Over the last couple of days Global News has featured families with complex children who require significant levels of nursing to cope. Despite a commitment from home-care and the government to support home care initiatives these families report that it is an ongoing struggle to secure consistent, reliable, and adequately trained staff to care for their complex child.
Most families like mine , and the ones in the above video clip, rely on extensive home care services to cope. For those of us caring for medically fragile children with significant disabilities, adequate in-home care is often what is needed for us to engage in basic self care such as eating, sleeping, and showering. Nursing shifts are rarely used for anything as decadent as a night out at the movies, or a date with one’s partner. Without nursing in the home we cannot survive and our children would require support in costly long-term care facilities.
In the video, Ms. Oula Alaoui’s final statement is, “if you complain a lot you are a trouble mom”. In my experience Ms. Alaoui hits the nail cleanly on the head.
Society expects a great deal from mothers. Mothers bear the burden of many unhelpful stereotypes that valorize self-sacrifice and martyrdom. The truth is that in extreme mothering such as the kind mothers of complex children are required to perform motherhood crosses a line from simply caring to meeting a societal need. The world needs us mothers to be sacrificial and uniquely capable because it needs the care we provide our family members. The unpaid nursing care extreme mothers provide saves the Ontario tax payer untold sums of money. As Ian Brown pointed out in The Boy in the Moon, to begin to replace a caregiving parent would require the equivalent of 2-3 full-time paid caregivers.
Mothers are not only expected to be sacrificial, but they are expected to bear this burden of care with grace and accepting silence. To complain that you need help, or that the help provided is not adequate for your child, offends the perceived natural order and shreds the societal stereotype of the “good”, sacrificial mother. Good mothers care at all costs, even to their own detriment. So if a mother upsets the myth of the “good mother” and complains they must be “trouble” – ungrateful, difficult, arrogant, bossy – you name it, we’ve probably been called it.
About a year ago there was a serious safety error made while my son was not in my care. The issue was sufficiently egregious that the overarching agency reported the involved professional to both their union and their regulatory college without my prompting. But yet during a meeting with the agency to discuss what happened and explore strategies to ensure it didn’t happen again I was told I was an aggressive parent for raising the concern. The agency clearly communicated that my involvement in the matter was both unwelcome and unhelpful – that it should be enough that they admitted they made a mistake. The meeting became stressful, and normally stoic and fierce, I was reduced to tears. Painting me as a difficult mom was a convenient “out” for an agency that had been clearly caught in the wrong. As a “good mother” my role was clear – to accept the care offered to my child and be grateful the agency “took my son off my hands” even when that care seriously jeopardized his health and safety. I became “a trouble mom” simply because I had the audacity to expect an agency to ensure my child’s safety and to share with me how that would be achieved.
The unfortunate thing, though, is that community care can be a roll of the dice. I am the first to admit that most of the nurses in my home are wonderful and challenges like the above have been rare. I have been incredibly blessed and lucky. In our home staff are beloved members of the family and their care allows both my son, and me, a quality of life that would be impossible without their dedicated care. But some families don’t have this experience.
As a parent who also works with other parents in the community I have heard many stories of paid caregivers who are either unprofessional, or are simply unable to handle the complexity of care a child demands. To be fair, the latter are unfairly thrown into community situations to the frustration of both professional and parent. But in the case of unprofessional and substandard care parents are stuck between a rock and hard place. In community care there is much less accountability than one finds in larger institutions such as group homes and hospitals. In problem situations it is often a parent’s word against a professional’s word and parents are often easily and unfairly labeled as “trouble” since it allows an agency to blithely ignore real concerns. Further, parents are told both implicitly and explicitly that if they are perceived as difficult then their shifts won’t be filled forcing them to choose between substandard care and sleep. In other words, don’t be difficult or you will pay. It is not as if parents are releasing their inner “Fang”, they are simply asking for appropriate care.
Long ago I decided that when it comes to advocating for my son I am okay with being called “difficult”. If “difficult” is what it takes to keep my son safe and healthy then so be it. As more and more mothers decide for themselves that being a “good mother” is about effective advocacy rather than martyrdom I imagine you will hear more and more of our voices.