Caron Leid kept a personal journal describing her struggle with “the system,” while caring for her mother with Alzheimer’s.
Now published, that memoir lays out her feelings, her struggles and the questions along the way, with great candor.
When she was expecting her first and only child, Leid’s mother called regularly. “When is the baby going to come?” she’d ask week after week. Leid assumed the repetitive questioning was a sign of excitement.
A few months later, when the baby was born, her mother, Marlene, travelled to Canada from her home in Trinidad to help care for her new grandson. She fed, bathed and dressed the baby without difficulty. But Leid began to worry when the former registered nurse, then 57, forgot to mix her grandson’s formula, giving him the full, concentrated amount.
It seemed a strange mistake for someone who’d worked in healthcare for so long.
“The worst thing was that when she was confronted about the mistake, she seemed confused,” Leid writes in her recently launched book, Alzheimer’s—What They Forget to Tell You.
She took her mother to a doctor, who ran a short mental exam. Shortly after, he turned towards Marlene and announced simply: “You have Alzheimer’s.”
That was 14 years ago. Today, 44-year-old Leid cares for her mom at her home in Brampton, Ont. She details the past 14 years, and the struggles and frustrations she faced while caregiving, in the new book.
For instance, she worked with nearly 10 hired caregivers before she found someone permanent to work with her mother. Some left to pursue other jobs, while others weren’t competent—one continuously allowed Leid’s mother to have incontinent episodes, something that was rare for Marlene.
You’re just thrust into this world. … I was finding out things by fluke.
Leid is a fortress in a crisp white pantsuit. Her voice has a soft, child-like lilt, but her words are sharp. She uses them to tell her personal tale, which was inspired by the barriers the author faced to finding the resources and support she needed. Marlene’s progression was atypical—she maintained full dexterity for a long time, for example.
Leid had trouble finding answers to many of her questions about the disease, what to expect, and where to go for help. While some information was available online, most of it was spread out on multiple websites.
“You’re just thrust into this world,” she says. “I felt like I was constantly researching and still never knowing who to call. I was finding out things by fluke.”
“I would love to say there was a wealth of resources, but then there wouldn’t be a book. The reality is I wrote the book not just for my mum. It was to say, ‘This is what’s really happening.’”
As a caregiver attempting to hold down a job while keeping her mother at home, Leid had difficulty navigating the tax system, managing her mom’s medication and accessing free caregiver hours through healthcare.
Journaling became a way for Leid to vent her anger, and at the end of particularly difficult days, she’d sit and hammer at her keyboard, documenting her experience. Each time she found helpful information, she’d archive it in her journal.
Alzheimer’s—What They Forget to Tell You is an edited version of the record she kept. In it, Leid holds nothing back, speaking frankly about things other memoirs skirt around: her anxiety and guilt, her isolation and the anger she sometimes feels towards her mother. The book also includes her tips on nutrition, finances and finding a professional caregiver.
I wrote the book not just for my mum. It was to say, This is what’s really happening.
In the book, Leid explains in detail how she accessed Canada’s live-in caregiver program and where she looked for potential hires. She also explains some of the financial aspects of the program, such as how to file income taxes for hired caregivers, and how to claim disability tax credits.
It took Leid years of researching to learn about the care programs her mother uses. She discovered many of them through casual conversations with friends. Her memoir explains how to access groups like the Community Care and Access Centre , a provincial organization that provides services such as nursing, occupational therapy, nutritional counselling and referrals to day programs.
Since Marlene’s diagnosis, Leid has opened a café and day spa in Brampton, and completed her MBA, on top of caregiving and raising her son. For her, remaining busy was the best way to cope.
“I don’t remember doing all that stuff,” she says. “You just do it. But then you look back and think, ‘Oh my God. How am I still here?’”
Leid hopes that sharing her experience will help others to cope. At the very least, she’d like for caregivers to continue sharing their experiences, to bolster public advocacy.
“People can pretend Alzheimer’s doesn’t exist,” she says, “but we need to try to be proactive. It’s not going to go away.”
To order the book, click here.
Megan Jones is a Toronto-based writer and editor
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