A few years ago I was summoned by our night nurse. Matthew had been ill and at the time we were managing pain with narcotics. He was pretty unstable. Like I often did, I hit the ground running when the nurse called and didn’t think about what I was wearing, or not wearing, until well after the fact. That night I ended up having a lengthy conversation with a male nurse wearing little more than a baby doll nightgown. Obviously at the time I wasn’t that concerned, but later I was mortified. I now have an impressive collection of some of the most modest nightwear known to humankind (see above). I now know that LL Bean, in particular, makes amazing granny nightgowns. Sometimes I shake my head at the expertise I have developed on this caregiving journey.
We are one of those fortunate families that has almost round-the-clock care for Matthew, including overnight care. This is, of course, is a very good thing and I am forever grateful for caregivers who have become integral members of our family and seamlessly weave in and out of our household. In many cases we have grown to adore these caregivers and consider them valued members of our extended family. We have been to many weddings and baby showers of former caregivers. We have become honorary aunties, uncles, and cousins to new family members. Such community is a gift and a privilege.
Sometimes we have been able to hand-pick our caregivers and as a result we can choose people who step easily into our family. But sometimes our caregivers are arbitrarily assigned, which means I sometimes have people who are very different from us become members of our household, and in a way, our family. This can be a tricky dance, particularly when I end up working (and essentially living) with people whose ideas, values, and opinions greatly contradict my own and the ones I want to embed in my children. As a rule I value diversity and enjoy lively conversation with people whose opinions may veer from my own. But home is also a place to let one’s hair down and be your authentic self and express your innermost thoughts. It can be challenging when you feel you have lost that privilege. Our private spaces, at times, have had to grow to include people whose ideas and values may radically differ from our own – for example we sometimes find ourselves “living” with someone who may think Donald Trump is the new saviour.
Having ever-present staff in your home also changes the dynamics of the household in ways that is hard to describe. It can be quite stressful. It is difficult to convey what it is like to live knowing that your private space is also a very public workspace. For us WSIB rules apply to our house. We have gowns, and masks, and universal precautions, and lifting restrictions. These rules protect workers but not family members which can be frustrating. We have charts and audits and professionals streaming through our front door constantly. Our home and our lives are an open book and details of our lives in all forms may be documented in nursing notes for later review by administrators and/or auditors. For me, unless I leave our home I feel both both accountable and available to staff. This is our normal. Privacy is usually something I have to leave my home to find.
For families like us privacy is a very rare commodity and 24-hour care has changed how we live and function. My husband and I have to practically schedule an argument so we can have it in private. The same can apply to romance. Years ago we finally mandated “date night” where we went out to dinner or coffee. It often wasn’t anything fancy or exciting. Sometimes we just walked to a local coffee shop. What it was was an opportunity to have a conversation without the possibility of staff walking in on our chat. When my kids were younger I felt uncomfortable about disciplining them in front of staff. I had to figure out how I was going to manage, and be comfortable with, parenting with an audience. For the longest time I felt the need to clean the house before staff arrived. Thankfully I eventually got over that one. Our family stopped saying grace before meals because open religious practices made some staff uncomfortable. I also sometimes work with nurses who even want to have a full blown conversation before I have had coffee in the morning. Imagine living in a cross between a group home and a hospital and you have something that closely resembles our household.