Caring for really complicated kids usually requires hired caregiving assistance. Most of us extreme caregivers figure out pretty quickly that if we want to sleep, grocery shop, or make sure our kids get to the dentist, we will need to have hired caregivers in our home.
Over the years we have had a regular parade of paid caregivers through our home. For the first ten years of Matthew’s life we survived with pretty limited supports. But after the age of ten, when Matthew became very medically complicated, the team of paid staff in our home increased significantly. For our family paid staff in the home is totally normal. My two able-bodied children are so used to paid caregivers and nurses in our home that to them a household that resembles a group home is commonplace. Bumping into a nurse in your pyjamas while getting a 3am class of water is routine.
For the most part the staff in our have been/are wonderful and become treasured members of the family. We have been very, very lucky. For families like mine it is not an exaggeration to say that paid caregivers in the home are what allow us to function. Because of paid caregivers I now sleep 8 hours at night. I am able to return to school and pursue my dream of a PhD. Paid caregivers free up my time and allow me to take my two typically developing children to activities. Paid caregivers ensure that I have attended my eldest son’s sporting activities and my youngest son’s dramatic endeavours. Without paid staff I would be essentially tied to Matthew’s bedside and/or wheelchair. Matthew’s health and necessary care would dictate when or how I could engage in anything – from special occasions, to necessary errands, to something as simple as taking a shower. The overall functioning of our household, and my personal quality of life, depends significantly on the availability of paid staff.
But there can be a downside to all of this that can quickly enter the list of One More Thing. Staff are wonderful when they are available. But staff quite legitimately get sick and need holiday time. Those things tend not to ruffle my feathers. I care about our staff and want them well and rested. But the situation can become more complicated. Home care shift nursing is often less desirable than other forms of nursing. Hospital nursing tends to better utilize nursing skills, offer better shifts, and provide better pay and benefits. As a result sometimes we have had huge gaps in our nursing schedule simply because our home care nursing agency can’t hire enough nurses. Matthew once missed a month of school because nursing was unavailable. When nurses don’t show up, or are unavailable, I am the nurse regardless of what I might have had planned.
And while most of our caregivers are walking saints who single-handedly improve Matthew (and my) quality of life, we have had some negative experiences that I find brutally stressful. I have had nurses comment on everything from how I dress my son to the quality of my homemaking skills and snow shovelling efforts. For the record my homemaking skills probably suck – but I don’t need to be reminded of that! I once learned a nurse left Matthew in bed all day while s/he cruised Facebook and played video games (we were out). I once learned that Matthew was being transferred in such a way that I was amazed his shoulders weren’t dislocated. I have had staff decide they were going to get Matthew eating rather than use his feeding time – something that is downright medically risky. My commitment to Matthew demands that I deal with these more egregious issues – something I find brutally stressful. A huge One More Thing when these things happen.
We have had nurses refuse to work unless we crated our dog for the entire 12-hour shift. Disagreements with one’s spouse, or difficult moments with your kids – there is always an audience. There is a sense that you are always being watched and perhaps even evaluated as a parent, wife, or person.
Dealing with these situations can be stressful. I have had no training as a human resources manager, yet I often function as one. When I hire privately, outside of an agency, I am responsible for soliciting resumes, interviews, reference checks, and so on. I am responsible for organizing paycheques and staff rotations. In some cases our family also manages employment insurance issues, taxes, and workplace safety. Again, One More Thing. Well, lots of One More Things!
And then there is the emotional toll. When staff are in your home there is a sense that you always need to be “on”. You always need to be decently dressed, presentable, polite, and hospitable. There is no room for down or bad days because you always have an audience. You always need to engage in polite conversation even when your inner introvert is screaming you need a break. Your home no longer resembles your retreat from the world and its pressures, but rather becomes a workplace teeming with people and responsibilities. One More Thing.
But the opposite side of the coin is no staff. And then my life would be unsustainable. Forget my personal dream of a doctorate. I wouldn’t have the time and energy to manage my personal care or to engage adequately in the lives of my children much less read Heidegger. My marriage would suffer. Date nights, even walking the dog would go out the window. Staff are a gift, but a gift with a cost. And at times their presence is One More Thing.