Be alert for early signs, warns caregiver Bill

Looking back now, Bill Bradshaw, 76, recalls the early signs of his wife Jackie’s pulmonary fibrosis.

Bill and Jackie
Bill and Jackie in Australia in 2019, a year after her diagnosis of idiopathic pulmonary fibrosis.

“She’d had a knee replacement and was understandably having trouble walking up hills and dealing with the stairs in our three-storey home. But, it wasn’t just muscle or joint pain. She was out of breath and would have to stop and rest,” he says.

The couple moved to a bungalow near a golf course, in Briar Hills, near Alliston, Ontario. Jackie was still having trouble breathing, while walking the dog, golfing, or cycling. One day, on her way back from walking the dog, she was very short of breath and stopped at a neighbours’ place, who said she was not looking well and got her some water and had her rest a bit. Back at home, Jackie was still not feeling right and took herself to the hospital.

After a round of tests in the emergency department, they got some news. She had a hiatal hernia, which was treatable, and she had pulmonary fibrosis. They were told to have their GP refer them to a respirologist.

It was 2018 when Jackie had her first appointment with a respirologist who confirmed a diagnosis of IPF (idiopathic pulmonary fibrosis). Bill was with her.

“That’s when I first learned that blue nails and lips indicate a lack of oxygen and that the doctor hears a crackle noise, like Velcro pulling apart, when they listen to lungs with PF,” says Bill.

At this time, the couple were also contemplating a move to Winnipeg, where they had raised their two sons Matthew and Jeff, and where their grandson now lived with his mother. Matthew is a physician in Saskatoon. Jeff lives in Sydney, Australia. The Ontario respirologist referred them to a respirologist in Winnipeg and transferred Jackie’s file there.

They settled into a condo in Winnipeg in 2019 and for a couple of years Jackie’s condition was fairly stable. They travelled to Australia to visit Jeff, and made it back to Canada just before the pandemic shut down the world.

In those early years, my caregiving was not too involved, says Bill. He took Jackie to her medical appointments and helped with her medication and around the house. They were socializing (when COVID allowed) and getting out and about.

In March 2021, Jackie started taking nintedanib, but could not cope with the side effects. She switched to pirfenidone, but fared no better. Her quality of life began to deteriorate. She eventually needed oxygen therapy, using a concentrator at home and a portable one when out. She got an electric scooter.

Bill recalls some of the misadventures of Jackie and her scooter. “The controls were by hand, so if she let go of them, she would stop abruptly and people would bump into the back of the scooter. She’d run into things and sometimes, she’d run over my toes,” he chuckles.

Jackie, right, celebrates her birthday on November 20, 2022, with her sister Louise.
Jackie, right, celebrates her birthday on November 20, 2022, with her sister Louise.

As her disease progressed, Bill’s care responsibilities increased. Jackie did not want to be in a care home, she wanted to stay at home. She wanted to do as much for herself as she could, he says. And people came to visit; her sister and two nieces came to stay a week at a time to spend time with her. She was visited by both her sons frequently; Matthew from Saskatoon and Jeff from Australia. Jeff was able to work remotely when visiting.

Jackie at wedding with 2 sons.
Jackie with her sons Jeff, right, and Matthew, left at Jeff’s wedding in December, 2022.

“Last fall, we were not sure if she would see her 76th birthday in November,” says Bill. “Jeff came from Australia to Winnipeg to get married on December 30, 2022, so we could be there. Jackie made it to the restaurant ceremony and reception, but it took a lot out of her.”

During her last six months, Bill sent out an email every two weeks, called “Jackie’s Journey,” to a long list of Jackie’s friends and family members to keep them up to date on her condition and to let them know how much she appreciated their calls and visits.

Jackie’s birthday memorial for November 20, 2023.

Jackie passed away on January 29, 2023. She was 76 years old. “At the end of the day, she knew that she was loved,” says Bill. In July the family held a celebration of Jackie’s life at the Pearle Hotel and Spa in Burlington, Ontario, in a reception room overlooking Lake Ontario.

“Jackie loved the water and it was a spectacular summer day. I think she would have loved it,” says Bill

These days, Bill is a bit lonely. He keeps busy mentally with some contract work, and keeps fit by walking his dog, swimming, cycling and playing golf, when the Winnipeg weather permits. Jackie’s ashes are with him, and on their wedding anniversary and her birthday, he celebrates her as he did when she was alive, with a single rose and a glass of Beaujolais Nouveau, which is released each November, and a family tradition started by Jackie’s father. But now the rose is set by her photo.

“People ask me how I did it, caring for Jackie at home, but you find the strength and ramp up to do what needs to be done for those you love,” he says. “While caring for Jackie, I learned that I was stronger than I thought.”

Asked what he wants others to know about PF, he urges people to get checked out if they are getting short of breath. “Don’t just assume it’s because you’re overweight, or out of shape. It only takes a moment for your doctor to listen to your lungs and get the diagnosis process started. And once diagnosed, spend as much time as possible with your loved one because you don’t know when the last day will come.”

Editor’s note: Check out the section on the CPFF website about the signs and symptoms of pulmonary fibrosis.