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.
It’s a difficult,merciless thing. All we can do is ride along and take it one day at a time.
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I agree. Some day sooner or later we will have those painful conversations.
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I don’t know how you found me, but thank goodness for small miracles. Thanks to you, my Sunday has included an unexpected addition that makes for a very special day indeed.
I have not only clicked here, there, up, down and around your blog, but I have done the same with every link on your Blogroll.
Isn’t it funny/wonderful how links that transcend distance bring a closeness to our lives that feel like warm fires on the coldest of days.
Thanks for spreading the light and the warmth! I look forward to more.
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Thank you for reading my blog. I’m so glad I found yours too and looking forward to reading more.
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That poem is so… so… so accurate that it hurts.
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I feel exactly the same way.
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Isn’t it amazing the wonderful community of kindred spirits that we can find through blogging! I look forward to following you……
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Thank you. Looking forward to reading more from you.
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You’re right the poem is chilling – cuts to the heart – If you look into your mother’s eyes you can see the fear – I know I use to see it with my mother – she would act like everything was alright – denial- and then I would look deep into her eyes, the eyes are the channel to the soul – she was terrified.
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It’s a sad, sad journey. I try to enjoy the lucid moments for what they are and look for pleasure in little things.
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