Caregiving, vulnerability, and COVID: What did you expect?

Most mornings I read the Globe and Mail before tackling my day. Today’s headline outlined the spiralling death toll due to coronavirus in long term care facilities. Over the last several weeks there have been numerous articles discussing the impact of COVID-19 on people with disabilities and underlying health conditions, particularly those who rely extensively on front-line health care services. There is no doubt that our most vulnerable members of society are paying a very steep price during this pandemic. And by vulnerable members I mean both those who live with significant health conditions, and their caregivers; the two are deeply interconnected.

A few years ago I was part of a think tank exploring the needs of families caring for people with significant health challenges. The meeting gathered key stakeholders in our community, including health care agencies, government officials, people with disabilities, and caregivers. At the time I was the mother of a profoundly disabled teenager who was medically fragile. During the meeting, we were asked to provide feedback about how care could be improved in the community.

There were the predictable answers. Families need more respite. Communication between health professionals and teams must be streamlined to improve care. Waiting lists for services must be reduced, or ideally, eliminated. The transition between paediatric and adult care must be improved.

As the conversation continued I raised my hand and offered a different answer. I asked the government officials in the room to ensure that all the front line caregivers involved in my son’s care had a full-time job, with reasonable pay and benefits. I asked them to end profit based home health care and ensure health care dollars were spent largely on health care.

At the time my son’s home care team involved numerous health care professionals, but was dominated by practical nurses and personal support workers. Every single one of the nurses and support workers caring for my son worked part time, for multiple agencies. None had benefits. Since I also paid for some of my son’s care privately I knew that the front line care providers received less than half of the fees charged by the agencies. To give you an example, for private practical nursing I was privately billed $45/hr. The nurse received about $20/hr. In short, our publicly funded health care dollars were lining the pockets of private, profit-driven health care agencies.

The nurses and PSWs on my son’s home health care were usually responsible for multiple clients each day. Their travel time between patients was not compensated. Their days were tightly packed with clients, which at times translated to rushed care. All caregivers obviously worked in multiple homes, but many also worked in long-term care facilities as well, with the hope of eventually securing a coveted full-time position. As you read the COVID news describing the caregiving chaos in long term care homes, remember these jobs were considered MORE desirable than home care work by many of our home care team members because they at least provided a modicum of stability.

Asking for full-time jobs with reasonable working conditions for my son’s health care team was in part motivated by a desire to see the most important people in my son’s life well cared for. But, if I am being honest, the primary reason for my request was to optimize my son’s care. Health care providers moving between multiple environments move infections between environments – a huge risk factor for my son. Poor working conditions often translated to very high-turnover among my son’s care team leading to significant gaps in his care – both in terms of actual people providing care, but also in terms of the necessary knowledge of his care.

In our home we ultimately addressed these issues by self-administrating my son’s funds and privately managing his team, eliminating agencies altogether. Overnight my husband and I became human resource managers, responsible for scheduling, hiring, supervising, and paying our team. We employed three full-time team members, augmented my son’s care with a couple of part-time caregivers, and paid them reasonable wages. High staff turnover was eliminated. Only one part time team member worked at another site. There is no doubt my son’s care was vastly improved. However it must also be noted that this strategy is often only available to affluent families with significant resources, and an unusual ability to navigate and manage “the system”. I need to acknowledge my privilege.

Prior to establishing this home-team approach, there was no doubt that the less-than optimal working conditions of my son’s care team had a direct impact on the quality of my son’s care. Not to diminish the caring of the people involved. All were devoted, hard-working, wonderful people. But the environment in which they worked made it impossible to provide optimal care – even conspired against it.

It was very clear that my request to the government officials was unpopular. While other requests from stakeholders generated lively discussion and feedback from ministry officials, my request was met with stony silence and immediate dismissal. The ministry official leading the discussion simply asked for another comment from the audience. No response of any kind was offered.

So as I read the morning’s headlines about how our most vulnerable members of society and their caregivers are contracting COVID at an alarming rate I am not surprised. What on earth did people expect? Care has always been undervalued, ignored, and hidden. We expect care providers to care out of a sense of duty and deep well of compassion – and most do – often at considerable cost to themselves. COVID-19 is simply exposing the staggering costs caregivers often pay to ensure our most vulnerable members of society live dignified and safe lives. Our society’s willingness to value profit above all else, at the expense of the most vulnerable people in our communities, and the people who love and care for them, is our collective shame.

Published by extremecaregivingblog

Wife, mother, extreme caregiver, friend, knitter, soccer player.

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