The organization I volunteer for supports young carers and their families. Young carers may support a family member with a chronic physical or mental illness, chronic disease, dementia or a sibling with an illness. They might support their parents who are new to Canada who require translation services at appointments or a young person providing care to other siblings while a parent was caring for a family member. What I like about the Young Carers Initiative is that the language that is used is family friendly. Terms like "strength based practice", "holistic', "inclusive", and the fact that the organization has always viewed the families they service to be "caregiving families" drew me to the group. This language lends itself to the reciprocity of care that exists in most families. Finding balance between the person who needs care and the person providing care is easier when you look through a lense that aims to capture care that goes in both directions. There is a distinct need to balance the needs of both caregivers and care recipients in providing caregiver supports. We need to ensure that we are not implying that care only occurs in one direction or we are further alienating the families we aim to serve.
Tuesday, May 28, 2013
In the CBC interview (link posted below) my daughter and I both share candid recollections of what the early days of living through a devastating Multiple Sclerosis relapse were like.
While CBC did an excellent job of capturing how my illness personally impacted my daughter the impacts had profound ripple effects that challenged many other people. My children felt the impacts of my illness most personally. They felt the uncertainty and unpredictability of my illness as personally as I did. They rode waves of sadness, anger at the disease, at its intrusion into our autonomy, and anger that I wasn't able to be the solid rock they had always counted on and needed. When a person experiences the symptoms and diagnosis of a chronic condition the whole family is impacted in a variety of ways.
The impact of my illness rippled out from my small nuclear family to my parents, to my friends and to my coworkers. My mother quit her job to help care for me and my kids. Without her incredible support I would have never made it out of hospital and home. She came to my home everyday; she cooked endless meals, did laundry and cleaning. My ability to keep up with day to day chores had been dwindling for sometime and there was tons of work that needed to be done. My mom and dad coordinated a ramp being built to enable my return home from hospital long before I was ready to leave. Without their endless care, encouragement and support I don't know how we all would have made it.
Note: We are sharing this story with purpose. We would like to shine a light on the strengths and needs of families living with chronic illness to promote the Young Carers Movement. As members of Young Carers Canada we support the development of supportive programs directed at Young Carers and their Families. In our area there is programming available through the Young Carers Initiative in their program The Powerhouse Project. This programming is available in Niagara and Haldimand-Norfolk. Across Canada there are other programs and services available in select areas but a more comprehensive nation wide strategy is necessary. These programs provide support, information, respite, homework help, and skills training.
With that as an introduction here is the story as captured by CBC Radio:
The story of Young Caregivers