Unreliable home care: ‘Healthcare’s other dirty secret’

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A Brant County woman tending to her husband’s health needs for years says she feels abandoned by the home-care system.

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The inconsistency of getting personal support workers to their house finally wore down Jean. About a week ago, she placed John in a local long-term care home.

“It was because of the lack of care we were getting,” says Jean, who asked that her real name not be used. “It was just terrible.”

While the pandemic has shone a spotlight on problems with long-term care, the ills of the home-care system remain hidden, she says.

“This is healthcare’s other dirty secret,” says Jean.

“For those of us who want to see our loved ones die in familiar surroundings with people they love, we end up with PSW no-shows multiple times a week, leaving people who are dying stuck in bed or in dirty incontinence products.

“The system is broken.”

Jean says she has complained to several agencies that send PSWs for home care – one immediately discharged her husband as a client. And, through friends or in person, she has taken her concerns to politicians on multiple levels.

“I just get canned responses telling me to do all the things I’ve done already or telling me how PSWs are being fast-tracked for long-term care homes. No one is recognizing the at-home crisis. ”

The Expositor sought a response on Tuesday from HCCSS to questions about the impact of the PSW shortage on home care. A spokesperson said Friday that Jean and John faced a “frustrating and difficult situation” but HCCSS is working to recruit and retain PSWs.

“HCCSS and our service provider organizations work with families on contingency plans in the event of an unplanned absence,” said the spokesperson.

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“This may include accepting care at a later time or families may deliver the care depending on the contingency plan.

“Concerns… when reported are followed up on with the service provider agency. We encourage patients to bring complaints forward to us so we can address them and work to find solutions together. ”

Diagnosed with multiple issues that include early-onset Alzheimer’s, cancer and multiple sclerosis, Jean’s husband of 21 years requires help to get out of bed and needs daily personal care.

Jean says that John was deemed a “priority No. 1” client, with PSWs scheduled to visit each morning and evening.

After several falls by John that required Jean to call 911 for help getting her 185-pound husband off the floor, she obtained a mechanical lift, which, she says, is supposed to be used by two PSWs.

“I should have been the backup person only if two people couldn’t come but, instead, I was always the second person,” says Jean.

Recently, at least two or three times a week, Jean would get calls telling her no worker was available to visit. Sometimes, there would be no call and no one would show up.

“I was told they were pulling staff off of home clients and sending them to long-term care and assisted living centers,” says Jean.

She says some PSWS needed her to show them what to do.

“I’ve had PSWs show up who don’t know how to put in false teeth.”

Jean says she is grateful for the day and stay program offered at the John Noble Home, which provides activities for clients and allows the caregiver time for themselves. The program permitted Jean to continue working.

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“There needs to be more out there for those of us spouse-caregivers who aren’t retired and not near retirement. This has taken a toll on my health now. My doctor finally told me I could not go back to work. ”

Jean shared her story with friends and heard more reports of unreliable scheduling of PSWs and other problems, including some workers shortchanging clients on their care.

“We’ve had some fantastic PSWs, too. They’re professional, reliable and supportive, but the good ones are so hardworking they’re burning out just as fast as the caregivers! ”

Ontario has a major PSW shortage, says the CEO of the Ontario Personal Support Workers Association.

Miranda Ferrier says that, when COVID hit almost two years ago, some clients opted not to receive care in their homes and many PSWs moved to higher paying long-term care jobs or took advantage of federal pandemic relief programs.

“Here we are two years in and we don’t have all of them coming back. Some prefer to stay in long-term care where there is a $ 3 (an hour) enhancement and they’re making good money and some felt burned out. ”

She says the demand for PSWs is not being met despite training programs being “packed.”

The problem, Ferrier says, is the program’s lack of accountability.

“It’s free and you get paid for your placements but then you don’t have to stay in the job and you don’t have to pay it back. A lot of people are finishing their clinical placements and saying ‘Oh, I don’t want to do this’ and going off to work at a factory or in Tim Hortons. ”

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Ferrier says many are “clueless” about the role of a PSW.

“It’s one of the most difficult jobs in healthcare. It’s taxing physically and mentally and we’re seeing a huge increase in mental health and addiction issues. ”

She says that agencies who take responsibility for a client, such as John, and then don’t send PSWs for scheduled appointments are essentially abusing clients. If the same thing happened in long-term care, there would be serious consequences, she says.

“It’s abandonment. The agency has a duty to send someone, although it doesn’t have to be a PSW – it can be a nurse or home support worker or even a supervisor. ”

Both Ferrier and Jean agree that changes are needed with home care.

“Supervisors are not supervising: they need to be out in the field checking that the work is being done,” says Jean. “Three times with PSWs from different agencies John fell and not once did anyone call to check if he was OK even though two of those falls involved an ambulance.”

Jean also cites the “terrible revolving door” of PSWs caring for a client.

“You just can’t have a parade of 12 different people coming to care for an Alzheimer’s patient,” she says. “And there are huge inefficiencies where people are wasting time on travel.”

Jean says politicians learned nothing from the inattention to long-term care concerns over the last 20 years. And now the problems are repeating themselves in home care, she says.

“They’re creating two victims in crisis – the patient and the caregivers.”

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@EXPSGamble