about writing and life and God

Dementia Diary 7: The true cost of dementia

on September 20, 2012

We had to have our day out today and I’m just back. Tearful. In tiny pieces.

Why does it hurt so much?

We went to a really nice hotel, where we’d been before, and we ordered from the same menu. Mine frankly was poor-to-horrid. But he said his was superb. That’s the word he’s using for every tiny thing these days.

His fish didn’t look superb to me. It looked a bit grey, but he ate it with apparent enjoyment. His pud – Summer Berry Eton Mess – looked gorgeous and he managed to eat it without mess too.

But when I dropped him back at the home (he rates his life there 7 out of 10, and days out with me 8 out of 10), I got to the gates and knew I was holding in the tears. Frankly I wanted to get out of the car, throw myself on the ground and howl!

Why does it hurt so much?

Humpty Dumpty sat on the wall.

Humpty Dumpty had a great fall.

All the king’s horses and all the king’s men,

Couldn’t put Humpty together again.

But I have to.

You have to.

We have to get on with our lives and turn up again next week as if nothing was the matter.

We have to climb up on the wall again knowing we’re going to get pushed off by this horrible illness called dementia which affects us as well as our loved ones. And we know we’ll be in pieces on the floor afterwards wanting to turn our face to the wall and give up.

But we can’t.

For their sake.

The text: “yet we live on; beaten and yet not killed; sorrowful, yet always rejoicing; …. having nothing, and yet possessing everything.’ 2 Corinthians 6: 9b,10

Prayer: Loving Heavenly Father, when we’re beat, comfort us; when we’re overwhelmed by the situation, comfort us; when we can’t take any more, pour Your strength and love into us so that we can go on, and somehow, amazingly lift our heads and give us enough love/hope/joy to keep us going. Amen.

Self-care suggestion: You know already I’m rubbish at this self-care business so do please send me your tried and tested ways of getting through the bad times! Today I’m going to just take some time out, after writing this. A cool drink. Do something absolutely mindless since I don’t have the energy/brainpower left for anything more. And I’m going to focus on being God’s embrace. I need to feel like the child I really am, safe in His loving arms.


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