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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.