This morning my husband and I discussed a few incidents or D-moments that have taken place the last few weeks, which have really knocked him out of his denial bubble. He has subsequently been a little down in the dumps, as he is forced to face what is ahead.
Thankfully last night he went out with three mates for their monthly movie and dinner night, where they behave like 12 year olds, and it has cheered him up no end. They usually ask for a family pass, mum, dad and the two kids!!! It also means the dark cloud lifts enough for us to talk about it.
When he notices a change due to dementia, a new deficiency or loss, it is rather like being punched in the face, hard enough to break your nose. The damage is not there for others to see, but sits inside his heart like a dark cloud. It is more than confronting, and he said again this morning, “I think you are going along really well and things are not changing that much, until something happens that ‘hits me in the face’!” A couple of weeks ago, I forgot his name, and had to ask a friend who happened to be here at the time. It was distressing for us all, but especially so for my husband.
‘How can it be happening?’, we both wonder, as I do still seem to be coping well, and the deterioration is not showing very much if at all to others when we go out because I can still manage to paddle hard. But the paddling is getting harder, and at home some nights when I am tired and can no longer paddle, my words are very garbled. This is definitely a big change, and it is taking me longer to get my words out even when I can paddle well, but especially when I am tired. I’d have to say it is a little numbing…
Knowing where the PPA is heading is unsettling, to say the least. Finding extra creativity and new friends via blogging doesn’t always make up for the losses, but does help enormously most of the time. Thank you. As my husband and I face the road ahead, all we can do is live as well as possible, and try to find some meaning in what is happening. Having wonderful friends who are also mentors like Richard Taylor and Shibley Rahman helps a lot too, and being involved in advocacy is how I get through my days with a positive heart.