By Wendy Porch
Meet Richard and Maya. They’ve been married for 10 years. Richard is 34 years old and works at a national bank. Maya is 35 years old and works as a human resources professional within a medium-sized technology company. They have one child and are hoping, one day, for a second. At least twice a year for the past two years, Richard has had to take time off work to look after Maya, who is living with HIV (human immunodeficiency virus). This year is worse than others, and both Maya and Richard are on their fourth request for time off. Maya, in particular, is starting to worry about job security for both of them. Neither of them can predict when Maya will be sick or for how long, and there is no way of knowing how sick she will be. Maya and Richard are both in their prime working years and neither has any connection to the ‘caregiving community.’
This scenario is more common than you might think. Increasing numbers of Canadians are living with ‘episodic disabilities,’ which are marked by fluctuating—and unpredictable—periods and degrees of wellness and illness. Advances in medical technologies mean that many diseases and conditions are no longer imminently fatal, and disabling symptoms can often be reduced, managed or delayed. As a result, however, more and more Canadians are living with conditions that can be episodically disabling, such as multiple sclerosis, arthritis, cancer, HIV, diabetes and some forms of mental illness.
Living with an episodic disability can make it difficult to keep a job, as time off may be needed to recover from or prevent illness episodes. People living with episodic disabilities can never know when they might be away or for how long. While off work, they may need to be cared for by family/friend caregivers. They might not even think of them as ‘caregivers’ and the caregivers also may not recognize themselves as such, but by providing unpaid care to their loved ones they are also providing an important healthcare support.
To date, most caregiving research, resources and programs are targeted towards two groups—parents of children with disabilities and those who provide care to seniors. Unfortunately, family/friend caregivers of people living with episodic disabilities have so far been largely absent from policy and program developments that target caregivers.
The Episodic Caregiver Support Initiative (ECSI)
The Canadian Working Group on HIV and Rehabilitation (CWGHR), in partnership with the Centre for Families, Work & Well-Being at the University of Guelph, as well as the Ontario Home Care Association, the Ontario Episodic Disabilities Network and Health Gateway, has recently taken a closer look at the needs of family/friends who are caring for those living with episodic disabilities in order to determine who they are and how they can be better supported.
The Episodic Caregiver Support Initiative (ECSI) was funded by the Ontario Trillium Foundation and aimed to develop a model of caregiving that includes the needs of family/friend caregivers of people living with episodic disability in Ontario. The project undertook a number of research initiatives with the goal of uncovering the specific characteristics and needs of episodic caregivers so that government and policy-makers will be better positioned to design programs and policies that meet their needs.
The ECSI project made some interesting discoveries about the family/friend caregivers of people living with episodic disabilities. Episodic caregiving is in many ways different to traditional caregiving.
Unpredictability
Episodic disabilities are very unpredictable. People living with HIV or multiple sclerosis, for example, cannot know when they are going to be ill and might need some help. One day they may feel fine, but the next day they may be unable to get out of bed. Flare-ups can be caused by any number of things: stress, lack of sleep, having a cold or another illness, or any changes to routines can all affect someone’s health. Often individuals living with episodic disabilities may not ever know what triggered a flare-up of their condition. In our example above, for instance, Maya thinks her most recent flare-up might have been caused by a cold she had, but she is not sure. This unpredictability means that it is very hard to
plan. Many community or health support services have wait lists and cannot be accessed quickly and changes from day to day. This inability to forecast which services may be required, and when, can mean services cannot be accessed when they are most needed.
Unpredictable illness can also mean unpredictable work absences for both the person and their family/friend caregiver. Difficulty fulfilling work obligations can in turn cause a range of other issues including housing concerns, childcare disruptions and the loss of savings and can potentially result in having to turn to social assistance. It may become impossible to save for retirement or for a child’s education.
Both Maya and Richard are worried that they will lose their jobs and that they have managed to put aside only a small amount of savings.
Age of Onset
People with episodic disabilities tend to develop the condition in young to mid-adulthood. This means that when they are relying on family/friend caregivers for support, the caregivers themselves are also often around the same age. Caregivers in their late 20s to early 30s are considered relatively young and most caregiving supports do not target this age group.
Young to mid-adulthood is also the time when many people choose to start families and so there is the additional stress of figuring out how to factor child care into managing life on a day-to-day basis.
This is also the time of life often referred to as ‘the prime working years.’ Adults in their mid-20s to late 30s are often trying to establish themselves in their chosen field. Employment progression—and indeed being employed at all—can be greatly impacted by living with or caring for someone with an episodic disability. Richard, for example, thinks the amount of time off he takes in order to care for Maya has negatively impacted his career progression, despite the fact that he is very good at his job.
Episodic Disabilities are Often Invisible
In many cases, the person living with the episodic disability may not show any particular outward signs of being sick. Employers, friends and other family members may not even know the individual has an unpredictable and episodic illness, and so may not be sympathetic when they hear of the person feeling tired or under the weather. This lack of empathy can also transfer to the family/friend caregiver of a person with an episodic disability. The caregiver’s employer may be equally skeptical about the need for time off to provide caregiving support. When Richard calls his workplace to let them know he has to take the day off in order to help Maya, his manager often comments that she “looked fine” the last time he saw her.
Many conditions that fall under the umbrella of episodic disabilities seem to disproportionately affect women more than men. MS, depression and arthritis are all more commonly found in women, which means, in some cases, that men may have to take on more caregiving at a younger age.
A Shift in Values
In order to raise awareness of the unique needs of episodic caregivers, the ECSI project developed a Model for Ideal Support for Caregivers of People with Episodic Disability, which demonstrates the various support needs of these caregivers. The project also developed a number of key recommendations, including:
• Acknowledge that family/friend caregiving is a distinct circumstance for which physical, mental and emotional well-being should be regularly assessed.
• Improve education and awareness regarding caregiving as an activity of younger persons for people living with an episodic disability, which often means the needs are sometimes minimal and other times intensive, and can fluctuate unpredictably.
• Implement caregiving leaves and employee assistance plans that address the caregiving issues of those caring for people living with an episodic disability.
• Reduce the number of individual assessments required to access public and community-based services.
The model and the key recommendations resulting from the ECSI project highlight the fact that there is a role for everyone in improving support. Rather than simply adding more services, what is needed is a shift in our understanding of who is providing care and who is being cared for.
To learn more, visit www.hivandrehab.ca.
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Wendy Porch, M.Ed., is the Disability and Education Specialist at the Canadian Working Group on HIV and Rehabilitation, and chairs the national Episodic Disabilities Network and the Ontario Episodic Disabilities Network. She has an M.Ed. in counselling psychology from the Ontario Institute for Studies in Education at the University of Toronto.
