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“It’s different when they’re older, in a way. For my husband to have dementia at age 62…it changes everything.”

The first of the symptoms of her husband’s Frontotemporal dementia (FTD) seem more obvious in hindsight. Even before the diagnosis, he would prefer to spend time alone, often in his study where he worked as an independent consultant, or spending long periods alone lost in a book. That he gradually stopped reading didn’t raise an alarm at the time, but for Dede, this would be only the first of many changes that would impact every aspect of her and her husband’s life.

Initially, their family doctor ran through some memory-related diagnostics, which Dede’s husband managed to do very well in due largely to his mathematical nature. As a trained accountant, numbers had always come easily to him. He left his doctor’s with a prescription for anti-depressants. A year later, however, things only seemed to be getting worse. It wasn’t until he started to get violent with Dede that she suspected something was very wrong.

“Eventually, I insisted we go to a marriage counsellor. During our second session, it was our psychologist who suggested to my husband that he go to the doctor and get a referral to see a neurologist.” It was a staggering 18 months before Dede and her husband got a diagnosis.

“The first thing that I did when I learned of the diagnosis is to call the Alzheimer Society. Fortunately, the emergency intake person was available, and so I went in immediately to see her. I spent an hour and a half crying on her shoulder, both out of relief to talk to someone and sadness about my husband’s diagnosis at age 63.”

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“I’ve got my mind around the fact that my husband and I won’t have a social life together, and that we can no longer travel together. Our normal life is gone.” Being a care partner for her partner has led Dede through the medical system in an attempt to find adequate support for both her husband and herself. Her experience has been punctuated by closed doors, as her husband’s condition is not yet bad enough to warrant the support of the CCAC in her region. Like many caregivers, Dede is feeling the weight of her husband’s diagnosis.

“I’m exhausted all the time. Scratch the surface and I am physically, emotionally, and mentally weary and I’m only at the beginning of the journey. I’m scared and frustrated. On paper, what looks like a very robust support system is only available if you’re in crisis. The waiting list at the worst possible nursing home here is two years. There’s way too much burden put on untrained caregivers.”

While Dede has been able to find some support for herself and her husband through the Alzheimer Society, both through programs and counselling services, she recognizes that there are many possibilities to improve the experience of people going through what she and her husband are going through.

“There’s a disconnect between the people who run our provincial and national governments, and care partners for people living with dementia. It’s a hard thing to get unless you experience it.”