Carolyn Morton, 74, has seen her husband Dale, 76, cope quite well during his 11-year journey with IPF that, fortunately for them both, has progressed very slowly. She sees her main caregiver role as a morale booster, keeping Dale’s spirits up and giving him a pep talk now and then.
The day we spoke, Dale was out on their property in Hammond Hills, Nova Scotia, just outside Halifax, collecting sap for maple syrup from the 17 trees he had tapped. He needs oxygen only for exertion – when he’s walking or exercising. One of the couple’s two sons, who lives with them, helps Carolyn with shovelling snow, but Dale has yet to relinquish his snow blower.
“I think it’s important for him to keep doing what he is able to do. The stairs are difficult, so we’ll help him bring firewood upstairs. And he’s always been helpful around the house and with child care, so now we enjoy our five grandchildren together.” These days, Dale makes jam and together they make fruitcakes. “It’s all about finding purpose and continuing to feel useful.”
Carolyn goes with him to his medical appointments, making note of any treatment changes or new instructions. It’s hard for one person to remember everything, she says. Dale takes an anti-fibrotic medication and his respirologist is pleased with his status. At his last appointment, the respirologist noticed Dale was losing weight, so they stayed at the clinic to meet with a dietitian, who recommended more protein in his diet.
Back in 2012, Dale was very reluctant to tell his eight siblings or his three children that he had been diagnosed with IPF, since Dale’s family had previously lost a brother to the disease. “He didn’t want them to worry,” says Carolyn. But, once he told them, and they got past the initial fear, they rallied around him and his family. And one of Dale’s sisters is one of Carolyn’s closest friends.
The extended family keeps Carolyn and Dale feeling young, positive, and engaged. As do members of their community. The Mortons have continued to attend church virtually since the pandemic and Carolyn stays in touch with the church’s women’s group. Their minister has been wonderful, she says. Their neighbours are available if they need help at home and Dale and his son watch sports, especially hockey, together.
Dale and Carolyn have also attended in person, and now virtually, the CPFF Halifax Support Group and Carolyn has joined the Caregivers Support Group, which meets virtually every two weeks. “I find the facilitators very supportive. I would recommend it to other PF caregivers.”
Carolyn advises other caregivers to be as positive and upbeat as possible for the patient and to try not to sit and brood too much, but keep as active and engaged as you can. “Do while you can still do,” she says.