Written by Isabelle Leslie
The beginning of April has two very important days to reflect upon; Invisible Work Day and National Caregiver Day. It’s a coincidence that they occur very close together, but it’s fitting that they do. On National Caregiver Day we recognize the many people who are caring for someone diagnosed with a life-limiting illness. On Invisible Work Day, we recognize the work that is performed for little to no pay by family caregivers, which is typically taken for granted and unrecognized in the family and in society at large. Historically invisible work is work that was done by women in the home while men worked outside of the home for pay, but today, invisible work is still typically done by women even while women have their own full-time jobs and careers. To reflect on Invisible Work Day and National Caregiver Day, this blog post will talk about family caregivers in Canada, the lack of support they receive, and will provide some resources for you to provide to them or to read yourself.
As professionals in palliative care, we see a lot of invisible work done by the family members of our patients. At home, 80% of patient care is provided by family caregivers. Estimates in 2002 suggest that family caregivers provided $25-26 billion worth of care and incurred $80 million in out-of-pocket expenses annually – since then the costs have only increased. Family caregiving thus requires individuals to donate significant time, energy, and resources for providing personal care or even simply helping with household tasks. This becomes difficult when combined with a caregivers’ own job, as caring for parents and spouses could take between 4-14 hours per week, but can take upwards of 30+ hours per week. To provide these hours of care, 15% of caregivers reduce their work hours, 40% miss days of work, 26% take a leave of absence at work, 10% turn down job opportunities, and 6% end up quitting their jobs. This disproportionately affects women, as 56% of family caregivers in Canada are female.
The article “Structural impact on gendered expectations and exemptions for family caregivers in hospice palliative home care” by Sutherland et al. (2016) discussed the gendered expectations within family caregivers. Namely, the expectation that women should be the main caregivers because “women in general have a nurturing role… a motherly role,” and that women would want to provide care following this gender norm (p. 5). This study showed that if women did not fit the gender norms by providing care, they were met with social disapproval, but if men did not provide care, they were not met with disapproval – it was expected that they wouldn’t be involved. In fact, if men were involved in care, they were explicitly rewarded. The social disapproval of a woman not providing care occurs even if said woman is ill-equipped to provide care or is unable to provide the necessary care. This view constrains women and raises more barriers to asking for help. For example, this quote provides a nurse’s perspective:
When I see a patient and the wife is sitting there and not saying anything, I almost look at that as a negative thing. I shouldn’t, but I do, because I’m so used to the wife adding her information and giving more information, so that when you have situation where they don’t…you just kind of find that it’s strange.
Melanie, nurse from (Sutherland et al., 2016)
Women who are providing care may be reluctant to admit they need help to provide care, as that would mean admitting they have failed at being a ‘good woman’, that their ability to nurture, to care for someone, was inadequate. This means that an offer of help from a home care provider may be denied even if it is obvious to the home care provider that the family caregiver is becoming exhausted or overwhelmed. Sutherland et al. (2016) also state that home care providers are hesitant to proactively provide care and will instead wait until directly asked by the family, which typically only occurs when the family’s energy and resources are exhausted. A family caregiver may push themselves to continue to provide care up until they are ‘relieved from duty’, for example, when a home care provider begins coming to the home regularly, or when the patient is admitted to a facility for care. Because the family caregiver is exhausted, they may pull back from providing care or even visiting once they know their family member is cared for. The family caregiver needs time to recharge from the time they have spent providing care for their family member. It is important to understand that it isn’t that the caregiver has ‘stopped caring’, it’s that they may have developed compassion fatigue and need time to recover and to take care of themselves, and any other things that may have been left by the wayside while providing care for the family.
It is important for us as professionals to understand the work and the effort these unpaid volunteers provide for their families. Providing end-of-life care for family members greatly increases emotional stress and the level of anxiety felt by the caregiver can be higher than that of the patient. Caregivers frequently report feelings of helplessness, vulnerability, and a vivid awareness of impending death and an uncertain future. Family caregivers also experience social isolation as they have less and less time for themselves outside of work and caregiving. Many family caregivers are so focused on providing care for the dying person that they do not seek out help for themselves, either for emotional support, or physical help with household tasks or providing personal care. Family caregivers may become exhausted by the extra physical burden of providing care on top of their normal tasks, the 24-hour responsibility they have taken on, or even by the fact they have lost time to take care of themselves – to eat, to rest, or even to attend their own medical appointments. One way to support family caregivers, whether it is when they say they do not need any help with tasks, or after their family member has care and they do not visit as often, is to provide them with opportunities. Opportunities to talk, to reflect, to relieve some of the emotional strain of caregiving to someone who understands, or even simply providing them with caregiving resources. It is important to remember that in Hospice and Palliative Care, the unit of care is the person and the family.
Here, I will introduce you to a few resources that you can provide to family caregivers, or even look through yourself! Carers Canada has three webinars occurring on April 4th on the topic of Supporting Caregivers throughout their Caring Journey, titled ‘Valuing the Voice of Caregivers and Patients’, ‘Grief from the First Step’, and ‘Conversations throughout the Journey’. I encourage you to go to their website to read the outlines of these webinars and consider registering for them. Caregiver Action Network has a great 10 tips for ‘family caregivers’ page, as well as many other helpful pages such as ‘Family Caregiver Toolbox’, and ‘Care Chat’ which is an online forum where caregivers can connect to other caregivers and ask questions. They also have a Frequently Asked Questions section to browse for information. Family Caregivers BC is a wonderful website full of resources, offers a quarterly newsletter for family caregivers, and also has a toll-free Caregiver Support Line where they “take time to listen to you which distinguishes us from the busy health care providers you may encounter.” The Ontario Caregiver Organization is a similar resource – it has a library of webinars for caregivers, as well as a newsletter and a live chat and helpline for support. Finally, there is Best Practice Caregiving, which is a database of programs/courses dedicated to supporting caregivers of people with dementia.
List of Resources
AFEAS, A. féminine d’éducation et d’action sociale, & CIAVTI, C. inter-associations pour la valorisation du travail invisible. (2021). Invisible Work Counts! Recognizing the Invisible Work of Parents and Caregivers By Measuring It and Including It in Canada’s GDP. https://travailinvisible.ca/wp-content/uploads/2021/01/Manifeste-Travail-Invisible-ENG-2020-FINAL.pdf
Canadian Centre for Caregiving Excellence. (2022). Giving Care: An approach to a better caregiving landscape in Canada. https://canadiancaregiving.org/wp-content/uploads/2022/11/CCCE_Giving-Care.pdf
Canadian Cancer Action Network, Canadian Home Care Association, Carers Canada. (2017). Advancing collective priorities: A Canadian carer strategy. https://cdnhomecare.ca/wp-content/uploads/2021/08/Advancing-Collective-Priorities_2018-b.pdf
Decima Research Inc. (2002). National Profile of Family Caregivers in Canada.
Sinha, M. (2013). Portrait of caregivers, 2012.
Stajduhar, K. I. (2013). Burdens of family caregiving at the end of life. Clinical and Investigative Medicine. Medecine Clinique et Experimentale, 36(3), 121–126. https://doi.org/10.25011/CIM.V36I3.19722
Sutherland, N., Ward-Griffin, C., McWilliam, C., & Stajduhar, K. (2016). Structural impact on gendered expectations and exemptions for family caregivers in hospice palliative home care. Nursing Inquiry, 24(1). https://doi.org/10.1111/NIN.12157
Turcotte, M. (2013). Family caregiving: What are the consequences? Insights on Canadian Society.