A sadness plays at the edges of my heart. It is a kind of grief. I am watching my Dad struggle with the frustrating effects of Lewy Body Dementia. He is always on my mind.
Last week he landed in hospital up north. A recent bout of pneumonia, coupled with medication changes and upheaval in his routine, resulted in behaviour which was difficult to manage at home. The hospital is not the best place for him, but it will be his temporary home until he is stable and we can figure out with the help of the professionals, which long term care facility is best.
I grieve for the fact that his world has become so small. I don’t want that for him. I want to be like a Marvel superhero and stop the walls from closing in. He is limited in what he can see because travel, even by car, is difficult. But it’s not just the physical parameters of his life which are shrinking. He can no longer read books. That mental stimulation has been stolen from him. Dad was a bookstore owner and he read voraciously all his life. This seems a cruel joke. He’s tried books on tape, but so far they haven’t proved a good substitute. His routine is full of yawning holes; my schedule seems ridiculously full in comparison and I feel stirrings of guilt when he asks me what I’ve been up to.
Lewy Body Dementia, is a wily adversary. Tiny, abnormal round structures- lewy bodies- grow and cluster in the regions of the brain that control movement and certain kinds of thinking. In order to read, many circuits of the brain must work together. For Dad, the areas that are impaired in his brain, mean that the processing of a written sentence is exhausting.
The disease is progressive and incurable, but unlike Alzheimers, some short term memory remains intact. And cognition can fluctuate so that on certain days if you were to meet him for the first time you might not realize he had dementia. For the last year, we talked a lot about my writing. He was supportive and encouraging. I knew he was glad I was finally putting writing front and centre in my life. But I fear that with the recent setback, those conversations won’t happen anymore.
Dad had writing ambitions of his own. When first diagnosed he made notes for a book about dementia from the patient’s point of view. He was still reading widely at that point and he devoured anything he could find on the subject. What was disappointing to him was that the focus tended to be on the caregiver; he wanted to address that.
He wrote pieces about the family history too. I was thrilled he was doing this and when the physical act of writing became difficult because of tremors in his hand we collaborated. He talked and I recorded. I have a file on my laptop, full of Dad’s recollections; stories waiting to be told.
I feel a weight of obligation now, to write for my Dad. It is not an onerous thing, this weight; I carry it gladly. Writing tempers the grief. But my energy ebbs and flows and during the low times I can’t think clearly enough to put coherent sentences down on the page. I push away the feeling that time is running out and I haven’t done enough to make my Dad proud.
Jackie Kay, Scottish writer of fiction, non-fiction and poetry has said that the “…acknowledgment of the closeness of life to death…” fuelled her desire to write. I feel an urge to create, to push back against the inevitability of Dad’s dementia. And have I drawn an unlucky ticket in the genetic lottery? My paternal aunt had Lewy Body and my paternal grandmother developed Alzheimers.
But life is unpredictable. And most days I wake up and decide that the only antidote for uncertainty and sadness is to write. To waste no time circling around what I want to say, but to strip away the unnecessary words and write the truth, bare and simple. I am pushing myself.
I took advantage of a month of free writing prompts from the site, Story is a State of Mind, managed by author Sarah Selecky. Every day a prompt comes to my inbox and I am instructed to free write for ten minutes. I don’t feel inspired by lots of the prompts but I write anyway. One of them has become a story and if I can push through and finish and edit this story I can enter it in the Little Bird writing contest. Deadline is May 27, with the entries being judged by Lisa Moore.
The prompt was: Write a scene that uses the word unicorn. Someone has to say, “I thought so.” I am enjoying working with a mythical beauty like the unicorn. I feel free to imagine possibilities that are outside the realm of the harsh reality of Dad and dementia. I told him about the story a few weeks ago. I need to finish it, not for him, because I don’t think he will remember our conversation, but for me. Whatever happens, my writing life needs to continue and to grow.
Here is a list of other mythical creatures to inspire you to imagine possiblities. Choose one or more, and write for ten minutes. Keep your pen moving and see where the writing takes you:
*** Dragon- giant, flying, fire-breathing lizard who often guards treasure
*** Gnome- a small creature, human-like,who lives and moves beneath the earth
*** Manticore- has a lion’s body and a human’s head
*** Mermaid- sea creature with the head and torso of a woman and the tail of a fish
*** Phoenix- a golden bird who, at the end of his life, burst into flames only to be reborn again
*** Sylph- an invisible, fairy-like being dedicated to the element of air
Til next time, keep writing.