Caregivers get little support

Imagine a job that entails being on duty 24 hours a day, seven days a week. It requires any type of work, from heavy lifting, to meal preparation to rudimentary health care.There’s no vacation time, no recognition of your work and, oh yes, no pay either. Experience is an asset but definitely not required.

Though it may sound like the world’s worst job description, each year millions of Canadians agree to take it on. They’re informal caregivers-the men and women across the country who put their lives on hold, give up their jobs or forsake peaceful retirement years to look after an ailing loved one at home.

One couple’s story
Muriel Presant’s story will be familiar to anyone who’s tried informal caregiving. The no-nonsense retired nurse grew up in Saskatchewan bush during the depression and worked in health care settings all over the world. She thought she’d seen it all. But nothing prepared her for what informal caregiving held in store.

Muriel and Jack Presant retired to a small Cape Breton community in 1986 to enjoy their retirement. In 1997, their life was interrupted when Jack was diagnosed with vascular dementia and Muriel ok on the task of caring for him. It was just around the time home care was starting in Nova Scotia and no one really had an idea of what they were getting into. What followed was not a pleasant period in her life.

“The whole thing was a bad experience, from start to finish,” Muriel says, pausing uncomfortably at the memory of it. “No one is facing up to the fact that there’s far too much stress being placed on the informal caregiver. Under the current system, the lot of the informal caregiver is one of total frustration.”

No frills healthcare
In today’s no frills healthcare environment, hospitals are discharging patients home and there’s a persistent shortage of beds available in long-term care facilities. So the task of informal caregiving often falls by default to a loved one. And it doesn’t matter if the person-most often a spouse-is up to the task. The job is theirs anyway.

The great failing of this set-up is that there’s no map to guide informal caregivers as they begin this perilous journey and no infrastructure in place to help them along the way.

From all accounts, including a recent report from CARP, Canada’s Association for the 50 plus, their needs aren’t being looked after. CARP’s Home Care Report says the grind is beginning to take its toll on caregivers-both emotionally and physically.

Need for support
The problem really lies in the fact that home care isn’t nine to five, Monday to Friday. It’s a job that demands being on call 24 hours a day, 7 days a week. In Muriel Presant’s case, a nurse coming in for a few minutes to take Jack’s blood pressure or a home care support worker visiting once a week just wasn’t enough.

More help was needed, and despite her frequent pleas, funding and human resource shortages made it impossible for Home Care Nova Scotia to respond.

Muriel’s cry for support cuts to the heart of one of the greatest issues in home care. In each province it seems that the informal caregiver has slipped through the health care safety net, overlooked by the system.

Juggling job, care
CARP’s Home Care in Canada report goes further, pointing out that informal caregivers need support in all areas-not just at home. For those trying to juggle the demands of work and provide home care, the picture is even bleaker. They’re torn between two worlds, and both companies and employees are having difficulties coming to terms with this conflict.

Home Care in Canada surveyed Canadian businesses to find what effects informal caregiving has on an employee’s work life. They found employees in this situation: 

  • Experience decreased morale at work
  • Are more likely to take sick days and often work irregular hours.
  • Spend work time on the phone arranging home care.

Lost productivity
It all amounts to lost productivity for the employer and a very stressed-out employee.
The Report says that some businesses are trying to help by allowing employees flexible work hours and personal leave. But these allowances often come at the generosity of an individual employer-they’re not part of a formal structure than informal caregivers can depend on.

For Muriel Presant, there were many areas where she could have used a helping hand. But what she needed most was a break.

“Respite is imperative for someone carrying for a family member,” she says. “You have to get away from it-a couple of hours of a week is useless.”

Though it might seem harsh, it’s the brutal reality of caring for someone day-after-day without any break.

“As Jack’s faculties diminished, he needed stimulation from someone other than me,” Plus she needed time on her own, ” to pull her life back together.”

Caregiver worn down
However, the Presants lived in a rural area where no geriatric day care services were available, and any respite she could garner, she had to pay for from her own pocket.

“The wealthy can look after themselves and the poor get government assistance,” she says. “But for the working poor and middle class informal caregiver, it’s a disaster of unimagined proportions.”

Worn down by constantly caring for her husband without help, Muriel’s own health failed when developed a thyroid problem. It became clear that for her sake, Jack needed to be placed in a long-term care facility.

As no beds were available in the Cape Breton area, she looked to Ontario, where Muriel and Jack had lived most of their lives.

Tax system punitive
Then came the final blow. The government didn’t react kindly when she tried to claim through income tax the cost of moving her husband to Toronto, attendant expenses and the cost of long-term care.

In fact, for three years, the revenue department has chased after her, trying to recoup the income claims she’d made.

“All I was looking for 17 cents on the dollar-to recover my out-of-pocket medical expenses,” she says. “But the tax system doesn’t do the informal caregiver any favours either-in fact, it’s punitive.”

A severe letter to the tax department did the trick–they’ve stopped pursuing her. But Muriel feels shattered by the entire experience and has started writing letters to anyone who will listen. She’s hoping to wake them up to the reality of her plight and that she and the millions of other informal caregivers go through every day.

“It’s a constant battle, a nightmare,” she says, her voice cracking. “You’re on your own, fighting all along the line.”