Home isn’t a comforting place anymore. Last year, my brother Peter spent 6 months hospitalized at St. Gavin’s Hospital. Now that he has been discharged, he requires 24 hour nursing care at home. At first it was a little scary having so many people in the house but by the time school began, I knew them all and was becoming more comfortable.
In October, we found holes in the schedule. Uncovered shifts in the care Peter and everyone in my family relied on. My mom stayed up all night in his room and my dad canceled business trips, jeopardizing his career. When there were unfilled shifts, it was traumatizing for everyone. My mom was fighting hard to punish the agency for leaving us in this mess, my dad was just downright grumpy, Peter was turning blue and I… I knew there was nothing I could do, this was our new reality.
The agency was tired of my mom’s frustration and sent more nurses, maybe every nurse in Toronto (including, Mike who was very upset to share a name with me). It was difficult to get to know the nurses and be comfortable around them. I lock the doors to any room I am occupying to have at least a little bit of privacy. I am very terrified that the strangers will see that I have a diary. Boys aren’t supposed to have a diary!
When my daughter, Jamie, was in Grade 2, she began writing stories. After a while, they evolved into longer narratives, divided into chapters. The loot bag for her birthday party in Grade 3 was a ten page spiral-bound book authored by Jamie and illustrated by her twin sister, Sierra.
At 11 years old, Jamie writes in a voice that belies her years, the richness of her descriptions are detailed and insightful. Depending on the topic, she will write from a character’s point of view. She wrote the opening paragraph of this article from the perspective of a male adolescent.
All their lives, my daughters knew that their big brother needed more help than most kids. Feeding tubes, syringes, medications and pill crushers were familiar items to them. When they were in first grade Jamie gave her classmates an impromptu genetics lesson to explain how Jacob inherited the gene that caused Pelizaeus-Merzbacher disease (PMD).
But they were ill-prepared for the dramatic and sudden decline in their brother’s health. One daughter was terrified of entering the doors of the hospital, scared of what she might witness. The other found comfort in Jake’s hospital room, spending hours cuddling with him in his bed as the hum of the breathing machine helped inflate Jacob’s lungs. And both girls eventually got over their fear of the suction machine, holding Jacob’s hand and singing to him when his oxygen levels plummeted.
After 236 days of being an in-patient, Jake’s sisters were looking forward to having their big brother home. We were comforted with the promise of 24/7 nursing care, skilled nurses helping us manage Jacob’s fragile medical state in the comfort of our home.
None of us were prepared for the circus that followed, a comedy of errors that was anything but funny.
There have been so many nurses that Jamie and Sierra created a board listing the nurses ahead of time so they would know who is in our house at any given time. Although this sounded like a viable plan, it failed because we often didn’t know who would be coming for a shift until shortly before the shift was to begin…if the shift was even filled at all!
We were repeatedly told that the agency needed time to fill the schedule and they expected to have a stable list of competent nurses a few weeks post-discharge. That was August. Six months ago.
There are now five agencies contracted to provide what should be 5-6 nurses but we are still not fully staffed. Two agencies have not been able to send a single nurse despite their claims of being able to meet Jacob’s needs.
The past half-year has been hard on all of us, each affected in different ways. I can only begin to imagine how uncomfortable and awkward it must be for Jacob to have so many strange caregivers, some with questionable skills, performing intimate tasks including bathing and suctioning. I have yelled at the nursing agencies on numerous occasions, reminding them that my son is a person who is more than simply a shift to be filled. I ask them to think about how they would feel if a new person showed up every few days to spend many hours with them, each one unaware of how best to communicate with them.
I know how hard Andrew and I have been struggling. Jacob’s nursing care needs are always on my mind, they even haunt me in my dreams, when I’m able to actually fall asleep.
But Sierra and Jamie are also suffering. They don’t feel at ease at home, the one place where they should always be able to relax. One of my daughters refuses to keep the door to her bedroom open, as she doesn’t want any of the strangers to look inside. And at bedtime, when we discuss our “roses and thorns”, the good and the bad parts of our day, she knows that Jacob’s nursing issues are always my thorns. Both girls notice when a nurse treats Jacob as a small child, putting toddler cartoons on his iPad for him to watch. And this makes them angry. They say things like “Don’t they realize he’s 13? Why is he watching Magic School Bus?” And this breaks my heart.
Listening to my daughters say that they don’t feel comfortable at home when a nurse is with Jake in the next room, is not right. Watching them seethe when a nurse talks to their brother like a young child makes me mad. And when they ask why a nurse was allowed to come back after falling asleep on the job makes me feel like I’m not doing enough for my son. And they are right – why is there no accountability in a profession that has professional guidelines?
So when I read Jamie’s story about Mike, the boy whose brother needs around-the-clock care, I wish I could comment on my daughter’s vivid imagination. But I can’t. My talented daughter has used her skills to illustrate the reality of our life. I can only hope that someday soon she will write a follow-up piece: a story where Mike explains how comforting home has become.