She’d rather die than go into care home
Pain, poverty drive senior to seek assisted suicide, despite the barriers
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.”
Hamilton has 1,717 people on a wait list for a room in a longterm 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 semi-private runs about $2,228.
The facilities are mandated to provide 24-hour nursing and personal care.
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.
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 to10 — 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 noncommittal, 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.
Last fall, Reinsborough, fed up with the “torture” she felt, went to the hospital ER and told staff that without more help, she was going to the Jolley Cut to “jump off.”
“I meant it, too ... I had even thought to call 911before I do, so (police) could clear the Jolley Cut and no one else would get hurt,” she says. “I could see no hope in sight.”
She ended up getting three hours of home care per week in order to take a bath and make her bed.
Now, she’s awaiting a referral to a doctor willing to help her die.
“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.”
Margaret Denton, a gerontologist with the Hamilton Council on Aging, says many seniors feel the way Reinsborough does about long-term care.
“The thought of a nursing home, where they don’t have much control on their life, is threatening ...”
Part of the answer lies in more supports for older adults at home, and ensuring quality care in nursing homes, she says.
But Reinsborough feels people no longer see value in seniors, adding, “It’s hard to be human to someone seen as valueless.”
For example, she gives a recent Spectator story about the cancellation of the Seniors Isolation Impact Plan due to a lack of government funding. The program identified seniors “falling through the cracks” and would guide them to community services.
She would like, when there is no other option to a nursing home, to be able to invoke her assisted dying wish.
That could be difficult though because an advance request for assisted death is invalid if she is incapable of making her own decision when the time comes.
“I can’t see myself lying there in a fetal position waiting to die,” she says however.
“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.
Reinsborough cites other serious problems — aside from pain and fear of nursing homes — that spur her desire for assisted dying. They include small pensions, medical services that OHIP won’t pay for, and prescriptions not covered by the Ontario Drug Benefit program.
She also says it is impossible to get into senior housing. Reinsborough and her husband live in a small home they can barely afford to rent on the Mountain. None of those problems will make her eligible for assisted dying, says Dying with Dignity Canada. CEO Shanaaz Gokool says qualifying is not that simple and that “only a tiny percentage of people will have an assisted death.”
But her organization sees Reinsborough’s type of situation all the time. “Anxiety is amplified by the lack of dignity and the lack of finances,” she says.
People developing dementia, for example, don’t want to end up in a care facility, she says. But doctors must ensure people meet the eligibility criteria and that their wish for assisted dying “is enduring,” Gokool says.
“At our end of the spectrum (at Dying with Dignity) ... our focus is on ensuring the most frail and vulnerable have access to all of their end-of-life options.”