Teresa is the primary caregiver for her son Albert — “We Gained strength in seeing hope”. Albert is an acquired brain injury (ABI) patient who was admitted in February 2017 for rehabilitation to The Salvation Army Toronto Grace Health Centre (TGHC). Albert suffered head trauma from a self-inflicted gunshot wound and from the beginning there was a lot of uncertainty about Albert’s condition and whether he would survive.
Teresa says that the past two years have been like a roller coaster ride. “There were times along Albert’s medical journey that health care professionals expressed doubt that there would be a positive outcome, and cautioned me that there was a real chance that he might not be able to regain some independence; some even suggested that his survival wasn’t assured.” said Teresa. “There were other health care professionals who gave us hope and told us not to give up; that an ABI patient needs a long time to begin to make progress.
“The one thing you must never do,” she added, “is take away my hope or anybody’s hope — hope is where I look for my goals. We as a family have persevered and did not accept the negative, and chose hope and to find the positive. Today, Albert is receiving rehabilitation and we are grateful to the Toronto Grace.”
When Teresa was asked if she saw herself as a caregiver, she responded that in her opinion, there is no distinction between her role as a mother and her role as a caregiver.
The Change Foundation (TCF) “Spotlight on Ontario’s Caregivers” report/survey showed that 42 percent of those surveyed 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. But 24 percent don’t see themselves as caregivers, have never considered it, or prefer not to say.
Teresa believes it is part of her culture’s customary beliefs that you would support and take care of a love one, your family is important.
Although Albert is making progress at the Toronto Grace, Teresa recently noticed his level of communication has dropped, and she thought he could use more rehabilitation. As his caregiver, she began to do some research and found that his medications were perhaps an issue and needed adjusting.
The TCF survey found 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.
She brought her concerns to the health care team who listened to her and adjusted Albert’s medications. Teresa said, “They listened to me and I respected the health care team’s decision but I also feel they respect me.”
The TCF survey found that 45 percent of caregivers feel they play an important role as a member of the health care team, and 17 percent of those feel that they play the most important role in that team; 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.
Teresa also advocated for Albert to receive more physical therapy sessions. The TGHC health care team agreed to increase the sessions, and also asked if she wanted to participate in providing extra physical rehabilitation for Albert, adding that they would train her on how to do so. She agreed but stated, “I want it understood that I’m the addition to his physical therapy not a substitution.” The health care team understood her wishes and complied.
The TCF survey discovered that 64 percent of caregivers who needed information on how to provide physical support received it (written materials, verbal instructions and/or hands-on training). Only 37 percent received actual hands-on training. Thirty-six percent of caregivers who needed information didn’t receive any.
Teresa believes she is also supported and respected by the nurses, adding that this might be more true for her than others “because I am a registered nurse.” At the time of her son’s injury she wasn’t planning to retire and loved her job as a nurse. But when she was faced with Albert’s situation, there were no second thoughts about what she needed to do.
The TCF survey revealed that 8 percent of caregivers lost their jobs as a direct result of their caregiving responsibilities.
Teresa’s daughters help and support her, but she understands they both have commitments, children and work. Her husband supports Teresa by doing the housework and making meals. He comes to the hospital to visit his son but finds it difficult to remain for long periods of time. Teresa will sometimes arrive at 8:00 a.m. and stay until 8:00 p.m. Although it varies, she estimates that she spends on average about twelve hours a day at the hospital.
The TCF survey revealed that 48 percent of long-term caregivers (those who have served as a caregiver for more than one year) believe the primary doctor of their loved one views them as at least equally important to the team. Sixty-nine percent of intense caregivers (those who provide more than one hundred hours of care a week) feel the same, with 51 percent of them feeling that they are seen as the most important member, and 18 percent feeling equally important.
Teresa realizes how important it is to take time for herself. She says that she takes small breaks: getting a facial, going to Bible study, and once a month s goes to a pot-luck dinner with friends. “If I’m feeling down,” Teresa says, “I talk to my grandchildren or go over to The Bay and do some shopping.” “Also,” she adds, “here at the Toronto Grace I’ve made friends with other patients and family members. If I see someone struggling or having difficulty coping, I go and talk to them because I believe in helping and sharing information and talking about our struggles. The other day there was another mother here who was feeling down and crying, I just held her in my arms and tried to comfort her.”
Teresa does participate in the “Tea for the Soul for families” program. The program was just recently developed by the Chaplains at the TGHC to help family members take time for themselves in a quiet and relaxing environment. Once a month, family members meet with other family members for tea and cookies away from the medical units in a large conference room. Tea for the soul for families is a platform to help family members cope and support each other as they discuss their struggles and concerns. Teresa has attended a few times and agrees that it is a good program. She said, “We were at Tea for the soul and although a mother in our group was crying, I could see that it was helping her to express her struggles.”
Reflecting for a moment, Teresa admits that sometimes she does feel alone but she is quick to say it is short-lived. “I don’t dwell on it for very long,” she says, adding, “I also feel helpless when I look at Albert not talking just sitting in his wheelchair. I know he is frustrated and I also feel that frustration — I ask myself “what can I do to make him better?” Although, a friend reminded Teresa that in the last two years Albert has made some progress, she responded, “Yes, I know but our hardship continues.”
A recent TCF survey focused on how caregivers feel about caregiving. The results of that survey showed that 41 percent feel trapped, helpless and frustrated at times. When Teresa is asked if she feels that the TGHC’s health care team and nurses respect and recognize her as playing an important role in Albert’s care, she answers with a resounding, “Yes!” Continuing, she adds, “I do feel part of the health care team here at the Toronto Grace and I don’t feel invisible because I have a voice, if I do see things that need to be addressed, I speak up and tell them and they do listen.”
By Gerry Condotta
[…] or unrecognized. You can read their stories as mothers and caregivers of sons at the Toronto Grace: Teresa and […]