The day before Mother’s Day, Qualicum Beach author Janet Dunnett will be launching her first book, which follows her and her twin sister’s caregiving journey for their two parents at the end of their lives.
In some ways, The Dwindling is an unremarkable story, Dunnett told the NEWS — not something an author tends to say of their work.
“This story isn’t special,” she said. “But what makes it important is that it’s not special. Because everybody’s got that story,” or everyone will, she said.
“We all have old mothers… we are all in this.”
With her book launch taking place Saturday, May 13 at the Courtyard Café and Patio in Qualicum Beach, Dunnett said she’s hoping her book will empower family-member caregivers, and get more and more people talking about palliative and end-of-life care as the senior population continues to grow.
After all, end-of-life care is something many people will go through — even twice: with their own parents, and then themselves.
It was in speaking of her own mother that Dunnett’s mother broke her concerns to Dunnett, and started her on this journey.
“On the first day of the Millennium, it happened,” said Dunnett. “I was in Ottawa with my mother, visiting, and she happened to be watching the Millennium events on TV. It was the first time they did a really, really big, around-the-world thing, and when it got to the little old ladies dancing in Africa, she said, ‘Those old gals have more zip than me.’
“It was an admission that she was coming to a point in her life, and it was a long conversation after that, that day, which had a lot of sadness in it, because she felt so guilty about how she had to make choices about being in her career and her mother at the end of her life. And the net result of that was that she had carried, at that point, for more than 10 years, this deep sadness and guilt for what she hadn’t been able to do.”
After a sleepless night, Dunnett and her twin sister made a New Year’s resolution to do whatever they had to for their parents together. Of course, they didn’t really know what that meant, she said.
Then they went through a few more years where things were pretty good – life continued along.
With her twin living near her parents in Calgary, and Dunnett helping from Qualicum Beach or flying in, they would help change lightbulbs, work remotes, do taxes, find an address, drive to doctor’s appointments.
“And then this thing called the dwindling started,” said Dunnett.
That’s a health care term, she said, having discovered the word “dwindler” on her mother’s chart during a trip to the emergency room.
Dunnett’s first reaction was to be pissed off. “It was an awful word, to me,” she said. But then she found it’s used as shorthand for a person who’s of an age where health care is about treating symptoms and making the patient comfortable, but not necessarily about curing them.
As her and her sisters’ days became more and more consumed by their parents’ care needs, things eventually changed in a big way.
“For my mother it was a fall,” said Dunnett. “And for my father it was to realize that he had dementia.”
From then on, things got more intense, and caring for her parents wasn’t just about driving them to appointments. It was about being an advocate for them as well.
With Dunnett’s mother, that meant “kidnapping” her from her own long-term care centre.
Dunnett and her sister didn’t want their mother to die in a long-term care centre, so they took her home. Which is not allowed, she said, but they did it anyway, until Dunnett broke down.
“(Support workers) came and said, ‘we are going to put the blood pressure cuff on you today,’” she recalls. Then her mother was put in a hospice. The problem there was she took too long to die, and so lost her spot.
“What they would say to us is, ‘aren’t you lucky? Your parent has somehow sprung back and she’s not actively dying anymore,’” said Dunnett.
“So the system is pushing to get rid of her, we are pushing to keep her, and we are going through all of the advocacy that we can think of, threatening to go public… And we succeeded almost to the end of her life before they put her in a long-term care centre, but in a pretty good one. And then she died.”
Dunnett’s father went much quicker, “the way you’re supposed to die,” she said.
But that was a battle, too, requiring an ombudsman to convince his care home to take him when his condition became worse.
“There’s all sorts of cracks in the system, and disconnects and things that you don’t encounter until you encounter them,” said Dunnett.
But her story isn’t much different than anyone else’s, she said.
“Palliative care is terrible right now. It’s more a vision than a reality.”
After getting some distance from the experience, Dunnett decided to write out the story. It took four years to do, but she’s hoping the book gets others to share their experiences, and encourage them to see how important the part they play is, even if health care professionals don’t.
And it doesn’t have to be a negative experience. It wasn’t for Dunnett, she said.
It brought her family closer together — re-introduced siblings who hadn’t known each other as adults. And it proved a love between herself and her parents she wasn’t sure was there.
“It was something that I would do again,” she said. “I called it the hardest job I ever loved.”
Dunnett will be launching her book on Saturday, May 13 at the Courtyard Café and Patio between 2:30 p.m. and 4:30 p.m.