What causes "good days" and then "bad days"? Is it diet or other?
I cannot figure out how to have more of the former. My Mother suffers from early onset of Dementia. Despite my consistent care, she has both good days and bad. Is there anything more I can do for more of the good days when she's not so confused?
Loretta. I'm going through the same thing. My mother is 79. diagnosed last year with mild cognitive impairment. Prescribed aricept. A few months ago an anti depressant was added because her dr saw a decline. She lives with me. There are days I think I have mild cognitive impairment because she's normal. Almost normal. Then there are days that are so hard to handle. I can't understand why dementia / Alzheimer's has so many variables. Every thing is not specific. One stage is like this for some one and like that for some one else. Very frustrating. I guess it's because it's the brain that's involved. And not like a heart attack. Very specific signs / symptoms. But very very hard to deal with this roller coaster daily
Lorettaa, I urge to find and attend a caregivers' support group, particularly one for caregivers for loved ones with dementia. You will definitely have people to talk to who are going through the same thing.
Rachel I just google searched the same question you had. I notice that this is been posted three years ago. I am going through the same thing with my mother right now and I am so confused now more than ever at the bad days seem to be more than the good days. I wish I had someone to talk to who is going through the same Thing that I am
Reading this makes me feel so much better. Just to know that others are going thru the same thing. My husband, which is 69 has not been diagnosed yet. He is in the care of a Neurologist who specializes in Alzheimer and Dementia. The Dr started him out on 5 mg's of Aricept, then to 10 mg then 20 mgs. I saw no improvement. He would have 4 good days and then 4 really bad days. It was like clock work. On the 4 bad days he would become so hateful and mad at me over conversations that never happen. I could hardly stand to be around him. We went back to the Dr, and this time he upped his meds to 23 mg's. There are some improvements that I have seen for the very first time. He is a little calmer on his some days. It gets over whelming at times, I am doing it all. He used to be the CEO of a heavy truck dealership, and now he can't remember how to write number' s or even my name at times. I try to remember it's not him, it's the disease. But it's hard when he is mad at me for days for not fixing his cereal for when he doesn't like cereal. How can they remember to be mad everyday ?
Thank you, Jeanne. Once again, you've said something I really needed to hear:
"She is not 'faking it' when she can't do something she could do earlier in the day. She is not 'getting better' when she has some great days in a row. Dementia fluctuates."
My Dad has had a number of great days in a row since I came home from my last trip to Oregon (I took him in to see his neuro psychologist for updated cognitive testing because I thought his memory had declined noticeably in the last six months).
I'm going up next week for the results, but in the meantime, I've been floundering a bit myself ... because my daily phone conversations in the past week with Dad have been markedly better. His speech is faster, his responses are faster, his comprehension is easier, more natural ... he has just seemed suddenly so much more THERE, an actual participant in our conversations, not just a tired, fading voice adding vague (and often not-quite-appropriate) filler responses at various points. I've been so happy to have these moments with him, but also feeling incredibly confused, and wondering if I'd been misinterpreting what I thought I'd been seeing in the previous months? Jumping to conclusions? After so many months of things seeming to be getting progressively worse, I have found myself wondering, could he actually be getting suddenly BETTER? Could that original diagnosis even have been altogether WRONG?
Except ... I know that this isn't likely. I've seen too much evidence to the contrary over the past year, and so have his other caregivers. And I've seen good days and bad days plenty of times before. It's just that this is the longest upswing I've seen in some time, and it came right out of nowhere and smashed head-on into my little wall of depression. My emotional defenses are badly shaken. I know intellectually that I can't expect this improved lucidity to last and that I would do best just to enjoy our conversations/connection while he is in a clearer place, and not waste time or energy mourning the passing of that clarity when the fog settles in again ... but somehow, I don't think I'm going to be able to duck that blow entirely.
I really wish I did know what triggered the ups and downs, if anything. (An extra hour of sleep? A half hour of exercise? A mug of hot chocolate just before bedtime?) If I saw anything even vaguely approaching a pattern, I'd probably fall on it like a ravenous, superstitious wolf ...
Things that make it worse are any illness, especially UTI, and lack of sleep. One thing that can help make it better is if you are calm and flexible. But you could be perfect, and bad days will still happen.
It is the nature of the disease to have fluctuations in cognitive, behavioral, and emotional functioning. I think that there are things we can do to take advantage of the good days and things we can do to do minimize the distress of the bad days, but I don't think we can do anything to change the nature of the disease.
All dementia has fluctuations. Some kinds of dementia seem to have it more extreme and pervasive. For example, Lewy Body Dementia is often called the roller coaster disease. I suggest that you track the ups and downs in a notebook and discuss them with her doctor at the next appointment. It may help in identifying the kind of dementia she has, and therefore in establishing the most effective treatment plan.
I recognized that my husband's bad days (or bad hours) were not the time for serious talks, or planning, or outings. They were best for calm activities, nothing challenging, maybe extra rest. If something was scheduled that could possibly be rescheduled that is what I did. This meant we missed out on lots of events and wasted a number of tickets, but the disease is what it is, and we adjusted.
If we were playing a board game and I could see that today it was too challenging for him (even though he did fine with it yesterday), I'd say, "You know, I'm not feeling quite up to this right now. Would you mind if we looked at a scrapbook instead?"
It is important that professional caregivers, helpers, staff at day health centers -- everyone who interacts with your mother on a regular basis understands this fluctuating nature. She is not "faking it" when she can't do something she could do earlier in the day. She is not "getting better" when she has some great days in a row. Dementia fluctuates.
A hard thing about taking care of someone with dementia is the acceptance that some things are just not under our control. The quality of our caregiving is important. It does make a difference in the quality of our loved one's life. But no matter how good we are at what we do and how conscientiously we do it, we can't "fix" dementia and make everything all better.
Best wishes to you as you learn (sometimes by trial and more trial) what works best with your mother.
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"She is not 'faking it' when she can't do something she could do earlier in the day. She is not 'getting better' when she has some great days in a row. Dementia fluctuates."
My Dad has had a number of great days in a row since I came home from my last trip to Oregon (I took him in to see his neuro psychologist for updated cognitive testing because I thought his memory had declined noticeably in the last six months).
I'm going up next week for the results, but in the meantime, I've been floundering a bit myself ... because my daily phone conversations in the past week with Dad have been markedly better. His speech is faster, his responses are faster, his comprehension is easier, more natural ... he has just seemed suddenly so much more THERE, an actual participant in our conversations, not just a tired, fading voice adding vague (and often not-quite-appropriate) filler responses at various points. I've been so happy to have these moments with him, but also feeling incredibly confused, and wondering if I'd been misinterpreting what I thought I'd been seeing in the previous months? Jumping to conclusions? After so many months of things seeming to be getting progressively worse, I have found myself wondering, could he actually be getting suddenly BETTER? Could that original diagnosis even have been altogether WRONG?
Except ... I know that this isn't likely. I've seen too much evidence to the contrary over the past year, and so have his other caregivers. And I've seen good days and bad days plenty of times before. It's just that this is the longest upswing I've seen in some time, and it came right out of nowhere and smashed head-on into my little wall of depression. My emotional defenses are badly shaken. I know intellectually that I can't expect this improved lucidity to last and that I would do best just to enjoy our conversations/connection while he is in a clearer place, and not waste time or energy mourning the passing of that clarity when the fog settles in again ... but somehow, I don't think I'm going to be able to duck that blow entirely.
I really wish I did know what triggered the ups and downs, if anything. (An extra hour of sleep? A half hour of exercise? A mug of hot chocolate just before bedtime?) If I saw anything even vaguely approaching a pattern, I'd probably fall on it like a ravenous, superstitious wolf ...
Things that make it worse are any illness, especially UTI, and lack of sleep. One thing that can help make it better is if you are calm and flexible. But you could be perfect, and bad days will still happen.
All dementia has fluctuations. Some kinds of dementia seem to have it more extreme and pervasive. For example, Lewy Body Dementia is often called the roller coaster disease. I suggest that you track the ups and downs in a notebook and discuss them with her doctor at the next appointment. It may help in identifying the kind of dementia she has, and therefore in establishing the most effective treatment plan.
I recognized that my husband's bad days (or bad hours) were not the time for serious talks, or planning, or outings. They were best for calm activities, nothing challenging, maybe extra rest. If something was scheduled that could possibly be rescheduled that is what I did. This meant we missed out on lots of events and wasted a number of tickets, but the disease is what it is, and we adjusted.
If we were playing a board game and I could see that today it was too challenging for him (even though he did fine with it yesterday), I'd say, "You know, I'm not feeling quite up to this right now. Would you mind if we looked at a scrapbook instead?"
It is important that professional caregivers, helpers, staff at day health centers -- everyone who interacts with your mother on a regular basis understands this fluctuating nature. She is not "faking it" when she can't do something she could do earlier in the day. She is not "getting better" when she has some great days in a row. Dementia fluctuates.
A hard thing about taking care of someone with dementia is the acceptance that some things are just not under our control. The quality of our caregiving is important. It does make a difference in the quality of our loved one's life. But no matter how good we are at what we do and how conscientiously we do it, we can't "fix" dementia and make everything all better.
Best wishes to you as you learn (sometimes by trial and more trial) what works best with your mother.