Posted 7-26-19
I really wish I was writing this little piece with some breakthrough hypothesis and with promises that I will follow up 24/7 with grant requests, fundraising, etc…because I figured out a way to make dementia not suck. No such luck.
Dancing around the stages of grief as we are, I/we get grandiose ideas of how to mitigate/make easier the symptoms while other, more sciency folks work on the chemical “cure”. We just want things to be better. Hence my hypothesis several months ago about using music to cement communication somehow. Take a look…I still love the idea although I am resigned to the fact that it is a just a scientific wishful think. Also, hence my thoughts about cuteness this week.
Here is where I was going, not unlike an arrow without the feathers:
My mom doesn’t know much, but she knows music and she knows cuteness. Therefore, there are things that seem to almost universally “hold on” in the memories of the latest stage patients. So, could we, at diagnosis, try to tie other memories to these “core memory anchors” somehow? Could we also, knowing these anchor’s ability to have memory resilience, use them to help with the mass anxiety for more patients instead of the practice today of drugging them until they are not anxious/cogent (I know, I know…chemical restraints are illegal. lol…funny, not funny)? SO…could we, at early diagnosis, almost brainwash/reprogram the mind, with their help/blessing of course, to bundle things together on these anchors like barnacles (like word association memorization tricks)? An Alzheimer’s boot camp of sorts to drill memories so deep that they do not have to be “thought up” but could be automatic.
Key thought: I have 100 hypotheses, but none of them address the real problem: brain mass loss. That I have to leave to the sciency folks. Remembering more longer is great for the family, but is it better for mom and the Sweet 17? This is perhaps a better question than I asked before (or better than “Why isn’t Mark spending more time in therapy?”) I cannot speak for everyone with the condition, or even the Sweet 17, but mom is actually happier NOT remembering as far as I can tell.
Proofs:
- She has stopped being nervous/anxious.
- She doesn’t repeat the bad stories of her youth over and over again
- She never talks politics or money any more, both of which bugged her
- She allows nurses to help (perform) her activities of daily living stuff
- She knows she should know us and is happy with that without the burden of knowing more
So, I suppose the bottom line is, do we want them to remember everything for us or for them? Only you can answer that for yourself. I waffle on it, I do not have the universal answer this conundrum because there isn’t one. I tend to put my reasonably well-functioning brain hat on as I evaluate my take on this and it makes me biased against the possible outcomes.
Thank you for hearing me think out loud in this topic and others! Your email, comments, posts, texts and etc are a daily encouragement to me. 🙂 I am a fixer and cannot fix mom or the Sweet 17, so expect there to be theories, some of which are crazy, at the table as long as this stinkin’ disease is a thing. 🙂
#EndALZ
Update: Mom continues to live in blissful happiness, although she continues to need/want more and more sleep. Gone are the days of anxiety, wild looks, escapes/attempted escapes, hoarding, and unhappiness, replaced by this new reality of late-stage dementia.
My heart is always with you and this dreaded disease! I’m glad that you post your thoughts and suggestions… I share them often with other families.
Thank you 🙂
My heart grieves with you…
Jesus knows your thoughts and pain. And I hope that brings you comfort.
May his peace be upon you.
Thank you Brother