Sunday 1 November 2020

National Caregivers Month in a Year Like No Other

This morning I looked at all my posts from early November since I began writing this blog (eleven years ago). At this time annually, to mark the beginning of National Caregivers Month, I would pen something I thought would help caregivers feel seen and valued. This year I think we need to hear a different message.

Ask most caregivers what makes them continue in their role and they'll likely shrug saying, "I don't know... love and necessity, I guess." This year, our love combined with the unpredictable necessities posed by Covid19 have not been enough to keep us going. Many caregivers have been shut out of long term care residences, unable to provide daily essential care to loved ones. Older adults or people with disabilities who need assistance to eat have been casualties of under-resourced facilities where, without families members at the bedside, go hungry. Without someone to feed them, dinner trays remain untouched on the hospital table.

There has been a clarion call to rebrand us from 'visitors' to 'essential family partners in care'. We haven't changed, but the language has. And that's because Covid has revealed to the world what we've known all along: that families constitute the army of laborers who perform the vast majority of personalized human care for people with dependency needs at home, in hospital and in long term care residences. Health care systems simply collapse without us. In health care residential settings, our loved ones suffer and die without us - if not from Covid, then from isolation, dehydration or malnutrition. At home, for a myriad of reasons related to the pandemic, families have largely been abandoned without respite to shoulder the full burden of care.

Caregivers need a new deal with health care systems and with communities. We need to organize for recognition and support. We need to exercise our human RIGHT to care for our loved ones and to be supported in that role wherever we are. This is going to take a multi-pronged approach. 


If we are going to join forces like never before with front line health care workers, we will need training in infectious disease protocols. We will need the SAME training as staff get in hand washing, donning and doffing personal protective equipment and best practices in maintaining sterile surfaces. We will also need health care systems to RECOGNIZE that training. 


Many jurisdictions today require Covid testing every two weeks for non-symptomatic designated essential family caregivers whose loved ones reside in long term care. We need a mechanism for accessing that testing in a way that is fast tracked, community based and free for caregivers. 


We need a rights based approach to recognizing our role that is written into government policy. This serves the purpose of putting a stop to an adhoc response that varies regionally and from home to home, leaving some families locked out while others can support their loved one at bedside without interruption. 


It used to be that patients and families were only 'subjects' in research projects. Not anymore. There's a new movement to include those with lived experience of illness, disability or ageing to partner in research and even act as co-authors in papers for academic journals. This matters because suddenly family caregivers are influencing both WHAT is researched and HOW it's researched. 

There's an old adage in research that says it takes 17 years for a discovery made in the lab to hit pharmacies or hospitals. Covid19 and patient/family partners in research won't wait that long. We're seeing the public insist on safe protocols, but also much faster impact for the implementation of evidence-based treatments. I am proud to be a co-designer and co-instructor of a course at McMaster University called Family Engagement in Research. Caregivers have a new role to play as partners influencing health and innovation in both universities and in society. 


This National Caregivers Month, I want to salute all those who are working to address these issues and get a better deal for family caregivers in Canada and the USA. The Canadian Foundation for Healthcare Improvement has created a BETTER TOGETHER CHANGE PACKAGE for family caregivers and health care providers. It offers a roadmap to ease tensions between patient and family centred and partnered care, and infection control and safety. I am working with the McMaster University Department of Continuing Education exploring the possibility of creating free video training materials for caregivers in infection control protocols. I'll post more on that initiative as our planning evolves. Stateside, Caring Across Generations  is exemplary in its political action agenda advocating for caring democracy and family caregivers' place in it. The same can be said of the American Association of Retired Persons (AARP). In Ontario where I live, MPP Lisa Gretzky has tabled the More Than A Visitor Act, proposing to enable families of those living in congregate care settings access to their loved ones in group homes across the province. The Ontario Family Caregivers Organization in collaboration with the Change Foundation has developed a scheme to recognize essential family partners in care with a 'Caregiver Badge'

We need all these approaches and more this National Caregivers Month, 2020. We are an army of hard workers who are motivated by love and necessity. Let's mobilize with our allies and fight this virus. Along the way, we'll invent a better deal for family caregivers now and in the future. 


Elizabeth said...

You are, as always, relentless in your fight for the rights of caregivers. Thank you.

The Caregivers' Living Room said...

We are an army of passionate advocates and we are a strong social movement. Thank you for your comment!