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………………………..