She ain’t heavy, she’s my mother

To see a world in a grain of sand,

And a heaven in a wild flower,

Hold infinity in the palm of your hand,

And eternity in an hour.

Excuse two posts in one day. I am not trying to melt your blog reader. It’s just been a thoughtful 48 hours.

I had an interesting conversation with a friend the other day. We were catching up after Christmas and sharing our tales of family derring-do. I told her about mother’s deteriorating state and we reflected on the description of dementia as “living in the moment”.

My mother is happy. She doesn’t remember anything from a few minutes ago: who she saw, what they said, how long since she saw them, even who they were. She sits and sings and hums, Sometimes she knits or looks at a book or newspaper, but without absorbing the text. The same brief newspaper story and photograph will absorb her all day.

My mother is happy. She lives in the moment. All she is aware of is what is happening now. You might say it is a consummation devoutly to be wished (you might not, of course, your prerogative).

There is currently a vogue for something called mindfulness, or “living in the moment”. You can read about it in an article from 2008 in Psychology Today.

This is not quite what my mother experiences, but it is akin. She is happier than she has been for some time, no longer lonely or missing lost friends, or dad. She has no worries. We all might wish for such inner peace.

However, her inability to remember what is happening causes severe stress when she is out of her usual environment. I took her for an eye check-up at the hospital before Christmas. It was a long visit because of a computer meltdown. The whole time she was unsure where she was or why and kept asking. The only thing reassuring was that I was with her, so she assumed things were under control.  I was not worried so she was not. I had to hide my impatience so as not to concern her.

Then is started to get dark outside and that did worry her. She was pretty sure she shouldn’t be out at night. It was only 4 pm but no matter how many times I showed her the clock, she forgot.

The end result of all the stress, and then the excitement of Christmas, was probably another vascular incident (the only way we know is when she suddenly gets worse) so she is now even more shrunken in on herself. She no longer reminisces about her childhood (we finished with married life and family about a year ago – she is unwinding before my eyes).

There is a critical difference between the dementia sufferer’s living in the moment, and the meditative one. Do not be fooled, my friends, by facile and trivial comparison, by the similarity of phrase and word. One is about seeing a world in a grain of sand; the other is about losing the world one grain at a time until all those falling grains trigger an avalanche and you are buried under their catastrophe.

I hope you will allow me to be honest with you about this. Or rather I hope you will allow me to be honest and not despise me utterly. My mother died a time ago and I have her husk living in my house. Watching her crumble is occasionally unspeakably distressing and a part of me wishes it were over. I don’t know who this woman is, and I don’t really want her here. Often I don’t think she knows me either. When she calls me “love”, I am her daughter; when she calls me “dear” I think I am probably a carer. I don’t have the courage to ask her. All I do is keep her alive, breathing and humming and reading the same paragraph endlessly. Some days my heart could break for both of us.

Some days though she is comparatively alert and then there is a flash of the woman who was thrown out of the dance hall for jitterbugging with GIs, or who topped her class at Pitman’s College, or who won the Christmas Raffle at work and spent half of her winnings buying me a book which turned out to be my favourite book of all time. Those days are more seldom now, but still they can shine out.

We never know which way life will take us. Clearly this weekend has taken me down some shady paths by reflective waters. Tomorrow I hope to step back out into the full light of day.


Go on then, it's your turn

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