By Allene Symons, Long Beach, California, US
We forget we are vulnerable, too, while caring for a loved one with dementia. This happened after three years of home care for my husband, Alan, when I was told I had breast cancer.
This is one of the challenges I recount in the memoir of our journey with dementia, Love in a Time of Caterpillars. At the same time, we tended a home butterfly garden, a source of joy, hope and much-needed distraction.
The caregiving challenges and how I faced them range widely in this memoir, such as persuading him to stop driving, and protecting him from computer and financial scams; preserving his independence, engagement and dignity, along with facing unexpected end-of-life decisions. In each case, I show how I work around the hurdles of his dementia.
For example, back to my surprise medical diagnosis, I had to schedule my medical appointments, but each week I only had one half-day of home help. I soon learned how nearly impossible it was to book spot-caregiving. It meant bringing along Alan, who lately saw me as a stranger and would ask, “Who are you?” when we were in our car, in our home, at night in our bedroom.
Once we arrived in a medical waiting room, he would threaten to walk home, or imagine seated people trying to steal his possessions. Bringing him with me brought both of us nearly to melt down.
I once believed I could manage with just a little backup, then along came my own crisis and I desperately needed more. That led me to senior daycare, a secure facility with dementia-care trained staff that helped me bridge the calendar until my stepdaughter arrived for my surgery and recovery.
Alan didn’t recognize her part of that week, which turned the page. She and I agreed it was time for placement in the memory care facility where I had made advanced arrangements.
Except along came the Covid-19 pandemic, and long-term care facilities refused to admit new patients. For the next several months, my bewildered and angry husband upended contents of the house and tried to escape. When he did, I would locate him with the Find My Friend app on the iPhone that, thankfully, he wore clipped on his belt. Once we were back he would claim, “This isn’t my home.”
I saw no end to our high-conflict, high-stress pandemic confinement. I had recently withstood breast cancer surgery and now I was a sleep-deprived wreck. How could I follow the advice that a caregiver must take care of herself to care for her loved one?
Then came glad tidings: the memory care facility was ready to admit new residents.
Soon he and I would both be safe, at last.
Purchase Love in a Time of Caterpillars
In this podcast you will:
- Discover the unexpected connection between butterfly gardening and dementia care.
- Find out how one caregiver found joy and solace in nature therapy.
- Learn effective strategies for managing technology with dementia patients.
- Understand the unique impact of COVID-19 on dementia care and how to navigate it.
- Explore the compassionate use of loving lies in dementia caregiving.
- Embrace the importance of outdoor activities in improving the emotional well-being of dementia patients.
Quote
“The extreme flexibility we need when we’re caregivers who are a loved one with dementia is core to the journey.” – Allene Symons
About Allene Symons
Allene Symons is a journalist, editor, and the author of two other nonfiction books and one novel. She has worked in book and magazine publishing and as a college instructor. Born and raised in California, she worked for a decade in New York and now lives in Long Beach, Calif.
Connect with Allene
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