Family caregivers speak: Family caregiving for children with serious medical conditions for which there is no cure
January 12, 2010
Hosted by Dr. Gordon Atherley
Two mothers of children with severely disabling, incurable medical conditions share with us their experiences as family caregivers. One of them recalls her memories of her child, who died three years ago. The other describes the changes in her child’s condition, and how these affect her family caregiving. The host, a doctor, describes the medical impact of the conditions. The mothers show us what it really means to be a family caregiver, the person who provides care when everyone else has gone home. They tell us about the things that sustain them in their family caregiving. They talk about the effects on the family as a whole, including the brothers or sisters of the child. And the happiness they all experience. They explain the things that enable them to cope. The advice they offer family caregivers caring for children with grievous, incurable conditions. They tell us what changes they would introduce if the government put them both in charge of family caregiver support.
Family Caregivers Unite!
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Family caregivers are the people who provide care to partners, parents, children, brothers, sisters, cousins, friends, neighbors and even co-workers. They are the people who provide care when everyone else has gone home. They are the people who organize the functioning of the home for the person with special needs, and for the family as a whole. They are the coordinators of care, the managers of appointments, the preventers of loneliness, and the makers of decisions even to the point of Power of Attorney. And they are so often people who themselves are burdened with their own health challenges and who may be in only marginally better health than the persons to whom they are providing family caregiving.
Dr. Gordon Atherley
Dr Gordon Atherley holds the British equivalent of the Canadian PhD and MD degrees, and LLD, Honoris Causa, from Canada’s Simon Fraser University. His awards include Fellow of the Royal Society of Arts, UK. His medical specialties are occupational medicine and public health.
As first President and Chief Executive Officer of the Canadian Centre for Occupational Health and Safety, the Canadian equivalent of the US National Institute of Occupational Safety and Health, he led the creation of Canada’s electronic information service in occupational health and safety, now used in more than 40 countries.
In academia, he held senior, tenured, full-time positions, including departmental chair, in university faculties of physics, engineering, and medicine. He is the author of a textbook and numerous articles and publications.
Since retiring from medical practice, he’s built up Greyhead Associates, which critically researches the safety, effectiveness and fairness of health services for persons with special needs.
Through Virtual Care International, a company of which he’s President, he’s involved in providing sensible technology to family caregivers to help them with their responsibilities, workloads, and concerns.
Now an activist, he urges family caregivers to unite because, more and more, it’s not just their families who depend on them, it’s also the healthcare system as a whole, as it struggles to meet more and more needs of more and more people.