Like in many other places around the world, COVID-19 has had a devastating impact on Ontario’s long-term care homes. As of April 8 2021, 3,755 care home residents and 11 home staff have died of COVID-19. In addition to the tragic loss of these lives and the many thousands of people who were infected with COVID-19, residents and their caregivers faced another trauma: separation from each other. At the onset of the pandemic, the Ontario Ministry of Long-Term Care made the tough – and somewhat unpopular – decision to close homes to all caregivers and visitors. For the first time ever, caregivers were shut out of their loved ones’ homes. While this was done to keep people safe, many felt that the closure went on far longer than needed. The trauma experienced by residents and their caregivers has and will have long-lasting impacts.
After much work and input from Family Councils Ontario and other organisations, the Ministry released a revised visiting policy in September 2020 that recognised caregivers as essential visitors. Under this policy, each resident (or their Substitute Decision Maker as per the The Health Care Consent Act) could designate up to two caregivers who would be permitted into the home to provide physical or relational care. Even in an outbreak, one of those two caregivers could visit at a time, for as long as desired, without needing an appointment. This was heralded as a milestone in resuming normal, resident- and family-centred care in homes. This isn’t to say the plan was without criticism or challenges.
Some families, home staff, and other stakeholders felt that this change came too late. That residents had already suffered immensely – or fatally – due to the separation. Others felt that it was too soon and that homes needed to be protected from COVID-19, even if that meant caregivers being “locked out”. However, some care providers were visionaries and chose to embrace caregivers as an essential part of the team. Organisations such as peopleCare adopted the Caregiver ID program and train and recognise caregivers accordingly. Their work has set a high bar for other organisations to live up to. While all homes are subject to the same guidance and requirements, not all have embraced caregivers like this. We are still working with home leaders and caregivers to find ways to safely, meaningfully, and permanently support caregiver presence.
The essential caregiver role has made an incredible difference to people receiving care and their families. Now, caregivers are given the recognition they deserve as valuable members of the care team. Not only do caregivers visit to support emotional, social and cognitive wellbeing, but they also provide hands-on care. Residents benefit from the care, attention, and love of their family. Families benefit from being there to give – and receive – love and care. For home staff who have embraced the essential caregiver role, they report improved morale from the support and engagement with people they consider part of their team. It enables them to re-direct time and care to residents who require more support, and overall brings the community and home-like spirit back into the building.
If a home was unsure or reluctant to offer the role, I would encourage them to think about what kind of workplace they want: one where people are embraced for their contributions, or one that creates an ‘us vs. them’ mentality? I’d ask: is this a response out of fear? What ways are there to alleviate the fear and risk (e.g. providing Personal Protective Equipment and Infection Prevention and Control training to caregivers)? What value do caregivers provide? What is your staff workload like with and without them? Above all: what do your residents want? If it were your loved one, what would you want for them? Put yourself in the shoes of your residents and caregivers and do right by them.
If a relative was unsure or reluctant to ask for essentials caregivers to be in the home I’d ask, what are you afraid of and what can you do to mitigate this fear and risk? I’d encourage them to talk to their peers and the home staff to find a way to balance risk with access to their loved one. Above all, I’d remind them of how important they are to the resident and how their presence is missed.
Ontario hasn’t done this perfectly, not by far. Caregivers are still advocating for changes to be made to better protect their loved ones, themselves, the home staff, and their broader communities. But, we have made strides towards re-integrating caregivers into our care home communities. Because if there’s one thing I know, it’s that caregivers want to be with their loved ones. Those caregivers will do everything in their power to keep themselves and their loved ones safe from COVID-19. Because this is a crisis unlike any the sector has seen before, but it’s only by working together that we can get through it.