Nova Scotia·Health Hacks

What a health-care consultant learned as a caregiver for her mother

During her mother’s terminal illness, health-care consultant Mary Jane Hampton was a caregiver. The experience taught her a lot about the “invisible” role of caregivers.

'I didn't realize how big the caregiver community is, because it's mostly invisible to outsiders'

Up to one third of Nova Scotians are caring for a loved one who is ill, disabled or who has needs related to aging. (CBC)

This is part of a series from CBC's Information Morning where Halifax health-care consultant Mary Jane Hampton discusses her "health hacks" — ways to make your experience with the health-care system better.

If you're one of the many thousands of Nova Scotians caring for a loved one who is ill, Mary Jane Hampton knows how you're feeling.

During her mother's illness, she was her family's caregiver, and the experience taught her a lot about the role that she hadn't previously considered.

"It became personal," she told CBC's Information Morning. "In the last year and half of helping to care for my terminally ill mother, I couldn't help but notice that I was seeing the same people in waiting rooms week after week.

"Not patients — the people with the patients. The ones who had brought them to the appointment, attended the visit with the doctor and presumably had something to do with the care plan once they got the person home again.

"If I didn't recognize their faces, I recognized the look on their faces. For the most part, they were very, very tired."

Mary Jane Hampton is a health-care consultant in Halifax. (Robert Short/CBC)

According to a 2012 report from Statistics Canada, at least 31 per cent of Nova Scotians are providing care to a family member or friend with a long-term health-care condition, disability or with needs related to aging.

It's reasonable to expect this number is now higher given the aging population and the seven years that have passed.

"That one third of the population is invisible by nature," said Hampton, "because they are living day to day, providing hours and hours of support

"The support ranges from the lightest stuff — helping with transportation and shopping and preparing meals — right through to providing really complex care and doing dressing changes, helping with personal care and hygiene, all the activities of daily living."

Listeners reached out

Hampton said she really hadn't appreciated how big this world is until she was plunged into it, and discovered services that can help.

People have also been reaching out after hearing her speak on CBC about caring for her mother. Many confessed they'd been living "on the edge of crisis."

The Statistics Canada report suggests caregivers are slightly more likely to be women than men, and the majority of those are the "sandwich generation," caring for one or two aging relatives while still raising children.

"The health impact on informal caregivers can be profound because this caregiving role can last for months or years," said Hampton. "Even though one gets better at it, over time it inevitably becomes harder.

"Most commonly, caregivers don't get enough sleep, don't eat well, experience high levels of stress because they are juggling so many competing demands and can suffer from depression. They are inclined to put their own health care on the back burner."

Caregivers should prioritize their own well-being

"Probably the most practical bit of advice is to get sleep because being sleep-deprived is actually the biggest health risk and contribution to stress and exhaustion," she said.

"Eat regularly, and find just a few moments that you can have as your time. Don't overthink it, don't make it too ambitious or too complicated. And if you know of someone who is an informal caregiver, reach out or at least cut them some slack."

Hampton also recommends looking for helpful resources, such as those at Caregivers Nova Scotia and the Canadian Institute for Health Information.

"Being a caregiver is a big deal and a huge sacrifice but it's worth every moment of the investment," said Hampton. "If we paid for all this informal caregiving, conservative estimates are that it would cost $26 billion annually in Canada, with some estimates putting the value at over $70 billion.

"Most people who accept this role do so willingly, even though it comes at considerable cost and can take an enormous physical and emotional toll.

"They're the face of our invisible workforce, but their shift never ends."

With files from Information Morning

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