Care for the caregiver often overlooked

Family members shoulder a hefty load through cancer diagnosis, treatment and beyond

Peter Kossowan knows too well what caregiving for a loved one with cancer looks and feels like. Early in his marriage, he and his wife Millie lost not one, but two sons to leukemia before the age of five, despite being told the chance of having more than one child with the disease was “one in a million.”

Peter Kossowan faced cancer from all angles but still thought of others along the way. photo by Constantine Tanasiuk

He still recalls the doctor’s visit in 2003, nearly 40 years after his sons’ deaths, when he would learn his wife, too, had cancer. It was a devastating experience to sit in the doctor’s office and hear the diagnosis was colon cancer. He was in shock. “Then you think to yourself, ‘What are the options?’ and ‘What should you be doing?’ ” Kossowan says.

Despite surgery and treatment, Kossowan became a widower in 2005. Feeling lost, he spoke to a neighbour who mentioned the Alberta Caregivers Association (ACGA) – an organization geared to assist caregivers with their needs with support – that she’d been involved with. He joined, ultimately becoming board chair. Now past-president, he mentors others whose partners, sons, daughters, parents or friends are suffering from long-term illnesses. His only regret is not learning about the group sooner, and taking advantage of its counselling services while his wife was alive and he was her caregiver.

“There is a lot of grieving in caregiving … and that’s often not acknowledged. There’s just the sense that you don’t count anymore,” says Anna Mann.

Kossowan admits he found some solace in speaking to people with shared experiences of seeing someone they love fall ill or dealing with a long-term illness and being responsible for their care and comfort. He appreciated a new level of understanding that had been lacking from friends, who, through no fault of their own, didn’t always know what to say.

“A lot of the supports that were out there for the caregivers were about making them a better caregiver for the person they were taking care of rather than addressing their own needs,” says Anna Mann, executive director of ACGA in Edmonton. That approach didn’t address the emotional side of what caregivers were going through. Unable to find anything existing that met their individual needs, a group of caregivers started their own organization: the ACGA. The association was founded in 2001 as a non-profit organization and now serves about 200 people per year with one-on-one caregiver advisors, as well as offers group programs to another 250 or so and some drop-in sessions.

The charity partners up with about 15 other agencies in total, but their connections include close to 50 other agencies to provide its overall, much-needed support network. “The consensus, when we were talking to caregivers, was even though there are a lot of differences in the experience, there are still things that are kind of the same across the board: the sense of guilt, the sense of isolation and the sadness,” Mann says. “That’s something that doesn’t come up a lot. There is a lot of grieving in caregiving and that’s often not acknowledged. There’s just the sense that you don’t count anymore.”

Kossowan, now 83, encourages caregivers to have outside interests to maintain balance throughout their painful and trying time. He took up photography late in life by working it into outings with his wife. On days she was feeling well enough, Kossowan and his wife would walk together while he’d photograph things in nature that caught his eye, a hobby he has continued after her death. Sometimes he’ll hand out greeting cards he’s made with his photographs to perfect strangers to brighten their day, he says.

He also stresses caregivers reach out to groups like ACGA. “What is really important, I believe, is knowing that you’re not alone in that kind of a circumstance,” Kossowan says. “Knowing that there are other people and when they start telling their story, sometimes you can say to yourself ‘I’m still fairly lucky under the circumstances’ because some people have it a lot worse than you do.”

Kossowan makes others smile with gift cards he makes with his own photos. photo by Constantine Tanasiuk

Lesley Johnston-Woo is a social worker at Edmonton’s Cross Cancer Institute assigned to patients and their loved ones through Alberta Health Services’ CancerControl (formerly Cancer Care). That means she often deals with personal directives, powers of attorney and wills. “The biggest would be the financial part, making sure you’re helping not only the patient navigate the resources available to them, but the spouse or caregiver as well,” she says. “If someone is palliative, helping that spouse look at the options that they have to take off the time from their work to be with their loved one, and then also exploring other sources of help out there in the different communities and other non-profit organizations.”

In smaller centres like Grande Prairie, the social worker’s role is a little more hands on. Belle Thomas serves patients and families out of the Grande Prairie Cancer Centre, covering a large portion of northern Alberta and B.C. One thing is common to every cancer case, she says, and that is life will never be the same. “There’s a lot of anxiety related to what the future’s going to hold,” she says. Even upon completion of treatments, there is the ongoing worry for patients and caregivers of recurrance and dealing with long-term residual treatment side effects.

Thomas says many of the psychosocial options for caregivers are limited in the north and that her role involves a lot of reassurance and information. Caregivers in northern Alberta are referred to online support groups and books rather than in-person meetings, and Thomas finds herself doing many referrals by phone.

She says the increase of online support is good, but only speaks to a limited portion of the population because it’s the younger people who tend to access online resources. Some of the northern clientelle lack access to computers while others do not speak English. Thomas says she gives them a general idea of financial resources available out there as well as accommodations.

Mann notes that money is almost always a worry for caregivers. “Most of the time they are left dealing with the stuff the person who’s sick can’t – getting the finances in order, getting the accommodations set up, taking care of the money and stuff like that,” she says. Many caregivers need to continue working to make ends meet, which takes them away from spending time with their loved one at chemo sessions, for example, and increases their stress.

She sometimes will suggest caregivers look at their own disability insurance options and whether they might be able to go on a stress leave. “You never want someone to regret not being able to spend that time with [a loved one] because they have to go to work,” Mann says.

Kossowan says one thing he learned as a caregiver is to not be afraid, even of the tough conversations with a cancer patient. “They need to talk about these things and you need to somehow find the right environment to have a heart-to-heart and be supportive,” he says. “Many people don’t have a chance to say goodbye. Somewhere in a situation like that you have to tell them ‘it’s OK to go.’ You find very often that people are waiting for permission that it’s all right to leave.”

It’s the Law

New legislation in Alberta recognizes the need for caregivers, not just cancer patients, to take time off to be with their sick spouse, child, or parent and help with the day-to-day, especially in palliative cases. In May the Alberta government passed Bill 203, which protects the jobs of Albertans who qualify for the federal Compassionate Care Benefit Program. Under the legislation, a family member can take up to eight weeks of compassionate care time within a six-and-a-half month period without fear of job loss.

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