father and daughter on the beach. Photo in old image style.

When someone you love has heart failure

As her father’s health declined, Sue MacDonald and her family found caring for him became a full-time job.

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Sue MacDonald

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.”

 

 

 

3 Responses

  1. Shauna

    Thank-you for sharing your story Sue. My husband and I are currently caring for my dad, age 70, who is in advanced stages of heart failure. We both work full time and tag team getting him to all of his appointments. We have been unable to get him any help at home during the day when we are at work ~ so every afternoon we take a deep breath before we go inside the house as we just don’t know what we will find inside. Some days are okay, but most are hard and very sad. We have educated ourselves to all the symptoms, we know when he is decompensating, we know when a hospital visit is needed, we understand what his lab results are indicating, we advocate for him and help him explain what is going on for him at his many appointments. And we know he is slowly dying and there has been no support for us around this issue at all. My dad knows he’s not going to get better and everything is getting harder. He gets grumpy – who can blame him ~ but we wear that burden and when I get frustrated and upset, I am left feeling guilty afterwards because I see my once strong capable dad, struggling to just breath as he sits and stares at the floor. We as caregivers could definitely use support – even if its just to share stories of the burden. and my dad could use support to, especially regarding end of life care.

    1. Sharon Hollingsworth

      Hi Shauna,
      Thank you for taking the time to share your experience with our readers. Your Dad is so fortunate to have you and your husband as his caregivers and advocates but we recognize that it is a very difficult road that all of your are currently traveling. The Heart and Stroke Foundation is starting to work with individuals and groups to make sure we develop supports and programs that are needed, practical, and really make a difference. If you and your husband are interested in learning more about our Community of Survivors you can click on this link for information and to register http://bit.ly/1LqrsL6. Thanks again for reaching out, Shauna. Sending along warm wishes to you and your family. Sincerely, Sharon at the Heart and Stroke Foundation

  2. Kim

    Thank You for sharing your story!! I know very well what you went through as I am going through this myself as my husband who was diagnosis almost 4 years ago at the age of 42 years old now 46 years old and was not given a great diagnosis and receive a defibrillator and has CHF on top of it!! So dealing with it day by day is the only way to go about!! Not easy but can relate to what you are saying!! You must know that you and your family did the best you could for him!! Bless your heart!!

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