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Tom Sherwood is a retired United Church minister and university professor.
The first time I changed my mother’s diaper and my adult daughter’s diaper within an hour was probably the moment I realized that I was a “caregiver” and not just a son and father.
A caregiver is someone who tends to the basic needs of a person with short- or long-term limitations and who cannot be fully autonomous owing to illness, injury, age or disability.
More than eight million Canadians care for a family member or friend every day, and half of us will be a caregiver at some point in our lives. I will be a caregiver for a long time, the rest of my life perhaps, or as long as I am able.
Mom has since died of Alzheimer’s disease, but our daughter is 43 years old and may outlive us. She has been diagnosed with Dravet syndrome, a severe genetic form of epilepsy that develops in early childhood. She had about 15 months of normal development until one of her seizures lasted for hours and did permanent damage. She has a voice but cannot form words. She can use her right hand but not her left. She can walk but has severe mobility problems, especially after a seizure. And she still has seizures – violent, debilitating, painful episodes that may need a day or two of recovery.
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She lives with what our society calls developmental disabilities, and so do we.
Our life with her and our relationship with her are hard for people to understand if they haven’t experienced having a person they love with such medical issues. But if you have been the parent of an infant and held your baby close to your body for many hours, bonding through the intimacy of love and caregiving, then you have caught a glimpse of our life for 43 years, holding our daughter as a seizure racks her body for one minute, two minutes … longer.
She has her good days, and we spend them together. Her silence can be eloquent. She “tells” us when she is hungry or thirsty, tired or eager, bored or restless. She enjoys music, and we have a way for her to press a big green button if she wants to play some favourite songs. We understand her silent vocabulary of looks, gestures and expressions.
We are very close. Or she has us well trained. But I am 77 and my wife is 74. Our daughter has a life expectancy of many more decades … if a seizure doesn’t kill her next week.
Who will take her then for a sunny-day drive in the country, an activity she enjoys so much? Who will take her to a museum or art gallery in bad weather for a companionable walk until she gets tired or has a seizure?
Who will change her diaper three or four times a day?
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There is hope for our family. We have connected with Total Communication Environment Ottawa, a wonderful non-profit charitable organization that provides care and support for adults with multiple disabilities and special communication needs. They support about 90 individuals and their families – people like us. But there are thousands of such families on the waiting list in Ontario alone.
Caregiving is the next frontier in Canadian public policy. It is vital to our economic productivity and development as a country. Caregiving is part of the infrastructure that Canada needs to maintain, just as much as roads and bridges or railways and public transit systems.
But Canadian caregivers are overburdened. Family members are worn out, aging and dying. People in their 80s and 90s are caring for their adult children. And the amazing individuals who have gone into professional careers of personal support and social service are overworked, underpaid, burning out and rethinking their career choices.
A national caregiving strategy for Canada was proposed last winter. At the Canadian Caregiving Summit, held in Ottawa on Nov. 3 and 4, caregivers, health care leaders and policy makers joined together to continue to build the growing care movement.
Many speakers urged provincial governments to finance programs in support of caregiving. But they also emphasized that much can be done at little financial cost: companies, organizations and the public can build a new culture of behaviour, attitudes, working conditions, time allocation, education and awareness.
That is at the heart of the developing national caregiving policy. And the energy and wisdom of the people working on a national caregiving strategy give me hope.