Caregivers battle isolation by telling their stories
Moms who look after children with disabilities share their lives in candid documentaries featured on a new website for caregivers
The Port Coquitlam home of Sheila Gutsche is so immaculate and bright it’s almost impossible to imagine what the family endured after Gutsche’s daughter, Shara, suffered a life-altering brain injury.
The walls are hung with Shara’s beautiful watercolours and Shara, 41, is a bubbly presence, laughing and joking. But 28 years ago when Shara was struck by a drunk driver who ran a red light, her life was changed forever. “The doctors didn’t know if she would live through the night,” said Gutsche.
Shara, just 13, hovered between life and death for several weeks and underwent two major brain surgeries. Part of her brain’s frontal lobe was removed. Doctors suggested she be taken off life support, but Shara’s parents refused.
When she finally emerged from the coma, Shara could no longer speak, walk, talk or eat independently.
Gutsche gave up her job to become Shara’s primary caregiver. She was responsible for helping her daughter to bathe and go to the toilet, to learn to speak and eat, and get to physiotherapy and doctor’s appointments.
Her daughter was a different person, and so was she. No longer a mother to a giggling teen, no longer part of a community of other mothers raising healthy children, Gutsche struggled with isolation, depression and anxiety.
It’s a story of challenge and recovery she shares now, without reservation, in the hopes of helping others on storiesforcaregivers.com.
The website, which features short documentaries, webinars, TED talks and virtual bulletin boards where caregivers can post their stories and reach out to others, was produced by Vancouver-based Bannister Bergen. Bergen accessed financing from the Telus fund, which has a mandate to produce content that supports health and well-being.
Bergen said he hopes the site will be a resource, and a comfort not only for caregivers but those who may one day be caregivers. “People like myself,” said Bergen, 41, a father of three. “My parents and my in-laws are in their 70s, and my wife and I have had the conversation frequently about the health and welfare of our parents as they get older.”
According to Statistics Canada data, 28 per cent of Canadians aged 15 years and older provide care to a family member or friend with a long-term health condition, disability or aging needs.
Whether through accident, illness or age-related difficulties, the role of caregiver often arrives unexpectedly. Family members can find themselves in the role without much choice. In addition, the work they do is often invisible, said Bergen.
Storiesforcaregivers.com features three original documentary series. Dr. Yvette Lu, a family practitioner, participated in the website’s documentary series “House Calls.” Lu visits with family caregivers to troubleshoot challenges, whether it’s finding time for oneself as a caregiver, or learning to manage the needs of a family member with a chronic disability.
“Usually caregivers have multiple responsibilities in addition to caring for the ones they love, or they are what we call ‘sandwich caregivers,’ ” said Lu. “They take on a lot.”
According to the 2002 Stats Canada General Social Survey, about 27 per cent of Canadians between 45 and 64 had children under 25 living with them and also helped care for an elderly family member.
One of the biggest challenges for caregivers is self-care, said Lu. “On a plane, when the oxygen masks fall down you have to put one on yourself first, before you put one on someone else. If you can’t breathe, how can you help someone else?”
Gutsche’s story is featured as part of the site’s “Caring for those Who Care” series. Gutsche said her daughter’s accident changed everything. “Even if I thought about a scenario like this, I didn’t realize how devastating it was. You become isolated.”
Gutsche sought help, but a bad reaction to medication for depression led to hospitalization.
In hospital, Gutsche found a doctor who simply allowed her to cry and let the emotions out. “The truth is you can’t take a pill to get over something like this,” said Gutsche.
Shara learned to talk, walk and eat again, and Gutsche learned to embrace her family’s new life.
Although Shara needs help with picking out clothing, with her memory and unscrambling her thoughts, she has friends and participates in activities like comedy classes, painting, woodworking and volunteering at the local thrift shop.
Gutsche found ways to practise gratitude. “It’s a joyful experience, too, because it opens your eyes to new things. Through the brain injury community we’ve met so many people, and we know that we’re lucky because we all have each other.
“The thing that needs to change for caregivers is awareness,” said Gutsche. “Whether you are caregiving for a stroke victim or Alzheimer’s, a brain injury victim or children with disabilities, it’s the invisibility of the work that you do and the total lack of acknowledgment that hurts.”
Gutsche believes the website will be a lifeline to other caregivers. “Connecting to other people who are going through what you are, or something worse, when they talk about what they are going through and you see yourself in it you can say, OK, I’m not crazy. This is a human experience.”
Mandie Clark, a Kelowna mom who also let the cameras into her home to share her experiences on storiesforcaregivers.com, said she could not have imagined the life she lives today as the mother of three children, two of whom have special needs.
Clark and her husband Paul are parents to eight-year-old Moses, “Mr. Handful,” who has autism and epilepsy. Five-year-old Rose has cerebral palsy with some mild paralysis on her right side. The eldest, 10-year-old Joey, is mom’s little helper.
The Clarks recently moved back to Kelowna from Calgary to be closer to Mandie’s family. “I was really overwhelmed with the challenges I was facing,” said Clark.
The challenges start early in the morning. Moses gets up at 4 or 5 a.m. every day.
Clark has been working on toilet training Moses “for about five years,” she says with a laugh. “Moses fecal smears. I don’t know why he does it, and I can’t get him to stop. He puts it in his hair. So every morning I’m dealing with that.”
Clark gets up when Moses awakens. First order of the day is to clean up and shower Moses, who finds the sensory input of the experience such an ordeal that he cries and protests. “It’s almost like showering a cat. It’s intense,” said Clark.
She feeds him, prepares clothes and lunches for the other kids and her husband Paul. Joey helps put lunches into the school bags and helps Moses get his jacket on. Moses has funding for an educational assistant at school, but he can only attend a couple of hours a day and lately he’s been running away.
“Today I was called to pick him up early because he left the school five times,” said Clark. “In a public school they are not allowed to put their hands on him so he’s just out wandering around and I have to go pick him up.”
Because of Moses’ needs, Clark can’t work during the day, so she works in a restaurant nightly from 6 p.m. to 1 a.m.
“Sometimes I just feel like I need a light at the end of the tunnel,” said Clark, who tries to have dinner prepped before she goes to work. “I think to myself, do I eat, do I sleep or do I shower?”
Clark said when she gets stuck on thinking about her own difficulties, she imagines “how much more difficult it would be to live inside Moses’s body, and endure that confusion, frustration and additional isolation.”
She believes storiesforcaregivers.com will be an important tool to help others.
“Sometimes you get stuck in a funk of feeling really alone. When you see another parent with the same struggles it reminds you that you are not alone. Other people are going through the same struggles and having successful and happy outcomes.”
Shamira, who prefers not to use her last name to protect her mother’s privacy, said she fought the perception of herself as a caregiver when she first realized her parents needed help some 17 years ago. Although she has siblings, Shamira, 50, found herself in the role of caregiver by default.
It wasn’t just her cultural heritage — Ismaili Muslim East Indian — that added a sense of duty, said Shamira. “The onus seems to be on the women.”
Shamira cared for her father before he died in 2007 in his mid-80s, and has just helped her mother, 86, make the transition to a nursing home. “One of the challenges was the constant onslaught of different medical diagnoses,” said Shamira.
Coming from California to step into the caregiving role added to the challenge. “I didn’t have resources or community. I’ve learned that it’s really not something you can do alone.”
Shamira calls the caregiving process “a profound spiritual journey.” She’s learned to accept the process “without taking on the pain.”
For Shamira, sharing her experience on storiesforcaregivers.com is an opportunity to pay it forward and begin to help others facing similar challenges. “The connection between people who are dealing with the same kind of situation, to feel you are not alone, is huge. We matter.”
“Sometimes you get stuck in a funk of feeling really alone. When you see another parent with the same struggles it reminds you that you are not alone. Other people are going through the same struggles and having successful and happy outcomes.” — MANDIE CLARK MOTHER OF THREE