References and Resources
DISCLAIMER: This site is NOT a professional medical advice, diagnosis, or treatment resource. Use it at your own risk. If you have symptoms of sundowner please consult your doctors first.
Symptoms
People with Sundowner’s Syndrome can exhibit any number of symptoms. Of course, the key is that the symptoms occur in the late afternoon or evening, or in the case of someone with more severe dementia, the symptoms worsen at night. These symptoms, which are also symptoms of Alzheimer’s Disease and other types of dementia, include:
- Rapid mood changes
- Anger
- Crying
- Agitation
- Pacing
- Fear
- Depression
- Stubbornness
- Restlessness
- Rocking
The most difficult symptoms to deal with are:
- Hallucinations
- Hiding Things
- Paranoia
- Violence
- Wandering
These symptoms can be dangerous, both for the person with the Syndrome and for anyone around them.
You may find that your loved one is suddenly seeing angels in the room or believes you have stolen something. They may not recognize you or become terrified at the thought of your leaving even for a moment. The behavior is illogical and irrational, but bear in mind that someone with Sundowner’s cannot control these behaviors.
Wandering is especially dangerous because the person with Sundowner’s will suddenly be missing and may not know where he or she is going or why. Without identification, people with the Syndrome have become lost and unable to find their way back home.
People with Sundowner’s Syndrome may also “shadow” you, following you around and doing everything you do. They might ask you questions over and over or interrupt you when you’re speaking to someone else. They may lose their full language abilities, and abstract thoughts may become especially difficult for them to comprehend.
Keep in mind that if someone has a paranoid or hallucinatory episode, there’s no point in trying to convince them they’re wrong. It simply won’t work, and they will most likely not remember the episode in the morning.
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My mother has just begun sundowning; she has been in and out of the hospital for the past year due to cancer and it’s side effects. The SD symptoms came on her suddenly and affect her with very very real hallucinations and paranoid thoughts. She remembers them too! She always feels foolish when she is herself again but expresses how very real it all seems at the time. She has tried to remove her IV”s and wound vac. If this continues they may use restraints or even haladol (sp). I haven’t researched that yet but I do remember that it is some form of strong anti psychotic med.
I have learned to not try to convince her she is hallucinating but emotionally it is very difficult.
I am sorry to hear about your Mother. I have an 81 year old Mother and she is getting more and more oobstinate. She just wrecked her car and she is on Class A narcotics on a daily basis, but I cant ger her to stop driving. Worrying about her drove my blood pressure up to 197/92 and I have decided I I have to let her do what she wants. Is is difficult to deal with this, but I don’t thing that she has sundowners syndrome maybe early dementia. Hope that things work out for you.
Smoothie you can petition the state drivers license bureau or her doctor, sometimes anonymously via website to have her drivers license reviewed and/or revoked. Simply list the medications she is on, her symptoms and conditions that make it dangerous for her to drive, and let the professionals decide if she should be on the road or not. In the meanwhile, make sure her auto insurance is paid up and perhaps start a conversation with them… It is difficult for children to upset their parents' independence, but on the other hand, if it is coming from someone else, the doctor, the state, the insurance agency, etc. It has better results… and it's more objective too. We had about 4 neighbors and 14 relatives anonymously petition our state BMV with driving concerns of our mother and grandmother, and after a 2 month review… she now has a hired driver for errands 4 hours per week. She kept the car, but she herself has not driven it in over 6 years. A good all around compromise. She has her independence and her car, but SHE"S not the one driving it! It protects her, and her neighbors driving around here, and the neighborhood children on bikes, etc.
Please disable the car. You would feel terrible if she hurt someone else. Have been thru this with several family, a hard step to become the parent. They all went to sit in their car, just never went anywhere when it didn’t work anymore altho we did have to fake some fixings etc. and contact the local machanic to play along.
Smoothie please don’t give up on stopping your Mom from driving. I moved my Mother and Father near me last summer. My Dad has been in hospitals both in their old hometown and mine since that time. Daddy is no longer an issue but Mother continues to insist she could drive. Their geriontologist tells me that there is a test that can be given to “show them” they are nolonger capable. A local professional was killed here recently when a 79 year old plowed into him pushing him into oncoming traffic. Authorities are considering pressing charges – what a tragedy for all.
I just took over the care for my dady in Feb. He had been involved in a accident & driving the wron way in traffic. He lived alone & would let no one know his business, nor be power of attorney. We brought him to the city where we live & placed him in Asst. Living. He is 91 & soon learned how to open their fire door. We had to move him to a locked memory unit. He is angry, defiant, forgetful, distrusts everyone, bags up his belonging at night. He was assessed with Alzheimers/dementia upon going to the new place. Now is exhibiting signs of sundowning. His main big worry is his money. He asks about it every few minutes. We gave him a big party there for his bd & two days later, he had completely forgotten it & the 11 family members that came. It is so sad.
Can you use game money? My son teases me that he will set me in the corner with a bilfold full of Monoply money and I’ll be happy . My dad too worried about money. I had all their mail come to me and since he saw no bills, it was easier to deal with. So hard!
dee, my dad just told me this morning that all his bills are gone, they threw them away. i had to remind him that they didn’t do that and that i have been handling them. he asked if he could get copies, i told him sure, but not sure why he’d want them. he agreed with that logic. i reminded him that he won’t have bills for electricity, gas, cable, phone since he’s at a care facility. he hasn’t been interested in even opening his mail, let alone paying bills, for the last year and a half that he lived in his old house.
On June 30, 2009 my 89 yer old father was admitted into hospital for knee surgery. The surgery went well and he was released to rehab facility 5 days later. At first he was a little disoriented with all the changes in rooms and towns (surgery was in Omaha, rebah in Manning Iowa). But could grasp situation if reminded.
2 days later my dad is unable to keep a grasp of reality – he is halucinating and seems to recognize immediate family but talks about thinks that are not happening and just can not stay in “same” time as visitors, etc. The doctor has labeled it as Sundowners – he seem less confused in morning and as day continues he starts these stories or conversations that are not real.
We are told he may get better or he may not. My biggest concern is – in all the pre-surgery conversations with the surgeon, his primary care doctor and his heart doctors, etc – why did anyone tell us that though he was approved for surgery – we may be replacing a knee with his brain, which seemed normal prior to surgery.
I am totally shocked and upset by all this. Has anyone else experienced this? And what was their outcome?
Dottie, my father went in for back surgery and came out with a stroke in fall 2008. He also has Parkinson’s, and now his dementia, and consequent sundowners syndrome, is advanced to the point where he cannot be cared for in his own home anymore. Judging by all the comments on these pages, I do not see that there is a solution to the problem. We all just have to realize that there’s nothing we can do to help them through it, can’t reason with them. We have to set limits for ourselves and can’t get sucked down into the pits with them. We have to not feel guilty about doing whatever it takes to get the person the best professional care possible (which probably doesn’t mean us at our homes). No easy answers, the way I see it. I know I am in for a long rough road, as are many of us. We can only rely on God to help us, as we are powerless to get by on our own. Good luck to you.
I experienced all of these symptoms with my mother (83) some months before she died. Unfortunately none of the nursing staff gave me any explanation even though I suggested dementia. If they had it would have been much easier to cope with and I would have visited and stayed longer (with a book or crossword) knowing that it was part of an illness and not just her being nasty. Thank you for the insight. We are just at the beginning of the anxiety in afternoon with my husband’s mother (92) and now I understand I can be more patient with her.
Mydad is 81 yearsold and had operation april 21 came home for 2weeks and then back in, he had another operation may 9th and the 12 cuz he had no circulation going to his leg he had almost lost his leg. as time went on he had been very confuse talking about things also that are not true. or seeing things and no one there. this has got me also worried and stress outt l have ask the nurse if it was the medacation age she said it was sundown too so l know what u are feeling . l pray for my dad to heal but it only getting worst. he hasent walk for 2months to skinny and week so now he has to go to a nursing home also he has try to hit my mom to. it very scary this sun down my prayers are with you people
We just are experiencing what the staff told us is “sundowning” My mom is 95 and two weeks ago she was going out to lunch, once a week and living alone and doing all her own cooking, etc. Her delight was trips to shop or just “poke” as she said. With the hot weather, she was not feeling like eating and was not drinking water either. Her sodium level fell dangerously low and she had to be hospitalized and given an IV. Three days later her levels were all normal and she went to rehab because she was so phyically weak. She is fine during the day, but by 5PM at night she is violence and screaming and does not want anyone near her. It is so unlike her as she has always been gentle and sweet. We are getting called back to the rehab center every night because the staff can’t get her medications into her. We authorized Activan, the lowest does,(anti-anxiety drug) but she won’t take it and they can’t give it to her unless she is agitated, we’d like her to have it when she’s on the edge, before she is out of control, but they tell us they can’t give it to her then. We are very frustrated with our first experience of any kind of illness with my mom. Anyone have any suggestions for us?
I have been caring for my mother-inlaw, she is 86yrs old, with Hypertension, and now was told that she has been experiencing of systoms of Sundowners, have never heard of this before. If someone has been dealing with disease, I have only seen some of the systoms,She has been hospitalized many times for hypertension. I don;t see much of the confusion, yet, but other systoms. Does the confusion come at a different time?Most of our systoms are interupting when you are talking with someone, maybe this is just the beginning.Let me know if anyone is dealing with this,
My Grandmother has recently been hospitalized with UI and suddenly today she has been diagnosed with Sundowners. After reading all of these comments, I’m wondering what is similar about all of these cases, seems most everyone was in the hospital when diagnosed. Could medication or a combination of meds be the cause of this ‘sudden’ reaction?
My father had a similar experience when he was in his late 80′s and hospitalized. He still is confused about that time period, but we did realize that medication was the triggering factor for him. He was on morphine for pain and, when the dose was reduced, the symptoms moderated. He is now 91 and no more issues with those symptoms.
Today I heard from a dear friend in her early 60′s who was hospitalized for an intestinal blockage and had surgery last week. Now she is experiencing evening depression and hallucinations, and she says someone told her it was “sunset syndrome”. I am very concerned!
My father who is 73 years old has been suffering from parkinsons for 7 years now and sunset syndrome for a few months. His sundown syndrome kicked in full force with no warnings. No sleep for anyone at night, My sister , Wife and I have been taking turns watching him at night so my mother who cares for him during the day can sleep. He wanders, forgets to use his walker or forgets how to use it. Tells me to take him home,even though he is home. Calls me his brother John who has been dead since 1972. Apparently there is nothing out there to treat this problem or so I have been told. Sleeping medicine works against him and causes him to become more confused. Any tips? wearing thin on all front’s and it appears that the final option is a nursing home or paying for private care.However I Know Both options will break the bank.
i suggest nursing home, or you can do private care until his funds run down, then get medicaid to place him somewhere. there are no good answers or solutions, but you can’t continue the way you are now. my dad’s sundowners and dementia and parkinsons has just gotten to the point where his live-in caregiver can no longer help him, so we have to get him placed into a home asap. we will be faced with the same issues you are having, once his funds run down. his social security and pension total 2200/month, and it’s really hard to get 24/7 care for that amount. i feel your pain. i pray a lot. good luck to you.
My mother had that in her last couple of years. I only recently found out this is what she had.
More than once, she would say there were children in the room, and say she heard birds chirp all night. She was invalid her last couple of years. I slept in the room with her at night. One night she thought there were other people in the house and was determined to get out of bed to see who it was. I kept telling her it was just us, but she wouldn’t believe me, kept trying to get out of bed and I had to keep restraining her. After what seemed like forever, she finally settled down and went to sleep. I was so keyed up it was a couple of hours before I could sleep. Only the grace of God kept her from trying to get up while I was sleeping and falling on the floor. I still had to get up and go to work the next morning.
Twice after I put her to bed, she woke up after a couple of hours and wanted her supper. I told her she’d already eaten, but she didn’t believe me. So I got her up, put her in her wheelchair, took her in the kitchen and fixed her something to eat. She ate, brushed her teeth, I put her back to bed and she went to sleep. The next morning she didn’t remember anything about it, and thought I was making it up when I told her about it. After that, I quit telling her things like this, because she thought she was losing her mind.
One Christmas my sister and her husband stopped by with Mama’s present. Mama was okay, but after they left, she had it in her mind that my sister was supposed to be living with us, was missing, and wanted me to go find her and call the sheriff. I kept telling her that my sister was at her house with her husband, to no avail. After she finally accepted it, or maybe just forgot all about it, she decided I was missing. I said “Mama, do you know who I am?” She said “yes, you’re Judy.” She knew I was her daughter Judy, but had it in her mind that her daughter Judy (me) was missing.
We did have a nice lady to stay with her. Mama liked her, which was rare, as Mama usually didn’t like any of the sitters we had.
My brother and sister don’t know all about this, I never told them.
I have a similar situation to Dottie’s and some of the other posts. My mother was diagnosed with colon cancer which had not spread (thank God). She survived the operation (86 years old and excellent mental and physical health). However, after the 3rd post-op day she became disoriented and started seeing people in white and bugs, etc. She knows who we are but is getting more agitated at i write this. The doctor said this condition was common in elderly patients and he was confident that she would be back as she was before the surgery (I hope that he is not lying to us). Activan (?) has been prescribed in low dosage due to her violent behavior (swinging at medical staff and me and my sisters – doesn’t do so with men though). Like Dottie said, there should have been some type of disclosure about this happening prior to surgery because we never imagined this type of complication. May God provide us with endurance to preserve during this difficult time.
My husband was very ill last year and had serious reactions to Morphine while in the hospital. One night about 1 a.m. he called me on the phone and told me to come to the hospital and bring the police. I went there and his eyes were all glassy looking and he asked where the police were? When I told him I didn’t bring them he became very agitated and said that they (someone) was removing the patients from their rooms one by one and he was next. It was a reaction to Morphine and as soon as it was daylight he was fine. Also, after being moved to a rehab center the evening nurses had a habit of asking the patients if they were ‘anxious’ and my husband said yes so he was given Ativan. He then would see bugs on the ceiling and would think he was home but couldn’t understand why I changed the cabinet to white in the kitchen when they were really the medicine cabinets in his room. His eyes would get a fixed look and it would take 24 hours for him to return to normal. This happened twice before it was determined it was the Ativan that he was having a reaction to. The head nurse told me he had sundowners but oddly once the Ativan was discontinued he was fine.
The hospital tht my dad is recently been in says he has this condition what is a for sure way to tell tht he has this condition. what should i be lookin 4 and how can help him
Oh gosh, I had never heard of this until my mother developed this when she was admitted to the hospital with a broken ankle. I talked to her on the phone 2 hours before she fell and we had a very lucid conversation. Three days in the hospital and her mental condition was horrible. They sent her to skilled nursing and she is still raising heck every night. Yells that she is in pain, but can’t tell anyone where it hurts. The nursing home staff is getting impatient, and no one knows what to do. Her previous doctor had moved away and she has a new doctor. They changed all her medications and I don’t know if this is a medication problem or really the sundowners they talk about. Everyone writes about the symptoms–has anyone had any luck with any treatment–light therapy or anything??
my grandmother is having sundown symptoms it is very difficult she lives with me and towards evening she wont let us leave her side at night she yells out to us the ativan they prescribed to her helps but it makes her sleep. she is either sleeping at 5 in a drug induced sleep or she is yelling and trying to get out of bed she is 96 and cant stand without help, iam wondering is she more content to sleep all drugged up or is she more comfortable yelling and confused, either way its heart breaking. the only thing we can do is give her ativan and hold her hand.
Since my December post, they put my mother on Xanax and Lexapro. She sleeps a lot and the yelling and sundowners symptoms seem to be under control The downside is the excessive sleeping and more dementia. There are six kids in our family and we have all decided that we prefer mother in this state. She seems quite happy and has stopped assaulting the CNAs. Before she would get almost a wild look in her eyes. Her old sparkle is back, but she mostly doesn’t know what planet she’s on. This may be as close to happy as she can get. It’s not a pleasant way to spend her last years, but if she seems happy, we can be happy too.
My mother in law has just been diagnosed with sundowner syndrome. She has pneumonia as well as recently being diagnosed with lung cancer. She is experiencing all of the things that have been mentioned. She is pretty good in the morning, but around 3 p.m. or so she starts seeing things. She hears and sees birds, people in white, thinks she is in jail and the nurses are her jailers, she most recently has had the nurses call us in the middle of the night because she doesn’t remember where she is, doesn’t know who the nurses are. She doesn’t want to be left alone. She wants us there at all hours of the day and night (mostly night). Today they have assigned a cna to stay with her twenty four – seven. She trys to get out of bed and has succeeded in doing so a couple of times (thank god she didn’t fall). It is so heart breaking to see her in this condition as she too is a wonderful loving kind and caring person that has lived by herself until recently. My husband and I want her to come and live with us when she gets out of the hospital, but we both work and we know that it is going to be a hard road to hoe with watching her and trying to get our rest so we can do our jobs as well. The doctor today put on haladon, we are just hoping and praying this will help. We may have to do as Gloria (above) has done and put her on Xanax and Lexapro at least then we would know that she would be safe and not get up and end up wandering and leave the house. It just kills us to see her in this condition. We would appreciate any knowledge that anyone might have on this condition.
It is pretty obvious that this syndrome is exacerbated by hospitalization, surgery and all the drugs that go along with it, probably the general anesthetics, too. Don’t forget that at the hospital they wake the patient all the time to check vital signs, take blood and even to empty the trash~it is quite barbaric to me.
The way I solved this was to refuse any surgery for my mother, who is 85, and will not let her go to the hospital ever again. She is old enough and not afraid to die a natural death without all these “enhancements” the medical system throws at us all. BEWARE!
Your elderly loved one does not have to suffer like this. Who says they need surgery? We are only on this Planet Earth for a very short time, actually. We all leave it. Why not let it happen naturally is my thought. Thank you for reading this.
i agree with what you say sharon. my dad had a really bad time with delirium after his back surgery and stroke while in the hospital. they had to put him in restraints. it’s just not a good environment for most people.
My Mother is 80 and suffered a mild heart failure and had pneumonia. She went to ICU last Friday and it is a very small area with no windows. I visited Mom last night because I called and the Nurse said she was disoriented. I saw her that morning and she was fine but last night she was not even my Mom–she was saying all of them were crooks and that she would not let them give her medication anymore. I am not even sure she knew who I was. I was very upset and demanded to speak to her Doctor who is on staff and happened to be there and he told me it was Sundown Syndrome. I truly believe that all of the tests they did and the medication caused this. The Doctor told me it was not serious or permanent but I am concerned because this happened to my Grandmother and she passed away shortly after her confusion from all of the drugs they had her on. My prayers go out to everyone who is dealing with this situation.
Wow Nancy – your situation is very similar to what my family is going through. Our mother is 85 yo and has had health issues due to an accident many years before. She has dealt with it well and didn’t let it slow her down…until the past 2 years where the decline is noticeable. She really started going downhill when she was admitted into the hospital a couple of months ago. She has since been released and is cared for in her home. But she is slipping fast. We are all in agreement, no more drugs to treat ‘this or that’, just keep her comfortable and she will go when she’s ready. She is at peace with this and so is the family. We too believe that many of the meds they have prescribed to her over the years have exacerbated the problem as well. God bless.
This sundowning is very scary when you know nothing about it. My Dad was hospitalized this past summer with an infection that almost killed him. He is 86. One day upon visiting him he was extremely agitated and we were told that he had sundowning. Our Dr. was very kind and informative regarding the whole issue as was the nursing staff. After a family visit one night where he was so abusive physically and verbally, we all decided to leave and let the staff handle it. This was truly not the father we knew. It was very difficult to witness but we all decided to go have dinner and a drink and let the staff handle it and get some R&R. We were very fortunate that this was a temporary thing, not more than a week, but it does take its’ toll on the loved ones. He doesn’t remember any of it! You are all in my thoughts and prayers. Caring for our aging parents is sometimes very difficult but so were we growing up at times
my mother has episodes of sun-downers syndrome. when night falls,out comes the checkbook,shes thinking about unpaid bills[which have been paid] and shes worrying about her bankbook being lost.[the bank no longer uses bankbooks]. she paces and cant concentrate on television or any tasks.nights are miserable for me..its 3.30 am now and i just got my mom settled in bed.i would like to knock her out at night with a sleeping tablet.crying and fear are norm at night. i’m tired and might as well stay awake as we have a early doctors appointment.its not getting easier and now think i should take the house keys in the evening..in the daytime she is not too bad but very absent minded.my mother is going to outlive me because the strain of caring for her is taking its toll.its harder for a guy being a caregiver…my patience is not my best quality.
My husband who turns 77 tomorrow, has been experiencing sundowners for the past 5 months. He ahd a severe fall last August; damaged nerves and has lost the use of his left arm. In Dec., we went to Florida to stay for 6 weeks at our condo. He then started hallucinating; thought people were in our bedroom; thought our living room was the bank lobby and one nite—army barracks. On Christmas morning a one o’clock, I heard him open the front door then close it. Found him walking down the street with his pjs and sport coat on. Needless to say, after two weeks, we returned home. I thought I was going to loose my mind. Ovetr-the-counter sleeping aids didn’t work. After returning home, his neusrologist prescribed seroquel for the hallucinations. The sundowning has gotten worse and he asks sometimes who I am.and every nite wants me to take him home. He paces; seems very confused; agitated, etcx. I will be 65 in Nov. and sometimes I feel like I’m 80. His mother died in 2000 and was in a nursing home for 7 years. I saw inklings of dementia in my husband when his mother was ill—I would say for the past ten years. It’s a nasty disease. Nasty, nasty!
So sorry you have to deal with this challange, I hope you can arrange to get some help or at least a relief person once in awhile. You have to take care of yourself too. At least you do know what it is and why it is happening~~I know, that doesn’t make it any easier.
What you described sounds like my father-in-law. His doctor prescribed zyprexa, and that has helped enormously!
My father was just diagnosed with a massive cerebral hemmorage. He has little to no language skills and is now displaying signs of sundown syndrome. He is only 50 years old. We are trying to get him into a rehabilitation center, but he’s being denied left and right because he either “does not qualify” or is not “ambular enough”. Does anyone know of anywhere that may take him, or any home care practices? I can’t be home with him, i have a 2 year old to support and my mom is now the only one working. We cannot leave him home by himself.
I’ve been reading up on all these comments and after researching on this illness I too think my grandmother is suffering from this, I noticed not only after my grandfather passed away in 2007 that not too long afterward she started suffering with depression which i thought was normal due to the sudden changes in life without him around. She decided to go live with her kids out of state which was fine by me because they are all older and able to look after her more.
I’m married with a 3 year old boy. Me and my wife are 25 and 24 years old now, after she moved out of state we constantly got calls from the family there saying that she was becoming unstable and angry cursing at the kids and trying to fight with everyone. They decided to try and put her in a nursing home. I got angry because I helped with my grandfather till he passed. He had the first stages of Alzheimer’s, being that I’m an EMT and my wife is a nurse, we decided that since she and my grandfather raised me from a baby that I should return the favor and help her out.
So now here’s the issue. Over 2 years later having to deal with her constantly getting worse (and my 3 year old loves to be around her now he’s losing sleep), I’m losing sleep and I had to quit my job to take care of her. She’s always up all night long either drinking coffee or outside talking to herself at 3 in the morning. We live in apartments and had APS called on us because she told someone we’re stealing her money and locking her in her room. The truth is she locks herself in her room and spends all of her social security buying junk and toys for my son even though I told her not to waste her money. She does help with the rent here due to being an extra person we can’t afford to pay her bills and ours, but now I’m going back to work because I’m making the decision to have her put in a nursing home.
I’m way too young to deal with this and my son doesn’t need to grow up being exposed to this type of issue. Her children are more capable of handling this but don’t care about her. Sure me and my wife have medical experience and are used to being around this type of behavior but our jobs don’t require us to live with our patients so its a totally different ballgame. And I can associate with you guys about the driving issue. She wanted to start driving again, but after she ran through an intersection and a red light 2 years ago causing a family in an suv with young children to lose control and almost caused a pileup, I banned her from ever driving again. I have to deal with accidents in my line of work every day and alot of them are elderly drivers or either typical drunks or just being stupid, but regardless they’re either gonna kill someone or get killed.
I love her dearly but I cannot take it anymore. She raised me, yes, but now I have to raise my son. I wish there was another way, medication or something to help, I’m gonna talk to her Dr. (that she refuses to see anymore due to the fact he wants to give her a mental evaluation) and find out any other methods because I know how nursing homes are they abuse the patients there and treat them like crap. My wife worked at several of them for 4 years and I bring patients back and forth to them. It’s a last resort before death.
Thank you all for any support. I know you too have issues and probably have heard this all before but I’m at wit’s end, sorry for being so long writing this all.
John, i can only wish you the best of luck. once they get combative and actually try to hurt someone, housing (outside of skilled nursing) becomes extremely difficult to find, unless funds are unlimited of course. that fact that she is a woman makes it a little easier, as male beds are harder to come by. my dad recently got violent and got kicked out of 2 different assisted living facilities. we ended up having to bring him to a hospital because no one else would take him. we just told the hospital that there was no one available to pick him up and that we couldn’t find a place for him. my dad doesn’t have the income or savings to afford a private pay locked facility. his funds will run out in a month or two and we have applied for medi-cal (medicaid in other states). the number of facilities that will take a combative dementia patient that also take medicaid are really limited. we just found a place several hours from his hometown that agreed to take him. it’s a nursing home in a bad part of L.A. and it has a low rating on medicare.gov. no choice. i am sure it’s brutal in there, but what can we do? you’re in a tough spot that most likely won’t get much easier if ever at all. please let us know what happens.
I made her an appt. at her dr. today and he acted like i was the one that was crazy, but hes a very lousy dr. alot of paramedics i work with claim to be more medically skiled than him, anyways hes got a bad rep for handin out scrips for narcotics like candy, anyways he said he couldn’t do anything for her since he didn’t see anything wrong, but he doesn’t live with her i do so i know a little more about how she is, she acts better during daylight hours but she still says and does things i cant explain, like accusing me of off the wall things i’ve never done like intoxicating my child and i don’t even drink and then saying that her brother is coming to pick her up tomorrow night but he lives over 10 hours away and i checked her prepaid phone we got her and no calls placed, i then decided to call the aps worker who came out before since i never got to speak with her i figured maybe id let her know whats going on, she told me the to seek a neurologist and if she refused to go then make an excuse like tell my mother that shes going for a check up or something to a dr her dr referred her to, i think this is all a bunch of crazy mess i should’ve never had to deal with in the first place, but to make it all even worse we get home from the dr and she starts arguing again and this time the nosy neighbors upstairs that loves to get involved and cause more drama calls the manager of the apartments and now she comes out askin what the problem is and sayin that since my mom isnt on the lease agreement to kick her out if we’re having probs but now where is she supposed to go with no money and only making just about $685 a month social security and ssi combined, sure she draws food stamps $200 a month but she buys tons of fried foods or things to fry which is gonna end up killing her cholesterol levels, but thanks for the follow up, i can say shes not violent towards anyone but me and my wife, everyone else has to listen to her outrageous lies and storys and constantly making me and my wife look like bad parents, i’m a very well respected guy with law enforcement and ems and my wife is a respected nurse at a local hospital, and for her to be running her mouth and getting the cops and cps and aps called on us is gonna ruin our careers and reputation, i love my mother and shes really my gma but raised me from a baby due to my poor excuse for birthmother, but now i have a family of my own and i have to set a good example for my son whos turning 3 this aug 9th, so in order for me to continue my life without problems and stress in an allready stressfull world and workplace i’m gonna have to find her different living arrangements, other than that i hope her the best and its like aps told me if shes not declared mentally incomp. then theres nothing i can do except let her go, so now what happens if she buys a car and kills someone or herself or gets her own place in a senior community and wanders off gets lost or forgets where shes goin or burns the place down, i left the kitchen for 2 mins and went into my room, i have no clue what she was cooking or doing but 20 mins later i walk in there and its kinda warm i look and the stove is on, she dont remember turning it on, my son coulda got burned or something couldve caught flame, i dont know how many house fires ive been to due to elderly people forgetting and leaving the stove/oven/furnace on or lighting a ciggerate and forgetting to put it out, now im worried imma have one of those cases on my hand again only its gonna be my mother im going to have to go out to, i offically think my life sucks now lol anyways guys im probably the worst complainer on her im sorry but i’d much rather vent here than around her cause it would only make matters worse lol thanks again
John, you’re not complaining, you are venting. Big difference. That is what these forums are for – a safe place to let it all out.
So if she gets food stamps, i assume that means she is already approved with a Medicaid card? If so, they will pay for skilled nursing care for her. You need to get her out of your place (especially if it’s violating your lease, among other reasons) asap and get her placed in a facility before her condition progresses and she gets more difficult to place. If she’s already been violent with you guys, it’s pretty probable that she will get that way with others as her brain deteriorates. Get her in while she’s still somewhat easy for others to deal with (without sedatives and restraints). Call your local Medicaid office if you need help and be persistent if you don’t get answers. They are always overworked so you have to stay on top of them. You can google your state’s list of medicaid offices. You’ve done everything you can for her, regardless of her raising you as a child. You can’t ruin your marriage and family life because of her. Plenty of fires are caused by the elderly using the stove or smoking, by the way. It’s a real threat.
yea thats what i’m afraid of is when it gets worse, but she had a card and is approved for the medical care, i guess i kind of never pictured her this way, same thing with my dad before he passed, in my head i never thought he would pass away anytime soon because he was a strong individual, but almost 90 it was really time for him to go and he lived a great life but then shes almost 80 now so im sure that the only reason i’ve even waited this long is because i’m having the same feelin about her, and to make it worse her and my son are attacted severely thats the only thing she claims to live for is him and we’re all she has, and to tell you the truth the only sense of peace she ever gets is when she gets to spend time with him, its when he has to go spend the week with my mother in law or we go out and he comes with us then she gets depressed like her whole world is empty she loves kids and i know when she move out whether its to a nursing facility or a normal home that shes gonna become worse due no not being around him or us, she may act abusive to me and my wife and most of the time its just verbal abuse, but when it comes down to being alone and not having us anymore she doesn’t wanna leave, she acts like every month shes gonna just up and move out somewhere but the economy will not allow it due to her income, even with me and my wife making decent pay we still are having to go back to school for a few more years to bump it up to secure our finances, but i guess back when she was young she didn’t make any plans for the future and my dad was the only major source of income for her due to his veterans pension and speaking of she applied for a widows pension and i know they’re just beating around the bush till she dies, thats how they treated my dad he was fully disabled and when he moved to another state some reason was not declared disabled anymore and declined his full benefits, so after fighting to get it back for 2 or 3 years he passed away now shes dealing with the same issue, but thanks you guys been so supportive, imma try to get this fixed and hopefully it works out for the best and she ends up living comfortable the rest of her days
John, your son will get over it. So will she. Most likely her condition will progress to where she doesn’t know who he is anyway. Also there is no guarantee for the future that she will be peaceful and calm just because she is around you guys. That will probably change too, but maybe a bit slower than if you weren’t around. Heck, she’s already abusive to you! That is a good indicator of things to come, I say. My dad is only 71 and when I went to California to move him into his first assisted living environment, he swore he couldn’t make it without me (I live in NM). That was in April. When I came home I was talking to him twice a day on the phone. Now, 3 facilites later, he isn’t even asking for me and he can’t carry on a coherent phone conversation. I certainly hope your gma’s condition doesn’t move that fast, but you never know. You have to do what is right for you and your family. Her life is coming to a close, yours is just starting. Someone recently told me that when it comes to senior care issues, there is often to “good answer” or solution. It’s just the best choice you can make given the circumstances at the time. That can mean making some choices you swore you would never make and that other people will think is awful and terrible. You can’t worry about them. They don’t live with her and don’t understand. Check out nursing homes’ ratings on medicare.gov/nhcompare/. You are probably familiar with most in your area anyway. It may even get to the point, like it is for me now with my dad, that she will be unhappy, uncomfortable, scared, confused, and that the situation seems intolerable. Sometimes there is nothing you can do about it too, but be supportive by the sidelines where you can. Start distancing yourself slowly now, and it will be easier for you all later. It sucks, plain and simple.
My mother was just recenty (2 weeks today) put into a nursing home. She had fallen and broken her hip and had to have surgery. She is also recently blind from macular degeneration. At times she demonstrates some of the symptoms of Sundownners. She sees a man a night, she doesn’t know who he is or why he is there. She gets aggitated or sad and lonely. It is very heart breaking to see my mom like this. She is tiny, frail, and frankly…. not my mother. My mother was fiesty, independant, fresh, fun to be with, she loved going out. I don’t know who this person in her shell is. It has been very difficult for me and my sister. We tried for 2 years (the last time she fell and got hurt) to get her to agree to assisted living… but she wouldn’t. She wouldn’t even wear the life alert bracelet because she said she didn’t need it. Now she is in a nursing home and all we want is for her to find some happiness in the whatever time she has left in this life. But she is so moody, grouchy, rude, sad, feeling sorry for herself and playing the guilt card with my sister and I – “my children have abandoned me here”, or “Help me, I’m scared, I don’t know where I am. Take me home” . We feel terrible for her, we get frustrated and unfortunately sometimes we yell back at her. I know she can’t help the way she is, I know that. But it is so very hard and I feel terrible when I have gone back at her. I imagine these are all normal feelings… I don’t like it. I want MY mother back. But realisticly, I know she is gone – replaced by this stranger. We are hopeful that she will adapt to the nursing home and want to take part in life…… she has not left the house in nearly 2 years and was living like a hermit, was not taking care of herself hygenically….. ate less than a mouse. She never seemed to care about anything, other than obsessing over things like did the mail man come yet…. was the phone bill paid….. I’m just hoping that Mom will adjust to living in the nursing home where she will be well cared for, safe, well fed, and have people around her. I want her to have some joy in her life. We did the best we could for her. We were there as often as we could (we both have families and work full-time). Mom refused to move in with either of us. She is/was a very stubbon woman. However, I understand not wanting to leave her home of 58 years. I hated leaving my house when I got divorced and had to sell it. …
So sorry for going on and on…. I just want the best for Mom.
Welela, how you feel is normal and you’re only human. These situations are very frustrating and angry-making, so it’s practically impossible to be close to the situation and not respond poorly sometimes. You did the right thing for her. She is sounding like my dad. He’s not the same person anymore either. He also lived most of his later life as a hermit and didn’t want to leave his home. He is also scared and miserable now and wants to die. Unfortunately for him (I say this because death would be a blessing at this point), he doesn’t have a terminal illness and his body is still pretty strong, although weakening more and more all the time. Like I said to John, sometimes there is no happy good solution and they will just be unhappy until the end. It would be great if your mom would adjust, let’s hope for that at least. Not gonna happen for my dad though. It’s all very sad for everyone. Hang in. Sometimes the best isn’t good enough, I know.
Thanks Tammy. You’re are so right, sometimes our best is not enough. At this point we have to do what we know to be the best thing for her. Being in a nursing home is the best thing. She still doesn’t know, at least we have not confirmed it, that she is not going to go home. We are pretty sure she knows. But the social worker said we need to give her some time to get adjusted. Mom actually went out today on a bus trip to the boardwalk and to lunch. THat is the first time in years she has been out without my sister or I. When I found this out tonight I cried tears of happiness. The social worker said if we tell her now that she’s not going home, she might have a set back. Also, she is not aware yet that I have to liquidate her assets to pay for her care. I have her power of attorney. I feel terrible doing everything behind her back, and actually cannot bring myself to do anymore until she is aware of what I have to do. Today happened to be a good day for her and it was a relief for us too. But, I know that tomorrow she could very well be angry, nasty, sad… dilusional (she actually thought one day that she had been abducted and that we would never find her – that was heartbreaking) and beg us to take her home. I just want her to be safe, well-cared for and happy. I don’t think that is too much to ask for as a way for someone to end their life. Otherwise (if she’s not comfortable there and finding some joy) she’s just in the “waiting room” for death.
Welela (beautiful name, btw, where does it originate from?),
I am also the power of attorney and have pretty much finished liquidating the assets. Once I get to $2000 then Medi-Cal can approve him (like Medicaid in other states). Very scary. My dad is just in the waiting room for death right now and it’s awful. I am so happy to hear how your mom go to go out! That is wonderful news. Hopefully that trend will continue. It is indeed difficult to balance when to be honest and when to keep things from them for their own good. Best wishes for you all!
I am told “Welela” originates from Native Americans and it means “little hummingbird”.
I heard from my sister today. She said Mom loved going on the bus trip and can’t wait for the next one. We are so happy that she feels that way. I know tomorrow could be different, but for today she is happy and that makes me happy.
When she is having a bad day, which seems to be most of her days, she too is just waiting for death…. saying she wishes she were dead…. why is she alive…. things of that nature. I can’t seem to bring myself to do anything more with her finances until she knows she isnt’ going home…. I don’t know why, I just can’t do it. Then I have to spend her money down to $2000 for Medicaid – terrible thing to have to do. I had to do that for my Uncle, my mother’s brother. However, he was fine with me handling his finances and never gave it a second thought. But it’s different with my mother, maybe because I know how obsessive she has become about her money and her bills.
I’m sorry to hear about your dad, and I’m sorry that you have to go through this. Hopefully you have help and a good support system. It’s me and my younger sister… our older sister and brother are not helpful at all. But you can bet when the time comes, they be there with their hands out to get their share of the house sale proceeds. (Sorry, that is not very nice – I know.) My daughter is good about going to visit my mother, but she tends to be a bit judgmental of my sister and I. She doesn’t understand the frustration and emotions that go along with an elderly mother who is in the situation my mother is in and having to make all these decisions. We’ve come to words several times over this and I really hate it.
Oh well, life goes on. Thanks for letting me vent Tammy. My shoulder is here for you should you need it, and my ears are open.
Best wishes to you.
My grandmother has a pretty bad case of SD. Her syptoms began at around 4 or 5pm. Shell walk around the house checking all the windows and doors making sure they are closed and locked. She will check every 10 or 15 minutes because she has forgotten that she already checked. Her reasoning for doing this obsessively? “There are too many crazies out there and they can come in and kill us”. This is her response every time. It never varies. Another problem she has is constantly asking my grandfather if she has water and tissues by the bed, if there are enough covers, if the nightlight is in the bathroom and other various questions that normal people would worry about once they actually are going to bed, not hours before. She will ask these questions every 10 or so minutes for the entire night. She will also get up randomly and walk aimlessly through the house looking at things and even picking them up and moving them for no apparent reason. No one can figure out why she does these things and it gets extremely annoying.
I totally understand the feeling of annoyance. I think it’s a pretty normal feeling for the family. I feel a lot of anger and it doesn’t seem to be changing for me (better or worse). My sister tells me that Mom is now getting very nasty with the aids that help her, very very rude and nasty. Sis also says that Mom doesn’t want her to leave at night and gets very agitated…. making Sis check this, check that, put this here or put it there… did you do this, did you do that? Sis says it is very annoying, frustrating and disturbing at the same time. My brother goes to visit Mom and he gets her all upset talking about finances … when my Mother then dwells on. I have to take care of the finances and I don’t mind, but my brother needs to stop talking with Mom about it and upsetting her. I could go on an on and on…….
My mom is 86. and has been dealing with dementia for last several years – now have been told she has severe dementia – hallucinations , confusion off and on during day — by 5 pm sundowners almost always kicks in — tonight very bad – confusion, yelling , cussing – telling me to go to hell – I live with her – work at home with my job – my sisters will not help. Nursing home not an option – she is a retired nurse and has thratened many times to kill herself if that happens. I am a nurse and I believe she would do that. I want her to have as gooid a life as possible but frustrating
I thought I had it rough. My thoughts and prayers for you and your mom.
my father has episodes of being afraid of my mother at bed time. He locks the door to his bedroom and baracades the door. We have not noticed any other symtoms.
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