'You can't pour from an empty cup': Former caregiver says families need better mental health support

CBC's series Concerning Care takes a closer look at home and respite care in Newfoundland and Labrador, which has Canada's oldest population. It focuses on a shortage of workers, the emotional and financial toll of loved ones providing care to family members, and issues that home-care workers themselves face.

Ari Rochester was in St. John's for a visit in the summer of 2016 when their father voiced concerns about his wife's health.

While the official diagnosis came about six months later, Rochester — who uses the pronouns "they" and "them" — said Michael already knew that his wife, Elizabeth, was in the early stages of Alzheimer's disease.

Rochester spent the next two weeks researching the family's options but quickly noticed their father struggled with all of them.

"I said, 'Dad, you don't seem happy with any of this information. I know this isn't a good situation, but if you had your choice, what would you want?'" said Rochester.

He wanted Rochester — who was living in the U.K. at the time — to move back home and be Elizabeth's caregiver. Rochester agreed.

"I had … been thinking a lot about them being in their twilight years and thinking about things like, I don't want to have any regrets," said Rochester. "I want to interact with them with a spirit of loving kindness. Because we argued a lot in our lives."

Rochester wanted to keep their mother at home for as long as possible — Elizabeth had done the same for her own mother, who had also had Alzheimer's.

"My mother would have told you at that time it was very difficult but also she learned a lot and it was rewarding," said Rochester.

Alzheimer's disease is the most common form of dementia, according to the Alzheimer Society, with about 60 to 80 per cent of all dementia diagnoses being Alzheimer's.

It is a progressive disease that destroys brain cells, affecting a person's linguistic, cognitive and physical abilities, as well as their mood and personality.

'I have no idea really how I managed'

In the summer of 2018, Michael had to stay in the hospital repeatedly over two months — and Rochester first started feeling "massively overwhelmed".

They availed of more home care, with no issues — but then, the COVID-19 pandemic hit. For about seven months, Rochester and their father were on their own.

"I have no idea really how I managed," said Rochester. "Eventually, one of the care workers came back, and thank goodness."

In May 2021, Rochester started the application process for long-term care.

"You're told not to put the name on the wait list until you're ready for them to go in," said Rochester. "But by the time you're ready for them to go in, then between that time and crisis is often shorter than the wait."

After receiving no response to the application, they inquired in October 2021 about Elizabeth's position on the wait list. A missing chest X-ray was holding up the application, according to Rochester. 

That X-ray, said Rochester, had been done in early July — and was located the same day Rochester called to ask about the delay.

But in the months that had gone by, Elizabeth had deteriorated. Personal care especially had become a struggle, as Elizabeth showed signs of aggressiveness, anger and frustration.

Rochester found providing care so difficult they started going to therapy, which they paid for out of pocket, since Eastern Health had pointed them to only short-term solutions, like Doorways — single-session drop-in counselling for mental health.

"I needed some consistency and predictability because there is no consistency and predictability in your day-to-day life when you're caring for someone with dementia," said Rochester.

Their mental health had suffered while the family was waiting for long-term care placement.

"You're in a family relationship and so it's very complicated by your family history and how you know they would want to be treated, and how you have wanted to treat them in this," said Rochester.

"There got to be a point where I was so exhausted and distressed that being able to feel loving kindness was not accessible."

Rochester struggled with guilt and self-condemnation. When they felt that shift toward feeling nauseous in their mother's presence, their family doctor ordered Rochester to stop giving care.

Four days later, Michael had to call an ambulance.  There was no physical emergency with Elizabeth, but he and Rochester were so overwhelmed by the stress and demands of providing care they didn't know what else to do. 

Taking care of parents — but at what cost? 

The family is not alone.

According to the Health Accord, 20 per cent of all acute-care beds are taken up by patients who are waiting for other health-care services. Every day, an average of 300 older adults receive a so-called alternate level of care.

Of those, 11 per cent are waiting for home support, 43 per cent for a long-term care bed and eight per cent for a personal-care home bed.

Looking back at their journey now, Rochester wants more support for caregivers, in the form of caregiver assessments and regular checkups, as well as mental health care and social workers dedicated to family caregivers.

"Somebody that I knew was there for me, not just for my mother," said Rochester.

"We're encouraged to take care of our parents at home. We get so much praise saying, 'Oh, you're doing a wonderful thing.' But we're not provided with any support."

According to a 2017 survey by the Alzheimer Society, about 20 per cent of Canadians have experience caring for someone with dementia. Two-thirds of them describe the experience as isolating.

"We know that if you're caring for someone in the home with dementia that the family is going to struggle. It's not a mystery. Talk to anybody. They know," said Rochester.

'My cup was empty'

Elizabeth is now in the Agnes Pratt Home in St. John's. For Rochester, the scars from their caregiving experience will stay for a while — as well as a need for weekly therapy.

While not every caregiver might want mental health support, they said those who do should also have easier access to long-term options.

"What helps people is a sense of community, a sense of relationship. And having a different person to talk to every week is not optimal," said Rochester.

"If you want caregivers to keep parents at home you have to invest in their well-being. You can't pour from an empty cup. My cup was empty."

Over the next few weeks, Concerning Care will tell the stories of the people introduced here, along with others, on various platforms — including on Here & Now, CBC N.L.'s website and on the radio.

If you have a story to share, contact us at care-struggles@cbc.ca.

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