Monday, July 27, 2015

Beach date

"It was such an unexpected and lovely day; I just had to make the most of  it" said D."So we got into the car and went down to the beach together."
This attitude, of 'making the most' of  an available day and taking your love out for a date is a wonderful trait in anyone. But perhaps a little more so in D's case.
D's love is the lady I had written about earlier. The lady with the lovely smile and with the advanced dementia. D did not consider it a lovely day because of the  weather, but because she was awake and 'present'.
So he got her dressed, into her wheelchair, out of it and into the car, into the wheelchair again,and to an accessible boardwalk where the two of  them sat quietly looking at  the sea. After a couple of hours, he repeated the whole process in reverse.
When we met them a week later, he spoke with great happiness of the lovely day they had. We spoke  with her, "D told us you went to the beach. Did you have a good time?" Her face lit up. She nodded once, twice. Reached for his hand and stroked it.
These two have so much to teach me.

Wednesday, July 22, 2015

What is my core?

The thing I fear most for myself is dementia. More than illness, more than poverty, more than death even. It is dementia. The absolute incapacitation, the dependence, the being trapped in myself. And so far, I have told myself that it is because I don't want to be a burden to those that love me. I don't want to suck their lives into my care. I don't want them to pay the price of having loved what I once was.

But  now I am asking myself if that is what motivates my fear.

I know a woman with dementia. She once was a woman who sang and danced and charmed everyone who came into her life. Now, like the Cheshire Cat, she has faded away till all that is left is her smile. But what a smile that is! A smile for everyone sees and a warm clasp of the hand. Mian and I can spend  hours holding hands with this  warm woman and reflecting her smile.

I know other people suffering from this too. And no, dementia does not transform everyone into smiling beings. Mostly it is paranoia that presents itself; sometimes anger, sometimes regrets.

Maybe this  is what scares me. If I were to fade away, how sure can I be that the last thing that is left of me is a smile?