What Is Respite, Exactly?
Today I am pondering the blurry edges of some care-categories. Palliative Care. Respite Care. Home Care. PICU Complex Care. And whether these are distinct categories.
In thinking about this issue I came across a nearly 12 year old CBC article from British Columbia. It’s a powerful tale of the lived experiences of a close family of three. The child in the family lived with a severe disability, at home, in the care of her mother and father. Her parents were interviewed by CBC about what had clearly become a care crisis.
“We’re trying to give her the best life, because she doesn’t have a long life to live. We are trying to enjoy her as best we can.” Kaitlyn’s father told the media this poignant fact in a 2008 interview with CBC, adding “there’s nothing we wouldn’t do to give her the best care she can have.” That interview (which is where the below photo is from) can be found here: https://www.cbc.ca/news/canada/british-columbia/b-c-cuts-respite-for-family-of-severely-disabled-child-1.737947
In this difficult interview, the two caregiving parents also spoke about their government-funded caregiver who came to help out with Kaitlyn’s care during the day, as well as the fact that they were usually left to provide for her complex medical care needs on their own at night.
Meanwhile both mother and father had full-time jobs in addition to their roles as caregiving parents. Suzanna worked during the day, while Jeff worked a 10 hour evening shift. He relayed that he slept from 2 am to 6 am at which point Suzanne would leave for work. This raises an issue tied to the respite vs care issue that I feel needs to be addressed, and that is what this post is about.
Who supports the caregivers?
Another point these caregiving parents make in this interview is that they both pay taxes but that they’re are not seeing their tax money directed towards people like them, namely folks who have medically complex children to care for at home. They pointed out they know that they are not alone in this regard.
When asked about this situation at the time that this article was written CBS reported that the CEO of Community Living B.C. “refused to talk specifically about the Pekrul case” but according to this CBC piece, the CEO stated that his “priority was to assist families with the most urgent needs.” Perhaps that needs to be fleshed out more in policy.
How is urgent defined for a start?
“Obviously we are not providing services to everyone,” said Rick Mowles the CEO of Community Living BC . “But you know, we like to think that we are dealing with all situations on an individual basis” the CBC article quoted. “Most parents — when it comes to health and safety issues and crisis issues — those families are all getting the respite they need,” he said.
Is this true, though? And what do we mean by ‘community living’ in the context of a young person with medically complex conditions who require 24/7 care?
Support policy is confusing. Do parents like the Pekruls want Respite or do they want Care? Or do they need both? For many (mostly women) who’ve spent years providing complex care, it is not “respite” that is the main issue (although respite is also clearly fraught in provincial public policy) but rather care programs that are tailored to meet the specific care needs of children and age of majority “children” who need it.
There is no generic medically complex and/or technology dependent child. Its an additional fact that needs attending to.
The matter of respite vs care needs to be closely examined in provincial public policy. For example, what is the enhanced “respite” that is offered to (primarily) mothers in Ontario, for example? It is oftentimes ICU level nursing care. Is that what respite means? Can it mean that however if it also means the kind of relief that was provided under the old Special Services at Home Program that I was thankfully able to access in the 1990’s?
We need to untangle the respite-care knot. We have needed to do so since this new form of childhood – namely childhoods that are being lived with medical complexity and technology dependence – came into being.
Mothers want to mother, and we need health care workers to provide the health care. We feel that our children have a right to that. As do we. For that to take place mothers with severely disabled children in their care need status recognition regarding what it is that we do and what it is that needs to be done by others.
And we badly need to be heard on this point.