Caring for Helen. A Courageous Woman Living with Heart Failure

Caring for Helen. A Courageous Woman Living with Heart Failure

By Dina, Caregiver

My mom’s life changed for the better when she immigrated to Canada in the late 1960s. Yet some things became more complex as she had always had a heart condition but didn’t know it. Shortly after her pregnancy with me, her journey to fix her broken heart began when her heart condition was finally diagnosed. My life as a caregiver began then, at a very young age. I learned as early as a child of six or seven how important it was, and still is, to ask questions about my mom’s heart disease. “What can I do? What is going on with her heart? What will you do for her? Is she going to be better or not?”

I asked these questions at age 10 when I started going to her cardiologist appointments. They were scheduled after school so I could attend. I continue to ask today, 40 years later. Fortunately, with a great health care team, they answer questions, give guidance and a lot of the time, they give you hope.

The more questions you ask as a caregiver, the better it is for everyone. Your loved one benefits, and the doctors appreciate your input. Most of the time, it is the caregiver speaking for the patient. In my case, I am my mother’s voice. I am her interpreter and able to articulate to the health care team what she is unable to communicate. Sometimes I need to intervene as given her upbringing and culture, my mom does not want to say she is unwell and is uncomfortable causing any “trouble” due to her health condition. I see she needs care and attention, and I intervene to advocate for her and to her.

I remember a doctor thanking me for caring for my mom. He reminded me of the importance of being our brothers’ and sisters’ keepers. He followed up by asking me if I looked after myself. He was actually interested in my health because he understood the challenges and emotions involved in being a caregiver. I couldn’t believe this incredible act of kindness.

Frankly, for a long period of time I had forgotten to do that. Her doctor recognized my situation and expressed the importance of caregivers looking after themselves. He shared the analogy of putting on the oxygen mask first in airplane then going to help the others. I knew then that if I didn’t start looking after me that it would become “bad” for everyone. I learned that it wasn’t selfish to look after yourself while caring for an ill person. There is a lot of emotion involved in caring for a heart failure patient. It is not a 9 to 5 job. It is always on your mind. Things change and you must change the course of care accordingly.

Don’t be afraid to ask for help. Don’t be afraid to say that you are afraid. Don’t be afraid to ask questions. A great healthcare team will always listen, always answer, always care. A great caregiver will always ask questions and ask questions and ask questions and listen to the answers.

My mother has been living with heart failure for a very very long time. The journey can be rough. There is no cure for heart failure. This is a true but sad statement. What there is, is hope. There are new treatments, medications, tools to help a heart failure patient live a good life. I am witness to that. There are also resources for caregivers to help with their journey of caring.

As hard as it may be to care for someone living with heart failure, it is just as rewarding when my mother turns to me as says a simple “thank you for helping me.” That makes it all worthwhile.