Crucial for health system, many caregivers are struggling financially and emotionally, report says

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They come from all walks of life, young and old: millions of Canadians who are unpaid caregivers for aging parents, children with a disability or a sibling with a chronic illness. Yet a new survey reveals many are struggling, often in isolation, trying to fulfil a critical role with not enough support from the health-care system.

Results of the Ontario-based survey of 800 caregivers aged 16 and older, released Thursday by the Change Foundation, paints a picture of people often thrown unexpectedly into a role for which they typically aren’t trained and one that has major effects on their physical and mental health, relationships and career paths.

« Family caregivers provide the vast majority of care that happens in between appointments with physicians or in between hospital stays or different interactions with the health-care system, » said Christa Haanstra of the Change Foundation, an independent health policy think-tank dedicated to enhancing patient and caregiver experiences.

« There’s a lot more health care happening in the home, provided in large part by family caregivers, » said Haanstra, noting that caregivers are often invisible in the health-care system, with their contributions going unrecognized as well as unrewarded.

« We really think about them as the glue that keeps the health-care system together. »

Financial and emotional toll

The online survey, conducted in May by the polling firm Pollara Strategic Insights, found that caregivers overall appreciated the time spent with their loved ones and believed they were improving their lives.

But 61 per cent admitted they took on the role because they believed they had no choice, with many at times feeling trapped, helpless, frustrated and overwhelmed.

The survey found 36 per cent of caregivers felt depressed and 33 per cent were resentful of their role, with almost half overall saying caregiving had negatively affected their ability to have personal time, engage in travel or enjoy a social life.

One-third said they had experienced financial costs due to caregiving, including out-of-pocket expenses, time off work and turning down career opportunities. Eight per cent lost their jobs due to caregiving responsibilities.

« Family caregivers are providing care to almost everyone — siblings, parents, children — and they cover diseases across the spectrum, » said Haanstra, who has a young child and also helps care for both her aging parents and a relative with a chronic illness.

« Obviously, the largest group is caring for people with health-care issues related to aging, Alzheimer’s being one of them, frailty being another.

« But we are also talking about providing care to people with cancer, with disabilities, mental illness, chronic diseases of many varieties and acute illness, post-injury or accident, » she said, noting that an estimated 28 per cent of Canadians over 15 have taken on a family caregiver role.

‘Completely dependent’

One of those people is 25-year-old Stephane Alexis of Orleans, Ont., near Ottawa, who helps his parents care for his younger brother Torence, who has cerebral palsy and is non-verbal.

« He’s completely dependent, he needs help with feeding, changing, even turning in bed, » Alexis said of Torence, 22. « He’s a pretty heavy dude, so there’s a good amount of lifting involved. »

Alexis, who attends a private photographic arts college, helps out after school and on weekends attending to his brother’s needs, but their relationship goes far beyond that.

« He’s completely dependent, he needs help with feeding, changing, even turning in bed, » Alexis said of Torence, 22. « He’s a pretty heavy dude, so there’s a good amount of lifting involved. » (Justin Tang/Canadian Press)

« I love my brother a lot. I love spending time with him. He’s funny, he makes me laugh. »

But Alexis admitted that even being a part-time caregiver comes at a cost. He’s often exhausted, has little time to socialize with friends, and has had to put some life goals on hold.

« I was planning on moving out [of the family home] relatively soon, but I feel like I can’t do that. I can’t leave and just let my parents fend for themselves. »

He’s frustrated there’s so little support from the health-care system: the family receives only 15 hours a week of help from two social services agencies.

« It doesn’t seem like there’s really any funding for home care. They kind of just leave you out there, » said Alexis, who believes his brother’s quality of life is « better at home » than it would be in a publicly funded residence for people with special needs.

« Why not use some of that money that you would be investing in a residence and use some of that money for home care? »

‘I was worn to a frazzle’

For Don Mahood, frustration with the health-care system began when he was trying to get a diagnosis for his wife Mary Charlotte, who had been experiencing worsening memory problems for some years, forcing the registered nurse to give up her job.

« I tried to get her diagnosed with the doctor with difficulty, » Mahood, 76, said from London, Ont.

« You’d get to the doctor and say my wife has some dementia. He would give her a test and talk to her for maybe 10 or 15 minutes and tell me she’s perfectly fine. Anyone with Alzheimer’s, especially in the early stages, can really mask it. »

Caregivers gathered at Dundas Square in Toronto in May to demand better working conditions. (CBC)

Mahood finally got a referral — a year later — to the Aging Memory Clinic in London, where doctors in 2012 confirmed his wife had Alzheimer’s.

For the next six years, Mahood was Mary Charlotte’s 24-7 caregiver, until his wife of more than 50 years was moved to a long-term care facility about a year ago.

« At the end, I had to dress her, bathe her. I had to do everything, she couldn’t brush her teeth, » he said. « When I look back, I don’t even know how I did it myself.

« I was worn to a frazzle. »

Though caring for his wife was a labour of love, the disease put an end to their plans to spend part of their retirement years in Florida. Mahood also had to give up activities such as playing hockey, and his social life faltered as long-time friends dropped by the wayside.

« So my friends became others that were going through it … I would never have survived if I hadn’t belonged to support groups. That really saved my life in a sense. »

Haanstra said such stories, along with the survey results, demonstrate that the health-care system must do more to support caregivers and make it easier for them to access existing services.

« They’re willing to do it, but we can’t just send them home with no support and no information and expect that they’re going to succeed. »

Margin of error was not applicable to the survey findings because of its online methodology, the researchers said. But the margin of error on a representative sample of 800 people would be +/- 3.5%, 19 times out of 20.

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Little action on Ottawa’s promise to help struggling media sector

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OTTAWA—Nearly nine months after the federal Liberal government announced it would spend $50 million over five years to boost “local journalism in underserved communities,” not one dollar has gone out the door.

Nor has the government outlined how it intends to facilitate charitable support for professional “non-profit journalism and local news.” Nor how it intends to support “the transition to digital media.”

Unifor president Jerry Dias, whose union represents nearly 12,000 workers in the media sector, says there need to be some “dramatic changes” in the way local newspapers are funded.
Unifor president Jerry Dias, whose union represents nearly 12,000 workers in the media sector, says there need to be some “dramatic changes” in the way local newspapers are funded.  (Justin Tang / THE CANADIAN PRESS FILE PHOTO)

All were promises made in last year’s budget and repeated in the heritage minister’s mandate letter.

It’s baffling to those in the journalism industry, newspaper publishers and the country’s largest media union, especially with Prime Minister Justin Trudeau championing the need for strong traditional media this past week.

In France, Trudeau emphasized his government’s commitment to supporting the need for a vibrant free press to hold government and their institutions to account.

However Jerry Dias, president of Unifor which represents nearly 12,000 workers in the media sector, says the time for talk is past, and it’s time for action.

“You’re not going to all of a sudden change people’s habits to buying print media, I get all that,” said Dias in an interview. “But we’ve closed over 200 local newspapers in Canada so there has to be a mechanism in which to fund them. There needs to be some dramatic changes.”

A 2017 report by the Public Policy Forum said from 2008 to 2016, 169 local media outlets closed and another 54 reduced services, a trend that accelerated in 2017, most notably with the swap of assets by Torstar and Postmedia. A subsequent followup report in September shows the quality of news coverage across the country has also declined.

Yet Dias said what the federal government announced in last February’s budget amounted to “nickels and dimes.”

“What they threw at it was no solution, it was more tokenism than anything else,” he said.

News Media Canada, which represents 800 daily, weekly and community newspapers, had urged the government to provide $350 million to support a Canadian Journalism Fund, and was disappointed with last year’s announcement of $10 million a year, for five years.

John Hinds, president and CEO of the industry association, said the association’s numbers show that from 2009 to August this year, 137 Canadian daily or weekly community newspapers ceased publication, 38 of which closed since January.

“It’s pretty chilling,” he said in an interview.

Yet the industry is still waiting for details of how the government will meet its nine-month old promises of support.

“We were told they would issue an RFP (request for proposals) at some point for a group to look at sort of managing the fund because they don’t want to do it on their own” in order to respect the independence of media outlets, Hinds said.

“Our view would be that we’d like to replicate the model that they followed in the U.K. with the BBC, where the BBC has funded 120 journalists to work in local newspapers,” he said.

News Media Canada has talked to Canadian Press, Aboriginal Peoples Television Network and a Quebec media coalition about joining forces to submit a proposal, Hinds added. “We’d love to get working on it, as you know time is off the essence on this. But to date, we haven’t had any followup.”

Simon Ross, spokesman for Heritage Minister Pablo Rodriguez, insisted the government is moving “to quickly implement” the measures promised last winter, but he declined to provide any details “because I don’t want to scoop myself.”

“What I can tell you is we are working with organizations across the country so we can implement this as quickly as possible and to ensure that it respects journalistic independence because that of course is very important.”

Tonda MacCharles is an Ottawa-based reporter covering federal politics. Follow her on Twitter: @tondamacc

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Regina Legion, cultural clubs struggling to stay afloat – Regina

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They’re often the last bastion of support for those who served in the armed forces, but now the Royal Canadian Legion finds itself in need of help.

“We’re in a position where we can’t pay our bills simply because we don’t have the facilities in our bar or our café to pay our operating costs,” Ron Hitchcock, the curator of the Royal Canadian Legion Branch 001 museum said.

“We’re dipping into our savings to pay those and it won’t be long until we’re closing our doors,” he continued.

Those costs are in the neighbourhood of $15,000 per year and including a generous rent of just $10 a year.

“We started this GoFundMe page, we didn’t know whether it would work and we were actually embarrassed to ask for money because that’s just the way it will work. So this [money] will help, but otherwise it’s simple mathematics,” Hitchcock said.

So far the plea has raised nearly $5000, but it’s a band-aid solution that masks the real problem: declining membership.

“Years ago there was 1000s of WWII veterans, Korean veterans and WWI veterans, but they’re all gone now,” Hitchcock said.

The Legion has just 300 members and the majority aren’t getting younger.

“Gradually, we’re getting some young veterans that are willing to stand up and speak…that will help us grow,” Hitchcock said.

The Legion isn’t the only club in the city struggling financially. The Austrian Club was forced to close its doors earlier this month, and the German Club recently asked for the public’s support in order to afford a new furnace.

“It’s tough, it’s saddening. I feel for them, and we feel very fortunate that we still have even our older generation,” Anna Carteri, the general manager of the Canadian Italian Club said.

The Canadian Italian Club, along with the Serbian Club are some of the few still thriving; something they managed to do by opening their doors to everyone.

“You can’t always think of your own. You’ve got to open up and we did open up.” Rod Milic, manager of the Serb Club said.

Both clubs are open to Canadians and have a number of Canadian members.

Milic says of their 2000 members 70 per cent are under 50 years old and most aren’t Serbian – but they appreciate the culture.

“We don’t push ourself to them, but throughout the day and throughout the months they get to know us and we bring them up to date what Serbia’s all about,” Milic continued.

The Canadian Italian Club recently began allowing non-Italians to dance in their traditional dance groups, and already has amassed a small collection of Canadian dancers.

“Because of the generations, we didn’t really have enough of the younger kids, so we opened it up to non-Italians,” Carteri said.

The solution isn’t ideal, but it has kept the two clubs afloat, and could be a model for other cultural clubs in the city.

For the Legion they’re hedging their bets on the next generation of vets, and hoping support for the country’s service-people will keep them afloat.

“Veterans need our help every day, every month of the year. We need funds to keep this place going all year long,” Hitchcock said.

© 2018 Global News, a division of Corus Entertainment Inc.

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Jennifer Keesmaat struggling to gain on John Tory, poll shows

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As Torontonians vote in advance polls, an opinion survey suggests former chief planner Jennifer Keesmaat is failing to gain ground on frontrunner Mayor John Tory.

The Forum Research poll of 987 Torontonians conducted Oct. 3 to 5 gave Tory the support of more than half of respondents, 56 per cent, and Keesmaat less than one-third at 29 per cent.

Voters stream into Toronto city hall to vote in advanced polls for one of the 35 mayoral candidates and for one of the 242 council candidates running in 25 wards in the Oct. 22 election on Oct. 10, 2018. Advanced polls are open until Oct. 14.
Voters stream into Toronto city hall to vote in advanced polls for one of the 35 mayoral candidates and for one of the 242 council candidates running in 25 wards in the Oct. 22 election on Oct. 10, 2018. Advanced polls are open until Oct. 14.  (Steve Russell / Toronto Star)

Fifteen per cent of people expressed support for one of the 33 other mayoral candidates while the rest were undecided.

The poll’s margin of error is plus or minus three percentage points 19 times out of 20.

A previous Forum interactive voice response telephone survey, conducted Sept. 29, gave Tory the same level of support and 28 per cent support for Keesmaat.

“Tory looks to have a double-digit lead, and, with only 2 weeks to go before election day, it’s a lead that may be very difficult to erase…,” Bozinoff said, adding that “at this point, a Keesmaat victory would almost certainly require a Tory collapse.”

Keesmaat, 48, made a surprise jump into the mayoral race July 27 as nominations were about to close, jolting a Tory re-election campaign that appeared set to cruise toward the election without a prominent challenger.

She has positioned herself as a progressive alternative to the conservative, suburban-minded mayor with platform planks that include replacing the elevated east Gardiner Expressway with a ground-level boulevard, and putting bike lanes on a stretch of north Yonge St. as part of a city staff-proposed street remake.

Keesmaat has also said she would fight Premier Doug Ford’s attempts to shape Toronto decisions while Tory has stressed his ability to get along with other governments.

Last week, when asked about her campaign’s apparent failure to steal support from Tory, Keesmaat said she remained “incredibly optimistic” that she would emerge the surprise victor in what she called a “David and Goliath” battle.

Election day is Oct. 22 but advance polls opened Wednesday, two in each of the 25 wards and another at city hall. The early voting runs until Sunday.

On Wednesday morning Tory escorted his mother Elizabeth Bacon to an advance poll at Timothy Eaton Memorial United Church on St. Clair Ave. W.

David Rider is the Star’s City Hall bureau chief and a reporter covering Toronto politics. Follow him on Twitter: @dmrider

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