The grief in knowing you'll one day outlive your primary caregiver as a person with a physical disability

"They're like a charley horse," says Rebecca Wilchynski, explaining the involuntary spasms that take hold of her legs — breathtaking and sudden.

"It's not just in one muscle, it can be in all the muscles or a few," she said. "Cerebral palsy, every case is individualized, and there are definitely more severe cases and some that are less severe. I have the less severe."

Cerebral palsy is a neurological condition affecting body movement and muscle co-ordination, resulting from an injury to the brain. It does not get worse over time, though the exact symptoms can change over a person's lifetime.

As a result of an injury to the brain, cerebral palsy interferes with messages from the brain to the body, and from the body to the brain.

"It's very painful. I have spastic … and athetoid [cerberal palsy], which means they move without me wanting them to, so it can make life a little bit interesting."

Support

Wilchynski, 48, has struggled with cerebral palsy from a very young age, a lifelong condition which has changed and evolved just as much as she herself has within that period of time.

As a child, Wilchynski recalls being able to walk around, with only the help of crutches. Now, as her condition has deteriorated over the years, she relies on her motorized wheelchair to perform everyday tasks, like going to the grocery store and trips to the hospital.

Living with her physical disability has meant that Wilchynski isn't able to work, and she relies in part on social assistance and disability subsidies to survive.

For much of her life, she's also relied on the financial, emotional and physical support of her family. Largely coming from her mother, her primary caregiver who has up until recently made daily visits to Wilchynski's apartment in Charlottetown, where she lives independently.

'She got sick all of a sudden'

But in March, Wilchynski's mother, 83, was diagnosed with multiple myeloma, a type of cancer that forms in plasma cells, a kind of white blood cell. She's been in hospital since March. The family is unsure of when or if she will be able to leave hospital care. For the purposes of this article, Wilchynski's mother has given consent for her daughter to talk about her medical condition.

The diagnosis has caused the intricately-woven support system Wilchynski and her mother have built over the years to become uncertain and fragile.

"She got sick all of a sudden," Wilchynski said. "About three months ago. Her diagnosis says she can live one to three years and if she gets out of the hospital, we're not sure what that's going to look like.

"Therefore, she can no longer do all the things she used to, to help me out."

Wilchynski said her mother's illness, and the unexpected gap in care, has sparked discussions within her family on whether she should make the move to a long-term care facility to ensure round-the-clock care is available.

In her mother's absence, Wilchynski has been paying what she can to a friend to provide home care, one hour per day.

"I'm definitely between a rock and a hard place. I can either starve and live independently, or I can give up my independence and wish I was starving," she said.

"I can roll with the punches but there comes a point where it's like, 'OK, that's enough. Like life has got to get better because my future does not look bright."

Kim Ewart says watching her sister face a lifetime of barriers has been painful.

"It has been a real struggle. It's been a struggle financially and it's been a struggle with accessibility to basic supports and services that she just needs to just function as an adult trying to live on her own," she said.

'They become invisible'

"Basically what Rebecca and I have noticed over the years is, people with physical disabilities that are not seniors —she's only 48 years old, trying to live her life — they become invisible."

Ewart said because many adults living with physical disabilities end up in long-term care to be able to access the care they need, they fade into the background of society, "out of sight, out of mind."

"Rebecca doesn't want to live her life like that, she's too young to be in a nursing home," she said.

"People need to think, you know, 'If I was 48, would I want to live in a nursing home? Would I want to have to ask for permission to maybe have to go out to the corner store?"

Far from uncommon

Wilchynski's challenging circumstances are regrettably far from uncommon, said Marcia Carroll, executive director of the P.E.I. Council of People with Disabilities.

"When it's the parents that are doing the primary care and those parents pass on it's extremely difficult for people with disabilities to be able to move forward if there's been no planning, support and interventions done prior to the caregiver dying," Carroll said.

There was a period in the 1960s leading up into the 1970s in Canada, Carroll said, where there was a move toward de-institutionalizing care for people living with disabilities, taking people out of community-care facilities and institutions and integrating them into community.

However, government funding soon diminished during the 1980s and the independent living model never developed the way it could have, she said.

Parents then became primary providers of disability-related supports, "as opposed to moving their children through a continuum of care to independence," Carroll said.

"And so now there's a number of folks who are in their 50s, they have parents who are in their 80s and both individuals, the parents and the child, are going to have to be looking at some type of long-term care or support to be able to manage."

Lifetime of extreme poverty

If you're born with a severe physical disability, Carroll said, the chances that you will live in extreme poverty in Canada is high.

"For instance, if you had a high level of disability and you were living in the community on your own, your income would probably be $12,000 a year with some disability-related supports on top of that. But when you live with your parents and you stay with a family member that support becomes even more minimal," Carroll said.

"Depending on your needs, your disability-related needs those supports would be paid for, but your income if you're unable to work or engage in the labour market, your income would probably be $250 a month.

"It's staggering, the level of poverty that people with disabilities live in. They are absolutely the poorest people in our communities."

To make sure she can stretch her monthly income, Wilchynski said she keeps a reserve of high protein drinks to ensure that if she can't make it to the grocery store in her wheelchair because her chair suddenly breaks down, or there's a snow storm, or money becomes too tight, she can subsist on them for a little while.

"You can buy the thing for like $11 and sometimes it's on sale for $7 ... so you can eat one of those a day and you have all the nutrition you need."

Anxiety over her future and the gap her mother will one day leave financially and emotionally is stifling, if she let's herself think about it.

"I can't really go there yet, because I'm still fighting for my life because I want to live independently. I'm not ready to throw in the towel yet, I'm determined to make it and I will," she said.

"It would be nice if my mother knew that I was going to be OK before whatever happens, happens to her," she said. "I'm her baby, I'm her last kid and I'm thinking she wants to know that I'm going to be OK."

While the friend who provides Wilchynski with care now is full time, it's only temporary, Ewart said. Come September, she will return to her substitute teaching job, which will reduce the number of hours she'll be able to offer. The deadline has Ewart concerned over how her sister will access the care she needs, without giving up her independence.

"The support she would have had has diminished significantly," Ewart said. "I do what I can but I can't fill my mom's shoes."

'Right to live a life'

Ewart said there is a systemic neglect of people living with disabilities that can no longer be ignored.

"I think it's just part of that whole issue of human value and worth and the right to live a life that is respected," she said.

"There's been a turning of the eye, turning a blind eye toward it."

Both Wilchynski and Ewart each recall instances of prejudice that have been directed toward the 48-year-old while navigating the world from her motorized wheelchair. From being bullied as a child with disabilities in school, to a lack of understanding from teachers, to being "rammed" into by shopping carts by frustrated people out doing errands.

'None of them ever told me I couldn't do it'

Now, faced with the prospect of perhaps having to surrender her independence and live in a long-term facility, Wilchynski said there's nothing left to do but to continue to fight for autonomy and visibility, for the kind of world she wants to live in. Today, that means sharing her story.

"When I was a kid, my cousins had a tree house that I was determined that I was going to get up to," she recalls. "I would climb up and it was just boards nailed onto a tree to get up, so I would climb up and get stuck halfway up. And it would be pretty scary ... and I would scream and my grandfather or my father or my uncle would come and rescue me.

"None of them ever told me I couldn't do it. They would just say, 'Next time dear, let us know so [we'll] be a little closer, so if you need help we can get to you.

"I never made it up the tree house, but I had fun trying."

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