A burden and a joy: Author Donna Thomson unpacks the duality of caregiving for sick family

Caring for sick and suffering family members changes people, the imprints staying with them well after their loved ones enter long-term care or die. The deeply private experience of caregiving is explored in a new book by Donna Thomson, an Ottawa author and activist who has looked after family members all her life; first as a teenager when her father had three strokes, then with her son, who has cerebral palsy, and most recently with her mother, who died last summer at 96.

The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver – out June 5 and co-authored by Zachary White, an associate professor at Queens University of Charlotte in North Carolina who researches caregiving – looks at how disorienting this time is for families and offers a comprehensive guide for informal carers so they can turn outward to their communities for help.

The message is particularly relevant, given the recent case of a Montreal man sentenced to two years in prison for killing his wife; she had advanced-stage Alzheimer’s and he had cared for her for nearly a decade. The judge agreed with the defence that the husband was an exhausted and depressed caregiver but found him guilty of manslaughter.

The Globe and Mail spoke with Thomson about how caregivers manage burnout, disconnection and loss.

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You describe caregivers as people ‘willing to risk closeness without knowing what will happen tomorrow.’

We have this fallacy that if we work hard enough, if we exert the power of our will, we can cure a person we love. With caregiving, what dies over time is the idea that you can control the health outcomes of somebody you’re looking after, or the aging process or mortality. Caregiving is being in the moment with love for another person, no matter what happens. It’s being witness to suffering, being exhausted and carrying on anyway. It is a role that forces you to be face to face with someone; it pushes at the edges of how to be together. It can be very beautiful.

What do people lose when they’re called into service to give care this way?

So much of what we have planned for ourselves in life doesn’t include caregiving, serious illness or disability. It causes conflicts: “I really should be at work,” “I’m going to be late again today.” It’s a feeling of needing to be in two places at once.

Success and failure take on completely new definitions. If you’re at home dealing with life-and-death issues, there becomes a major disconnect between your values and those of other people, who might value their next vacation or a promotion at work. You become hyperintolerant of people who don’t see your situation the way that you do. It’s part of why you begin to feel so isolated.

You argue that caregiving rearranges our family roles and transgresses privacy boundaries in relationships. How?

We want the person that we’re caring for to be the person they used to be. There’s a huge amount of betrayal that we feel when our parents aren’t who we need them to be. We want to keep pushing a person into the role and when they don’t go there, it’s very frustrating. It can result in resentment, which then results in guilt. It’s a cycle.

With caregiving, you take on roles you never had before. If you start needing to bathe or toilet them or feed them, that is very disorienting because it’s so different from the way things have always been.

Why can strangers who are also doing caregiving provide more comfort than close family and friends?

People who have this shared experience understand the duality of the burden and joy of care and can speak plainly about it. The caregiving community is enormous and the amount of experience, knowledge, innovation and support available there is unbelievable. There’s a powerful desire to help each other and that’s been exponentially increased through technology and online caregiving groups.

For their massive contributions to health care in Canada, caregivers get scant social recognition and certainly no compensation. Why do we overlook their invaluable work?

There’s been an idea that because love and relationship is at the base of family caregiving, that disqualifies it from being taken seriously in light of science, research and clinical care. We’re seeing a shift in caregiver engagement and better co-ordination of informal care and formal care, blended. There is a greater recognition of this reality but it’s slow. There’s a reluctance among some members of the medical community. We need to be taken seriously as full partners in care.

Numerous new initiatives are emerging to help caregivers navigate the health-care system, look after family members at home and find peer support. Some critics feel these are diversionary tactics that put even more of the onus on families instead of on government to support an aging population.

Do we want governments to step up and support families giving care? Of course we do. But we will never have a society any time soon where the government is going to be capable of funding the levels of care that our society needs. We are talking about recognizing the value of caring relationships and responsibilities in families and at workplaces.

People are living longer with complicated illnesses and many want to age at home. More of us are becoming informal family caregivers, with zero training. Should families be talking about this stuff before it hits them?

It’s very difficult. How many people talk about making a will? It’s not something that one aspires to. We buried my mother last summer and I know what it’s like, so I am now talking to my daughter about her caregiving in my old age and what I want that to look like.

Although caregiving interrupts people’s lives, it actually becomes a ‘guide to living,’ you write. How?

Caregiving deepens our humanity. I mean that in the same way that Jean Vanier meant it when he talks about being witness to and abiding with suffering. Sitting in silence with someone who is dying, these experiences are transformational in the same way that having a baby is transformational.

This interview has been edited and condensed.

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