Sue Macdonald likes to remember the good days with her father, Greg. She’d rather not think about the last few years of his life, before he died at age 76 from heart failure and related complications.
Greg had type 1 diabetes plus an accumulation of other health problems, including a form of dementia that might have been triggered by mini-strokes. He underwent heart valve surgery in his 60s as well as a triple bypass, then required several more operations when infection set in. Like many people with heart disease, he was eventually diagnosed with heart failure.
The family – Sue, her mother and sister – were drained from the effort of looking after him at home, even with regular visits from a personal support worker.
“It was a full-time job taking care of my dad, dealing with the sheer number of appointments and trying to coordinate care,” Sue says. Plus he was increasingly unhappy. “When you know things are not getting better, it can be hard to stay positive.”
Greg’s family doctor was doing his best, Sue says. “But there were lots of specialists involved. And specialists are very focused on their own areas – whether it’s endocrinology or cardiology. It was a different system for each.”
Sue worried about her mother, who was isolated at home with her husband and lacked the strength to help him with tasks like bathing. “He fell quite a lot near the end – she had to call 911. There were lots of ambulance calls to help him get up.”
Greg was in and out of hospital. He wanted to stay at home but eventually his complex needs made it impossible. “As soon as he got to the nursing home he was in a wheelchair – strapped in,” Sue says. “That was awful. He went downhill very quickly.”
Families under stress
Greg was one of the estimated 600,000 Canadians who have heart failure. Heart failure develops after the heart becomes damaged or weakened by heart disease. It means that the heart muscle is not pumping blood as well as it should, resulting in the body not getting the amount of blood, oxygen, and nutrients it needs. It’s a long-term chronic condition that usually gets worse over time.
As Sue learned, the burden of heart failure spreads far beyond the patient. Caring for a person you love and trying to get the right help for their changing needs can stress families to the breaking point.
After moving Greg to the nursing home, the family was on edge, feeling sad they had gone against his wishes. “He was antagonistic and rightly so,” Sue says. Dealing with this personality shift — from the calm, diplomatic father she remembered – was one of the hardest parts.
“It is scary when it is something happening to someone who had been strong and there for you.”
The loss of dignity her dad endured also makes Sue sad. “He wanted as normal a life as possible life but it got harder and harder.”