Mom fears adult son will end up in a nursing home if anything happens to her

Trish Crawford
Toronto Star Life Writer

Whenever Martha Eleen has become weak, ill or just burnt out from caring for her son Gabriel, who has develpmental disabilities, the spectre of a nursing home forces her to rally her resources.

The single parent and artist, who had Gabriel when she was 20 years old, has spent 30 years being his prime caregiver and advocate. Gabriel has had to go into a group home or health centre at times so Eleen can get some respite. It is then, faced with Gabriel’s needs, some official suggests a nursing home.

“This is what has been hanging over him his whole life,” says Eleen. “My worry is that I’ll get in a crisis, die or get too old to lift him and they’ll put him in a nursing home,” says Eleen, who was one of dozens of parents who contacted the Star after a story in last Friday’s Health section on young adults with disabilities going to nursing homes.

Eleen makes three points:

We should not be debating which institution is suitable, whether hospital or nursing home or group home, but how best to support people to live in the community.

Parents of adults with disabilities are expected to be unpaid, lifetime caregivers. Their deaths cause a crisis in support for their children with disabilities.

An adult with a developmental disability has the same dreams and aspirations to live in the community, have friends and interesting activities as anyone else.

Part of growing up is moving out of your parents’ home and making your own way into the world, she says, and Gabriel yearns to get a little apartment in downtown Toronto and go to caf├ęs and concerts with friends.

Whether he can live his dream depends on how much financial support the government is willing to provide because Gabriel needs the help of others to do most everyday tasks, she says.

Gabriel, who is blind and uses a wheelchair, leads a full and busy life with the help of a group of part-time assistants, many of them artistic like his mother. He loves to chat, listen to music and take the subway.

“One of his passions is riding the subway. He is interested in vibrations and motors. He’s extremely wired and listens to the radio a lot,” says Eleen.

In the past few years, he has been receiving enough financial assistance to employ five part-time assistants who help him move about the city. This has led to a wonderful change in mother and son’s lives.

Gabriel attends church on Sundays, sings with another church group on Mondays, goes to yoga classes, volunteers at a food bank and advises on issues involving accessible city transit.

“Both of us have really blossomed,” says Eleen, who has been able to return to painting as well as teaching. With sleep-over backup at home, she has been able to accept artist-in-residence positions including an upcoming appointment to a community in the Yukon.

“I had to put my career aside. For years I was alone with Gabe.”

Eleen points out all evaluations of her son’s need for government supports include expectations of maternal care-giving based on her health and age. But she asks why an adult with disabilities needs are evaluated in terms of parents continuing to shoulder the lion’s share of care.

“They just assume I’ll be his support worker until I’m in crisis. I love him and will do everything I can for him but I get so taken advantage of by government.”

For peace of mind and because it is what Gabriel wants, Eleen is hoping her son can be established in his own home with supports one day soon.

Gabriel has a circle of friends, many of them former support workers, who recently got together to figure out a way for him to live in his own place if he gets more money from the government.

Ideas being tossed around include everything from Eleen selling her East York home and buying a two-unit home to applying for accessible housing in a co-op to sharing a house with friends.

That way, if anything happens to Eleen, Gabriel will already be cared for within the community.

“If I die today, he’ll be in a nursing home tomorrow,” says Eleen. “But, if I could set him up for the rest of his life while I’m here, then he could be protected from that.”