In thinking about a post on the mundane of my life, I tried to decide what part of my daily caregiving life drove me the craziest. Is it dealing with the diapers of a 17 year-old teenager? Is it the fact that I need to book respite if I want to get away overnight? Is it the chronic presence of staff, lovely as they are, in my home? Is it the fact that the larger world is often inaccessible? Is it the feeding tube alarm that sounds exactly like the beeper on my dryer?
What drives me the craziest is the schedule itself. I am aware that many busy people are accountable to a very demanding schedule. But, with extreme caregiving that schedule can take on new significance. Every 24 hour day is a busy rotation of staff, care routines, medications, programming, and activities – weekday or weekend. My son’s care includes the careful administration of several medications necessary to control fairly serious stuff – like seizures and breathing. And then there is the feeding pump that needs to be continuously monitored. My son needs time in his wheelchair, and then time out of his wheelchair to prevent pressure sores. The duration of time in his chair needs to be monitored. These days, he weighs 120lbs of floppy weight so transferring is labour intensive. I really miss the days that I could just toss him in his wheelchair and go.
My day is organized around a steady schedule of complex care. If I am not the one providing the care I am responsible for managing the staff who step in and take over. My son’s care is 24 hour, meaning we are still “on duty” even through the night. And that is assuming all is well. Life pretty much falls apart when he is ill, or unstable.
What drives me crazy is that I have very little ability to control or manage my son’s care schedule; I am completely controlled by it.
Even a minor change his schedule can wreak havoc on his health. Missing a medication, forgetting to turn the feeding pump on or off at the right time, forgetting to give him water or prune juice at certain times, an outing that takes too long, leaving him in his wheelchair too long, staff who cancel at the last minute – all of these can have serious consequences. For example, forgetting prune juice or GI meds not only makes the poor kid constipated, but could spiral to a bowel obstruction concluding with a hospital trip. The knowledge that even a minor mistake, like missing a seizure med, can have disastrous consequences takes its toll on exhausted and sleep-deprived caregivers. It certainly takes its toll on me, at times.
The schedule governs every second of my day, and night. It is unrelenting and does not take a break for anything. The care schedule controls my thinking and planning. Morning routines, dinner times, exercise, volunteer activities, blogging, social outings, holidays, phone calls, sleeping, eating, showering, all of of these activities are governed by Matthew’s schedule. I cannot blithely modify the schedule. Relief from the schedule requires a respite admission. All of my life, and my family’s life to a certain extent, must play second fiddle to my son’s care schedule in order to ensure his health and safety – which of course is one of my greatest responsibilities.
Speaking of which. Blogging time is up. Gotta go.