This morning the nurse that was booked to do Matthew’s morning care did not show up for their shift. It turned out that there was a good reason he could not work, it just wasn’t communicated to me.
As a doctoral student I work from home. Doctoral work is a fairly solitary endeavour involving long hours with one’s fanny planted in front of one’s computer. Without a strong sense of discipline and an organized schedule it is very easy NOT to work. Working at home it also very easy to become distracted by the ubiquitous long list of “to-do’s”. As a rule I treat my doctoral work as a job. Most days I endeavour to be at my desk by about 8:30am and work consistently until about 3pm. My best work tends to happen in the morning and early afternoon so I strive to set aside those hours for work. I have learned the hard way that the quality of my work deteriorates precipitously after about 3pm. So at that time I switch to my other jobs – that of mother, caregiver, case manager, and household manager. In the late afternoon I pay bills, grocery shop, review medical inventory, order medications, medical supplies and diapers, cook meals, car pool kids, fold laundry, and do the odd bit of household cleaning largely considered “damage control” – to name a few activities. I almost never work in the evenings because any work done after about 7:30 or 8pm is total crap and has to be undone the next morning.
So when a nurse doesn’t show up for a morning shift it totally throws my day into a tizzy. Morning care and transportation to Matthew’s day program keeps me busy until about 10am. By the time I settle into my work and get my brain turned-on it is usually closer to 10:30. I have just lost the most productive hours of my day.
Sadly, for caregivers, these sorts of scheduling challenges can be the norm. These scheduling glitches are the reason I left the paid workforce many years ago. When your life involves weekly scheduling hiccups employers can get, quite reasonably, cranky. When Matthew’s wheelchair breaks, a nurse fails to show up, he becomes ill, his day program is shut down due to a public health outbreak, he has an appointment, or there is any interruption of any kind to his day-to-day life, he remains at home with me and any plans I might have had are tossed out the window. This happens several times a month. I don’t love the rocky ride, but I have learned to go with the flow.
To be fair though, these scheduling hiccups are annoying because I actually do want to finish this degree before I die. But for other caregivers who have to work to make sure a roof remains over their head or their children eat, unreliable care and the inability to remain employed is a catastrophic fact of life. And for many it is their reality.
And so today as I grumble in my afternoon tea about lost hours of work, I will remind myself that sitting at a computer blogging and reading about caregiving, and not worrying about paying the mortgage, is a privilege many caregivers would envy. As my son would say, “hashtag blessed”.