Nine years ago our caregiver, Carol, joined our family. When we hired Carol we had reached a point in our parenting of Matthew that I could no longer sustain his care independently. We had some weekly support from homecare services but that support was limited. To complicate matters Matthew needed significant medical care during the night so I was chronically sleep deprived. We eventually switched to full-time night nursing to allow me to cope but this meant that all our homecare hours were consumed by this night care. We reportedly maxed out the government allotment for homecare services. And yet even with maximal support I was still only hanging on by my finger nails. Indeed some months we would run short of nursing hours so we had a standing arrangement with a local children’s respite home that Matthew would go there for a few days each month to bridge the gap in funded care. Thankfully it was understood that I could simply not provide 24-hour continuous care. Those years are a blur and nothing could compel me to re-live them.
At this point in our journey there were no homecare hours left for daytime care. That meant that appointments, grocery trips, outings, extracurriculars for our other boys, all of it, became a logistical dance. While I was loathe to admit it, Matthew’s care had progressed to a point that one caregiver, even a fully dedicated one, could no longer handle it solo. If we were to keep Matthew living at home amid a healthy family unit we needed help.
Enter Carol. She was, and is, a saint who saved my life. Carol quickly mastered the nuances of Matthew’s care. But more than that she was (is) devoted to him. She took him on walks. Read stories endlessly. She baked cookies with Matthew -cookies my growing teens, Robert and David, inhaled. Her care allowed me to finally have time for myself. I could catch up on my sleep and spend time with my other boys. I even went on dates with my husband from time to time. Eventually I went back to school to try to pursue a long dreamed-of graduate degree. There aren’t enough words in the English language to express my gratitude for Carol’s support.
But there is something about this story that is important to note when discussing extreme caregiving. It’s a part of the story we usually don’t talk about. We hired Carol with funds from our family budget. Funding a full-time caregiver is not an insignificant cost and we were lucky we could afford to do so. The government did not provide the sort of support we would need to allow our family to thrive. Indeed we received just enough to support to avoid catastrophe. Equally important to the conversation was that we hired Carol after I had left the work force and before Matthew won a malpractice award (that now funds his care). Most families simply cannot absorb the double-whammy of a loss of a family income while also funding full-time skilled care. We were just unbelievably fortunate that my husband has an excellent, well-paid job with generous medical benefits.
Ask any extreme caregiver and they will likely tell you that they are stretched to the extreme with little meaningful assistance from government homecare supports. It isn’t that there aren’t supports. They exist. It is only that for extreme caregivers the offered support is usually a drop in the proverbial bucket. Throw in the relative absence of adequate long-term housing options for both paediatric and adult populations and you have a troubling scenario involving maxed out caregivers with few options. Things like quality of life go out the window and are often replaced by a goal of sheer survival. It is no way to live. Indeed I would argue it isn’t really living, it is often barely surviving. And one needs to remember that for a family with a young, complex child there is seemingly no foreseeable end to the surviving.
We can’t talk about extreme caregiving without noting that raising a kid like Matthew is expensive. Yes, primary care is funded in Canada. Thank goodness. I cannot imagine raising Matthew south of the border. But even with funded primary care the costs are massive. Until recently paediatric medications weren’t covered. We had years where Matthew’s pharmaceutical costs exceeded $40,000. Throw in the recurring costs of incontinence supplies, feeding tube supplies, syringes, and so on, as well as sporadic costs such as personal care equipment, transfer equipment, and home modifications, and the costs of caring for a child like my son are staggering. Statistically most families with a profoundly disabled child have one parent leave the work force so these costs are subsequently shouldered by one income.
In Ontario income thresholds to qualify for supports are fairly low. Many middle-income families are excluded. Funding for some equipment and drug costs is available but the administration effort to secure such funds is onerous. There are reams of forms to complete and professional signatures to obtain – at times for only a fraction of the cost of an item, and only after the family has funded the item out of pocket. The strain placed upon an already overextended parent – emotionally, physically, financially – can be overwhelming. Even when your child has a permanent disability forms often need to be re-completed every few years. For ongoing expenses such as diapers or feeding tube supplies parents are required to keep every receipt to demonstrate that the funds are used for approved costs. There is a sense of distrust – that parents might use the money elsewhere – and audits happen randomly. I can remember once being audited for incontinence costs. The annual amount provided by the Ministry was $750 -nothing close to the true cost of Matthew’s diapers/wipes/creams/enemas. But yet I had to provide an accounting of every penny spent on incontinence products that calendar year even though the cost easily exceeded the provided funds.
The upshot of all of this is that I am lucky. I am lucky that my husband’s income has meant that we have never had to worry about paying the mortgage and buying groceries. I have never had to struggle with whether I could afford to purchase my son’s medications. I have never had to watch debt mount simply to ensure that my son’s basic costs were covered. And not only could we afford all the necessary supplies for Matthew, but we could also afford to hire an angel in disguise so that our family could not only survive those peak caregivers years, but could thrive.
For extreme caregiving families to survive, much less thrive, the need for increased funding and support is real.