Dan Heap’s bushy hair and beard are now snow white. The piercing blue eyes that once animated fiery political speeches on workers’ rights, refugees and the oppressed are clouded.

“I don’t have as sharp a memory as I wish I had of those days,” he says apologetically of the 21 years he spent as a downtown Toronto alderman and NDP member of Parliament.

A heart attack and an Alzheimer’s diagnosis in 2005 have taken their toll on the once mighty titan of social justice.

Heap and his wife of 61 years, Alice, put their names on a waiting list for long-term care in 2006 and have been ailing in a retirement home since 2009, where they pay up to $10,000 a month for lodging and care.

Last December, the Annex Retirement Residence on Spadina Rd. said it could no longer meet the couple’s needs. In February, the family hired extra help to bridge the gap. And they began to pressure the local Community Care Access Centre (CCAC) to place them in Kensington Gardens, the long-term care home they had chosen almost five years earlier.

On Sept. 18, after Heap had reportedly wandered into another resident’s room, the retirement home called police. The couple would be evicted unless the family provided around-the-clock supervision.

And so, for the past 25 days and nights, Heap’s seven children and 17 grandchildren have been pressed into service. Ten of them have kept constant vigil, at night sleeping on the floor of the couple’s cramped two-room apartment.

If this can happen to revered social justice advocates like the Heaps, who have a large and loving family to pitch in and generous pensions to pay for extra help, what hope is there for the rest of us?

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• Related: A mother's thanks to an MP who cared.

• Related: PHOTOS: Dan Heap through the years.

It is a question that haunts son Danny, 54, who along with his sister Margaret, 60, has been coordinating their parents’ care.

“It’s not right what is happening to them,” he says. “We are telling our story so that we can change the system — so this doesn’t happen to us.”

Margaret’s daughter and the Heaps’ eldest granddaughter, Rachel Heap-Lalonde, 33, has come by train from her home in Montreal to help this week. As the social worker prepares for her overnight stay, and a reporter arrives, Heap sits up in bed and wants to talk.

“Alice and I are 86 years old,” he says as he glances at his wife, asleep in the bed beside him. “I’m not following the poverty issue as well as I should be. But Alice keeps me up to date.”

Alice, an equal partner in Heap’s social activism, is an insulin-dependent diabetic who was the major caregiver in the couple’s co-op apartment at College and Beverley Sts. before she got shingles and became incontinent in 2006. Although her physical health is now worse than his, Heap still relies on her sharper memory.

Heap can’t remember much about his years as a politician, but he is eager to talk about his middle-class childhood in Winnipeg and summers canoeing on Lake of the Woods. There was a scholarship to Toronto’s Upper Canada College, a university degree at Queen’s and divinity school at McGill, where he became an active socialist involved in the Christian Student Movement and the CCF, the precursor to the NDP.

But life as a meagrely paid Anglican parish priest in western Quebec was not easy for a family man in the 1950s, he says. So he came back to Toronto to spread the socialist gospel in the factories.

He speaks fondly of his large family and 18-year career working in a Toronto cardboard box factory, where his goal was to “bring socialism to the Canadian worker.” The family’s Kensington Market row house was a hotbed of student activism around the anti-war, anti-apartheid and social housing movements of the ’60s, ’70s and ’80s. Often as many as a dozen young people bunked in with the family.

In 1993, when Heap retired from politics, the couple sold the Wales Ave. house at a fraction of its market value to an organization that provides housing for refugees.

In retirement in the 1990s, he helped found the Toronto Disaster Relief Committee for the homeless, which often meets in the Church of the Holy Trinity, nestled behind the Eaton Centre.

There is a noon-hour service at the church on Wednesdays, when church staff and volunteers are on hand to lend an ear to people in trouble. The Heaps cherish this work, and family members still bring them for the service and lunch every week.

Although the family acknowledges Heap has had angry outbursts at the Annex residence, this evening he seems happy about his surroundings.

“It’s pretty good. The arrangements are reasonable. The food is good — I’m a bit surprised at how good,” he adds with a laugh.

Heap knows, however, that his family is anxious to move him.

As Danny notes, Heap sees the move in class terms: “Management is not treating them well, so they have to move.”

For its part, the residence says it has done everything it could for Heap and that retirement homes are generally not equipped to handle people with advanced Alzheimer’s who wander and who may become violent.

The Heaps chose Kensington Gardens for its location in the neighbourhood where they have lived and been socially active for most of their lives. It is also close to Danny, who doesn’t drive, and who is the primary family caregiver in Toronto.

Unlike most families, who put their parents on several waiting lists, the Heaps went with Kensington Gardens because it is the only long-term care home Dan and Alice are willing to live in, Danny says. The family realizes that may be why the wait has been so long and why they are in this crisis. But they make no apologies.

“We have a system that allows people to choose where they want to live,” Danny says. “They put their name on the list five years ago and have been very patient. We don’t see why they shouldn’t be able to remain in their community in the home of their choice.”

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Lawyer Jane Meadus, institutional advocate for the Advocacy Centre for the Elderly, says stories like Dan Heap’s are too common.

Home care “has to come up with more hours to allow people to stay in their homes longer,” she says.

Waiting lists for long-term care homes are complex and confusing. Families need more plain-language information about how the system works, she says.

In addition, provincial regulations are desperately needed to ensure basic standards of care in retirement homes. And residents need to be protected from illegal eviction.

Retirement home legislation was introduced in 2010, but the bulk of the regulations have yet to be announced, Meadus says.

In retrospect, Danny says he wishes the family had paid to build a ramp for the stairs down to his parents’ basement co-op apartment and hired a caregiver to help with meals and bathing.

“But to be faithful to my parents’ commitment to universality, I think the right answer would have to be one that works for everybody, and not just a couple who have a very high retirement income,” he says.

“The best solution would have been to have government grants for in-home infrastructure — for example ramps replacing stairs — and then community care hours that cover living at home with health conditions like my mother,” he contends.

That would mean covering showers, six changes a day, meals and administering medication. But Danny figures it would still be less costly than long-term care and it would allow people to remain in their communities.

Stacey Daub, executive director of the Toronto Central Community Care Access Centre, which coordinates in-home care and transfers to long-term care facilities, says she hasn’t met a senior yet who lists long-term care as their first choice when they are no longer able to manage at home alone.

“When it comes to long-term care, we often measure the wrong thing,” she says, referring to reports on waiting list lengths and the time people wait to get into a home.

Instead, she believes there needs to be a public debate on what society feels is the right institutionalization rate for seniors.

“We need to set ambitious goals as a society and strive to meet them,” she says.

The organization is already piloting enhanced care programs to help the frail elderly stay in their homes. And they are working to move more elderly from hospitals into the community instead of into long-term care.

However, Daub acknowledges that for some seniors with Alzheimer’s, long-term care may be the only option.

Heap’s family feels that is the case for him now. Coincidentally, as they were sharing their story with the Star this week, a room on a secure floor for seniors with Alzheimer’s became available at Kensington Gardens. They moved Heap on Friday.

Now the family is worried about Alice and how long she will have to wait to join her husband. And there is the new logistical issue of visiting parents in two different places.

“We really want to step up the pressure to get my mom in,” Danny says. “But it’s hard. Even when they are both there, they won’t be sleeping in the same bed, or even on the same floor.

“I can’t imagine what that is going to be like for them after 61 years.”

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