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My dad has some dementia (sun-downing) in the evenings, generally not too bad... he does repetitive movements, kinda becomes internal, normally doesn't say much... and I, generally, can talk him through these, distract or scratch his back or gently massage his hands, along with other tricks...


Well, tonight, my dad had a very long dementia episode, and he was really, really! scared (so was I). He kept asking, what's wrong with me...what's wrong with my brain. I have always been a straight-shooter and never lied to my parents...they like the truth and so do I!  All I could muster is gently telling him he's getting older and our minds change and our bodies age...yet you're doing pretty good, dad...and all your affairs are going well, really...he kept at it though...asking me over and over...I went through my bag of tricks and nothing worked...finally, he kinda wore himself out, and wanted to go to bed. Whew. Yet maybe it will happen again....what will I say then??


Another Q.
He's hardly on any meds (BP) and has a very clean diet. Maybe there is something out there that won't turn him into a zombie, and yet help only during these episodes so he's not in any anxiety (like tonight--so intense!)?
I plan on talking to his doctor about a PRN tomorrow, yet thought I'd ask about other's experiences... Thanks for reading, listening!!

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My friend that I take care doesn't question what's wrong. And for the most part never gets sundowners syndrome. But when he does I have a PRN for 3Mg of Melatonin. It's an over the counter so if you didn't want the doctor to order it, get it from a Health food store and give it to him on your own. It should calm him without using an RX.
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PRN's are not the best idea. It takes time for many meds thAt will help to build up in the system. And there are plenty of meds that will help him, thus you too, that do not turn them into zombies. Your goal should be for him to be less anxious.
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This is the first time I asked a question...I will meditate with all of your answers.

In gratitude for all of you!
Savitaa
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In reading an article in I think Time magazine on what to expect when you are dying - an episode of aggression is one of six common responses to end of life - I recall my friend's dad died because they gave him so much morphine because he was so upset and they couldn't control him. Sounds like the same thing to me. BUT Savitaa, that does NOT seem to be anything you are dealing with right now. That was in response to the comment just before mine on this page. I suspect that when someone asks what is wrong with my brain or anything on those lines, they are looking to see how the world will respond to this. Hearing there is someone there to help them through is the desired response, since "I can fix that" isn't an option.
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Hello! Your dad is very lucky to have someone looking after him such as you. I have worked in care homes and on elderly care wards, specifically with people who have dementia. It is really difficult when people have a moment of clarity that something isn't right with them, and they can become extremely distressed, inconsolable and sometimes aggressive. We are constantly being giving conflicting advice on how best to deal with these situations. I think in the case of your dad, if it is happening infrequently and isn't too distressing for you, try to ride it out. Perhaps having some literature together for him to look at about his condition or appointments, if thats something he would be interested in, or a conversation explaining what is going on. For some people, this creates more agitation, but for others knowledge is power, I think it depends on their personality prior to the diagnosis. Equally, you can try distractions, you seem like you have a good variety of tools in your bag of tricks! It can be particularly hard to settle dementia patients in the evening. Sometimes a routine can help, as it can stimulate patterns in their brain for them to recognise what is coming next and avoid anything that will alarm them, or make them feel unsettled. If the episodes become more frequent, something PRN such as lorazepam or diazepam may help to ease any agitation, and shouldn't impact heavily on his functioning in the morning if the correct dose is sorted! Hope some of this helps, even just to know you aren't alone, and you sound like you're doing an amazing job!
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Savita,
Is your dad diagnosed by a neurologist? It is important because there are other conditions that can give similar symptoms but are treatable.
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Most of the posts here have been very helpful. I didn't realize there were so many others also thinking they were living in a hotel. I would very much like Dad to go into assisted living now but am concerned he would not recognize anything and get even more anxious. Now he is usually only anxious in the evenings when he doesn't know what to do with himself before bedtime. I don't know what to suggest as he doesn't have hobbies, doesn't like puzzles, has a very limited attention span, and watches a lot of TV/reads during the day. Has some companion care in the early evening and sometimes during the day. He has always denied his dementia and stroke, so I don't press it, but I also try to reassure him as much as possible. He seems to be declining this week. Would take him into my home but he doesn't think there is enough room as it is half the space he has now and difficult to get around.
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"Jeannegibbs"' response was so compassionate and made a lot of sense. My husband started in 2004 with a sudden bleed into his speech center, with the diagnosis of CAA (cerebral amyloid angiopathy) and had to learn all over again how to read and write. He was found to also have normal pressure hydrocephalus (NPH), a problem associated with Alzheimer's in many cases, with slowly developing balance problems off and on. At that time, he fully understood what was happening and his diagnosis of early onset Alzheimer's with NPH, as he and I were both physicians. He compensated well until a second larger bleed 7 years later caused loss of reasoning, judgment and memory abilities, and his balance became much worse due to the bleed having worsened the hydrocephalus. Up until then he had still been riding his bike 9 miles a day! Thereafter, he more rapidly began to decompensate, and the usual late stages of both conditions showed progressive worsening. It was then that he began to no longer understand what was going on with his brain, and would suffer because he couldn't remember why he was the way he had become. I remained positive throughout, and although he had to enter assisted care in 2013 due to more severe problems with incontinence and my development of a severe vertigo that left me incapable of further care, we remained positive through his rather difficult adjustment to not seeing me every day, and he gradually couldn't remember why he was there, but adjusted OK. Following another hospitalization for a serious bacterial wound infection in January 2016, he went more rapidly downhill, and finally lost his ability to swallow, resulting in his death in April, 2016. He still knew me until the end, although he could no longer communicate except for a wan smile when I would tell him how much I still loved his dimples! He was a great man, humanitarian, and had been a model of good living, but had inherited that pesky gene from his father, about which nothing can be done. So we still tried to live life at its fullest, taking him into nature as often as possible in his wheelchair, frequent meaningful visits, and birthday celebrations which he loved, even though he couldn't remember why all those people came to see him! I'll miss him until the day I die...
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We need to remember when it comes to dementia, there are times when a person is in a child like mind environment. Thus we need to relate to that adult as thought they were a child.

If a child thinks there are monsters under their bed.... telling them there is no such thing isn't going to ease their fear, it will just make it worse.... better to play along with them... such as putting in a night light to chase the monsters away, a child will believe that and everything will be alright with the world.... until tomorrow when they see a bug.

I had to play along with both of my parents. Convincing my Mom she was in long-term-care when she thought she was in a hotel would have been a fruitless conversation. Both of us would have been upset. Mom smiled when I said yes, she was in a hotel.
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I believe in total honesty. You can deliver it gently, but the truth is the truth. Sometimes it's better to know what you're dealing with and what options are available.

I recently had to talk with my DH about seeing people that aren't there. It's better to know what is going on.
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Just to add, I think you're responding to your dad very well. Honest, but gentle and positive.
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When my hubby asked me I told him he was older now so his brain wires were getting g rusty but I am younger so mine are ok & just ask me when you can't remember. He never asked again. At sundowners time, in fact whenever he is awake or not at adult day care I have to keep his brain busy & that is w 100 pc puzzles & dot to dot. 9 yrs of alz. He sleeps a lot & on adult day care days have to wake him. Keep being calm & patient & assure him you will never leave him alone. Just think your brain can't remember where you are & panic sets in. Remember when you were a 5 yr old in lge department store, can't see mommy & don't know anyone how you felt. That is what this horrible desease can do to them. That's why they need constant reminders they are safe & you love them.
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My dad is very similar. I'd always heard that they're not aware of what is happening to them but I haven't found that to be true. He may not realize the severity but he will say "my brain isn't working right" and "what is wrong with me?" His mental status has deteriorated the most over the last 6 months and he began obsessing more over things and not recognizing he was in his own home. His GP prescribed a very small dose of xanax for anxiety/ agitation (0.25 mg) He can have it up to 3 x a day and we have mostly used it at night which has helped him sleep through the night without feeling dopey in the morning. A few times I have given him a dose when he has become overly obsessive in the afternoon and it helps him relax. We started seeing a neurologist and he has also started him on 10 mg of Namenda per day. Too soon to say if this is helping but no negative side effects so far. Hope this helps.
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I suspect that in some cases giving a candid answer might be best, especially if one is very old (so it comes as less of a "shock" in the sense that such conditions are more likely at advanced ages) but is lucid enough to understand. If I were in that situation, I believe I would want the truth rather than a "semi-BS" answer. However, each situation must be handled as appropriate.
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Savitaa, my Dad also had sundowning, and there were times when he would telephone me saying he can't think straight and is forgetful. I did the same as what you did... was able to reassure him that as we age all then to forget, even I have that problem... then I would say "gosh, I can't even remember what I had for lunch".

Other sundowning days my Dad would telephone me saying he had a late meeting at work, he had missed his bus back to the house, he will stay in the hotel he is calling from. Well, Dad had retired back 30 some years ago... last time he took a bus to and from work was in the 1940's... and the hotel was his room at Memory Care. All I could do was play along, as I didn't want to scare him about his memory.

Once in awhile he would call me saying he didn't know where he was. Oh my gosh. So I asked him does the furniture look familiar, what about the paintings on the wall, etc. Eventually he realized he was living among his own stuff.

Dad's hobby was the weather, so he was always glued to the weather channel. I was able to divert Dad to the weather, and strangely that help him snap out of sundowning while I was talking to him. He would tell me what States were having floods, snow storms, and what cities had their schools closed due to the snow. Strange how memory works with dementia.

As for meds, Dad didn't take any for the sundowning. He was sleepy enough from the blood pressure pills and other pills related to his heart.
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Savitaa, I truly admire you for your loving and caring relationship that you have with your Dad. About six months before she passed, my mother, in an increasingly more rare lucid moment, told me, "When I look in a mirror, I don't recognize myself anymore." This was heartbreaking and not knowing what to say, I bumbled my way through it. Since she passed last November, I find myself regretting more and more not knowing what I should have said and what I could have done for her but didn't know how. All I concentrated on was her dramatic, paranoid and delusional behavior which was present before her dementia but which worsened as the disease progressed. I wish I could have had the relationship with her that you have with your dad. You have my highest admiration.
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Wow, I feel like that you're talking about my dad. He keeps asking "What's wrong with me?" while he's grabbing his head. He has dementia as well. I don't know what to say except teasing him (we always tease each other).

Your answer sounds good and then you may have to repeat it if he asks again. I don't have a better answer.
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Like Barb, I have never used the words "dementia" or Alzheimer's" when talking to mom. When she became agitated because she couldn't remember something, I would tell her that her brain must be full from all those years of remembering schedules and birthdays, so now I would remember those things for her. At one point I used the example of a tape recorder (something from her era) with a full tape. I told her that her brain had erased part of the tape so that there would be room for new information. She accepted that explanation at the time. Now she has progressed to the point that she doesn't realize that she has forgotten things. Trying an appropriate medication is a good idea, but also keep in mind that this phase is likely to pass.
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My mom has vascular dementia from a stroke, along with aphasia.

Every once in a while she says to me "what's wrong with me?"

I say "you had a stoke, mom, it caused some damage". This is news to her every time I tell her. I don't talk about dementia. I talk about damage.
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Has your Dad been under a doctor's care? If his condition gets worse has he expressed what he would want etc. He sounds reasonable now and knows something is wrong so make sure you discuss the what ifs. He knows you love and care for him.
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My mother, now 96, cannot recall what the day or date is. She suffers from advanced dementia and nothing has helped. Occasionally, mom will call my wife or I by other family names and then corrects herself. Mom has lived with us for over 20 years and we have seen a continual decline.

She suffered a stroke while staying with my brother and wife and they refuse to take her back into their home. Other siblings have either refused or cannot take mom into their homes. Since I am retired, I am the only child (I am 67) that stays at home and can be around to watch over and ensure he does not do anything dangerous, although she comes close at times.

I (We) considered placing mom in an Assisted Living Home about a year ago, but 20+ years ago that was tried and she was miserable and made me promise she would never be placed in such a place again. So I deal with her decreased memory and strange behaviors with as much patience as possible.

Mom's doctor indicates that eventually, her brain will forget the activities that keep her alive and she will end her days, most likely while she sleeps. But there are no medicines that will help in her case.

Meanwhile, I am limited on how long I can be away from overseeing her activities, ensuring her safety, and reassuring her through the diminished mental events.
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savitaa, just wanted to say what a great daughter you are. :) Knowing the above and other great replies will be here, I'd like to suggest that right then you could add 'right now the brain is making you worry, let's see if we can work through that.' ?
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My husband always knew his diagnosis was Lewy Body Dementia. As an engineer he believed in cause-and-effect and not knowing "why" would have been worse for him than facing dementia. This is NOT true of everybody; you really have to know your loved one to decide this.

I could tell my husband, reassuringly, "You have an excellent brain. Your memory is first-rate. You had a great education and a very successful career. Right now your brain doesn't always work at its peak. Your memory sometimes lets you down. When that happens I will always be here to help you compensate. I will be your memory when you need me to be." This worked well for us.

The only way you find something at the correct dose to help without trying the patient into a zombie is by trial and error. It may take several tries, but finding the right medication is well worth the effort.
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