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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?

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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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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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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
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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?
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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.
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I may not respond to all who have answered, but I am taking in all info, I appreciate it, thanks
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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.
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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.
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Pamstegman prety much summed it up best. Just go with the flow...
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I feel your pain, just wish my mother slept through the down bit. She can be fine all day and then go into whatever funk this is. You can usually tell it is happening by her demeaner or the staring like she is going over and over unpleasant things in her head, pushing herself to be more and more depressed or upset. She doesn't think she needs someone to take care of her and this is causing the most friction. Very frustrating and upsetting to watch and deal with. Just do the best you can. My mom is presently living with me, and I wish I could afford an assisted living situation for her. She wants to be at her house, but that is a 9 hour drive from here and I don't have a lot of help in the area to care for her. Working on it though.
Hang in there.
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my father is 91 and I think he has "selective hearing" if you know what I mean. we can whisper some things and he hears us then other times not. I doubt he would use hearing aids if given, he is stubborn. And getting him to see a doc now that in nursing home would be such an ordeal. not complaining about trying to get him there, but the last time we were in a doctors office, (physiciatrist), they had a FIRE drill (of all places) with the super loud alarm which all but scared the crap out of him. took me 5 min to get him settled and I also informed the doc that we were NOT leaving the building. she saw my dad while everyone else had vacated. This site has been more helpful is so many ways and I am so thankful that I found it. The meds they have him on are for the dememtia and the agitation/frustration moods he would have. thanks for the hugs
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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
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Dad will be 94 next month and had been driving up until 2 weeks ago. He "failed" the doctor's dementia test. He still lives alone and pretty much cares for himself. His problem now is short term memory. I sold his car immediately as it upset him to know it was there but that he couldn't drive. Now I take him for his rides, to the grocery store, etc. I tried to figure out what to do and came to the conclusion that until he exhibits something different to me, such as not eating his breakfast or taking his pills, I'm leaving him alone and just going day by day. I wish I knew how long this phase of the illness lasts. I take him to his favorite place 3 times a week. It's a fort that he was stationed at during WWII. I purposely tell him he has to tell me which way to go and he does it every time. My only problem with him now is his hygiene. That will need to be addressed soon. I'm doing it a step at a time so as not to upset him too much. I think at 94 he's doing well. Next month, who knows, but for now I'm just going with the flow.
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You're doing great with going with the flow. As the situation changes, you change your approach. I, too, think your dad is doing very well for someone 94 years old!
Carol
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I am living in a roller coaster with my mom now 90. She has dementia and lately she uses foul language for hours at the time every day and night. This is totally exhausting for me. I have two brothers in the same state and totally non involved. Not even a phone call from one of them.
She has been living with me for two years and I am her only caregiver. I take a respit every three months for 2 or 3 days, and I have an on call companion for my mom if I need to be away from home for more than two hours.
I am planing to put her in a memory care facility and I wonder if this is going to provoke her more anxiety.
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My mama has been diagnosed with dementia also. She fell and broke her hip. After the fall they diagnosed her. Some days like all others she has good days and other days are good she keeps telling me she was to go home and screams at me. I have become very emotional and have to leave the room she is in assisted living and so far I have got no help from them.
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to sildharma - it might create more anxiety, but your sanity is also important and to keep yourself healthy. these places do have activities (whether our parents choose to participate is their own choice), but we cannot be with them 24/7 unless you want to join them also at this place. My father occassionally will say that he has things to get done at home, I just tell him that it won't work for today and let it go at that. he doesn't know that he is there permanently yet, not sure if I will ever tell him. someone said if he doesn't ask, don't tell. why create more depression than necessary...
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My mom has her ups and downs like this. She is still in the "mild" stage, but still has these issues. However, some of her problems come from a combination with other health issues. For example, when she was having surgery, she was more down than usual. I don't mean she was depressed, more just lethargic and a little out of it and she wasn't on pain pills - it wasn't that - more probably her body adjusting, her routine was upset, things like that all together, I suspect.

So, it's worth keeping track of his other health issues to track how they affect him, but this really sounds similar to what my mom goes through, even in her "mild" stage.
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This is exactly what I've experienced and continue to experience in my 4th year of Adventures in Caregiving: mood fluctuations in both my mom, in a NH and dad, whom I care for at home. Today is a bad day for dad; very crabby, very depressed, lashing out at me. What you are seeing I feel is part of the whole dementia picture. Hang in there! You are not alone--don't know if that helps you gain perspective on it, but for me, knowing I'm one of a jillion caregivers out there, it always helps. Keep posting here & reading; it's been a godsend for me.
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It is possible your father has Lewy Body Disease rather than AD. Many health professionals are unaware or uninformed about LBD, even though it is the second leading cause of dementia. This is dangerous because patients, especially in nursing homes or hospitals, are often given drugs for anxiety or hallucinations that are harmful or even deadly to LBD patients.

Symptoms of Lewy body disease
People with Lewy body disease have cognitive problems (problems with thinking, memory, language, etc.) similar to those that occur in Alzheimer's disease. Therefore, it can be hard to distinguish the two. Some doctors think there are three distinguishing features and the presence of two of them makes the diagnosis of Lewy body disease probable:

1. Motor problems typical of Parkinson's disease but usually not so severe as to warrant a diagnosis of Parkinson's. Of these problems, an impairment in walking (a shuffling gait) might be the most common one. Also common would be muscle stiffness and a tendency to fall. Tremor would be less common.
2. Fluctuations in cognitive function with varying levels of alertness and attention. Periods of being alert and coherent alternate with periods of being confused and unresponsive to questions.
3. Visual hallucinations, usually occurring early on. Delusions may be common too.

It's possible that people with Lewy body disease are better able to form new memories than those with Alzheimer's disease. Compared with Alzheimer's, Lewy body disease may affect speed of thinking, attention and concentration, and visual-spatial abilities more severely than memory and language. Depression may be a typical symptom too.

To learn more about Lewy Body Disease go to:

http://www.lewybodyjournal.org/whatlbdis.html
Or
lbda.org

If you are caring for someone with dementia, please take the time to read and learn about the various kinds of dementia so you can be the best advocate possible for that person. Doctors rarely see their patients for periods of time that are long enough to get a true picture of their symptoms. As a caregiver, you get the full picture if you know what to look for. You might be the most important person in the doctor/patient relationship of your loved one.
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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.
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My mom has dementia and Parkinson's (among other health issues) and she too has good (well she is awake and able to get up) days and bad. Yesterday she was up and had one of her better days. Today she has only been awake to eat breakfast and lunch. It's hard! But like others have said, you get used to the challenge and appreciate the good days all the more.
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my father when home, would shuffle when walking the last couple of months, he would get agitated, continous talk of past stuff, sometimes he would have hand tremors, then be okay. the physciatrist (?) said it was not worth doing brain scan or whatever (he is 91) so I am guessing by our office visit she could tell. but honestly I am not putting him thru brain scan. he has been thru enough so we deal with what we have on a day to day basis. I could understand if he was much younger, than yes it would serve us well to have brain scan. thanks for your information.
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I am experiencing the same as the reply from NewHope. My 93 yr old father also has Parkinsons, and he is in and out of dementia. It is sometimes an uphill battle to keep myself from arguing with him about some imagined difference in his home or that he is really even in his own home. At this time I am still trying to keep him in his own home with my living with him.
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More information would be needed to give you an appropriate response, such as medicine being prescribed.

I must say that the response given by 'ferris 1', would also be my response @ this point in time with the info. given.
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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
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Today was not good mama is upset that she can't go home she thinks that she can take care of her self. She said I am going to sell my house and put you out. I don't live with her and she has never given me anything. I told her to do what she had to do it would be no lost to me. She tries to threaten me but it is not working. So please pray that she will soon come to turns will her condition. If I could look after her I would have already tried but didn't work.
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lbrown...then take her out for a hot fudge sundae...
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I think we will all become like this to some extent when we get older (not wanting to leave our home and go into a facility), but we understand now but we won't when we get older. I explain to my dad that right now mom cannot take care of him because it takes 2 people to help him to the bathroom and there is only one mom, so for now he has to stay put. he is not bed bound so no worries on bed sores, I guess its just the dementia and the intermittent disconnects in the brain. its like being on a solid path and all of a sudden a detour happens, and until it gets back on the solid road, we are on a different journey.
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Please be sure they are administering drugs at correct intervals. That can make a BIG difference especially with dementia. Also sometimes they dont eat enough before meds cause I have noticed that with my mother. For me its like vitamins they are great for you but if I take them without food I feel nauseated and very sick.
Even if my mother is not hungry, side effect some pills give her, I feed her snacks like ice cream which she never says no too. God Bless you and yours!!
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