Memories are a large part of our identity… Imagine losing all of yours.
Recently I published a TED talk about false memories, and although I’ve not yet had the time or brain energy to process it completely, it might be of value to consider the impact of false memories on dementia, good or bad. One of these days I’ll remember to!
However, it has had me thinking about memory again, and the impact of not being able to remember or recall one’s own world and life. I also recently met someone who plays the piano, and when she saw my piano, asked me if I played. Well, I used to play the piano, not that well, but well enough; I could read music and generally speaking make a half reasonable tune. Now, I cannot even read the sheet music.
I play the scales most days, partly to try to get my brain to remember, partly to exercise my increasingly painful arthritic hands, and finally as part of my neuroplasticity brain training. I also find it relaxing, even though the scales are a tad boring!!!
So what is it really like losing some or almost all of your ability to recall information that you once knew?
Initially it is embarrassing and confusing, and then a very strange experience to not remember part of your own identity. I don’t mean simply misplacing the keys a few times, but NOT REMEMBERING knowledge you once had, including things like people’s names and faces, or in my case, things like medical knowledge or how to play read sheet music and the piano. Frustration, annoyance, humiliation, even a sense of shame creeps in.
Ultimately, as people with dementia move into the final stages of the disease, it depends on the type of dementia as to how it impacts your memory. For me, even now, it leaves me feeling like a slowly emptying hourglass…
As always I have enjoyed this thoughtful post Kate and I admire your insight, honesty and generosity of spirit. I also appreciate comments by others and I’ll follow the improvisation link next. It makes sense to me that for some people, dementia can be a little liberating for a range of reasons and it could be enabling when it comes to improvisation… Please know everyone that you dignify life with dementia by sharing and caring about each other and I wish you the best as you strive to maximise your life’s potential.
LikeLike
Thanks so much Denise… my DH tells me I am much more creative since having dementia… whatever that means!!
LikeLike
Thank you for your tireless honesty, Kate and for making people think so very deeply about what dementia really means. This blog made me think of the powerful exercise you described to me whereby people have things that they hold dear systematically removed or destroyed. As you know, we are planning to explore this at our Whose Shoes? workshop in Malta next week. I will of course let you know how we get on but any opportunities for people to experience loss will stay with them long after the ‘secure unit door’ is re-opened. 😉 Lots of love, as always xoxox
LikeLike
Thanks my dear ‘Imaginary friend’… and the session in Malta is really coming together well… xox
LikeLike
I’ve lost all my memories from the past – of the people themselves (not their faces) events, living, school, work, holidays etc. But I still remember the names and faces of most people, how to walk and talk, how to type etc. Plus I have almost no ability to make new memories. It’s very difficult. VERY.
Losing my memories has left me feeling so lonely and empty. Even though it’s been 16 years I still get upset over it. And since I’m so housebound now I’ve lost a lot of friends, but don’t have any “back up” of memories to keep me company.
It’s very upsetting.
LikeLike
Hoping our online friendship helps just a little… I do know what you mean, and everyone with dementia or even mild cognitive impairment talks about how difficult and frustrating it is. Sending hugs, and maybe my next trip to Sydney we will meet! x
LikeLike
Oh my friend I do hope you are doing the Curamed (Turmeric)….It is for pain as well as lessening Dementia. We can get you better with things that heal not hurt….Hang in there friend….Love …..VK
LikeLike
Thanks dear VK… working on the healing, and writing about the reality, but it is not that awful all the time… I have definitely got used to not remembering things!! Love and hugs…
LikeLike
Thanks Peter, that was a great TED talk.
LikeLike
Yes, yet another great TED talk…
LikeLike
Hi Kate.
This is an interesting subject.
I studied law a number of years ago now.
I was recently going through some boxes in my shed and found all my old law books.
I stopped and started reading some parts of the books and I realised I couldn’t remember how to use the books.
I know I use to use them religiously to study case law and the criminal code. But for the life of me I couldn’t remember how I once used them.
It shocked me that something I once knew I cant anymore.
Was bit of an eye opener.
LikeLike
It is definitely a shock Steve… Not anything others can really understand either, unless it happens to them. So different to leaving the keys in the next room…
LikeLike
Oh, Kate: your post about the piano is so poignant. My sister played the piano and the cello. I had hoped that the skills memory might allow her to keep it up but in her case that didn’t happen. I LOVE the idea of improvisation–do let me know how that goes. I know that if I have really learnt a dance my feet just do it automatically without my brain or memory being involved. x
LikeLike
I’ve been thinking of dancing, but Mr Arthritis even makes it hard to walk…
LikeLike
Beastly Mr Arthritis. x
LikeLike
You said it, and the only medicatkion that works is bad for my heart!!! x
LikeLike
It has been a pleasant surprise to find that I can more easily play the fiddle now, by ear, without music (the slower, simpler tunes I know); but only if I let it happen, without trying. It must be coming from some other, less structured, part of the brain.
LikeLike
I’m going to have to try improvisation…
LikeLike
Dearest Kate…..I always felt that going blind would be one of the worst things that could happen to a person but since being attacked by Early Onset Dementia, I have found that losing one’s memory/memories is profoundly far worse than I could have ever imagined…….anger, frustration, despair, despondency, are just some of the feelings that overwhelmed me……………and that I can now confidently talk about it makes me feel so good……….Kindest Regards….Tony Hogben.
LikeLike
Dear Tony, Thank you for sharing your experience here too, and I am glad we can both talk about it as it does help. Not only us, but it teaches others. Take care, Kate
LikeLike
you are one brave lady, blogging this and with all that you do for the advocacy of dementia, people will never forget you.
LikeLike
Thank you my friend, and well done not using the word ‘just’!! xox
LikeLike
Here’s the link….
LikeLike
Hey Kate.. There was a TED talk about brain scans done on improvisation with music.. Whole other parts of the brain were activated.. Might be worth just playing with improvisation while listening to jazz or your favourite music. Might be a big less boring..
Peter Gooley
Independent Alzheimer’s and Dementia Coach
LikeLike
Thanks Peter… and for the link in your next comment. Very interesting, and worth trying or at least playing around!
LikeLike