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An elder care roadmap & observations from the journey
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Where Dementia Takes Me

 

 

Telling my mother’s story has taken me places I didn’t expect to go. Last Thursday, I travelled by train with two executive directors of local Alzheimer Society chapters to Queen’s Park where we joined other Alzheimer advocates from across Ontario.

I was fortunate enough to find myself face to face for thirty minutes with my M.P.P. Rob Milligan, talking about my mother and our dementia-journey.

The Alzheimer Society of Ontario unveiled a five-point plan called FocusON dementia that would improve the quality of care for Canadians with dementia while staying within the government’s budget guidelines.

In the past few months I have been invited to be part of several initiatives where I was given the opportunity to tell our story. This always leaves me shaking my head in wonder since for so many months I was ignored, pushed aside and forgotten.

Suddenly, I am finding people really do care.

This fall I began serving on the Behavioural Support Ontario guiding coalition as a “consumer” invited to share my observations and life experience. Since then, I have been invited to share specifics of our story – the good the bad and the ugly – to healthcare professionals, geriatric psychiatrists (including the team that served my mother), fellow caregivers and now my Member of Parliament. My mother would be proud if she didn’t have dementia.

Mom was a gifted public speaker and story teller. I think if she were in my shoes she’d be doing exactly the same thing I am. My father was a lay-pastor of a small-town southwestern Ontario church, but Mom could hold her own behind the pulpit. It is one of the reasons it makes me so sad to see her lose her ability to converse clearly.

But, another thing happens at these events that lift my spirits is meeting other caregivers. A beautiful woman from Toronto named Judy Southon (look for her dementia-focused Facebook page) got up to share her story. Her husband, Vic, recently passed away after suffering the effects of dementia. By the time she had spoken her first sentence, I was wiping tears from my eyes. When other caregivers share their story, something special happens. It is as if someone is telling your story – just changing the names and dates. After Judy’s talk, we embraced and swapped stories. I left with the feeling I had known her for years.

Some people wonder why I write My Mother’s Caregiver, hanging our private laundry out for the world to see. It is because of people like Judy. Dementia is such a sinister opponent. It hits people from every class, religion, gender and financial status. It sucks the life, dignity and vitality out of people and cuts deep into the hearts of everyone who loves them. This doesn’t just happen once either – it happens over a long period of time. A little bit of dying happens daily.

Caregivers need each other! Coming together makes us stronger. Coming together makes us feel heard and known. We are not alone. YOU are not alone.

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