Privacy and life with 24 hour care.



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.








Garbage Day



Monday is garbage day in my part of the world and what could be more mundane than garbage.  The extraordinary waste produced by extreme caregiving is rarely discussed, but as municipalities start placing stringent limits on waste disposal it is something that the general public needs to be more aware of.

My kid produces a LOT of garbage.  Our region has yet to charge for garbage bags and garbage removal so we have been able to get away with putting more garbage at the curb than the average suburban family.  Those days will be ending soon and I am not entirely sure how families like ours will be accommodated.  Families with young children will have a time-limited allowance for increased garbage during the “diaper years”.  But, what if those diaper years never end?  Or, what if you are providing end-of-life, or eldercare at home?

During my early mothering years I attempted to be environmentally friendly.  I used cloth diapers and tried to make sure my environmental footprint wasn’t ridiculously large.  But these days I am beginning to think that we might need to name a landfill after my son. During an average week my 17 year old son produces at least one full garbage bag of of diapers – adult medium sized at that. The days of cute little diapers with bunnies are well behind us.

Matthew goes through about 55-60 diapers a week.  Every week.  And will continue to do so indefinitely. That’s a lot of diapers.  He also uses a range of incontinent products like adult sized wipes.  Baby wipes just don’t cut it these days.  Throw in the fact that, weekly, we also dispose of syringes of various sizes, bags for his feeding tube, tube extensions, medicine cups, oral swabs, gauze and other assorted and sundry medical supplies (all of which are individually wrapped) and Matthew alone produces a lot of garbage.  Garbage that we cannot avoid producing by reducing, reusing, and recycling.  Many of these supplies have been contaminated with body fluids so for safety reason we cannot just toss them in the recycling bins.  Similarly, for safety reasons, we cannot re-use many of Matthew’s medical supplies for any length of time.  We do re-use syringes and feed bags for several days to try to minimize garbage.

But, in the end, lots of stuff ends up at the curb, and in a landfill, because, in essence, our home is a mini-hospital that generates a lot of biohazardous waste.

As someone interested in environmental issues I am all for reducing waste wherever possible.  But there are some situations where reducing waste is very difficult, even impossible.  Will families raising exceptional children with the exceptional garbage that goes with that task have to bear yet an additional cost – the cost of increased garbage disposal.  In many cases exceptional families are already coping with a reduced income and increased costs.   Ideally cities will provide some form of compassionate exemption for families in situations like ours.

Something to think about during municipal discussions and voting.

Morning madness


One of my goals for this blog is to invite people into our home and daily life and allow readers a glimpse into the daily nitty gritty of caregiving. In Care and Equality: Inventing a New Family Politics Mona Harrington reminds us that care is largely performed by women at home, and as a result is largely invisible and taken for granted. Until the broader community develops a more comprehensive understanding of the demands of caring it will be difficult to develop appropriate policies and funding for extreme caregivers.

A comprehensive review of the research provides a fairly clear, and fairly bleak, account of caregiving in families. While there are a handful of families where dads are the primary caregivers, for most families with complicated kids the mother does most caregiving. The more severe the child’s disabilities the more likely it is that the mother has had to leave work, which can correspond to financial challenges. These mothers, as a result, become increasingly isolated, emotionally and physically exhausted, and risk physical injury. Depression, anxiety, PTSD, back and shoulder injuries, and so on, are very real risks for these women.

Unfortunately most people don’t read research published by Statistics Canada. I am a bit weird that way. Usually the more readily available stories of caregiving often present the daily demands of care in an idealistic manner, with Ian Brown’s The Boy in the Moon being a notable exception. For example Henri Nouwan in the popular and influential book Adam: God’s Beloved describes his morning care routine with Adam, once mastered, as a contemplative, intimate, and even prayerful interlude in his daily life. Stories of caregiving such as Nouwen’s can be problematic because they are usually the stories of  caregiving that are available to the general public.  Stories of demanding, unyielding care without a happy outcome don’t sell books.  Unfortunately these idealistic accounts of caregiving can obscure the more challenging daily reality for most caregivers. As an extreme caregiver who usually spends most mornings in a wild blur of care I can only wish that our morning care routine were peaceful and contemplative.  It isn’t.  Most days I would give my right arm just to be able to drink my coffee while it is still hot.

I am not a fan of the morning care routine, which is ironic because I am an early bird. I am usually at my best and most productive in the morning. But mornings with Matthew are often a mad dash through a dizzying array of caregiving responsibilities that have only become more complicated and physically demanding as Matthew has grown older. By 10am I often feel a need for a nap.  Despite the fact that I can perform most of Matthew’s care on autopilot the morning routine has still not become contemplative and peaceful.

I originally thought that I might provide a detailed account of Matthew’s morning care so that readers could get an accurate view of what morning care is really like. Spoiler alert – it is NOT a peaceful interlude in a busy day. But I quickly realized that such a post would be incredibly boring. So I will give you just a snapshot.

The main task of Matthew’s morning is to hook him up to his feeding pump and start his daily infusion of high-calorie formula. Matthew cannot eat, so he has a feeding tube surgically implanted into his stomach. This tube is connected to a pump that hangs either off his wheelchair, or an IV pole. Matthew is connected to this pump receiving “food” until about 9pm at night. Then at 11pm the pump is started once again to infuse water over night to ensure adequate hydration. In other words, he is hooked to the thing all the time. Before I start his pump in the morning I need to give him meds via his g-tube (see above) and also via inhalation.  Throughout the day, about every two hours, he receives a water flush to ensure he remains hydrated. If we don’t give him water regularly the risk of dehydration with lots of unpleasant consequences is very real. Ask me how I know. Obviously managing this pump and his feeding and hydration schedule takes some time. Errors in his care could range from slightly annoying to downright dangerous for his health. So let’s add a heavy dose of guilt and anxious responsibility to complete this part of the picture.

Matthew, of course, needs to be dressed and transferred to his wheelchair. This involves using a ceiling track sling since lifting him unaided is now dangerous for both of us. He is 17 after all. Dressing him is no small feat either. Ask a friend to lie on a bed and NOT COOPERATE. In fact, they probably should be wiggling – maybe even bonk you on the head to get a real sense of the task. Then remove all their clothing and dress them in a new outfit including socks and shoes. Trust me, you will feel like you’ve been to the gym after you’ve done this. For bonus points, wash their face while they push the washcloth away, brush their teeth while they bite the toothbrush, and apply deodorant while they giggle in an unrestrained fashion.

And remember this is just the first hour of Matthew’s day.  Things have only just started! Oh, and you get to do it all over again tomorrow.  And the day after that.  And the day after that.  And the day after that.  And the day after that………………………..