powered by:
uhn foundation
day in the life of a caregiver: becoming a medical expert and 'stepping in the mud as you go'
7 minute read
everett, 10 (left) has complex medical needs that his mom, michelle (right), has learned to master to become his voice of advocacy and belonging.
supplied
stay up to date on this topic
michelle sanders wakes up at night if her son everett wakes up, which is less often than it used to be when he was little, but it still happens. now he’s 10 and getting physically bigger, so she and her husband, tyler, are looking at home renovations that will make room for his larger wheelchair.
so, before her day begins, michelle has to function on fewer hours of sleep than she’d like to get.
“his injury kind of affects his body’s ability to regulate. so it wouldn’t be uncommon for him to be up at like midnight for the day. so he’s maybe packed maybe two or three hours of sleep and then he’s up. and then when he’s up, a caregiver needs to be up as well,” she explains of her role as primary caregiver. everette had a brain injury at birth that caused his medical complexity: cerebral palsy, epilepsy, autism and bilateral hearing loss. he’s also a non-speaker, which is not a diagnosis, but more of a description.
“if he’s not in his chair and he wants to be mobile, he uses a full support walker,” michelle adds, describing his mobility. michelle, 36, lives in st catharines, ont., with her husband, son and neurotypical daughter, who is four.
having a child with complex needs
the journey of having her first child didn’t happen as she—or anyone—had expected.
advertisement
“his delivery was challenging and it ended up being an emergency delivery because his heart rate was tanking in utero, which is why we knew something was wrong. and i lost a lot of blood and i had a fairly significant injury as a result of the delivery. and by the time he was delivered, he didn’t have a heartbeat anymore. he was stillborn.” michelle does her best to recall the events, even though she was fuzzy from weakness at the time and doesn’t know exactly what happened.
her son had an apgar score of 0 for the first 10 minutes which means lack of vital signs and the need for immediate resuscitation. the first 72 hours in the neonatal intensive care unit were critical with his organs shutting down. michelle and tyler were told that either he turns around in 72 hours or he doesn’t. he did, but he also contracted a blood infection from his central life support line, reeling him back into a life-and-death situation. but he came through.
“it was very significant, as you can imagine, in terms of grieving. and just not knowing what to expect or what was going to happen or what the future looked like. we knew that it was going to look different than what we had planned for,” she says.
one of the first hurdles was his feeding through a gastronomy tube (g-tube) that was surgically implanted in his stomach because he had trouble swallowing. all fluids, medication and food are delivered by g-tube. “coming home from the hospital, a large part of our caregiving has been that learning curve of going home with medical equipment. we do not have medical backgrounds. and there was no doll to practice on. i remember asking for one. i’m like, if [the g-tube] falls out, you have to put it back in. you want me to put it back in the tummy?”
advertisement
like any new mom, she felt overwhelmed with a tiny human depending on her and the added complexities of medical equipment and procedures. and although he had the g-tube, he would sometimes choke on his own secretions. michelle recalls one night when she and her husband saw it happen on their video monitor and ran to his room.
“we were tipping him upside down, but he was turning blue. he couldn’t clear it. it’s not like he ate a crayon so there’s nothing to grab. so we were doing that and he did clear it, but in that moment, i’m like, i don’t know what more i can do.”
demands of navigating care costs and supports
the event set her on a determined quest to find someone in the health-care system who could tell her why it happened and what physical supports she could have at home in case it recurred. she was referred to a respirologist, but the process took weeks to meet and then finally to get a suction machine for home that’s beside his bed. when he needs help, she has the equipment to help.
“but the path through that, knowing who to talk to, finding that out, talking to that person, then navigating the supports of how do i get that equipment funded so i can have it in home is another piece. and then you have to be trained on it. it’s medical equipment that you see in every hospital room—a suction machine attached to the wall.”
advertisement
puzzling through system navigation has been, to say the least, filled with “massive learning curves,” she says, and setbacks as new governments make quiet policy changes that reduce funding for personal care and equipment her family relies upon.
a 2023 national survey by petro-canada caremakers foundation and leger revealed that nearly half of unpaid family caregivers under 55 spend more on monthly care-related costs than groceries, childcare and phone and internet bills. estimates suggest there are more than eight million unpaid caregivers in canada.
as well, a 2022 report by the canadian centre for caregiving excellence found that canadian caregivers spent an estimated 5.7 billion hours each year caring for others, with an estimated loss of productivity of $1.3 billion per year or the equivalent of 557,698 full-time employees. despite being an integral part of the health-care system, support and resources for these key individuals are lacking. the centre has launched a national caregiving strategy that outlines policy solutions for improvements.
caregiving is managing uncertainties at every turn
for michelle, talking about a typical day in her life as a caregiver isn’t what you might expect. while everett goes to school in grade 4 with a support person by his side for care and feeding, there’s so much that michelle does behind the scenes to keep everything on track. her role also tackles the near-impossible task of anticipating what might come next in terms of his needs or costs or even surprises at school.
advertisement
at one point, when the support person wasn’t available as planned, michelle had to take her son out of his school to feed him his lunch. she wasn’t allowed to do it on the premises. why? school policy that she had to advocate to change. she’s a tireless advocate out of compassion and necessity, and a member of the canadian caregivers advisory network.
“it took me about two years of system advocacy and navigation. i ended up going to the ministry of education to ask them about some of the policies and now we are able to sign a memorandum of understanding and get a police check, and now we can feed him in his classroom, but that took me two years to achieve that.”
she takes most of her son’s health-care appointments while he is at school, the ones where they don’t need his physical body. he spent so much time in therapy offices, medical offices and hospitals in his life that the family has prioritized trying to give him a childhood outside of all of that.
michelle says that her caregiving day “speaks to the volume and the magnitude of what system navigation means. it so much exceeds the obvious booking appointments, going to medical appointments, administering medications. i think those are some of the obvious things, but there’s so many small micro things that are invisible. one of them is that uphill learning curve of some of the downloading and medical responsibility on caregivers. and how much time and energy and troubleshooting and stepping in the mud as you go just to learn the best way forward. there’s no clear path.”
advertisement
she also points out that kids with a brain injury are growing and maturing while living that injury, which means that no one really knows the trajectory or “what’s going to come right in front of you on your path at any point.”
everyone’s brain is different and complex.
putting personal goals on the backburner
michelle didn’t return to work after her son was born, taking on the role of primary caregiver. she’s studying online part-time for her master of social work degree, sparked by her drive to make life better for others. her role as caregiver for her son, she writes on linkedin, “has brought me into close relationship with the realities of exclusion and the everyday courage it takes to live fully in the face of barriers.”
what are her plans for down the road? “people keep asking me, ‘what do you want to do with your degree?’ i have lots of ideas, but i don’t plan. because i can’t. i don’t want to. i don’t want to be disappointed when the things that i’m relying on today to do those things outside of the home are taken away.” she may not be able to afford support for her son’s care to allow her to be more involved in the community for employment, volunteering or even socializing.
her life as a caregiver is uncertain, challenging and, on the other side of things, transformative in many ways. “i think i have a stronger appreciation for the here and now and also a re-understanding of what human value is,” she says, pausing to find the right words.
advertisement
“we live in a society that very much weighs human value and measures it based on capacity and productivity, where my experiences in caregiving across my lifetime have taught me that human value is based on being and not production. you see that in the way that the systems are designed. the ones that you rely on are designed based on values that are different than ours,” she explains of her family and loved ones.
“and productivity was never meant to measure human souls.”
share story
