Tuesday, July 16, 2024

Alzheimer’s Activist Caron Leid Provides Comfort To Others And Shares Her Journey

Caron Leid is a doer. And when the going gets tough, she does even more.

For the past 19 years, much of what Leid has done has been focused on helping her mother, diagnosed with Alzheimer’s when she was 57, and helping caregivers like herself understand the disease and its impact on individuals, families and futures.

“I might be an anomaly,” says Leid with a hint of chagrin. “I dive into things. I try to push myself out of my comfort zone.”

Only 30 when her mom was diagnosed, Leid is blunt about the challenges she has faced as a caregiver. She speaks openly and ardently about the struggle to care for her mother, who lost the ability to speak 14 years ago and who for the past three years has been bedridden in the final stage of her fight with the disease that today affects 747,000 Canadians and their families. (Update: Leid’s mother died in spring 2020.)

Leid is also forthright about the toll caregiving has taken on her and her family: It has been a key factor in her divorce and depression. It has led her to seek out grief counselling as well as support for the compassion fatigue she suffers as a caregiver.

“You’re constantly feeling guilty,” says Leid. “You recognize that it’s not the person’s fault, but it is so challenging.”

This personal, often overwhelming, journey has also convinced Leid to reach out to give back. The Brampton, ON resident is currently completing her PhD in education at Aspen University in Colorado, after completing her MBA there, while looking after her mother at home and raising a young son. “I’m working backwards,” says Leid. “I’m working on my retirement job with my PhD.”

That retirement job will involve counselling, something Leid does today to help caregivers like herself try to find balance and comfort in their lives. Giving back to those who give their time, resources and love is now second nature to Leid and defines her life as a doer.

Among her many roles, Leid is a vice-chair of the Older Adult and Caregiver Advisory Committee at AGE-WELL, Canada’s technology and aging network. The committee directly advises the network’s scientific directors.

In 2014, she published a book, Alzheimer’s – What They Forget to Tell You. Chapter 1 opens with these words:

Challenges are a part of life. I was raised to always have a plan and a contingency plan just in case the plan did not work. My father always told me not to “put your eggs in one basket.” However, there was no contingency plan for what was about to happen in my life. This wasn’t even part of the original plan, and there was no warning or preparation for what happened. It just did, and that was that: you could either embrace it or not, the choice was yours.

The book, subtitled A Personal Journey, traces the British-born native’s life for most of the past two decades. It started as a personal journal – a place for Leid to write her thoughts and feelings when the world closed in, when questions needed to be answered and resources were discovered. Leid called that process “cathartic.” Thirteen years later, her catharsis became her first manuscript. In January, she published a revised version of the now 320-page book.

There is now a second book: Dementia and the Brain – What They Forget to Tell You. Leid says her latest effort is a “textbook,” jam-packed with information and insight to help caregivers understand what is happening to their loved ones and themselves.

Expect more books to hit store shelves and online outlets. Leid anticipates the “What They Forget to Tell You” books will become a series addressing issues of interest and importance to caregivers and those they care for. The next book in the series, she says, will focus on compassion fatigue.

More than a year ago Leid started a weekly podcast, unscripted and unedited. There are now more than 55 episodes, some with upwards of 40,000 views on Facebook (watch it live or download it from iTunes). A recent episode explores the steps to take when there is a diagnosis of Alzheimer’s and the consequences when a power of attorney is not put into place. The first podcast, on October 11, 2017, started at the beginning, with what has shaped and shifted Leid’s life for the past 19 years: Being a caregiver.

in 2050, it is projected that dementia will affect 135.5 million people around the world.

There’s more doing. Last year, Leid delivered the keynote address at the 27th International Conference on Psychiatry and Psychology Health in Paris. Not surprisingly, Leid started her talk without mincing words. She pointed out that although Alzheimer’s disease has been known for more than 100 years, we are still no further ahead in curing it. The average person, she said, doesn’t know much about it. Yet, in 2050, it is projected that dementia will affect 135.5 million people around the world.

“It means that if you do not have dementia, you will be caring for someone who has it,” Leid told those in attendance at the global event. She was granted funding through the AGE-WELL CONNECT Program to attend the conference.

Most recently Leid has started her own charity for caregivers, The Reinvent and Restore Foundation. Her aspirations are ambitious – one might say outside her comfort zone – and undoubtedly attainable. The goal, Leid says, is to provide caregivers with all the resources she would have liked to have had when she started on this journey with her mother. This includes one-on-one counselling, meditation and massage services, career supports, workshops and more.

Caron Leid is not done doing. She made that abundantly clear in an article she wrote recently. “I will not rest,” she says, “until there is a cure and people do not have to go through what I have.”

Caregiver Resources 

Alzheimer Society of Canada: Alzheimer Societies offer support, information and education in communities across Canada. 

Baycrest: Online resources for people with dementia and caregivers, including coping strategies and support groups. 

The Change Foundation: Health policy think tank has information for carers, including services and resources. 

Originally published in Issue 4 of YouAreUNLTD magazine, 2019

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donalee Moulton
donalee Moulton
donalee Moulton is a professional writer based in Halifax. She enjoys nothing more than falling asleep as the salt air from the Atlantic Ocean wafts through an open window.