Maria is the primary caregiver for her son, Jeffrey (“Maria, A Mother’s Story”). Jeffrey was admitted to the acquired brain injury (ABI) program at The Salvation Army Toronto Grace Health Centre (TGHC) in August 2017. His brain injury was caused by a tumour. Since his diagnosis and brain operation in August 2016, Jeffrey has had to endure many challenges: a stroke, three seizures, a regrowth of the residual tumour and blindness. In the last two years, Maria has provided an immeasurable amount of support for her son.
Her weekly routine is an exhausting one. Maria works during the week. She begins her day by leaving the house at 5:30 a.m. and arrives to start work for 6:00 a.m. She works for a dry-cleaning company in the city, operating a presser and has been doing this job for thirty years. She leaves work around 3:00 p.m. It takes her approximately an hour of travel before she arrives at the TGHC to see Jeffrey.
She stays at Toronto Grace until 9:00 p.m. sometimes longer, depending, she says, “if Jeffrey is not agitated or having an outburst.” Jeffrey is prone to outbursts and other forms of extreme behaviour. The health care team is seeking to provide behavioural therapists and supports to help him identify what triggers them. Maria says she is confident that her son receives good care when she is not there, but as his mother she doesn’t want to leave on those evenings when Jeffrey is upset until he has calmed down. On those evenings, her departure from the TGHC can stretch beyond 9:00 to 9:30 p.m. or later. Caregiving can be time-consuming and Maria would be considered an intensive caregiver.
The Change Foundation (TCF) Spotlight on Ontario’s Caregivers survey revealed that while 45 percent of caregivers say they spend less than four hours a week, 31 percent are classified as intensive caregivers since they spend ten or more hours a week looking after their loved ones.
The trip home takes another hour. She estimates that she travels approximately fifty kilometres a day – “It’s a lot of travelling,” she says, “I do get tired.”
TCF survey showed that urban caregivers spend longer travelling to reach their loved one. Forty-five percent travel for more than thirty minutes, compared to 36 percent of suburban and 33 percent of rural caregivers, who generally travel less than half an hour.
Maria’s husband, who works long and hard hours in construction, supports her by preparing dinner and doing household chores. In my interview with Maria, she tells me with a smile “I do eat his cooking.” Her eldest son, John, Jeffrey’s brother, also helps Maria with Jeffrey’s care and is always there when his mother needs his assistance.
There are times when Maria needs to leave work in the middle of the day to accompany Jeffrey to an appointment. The other day, she needed to be with Jeffrey, who had an appointment at St. Michael’s Hospital for radiation treatment. “My employer,” Maria states, “is very considerate and understanding of my situation.” But on those days, she continues, “I try very hard to finish all my work before I leave.”
TCF survey found that most caregivers are able to manage their caregiving duties by making special work arrangements. Thirty-nine percent left work early, 35 percent took days off, 34 percent took time off during the day, and 25 percent went late to work. Fifty-seven percent of workplaces try to make concessions to allow their employees to handle these responsibilities. But 32 percent of caregivers say their workplaces don’t even try.
Maria clearly understands that she is Jeffrey’s caregiver. “I am his mother,” she says, “but if I did not take on his caregiving by helping with his daily activities of living — filling out disability forms and hospital consent forms, meeting with our lawyer, keeping appointments, managing his care with the TGHC health care team — no one else would.… Yes I get support from my family, but I realize I’m his primary caregiver.”
TCF survey found that 42 percent self-identify as caregivers. While the rest are less likely to see themselves in this way, when the definition of caregiver is explained to them, an additional 35 percent agree that this is what they are. Twenty-four percent don’t see themselves as caregivers, have never considered it, or prefer not to say.
Maria feels that she plays an important role on the TGHC interprofessional health care team, and when she meets with them she is not afraid to ask questions or voice her concerns. She says that they listen to her when she wants to discuss an issue concerning Jeffrey’s care. She believes her relationship with the nurses, as well as the rest of the team is strong. “The other day,” she says, “I needed to confer with Jeffrey’s dietitian — also a member of the health care team. We met and we were able to resolve the issue.”
TCF survey discovered that 45 percent of caregivers feel they play an important role as a member of the healthcare team, and 63 percent of those caregivers who view their role as either the most important one in the team or as equally important as those played by the rest of the team, believe that primary doctors view their role as important. Similar proportions feel nurses (63 percent), therapists (63 percent), personal support workers (66 percent), nurse practitioners (58 percent) and specialists (55 percent) see their role as important. The survey also revealed that 91 percent of caregivers say they are informed about the health condition of the person they are caring for with 52 percent believing they are very informed.
Maria’s future plans with her husband remain uncertain. Both are Portuguese and were planning to retire to a house they have in Portugal. However, those plans may not work out now, since Jeffrey’s condition does not allow him to fly.
TCF survey revealed that 51 percent of caregivers report that there have been negative impacts on their personal time, 49 percent say travel plans have been disrupted, and 48 percent have seen impacts on their social life, including spousal relationships and friendships.
“Of course, it’s possible that things can change,” says Maria, “but for now I can only think about Jeffrey and how difficult it is for him.”
“Some days,” Maria says, “it’s extremely difficult for me to try and control all facets of Jeffrey’s care, as well as my life, my work and family. Life does not stop because of Jeffrey’s illness and we need to continue to take care of our everyday responsibilities. I work really hard but some mornings I wake up feeling broken. This is when I let go of the frustration because tomorrow is another day. Tomorrow,” she adds, “tomorrow I will feel better, stronger to face the situation.”
TCF survey showed that 64 percent feel tired, 55 percent feel frustrated, 54 percent feel anxious, and 51 percent feel overwhelmed. Thirty-six percent feel depressed and 33 percent feel resentful.
Maria is conflicted and feels guilty that she does not spend more time caring for Jeffrey. However, she also realizes that finances would be a problem and that she needs to work. “Jeffrey,” she says, “is receiving some disability but it is not enough and expenses have increased.”
TCF survey found that 36 percent of caregivers have seen a negative impact on their financial situation, particularly those looking after a child (54 percent) or a spouse (46 percent). It also revealed that only 24 percent are receiving funds from benefit plans and 23 percent from government supports.
Despite all of the difficulties that Maria faces as a caregiver, she is committed to doing whatever it takes to help her son. Maria understands that she must continue to advocate for Jeffrey and by working collaboratively with the TGHC health care team she is able to raise any concerns she may have towards her son’s care. As a primary caregiver for her son, Maria feels that her contributions to the TGHC health care team are recognized as important. She feels that she is helping her son and that she, herself, is valued.
By: Gerry Condotta