Nursing Home Fears

“The fear of living with inhumane, overcrowded conditions, loneliness and lack of hope”

The Hamilton Spectator, aka the Spec, writer Carmela Fragomeni had a great article (published 1.2.19) about the struggle one woman faces to get her medical care to match her wishes.

At 75, Arleen Reinsborough’s fear of nursing homes has her more determined than ever to seek assisted suicide.  Of course, fear of long-term care doesn’t qualify her for medical assistance in dying. But Reinsborough is confident her unbearable pain will.  Reinsborough has severe osteoarthritis, asthma, psoriasis so bad that her feet bleed whenever she stands up, and a damaged back and neck that linger from two past car accidents.

But it’s her future that makes her despair the most.

It isn’t depression that makes me want to die, it’s the fear of living with inhumane, overcrowded conditions, loneliness and lack of hope,” she says, referring to life in a nursing home.

“I’m trying to do all I can to prevent going to long-term care. I believe in quality of life, not quantity of life.”

The homes she says she can afford “are worse than living on the street or living at all.”

Reinsborough accepts that, as a member of the baby boom generation (born 1945-1965), there will never be enough services because of the size of the aging demographic.  Hamilton has 1,717 people on a wait list for a room in a long-term care (LTC) facility, most of them for the cheapest, basic room which costs about $1,848 a month. A private room is $2,640 a month and semiprivate runs about $2,228.

She has a “small, wonderful” family with two adult children who are “stretched to the limit” trying to help care for her, all while working and caring for their own children — two of whom have medical issues, and another has a learning disability.

“How could I ask more of them?”

 Reinsborough’s decision to apply for assisted dying was difficult. “I have chronic illnesses. The only way that ends is very badly,” she says.

I’m like a prisoner of a war camp I can never escape from, and every day I get a level of pain from four to 10 — every day. “In other words, it’s torture.”

Her husband of 52 years, John, 82, is not keen on her wish for assisted dying, but he respects it; he understands her suffering. “The medical profession doesn’t seem to offer too many solutions,” he says. “Either you sit by and watch your wife suffer, or you watch her pass away.”

Their son and daughter, however, are non-committal, according to John. It is hard for them, because they are younger, to truly know their mother’s pain, he says.  Reinsborough says her children did not want to comment because they wish to remain anonymous. “This is not an easy route to take but I cannot see any other options and there is a time for all of us,” she said.

“We’ve lost our compassion for seniors,” she says. “We’re not cute. Some people say we also smell. Well, so did they when they were babies.”

“There is such a lack of places to die in peace, dignity, and pain-free with gentle care,” she recently wrote the prime minister in a plea to expand assisted dying rules. “All I see ahead of me is poverty, suffering and a lack of caregivers.”

“If assisted suicide is not available to seniors like me, there will be a lot of botched attempts,” which she says will put a strain on hospitals.