Christine Wei/The Globe and Mail
First Person is a daily personal piece submitted by readers. Have a story to tell? See our guidelines at tgam.ca/essayguide.
I am a grumpy wife of a man with Parkinson’s disease. In my 2023 First Person essay, I was cheery about coping with his disease. Well, I’ve moved past cheery to angry and frustrated and just wanting to run away.
I know that many people are dealing with more difficult challenges than we are but I don’t have the energy to care about them right now. I care about us. I am a writer so I spend my time signing up for writer’s retreats that I will later have to cancel because I can’t leave him alone.
Nine months after I wrote that first piece, Stewart started confusing his medications and became listless and disinterested in eating or walking. Then, all the wheels fell off. Stewart’s short-term memory was shot. He’d forget which pills he had taken or whether he had taken them at all. I could barely remember myself. Memory-loss was contagious.
Emotional whiplash is what I experienced next. One minute he was himself, making clever comments and the next he was clutching me to keep from falling. His mighty 6-foot-2 frame was now skeletal and stooped. I couldn’t get used to this version of him, this evil twin who was slow and grumpy and snippy. But then that was me, too.
Coping with my husband’s Parkinson’s diagnosis means enjoying one day at a time
My husband was always a calm, accepting, non-judgmental human with endless patience. Then, he became easily annoyed, just like me. We knew we were both acting out anger and frustration with the incurable, hereditary disease over which we had no control.
One of my friends observed that, like her, I didn’t have the most apt personality for a caregiver. I laughed because she was correct. I was a do-it-now person and Stewart was the thinker-analyzer. That worked well for decades as we embraced worldly adventures on five continents by motorcycling, white-water rafting, kayaking and hiking. There were days when I just wanted to be out in the world on another adventure. I felt like I wasn’t done yet. I was angry that our lives had turned upside-down.
We did not anticipate aging and raging in our retirement years. I watched us both cycle through the seven stages of grief; he was in denial insisting some days he could take care of himself, while I alternated between anger and apathy. I felt guilty for being angry with him and broke all the rules for how to behave with a person with Parkinson’s. But I couldn’t help it and needed to give myself a break.
We hired a personal support worker to help Stewart and give me a pause from the 24-7 caregiving. I was exhausted from lack of sleep since Stewart woke me six or seven times a night to help him find the toilet, remind him what to do next and why.
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This all sounds very whiny, I know. So, to the readers who kindly offered their support for my earlier article, I want to say thank you. It is reassuring to know that our situation resonates with you. And to the kind woman who wrote that she has been living with her own husband’s Parkinson’s disease for five years and only recently reached acceptance, thank you for being so honest. I think about you every day.
Life is an adventure and we can’t always choose how it will go. Some days I yell and swear in as many languages as I can muster. Then I hide under a blanket or close my eyes to disappear because it worked in childhood. Mostly, I concentrate on breathing, which staves off the anxiety for a while. I realize that my anger is intense because my love is too.
Stewart and I still hold hands and hug. Somewhere in our minds, we remember our deep passion for extreme adventure and each other. A tiny spark sizzles then fizzles.
In May, we moved Stewart. By then, he had been diagnosed with Lewy Body Dementia. Magically, there was a vacancy in a nearby retirement home with memory-care services. I thank the universe that I don’t have to travel miles to visit him. Now I can return to being Stewart’s loving spouse instead of an angry, ranting, unpaid, underslept care-worker.
Cleaning after my mother’s death taught me about what can’t be replaced
There are days when Stewart spews verbal abuse at me, as his evil twin takes over his mind and his face is a mask of confusion. Yes, he is the one with the disease and the dementia but the emotional toll on the caregiver cannot be underestimated.
Now on a new medication, Stewart is able to think more clearly and remember names and faces. He gets confused but he is calmer and more like himself in conversation.
When I take Stewart’s hand, I try to remember that deep inside each of us, under the nagging, the aging and the raging is the person we each fell in love with years ago. Parkinson’s disease is not fatal but Lewy Body Dementia destroys brain cells until they are all gone. Till death do us part. What we learned is that we are grateful for finding each other in midlife, for our magical years together, for our many adventures and for our loving families.
We smile and squeeze each other’s hand.
Doley Henderson lives in Toronto.
