Besides medications, there are a few treatments for sundowners elderly patients. Music has been used in nursing homes for many years to help calm agitated behavior. Other sounds that sometimes help are recordings of ocean waves or singing birds.
In studies where soothing touch was used to calm a person with Sundowner’s, it only seemed to work with those who were not angry or violent. You can try hand holding, hand massage, or affectionate touch if your loved one isn’t in an angry state.
Some people have even tried aromatherapy treatments to calm agitation, and more and more nursing homes bring animals into the facility to interact with the patients. The results have been very positive. Reminiscing with your loved one may also be helpful as long as it evokes positive memories from the past.
Herbs such as Ginkgo Biloba and St. John’s Wort have been used to assist patients with dementia and Sundowning Syndrome, as well as Vitamin E, but these may or may not offer some subtle decrease in symptoms. Again, the treatment depends very much upon the individual. Currently, medical marijuana is being considered as a proposed treatment for dementia by some doctors.
Light therapy can be especially helpful when used as a treatment for sundowners in elderly patients, although again, it may or may not diminish symptoms, depending upon the individual. Lightboxes are available that mimic sunlight. The person with Sundowners must sit close to the light for a period of time, although they can do so while watching television, reading, eating, etc. The lightbox is probably best used in the morning hours and can make a big difference if the Sundown patient also suffers from depression.
When You Need Help
No matter how much you want to care for your loved one with Sundowner’s Syndrome, it may eventually become too difficult for you to do so. If that is the case, there are numerous wonderful facilities that will serve as a permanent home for your loved one. These facilities are well-trained to deal with dementia symptoms. In fact, there are special units for the care of Alzheimer’s patients. They are specifically designed to maintain safety and prevent agitation as much as possible.
The social interaction available in nursing facilities is often very beneficial to patients with dementia and Sundowning. Wandering becomes much less dangerous in institutional settings where doors are locked and staff is always available.
If your loved one has lost control of bodily functions, this is one of the hardest things to manage at home. If a person isn’t washed immediately after urinating or defecating, skin infections can develop quickly. There is also an enormous risk of life-threatening bed sores if a patient gets to the point where they are bedridden. In such cases, patients may need to be turned on an hourly basis to prevent bed sores.
If you need help but don’t want to place your loved one in a nursing home, you may be able to locate a home health aide for when you’re at work or even an adult daycare center, which are beginning to sprout up all over the country.
If money is an issue, check into government programs which might help you. Medicaid can often pay for assistance, even in the home.
Whatever you do, make sure you have a support system. Treatment for Sundowners in elderly patients is extremely stressful, and in order to take care of your loved one, you must also take care of yourself.
71 replies on “Treatment for sundowners in elderly”
Hi to all of your, I believe my mom, 77 yesr old, also living with me since last September 2010, has sundowners. She has a doctors appt. next Wed. in which they will check her out and hopefully give me conclusive answers. My husband and I take care of her, my grandchildren come by pretty
often, but I don’t want them to feel burdened, (they have families and work too). My sister and her “clan” do nothing more than call once in a blue moon. My question is this: How do I involve my sister as far as letting her know of Mom’s condition and what about her helping ot somehow, maybe financially? We need to hire someone to come a couple of times a week to help with bathing, etc. I know she will come up with some cock-eyed excuse, like her ailments, but it’s wearing all of us out. I have quit my job and my husband supports me all the way. This situationn has turned my life upside down. Mom takes Ativan at 5:00 in the evening and so far so good. She has started forgetting and asks me the same questions right after I have already answered them. She has always “collected” napkins and now is twisting them along with a host of other things. She uses a walker to get alittlle exercise, but otherwise just sits and watches TV in her pajamas, I gave up trying to help her do anything else for now. Anyone have any ideas about getting others to help? My mom and dad did so much for my sister; She really does owe something!!!!! Thanks, and God bless each of you.
My mom is 96, has had dementia for several years and now has severe sundowners syndrome and lives in Phoenix, AZ. After taking her to the ER and having her admitted into the hospital, the social worker told us we should talk to HOSPICE. We found out that they and Medicare are now recognizing dementia as terminal and life-ending as it is incurable and therefore take dementia patients. She is now a patient of HOSPICE and is given many benefits including visits from nurses, doctors, support staff to help bathe her, etc. They moved her into one of their facilities for a short period of time and are working on determining what meds will work with her and help her. We have found that when she starts becoming agitated, she needs something to do to help occupy her mind and hands. Staff at the HOSPICE facility suggested having her fold washclothes (they have a basket full of unfolded washclothes just for this) or even fold napkins (buy a new package at the store for this purpose). Hopefully the HOSPICE in your area is also moving this direction and can offer help.
Anne, which hospice agency did you speak with? My Mother has sundowner’s and is 92.
Hospice of the Valley. They are the best as they are non-profit and offer excellent care.
Hospice of the Valley is wonderful. They cared for my sister and my mother a year apart.
They were so helpful and compassionate, they were beyond amazing.
I owe them so much!
Anne,
My dad is 95 and just developed dementia after two bladder surgeries in Jan and subsequent UTIs. It’s been quite the ordeal over the past 6 months. I’m scared that this situation can last for years. It’s emotionally draining to be POA for healthcare and responsible for making decisions on meds. We’ve had hospice involved for the past 2 months as I really thought dad was going to pass away – he was totally out of it. He pulled through that period but have yet to find a way to control sundowners. A lot of nurses spoke about haldol but no dr. has prescribed it yet. Respiradol is the same family of drugs & tonight we tripled the dose and intend to also give respidol a sleep aid if needed. The caregiver has been instructed to do this. Dad is fortunate to afford 24 hour care in his home but it’s amazing to think about how many caregivers it takes to fill his needs. For being such an independent man that stayed to himself –he is so very needy now. Besides 24 hr caregivers, my siblings and our spouses all pitch in to keep him occupied and content. My brother lives on the same street and stops by every day practically. Having different care givers at night confuses dad. We’ve taken dad to the best geriatric psychiatrist in Cleveland who thinks he is doing well. That’s because dad enjoys doctor appointments and puts on a great show for them (and his family). Certain caregivers irritate him to no end and we have gone through many over the course of 6 months. I really can’t imagine this going on for years…..God have mercy on us all. Hospice says that he will be evaluated & may graduate out of their program. How is your mom doing now?
We had to put Mom in a group home that has knowledge of Sundowners and Dementia. The first group home was horrible – they said they knew how to handle Sundowners and Dementia and when she was up for 2 nights, they couldn’t deal with it and evicted her. Hospice stepped in and moved her to one of their facilities for a week and a half and then we just moved her to a second home. This was done just 2 days ago so she’s not comfrotable yet and hasn’t accepted it, but she doesn’t recognize her home and doesn’t know where her “property” is. She spends a lot of time living in the time of her youth – looking for people from her childhood and wants to see her parents and siblings. It’s so sad watching her slip away. All we can hope for now is that meds help control the agitation and wakefullness but from what I’m reading, that may not be the case. But at least the hospice nurse is working with the hospice doctor and he is prescribing them. So we make sure she’s in a good location where she’s safe and taken care of. Your father is very fortunate to be able to pay for in-home care. May God bless every one of us that are having to deal with this.
Read your last of May 18,2011. My gentleman friend is 83. Sundowners is not readily available to all searching for info. We do have health aides 3 times a week. He makes the bed with me in it! He also is folding and refolding all towels, etc……Larry keeps losing things in the bed. There is nothing to lose, he say’s things disappear.! Such a nice man and I love him, BUT, I hate this debillating disease. Respectfully request any further info. THANX…
Hi. Say your comment. Wanted to let you know that we contacted the department of the aging. They drove 30 miles one way to bath my mother everyday. Also gave us 6 hours a week for care and 4 hour a week for a cleaner. You might check into that. Gives you a chance to get away.
In my prayers. It’s hard. Just always take care of yourself so you don’t get sick from exhaustion.
Hi Sherry, I want to know I have read your comment and have listen carefully to your concerns. First I want to say that it is not any easy task when caring for a parent who has dementia/Alzheimer. Lets start with mom. You may try working on a routine for mom doing daily stuff such as ADL’s, brushing her teeth, breakfast, little exercise(range of motion) sort of stuff. However, these things has to be done at the same time everyday or she will become confuse. Too many people around her will add to the confusion as well. Less is best with any dementia/Alzheimer person. Less choices, less noise, redirect with gentle tone and touch. Now you have to be patience, secondly, you must take respite for you. you have to take a few days or hours away for you. Have one person who mom will trust. Trust is good you can get her to do a lot for you when there is trust. You may need to have a sit down meeting with your family and see who is willing to step up and help you with mom. Sherry, not everyone has the ability as you do to care for your mom and if no one has say to you that you are doing a wonderful job, then I will be the first. Its a stuff job, but it can be simplify by being on a schedule and reading articles on this topic will alleviate some of your distress. I hope that this help you and all the best.
Truth 905.
I have 2 sisters: one very involved and the other not at all. We came to the realization long ago that we can’t “make” the 3rd sister help. I am fortunate that there are 2 of us cooperating. We have turned to a nursing home and it really has been a relief. We are fortunate that Dad likes where he is. God bless you for doing what you are. Remember that you are limited in what you can do with the given situation and don’t beat yourself up. Take care of yourself.
You may want to try face timing or Skyping your loved one with your mom present, so she can see how mom is progressivery declining in health . Unfortunately, there is no formula to get siblings to do their fair share with an ailing parent. Adult day care centers are nice for socializing with people her same age and can provide a break for you. Nursing homes provide respit care for when you go on vacation. Puzzles, Bingo, memory games , music and light boxes can help with anxiety or agitation. Pets, like Cats or small puppies are quite soothing. Try to get her up and fully dressed daily, to assimilate anot average day of life for her. Having her help with folding towels, will make her feel needed. Short term memory , helps with scrap books, showing people, places and events familiar to her.
Just a few thoughts, God bless you and your Mom.
My grandfather has been diagnosed with dimensia and but Alzheimer’s runs in family,he will also ask the same questions over through the day, but he stills knows who he is plus who my wife and i are.nobody was here before making sure that he was getting what he needed but since we’ve been here he has made a big turn around we know it will get worse but jus being there and making sure he is fed and taking his meds on schedule and keeping conversation. Don’t tell them no they can’t ,give them options,there old and set in there ways. Telling them they can’t is not what to do.
My grandmother has demienta shes had it for a few years. she in the past 2 months has had a decline and now me and my mother are her 24 care unit. we are not trained nurses. i have noticed the past 2 weeks or more around 3 pm to about 8:30 pm she is angry and wants to leave swears her house isnt her house. she cant remeber who anyone is and when u tell her she gets angry. shes threatend us and has hit me before. she wants to leave any nothing we can do will calim her down. shes even on xanx to help sleep. they make her mader and more aggitaed. the nurse is saying she needs to go to a nursing home but it will be a few weeks before we get that help..but does anyone know any ideas or a different meds we can ask her drs about?
MIL fell and broke her femur. She was in rehab for 2 months. Every day we would go to see her and she would be agitated and talking about the night nurses. She would tell us all sorts of stories. Problem was, we believed her, then we were told she has sundowners syndrome. The things she’s saying are all lies but I’ve learned by reading the posts here that it’s what she believes to be true in her mind. She’s now home with an aide. There isn’t much money but we’re trying to keep her out of a nursing home as long as possible. We’ve been taking care of her for 15 years since her husband died. She lives 10 minutes away and I do everything for her. We knew she had dementia but this sundowners is new. Home health care is extremely expensive but we have to work and can’t be there 24/7. I think eventually we will have to succomb and place her in a nursing home. Not an easy decision to make. The aide called me at 6 A.M. asking me to come because she had kept her up since 3 A.M. She said she was talking crazy. After reading what everyone here is saying, it seems hopless. I can’t imagine why they don’t have a medication that would work for all of these people who are suffering. One would think that with so many people living far longer than they’ve lived before that research would be done to help with this debilitating illness. Especially since they’re predicting so many people will get it. The doc prescribed ativan but again from what I read here I don’t think it will be much help. MIL keeps exhibating very fidgety behavior. It’s like she can’t sit still. Very, very sad and it makes “us” the caregivers very nervous to watch someone twitching so much. Sometimes I think we should take the ativan :-). I just needed to vent. Thanks to anyone out there who is listening.
I am interested in this apparent connection between surgeries and dementia. In the last six years my husband has had a prostate biopsy that led to urinary retention and a catheter for a week, green light laser surgery for BPH, a hernia operation, esophageal/stomach surgery for achalasia (swallowing disorder) and a partial nephrectomy for a spot seen on a CT scan done for something else. It was only a cyst. In the last three years he has developed signs of dementia, which his MD said are alcohol-related. He quit drinking, but is getting worse with numerous panic attacks and hallucinations of strangers in the house during the evening hours. The “visitors” are after his money, so he moves his wallet from place to place and can’t remember where he put it. I applaud all of the people who are dedicated caregivers, but I hate it.
My dad’s symptoms got a lot worse after surgery. It has been our experience that the dementia is aggravated by the anesthesia and it really airs it’s toll.
I am an only child and my husband & I live with my parents because my father has Alzheimer’s. He will be fine all day. Quiet, easy going, watching TV: but around 4:00 he starts to get agitated and then the constant litany of “help me” begins. It drives the rest of us crazy! Who is the evil alien who taken possession of my father? He is like a whiny, bratty 2 year old! I find myself losing patience VERY quickly when it goes on & on & on……especially when he CAN get up by himself but is constantly asking my mother to do it. Neither my husband or I will allow this since she has had back surgery and is not strong enough to let him pull on her. We have had to resort to either my mother or me up with him all night, in addition to my husband staying up all night. The frustration level is high. I try to stay calm, but sometimes it is very difficult.
Hi, Victoria, first please excuse my English, I am not fully bilingual, I will try my best :). My Dad is 86, he has Lewy Body, which is a mix between dementia, Parkinson and hallucinations, and also he had a stroke exactly a year ago and with Sundowing extremely strong. I have no resources to put him in any nursing home or to pay anybody to take care of him. I work in a hotel as a secretary, I don’t sleep anything at all at night taking care of my “old baby” Thank God I have my husband and my kids, they help me a lot, my daughter take care of my Dad during the day so I can come to work and my son and my husband helped my at night. It is a long and very frustrated way to go. There is no medication that helped, nor the sounds of water or the light, not even trying to keep him awake all day long, actually that makes everything worst. The only thing you can do, is trying to be as calm as you can, never lose patient and always try to remember the wonderful Dad he was, also think that if the situation would be the opposite, you been the sick one, he would do the best for you, he would never leave you alone or let anybody to take care of you, at least my Dad wouldn’t. If you ever need to talk to somebody you can email me at d_barreiro@yahoo.com. Take care and I hope I could help you a little bit, we are not alone, and we are not the only ones that are turning the world upside down for our parents.
Sundowners was mentioned the last time i took my uncle to the ER but not stated concretely by a doctor. I was told that he needed to be placed into a nursing facility and he was taken from the hospital to one out of town, but i am not so sure that he is to that point yet. He first started out with severe insomnia, then he was hospitalized with critically low levels of sodium. He would become extremely active as soon as the sun would go down. He was taking ativan for anxiety attacks, which worked fine for him. My family blamed all his erratic behavior on the lack of sleep from the insomnia which no medication(about 10 different ones) seemed to help with. On the last visit to the ER he tried to put his feet into the oven to warm them up because “they were freezing” however, he knew his name, where he was at , his birthdate etc. He began to become increasingly agitated, shaking his legs and twitching his head, even high doses of ativan would not calm him down. From the beginning one of his first symptoms was constant pacing, at night he would not sit for more that 10 minutes. I went to visit him for the first time at the nursing home and it was horrible, he didn’t seem to fit in there at all because he is completely alert as a normal person. His episodes seem to happen every 9 to 12 days and in between he is somewhat manageable. Anyone else have a loved one whose symtoms are similar? If it is not sundowners and is something that can be helped with medication i would like to take him out the nursing home and bring him home. Knowing he is so alert and aware for such long periods of time makes me feel like he is suffering in a nursing home for no reason.
Hello: I have been reading all the posts trying to understand this disease/disorder. My dad is 91 years old and have been exhibiting symptoms of this Sundowner’s Syndrome for awhile but i didn’t know what it was then. I just recently learned from the neurologist that my dad is suffering from alzheimer’s. My mother passed on almost 3 and a half years ago and he’s been going downhill ever since then. My sister and I take turns caring for him and it’s my turn again. He lives with me and my husband and we both work everyday so i have a lady who comes everyday to help care for him while we’re at work. It’s getting harder and harder and I don’t want to put him in a facility if I don’t have to–actually i think that may make him worse. I’m doing the very best i can to care for him but i feel as if i’m falling short. I wish there were more that i could do to ease his suffering. I do appreciate all the comments here as it has helped me understand a little better what’s happening. Everyday around 3 or 4 my father goes to his room/bed and sleeps or just stares as if he is in another dimension. Then he gets up around 7pm (sometimes sooner) and thinks it’s the next day and wants coffee, etc. He also thinks that everyday is Sunday. He asks the same questions over and over and over again. Sometimes he’s like a 2 year-old in a candy store (wants everything). He has come out of his room in his underwear and when my husband tells him to go put on his pants -he goes back to his room and doesn’t come out as if he has been scolded. As all this was going on – I still didn’t know or understand anything about this disorder.
Hi. I’ve been reading all the posts here and I know exactly where each and everyone is coming from. It hurts my heart to say this but I’m 23 and my mother has been diagnosed with vascular dementia/Alzheimer’s since she was 51. She lost her job because she couldn’t remember how to work the new computer system. That is when we went to the doctor about her memory problems. She was then diagnosed with a thyroid goiter and thyroid cancer. She had a complete thyroidectomy. I stayed with her in the hospital then and noticed small signs of confusion and maybe sundowners. We later found out that the cause of her memory problems is mini-strokes. We have been caring for her since then and her memory has progressively deteriorated after the passing of our family dog three months ago. Within this past month she has forgotten my parents wedding anniversary even forgetting the year they were married etc. This evening has been eventful to say the least. She swears my parents aren’t even married and that I’m her daughter and not my fathers daughter. She is having frequent panic attacks and anxiety problems. We have a doctor appointment this Wednesday and I hope and pray we can prevent the inevitable for a little longer. It is putting me and my father is such a depressive and hopeless mentality I just don’t know what to do anymore. It’s just looking into her eyes and seeing the fear and confusion when she is like this it tears my heart out. Any suggestions or supportive advice?
Facing the decision of how to take care of a parent with dementia is one of the hardest things that can happen to a person. My father had to be put in a nursing home when I was only 13. Now, in Washington State there are Adult Family Homes where someone with dementia and even a couple (such as “K” mentioned above). All our resident’s families live very close by and visit daily. They are able to live in a home environment with people who care for them with love, while the family can enjoy the time with their parent when they visit. There is nothing that makes this horrible disease okay, but having this option definitely gives elderly people with dementia the dignity they deserve.
My mom lives with me and is 89 and has Sundowners and dementia. I am 60 and divorced with no siblings. She has no other relatives to care for her but me, as my son is married with small children and a career so it is just me. What keeps me sane? I have an 8 year old bijon frise dog that loves to sit in her lap and sleep. She talks continually and much of it does not make sense but she does this to the dog and the dog loves the attention. It is win-win-win for all three of us. I don’t know if it will work for you, but having that dog provide her with continual companionship is a life saver for me.
I am glad to have found this site. My husband has dementia and the sundowners hits everyday. He “wants to go home” but of course is at home. His beligerance has caused him to fall frequently as he wont let me assist etc. It is taking a toll on me but I am reluctant to find a home or hire anyone as the savings would be soon gone. He still knowa me but sees things and thinks things that don’t exist. I try to change the subjuect but that won’t work. I will look into any helps from local organizations. For the most part I am told to put him in a home. That is not an option if I am to have any resources for myself later. Thanks for all the comments. It has helped!
Don’t be so worried about keeping resources for yourself. I have been trying to keep my mother in her home as long as possible. Well, we put her in a facility two weeks ago. At the rate of this disease, your husband could outlive you. The stress is too great at times.
Since my last post my dad passed away. It was a blessing. In the end, he could no longer swallow but would tell us he was hungry. I would put his spoon with food to his nose or put the pureed food on his lips to satisfy him. A nurse scolded me for doing so as he “might choke.” She was clueless. The smell saisfied him! So what if he choked – he was dying & wanted food. There is something intrinsicly wrong with conventional medicine. A feeding tube would have been painful for dad. He wasn’t in pain & no way would I put him through it. He is so much better off now! A Dr. ordered a feeding tube & when I found out I couldn’t believe it. He was 95 yrs old. His last 3 weeks were spent in hospitals & a nursing home. Even with 24 hour home care, one person could not manage him alone. He no longer realized he was home any ways. I guess I just want to say that I continue to pray for you all that you find the strength to deal & care for your loved one and yourself! In the end, no medication really helped dad. It was just his time and way to go. I miss him but am also enjoying long overdue leisure. My prayer is that all of you be at peace with leisure time to care more for yourself.
My dad fell on January 1, 2012. He is 78 years old. He severed the quadracep tendon in his left leg and had surgery to repair it on the 13th. Prior to his fall, he had some “normal” forgetfulness and confusion for a 78 year old man. But prior to the surgery, just 13 days later, he was more and more confused. After his surgery, he became extremely confused, had halusinations and would get extremely beligerant. This behavior was as far from what my dad is normally like as it could be. He’s been in a rehab facility since January 17th. He needs physical therapy for the leg. His mind is better during the day. In the past week he has probably gotten to be at leas 90% himself. But between 5:30 – 6:30 pm…..he goes crazy. This doesn’t happen every night but more than not. He gets very strong, sees things that are just not there, believes things are true when they never happened and I feel sure could hurt someone if he had the chance. The nurse administrator told my brother yesterday that they feel sure he has sundowners. The worst news we could hear. My dad had a brother that developed sundowners after two major surgeries close together. My dad has told me many, many times that he sure hope he would never end up like his brother. And here he is. How do you take him home if he could be dangerous to himself or my mom? But how do you leave him in a nursing hom when is mind is great during the day? My brother, mother and I are rotating the care during the day. My brother usually stays every night until dad is asleep. The better dad gets during the day, the more he wants to go home. His therapy is going real good and physically, he could probably go him in a couple weeks. We feel we owe him the chance to go home and see if that will help him. Everytime he gets an attach of sundowners, he is begging to go home. So we’re thinking if we take him home and he can be with his dog and back in his own bed, maybe it will lessen the attacks. We’re scared he will hurt himself or our mom. My brother and I have decided when he does go home we will stay nights for a while. But we both work and I live about 70 miles away. We can not afford to hire anyone to stay with them. But I can’t stand the thought of putting him in a home. We are trusting the Lord to lead us and direct us in his care. But we would sure appreciate your prayers and any advice you may have!
Thanks and God Bless us all!!!
My grandmother is 88 and I’ve been caring for her for the past 4 years in her home where she has lived for 53 years. She was diagnosed with Dementia just before I moved in to help her, but I saw evidence of it many years before (she would do things backwards). My mom and aunt died of cancer about 15 years ago. I’m 43. Fortunately grandma has financial resources and one son who lives out of state. Her son has wanted to place her in a facility since diagnosis but is very willing to let me do what I can to keep her at home. I made a promise to grandma (I will NEVER make another promise as long as I live!) when I was about 17 that I would make sure she stayed at home and never went into a facility. I may not be able to keep that promise. Grandma is still ambulatory and relatively self-sufficient with assistance (knock on wood) but Sundowners has just begun over the past few months. It started with, “when is someone coming to pick me up to take me home” and variations of that on a regular basis around 7-10pm. I have seen her standing at my door or in the middle of the room, not saying a word, and waiting for me to acknowledge her. It really scares me. I told her one time that it scared me and she said that if it scared me how did I think it made her feel. Wow. She isn’t usually with it enough to come up with that. Made me think. I have to say after reading several sites I am lucky in some respects; she goes to bed around 8pm-10pm and I wake her up by 9am. She usually sleeps through the night but we have some nights of pacing the house and standing at my door, or her usual rummaging through her drawers at all hours of the night. I was having a lot of trouble with her wanting to go to bed the moment the sun went down so her son told me to let her go to bed when she wanted. I tried that but she would wake up during the night and keep me up. Now I let her go to bed at 6pm where she watches an old movie until 8pm or so. So far it seems to be working but who knows how long it will last, as I can continuously see changes in her functioning/behavior. Before she goes to sleep I tell her that she is home, in her own room and in her own bed, and most of the time it works. If I forget to tell her she walks down the hall to ask when someone is coming to take her home. I don’t know how it works because she doesn’t remember anything. Maybe on some level things with an emotional component sink in.
She has had mini strokes in the past and has vascular issues and is on multiple meds including Coumadin. Personally I think the medication is what caused the strokes and subsequent Dementia. She has had A LOT of complications from her medicine, including fainting spells from her Aricept, which I finally took her off of. It seems everyone knows that Aricept can cause fainting except the doctors and the hospitals even though it’s listed as a side effect. Thank God for the internet. I know her condition will deteriorate even more and I’ve already warned her I may not be able to keep my promise. I’m already tired. I feel I’ve sacrificed so much already, as I have no life whatsoever. I’ve given up almost everything. I know I don’t have it as hard as many people so I guess I should be grateful. I feel resentful sometimes, very sad, scared that it may happen to me and I have no one to care for me, depressed, a lack of motivation and am apathetic about most things in life right now. Grandma was there for me when I ran away from an abusive home at age 17 and she let me live with her until I graduated high school and left for college. I feel I need to be there for her but am not sure at what personal sacrifice. I’m also caring for a 22-year-old cat with kidney disease whom I’ve had since college. It seems a bit overwhelming at times and then I feel selfish and guilty, especially after reading other people’s stories. I’ve never felt guilt before in my life, I always try to do what I feel is right. Now I live with it daily.
I do think diet plays a role in her functioning, I know she does better when her emotional needs are met, lots of attention, kindness, music from her era, dancing, old movies, photo albums, and picture books (she likes Norman Rockwell art). She also reviews the family geneology booklet EVERY night and sleeps with the booklet and her purse by her side.
I’ve tried some alternative methods of healing and now I’m trying deer antler velvet. I do believe the body has the capacity to heal itself if given the proper tools. I think it will not be possible as long as she’s on multiple meds, and her dr’s are adamant about keeping her medicated. I have read that b vitamins, especially b-12, help with Dementia but I’ve also read that seniors don’t absorb it well. Doesn’t seem to do anything. I tried Lecithin and fish oil. Lecithin doesn’t seem to do much alone but the fish oil helps and maybe both help in combination with each other. She has a mouthful of mercury fillings, drank tap water for years filled with flouride, and used aluminum pans. She was an alcoholic for years and never drank water. Dehydration can cause all sorts of brain malfunctions. I wish I could find a solution. I feel the health care and pharmaceutical industry make too much money on this problem, just like cancer, and there’s more money without a resolution so I don’t ever expect them to find one. Maybe it’s those vaccinations…they cause autism in children, why not Dementia in the elderly? Flu shot anyone?
I’m not sure of the purpose of writing this and I apologize for it being so long. My friends don’t want to hear it anymore. I thought it might make me feel better to write it but it doesn’t. It did help me to read other stories and I identified with many so maybe this will be of help to someone else. Thanks everyone for your contributions.
Thank you for your information. I have my parents here Mom has dementia, has had it for about 20 years…now Sundowners has started and it’s horrible. She screams at my Dad to take her home,even though for 3 months now we have told her they are living with me until we can get them cleared for assisted living apts. She forgets everything, we finally wrote a letter to her with all the answers to her questions and make her read and initial it everytime. She is taking Namenda and citalapram, I don’t know if they help. She has had many TIA’s, high blood pressure for years, never has had a drink in her life. Lived a healthy, clean life, never been overweight or smoked. She is 85 and it is so sad to see her like this.
Thank you for your notes, it makes me not feel alone
My Mom is the same way several strokes, tons of TIAs and high blood pressure. Its so hard to see her forgetting, yelling and staying up all night at times. My prayers are with you and your family. I elected to keep my mom at home with me its hard but something I have to do. I find myself in bed at night crying its jst sooo sad…She is 80.
Wow. What has happened since you wrote this? How are you? You didn’t need to apologize for being so “long.” I was completely absorbed in your story, and concerned about your health. I’m reading this because my 91-year-old mother was recently diagnosed with AD after a couple of falls, is currently in rehab and experiencing Sundowners. I once told her I’d take care of her in old age, but I didn’t realize (or even know about AD) how bad things would be. Though she’d love nothing better than to go home (bearing in mind that she sometimes thinks she’s home [so how much it matters is debatable, perhaps], we’re thinking long-term “nursing home” is the best solution for everyone. My father is deceased, so we have decided to spend the money she has on a nicer nursing home, while she still is somewhat aware of her surroundings (she’s probably in mid-stage of the disease), and then to put her in a Medicaid-pay facility. She needs 24-hour care and my sister (67 and unhealthy) and I (59, with spinal issues and fibromyalgia) can’t even handle her alone, even if we could handle the constant emotional strain. We are there with her, with help from a friend and, starting tonight, a sitter, all day and until she goes to bed. At the nursing home, she gets lots of visitors (who wouldn’t/didn’t otherwise visit as often) and we have some time to handle her affairs and our own.
I appreciate your suggestion about the old-time reminiscing. I bring a boom box with me and we listen to her CDs. Sometimes we bring them to the dining room to share with other patients. The first day we tried this, everyone joined in singing Christmas carols (in May). Last night, we brought it onto the patio and listened. She sang along with the gospel hymns. At a nursing home, we also have the help we need with bathing, don’t have to worry about providing food or cleaning her. At night, we sing hymns and talk.
When the Sundowners kicks in or she isn’t able to find the right words or can’t do something for herself, I reassure her and soothe her. Because she is in a facility, I don’t need to be there while she’s sleeping and have the mornings to take care of some things and rest. If you don’t take care of yourself, you will likely develop debilitating illness, yourself. I’m sure you have a lot to contribute, given your caring nature, your fairly-young age, and your experience with your grandmother’s disease, not to mention any other gifts you have to share.
You’re too young to give up your life. She has dementia–something you never anticipated when you promised to keep her at home. If she doesn’t have money, she can go on Medicaid. You might even be able to keep some of her assets for yourself–if you are her heir–with the help of an attorney. If you’re not her heir, you should be, in my opinion, for the sacrifice you’ve made. Her son should see to it that you receive something to make life easier for you as a result of your sacrifice, even though you never wanted compensation when you volunteered to do this for her. Whether or not you receive any monetary reward, you will have the reward of having done this for her and shared so much with her. But, enough is enough, or so it seems to me. I believe you should be practical about this. Let her son step up to the plate to handle this now. It’s time. You could look for a place where you could still spend time with her, perhaps.
I think you wrote what you wrote to be helpful to others and, perhaps, to ask for help. Help is what I’m trying to give. I hope it does help.
Your post reminded me of how I’m feeling and what i’m going through. I can tell you’re a very caring person the way you describe your relationship to your grandmother. I like how you are searching for alternative ways to treat your grandmother’s illness. I feel the same confusion as you do in relation to my mother who has Sundowner’s syndrome and dementia. I promised her I would not put her in an assisted living facility as long as I could. But, I like you mentioned in regard to your grandmother, I feel I’m sacrificing my whole life to care for my mother. She has done a lot for me in my life so i feel I owe her my help. But, caring for my mom, as she continues to decline, has started to ruin my health both physically and emotionally. You seem to have mixed feelings about caring for your grandmother just like I have mixed feelings about caring for my mother. It is a lonely, depressing, debilitating job. I know. I just wanted tell that you’re not alone in your struggle.
I have learned SO MUCH reading your stories today. I didnt know what my Mom had, with her Alzheimers, that has kept her up ALL night for days now. (Im in a state of EXAUSTION! Its Sundowners. I have Fibromyalgia, COPD, crohns, Spincter of Oddi dysfuntion, cfs, and other health problems. I am the only 24/7 caregiver for my Mom. I have NO HELP. My Mom has lived with me for a year, and 1/2 now nearly. She is very appreciative, of what I do. There were times when I first had to move her in with me, that she got violent. She is now on Haloperadol, and that helps her stay calmer. My biggest problem is lack of sleep, for her, and me. I am trying Melatonin, and at times it seems to help. Its Spring Valley 10mlg. I feel for ALL of you. No matter what we do, this is NOT easy to deal with. I have loved my Moms stories from years ago. But she cannot remember, 2 minutes ago. I pray for ALL of us, for some new help, in the drug world, for this part of Alzheimers, and dementia.
I finally got 13 1/2 hours sleep. I showed my Mom the time when she woke me up 2 times last night. I also saved the Melatonin for the middle of the night. Instead of giving it to her at bedtime. IT WORKED! Thanks be to GOD! I feel like can actually manage this now. I thank Steve the Webmaster, for his nice email. He gave me encouragement to fight again. I hope in posting this it may help someone else. I feel like I can cope, if I figure out some solutions to this Sundowners Syndrome.
Hi,
I haven’t read these posts since my last entry so I’ve forgotten what has been said. Granny had 2 weeks of serious Sundowner’s and barely slept at all. Then it just stopped. The doctor is checking to make sure she doesn’t have a UTI. I’m sure her sleep disruption will occur again. My neighbor sent me an article on fish oils and coconut oils alleviating symptoms of Dementia. Granny did do much better when I gave her Omega 3,6,9 fish oils (do not use junk from a non-health food store) from a reputable health store like Whole Foods. I tried the coconut oil but only a few times. Some have had lots of luck with it. Get organic, unrefined, cold-pressed, coconut oil if you try it. You can look on Amazon if you can’t leave the house. I’m going to start both again tomorrow.
I went to a board and care today to inquire about placement and mentioned that my grandmother had been an alcoholic. She said that every single client she had with Dementia had also been alcoholic. Coincidental?
Granny is no longer able to identify herself in the mirror and now has a new companion that she talks to day and night. It has been good and bad. She also argues with “her” and reports that “the lady” is following her around or won’t let her use the bathroom. She got mad at me twice because I wouldn’t make “that lady” leave. Fun stuff. The doctor wanted to put her on an anti-psychotic which was for hallucinations. She is not hallucinating, she just cannot comprehend that it’s her reflection she is seeing. When I looked up his recommendation, there are lawsuits galore and the pharmaceutical company KNOWS it does nothing for people with Dementia. Zyprexa was the name. All of the anti-psychotics can cause DEATH in patients with Dementia. Please do your homework before listening to the doctors who just want to drug our loved ones. The doctors are now walking pharmaceutical sales reps who get kickbacks for addicting the elderly (legal drug pushers).
For those of us with adrenal exhaustion (aka adrenal insufficiency, adrenal fatigue), I’ve found Standard Process supplements nourish the adrenals and give extra energy. Without them I can barely wake up in the morning; I feel like I’ve been hit by a truck. You can buy some of them on Amazon or through many chiropractors. I use Drenamin and Adrenal Complex. For me it makes a world of difference. All of us with constant, long-term stress probably have this. In order to take care of others, we must take care of ourselves first. It’s better for everyone in the long run. It’s also easier said than done.
Thank you for your post. I will talk to her Dr. about this.
Dawn you are so right about the anti-psychotic. We put our mom in the hospital for observation to find out exactly what was happening with her and that’s when we found out she has Vascular Dementia and had many TIAs and suffers from Sundowners Syndrone. When she was released from the hospital we were given a couple of new prescriptions and on blind faith we had them filled but one of them we should never have given her (Zyprexa). We gave this to my mother 2-days and she told us she was feeling so bad and she could hardly dress herself or hold her head up and that she was praying to God to help her because she has never felt like this. I got worried read the side effects and one was DEATH for Dementia patients. The next day a Home Health Services stopped in to check on mother and whenservices found out that she was not home bound, and that she would be going back to the Senior Citizens Center the following week, she said she could not even take her blood pressure, but would tell us this, whatever we do make sure we did not miss giving mother the Zyprexia. Wouldn’t you know this drug would definitely render our mother home bound and that would in turn secure a job for Home Health Services. They are all in this together. They just want the money at the expense of your loved ones health. What family member would give their loved one a deadly drug and know it. Thank God we read the side effects and I wrote a letter for all my family member with all my research material and one of my siblings, without thinking let my mother’s family doctor read my finding and he almost withdrew from being her doctor, but he was NOT the doctor who prescribed the medication. Like I said they are all in this together and for some its all about lining their pockets. I also read that a highly absorbable form of magnesium protects the delicate brain synapses (neurons). Go to this website address: http://www.lef.org/magazine/mag2012/jan2012_Reversing-Brain-Decay_01.htm.
We love our mother and are trying to do everything we can to help her. Life is precious and we must protect it.
My husband, age 75, was recently diagnosed with bone cancer. His vertabrae are crushing and causing severe pain so they put him on methadone. Since then his dementia has increased with nights of agitation and aggression. He talks to imaginary people all night and continually tries to leave the house. His father had Sundowners during his final months. Does anyone know if this can be hereditary? I am his sole caregiver and have no help at all. Everyone says to let me know if I can do anything, but when you ask for help specifically, there’s always some reason why they cannot do that or that it isn’t convenient for them right now.
Sundowners can be triggered by medication. Try something different for pain. My mother’s doctor has taken her off the Tramadol. She only gets Tylenol for pain. I know someone whose grandmother got so crazy (Sundowners symptoms) on pain medication that she actually had knee surgery with nothing more for pain than Tylenol.
Dementia can be heridetary, but not necessarily. Don’t know about the Sundowners being hereditary, but when Mom got it upon being hospitalized for a fall (during which time she was diagnosed with Alzheimer’s), I looked up Sundowners on the Internet only to find that she was facing the five factors that seem to cause it or make it worse. Let’s see, what were they? Dementia, institutional setting, multiple medications, age and urinary tract infaction.
I have read most of these posts and everyone’s situation seems to be different while dealing with a loved one inflicted with Sundowners Syndrome. The common thread, though, is that most are miserable with this disease and there are no solutions that really work. As I deal with this in my father, I pray everyday that the Lord takes him. He is so very miserable, in a skilled living facility where the caregivers are doing the best that they can do under the circumstances. After reading about the treatments, the information points to behavior types of solutions. What a joke. Bottom line, no one really knows how to take care of it and are grasping at straws for solutions.
I remember a “King of Queens” episode where Jerry Stiller hears his daughter talking about getting healthier and eating better. He pipes in and says – “In my day, we had a massive coronary at 55, died, and we liked it!!” What is the obsession about living longer – especially when quality of life is diminished? Sundowners in the elderly dementia patient is not quality of life. It is time to re-evaluate living a long life, especially when that longevity is dependent upon pharmaceuticals and in the meantime putting a strain on healthcare and the finances of the elderly.
Hi all
I am from Nottingham, England and I can totally empathise with all of you. My dad has had Alzheimers and vascular dementia now for 10 years and has recently developed the Sundowners syndrome. Every night is incredibly stressful, partly because no-one can sleep and partly because I hate to see him so confused and agitated.
Our community nurses (who are both fantastic) have suggested a mild sleeping sedative that also helps with depression but has no morning (hangover) effect. I can’t recall what it is called but I think it began with an E. Once we have tried that for a while I will let you know how we get on. I know how fortunate we are that we have a national health system and I thank god for it every day.
Myself and my son (13 yrs old) have moved in with my mum and dad to help as they are both in their seventies and she cannot cope alone. They celebrate their 50th wedding anniversary on July 7th so they can count themselves lucky they have had so many happy and healthy years together but this disease is so overwhelming and so cruel that at the end of his life I worry that all we will remember about him is the disease and the ghost of the fantastic husband, father and grandparent.
Re: “Our community nurses (who are both fantastic) have suggested a mild sleeping sedative that also helps with depression but has no morning (hangover) effect. I can’t recall what it is called but I think it began with an E.”
I was wondering if the sedative worked, even a little. If so, I would be very interested in the name and hearing more about your experience. Thanks!
Mom has had alzheimer’s for 12 years now. My husband, my son and I take care of her in our home with the help of a caregiver who is a godsend. Mom experiences severe sundowner syndrome which seems to start at 4:00 pm. like clockwork each evening. She packs her things and tells us she is going home. Draws the curtains and is generally agitated. She walks back and forth from her room to ours to tell us she’s going home. This tires her out too. We give her Trazodone to calm her down at 4:00 p.m.. It works very well. Distracting her with activities such as helping me with dinner, crocheting, etc. helps too. Trazodone takes about 2-3 hours to take affect and then she goes to her room and goes to sleep. This is a heartwrenching disease and I feel for all of you out there. Hope they find a cure soon. No one deserves this!
We had to move our 78 years old mother from Pensacola, FL to Dothan, AL because she thought people were renting out rooms in her house (which this was not the case) and she moved from her master bedroom to one of her front bedroom to keep an eye on what was happening. She started withdrawing all her money from the bank because she thought they were stealing from her, then she started hiding things from herself in the house and saying someelse was doing.
We put her in hospital for a few days and come to find out she has numerous mini strokes and now suffers from Vascular Dementia and Sundowner Syndrome. This disease is so confusing and difficult for us. It only two daughters myself and my sister who are mother’s caregivers and we both have to work. We got her involved with one of the local Senior Center and she would 3-4 a weeks but abruptly stopped two months ago, now she sits at home everyday. For the most part she does ok during the early part of the day, she clear, she reads constantly, watches tv, talks on the phone, all normal activities but then she flips. Anywhere from 1000-1200 she starts packing saying she’s got to get out of here and go home. We try not worry too much about her walking away too far because she has osteoporasis and our neighbors look out for her too. She’s had been living in AL now for 17 months and she thinks she only been here for a couple days or sometimes a couple of weeks. She wants to go home to her mother and father (who have long been deceased) but she does not remember, and will say if my momma is dead, ‘why is all of her clothes still her?” It is so sad to see our mother like this. We are on an emotionally rollercoaster. And in addition, me and my sister works and to complicate it even further, I live 30 miles away from them. We are in desperate need of assistance. We are hoping there is help to provide some relief for the caregivers. Maybe some adult services for dementia patients. Does Hospice sit with dementia patients free of charge or for a minimal charge? Please someone help us!
Like all of you, I’m dealing with a parent with sundowner’s. And like many of the people described he also had a couple surgeries / pain incidents that resulted in increased confusion afterward. I would be very interested to know how many of the elderly described here were given VICODIN or OXYCODONE after surgery or pain diagnosis? I’ve become very suspicious of their role in the permanent increased confusion.
Hi. Here’s my update (I didn’t read my previous comment so please forgive me if I’ve repeated myself): Grandma got so crazy with the Sundowner’s I just couldn’t handle it anymore. If she asked me one more time when someone was coming to pick her up to take her home I was afraid I was going to hurt her or myself. I felt borderline suicidal and had a visual migraine for the first time in my life (lost my vision for 20 minutes) due to the stress. That was when I decided I HAD to place her in a board and care. I picked out the absolute best one I could find, $4000 per month and beautiful with everything her previous home had and more, and moved her in on June 12, 2012. I’d love to tell everyone that it worked out great, but it hasn’t. There is no end to the distress. I was just starting to get my life together and there was an undisclosed and unexplained incident at the board and care. I THINK another resident restrained her from exiting the front door when all she wanted to do was sit outside like we used to do all day. They won’t let her. They plop her in front of the tv all day, don’t talk to her, no activities (one per month), and she doesn’t even like the programming on tv. She only leaves the house for doctor’s appointments or when I pick her up. She tells me she is bored, has nothing to do all day, and is not allowed to go outside when she wants to. Yes, they care for her, feed her, take her for walks, give her her medication, treat her nicely. She is not as happy as being at home, with family, and I’ve seen her condition spiral downwards fast. Yesterday I authorized Seroquel for her non-stop pacing, talking to herself incessantly, and talking to “the lady in the mirror” (herself). I already see a difference. I gave in to the anti-psychotic otherwise she would end up in a locked facility with less care. The owner of the board and care said it worked wonders for his other residents with the same issues. She appears more mellow. Full effects take place in 3 weeks. We’ll see. It’s too soon to know. I purposely didn’t research it because then I would say no, and then she would be given a 30-day-notice for their inability to handle her. I couldn’t handle her the way she is now. I hope she passes soon because this only gets worse and I just don’t see the quality of life anymore. We all need to be careful it doesn’t happen to us. I’ve just started reading a book called Gut and Psychology Syndrome, there are about 97 reviews on Amazon, and it gives one perspective on the proper way to eat to avoid problems like this. Here is something I found for everyone on this site that is FREE and DOES WORK, look it up all over the internet: EFT (Emotional Freedom Technique). Here is the free tutorial: http://www.garythink.com/eft/eft-tutorial.html. It’s for all of us with stress/emotional issues and a way to quickly relieve it. I know it sounds different but I have used it to get rid of panic attacks and another personal issue. I am using it daily now for the stress related to the placement. If it helps just one person out there then it’s worth mentioning.
Carol: My grandmother was on Vicodin for a long time for issues related to her teeth and back pain. The MOMENT I took over her care it went into the trash and no medicine was given for pain. I gave a homeopathic ointment for pain (Arnica) and gave her sufficient water which took away all sorts of ailments. She rarely complained about pain. I do believe medication in general is a contributing factor to all illnesses. I refuse to take any myself. Diet, insufficient water intake, alcohol abuse and medication is how grandma ended up where she is. That’s my theory. This should be a wake up call to all of us. Do we want to end up like this? Put me to sleep now if that’s my destiny.
Vanessa, I had to give in to the medication. I’m assuming you will at some point as well. Do your research, and more importantly, observe side effects. You determine the trade off. You know your mom better than anyone else.
I wish everyone luck, this is the absolute hardest thing to deal with because it is ongoing, and just gets worse. Where’s the finish line? I thought I passed it.
I just HAD to add that I took granny to her hearing aid appointment today (just bought two brand new hearing aids 2 weeks ago) and one hearing aid battery was dead (they must not be opening the battery door at night) and the other was turned off. No one caught it. Why? Don’t they talk to her enough to determine that she cannot hear? Money well spent. That’s the kind of care you get in the best board and care facility available (no, you can actually pay $6500 per month). If you place your loved one, you must check on them daily.
Dawn, I wish I had the funds for my mother to go to such a nice faciltiy, however, since I do not we will continue monitoring her and get her back on seroquel or namenda. Thanks for all your suggestions, it is really helps a lot and I pass it on to my sister. Thanks again.
Vanessa,
I did not have the funds for that either. Fortunately, granny had some money saved for just that (I almost think she new she was declining and made preparations) and we had to rent out her house as well. She would have done better at home, I just had nothing left to give. I was never able to find free services but did learn that Medi-Care would (not sure now with the changes as a result of the new health care law implementation) cover a bath nurse if needed and Home Health/physical therapy is covered under Medi-Care if needed after a hospital visit but that never did me any good (no companion care). Maybe someone should create a website with screened volunteers to help out families with needs such as this. This is a perfect opportunity for someone to come up with a business idea to satisfy a growing need.
My point about the board and care may have been that there may be no better care than the family member will receive at home, or that placement is not necessarily a complete relief, as I thought it would have been. The “burden” is still present. I don’t think there is a perfect solution, and the entire problem is a lose lose until it’s over no matter how it works out.
There is such a thing as respite care. You can take your loved one to a placement temporarily for a break. Yes, it does cost money but it is possible. We also have something here (in L.A.) called IHSS, In-Home Supportive Services, and if the Dementia patient is qualified (financially) will receive money for care. It can be compensation for a family member or someone outside of the family. It is income-based. It is available if there are assets but be careful because they can attach a lien to a home if they have one. For low income and no property, the cost is covered by taxpayers. I’m in L.A. County and EVERYTHING here is free for low income people, and the biggest beneficiaries are the illegal immigrants because they come here with nothing. (Yes, they are qualified for free EVERYTHING including money, care, food, medical care, baby food and necessities, low income housing and utilities, cell phones, etc…) I don’t know how it works elsewhere. My point is there are free services out there that most Americans don’t know about. There are also free day care programs (for which I would have had to pay $100 for half a day for granny but others receive free covered by Medi-Cal (different than Medi-Care)). You can find out about services through a social worker at a hospital or government entity, internet research, your loved one’s insurance company, Medi-Care or your local welfare office. Don’t forget other things that can help out financially, like low income utilities for your loved one…and that’s a reduction on ALL utilities including water, electricity, gas and phone. There’s also a reverse mortgage if that’s something that works for some families to free up money for care, just know what you are getting into and that the house may become bank-owned after. I previously worked as a social worker and was taught what services were available by the illegal immigrants. They know more about what’s available than we do. Ask them. You can hire a caregiver privately but make sure they have a background clearance and screen them very carefully. This sometimes invites a whole host of other problems if the person is not carefully screened. Here we have TONS of home care agencies that have screened caregivers, it’s just a little expensive because they have to carry insurance and worker’s comp., so it’s about $17 per hour. Privately you can pay $10 or less per hour. I forgot to reveal the resource I used for granny: A Place For Mom. They find solutions for all income brackets and are nationwide and growing. They help find caregivers (agencies) and placement options. Check out their website. There is no fee for you or the elderly client (they make money from the businesses). Just remember this is a business to make money, it is not a non-profit organization and they do not screen their recommendations. The care placement options are licensed. Do your homework. I dealt with one specific person that I liked from this agency, the other two were only after the money and were trying to make me feel bad that I couldn’t place granny in a facility that charged $8,000 per month. I emailed the person with whom I worked with the hope that I can give out his direct phone number. If so, I will include it later. I expect him to respond quickly; he is that responsive, he cares, and he works with the income situation. He can make some people qualify for placement that only receive SSI (around $850 per month). In the meantime, maybe someone else has suggestions of other possibilities that exist, just for back-up options. You may feel some relief just knowing that options exist. I thought I left some of the above info on this site before, so please forgive if it’s a repeat. Living with granny and her Dementia for so long and under constant stress I fear my memory is not the same as it was before:(
I feel for every one reading these posts. You are not alone. We can collectively suffer together, or better yet, support each other through these trying times. We must be strong people to do what we are doing. Not everyone would step up to the plate. We will be thankful later we did the best we could under such trying circumstances. The best we could means the absolute best we can AT THE TIME. Could I have done better? Looking back, maybe. At the time, no. The one thing I will admit is that I DID have some options available I didn’t utilize for my own reasons, and that would have made a difference in how much I suffered.
Dawn, thanks for all the information, its much more than I ever knew and I am definitely going to look into what you have shared. Bless you and keep doing what you do.
I did talk to the person at A Place For Mom but he says each state has it’s own benefits and restrictions and it’s best to just call the toll free phone number on the website so you are transferred to someone who knows the ins and outs of where you are located and provide you with options based upon your specific needs. Sometimes they are unable to help but may be able to provide a list of resources for you. I’ve only used them once but a neighbor who had a very low income relative used them as well and he and that relative are happy with the placement.
Another tip from someone else: if you are looking for a placement and cannot find one due to income status, if your loved one goes into the hospital the social worker at the hospital is REQUIRED to find an appropriate placement regardless of income. They will insist you pick up your relative, but if you insist you are unable to care for them and have no affordable placement options they will be obligated to find one, and they have more resources than you will ever have. I’m not saying abandon your relative, but the opportunity for placement resources will not get better and if you are desperate this may be your only chance for assistance.
Thanks Dawn.
Sorry for taking up more space, but I found something. I cannot attest to it but apparently over 500 people can. On Amazon I found a book: The Healing Code: 6 minutes to heal…by Alexander Lloyd. It is $15.11 on Amazon now (sale) and available at libraries for free. People say it has transformed their lives (physical and emotional stuff). I ordered it and will receive it tomorrow. It is similar to EFT as recommended above but apparently even more effective and even quicker. We all need help dealing with our stressors, depression, whatever else almost all of us have. ANY help we can get is better than nothing, that’s why I came to this site. Just check out the reviews and see if they have it at the library. Perhaps the information is available for free online, I didn’t check. Keep an open mind and leave all doors open. Something has to change and it’s not going to happen unless we change something. We can try this on ourselves and why not on our loved ones with Dementia? I’m going to keep reading reviews to see if it’s been tried. I’ll try ANYTHING at this point to see if I can make life better for my grandma and for myself. It’s not going to cure her Dementia/Sundowners, but if I can make it a little better for both of us I will. If anyone finds success with this please let everyone know.
I had also heard that coconut oil (unrefined, organic) helps with Dementia but I didn’t have success with it. I didn’t stick with it that long though. I don’t know how to control Sundowners but Triple Leaf Relaxing Tea and Natural Calm (magnesium/electrolytes) help with relaxation. Magnesium is a natural tranquilizer. I also used Lentra by Sanesco to alleviate anxiety and stress for myself. It’s hard to find online.
Dawn, have you read/reviewed the book, The Healing Code: 6 minutes to heal….by Alexander Lloyd? If you post a review what would it say? Is it a helpful book? Hope all is well as can be. Take care.
Hi Vanessa,
I DID read the book and very much agreed with everything contained within. I must admit I have not applied the technique, as simple as it is, as often as it’s suppose to be done, so I cannot attest to it’s effectiveness at this time. I also did not try it on granny yet, as I have myself and my cat to work on as well. I do believe the EFT would be best for people on this site, as it works quickly to relieve stress, anger, depression, and any other negative emotion with very little effort. The Healing Code, related to this site, would be most beneficial for those who have issues related to the family members they are caring for from childhood (verbal, emotional, physical abuse, etc…), but it also removes subconscious barriers that contribute to increased stress in life. The book acknowledges that prolonged STRESS is the contributing factor to ALL illness (those caring for people need to consider this as well). There’s situational stress (people trying to juggle caring for a loved one with Dementia or working a job they hate or both), and there’s underlying, unknown stress based on stored “beliefs” about ourselves that we established when we were young, all of which “programmed” us and we respond to accordingly (that would include the belief that we should be able to care for our loved one with Sundowner’s when perhaps we shouldn’t or can’t any longer, or the guilt involved with placing the family member, etc…). The technique eliminates the stored stressors and allows us to respond differently to current circumstances. It’s hard for me to explain, I’m really not good at it. After reading the book, though, I relinquished the guilt of placing grandma in a residential board and care, knowing it was the best for both of us. I know now it was the right thing to do. She is doing better in many respects. She is also doing better with the Seroquil.
One thing I’ve read which is crucial for Dementia patients (for everyone really):
Do not give them refined carbs and refined, processed sugar/foods. I have done tons of research since placing her and it appears I exacerbated her symptoms significantly by giving her all of her favorite foods like ice cream, grilled cheese sandwiches, cheese enchiladas, etc… I realized this when I saw improvement in some areas of her condition after placement. Try it for a few weeks/months to see if there isn’t a difference in the behavior.
In my posting earlier this afternoon, I failed to add the persons who may receive VA assistance INCLUDE not only son, daughter, spouse, and self, but ALSO INCLUDES YOUR PARENTS.
Excuse please my misspellings. My 1-1/2 eyes are not the best to use when I do one finger typing.
Doc (Donald E. Wuerz, Aurora, Colorado)
Here is my original submission.
Donald, Thank you for your comments. I would also mention that FL has county offices specifically tasked with helping Vets and families to obtain such benefits–and I know many other states do as well. These are government entities, not services or someone trying to sell you other products. They basically help you navigate the process–because as you mentioned, it can take a lot of persistence at times with the VA and if you don’t dot your i’s correctly, you might be rejected. I heard one FL government administrator once say she first thought this was an odd thing–that one branch of govt. would have offices/staff to help citizens navigate another. But, when she saw the stats of how many people they helped…and thus how much $ it brought in to the county (potentially reducing strain on other programs), she was all for it.
Here’s the link for the ones in our county: http://www.pinellascounty.org/veterans/locations.htm. Check with your local govt. to see if there’s something like this. Our care managers and clients have worked with them often over the years and have really seen their value.
I am so glad I found this website. It is so good for me to know I am not alone and to listen to your despair and love for your loved ones. Thank you for all your comments. It is not easy. I want sleep. We are trying different things but so far no luck. Mom started ativan and remeron last week, maybe that will help. Need to figure out how to keep her in bed or to wake up when she gets up. any suggestions??? Am thinking about a bed alarm and a baby monitor.
I have just found this site. I am very thankful for it. I am caring or at least really trying to, for an 87 year old man. I am not related but have known him for ten plus years from his seasonal working and volunteering at our work site. He has a son that is not able to care for him and no relatives able to help. We live rural and have very limited medical care with the closest 40 miles over sometimes impassable roads. His son had him admitted to a hospital (V.A.)2 years ago after finding out he was spending lots of money and not remembering it (this was in winter when he was in different (warmer) state. At work the previous summers we just had adjusted to his forgetfulness and at that time were not around him in the evenings and did not see the other side of him that was emerging at night. The V.A. hospital kept him really doped up and bed-ridden. This was 1500 miles away from his summer job with us that he had volunteered at for 20 plus years. We had grown to love and highly respect him. Weird story short, the boss after multiple calls from him pleading to get him out of that “prison” talked his son into releasing him to our care. This has turned into my care. I had never been around anyone with Alzheimer (what he was diagnosed with) The good days and roller coaster of lost and forgetful bad days have increased with the addition of at night thinking it is day and constantly walking out no matter the weather to go to work. He gets upset at me telling him it is night and I tell him in military time (he is retired Air Force) then often l have found out he still leaves later. He is housed in a motel room as we were forced to no longer let him be in staff housing. I am worrying over him and the many “odd” things he does.. won’t recognize food enough to eat it if covered, hiding soiled (urine and feces)clothes, using towels to wipe not the tissue. It s like if things are not immediately visible he is not able to comprehend it to eat, dress for night -day or what to wear for being ok ie; hot weather cold not to wear his historic clothing 24- 7 etc. I have been considering moving him into my home to help care for him ( small mobile in country with livestock) or a travel trailer next to my home. My boss is encouraging this. I think perhaps this night time behavior that is so different than his good days has been witnessed repeatedly along with the times I have searched for him or been called to come down as he was seen leaving or went into a different room and was sleeping in that bed. He than feels bad or is depressed after some of these times I think, but he cannot verbalize hardly if at all when something is bothering him. Recently I contacted other relatives who were definite that they could not take him and did not want him in an assisted living near them as the responsibility of that they said was too much. They are all out of state. There sadly is no assisted living anywhere in a 100 mile range around here. I hate the thought of him going back to the drugged out situation he was in. When he got here from the V.A.he was out of it and angry and depressed. With the approval of a physician we lowered dosages and added very good essential oil vitamins and D3 and E. He is the sweetest person except the increasing night issues. I put big signs on his door to STAY Here It Is Night Time and it helped until he sometimes is removing them and declaring otherwise. … After reading the comments/replies I realize I am right about something happens and he changes at night. I am wondering now if I could care for him at home I work full time and we are in an extreme winter climate. I do not feel he is safe on his own. I make sure he eats 3 xs daily and has snacks and showers etc currently, Part of me would have it easier to have him at home for the wandering night/day thing but what about during the day in the winter when I am at work? the only adult daycare is 12 miles away and only take people in for one hour a day 3xs weekly.
Wow, you all have given me so much to think about. I have never really been around the elderly or had parents or grand parents to care for. I have thought well maybe that is why he is here in my life and my childrens life that have never had grandparents as well. My chidren that are at home are a wonderful daughter almost 16, and- in and out 18 year old twins that are being teens big time. One in school a couple states away and one in and out while she tries to figure things out with school and working etc. great girl too but definitley a teen brain time!! What is best to help him??? What are any one’s opinions of what I should do?
Have any clinicians out there had any experience with Thioridazine as a pharmaceutical aid in dealing with Sundowner Syndrome? The side effects are significant but perhaps manageable?
I’m a care giver and 90% of my patients have Alzheimer dementia sundowners. It’s a horrible thing to experience for patients, family, and care givers. Believe it or not I start all my patients on Rosemary capsuled. 2 every morning with breakfast. 100% all natural Rosemary. It is a natural pain reliever and helps tremendously with memory. I pray if anyone tries this it helps to some degree for everyone involved.
Just found this site! Yes! Our loved one has just begun suffering symptoms of what we’ve finally decided must be “sundowning”. We are about exhausted after 6 total ER visits in less than a year; 4 ER visits/short hospital stays in less than 4 months, the last 2 of which have been in less than 3 wks. These 911 episodes have all begun either in the late afternoon, after the sun goes down, or before the sun comes up. The hospital diagnoses have been: 1) Trouble swallowing due to food caught in his esophogus (not a heart attack), mild dehydration (3), fluid on the lungs (1), fall with bruising but no broken bones(1). And, confusion and weakness, secondary to old stroke damage, and mild to moderate chronic heart failure, and severe kyphosis, with all of them. In other words, mostly nothing deemed by Medicare/health insurance/the hospital to be hospital-worthy. Anyhow… his caregivers say he goes to bed around 11 pm but around 1 – 3 a.m.. he wakes, ready to go eat breakfast. He is usually anxious, and often complains of pain in his chest, shortness of breath, or, pain all over. “I’m so exhausted”, he’ll say. In the ambulance and at the hospital, the most they usually do for him is give him an I.V. of saline. Then he’s all better within hours; sometimes, within a few minutes. Ready to get dressed and get back to “the home” in plenty of time for Happy Hour. Last night, he was better a few minutes after paramedics were called, and by the time they arrived, he acted surprised and told them he felt fine! Medical pros all say, his heart is strong, for someone in his age and condition, and his other vital signs range from normal to “not that bad”. We recently put him on 24-7 sitter service, and a service which fills his Rx’s, counts them out into his pill boxes, and someone who points to the right box for him to take, at the right times of day. (It’s only been very recently that he lost the ability to do all this completely on his own, and he enjoyed it immensely!) We will start some of these techniques and tips for managing his “sundowning” , as soon as possible! His main sitter/caregiver has had some memory care training and has already begun doing some of these on his own. Will post again & let everyone know how well they work to relieve his symptoms! He is adamant about staying in his apartment, surrounded by his familiar belongings, rather than going into an assisted living or nursing home situation. And I don’t blame him. The upheaval of moving would probably do him in. Thanks so much for all of your stories, and advice. They are helpful in our effort to relieve his suffering and fulfill his wishes. And, my heart goes out to those whose loved ones are in lots more misery than our loved one, and who have fewer resources.