'I am tired of screaming for help': A local family's struggle to care for a loved one with ALS at home

Adam Rodney's care is considered complex, meaning he can’t go to a long-term care home for a period of respite, only to a facility capable of providing the level of care he needs. But his family have been able to find any facility that can take him

After years of trying to start a family, Lindsay and Adam Rodney were over the moon when their daughter was born two and a half years ago. Just one year later, in 2021, the Smiths Falls family’s ecstasy turned to agony when Adam was diagnosed with the neurodegenerative disease ALS (amyotrophic lateral sclerosis).

Lindsay Rodney vowed to do everything she could to keep her husband at home as long as possible so he could see his daughter every day even as the disease progressed.

“I didn’t want to rip him away from her.”

But, despite ongoing help from family and friends, the lack of home care support from the Ontario health system is making it difficult to keep that vow. Rodney is burnt out and frustrated that her pleas for more help are going unanswered.

“I am tired of screaming for help and nobody helping us.”

She is far from alone.

Kim Barry, director of community services with ALS Canada, says Ontario’s health system is failing families like the Rodneys.

“It is discouraging to see that people who are living with ALS can’t get the support to stay at home. It is heartbreaking to know this is not a one-off situation.”

The inability to get adequate, consistent care at home and the resulting burnout have left some with little option but to drop their loved ones off at hospital emergency departments — and the situation is getting worse, Barry says.

Rodney says people within the health system have suggested she do the same if it gets to a point where she can’t take it anymore.

The suggestion infuriates her.

“I don’t want to do that. Adam is my husband. He deserves to be treated with dignity and respect, and I do not believe that that is dignity,” she said. “I am trying to ask for help before I get to the point where I feel like I have to drop him off at emergency, and nobody is listening.”

Adam, 44, is now largely unable to move, is fed through a tube and uses eye-gaze technology to communicate. He uses a special machine, called BiPAP, to help him breathe. He is transferred from his bed to a power wheelchair with the help of a hydraulic lift, using equipment loaned to the family through ALS Canada’s equipment loan program.

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The family is allocated personal support worker (PSW) and nursing care through the province’s home and community care system. The hours approved for PSW care are nowhere near what is required to care for Adam, Rodney says, and even those hours can’t be filled because of severe staffing shortages within the agencies that make up Ontario’s threadbare home-care system.

Friends and family have stepped up to help.

“We are very fortunate, but they are filling in the gaps that the health system isn’t providing,” Rodney says.

Barry of ALS Canada says that is frequently the way families manage.

“A lot of it falls on families.”

Even with help, Rodney says she is handling 70-80 per cent of her husband’s care. She had taken a leave from work but had to return to re-qualify for family caregiver benefits that had run out.

Since the spring, Rodney has been trying to find respite care for her husband to allow her to rest and recuperate. The request has still not been filled, in part, because of a lack of facilities able to provide the level of care he needs.

His care is considered complex, meaning he can’t go to a long-term care home for a period of respite and can only go to a facility capable of providing the level of care he needs. 

Rodney says she hoped he could go to St. Vincent’s in Ottawa, but the family learned there could be a multi-year wait for that. She was later told he could get respite care in Kingston, but then found out they couldn’t offer care for Adam there because staff members were not properly trained.

It has been six months since she began asking for respite care.

“It is now September and the longer it drags on, the more time I need to recuperate. I am getting burned out.”

Adam’s brother, Ottawa teacher Mark Younger-Lewis, spends up to a couple of nights each week helping care for Adam: turning him over, taking him to the bathroom, being on call.

He, too, is frustrated and angry by the lack of help the family is receiving from the health system and that, in recent months, hope for respite care has repeatedly been dashed.

“A terminal illness is terrible in itself, however, to be continually let down by a system that is supposed to be there for you in your time of need … it is beyond disappointing, it’s criminal.”

Rodney says someone in the home-care system suggested the reason there were not more places capable of caring for people like Adam with complex care needs was that medically assisted death is now legal and not many people got to that point.

She said the comment made her feel awful.

“It basically says my husband should have died by now because our health-care system can’t take care of him. That is what it makes me feel like, and I don’t think it is fair. He deserves the best care possible, like anybody else.”

Barry says the situation for families in Ontario trying to care for loved ones at home is getting worse because supports are inadequate to begin with and increasingly unreliable with critical staff shortages in home care.

“We have clients being admitted to hospital because there is nowhere else to go, because they can’t get consistent PSW support at home,” she said.

“The system needs to do better. This is a running theme we are hearing more and more. We are hearing dramatic stories.”

The system of home care is not designed for people with complex, life-limiting illnesses, she said, and there are not enough PSWs to fill even the less-than-adequate allotted hours for home care.

She says some families are spending upwards of $100,000 a year for private care in order to keep loved ones at home.

Barry says she is urging the province’s Ministry of Health to make investments in PSW support, including wage increases, and other options for people with complex illnesses.

“The system is failing a lot of people dealing with ALS.”

The Ontario government has said it is investing $1 billion in home care services over three years in addition to money already announced to support up to 28,000 post-acute surgical patients and 21,000 patients with complex health conditions every year.

In a statement, Home and Community Care Support Services for the Champlain region acknowledges that “health human resource challenges” are a problem.

“We understand this is a frustrating and difficult situation, and continuously work with our service provider organizations to support the recruitment and retention of PSWs to help patients who rely on these supports.”

Rodney says she is tired of hearing that the provincial government wants to help people stay out of hospital and in their homes.

“You want people to stay in their homes? Provide them with support so they can do that.”

More information on the Rodney family is available on Instagram: @therodneyfam.