When HIV moves into nursing homes
By Susan Pigg
Feb 27 2011 - It was as he writhed in pain on the bathroom floor, his anxious dog curled up in a ball against
his back, that the grim reality of growing old with HIV hit Jim Ayerst.
"I've never been suicidal, but that's the first time I thought, it's not worth it. I just want this over.
"I considered jumping off my balcony - but I only live on the second floor."
A wry smile creeps across Ayerst's weary face. He's just 64 but feels 80.
These days he's as terrified as when he walked out of a doctor's office with a diagnosis and an apparent death sentence 20 years ago.
"There are days now I wonder, what am I still doing here?"
More than two decades after modern medicine and toxic antiretroviral drugs seemed to stop HIV/AIDS in its tracks, Ayerst is the new face
of a disease that almost wiped out a generation of young gay men.
He is grey-haired and growing old at a rate 15 to 20 years faster than those without the virus. His body is wracked by a host
of chronic conditions more often seen in the elderly. In the last four years, Ayerst has been hit with diabetes, asthma, an aneurysm,
memory problems and a nerve condition that sends pain shooting up his left leg like an electric shock.
He lives in a Charles St. co-op apartment with help from "a team of angels" - fellow longtime survivors, personal support
workers, a nurse and social worker.
But there's one thing he fears more than death: being forced into a long-term-care facility where he might have to return
to the closet in order to fit in.
"If I get any sicker I won't have a choice but to go to a nursing home and that scares the bejesus out of me," says Ayerst.
Toronto's HIV/AIDS experts and activists are growing increasingly alarmed by "a hidden epidemic" - infected people who have
lived decades longer than anyone imagined and are being hit with a host of aging illnesses in their 30s, 40s and 50s. They include
dementia, cardiovascular and liver disease, cancers, diabetes, osteoporosis, emphysema and kidney problems.
Researchers are still puzzling over the reasons - whether it's the disease itself, the long-term effects of the medications,
or it's that compromised immune systems are simply breaking down.
"HIV is no longer a death sentence, it's a chronic disease," says Dr. Ann Stewart, medical director at Canada's first
free-standing HIV/AIDS hospice, Casey House. Doctors used to urge patients to get their affairs in order. Now they talk about the
likelihood of living to retirement.
"That's a message of hope," says Stewart. "But what exactly that means is also a big experiment."
So far, it's meant a lot of silent suffering, says Sean Rourke, an HIV/AIDS researcher and executive director of the
Ontario HIV Treatment Network. He's in the midst of researching the scope of the problem - longtime survivors with few supports and
even fewer places to live as they endure what's being termed "accelerated aging."
"It's not going to be a pretty picture. Most people are alone and suffering with these complications," says Rourke.
There are more than 20,000 people in Ontario living with HIV/AIDS, many of them in Toronto. Casey House has seen a
dramatic change in who they are: More than half its clients are over 50. Thirty per cent have HIV-related dementia.
Mainstream long-term-care facilities find themselves facing a delicate balancing act - how to care for frail elderly
residents, most of them women with dementia, and make room for much younger men with multiple chronic diseases often compounded by
mental health issues.
Some Ontario long-term care facilities have balked at taking those with HIV, saying "your needs are too complex to
be met in this facility." Others have practised a kind of reverse age discrimination, declining those with HIV/AIDS who are under 60.
"The health-care system and the long-term-care system just aren't designed to handle this," says Rourke, "not to
mention the stigma and other issues that come into play from being gay."
Kenneth Poon was just 45 and had had HIV for 20 years when shingles left him blind and so sick
he had to quit his job in the fashion industry, sell his home and move into Casey House.
It used to be that the young men who came to the hospice died two weeks later. But Poon holds the record for the
longest stay - two years and one month. That's partly because he had no place to go once he recovered.
He ended up in a four-bed ward in a mid-Toronto nursing home where he was the only openly gay resident.
"Staff at the home warned me that the average age of the other residents was 83. I was 47. I thought, 'I'll be fine.
I'm a very social guy.' But most of them had dementia and Alzheimer's."
Poon tried to make the best of things, until one night he lined up for dinner not realizing he had cut his arm.
"Kenneth is bleeding and he has HIV," a personal support worker repeated four or five times, her agitation escalating.
"There was about 30 seconds of silence," Poon says. "By later that night, everyone on my floor knew I had HIV."
Poon's table mates stopped talking to him and asked staff to pass him the bread and juice at each meal.
"I didn't get depressed when I got HIV. I've dealt with it for 25 years. I didn't get depressed when I went blind. Life
moves forward. But I became so depressed that my (HIV-positive) status was disclosed and that I had nothing in common with the other
Poon, now 50, contacted Casey House staff, who went into the home - as they've done since with other homes - in hopes
of alleviating concerns.
"I think the experience in long-term care is that really strong homophobia exists and (so does) a really strong fear
of transmission," says Karen de Prinse, chief nursing executive at Casey House. "That's been our clients' experience - that it's
a very difficult environment to get what you would call 'quality care.' "
De Prinse and many others in the HIV/AIDS support community have a lot of sympathy for long-term-care homes. If anything,
the hurdles faced by long-term survivors point to bigger issues around aging in Canada - the severe shortage of trained geriatricians,
nurses and personal care workers specialized in dealing with the elderly.
"We don't have a health-care system that can actually deal with this," says Rourke.
It's concern for long-term survivors has spurred Casey House to propose a new day-health program - and a new downtown
facility - that would serve 200 people with HIV/AIDs, offering checkups, dietary advice, social interaction and programs aimed at
keeping them healthy at home as long as possible.
As for Poon, he is now living in a downtown apartment with his guide dog Aiyden and gets help on weekends.
"I think I did a good deed as the first HIV resident at that long-term care home. Now they have taken on two more
people with HIV."
Scientists are scrambling to understand - and treat - the virus's unexpected impact on the brain,
says Rourke. It seems to be playing out in two ways, depending on what part of the brain the virus attacked and how long it took
to diagnose and start treatment.
In about half of cases, long-term survivors suffer depression, short-term memory loss, difficulty multitasking and
trouble retrieving words, all of which can make it difficult to hold down a job.
In more extreme, but rare, cases where the virus seems to attack the frontal lobe, long-term survivors can barely
function on their own.
It's as if their social filters are destroyed, causing them to forget medication, act sexually inappropriately or
make lewd comments that make it difficult to fit in anywhere, let alone in nursing homes full of folks who grew up when men
having sex with men was still a Criminal Code offence. (The law was changed in 1969.)
At Toronto's McEwan House, one resident with dementia started changing the water in a 100-gallon fish tank and left
midway through to get a coffee, flooding the home and shorting its electrical panel.
"It's been known since the early days of HIV/AIDS that it causes some cognitive decline, but people tended to die
quickly," says Michael Blair, former project coordinator at McEwan House, established 20 years ago as supportive housing for those
with HIV/AIDS and addiction and mental health issues. "Now we're seeing it play out in the long term."
He's had calls from staff at long-term-care facilities outside Toronto asking if McEwan can take residents with HIV
and dementia that they are finding difficult to manage.
Fudger House, one of 10 long-term-care facilities run by the City of Toronto, considered creating a separate wing
for those with HIV and AIDS in its 45-year-old facility, which has mainly four-bed wards and semi-private rooms. In the end,
staff opted to integrate them.
"We have been able to handle the cases we've had so far," says Fudger administrator Lorraine Siu. As the number of
residents with HIV/AIDS increases, or their ailments become more complex, the home plans to increasingly partner with places like
How to best care for residents with HIV/AIDS is just one challenge facing long-term-care facilities, says Christina
Bisanz, chief executive of the Ontario Long-term Care Association. "It's not always possible to integrate people with specific
needs in with the frail elderly."
Homes are already so stretched trying to cope with older, sicker residents, the OLTCA is asking for a 2 per cent
increase from the province this year to help cover those extra costs, she says. That money would do nothing to add beds or
reduce waiting lists.
Nor will it do anything to ease the fears of long-term survivors like Jim Ayerst, who was housebound three months
last summer, so crippled by vertigo that he had to crawl around his apartment and entrust his beloved 12-year-old dog, Herschel,
to a neighbour.
"My fear is getting to the point where I'm not sick enough for Casey House and too sick to stay at home, even with
nursing help. There are times I just want to stop all the drugs and let nature take its course."
Ayerst pauses to look at Herschel.
"I say that when I feel sick. Tomorrow, I could be doing cartwheels down Church Street. You never know with this
incurable, bloody disease."
Susan Pigg focuses on issues about aging and baby boomers. email@example.com
SOURCE: Toronto Star
"Reproduced with permission - Torstar Syndication Services"