimers. She now has Parkinsons Lewy Bodies Demensia. After 2 trips to the hospital, and a week in a nursing home. The ONLY thing that helps her sleep, is a 3mlg Melatonin. PLEASE check ALL meds and have your Loved ones tested for this as its a common problem, But is NOT diagnosed enough. It comes on fast, unlike regular Parkinsons.It takes a Nerologist to diagnose this. And the symtoms are not like regular Parkinsons so PLEASE look it up. There are many drugs that make this condition worse. Including Halidol and Seroquil. So for your own and your Loved ones sake reaserch this please. My Mother is now sleeping like a baby. With only Melatonin.
For those who have parents who are experiencing sundwoners and dementia can anyone comment whether or not they are on plavix. We had to take my dad off of plavix for 3 days for some dental work and he was very mentally alert. We may try 2 days again with doc’s permission just to see if that changes his mental state. I’m interested to hear if there are ties with this drug and sundowning with anyone else.
Thanks so much.
My father was on cumidin and once he got off of it, (been off for about 3 months now) he seems very mentally alert and less dizzy. Its smiliar, not the same medication but is a blood thinner. I noticed it immediately. He almost seems back to normal. I am sure he is better because of the assisted living community but this was immediate. He says he still feels confused but I do think the blood thinner was creating a lot of the symptoms.
Hi-my 88 yro mom is in the hospital right now. Up until about a week ago she was a very active person and young for her age she traveled all over italy when she was 87 and out did some of the young folks. Fast Forward to last saturday admitted to the hospital and dreaded diagnosis Terminal Lung Cancer!! Then came the personality change where she was foggy and out of it and didn’t know where she was. It was like I read not happening all day but parts of it. We were never told about the Sundowners we kept asking them to find out why she was so loopy and they finally explained it. She comes home with hospice in a few days and doctor thinks it will all pass once she gets home. I hope so. Does anyone have a similar experience and can you please share the result? Thanks and God Bless.
My prayers go out to each and every one of you who have a loved one with dementia and sundowners. We have been taking care of my mom for a couple of years now. She is 90 and had tumor in her colon in May. The surgeon said it is a common side effect of plavix. I mention that because of the aforementioned comments about plavix. Surgery was to keep her from bleeding to death, not to prolong her life. However, she has physically recovered from this surgery and is starting to improve a little mentally from anesthesiology. She is sometimes more lucid than at other times. She sees people that are not there. She uses random words to converse with us and we just have to guess what she means. She sometimes gets angry and anxious. She is content most of the time while on medication for depression. Nuedehta is a new mood altering drug and it seems to be working well. About every third or fourth night she stays awake all night and the next day as well. Then she sleeps the next few nights because she is exhausted. My husband cannot work because he has to stay with her 24/7. I am 1 1/2 years from retirement so we decided it would be better for him to quit his job. Today we talked to a social worker to see if mom qualifies for a paid caregiver while staying in her own home of 43 years. Of course, we have to ‘take her home’ every day but it makes her get up and walk to the car. The social worker suggested a book entitled The 36-Hour Day that deals with all aspects of dementia and how caregivers can handle a plethora of situations. I know how you all feel because we have been living it for a couple of years. We were traumatized for the first year and a half. Now we somehow make it through the day, day after day. I heard someone call us a sandwich generation. We have 11-year-old twin boys and 90 year old mom. We are coping and making our situation work. It is heartbreaking and rewarding. Our boys are learning from the experience and we have bonded as a family. I hope you all find a support group and don’t try to live this life alone. I pray for everyone going through this experience. God bless.
My 84 year old mother was doing well, until she got a UTI and was admitted to the hospital. The first evening she began to hallucinate horribly. By the time she left the hospital we wound up bringing her home wearing diapers, in a wheelchair, and talking nonsense, especially at night. My mother has never been the same as she was the day before she went to the hospital. Dr.s cannot give us any answers, much less a cure for her illness. All they can say is to keep her safe and be patient. This has affected everyone in my family, mostly my older sister as she is now her caregiver (day and night). It has been extremely sad to see how quickly this “illness” can consume one’s personality. My mom was funny, friendly, and called me at work at least 3 times per week, just to say hi. Since that day when she went to the hospital…I have not received another phone call from her. Bless everyone who suffers from this, bless my mom. I love you and miss you so much.
LAST NIGHT FOR THE SECOND TIME MY 74 YEAR OLD HUSBAND BECAME IRRATIONAL AND VIOLENT. THE FIRST TIME WAS SEVERAL MONTHS AGO WHEN HE DIDN’T LIKE HOW I RESPONDED TO A COMMENT HE MADE AND HE THREW A GLASS OF WATER ON ME. THE NEXT DAY HE ACTED LIKE IT HAD NEVER HAPPENED. I HAVE NOTICED THAT HE GETS ANGRY AND UPSET AFTER DARK ON A REGULAR BASIS. LAST NIGHT HE THREW A GLASS PLATE AT ME WHICH SCATTERED. I WAS MORE THAN A LITTLE CONFUSED AT THE BEHAVIOR. HE CAME BACK INTO THE ROOM AND TOLD ME TO GET A BROOM AND CLEAN UP THE MESS. I TOLD HIM IT WAS HIS MESS AND THAT HE SHOULD CLEAN IT UP. THIS CAUSED AN ANGRY OUTBURST ABOUT ME CLEANING IT UP BECAUSE IT WAS MY FAULT. I CLEANED UP THE MESS AND VACCUUMED UP THE ROOM (THERE WERE A LOT OF GLASS SHARDES EVERYWHERE. HE WENT TO BED WITHOUT TALKING TO ME ABOUT THE INCIDENT AND THIS MORNING AND AFTERNOON IT HAS NOT BEEN MENTIONED. HE REFUSED TO TELL HIS MENTAL HEALTH DOCTOR ABOUT HIS DEPRESSION AND I’M NOT ALLOWED TO SPEAK AT THESE APPOINTMENTS IF I GO WITH HIM. WHEN I ASKED ABOUT HIS MENTAL HEALTH DR. AND IF HE HAD TOLD HIM ANYTHING – HE INFORMED ME THAT HIS PCP WAS THE ONE TO HANDLE IT. HE HAS RANDOM NERVE PAIN, HE IS A DIABETIC AND HE HAS FATIGUE ALL THE TIME. IT IS VERY SCARY DEALING WITH HIM AS HE HAS GOT PHYICALLY VIOLENT AT TIMES. A WEEK OR SO AGO, HE WOKE ME AT 4:00 AM TO TELL ME HE WANTED A DIVORCE AND I WORRIED ABOUT IT ALL DAY. WHEN I ASKED HIM ABOUT IT LATER HE TOLD ME HE WAS STILL THINKING ABOUT IT. HE WANTS HIS LIFE BACK AND HE CLAIMS I HAVE TAKEN IT AWAY FROM HIM. HE IS ALSO A VETERAN AND HAS A HEARING LOSS AND HIS VISION GOES IN AND OUT. WHAT DO YOU DO TO HELP?
My dad is 79 and was admitted to the hospital in July for
a blockage in his leg. After the surgery he had a stroke on both sides of
his brain. He spent 2 months in rehab with terrible night screens keeping
everyone there awake all night. Toward the end of his stay there’s they made
us stay until he fell asleep and one of us would have to go back in.
We finally decided to take him home and us 5 kids are trying to care for him
24 hours a day. He is becoming more and more violent. And the yelling is
terrible. We are trying so hard and its a week tomorrow. And we are all
exhausted. My mom is also in the picture she is very jealous and refuses
to do anything which she use to make dinner. We can’t do anything
right in her eyes. Any suggestions? ???
Sandy – Have you been assessed by a case worker for possible services to help you and your family? This doesn’t seem to be a manageable situation for you or your dad. You need help to get the situation under better control. Have you called your Office for the Aging in your area?? They will send out a social worker and maybe you can get help with his meds or some physical therapy. They’ll take blood from him and maybe help out with other things. I hope you can get some relief soon for you and your dad.
@Joyce and other recent caregivers with comments and questions: I wanted to share some info. that sounds relevant to your situation-not sure if you saw my guest post http://sundowners.wpengine.com/the-negative-effects-of-hospitalization/ as it sounds like several of you have experienced some major changes and issues after an injury or hospitalization. I know it is so frustrating trying to figure out what is going on, get a good diagnosis, help, etc. Having talked to so many caregivers over the years, we hear the trials and tribulations time and time again. These issues are taxing enough on both patient and family, without the added stress of feeling like you’re navigating a maze of information and running in to brick walls. The RIGHT professional help can make all the difference. I say this after consistently seeing that difference over my 15 years in geriatrics. I have primarily been the person families talked to when searching for help/calling our office so I hear all the background and the tears behind it. Then, I get to hear the stories after the families work with one of our geriatric care managers for a while (and often get the letters and emails of thanks). This is what makes me so passionate about it.
I am glad to help point people in the right direction to someone who might be able to help in your area. Two of the things that most help are 1. hearing others’ experiences and getting support from other caregivers such as you can find here and in support groups (the right ones) and 2. getting personalized advice from an expert–access to the right medical care, services, someone who knows “the maze” intimately and can get you through it to the best answers for your family.
is sadd and pmdd and ptsd correlated because wonderin racing thoughts will not lleave me at nights.i am starting to get concerned. i thought this was normal. but it has been half my life. im tired
My grandmother who is 96 years old has been suffering from what we think is sundowners. She is fine during the day and afternoon time. She gets confused and scared around the time she goes to bed. She doesn’t recognize anyone. She thinks she is in a jungle and doesn’t recognize her home or family. The only way we can get her to calm down is to keep reassurring her that this is her home and we are her family.
Is there any other way we can help her?
My mother-in-law began to suffer sundowner syndrome after she went to a hospice home. She first came to stay with us & I noticed she had lost a lot of weight & wasn’t drinking enough water. She became confused & weak. I took her to the hospital & they put her on an I.V. Because they said she was dehydrated. Within 15 minutes, her confusion went away. The hospital decided keep her there to run some tests. They also kept her on a saline drip & fed her often to get her weight up. They found lung cancer & wanted her to go a convalescent hospital for physical therapy to get her strength up. During her stay there, she didn’t receive any saline drip & contracted C-diff (an intestinal bacterial infection) & became severely dehydrated again. After she recovered from C-diff, she chose to go into hospice care. She was 81 & didn’t want to treat the cancer. At the hospice home, I noticed again she wasn’t drinking enough water. That’s when she began to suffer from sundowner syndrome. In the end, she was hallucinating, agitated, talking nonsense & didn’t know her own family.
I think someone should research the effects of severe dehydration as the cause of sundowner syndrome. From my experience with her, I saw an amazing recovery in her eating habits & mental acuity within moments of receiving hydration. Without it, she lost her mind. It was very hard for my husband to watch his mother go mad.
I retired in 2002. Mary & I lived in Wa. State. We decided to move to Arizona. We would do so 0nly if mom was willing to allow us to move with us. Her mom lives in a nice retirement home. We recently found we needed to move her to the assisted living section since she was diognost as having Sundowners/Dimentia symptoms.
Since moving her only a week ago, she has become highly irritated. Her mom was living in a two bedroom as she felt she need an office which of course she did not. We finally received her agreement to move into a studio unit. The studio could not accomodate all of her furniture which caused mom’ further unhappiness with us. We have the items of furnature at our house with intent of eventually letting her know. She has accused my wife of stealing her money and wants to know what we have done to her. We received advise from the staff to allow them to work with her and allow her to make contact with us since she is so mad at my wife.
A few days ago she was found wandering down the street with her walker. She told the retirement home van driver who brought her back that her car had stalled. She does not have a car.
A few weeks ago she spent several days in a wonderful hospice. She received wonderful care. Hospice continues to keep in touch with her and even sends a nurse over to her once a week.
We now recognize that mom’ illness started several years ago with our not fully recognizing the onset of her illness. Many of the simptoms inidcated by others on this website are much the same.
My wife and I are attending a support group which we highly recommend.
If we don’t hear from mom in a few days we intend to ask the head nurse to let mom know we would like to visit to see what response she may give.
Let those of us who have a loved one share with others facing this issue and do all that we can to understand his tragic desease.
My mom is 68 years old and has to retired, she is feeling alot of anxiety. She is telling me she is lonely but she will not get out and do anything for herself. It is like she has stopped living. The doctor has prescribed Lorazepam which I am not really sure is the answer, but I do not know what to do because I have a son that is special needs, and I have to work. The doctor did not say she could not do for herself, but she wants to have someone with her at all times. Please can someone help me with some alternatives for her.
Read my 3/18 post (awaiting moderation). There may be an answer for you and others there.
My mom is 90 years old and has severe dementia. She was on Aracept for years, but it stopped working, so we discontinued it. She has lived in an Assisted Living Center for about 6 years. She fell last Tuesday and fractured two vertebrae in her spine, and had surgery a week later which was very successful for alleviating the extreme pain she was in. However, she has Sundowner syndrome every time she is in the hospital. She tore out her Foley catheter several times, her IV line too many times to count, her telemetry hookups, her id and allergy bracelets and tried to take off her hospital gown so she could go “home”. The nurses for the most part were understanding, but there were a couple that just couldn’t handle the extreme change in her personality. I was with her everyday, and into the evening, but the later it got, and the longer she was hospitalized and medicated, the worse she got. They finally put her on Haldol at night, to “clear her mind”, which made her practically comatose the following day. She is still so confused. We transferred her to a rehab facility today, and I am sure she is mad as a hatter tonight. Hopefully, her Assisted Living Center will take her back when she is released from rehab. If not, the only alternative will be a nursing home. Like many have said, having a parent or any other loved one with dementia is really painfully hard, particularly on the primary caregiver. My mom was a very proud woman, and still wears her lipstick and cologne, beautiful outfits with lots of jewelry, and she would be mortified if she knew she was incontinent and totally out of touch. She still recognizes a few people, but for the most part, lives in the past. She always asks how her parents are doing, and if I have talked to my dad lately. She has outlived everyone of her generation, friends and family. It is so sad, no way to live out the golden years, for her or me!
Dear loved ones,
Thank you all for all you do for each other and your loved ones suffering from this terrible syndrome. My 82 year old Dad is going through this right now. It made me take a look at myself and I see many of the same things happening to me now. I am 57 but had two heart attacks & a stroke caused by spontaneous dissections of the LAD (heart) and a corotid artery in my neck. The dissection of the artery in my neck severed many neuro receptors and they healed back in the wrong places causing many changes in my life. I am angry and anxious constantly but it gets worse at night. I am not afraid of the dark, but carry a pistol always to protect myself if someone tries to get in my house. I am sad for my wife who is struggling to understand why I am so angry. I wish I could explain it. I don’t know anymore why I am the way I am, but yet I am conscious of it and that makes me more angry. God Bless all of you.
I think we may have found the solution to my 91-year old father’s 5-year battle with dementia and Sundowners. Just a few days before this video was taken, he was nearly completely out of it. We couldn’t understand him and he couldn’t understand us. All he did was lay on the sofa and sleep. I’ve been trying everything over the past 3 years, with moderate success, to find a cure. But it wasn’t until we started adding a single drop of Atomidine (iodine) to his morning coffee that good things really started to happen. I bought it on-line for about $10 and figure the 2-ounce bottle should last about 5 years. This video was taken in the evening, when he normally struggles with Sundowners. He is meeting his great grand-daughter for the very first time. Notice how cognitive and engaged he is. We can understand him now and he is able to understand us. Since this was taken on 2/26/13, we switched his coral calcium to a type that includes selenium, iodine and magnesium. All my research leads me to the conclusion that mercury poisoning is the cause of his dementia. Selenium, iodine and magnesium are supposed to help protect the brain from mercury. It can’t be just a coincidence that this seems to be working tremendously for my dad. We’re now starting him on garlic, onions and cillantro to remove the mercury from his brain. He has come even farther along since this video was taken:
http://www.youtube.com/watch?v=iZUFMVV32Rk
Here’s also a quick video on mercury poisoning to help explain what is happening: http://www.youtube.com/watch?v=pPVxiDpsNDg
Don’t give up. Our loved ones are counting on us to help them. There is plenty of research to back up these theories and it doesn’t cost much at all to try them out. Google is great resource and you’ll probably find a few more great links alongside the last video. My E-mail is jskrepak@mail.com if you want to make contact. Use “DEMENTIA” in the subject line so I’m sure to notice it. I’ll be happy to compare notes with you in the hope that we can lick this disease.
My father has been undergoing chemotherapy for cancer of his small intestine, it has spread to several other places and is stage 4. He doesn’t have any cancer in his brain according to MRI. He started becoming confused about 2 months ago, only sometimes at first and then all the time. We tried removing some of his medications, and different strategies like large clocks, and calendars, keeping his around familiar people and surroundings. He remains confused and now is worse and seems to have some kind of sundowner’s as well. His mother had alzheimers, my dad is 72 and until 2 months ago had been successfully running his 3 businesses. This is so sudden and a huge shock to everyone because he would be so embarrassed to be this way. The dr. said a severe illness like this can bring on alzheimer’s early if you are already prone to it. Has anyone else seen this happen so suddenly to their family member? They are probably going to stop chemo because it has been so hard on him and we just found out from a pet scan that the cancer has spread more despite the treatment.
My father is a type-2 diabetic and had openheart surgery about 10 years ago. He is on about a dozen different medications for his heart, cholesterol, diabetes and other issues. Slowly over the last year or so, he has been waking up in the middle of the night and prowling around the house with a flashlight. When my mother asks him what he’s doing, he has no answer. My father has prostate problems and has long had to go to the bathroom several times each night. Now, he’s walking into a corner of his bedroom and urinating. My mother woke one night to find him preparing to urinate by the bed. She asked him if he had to go to the bathroom and he said yes. She directed him to the bathroom attached to their bedroom. Last night she told me that she found him searching around the house with his flashlight and, when asked, he explained that he was “looking for that little boy” – obviously there is no little boy in the house.
He seems much better during the day even though he forgets where he puts his keys and to take medicines and Mom has had to take over making sure he takes his meds. At night, he seems much worse and commits bizarre acts that he does not do during the day. Is this “sundowners”?
I hope someone can help me. I have been the caregiver for my now 41-year old daughter, who was born with a severe handicap called spina bifida. She also has mental retardation from the birth defect. So she has been a “special child” all of her life She has had approximately 35 surgeries during her lifetime, 29 of which were brain surgeries to place a shunt in her brain to pump out excess fluid. She has been wheelchair-bound her whole life, and I am not only her mother, but also her legal guardian. Over the years, we have had help with CNAs, LPNs and now RNS, who help with her care 10 hours a day. She has a suprapubic tube and a colostomy. She will always be my “child”, but now things have changed.
I have devoted my life to tending to her needs. Earlier on, I was a successful business person. Unfortunately, I am not working now and I am on permanent disability as an end result of a bout with cancer, so I am home all the time with her and her nurses now.
Although she has always been “childlike”, she has had a 35-year old vocabulary, due to being around adults all her life. She has so over-achieved what the doctors predicted her life would be on very many levels. She has been the joy of my life and I am blessed to have her. But now things have changed.
She was recently diagnosed with dementia. She exhibits trouble forming sentences, has lost her short term memory and has developed a severe case of OCD. I believe she has Sundowners Syndrome, as well, as her confusion increases dramatically after she eats dinner at 5 pm, and she immediately wants to go to bed. She has become argumentative at times, and plays mind tricks on me and her nurses by telling us she is “sick”, when she really is upset about something. She is often angry, and constantly confused. I am losing my “little girl” in a way I never could have predicted. So many other things could have killed her so many other times, that the thought of losing her to dementia was the furthest from my mind. I am in shock.
After speaking with many friends who have lost loved ones to this horrible disease, I am horrified to think that she will drag on in this state and worsen over time. No one can understand the horrible grief I am feeling over this diagnosis. One of my longtime friends told me that when someone has dementia, you lose them twice…the first time when they are diagnosed, and then again when they leave this world. I am absolutely positive that I am mourning the loss of my daughter right now, and that I will again when she dies. I need some help dealing with this loss. It is crushing me. She is my best friend, and my only child. I have lived for her and by her side for 41 years as her advocate, and believe me when I tell you it’s been beyond difficult. But this…this has knocked my legs out from under me.
Her father left us the day she was born because he couldn’t handle her birth defect. We never saw him again. My 2nd husband died in my arms of a heart attack, only 8 months after we were married. My current husband is wonderful, but we’ve only been married 8 years, and he hasn’t experienced the 41 years of emotional torture I’ve lived with during my daughter’s time on earth. He tells me, “I love you and I’m here for you”. I know he loves me, but he cannot understand what this diagnosis means to me. I hope that someone out there can lead me in the right direction. I think I first need grief counseling (and I don’t particularly want to go to “group” counseling…I am extremely empathic and will pick up others’ grief). And then I believe I will need some sort of support to get through this dementia stage of her life.
I am now 62 years old. I am tired and I am angry. I know this is normal. Does anyone have any suggestions for me? I know they say God closes a door, but then opens a window. Well, I’m ready to jump out of the window! Thanks for listening and love and prayers to you all.
My mother in law has been amitted into the hospital twice in two weeks. Her sodium seems to dipping low but they do not know what is causing it. It only has happened at night and she cant remeber anything and becomes violent. Could this be sundown syndrome?
My grandmother who recently had to have some surgery due to a fall, has been having some what the folks at the nursing home are calling Sundowners. She is almost 88 and had some forgetfulness before the surgery. This isnt every day, some days seem to have a bit more than others, but she tells me, i was confused.. i am confused. I am wondering if its related to the pain meds or anestesia. She was totally independent before the fall all but driving which she gave up several years ago on her own. When she has the “episode” she will then talk about whatever has her confused, and gets the correct answers and seems to understand at that point. At the nursing facility they use sundowners like its an everyday term, and what I have always read seemed to mean that it was Alzheimers. That being said I am doing my own reasearch (( hence why I am here)) to get clear answers for myself.
Thank you for any feedback in advance.
My Mom has just started with the sun downing in the last two weeks after a month and 1/2 in the hospital and rehab for a spinal cord cancer removal operation Mom is 81. It is 8:52 am and Mom has been sun downing since 5pm last night. Mum has lung CA with mets to her brain and spine. 2 operations 1 radiation and 1 run of chemo and 1 more radiation to go. Diapers and Foley bags. These 24 hour plus episodes are killing me and my 86 year old father is staying up night w/ her. My brother is in denial my sister will be here in a few days and she and I live 3000 mile away in California. My husband in in remission and here I am . My Mom hates me and swears at me and screams and yells. I know it’s the condition, but it is killing me. We have an appointment w/ a specialist on 8/1, maybe they can help. Xanax made things worse and Benadryl didn’t work. It seems that the men in the family think this will pass and I know it will only get worse. It has only been 11 days since my Mom has been out of the hospital and it feels like years. from the posts I have read, nothing but an institution is the answer. My Dad is not there yet. I don’t know what to do…. WE NEED HELP!!!
Hi,
My Mom had a terrible fall about 7 months ago. She has A brain injury and some dementia Lately it seems that around 4:30 every night she starts to get more confused and anxious. She is not able to sit still, and gets very very easily upset by the littlest things.. Is this possibly a form of sun downers?
My dad is 84 years old and was diagnosed with dementia a few years ago. My mom has recently died ( they were married for 64 years) and since she has died he has what I am sure is Sundowners. He does really well during the day but at night he gets all confused. He gets so upset when he can’t remember things. Is there any medication that can be prescribed for him? I just hate that he gets so upset when he can’t remember and I feel bad when I have to remind him. Any suggestions about to do when you have to continually remind him about a certain incident? Thanks, Bert
I just found this site and am in need of a facility (Tampa or Orlando) for my mother who is 87 and suffers from dementia and due to two falls – is no longer mobile. I had to move her out of a Independent Living facility because she cannot “transfer”. She does qualify for Assisted Livng for the same reason leaving only a nursing facility – which she refuses to go to. This has left me renting a house and providing 24/7 CNA care via a agency. My mother pretty much has run most caregivers off and we now are left with a revolving door of aides that do not know her “routine”. This causes another layer of stress for all concerned. My mother yells and screams and has been known to hit – all of which are 180 degrees from how she was when she was well. Have just hired a psych nurse to help…..now we know why she goes from “difficult” to “intolerable”: everyday at 1 or so and why you cannot reason with her when in a argument. 🙂
my husband is 67 yr old and he has vascular dementia and he is going thru Sundowners….but he isn’t sleeping at night or day…and he gets up and down all day and night…so what can I do to help him get thru this….he can’t be still ,,he is up and down all day and night.
Does anyone know of a good assisted living home in/near Fort Lauderdale, FL? My Dad is going to be going into a V.A. and she cannot go. They are both 92 have dementia/Alzheimers, Sundowners. We have no money, so we are in the process of appying for medicaid. Thank you.
[…] there are countless theories, researchers understand very little about the causes of Sundowner’s Syndrome, a condition often associated with Alzheimer’s disease and dementia. As with any other […]
Hello- I’m just wondering if what my father has been doing might be sundowners…? It’s been 2 months since his hospital stay in which a Dr wanted to put in a heart pacer, but did not do that. He was sent home where he lives alone. I was there and took care of him until he was able to get around & care for himself. But now for the last 3 weeks he’s been talking about seeing baby kittens at night. They get in the bed with him when he goes at 9:30pm. He has called Critter Control and they came out twice and never found any sign of a cat or kittens. He hasn’t seen them in a few nights now, but he says its real….So I’m wondering if hes seeing things and does this happen with sundowners?
My mother has never been an easy person to live with but the last several years has been increasingly difficult. She has a long list of health conditions including COPD emphysema,diabetes,and CHF to name a few. She had a minor stroke a few years ago and another possible one recently. We placed her in assisted living for about 6 weeks until we found out they were not taking care of her. She has had 3 episodes of high C02 and nearly died in 7week. Since we brought her home again and straightened out her meds we are seeing an increasing amount of aggressive behavior from her. Most of it in the evenings. It is like a pressure cooker that just boils over. There is no reasoning with her anymore at all. Needless to say she has always been domineering but this has become vengeful. Cursing, shoving, refusing to eat, and generally mean tempered. I have had her tested for Alzheimer’s and they say all she has is depression. I can’t place her in a nursing home because she refuses and without a large amount of money to hire an attorney we can’t get power of attorney because she knows that is where she will go. Suggestions?
My Step-Father just turned 70 y/o last month. About 2 1/2 yrs ago he went through a period of confusion (about 3-4 weeks). Since then he has not been himself. He used to bath 2-3 times per day and now if we can get him to bath once a week we consider it a victory. He would also get his hair cut and a professional shave every week, last week we got him to go for a shave and hair cut for the first time in about a month. He walks with his arms down beside him with not motion and he shuffles his feet. He used to eat three meals a day and snack in between, now if we can get him to eat one meal per day we consider it a job well done. He has fallen several times in the last six months. He lays down all day, but gets up in the evening and walks all night until about day break.
I think that he has Sundowners. My mom seems to be in denial and thinks that he is just trying to get attention. We are currently trying to find him a doctor because his doctor started working a different job in the medical field. Is there anyone who recognizes anything that’s going on with my S-Father that points to my belief of him having Sundowners? Help!
My mom has suffered so long. Who can really tell how long she has had dementia. Had a brain injury since she was 16. She was a CNA and worked until she was 70 even battling breast cancer and many other diseases that should have killed her the doctors say. My mother is a strong woman but i hate watching this suffereing everyday. Most days she doesn’t know who i am. Well she thinks im her caregiver not her daughter. She thinks her raggedy ann and andy dolls are her babies. I’m glad she can have some comfort with something though. She has had sundowners for at least a couple years now. Sunday always seems to be the worst though Im not sure why. Somedays she has sundowners all day. We keep her at home now with homecare and some days are bette rthan others. When she was going to adult day care she seemed more agitated. She hasn’t felt good today but constantly is pacing back and forth with her walker and has started that a lot lately. NOt sleeping well again at night which means im not either. Hasn’t ate well today. Hoping for a better day tomorrow.
My mother keeps bringing things up that have never happened. She has had episodes where she says she has seen someone when I know she hasn’t and she sometimes even brings up how she has seen her mother recently. My grandmother has been dead for more than 5 years. She also has episodes where she talks to me about her daughter Danae (which is me) like shes doesn’t know who she is talking to. She does all of this randomly on and off all the time now for a year. It happens in the morning, afternoon and after sundown. It will come and go and it saddens me. I am the only person who lives with her and I’m only 17. And still in high school. I have talked to her doctor about it and he hasn’t done anything about it. I don’t know if it is Alzheimers or something else and it’s scary to even think about. Does this sound like Dementia or anything? Please reply with even the smallest information.
If a patient has Sundowners Syndrome, does sleeping during the day affect whether they will sleep at night or how long they will sleep?
Thanks,
My father is 91 and is living in at an assisted living facility and he hates it. He was VERY active his whole life and still goes to work many days at the company he owns. We do not let him drive anymore which is a huge part of his frustration. He constantly has calls into his doctor and lawyer to demand they get him his licence back. The doctor said in all his years practicing he has only had one other patient with such an A-type personality. The only thing he did about the license was give me a copy of the letter he sent to the DMV saying he should not be driving due to his dementia. I showed the letter to my father. He said is was silly and just ignored it as meaningless. Dad has for many years gotten angry or dismissive with any opinion or answer different then the one he wants to hear.
He has always been bull headed and tough but also always a gentleman in the very traditional way. He has now lost much of that filter. He yells at the staff, gets mad when they try to sit someone at his table and gets mad when they avoid putting people at his table. The ladies at the facility roll their eyes at him and try to avoid him.
When I went to pick him up this morning the night nurse said he was up and trying to go for a walk at 3 in the morning. When she tried to stop him he pushed her against a wall, yelled at her and had his open hand in the air as if to hit her which, thank god, he did not do. When I went into his room I found him asleep on his couch in a t-shirt and nothing else. He appeared to have no recollection of the event.
My family is scared to death they will kick him out. He refuses any medication. I am afraid we may have to have him declared incompetent and force him to take meds. Needless to say we are very desperate.
[…] this frame of mind, I begin to think of Sundowner’s Syndrome, the depressed state of dementia patients who become agitated in the late afternoon. My mom had […]
I am seeing something that I believe to be related but not typical sun-downers.
Mom just had a double hernia repair. She was only in for 2 1/2 days, but now that she is home, she is compliant during the day. But after dark, and usually when others are asleep, she begins to wander and then tries to lift heavy objects, bend over to do laundry, check and fuss with an empty dishwasher.
I just don’t know what to do, as I work 6-2 and then spend my time until bedtime with her, and then am woken up at night by moaning and complaining.
At my wits end.
Please help me understand this. My ‘grandfather’ who I have been taking care of, for some time now, was recently emitted to the hospital for an infected bug bite on his head that was spreading towards his eye. His doctor thought it would be best to have him on an IV antibiotic because the pills weren’t working fast enough. Before he was in the hospital he was a very lively man; riding his stationary bicycle every morning, walking without fault and had a wonderful sense of humor, he could also hold a conversation, as well as any could go with his short term memory loss as a result of dementia. The doctors had called me shortly after I left the hospital that night saying that he was fighting the nurses, so I went back and stayed with him until he fell asleep. The next couple of nights were rough on him and they threatened to restrain him. They ended up “giving him something to calm him down” but when I asked what it was they either refused to tell me or no one could give me the same answer as the nurse before them that I asked. When I had seen him the following day he was in a stupor and couldn’t talk or stay awake. I figured it was the medicine they gave him still keeping him “calm” but everyday that I saw him he got worse and worse. Even now that I have had him at my house for 3 weeks, he is quickly declining. Barely eating, not wanting to get out of bed and very withdrawn. A complete 180 of the man I used to know. Is this common and how do I cope with this.
Hi everyone. My mother went into hospital about three weeks ago with a heart attack, She was released and doing well. Then she fell 3 days later hit her head and had to be rushed back to hospital. During this stay she became sepsis due to a UTI. Her kidney function dropped to 25% and she quit breathing properly and had to be placed in CCU on a respirator. She came through all of this and has been placed in a regular room at the hospital and has been in there for 3 days now. She has been her funny, witty self until last night when she woke up and was tottaly confused about why she was there and didn’t believe she was in a regular hospital when I tried to explain to her what had happened to her and how sick she got. She accused me of trying to kill her and said she couldn’t trust me. My two sisters came down first thing in the morning. She did better through the day. Know my sister just called at 12 am and said mother is very agitated again and saying the same things to her. What advice can you give at this early stage of what I believe is Sundowners.
I want to thank you all for being so truthful and forthcoming. I knew I wasn’t the only one out there but at least I can read here that people actually keep their sanity and their marriage. There are so many folks in my home nursing home that no one visits for what ever reason. My mom roommate has a day or so a week where she is really sweet and then she too closes her eyes and hardly speaks. Doesn’t like to be touched or helpes. I really wish I could remember when all this started for my mom. The first sundowners was January 2010. But she would forget things well before then. I love my mom with all my heart she was always my best friend. I just cannot fix it and I am a fixer. So so Difficult. Thank you for listening.
My 70-year-old mother is bipolar and also has dementia. We put her in a nursing home several months ago, when it was clear she was no longer able to safely take her insulin or other meds on her own, and was sleeping all day and not feeding herself. Understandably, being put in a nursing home was a big change for her, and she got very depressed. After threatening to “break a vase and use it to cut” herself, they sent her for inpatient care in a geriatric psych ward of a nearby hospital. She was there about a week, and did well. She was just sent home today, and this evening, she apparently had a panic attack, and tried to use either the cord or the hose of her CPAP machine to strangle herself. So off she went to the hospital again. She has had thoughts of suicide before, but has never tried to harm herself until tonight. She has also never had a panic attack before. My sister mentioned sundowner’s syndrome, and that led me here. I’m feeling rather hopeless for my mom at this point, and don’t know what the future holds. I really don’t want her to end up in the state psychiatric hospital, but at this point, I’m wondering if that might actually be the best place for her. Does anyone have any suggestions?
I think she is in the best place, where they can monitor her, and get her extra care (like psychiatric) when needed. They should keep adjusting her meds, until they find some that can prevent and tone down her suicidal tendencies. Please don’t feel hopeless. This is an end-stage disease for her, most likely. The main thing is to keep her as comfortable and safe as you and they can. Follow the directions and suggestions of her doctors and nurses. If the psychiatric hospital is where she ends up, as I said, this might be an even safer place for her. She may get a little better on some different meds, or she may not. I hope that you can feel calm in your own spirit, for your health may suffer from this, unless you let some of it go. We don’t know why certain things happen, like disease, illness, or even death, but that is the way of this life. Be accepting, be helping, be understanding, be loving. Make the most of these last years with your mother, and feel assured, that you are doing and have done, the best that you can for her. This is what I have done, and am doing, for my father also. I hope that this helps, and will keep you in my thoughts and prayers.
My brother in law has been diagnosed with Sundowners. My sister now wants to go to the nursing home and be in the room with him. Will she be safe or is it possible that he might attack her and harm her? She is in poor health and very fragile. Will she be safe living in the room with him? The nursing is preparing for them to move in together immediately. I am concerned for her safety. Do they medicate in order to keep them calm? ‘Thanks for any facts concerning this disease.
At night my mom will often ask what time it is and then ask whether is day or night. She has not had any surgery for a long time. What would cause this confusion
thanks
Dan
The sun going down seems to be a contributing factor.
Closing the shades/blinds and turning the lights on has been a suggested mitigating factor.
It that is all correct, when do the lights get turned off?
Hi. I want to purchase a light to help my 83 year old mom who suffers from Sundowner’s Syndrome. On cloudy days it is very noticeable. She becomes very sleepy. Last week I had to cancel her doc appt due to the cloudy weather. Also late in the day she gets sleepy as well. So can anyone recommend a light for this situation?
my father aged 78 got cardiac arrest on 29th of May 2016. Angiogram and angio blast done on 1st of june2016. He was discharged on 12th of June 2016. And now he is on supplementary oxygen at home he is very tired, feeling hungry, not able to sit, cannot walk on his own for a little distance i.e. to toilet or eat by his own. His daily chores should be done by somebody. He was very healthy and active before, yogasana, walking, daily helping my mother in daily house works etc.
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My mom suffers from “wanting to go home” about every evening during the Sundowners time (although in the summer it is still light out). During the day, she is perfect! Very high functioning and living in an assisted living community. Once 4pm hits, she reverts back to her teenage years wanting to see her parents. She has even gone as far as to sneak out the window at her living facility (all other doors are locked, as this is supposed to be a secured place). I feel it is a combination of her meds, but her behavior switches so quickly, it is odd. We are looking for ANY suggestions and considering admitting her to pysch services for inpatient care. Any additional thoughts?
My father is 81. He had a small stroke in 2012. Only a tiny cognitive impairment. In last yrs he got to where he wasnt dressing or showering regularly. He has sleep apnea an refused cpap. He’s diabetic an is non- compliant. He has A-Fib (heart jumps arounds) an on Coumadin. He has Congestive Heart failure also. An asthma. He really not heslthy but its his own fault. Always did whatever he wanted whenever he wanted. Sometimes would lie about it. All this in last 7 yrs. Well now it got to where my Mom couldn’t take care of him, she did everything really, thats how there marriage was. An couldnt stay in there in gisnt home with an acre he drugg her out there to. She didnt want to move there. He stayed in robe almost all time except to Dr appt. I drive both evetywhere. I get meds. I load pill boxes. Etc…my Mom is extremely tired. She can care for herself. He thinks he can but cant fully. It came down to them having to move to a senior living community. Big mistake I think. He’s gone off deep end. They have been there since Aug 14th. About wk later the confusion an slight Sundowners started. Its gotten worse esp toward night. He had this esp bad in hospital after his stroke. Now its worse for me an my Mom in the senior living center. Its badically assisted living without med help. I do that. He csnt even put socks on. Or pants on. Putting on Depends backwards or wrong side out. Not chging them regularly. One day wore one all day. It wt 5 pds! An he’s leaking out of them. Not sure if its because their so full when he sits, they squirt on clothes or if he is having accidents. The depends dont fit real well but he wont pull them up or over his belly so legs are lose. This is everyday now. Tons of laundry ,Im doin. My Mom hurt her chest wall muscle or in between ribs muscles an cant do much rt now. So its on me. Im 47 with a husband an two teen boys an my own household an laundry. So trying to get her well letting her rest an sometimes spending night. She thinks he goona walk out door. He belligerent sometimes yo me. Iv been in medical field since 18. I know alot. He is very confused since moved. He walks out of bedroom an says “Where’s my bed?” I say” Daddy, you just came out of your bedroom. ” Sat down on hard rim of commode. It left a mark on his back. I asked why didnt you put down seat to sit on? He says” Couldnt find it.” Then I had to explain how to work shower. That was bath #1 since they had been there. He allowed me in (he extremely modest an gets upset) to show where shower curtsin goes. He has bath chair. He was puttin it around other side away fr him around chair!. He was goin to get in with Depends on. He has leaks on sheets. Keep having to chg them. Got wsterproof pad. He wasnt this bad before the move. My Mom is getttin exhausted arguing with him at every meal in dining room in front of everyone on what he knows he cant have an has it anyway an acts like a child about it. He cant put on cpap anymore. He gets up 5 times in middle of night to go to bathroom. Sits there like 30 min. I kept having to knock on door to tell him go to bed. I was exhausted. An we are still cleaning out house an shop (he was a hoarder about 70%) so doin all this is driving me to breaking point. Iv been their careyaker since he got sick an stopped driving in 2012. My sister lives 2 hrs awsy but doesnt help much an we’re fighting rt now. Im done with her. She doesnt really care. Wishes my Dad would just die already! Horrible. Yes, iv got burnout but I dont want him to suffer or die a horrible death! Im on anti-anxiety med an have depression. Its affecting my marriage an my kids. An my friendships. Iv called Heart dr an they said start with M.D (USA) an they came this morning and drew 3 vials of blood an urine sample then go in to see Dr on Thurs (7th) tk go over labs. We may have to move them AGAIN If he does have dementia. I just dont know what to do. I think its Sundowners but he was doin some bodily hygiene issues before moving an layin in bed all time. Refused cpap. So im just layin over to God. Hope he does not suffer! Love to all
Fr Tx.
[…] every confused patient gets more confused or agitated right after the sun goes down. It may be Sundowner’s or it’s just full moon. Up until now, discussions on whether moon appearance has effect […]
All the posts I have read are about are referring to older people. I’m 62 and have trouble sleeping at night ( anxiety ) and then dozing off during the day. After 4-7 days I’m so sleepy that then I’m able to go to bed and fall asleep before the anxiety hits me again.
I had a subarachnoid bleed about 12-15 years ago. I and on pain meds and a light dozeage of Diazepam. I can’t remember if I had trouble sleeping right after brain bled. Or if this or if it came about a year ago. In my mind it is only a year or that I developed this problem. I also take Dilantin so I won’t have seizures. Anyone with ideas on how to help me?
My father is 96 and has senile dementia now. I was wondering WHY every evening he gets obnoxious, and starts digging in the tooth extraction hole that was pulled 4 weeks ago, saying “I’ve got food in it”. He’s been to the dentist 2 times since then, and he showed him that he’s feeling the end of the filling in front of the hole, and the one in the tooth at the back of the hole. When he’s in there, he says “ok, I understand” “ok, I won’t let my tongue go there” and all day he’s fine. When evening comes, he’s trying to dig in the hole with his finger, or even thumb, tells me to “shut up” when I tell him he went to the dentist twice, or anything else, and just gets worse until he goes to bed. I have been his caregiver for over 3 years now, and he has just started doing this since this tooth extraction, but it gets way worse at night. So I’m thinking he has this now. His kidneys are slowly failing. If the dementia doesn’t take him, his kidneys probably will. It’s very sad to see this…
My grandmother is 67. She’s had some health problems lately, and ended up having to get surgery on her arm a few weeks ago. Since then, she’s been moody, and I frequently find her talking to herself in gibberish in the living room or other places she’d never normally go. This may be due to the fact that she refuses to stop drinking alcohol, and gets very angry when you try to take it away from her. Could she be suffering from dementia, or could it be something else?
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Has anyone tried Melatonin to help with Sundowners? My dad started experiencing Sundowners after a stroke (going crazy at night–tearing out his IV and tearing his own skin, pulling out his catheter, paranoid, accusing people of all kinds of things). One of the blessed nurses suggested that it might be Sundowners and they started giving him Melatonin in the evenings. It worked really well. Calmed him down and he sleeps well now. No paranoia. He’s still taking it (3 months later). I know Melatonin isn’t for everyone (it gives me horribly violent dreams) but maybe it would work for some?
My husband pawpaw has been taking off in the middle of the night around midnight and stays gone for hours then comes back and when they ask him where he goes he says that’s his business but he has never done this and doesn’t have dementia. He takes care of his wife and him drives goes shopping and cooks like normal ppl But his wife does Alzheimer’s and he has to take care of her.. can he still have sundowners and not have Alzheimer’s?
Hi so my mother once every few weeks only at night starts to act a very strange way. For example last night she was acting fine but then a few minutes later she couldn’t comprehend what I was trying to say to her. I went to the living room and found her over and over again straightening out the chairs in the dining room and every single chair. She wouldn’t stop until someone interrupted her. My father tried talking to her and she didn’t answer only saying “what” she moved so slow and couldn’t comprehend anything. In the morning she is fine or later in the night and I feel like she doesn’t remember what she did. What could it be?
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