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wolflover451 Asked September 2014

Alert some days and down others. Anyone else see this in dementia people?

My father is now in a nursing care center but even before this, he would have 2 days where he was more alert (meaning awake) and then he would have a day where he would hardly have his eyes open but yet he would ramble on. he wasn't sleeping but his eyes were barely slit open and I knew (know) it would be a down day. But I have seen other patients at this facility that hardly go thru this process.....what is the difference or does anyone know? does it have to do with the stage of dementia they are in?

EXPERT Carol Bradley Bursack, CDSGF Sep 2014
I agree with the sentiment that everyone is different. There's no way to predict how one day will go in relationship to another day or even what is going on that day.

My dad's days were entirely unpredictable and followed much the same pattern that you're talking about. I've had to deal with this literally one day at a time - never knowing how each day (or night) would be.

I'm not sure that they type of dementia matters. Even other illnesses such as cancer, rheumatoid arthritis and lung disease can follow this pattern. I'm caring for someone with several diseases including lung disease and finding a pattern seems nearly impossible.

Please keep in touch so that we know how you are doing.
Carol

pamstegma Sep 2014
We all ride that roller coaster, from one minute to the next. The hills get higher and the curves get sharper and sometimes everything is upside down. At the end you want to hit the brakes. There aren't any.

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newhope Sep 2014
People with Parkinson's Disease have this. In Parkinson's lingo it is called "days on, days off" or "sundown syndrome" because it often happens that time of the day. My husband had Parkinson's and there are times when he slept the whole day; other times appearing to be asleep, but able to answer simple question with a nod of his head or a weak yes or no; other times he was in another world; and days when was completely himself and alert. At first, the "off" days would upset me, but once I got used to what I referred to as the rotation system of his brain, I was able to accept it, knowing he would return to his alert self again.

Litldogtoo Sep 2014
Dementia is an insidious disease. There are a myriad of books written about it and it seems everything I read is the same. You just have to take it the way it presents itself seemingly minute by minute. I had one doctor tell me that when it gets too bad, there is absolutely no reason whatsoever anyone should feel bad about putting their loved ones in a nursing facility because their loved ones just don't know where they are. I'm beginning to believe that as my mom's brain disintegrates day by day by day.

We are cognizant. The brain of dementia/Alzheimer's is not. If people want to continue to disrupt their lives thinking their patient is aware of who they are, etc., then they should understand the brain is dead. Just plain dead. I'm sorry I'm being so down today, but that's how I am right now...down. I'm wondering why on earth I'm even continuing to do this.

wolflover451 Sep 2014
to sunnygirl: yes my father had been diagnosed with moderate to severe dementia/alzheimers just a couple weeks before he fell 2 times within 24 hours and was in ER. no broken bones/fractures, but my mother is no longer able to care for him. she is 87 with arthritis in knees/back. he is on arricept and 2 others for the anxiety/depression. but he has been like this even before the meds so I guess the roller coaster ride is what we are on. And in real life I hate them..haha ...have to make a joke. thanks for everyone's input

anonymous179890 Sep 2014
I don't know what the answer is but I imagine it is fairly common. My mother, 88, has had the dementia that comes along with parkinsons disease and a number of strokes. In a nursing home for almost two years, lately one day she's alert and back to her mean and nasty self then a day or two later she's a crumpled heap of skin and bone, sleeping all the time and looking like she won't make it through the next 24 hours.

The doctor says it's just natural progression (she had another stroke 2 weeks ago) but everyone is different. Perhaps your father is taking a medication that isn't agreeing with him?

ferris1 Sep 2014
The reason dementia is such a insidious disease is that each person with dementia is unique and presents with their own set of symptoms. Whatever your loved one is experiencing in their brain function cannot be compared with others. Love them for who they are right now since this is a terminal illness.

cmacgreg52 Sep 2014
My mom was recently diagnosed with "age-related dementia"? No good answers from docs, but I too have noticed ups and downs from day to day. Sometimes she's so weak and anxious she sleeps most of the time. Other days she's alert and full of energy. Just got her new hearing aids, which she fought tooth and nail to deny her severe hearing loss until she put the new ones in her ears.That day, she make an incredible jump from anxiety and weakness to an alert and active nature. She had a calmness in her face, and within a very short time, was no longer fighting the hearing aids, and once again could hear us without shouting. Not that the dementia was miraculasly cured, but being legally blind, she once again had another sense available to her to interact with others.
She's 87, and still struggling day to day with the dementia and anxiety, but I'm amazed at the results of the hearing aids. Has your dad have signicant hearing loss. I've read an article about the link between hearing loss and dementia, so it's just another suggestion to look into. I DO understand your frustration, and some days just seem over the top. Hope you get some helpful info from the docs, but keep in touch here for support and others experience. You have a wealth of knowledge right here. Hugs to you for the work you're doing.

Jazmine1 Sep 2014
I care for my mom still at home, and she has some ok days and some really bad days. Make sure he is not dehydraited, and of course go over meds. Is he bed bound? if so make sure he is not getting bed sores as well. It is up to us to still advocate. As I would like believe that all facilites are great, this is not the case. He can not always tell you, or perhaps not at all, we have to become the mother bear, protecting uour cubs.

Good Luck, Jazmine1

Sunnygirl1 Sep 2014
Does your dad have a diagnosis? Do they know what is causing his dementia?

I am exhausted trying to make some sense of it. We are in the process of testing now to get a definite diagnosis for my cousin, but with dementia it seems to be so unpredictable. One minute my cousin is having an anxiety spell, crying, making irrational comments and complaining, but an hour later, she has no memory of it and is fine. I have lost sleep over issues she was having, but the next morning they were non-existent. Her behavior is all over the place.

I'm not sure what you do. I will make some kind of decisions after we get a definite diagnosis, but even then, This unpredictable and frustrating behavior is likely to get worse over time, not better. I guess the next step is to see if there are any medications that can stabilize things. I guess that's my only hope.

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