I noticed a while back my changing relationship with such simple things as my scrabble and solitaire games which wake my sluggish brain in a morning….the need to press the ‘hint’ button more to help me with, what would have once been, the obvious. Looking and not being able to work out a move that I would have got in a nano second a while back……
What is even more obvious is the changing relationship with the two most precious people in my life, my daughters.
We’ve all been aware of it happening for some time, but lately it’s become more apparent….to me especially.
I could have called this blog, Dear Daughters. But that seems too personal, too private, too public, so instead I’ll talk generally about how our relationship has changed, with their agreement.
You think you’ll always be there for your children if you’re alive. You never think that the way you’re there may change. That with dementia, as well as adapting to living with dementia you have to adapt to the way you are there for your children as well. That’s harder to cope with.
The girls have noticed. I once would have remembered everything – I didn’t forget……I’m still their mum but a mum with increasing deficits, decreasing ability to help. Once facts, feelings, issues were all stored safely in the organised filing cabinets in my brain but now I use ‘reminders’ …….for everything……when they ask me to get them something, they’ll send me a picture of the article in question to make sure I get the right thing, so we have our coping strategies. But being there on a personal level seems so different.
When things happen in their lives it’s harder for me and I feel like I’m letting them down. I know they won’t see it that way but I do. They don’t know what I remember, I don’t know what I’ve forgotten, so it’s an added issue for them. I don’t want their lives to have the added worry of me but it’s inevitable and there’s nothing I can do to stop it. No matter on their age, you always want to make things better and when that involves an uncooperative brain it makes it less likely.
I know they’re more than capable of coping on their own but I want to be there….just as I was, as a mum.
How much do I remember them telling me? Have I asked the right questions? How many times have I repeated myself? Some days my mind is sharper than others and I amaze myself at the things I come out with, but on others, I’m cloudy, indecisive, struggle to help in the way I would.
No longer clutter compartmentalised in my brain, of work, of home and other strands of life. One subject, one thought at a time now the norm. That’s why I get a banging head when I’m with lots of people with lots of conversations going on. I just do my best in these situations to concentrate on one person and one voice but very difficult even though I love being in those situations. That’s why I find it easier to type my blogs in real time….my fingers do the thinking and leave my brain to relax………and ignore everything else around.
Totally gone off piste🙄……
My daughters used to come and stay with me when they needed a break. Sadly that’s no longer the case. I’m anxious if someone is in my house. How can I be anxious if it’s my daughter staying with me? But I wouldn’t remember it’s my daughter. It’s simply a noise in the night, an unfamiliar noise, a movement, an unfamiliar movement. So they wouldn’t feel relaxed either.
The one good bonus out of all this is that it’s brought them closer together. Not that they weren’t before but it’s different now; a nice difference…..every cloud.
Sad, how I’m still alive and yet I’m not there in the way I was………and it will continue in decline…..
This bummer of a diagnosis has a lot to answer for……