A lifetime in long-term care

2183

Ontario’s homes are seeing an increase in younger residents with disabilities and mental-health issues, and many question if it’s an appropriate environment.

Like many 24-year-olds, Michael Wedemeyer loves music, and gets excited discussing heavy metal and rap. “I like Eminem, he’s my favourite of all time,” he asserts, giggling enthusiastically. “I like rap. Not the old-type stuff,” he quickly points out.

Michael has a hard time avoiding the “old-type stuff” these days, because unlike most 24-year-olds, he lives alongside 170 senior citizens in a long-term care home.

 In 2011, an aneurism and three strokes changed Michael’s life forever. He suffered a serious brain injury, developed epilepsy, and lost much of his mobility, particularly on the left side of his body. His short-term memory was severely affected, and he struggles to retain new information.

After the injury, Michael bounced from hospital to rehabilitation centre and back to hospital. His family couldn’t provide the 24-hour care he needed, so he couldn’t live at home. Unable to stay in hospital forever, his family searched for an appropriate alternative and found only one option: long-term care.

Michael moved into Norfolk County’s Norview Lodge in 2012. While he remains positive and cheerful, life in long-term care hasn’t always been easy. Michael likes loud music and motocross, and his boisterous laugh fills a room. This doesn’t always sit well with older residents who prefer Bing Crosby, bingo and quiet time. Michael is young enough to be someone’s grandson, and the older population sometimes treats him as such, scolding him when he gets loud. “Sometimes they’re mean to me and hurt my feelings,” he has said in the past.

 MORE: BOOMERS ARE ONLY THE TIP OF THE ICEBERG: BUILDING A HEALTH SYSTEM THAT MEETS THE NEEDS OF AN AGING POPULATION

It’s not just about fitting in. Michael is in the middle of a long journey toward recovery. Since the aneurism and ensuing complications, he has worked hard to regain his speech, and is gradually building his strength and range of motion. If he’s ever going to get back to a “normal life,” Michael requires more aggressive rehab than staff at Norview Lodge can provide.

“We do very well with what we have (but) I can’t say there isn’t more for him,” says Norview administrator Bill Nolan. “This young man, in our eyes, deserves to have some chance at a different sort of life than what he has right now.”

Michael isn’t alone. Across Ontario, people under the age of 65 are being placed in long-term care homes because they have nowhere else to go. Community housing can’t keep up with the demand in Ontario, where an estimated 62,000 adults live with developmental disabilities, and countless others suffer from mental illness and other chronic conditions that require constant care. As of 2013, there were more than 3,400 people (18 and older) with developmental disabilities in Ontario long-term care homes.

Ideally, these people would live in group homes or supported living settings. Since the 1960s, Ontario has been closing institutions for people with developmental disabilities and mental illnesses in favour of group homes run by local agencies. In these homes, residents are supported by trained staff who focus on fostering independence and community inclusion. The trouble is, there aren’t enough group home beds to go around.

RN Karen Pow is administrator at Woodlands of Sunset, a 120-bed long-term care home in the Niagara region. She has worked in the sector for nearly two decades, and says she’s seen a definite increase in the number of younger residents. In one former workplace, as much as 20 per cent of the resident population was under 65.

Long-term care homes are designed for older adults who are reaching the end of their lives, not young adults with decades to live, Pow says. “I’m not saying it’s a bad environment, I just don’t think it’s conducive to fostering independence,” she admits candidly.

Long-term care homes don’t receive additional funding to accommodate for the younger population, so they struggle to develop unique programming to keep them active and engaged. To make matters worse, once placed in long-term care, funding models change, and many young residents lose the financial support for outings, job placements and other programs they accessed before via social-services programs, Pow says.

 MORE: AN APPETITE FOR ADVOCACY

Many subsist solely on the Ontario Disability Support Program (ODSP), which provides a comfort account of just $138/month. This doesn’t leave much cash for a 30-year-old to live a fulfilling life, she points out. Bored and isolated, many of these residents get frustrated with their surroundings.

Pow remembers a 40-year-old woman from her previous workplace who was struggling with an acquired brain injury. She hated living in long-term care, and wasn’t shy about letting others know. Her aggression would often come out at meal times. “I hate f****** old people!” she’d stand up and yell, and staff had to be on constant guard against physical altercations with older, more fragile residents.

Long-term care has become a “catch-all” for people who don’t fit anywhere else, regardless of age, says Christina*, an RN and director of care at a Greater Toronto Area (GTA) home. Christina is 70-years-old, and says the majority of new applications she receives come from people younger than she is.

Without appropriate funding and staff, Christina says it often feels like younger residents are just being “warehoused” for as long as their lives may last. “They sit, and they sit, and they sit, and nothing happens. They don’t get any better (and) they don’t get any worse,” she laments. “Human beings, if we have nothing to strive for, we’ll just wither away.”

Christina would like to see government reexamine a system that lets so many people fall through the cracks. “We’re not doing this right as a society. We’re not filling this huge gap. What can we do to rectify it?” Properly funded units designed specifically for the younger population in long-term care would be helpful, Christina says, but ultimately housing via social services must be available to more people.

“Entering a long-term care home requires careful consideration by the individual and their family,” says Ministry of Community and Social Services (MCS) spokesperson Kristen Tedesco. Last spring, MCS recognized the need to expand developmental services, committing $810 million over three years. The funding should provide residential support for about 1,400 people with urgent needs. It will also enhance the ministry’s Passport program, which provides funding for people with developmental disabilities to participate in the community. Long-term care residents are eligible to apply.

The government’s investment is a start, but it still leaves thousands of young Ontarians in long-term care homes. Funding for developmental services won’t address the limited resources for people with mental illness and other disabilities. And for those already living in long-term care, it is difficult to obtain funding to move elsewhere, since they’re already receiving 24-hour care. Because of this reality, many long-term care homes have had to come up with creative ways to improve quality of life for their younger residents.

It didn’t take long for David* to tire of his new life at Dufferin Oaks long-term care home in Shelburne. David, 51, was born with Fragile X syndrome, a genetic condition that causes a range of developmental disabilities. “He was bored to death,” says the home’s director of care and RN, Jenny Power. David just didn’t have the resources to participate in community programs, and he dismissed the home’s regular programming as “old people” activities.

Staff noticed he spoke proudly about helping his dad at work when he was younger, so Dufferin Oaks gave him a job in the laundry department. He now works routine hours for two or three days a week, has regular duties, and reports to the manager.

“(David) loves it, he always talks about it and he sets his day around it,” Power says. “That’s going very, very well.”

Grandview Lodge in Haldimand County unofficially transformed one of its units into a wing for people under 65, who comprise about 10 per cent of its population. They turned the “quiet room” into a games room, and tried to adapt activities for a younger demographic. Under the Long-Term Care Homes Act, individual homes can designate specialized units and, through their Local Health Integration Network (LHIN), limit admissions to the corresponding population. Grandview staff met with their local LHIN, but found no additional funding available to support the initiative, says administrator Joanne Jackson. “We have to do the best we can with the funding we have and the admissions we have,” she says.

Without exception, every long-term care professional featured in this story agrees their homes are not appropriate for younger residents. They all concur these individuals would be better off in a group home that fosters their independence. This includes Chrissy Wedemeyer, Michael’s aunt and guardian, who works in housekeeping at Norview Lodge, where Michael lives.

When she imagines Michael’s ideal future, she sees him living a long and “normal life” among his peers. He’s receiving the rehab therapy he needs, and is working or volunteering in the community.

Above all, he can be himself. “He could have a friend spend a night at his apartment,” she imagines, “and he can crank the tunes all night.”