One of my favourite authors is Margaret Atwood. I really enjoy her novels, and last year decided to get a book of her poetry. When I read the following poem, I felt a chill and felt sure she was writing about Alzheimer’s disease. It starts like this:
“My mother dwindles and dwindles
and lives and lives.”
by Margaret Atwood.
You can read the whole poem here. She cuts right to the heart of the matter. Sometimes I think she is so cold.
In preparing to deal with the coming months and years as my mother’s illness progresses, a couple of books have been really useful. I found the following book for caregivers by Johns Hopkins so useful I bought two hardcopies to share with the family. First published in 1981, do make sure you get the updated fifth edition (2011).
I gave one copy to my daughter to read. Actually, she already knows quite a lot about Alzheimer’s, this will be supplementary information. I encouraged her to flip and read at random, so it is not a chore, but a way of learning more little by little. She flipped to a page and said Urggh! “Wetting”. She flipped to another page and saw “suicide”. Now, that’s new to me too. I will have to go and look it up.
At dinner last night, my friend who had visited briefly with my mother, said to me, Don’t you think your mother is terrified of what is happening to her?
I think she is right. And denial is the perfect defense mechanism to fight the terror. And so with other family members too. Denial leads to:
– buying special foods to improve mental health
– buying encyclopaedias and sudoku books
– tuning in to documentaries and watching the news endlessly to try to remember what’s happening
– saying my mother’s just doing that to seek attention, instead of acknowledging she cannot remember
– speaking in long sentences as one is used to, instead of adjusting into a new way of communicating
In time, denial will give way to acceptance, and acceptance will be accompanied by pain and grieving at the loss.