My father’s sudden spinal cord injury forced my family to navigate the complexities of at-home health care together.
BY JULIA CANDIDO
ART BY CALLIE SILVERTON
Flat on the ground, immobile, confined to his own fears, Reno Candido’s world—and the world of those closest to him—changes in an instant.
On a cold December 27, 2016, my dad drives to his Ford dealership in Brampton, Ontario, to get the oil changed on his grey F-150 pickup. He has the first appointment of the day. Rather than going to the customer service waiting area, he looks at the new Ford models in the lot. He happens to look across the street, and a bright orange Dodge pickup truck at another dealership catches his eye. He begins to walk away from the lot, down the grass embankment, towards the orange Dodge truck. Dad steps on the sidewalk, and his legs give way. He’s slipping on black ice, falling backward onto the grass. When he hits the ground, an electric shock jolts through his body. His arms go limp, and his legs stop moving. He’s frozen. Something serious just happened, he thinks. But what?
Dad yells into the early morning air.
Unable to reach for his phone, nobody ambling nearby, panic sets in.
“Shock begins to set in. He’s fading in and out of consciousness.”
Reminding himself to stay calm, he yells as loud as he can. Finally, on his fourth cry for help, a man stands over him. Dad directs him to the iPhone in his coat pocket. “Call my wife and tell her that I was in an accident and something is seriously wrong,” he says. “Also, call 911 and tell them to send an ambulance over as soon as possible.”
Shock begins to set in. He’s fading in and out of consciousness. After receiving the call, Marianna, my mom, speeds from our Mississauga home. Dad feels increasingly cold from laying on the ground. The ambulance takes more than an hour to arrive. Mom and the good Samaritan stay by dad’s side, trying to keep him warm. Some people from the dealership also bring him a thermal blanket. When paramedics arrive, they strap him to a spinal board and transport him to the William Osler hospital in Brampton where they treat him for hypothermia and shock.
A spinal cord injury (SCI) unveils a world we didn’t know existed. Many decisions and accommodations need to be made to adjust to what we now refer to as “normal life.” This is a scary and uncertain process for my entire family. As we prepare for Dad’s arrival back home, the myriad nuances of successful home health care become a stark reality.
We had no idea how much our lives would change.
In the emergency room at Osler, doctors order an MRI for Dad. They diagnose the injury as a spinal fracture—he snapped his spinal cord. They need to transport him 25 kilometres south to the Trillium hospital in Mississauga, where he can undergo an emergency spinal cord fusion surgery. Mom calls me and my brother Robert. She says we need to go to the Trillium hospital, because Dad has sustained a serious neck injury and needs emergency surgery.
“I also think nobody wants to defeat us and say that my healthy dad, who was walking seven hours ago, may never again be able to do that.”
Robert and I meet Mom and Dad in a pre-op hospital room at 4 p.m. I’ve never seen Dad like this—flat on his back on a hospital bed, unable to move or look up at us. His voice sounds different: deeper, shaky. The neurosurgeon comes to explain the procedure. Dad will be sedated. It will take an hour to mobilize him and position him for the surgery, and another hour to complete it. The neurosurgeon says the procedure involves using rods to join the bones in the spine to ensure that it is immobilized. I drop further into my seat. Tears fall.
We sit in the waiting room with family and friends while Dad is being operated on. By the time the surgery is done it’s around 9 p.m. The neurosurgeon walks in to explain how the surgery has been a success in terms of immobilizing the spine, yet the outcome is unpredictable. Doctors don’t say whether or not my dad will be able to walk again; the prognosis is very uncertain, as each individual’s body recovers differently. I also think nobody wants to defeat us and say that my healthy dad, who was walking seven hours ago, may never again be able to do that. We need to wait three to six months to see if any significant recovery will occur—holding on to a glimmer of hope that Dad will walk again.
We found ourselves faced with a steep learning curve. Paralysis and a broken neck were the last things that came to mind when we got the call that Dad was injured. We learned that SCIs can be categorized into traumatic and non-traumatic. In Dad’s case, he sustained a traumatic SCI, which occurs when a physical impact damages the spinal cord. “The injury of the spinal cord can be thought of as a two-step process: the initial step is the primary injury, which is called the mechanical injury, due to the initial trauma,” says Dr. Michael Fehlings, neurosurgeon at Toronto Western Hospital. “Then there is a series of biochemical and biomolecular effects that occur inside the neural tissue, which amplify the effects of the original injury. This is generally triggered by reductions in blood flow.” Following this, inflammation occurs, which triggers cell death. This causes secondary cell injuries, which can amplify the effects of the initial injury. Hearing all this, we begin to wonder what recovery and treatment might look like. We know instinctively we’re in for a long journey, but nothing can prepare us for the daily emotional and mental toll.
“I still hoped one day I would be able to feel my dad’s arms lovingly reach around and hug me.”
The initial treatment focuses on surgery and intensive care (we learned about this as the logistics of Dad’s surgery were explained). The first goal is decompression of the spinal cord, and the second involves the placement of implants into the spine—typically bones, screws, plates or rods to stabilize the damage. Early surgical intervention has been shown to improve outcomes, although it is not always medically possible. The intensive care unit (ICU) focuses on providing individual care because patients can have significant cardiovascular and respiratory complications. An important focus is maintaining blood flow to the spinal cord. Dad’s stay at the Trillium hospital would last approximately 10 months.
It is uncommon for someone to make a complete recovery after a complete spinal cord break. According to Fehlings, with early surgical intervention, about 40 per cent of patients will substantially recover some amount of sensory and motor function. Although the odds of recovery are less than 50/50, they are a lot higher than they used to be, he says. These improving-but-still-not-great odds have to do with the fact that the central nervous system is extremely sensitive to damage, and the adult mammalian nervous system does not effectively regenerate.
Despite this information, I still hoped one day I would be able to feel my dad’s arms lovingly reach around and hug me.
The Early Stages
The day after the fall, we arrive at the hospital early in the morning. This is the beginning of a new pattern. We sit in the ICU of the Trillium hospital for hours, day-in, day-out, my grandmother and uncle accompanying us every day. It wouldn’t be until a few days after New Year’s Eve that Dad would be allowed to eat solid foods again. Mom and I sit in Dad’s room, as usual, watching him as the nurse feeds him pasta, his first piece of solid food since the fall. But Dad has trouble swallowing his food. He gasps for air. The nurse makes several attempts to clear his lungs, also calling for a respiratory therapist to assist. He needs to be put on oxygen. The next day, the oxygen isn’t enough, and he is intubated with a breathing tube and connected to a ventilator. As if the inability to move isn’t bad enough, now he can’t breathe independently.
The C4 vertebra, which we would later find out was what had been broken by the fall, contains nerves that control the diaphragm, which facilitates breathing by contracting and pulling air into the lungs. With the spinal cord first severed and now fused, Dad has difficulty coughing and clearing his lungs. He’ll have to remain on the ventilator for six to eight weeks. He’ll be alert, but unable to speak. They will perform a procedure on him called a bronchoscopy, which involves inserting a thin, lighted tube down the throat and trachea and into the airways. In Dad’s case it is used to clear large secretions of fluid from the lungs. They perform this procedure three times during his 10 month stay. For the first one he opts to stay alert and watch, but for the other two he is deeply sedated.
The inability to clear his lungs is a precarious situation, but it is also one of the common complications associated with SCIs. Paralysis of nerves and muscles that control breathing reduces lung capacity, renders coughing ineffective, and makes breathing more tiring. In turn, people can experience recurrent pneumonias, fluid around the lungs, and collapsed lungs. Respiratory complications are the leading cause of mortality in patients with chronic SCIs.
Several days earlier, on New Year’s Eve 2016, five days after the accident, my family and a few close friends gathered at the hospital. We ate a homemade family dinner in the cafeteria. Although Dad was sedated and not alert, we were committed to being there with him—even though there didn’t feel like much to celebrate. At 11:59 pm, we went into Dad’s hospital room to see the clock strike midnight. I turned to Mom, hugging her tight. Dad was in bed, his eyes were closed, and was unresponsive due to the medication. I whispered to him, “Happy New Year’s, Dad,” unsure if he could hear me. This was not exactly how we envisioned New Year’s, but we had our family and friends surrounding us, showing us we were not alone. More importantly, Dad—my hero—was fighting every day to stay alive.
A month after the accident, Dad remains in intensive care. He’s still on a breathing tube. This is how he spends January 26, his fiftieth birthday. The nurses try to cheer him up. They decorate his room with balloons and streamers. He is well known among the nurses in this unit of the hospital—which may or may not be a good thing. “They allowed me to have beer on a sponge so I could taste it in my mouth,” Dad says. “It had been one whole month since I had any food. It was extremely hard not to swallow it.”
In February, they attempt to wean him off oxygen and remove his breathing tube, but his oxygen levels almost immediately drop and he has to be reintubated. Finally, in March, the ICU doctor advises that a tracheostomy, or trach, is the best option: he cannot stay with a breathing tube for that long, and he might need more assistance with his breathing. This involves putting a hole in Dad’s trachea and inserting a tube. It will still be connected to a ventilator, but the hope is that Dad can be weaned off and connected to an AIRVO machine—a humidifier that delivers warm, humidified respiratory gases. While the trach remains connected to the breathing machines, we can’t hear Dad speak, but we can read his lips. He tries to talk to us, mouthing words, but it’s tough to understand what he’s saying. It’s frustrating. The respiratory therapists clear mucus from his lungs, ensuring he has enough oxygen to survive.
In April, four months into Dad’s battle in the ICU, the doctors remove the feeding tube in his nose and put one directly into his stomach. That same month, he is moved to the step-up unit, the transitional ward between the ICU and a regular unit. Maybe we’ve seen the last of the ICU, I naively think.
It’s 1 a.m., three days after Dad’s transfer to the step-up unit. Mom and I wake up to a phone call in the middle of the night. The nurses tell us they’re sending Dad back to the ICU. He’s having trouble breathing and has a high fever. We speed to the Trillium hospital, and are at Dad’s side by 1:15 a.m. He’s back on the ventilator, and we spend the night. At some point the doctors come to tell us he’s contracted hospital-acquired pneumonia. I watch his oxygen levels on the hospital monitor as if it is the climax of a Spider-Man movie, unable to take my eyes off the screen. Every time it drops below 90, the nurses rush into the room, attempting to bring his oxygen back up to a healthy level, anything above 95. As Dad battles pneumonia, the nurse and doctor tell us that Dad is “extremely sick, and suffering.” I burst into tears on Mom’s shoulder.
I do not leave the room. The nurses, doctors, and respiratory therapists all work tirelessly to help him recover. He overcomes his pneumonia. Again, they slowly wean him off the ventilator a few days at a time, depending on how his body handles it. The support Dad receives drives his recovery. “My wife would spend morning to night with me because she and my daughter were the only two that could read my lips,” Dad says. He looked forward to seeing his kids—me every day and my brother Robert on weekends because he was away at University of Guelph. “Danny and Chiara Stirpe, my best friends, would come to see me every day after cooking homemade meals for my wife and daughter,” he recalls.
“Our family’s new norms involve uncertainty, daily hospital visits, and assuming more responsibility than we bargained for.”
By late June, doctors decide Dad can remain off the ventilator, which ultimately leads to his transfer back to the step-up unit. The smell of Tim Hortons coffee fills his nostrils—his first scent since December, his trach having been connected to the ventilator the entire time. The road to recovery appears to be here, yet there is a level of disbelief regarding the happy event. Dad has always lived an active lifestyle. He is an outdoorsman and loves to fish. He has never been a homebody—if anything, he’s been a busy guy. He had even taken up hot yoga. The idea of learning a whole new way of life, with limited mobility, begins to settle in—for everyone.
In the neurological step-up unit, Dad continues to work with nurses, respiratory therapists, occupational therapists, and physiotherapists to strengthen his body, and social workers and psychiatrists to strengthen his mind. He must re-train himself to do unconscious physical tasks, such as sitting up in a chair. He still is unable to move anything below his shoulders. He must relearn how to strengthen his cough and regulate his breathing so that he can clear his lungs himself. Then there is the mental hill to climb: a perfectly cognizant mind trapped in a body struggling to complete the simplest tasks. Knowing he needs to rely on someone to be his arms and legs is a feeling for which Dad is wholly unprepared.
My family and I learn to celebrate the little wins, whether this is seeing him sit up in a chair for a longer period of time than the day before, smiling and socializing when visitors come, or just simply hearing that his condition has stabilized. The end goal has always been to get Dad home. As a family unit we’re prepared to take on whatever this entails. His radiant smile and vivacious personality had filled our home with life, something that we’ve been lacking the last seven months. Mom spends morning to evening at Dad’s side, taking two years off work and assuming the role of primary caregiver. She copes with her overwhelming array of emotions as best she can. My 19-year-old brother assumes Dad’s household tasks—garbage removal, lawn-cutting, snow shoveling, even barbecuing (although he’s not quite as good at it). Our family’s new norms involve uncertainty, daily hospital visits, and assuming more responsibility than we bargained for. Yet we’re thankful that we still have Dad to see us celebrate milestones in our lives—despite it being from a sterile hospital room.
A couple of months later, Dad is transported to the neurological ward in the spinal surgical unit of the Trillium hospital. It’s here that he begins to learn the practicalities of living with an SCI. He works with occupational therapists to get fitted for a wheelchair, a process that involves deciding which model will best fit his needs, and one that has to be repeated once he gets to rehab. It is also here that a speech language pathologist tells him he will never be able to swallow solid food again. Being an extreme foodie, this news crushes him. But after the meeting, he says, with determination and a few cuss words, “Oh, I will eat again, just watch me.”
Sure enough, Dad proves his naysayers wrong. He can now eat everything. After eight months on a feeding tube, he’s had to relearn how to properly swallow food. The SCI forces him to retrain any function he has left, which is not an easy task—mentally or physically.
It Ain’t Easy… or Cheap
Dad needs to decide on a wheelchair and ensure it is properly fitted to his comfort and needs. This is a vital component to his ability to maintain any sort of independence. Due to his injury he is recommended a sip-and-puff wheelchair, which translates breath pressures into non-proportional driving controls and commands for all wheelchair and seating functions. This high-tech assistive technology comes with a large price tag. A sip-and-puff wheelchair costs around $35,000. Through the government’s Assistive Device program, 75 per cent of this cost is covered. The remaining 25 per cent is left to the family to pay.
Another imperative involves retrofitting the house to ensure it is accessible for Dad’s arrival once he is stable enough to come home. As if there isn’t enough going on, Mom and my brother and I must live at my grandmother’s place as our house undergoes major renovations.
In October 2017, post-acute care begins. Lyndhurst, in Toronto, has both inpatient and outpatient services. Dad is lucky to get a room in early November. He becomes an inpatient at Lyndhurst for four and a half months, working with a team to learn how to navigate life after such a traumatic change. He is assigned a ward, and a team of care professionals including a physiatrist and a rehab specialist. Every day at Lyndhurst is different: he receives physiotherapy, occupational therapy, speech therapy, recreational therapy, and psychological therapy. “My family doctor at Lyndhurst and psychologist were instrumental in changing my thought process,” Dad says, “giving me confidence that I could go home and live there with the tools they gave me.”
At Lyndhurst, Dad is set up with his high-tech wheelchair so he can practice his independence. He’s also put on a regime that works to empty his bladder and bowels. For urine, they use a machine that analyzes how much urine fills your bladder. Based on the numbers produced, the physiatrist then determines how often intermittent catheterization is required. This is when a catheter, a tube that moves fluids in and out of his body, is passed through his urinary tract to empty his bladder. For bowel movements, they provide a combination of laxatives so that he empties his bowels at regular intervals. With an SCI one cannot control these functions. This regime will allow him to live his most productive life.
At the hospital, they needed to wash him with water and soap while he remained in bed. Here, at Lyndhurst, he is brought into a shower with a commode, a chair that allows him to safely be seated while he takes a shower or uses the washroom, where he feels warm water falling from above directly onto his skin—a shower, a real shower, for the first time in ten months! The simplest things make Dad feel a sense of normalcy creeping back into his life.
Finally, discussions of returning home begin to surge, a discussion that almost seems too good to be true after the last year. I think, finally, I will be able to come downstairs and see my dad sitting there. Or we can gather around our dinner table and eat together as a family for the first time since the accident.
“Inconsistent care dehumanizes people and adds additional stress to not only the person requiring care, but their immediate family.”
Dad’s initial length of stay at Lyndhurst was estimated at two and a half months, but after going over all the changes we’d have to make to bring him home, staff recommended extending his stay by another month and a half. There was so much to do and learn—not just for him, but for our whole family. He had to practise how to properly manoeuvre his complex sip-and-puff wheelchair, a difficult task to learn. A ramp is put in our garage so Dad can come in and out of the front of the house. Another ramp is put in at the back door so that he can access the backyard as well. We convert the dining room into a bedroom on our main floor. We purchase a $7,000 hospital-style bed with an air mattress. A $3,800 ceiling lift is installed so we can transfer Dad from his wheelchair to bed. On the main floor, a wall is knocked out to accommodate an accessible bathroom and a $2,700 commode. A thousand dollars’ worth of medical supplies, about one month’s worth, is stockpiled in our basement so Dad has everything he needs right here. The total cost of our renovation for the main floor is $40,000, an expense that jars all of us.
Lyndhurst is excellent, but during the process of Dad coming home, we discover a major problem with home health care. Nurses and personal support workers (PSWs) constitute a lifeline for people with spinal cord injuries. They’re relied upon to get patients out of bed in the morning and properly perform their care. The Home and Community Care Services (HCCSS), known as the Local Health Integration Network until 2021, was established by the Ontario government to plan, coordinate, integrate, and fund health services at a local level. Mom and Dad get to know and understand the HCCSS while planning for Dad’s nursing care at home. While at Lyndhurst, Dad is given a care plan to continue treatment once he returns home. After leaving rehab he is assigned a care coordinator through HCCSS who works with him to determine the support needed to execute this plan. This sounds great, but it is not always a smooth process.
Every morning, Dad requires two people to get him ready for the day, a nurse and a PSW, mainly provided through the HCCSS. Then in the afternoon a nurse comes to the house to do daily medical procedures. At night, he requires two PSWs to transfer him to bed, and a privately sourced nurse to handle nighttime procedures such as intermittent catheterizations to drain his bladder, as well as breathing therapies. Mom has had to advocate countless times for Dad to get the proper and consistent hours of care; they give you the bare minimum unless you fight for more. Let’s say the phone at our house rings and it’s one of the care coordinators HCCSS outsources, letting Dad know they’re unable to find a PSW to help the nurse get him up in the morning. Anxiety begins to set in, because without a PSW, Dad won’t be able to get up. Now it’s Mom’s responsibility to assist the nurse in getting Dad ready. She works a full-time job as a French teacher, and has two kids and a mother to take care of. The reasons for these absences are difficult to nail down—poor scheduling, last minute sick calls with no trained replacements, and lack of PSW retention. Agencies and care coordinators need to ensure that there are proper measures in place when staff are absent. They’re providing a vital service that people like my dad rely on to live. Inconsistent care dehumanizes people and adds additional stress to not only the person requiring care, but their immediate family.
Chris Stigas has experienced similar stresses, and understands the lifeline that support workers provide. In 2014, Stigas slipped in his bathroom in the middle of the night, hitting his neck on the bathtub. He was paralyzed from the chest down. “I remember my surgeon telling me, ‘Today we are going to be talking about survival, but in a year, we are going to be talking about reintegration, and in two to three years we are going to be talking quality of life,’” says Stigas. “What quality of life?” he thought to himself. But as time progressed, he started to figure things out, and learned to be grateful for the blessings he had. Stigas has been the president at HandiHelp Accessible Innovation since 2017, and in his personal time he advocates for PSW retention and recruitment within the community.
Nurses and PSWs may not be highly experienced with patients who have spinal cord injuries. In rehab, there are registered nurses taking care of patients. They’re trained a certain way, and familiar with spinal cord injuries. “The problem is while there are standards of care in a hospital setting, those go away when you get home” Stigas says. “You get to the community, the drop of skill-set is enormous, and it is up to you to understand how to direct your own care.”
Stigas believes that this needs to be a tiered job, with the eventual option of becoming a nurse. For example: year one they are house-sitting people, year two they help with transferring and feeding, year three they can do intermittent catheterization, year four they can clean tracheostomies and colostomy bags, and year five they have all the prerequisites to become a nurse. He advocates for this tiered approach because he believes it can assist the healthcare system while giving PSWs a path to a career in nursing and increasing their retention while they’re on that path. This approach will help people have more qualified and consistent care.
A Difficult Step
The transition from rehab to home is one of the hardest steps in the recovery process. This is mainly because the length of stay for inpatient rehab is shorter than the time someone with an SCI needs when it comes to intensive therapy, normally one to two years worth. This is due to a few factors, including the increased cost of living when staying in a facility, as well as the healthcare system’s goal of transitioning people back into the community, says Peter Athanasopoulos, director of public policy and government relations at Spinal Cord Injury Ontario (SCIO). SCIO is an organization that advocates, supports, and offers services for people with spinal cord injuries and other disabilities. At the start of Dad’s at-home care my family relied on SCIO for additional resources and support. “In the transition of care there is a big disruption in the continuity of therapy,” says Athanasopolous. While functional recovery is interrupted, so too is the subject’s independence. These interruptions are commonly caused by issues with what are known as the social determinants of health. In this case, these are the non-clinical things that people need to be independent and carry out their rehabilitation, such as an accessible home, accessible transportation, income security, social participation, and employment.
Making matters of a SCI worse is the less-than-seamless transition from inpatient rehabilitation to home care. Athanasopoulos and others have determined four major gaps in the process: access to assistive devices, access to catheters, recruitment and retention of qualified PSWs, and the challenge of a fully accessible Ontario. These gaps sound all too familiar and pose problems that my family deals with daily. Coordination of required services is key and these grey areas are where we see problems arise.
“Staffing issues, heightened throughout the pandemic, leave vulnerable families in precarious situations.”
Dad was constantly worried about contracting COVID, not only for his own health, but for his nursing care. If he got COVID, he thought few staff would want to expose themselves to him. And this would ultimately result in another hospital trip, as he could not receive his routine care at home. Unfortunately, this fear became a reality. In November 2020, my entire family contracted COVID. At the time, COVID tests were difficult to seek out. To get Dad tested, we had to make calls for people to come into our home and test him, since it was unsafe and virtually impossible to get him to a testing centre. Once that first hurdle was cleared, more obstacles surfaced. While being isolated in her room, Mom had to contact HCCSS and disclose that we were COVID positive. The care coordinators would call and say they had no available PSWs to get Dad up in the morning or put him to bed. Thankfully, his HCCSS assigned nurse, with whom he built a special bond, continued to provide care for him. We were also designated as an emergency care case by HCCSS, which means we were considered a higher priority than normal when it came to receiving care.
Finding a PSW in general was a challenge. One of Dad’s regular PSWs left, never to return to our house because of the COVID situation. Mom was left working with HCCSS to find someone for Dad’s overnight care. While COVID presents the trial of not knowing what each day will hold, nursing care adds another layer of complexity. These staffing issues, heightened throughout the pandemic, leave vulnerable families in precarious situations. My mom, sick with COVID, had to put on the necessary protective equipment to take care of my dad, who had not yet tested positive when PSWs wouldn’t show up. As an extremely at-risk person, this severely increased his chance of contracting COVID, which he did. Finally, Mom was able to find someone to cover his overnight care, which allowed him to remain at home, isolate, and recover—but the process was not an easy one.
People with SCIs not only require nursing and PSW care, but also regular physiotherapy visits, occupational therapy, recreational therapy, and counselling. Individuals with an SCI cannot stay in rehab indefinitely, and physio is always recommended to continue treatment and education. Coordinating these additional supports became an added consideration and expense once Dad was back home.
Lindis Collins-Bacchus is a physiotherapist and owner of her own practice who specializes in treating clients that have a brain-injury, SCI, or stroke. She works predominantly in the community setting—at home with clients, partnering with local resources, such as other therapists, vendors, and community gyms and pools, to help them re-integrate into the community. A major component of physiotherapy is the physical aspect, like exercise and stretches. To help clients settle into their lives it is imperative to problem-solve while working through their physical and psychological needs. During home visits, physiotherapists will ensure the home is wheelchair compatible and suitable for the client’s home needs, and provide education and advocacy for their client as well as the client’s immediate family and caregivers. The rehab and hospital facilities train people to have specific treatments tailored to their jobs. However, cohesive collaboration of the people involved, such as therapists and social workers, and people in the community seeking care, can offer a wider range of assistance than the client traditionally thinks, says Bacchus. The community healthcare setting allows for a deeper connection to be formed between clients and their service providers.
Dad and his physiotherapist spend an hour together every week. As I sit upstairs for my Tuesday school Zoom class, I hear the cheerful chatter travel through my house as they engage in discussions about their weekends, plans for the week, and life in general. This interaction and socialization is really good for Dad.
Another component of Bacchus’s job is to perform a subjective assessment of the client’s working life, hobbies, and relationships prior to the accident. The purpose is to develop recovery goals based on the patient’s life prior to whatever condition rendered them in need of physiotherapy. “It is important,” says Bacchus, “to view these clients as a person with an injury as opposed to the injury and then ignore the person.”
Best efforts of people like Bacchus aside, the disparities that continue to exist in home health care only further the tests families face. There needs to be people skilled in treating SCIs, family members need to learn how to do things right, and clients like Dad need to proactively learn, every day, how they can live the best version of their lives.
Life after an SCI
In 2021, it had been five years since the accident. My dad still has no function from the shoulders down, but he sits in the living room on his retrofitted wheelchair and accessible computer. He’s waiting to give a presentation via Zoom to a Toronto Metropolitan University nursing class. He speaks to them from a patient’s point of view about the importance of nurses and how proper care truly improves quality of life. My dad is my best friend, and the most important person in my life. I’m so proud to see him use his experience to inform and educate others. Later that day, we wait for the Wheel-Trans bus to pick him up. Mom boards the bus with Dad, while my brother and I take the car. We’re responsible for bringing Dad’s portable ramp, which makes it possible for him to get up small steps—something we cannot afford to forget when we leave the house. We’re going to a family friend’s place for a barbecue. That night we’re all sitting around the table watching sports on TV, laughing, drinking, and eating. It feels like a typical Friday night before Dad’s injury. So, yes, some normality has re-entered our lives. This version of normal may not be the same as it was before, but at some point, we must ask ourselves, well, what is normal?
Dad is home. He’s cracking jokes. He’s asking my brother and me where we’re going when we’re leaving the house, just like before. At-home health care presents its own challenges, sure, but it is important to remember there is life after an SCI. Be your own advocate, practice resilience, develop personal goals, be kind to yourself, be patient.