Asked what advice she’d give to other caregivers living with people with pulmonary fibrosis (PF), Beth Garbutt, 61, has a few tips: “Join a support group. Learn more. Ask questions. And, don’t Google PF. Instead, visit credible websites like www.cpff.ca for accurate information.”
Beth’s husband Rob Garbutt, now 63, was diagnosed in 2011 with IPF and for about eight years he was able to continue with most of his activities, until in 2019, he was hit really hard with an exacerbation and hospitalized for a week. His condition has worsened since that time and he has now been waiting for more than a year for a lung transplant. The couple live in Winnipeg and transplant surgery will take place in Edmonton.
Beth’s assistance has been vital a couple of times – after Rob got out of hospital and in preparing for a lung transplant. “After the exacerbation, there were so many medications and he was so sick,” says Beth, who still works full-time. “It was very stressful.” She helped him with organizing his medications; colour-coding the pill bottles and setting up a medication journal. There was also plenty of paperwork for insurance purposes and once he quit working, more paperwork for employment insurance and other benefits too. She handled most of it for him.
Once he was stable again, Rob was able to care for himself and drive to appointments himself. He keeps as active as he can, taking along his oxygen when he rides his recumbent bicycle with his dog Maggie and golfing with a cart. These days others need to do some of the more strenuous household chores he used to do, like cutting the grass at the house and the cottage.
“But, he can help with the vacuuming – a bit at time,” says Beth, “and helps with some of the other housework. It’s a team effort.”
The other time Beth’s support was critical was in making the decision to proceed with a lung transplant and going through the “medical boot camp” assessment process. “I went with Rob to his specialist appointments, to listen and process the information. It can be overwhelming. Together, we sifted through the pros and cons and made the decision to proceed with the transplant assessment.”
This process involves an exhaustive series of medical appointments to assess his physical condition. “There were so many calls with doctors and nurses and appointments to schedule and then so many tests. Sometimes three, and once even six, in one day.”
Since it’s been more than a year since his first transplant assessment, with no transplant surgery, Rob and Beth will go through the medical boot camp once again, in case there have been any changes in his physical condition or in their situation, that would impact his chances of a successful outcome.
In between and during these times of “crisis,” Beth most importantly provides emotional support. In some ways, she thinks the COVID-19 pandemic has been helpful. Beth has been able to work from home for 18 months and public health restrictions made it easier to avoid exposure to all viruses as they wait for the call from the transplant centre in Edmonton.
It’s been mostly just the two of them during the pandemic. Friends have checked in and helped out as needed. Their son Andrew works in Vancouver and their daughter Maegen recently had their first grandchild, a boy.
Beth is back to work in the office some days now and her co-workers have been very supportive, wearing a mask around her and inquiring if Rob has received that important call from Edmonton yet. PF altered their future plans with Rob retiring five years earlier than planned and Beth now planning to keep working longer than anticipated.
As a caregiver, Beth knows it’s important to take care of her own physical and mental health. She’ll often spend Saturday and Sunday mornings painting watercolours. And she exercises each morning on the recumbent bike at home. Both she and Rob are involved with the CPFF Winnipeg Support Group and have found it especially helpful in supporting one another through COVID-19. Rob has shared his story in a recent CPFF documentary and as a spokesperson for CPFF advocacy and awareness campaigns.
An offshoot of the group is just for caregivers and meets one evening a month. “It helps to realize that there are other people going through a similar journey, although everyone’s journey is different. We ask and answer questions and cry and laugh together. And we understand one another. It’s hard for caregivers when it’s all about the person with the disease all the time.”
Throughout her journey as a PF caregiver, Beth has learned about the power of positive thinking. “I just don’t let myself go to that dark place,” she says. “I focus on the life-affirming things and activities in my life, like my new grandson and making a new bucket list.”
Rob and Beth have made plans for the future after the transplant. “We’re going to travel out west and go downhill skiing again.”
Editor’s Note: April 5, 2022 was National Caregiver Day, recognizing caring Canadians. For more information and resources for caregivers, visit Carers Canada.