Family moves closer together and becomes a care team

Brian Hurding, 74, is blessed to be surrounded by women, two adult daughters Lorraine and Suzanne and a granddaughter, 14, who have all banded together to help him care for his wife Anne, 72, who has IPF.

Members of the Hurding family gather for a photo just before Anne returns to the hospital on March 24. From right to left: Brian, Lorraine, Anne (with dog Lilly on her lap) and Suzanne. Camera-shy dog on left is Bear and Suzanne’s dog Sam is front-right.
Members of the Hurding family gather for a photo just before Anne returns to the hospital on March 24. From right to left: Brian, Lorraine, Anne (with dog Lilly on her lap) and Suzanne. Camera-shy dog on left is Bear and Suzanne’s dog Sam is front-right.

Not long after her diagnosis in 2019, the couple moved from a multi-level townhouse in Oakville to a raised bungalow, where they live on the main floor. Lorraine and her 14-year-old daughter moved with them and live on the lower level. Suzanne moved from the east end of Toronto into her parent’s former home in Oakville, west of Toronto and much closer to Burlington. It’s also where she grew up.

Anne recently spent three weeks in hospital with lung and heart issues and is now home in Burlington, Ontario, awaiting a lung transplant at Toronto General Hospital. She is now only able to walk about five minutes, with a walker, and is not able to do much for herself. She is on constant oxygen therapy to keep her levels up.

The aggressive progression of her disease has been difficult for everyone. For Anne, it has been incredibly frustrating. “She was very independent and used to taking care of others,” says Brian, “not being cared for.” Over time, the family dynamics and relationships have changed.

Brian admits that as an engineer and business leader, he was “never very domesticated.” He is now multi-skilled around the house, and has learned to cook and do the housework. Lorraine makes dinner most nights for the family, with Suzanne coming by a couple of times a week to cook and spend time with her mother and other family members.

Suzanne seems to be the person the family relies on to soothe her mother and provide emotional support. “I try to keep her spirits up. She’s a feisty Irish woman, but things are very scary at this point.” Suzanne, who works in the medical field, manages Anne’s medical process and goes to medical appointments with her parents.

Brian changed oxygen suppliers, after having difficulties with Anne’s first provider. Dealing with oxygen has been a “heavy learning experience, even for me, an engineer. Now we have all the supply and service we need.” When they were still going to their cottage, they were even able to get what they needed there.

They are now monitoring Anne’s oxygen levels vigilantly. “And it was at the CPFF Caregiver Support Group that I learned that a cold hand can affect the reading of a pulse oximeter. Anne also has an Apple watch, which is helpful, except it is not able to read her oxygen level when it is very low,” says Brian. “We are managing. We have an emergency plan and we are hoping for the transplant soon.”

Brian takes a break from caregiving four times a day, when he walks the two, family dogs, as well as time to himself when his daughters or granddaughter visit with Anne. Suzanne also has a dog, which she finds comforting. “Who doesn’t feel better just being with a dog. Even scientific studies have proven the health benefits of pets.”

At this point in Anne’s journey, Brian has not been able to socialize much, but friends do keep in touch. And, he finds the CPFF Caregiver Support Group very helpful. “Not only do I learn tips, but I don’t feel as alone. I can come with my questions for the group and get some answers and we talk about our challenges and successes.” Suzanne also attends the sessions, held virtually every two weeks, and agrees with her father about the benefits of the attending the sessions.

Brian recommends PF caregivers join the group. “And recognize that the whole process is a long journey, with so many fences to jump, that it can be exhausting.”

Suzanne, 43, has been very pro-active in maintaining her mental health during this journey. “I have a strong support system of good friends in Oakville because I grew up here.” She also sees a councillor to help her deal with any issues. “I journal, practice yoga and mindfulness, and like to cook and bake.”

Suzanne also credits the family’s Irish humour as helping them all cope. For instance, when she got her dog Sam, she messaged her family that she had met a man and he was moving in with her the next day. They were on the phone to her right away. “I sent them a photo of the puppy and we all had a good laugh,” she chuckles.

On advice for other caregivers, Suzanne encourages people to have the “confidence to ask for what you need,” from family, friends and healthcare professionals. “People want to help. It feels good to help others. When someone asks what they can do for you, tell them. Have them come over and spend an hour with you; or spend some time with your loved one, while you go out.”

She also wants caregivers to be kind to themselves and look after themselves. “No one is perfect and this journey is a marathon, not a sprint, so no one expects you to be perfect. Just do the best you can each day.”

“Slow down and relish these moments you have with your loved one. Try to enjoy them and stay present for them and for yourself, hour by hour and day by day.”