Cathy's Story

Please note - Cathy is a pseudonym, to respect the author's wish for privacy.

My story is about my parents. Both my parents are immigrants and naturalized Canadians, but have been living and working in BC for decades.

As they were aging and into their 80s, Dad’s personality began to change and he was not doing well – not taking care of himself, which was rare for him. At the same time, Mom started to show signs of dementia, but she was not telling us about all of the signs.

We were helping them informally for a few years, and it was only in their last few years of life that I was made aware of Representation Agreements and Enduring Powers of Attorney – all the important documents that Nidus has been helpful about providing information and education on.

How I found out was this – one day, Dad had to be admitted to emergency after he had a fall. He was in hospital for over a month. We were assigned a social worker, who wanted to organize a family meeting to provide updates and discuss Dad’s case.

The doctors and nurses mentioned that Mom would be first in the pecking order to make health care decisions for Dad if needed, under the default rules for Temporary Substitute Decision Makers because there was no Representation Agreement in place at the time.

At this point in time, it had been a few years since I had begun expressing concern about Mom’s possible dementia. She also had a referral to meet a gerontologist for an assessment. Given the concerns, the social worker referred me to a dementia helpline where I was referred to Nidus and I learned about representation agreements.

When my Dad was to be transferred to a long-term care facility, I ran into the issue of accessing his file at the hospital where he had been staying, which I wanted for continuity in his care. I wanted his new medical staff to know whether Dad had already had certain tests, drugs, or x-rays.

I was referred up the chain at record management and the manager explained that she could not give me access to his files because I didn’t have a Representation Agreement.

Even though he may have been at the very early stages of dementia, he was able to make a Section 9 Representation Agreement while he was in long term care. When that was completed, we were able to get access to records and test results to stay on top of his care.

If my parents had the Representation Agreement from the beginning, it would have been much less stressful dealing with the medical professionals, because I understand they need to establish who officially speaks for Dad when he can’t speak for himself.

Most of the time he was perfectly fine, but there are moments when it was important – when he was temporarily incapacitated – he needed someone to step in for him. And as English is not his first language, there was an extra layer of help I was able to provide for him as a representative.

In our case, you can see why the default priority list for Temporary Substitute Decision Makers was not enough, and the Representation Agreement was helpful.

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