When mom was diagnosed with dementia, we had a blueprint for her care written by her

This First Person column is the experience of Crystal MacCormac, who  lives in Charlottetown. For more information about CBC’s First Person stories, please see the FAQ.

My mother walks into my apartment in P.E.I. for the first time after 11 years of living in Ontario. She smiles brightly as she hugs me and looks around. 

Her eyes fall upon a photo on my wall: a picture of her at two years old, sitting in front of a birthday cake.

“Oh wow. Look, that’s me!” she says, walking closer for a better look.

Fast forward a couple of days to her second visit. Mom looks around, another bright smile on her lips.

“Oh wow. Look, that’s me!” 

It happens again a week later.

My spidey senses started to tingle and fear began to seep in.  

“Well, that’s not a good sign,” I thought.

I paid closer attention after that — watching, listening to everything mom did and said. It was 2020, so I spent more time with her, thanks to the rules imposed by the pandemic. Mom became one of the 10 people in my social bubble during lockdown, and with so few distractions, I was able to put most of my focus into my mom and her declining mental capacity.

My younger sister, who’d lived with mom for a long time, noticed changes, too. 

By 2024, mom’s memory continued to decline, as did other things. 

She was 65 when she was diagnosed so if it were just the pain in her hip, the digestion issues or the decline in her eyesight, we may not have raised the alarm. But it all happened at once, forcing us to take notice.

Ultimately, mom was diagnosed with vascular dementia. The diagnosis took almost a year as her swift decline continued.

That’s when our lives took a detour onto an unexpected and bumpy road. 

But luckily, we knew what to do because mom had already shown us. When her own mother — my grandmother — suffered an unrelated physical and cognitive decline, my mother and the rest of our family stepped up to care for Nanny for the following five years.

My mom moved into her parents home to help. She had an inside look at the struggles that came up during that time.

A couple years after losing Nanny, mom sat me and my two siblings down to talk to us. She told us what she wanted, who she wanted advocating for her, under what circumstances we were to transition her into a nursing home, who was to arrange her funeral and at what point to end care or sign a “do not resuscitate” order.

I’m grateful we didn’t have to make these decisions on the fly while juggling mom’s care and our own emotions. There is so much to learn and so much information coming in, but knowing our roles made the process so much easier.

But it left me wondering: how would we have survived if we hadn’t made plans in advance? I don’t know how I would have learned all the medical jargon while also trying to connect with the right people and agencies. Weaving through all the twists and turns would have taken my attention away from mom and her care.

Social services gave us terrific guidance. We also relied on P.E.I.’s home care program, which helped us obtain medical supplies and respite care, and connected us with medical professionals in the community to help mom at home when she was less mobile. 

The Alzheimer’s Society was another lifeline. The counselling I got through them was geared toward my own mental health as a caregiver.

Because even with our blueprint, parenting my parent is so hard. The dynamic switch came with fear and so much sadness I sometimes felt like I was drowning. 

The hardest is when what mom wants now doesn’t match what mom before the disease wanted.

When I told her she had to move into a nursing home, her reaction was heartbreaking.

Nanny lived at home until her death and I would have done the same for mom. But I knew I was doing what mom had wanted. She made it clear years earlier that under no circumstances were we to go against her wishes, but it took everything in me to follow through.

I’m grateful I had the support that allowed me to be vulnerable, to cry, to say the hard things out loud and to find the strength to do the next hard thing.

Now, I can cherish my time with mom because I’m confident in the decisions we made together as a family. We don’t have to guess what she would have wanted or argue amongst ourselves. 

But it’s still hard. Mom is no longer mom. She is still here in body, but not cognizant of what is best for her. She has no control over her own life anymore except through the decisions she made earlier.

I love my mother, and all I want is for her to be happy and to know she is safe. Thanks to the blueprint, I am able to advocate for her with determination, with gusto and without guilt — knowing that I’m doing what I promised her I would do. 

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