Susan, caring for her mother and husband

I am a caregiver, it’s what I’m good at, and what I love. However, in my professional life, I care for plants and gardens as a passionate horticulturist and have done this for over 30 years. I am like a local celebrity in my neighbourhood, known as the Tree Lady and people always come up to me and ask me about their plants.

My caregiving experience began with taking care of my father, then my mother, and now, my husband, who was diagnosed with Parkinson’s disease 5 years ago. Parkinson’s is a progressive disease, it has mental and physical challenges. There are a lot of drugs that help with daily living, but the prognosis is not good, usually people die within 10 years, and usually not from the disease but with the disease – it causes many complications. As a caregiver, I schedule meetings, make meals, help dress my loved one, do the driving, and I also motivate, and I entertain – whatever it takes.

That brings me to COVID-19. The hardest thing for a Parkinson’s patients is losing their ability to engage and to speak. The worst thing you can do is cancel all of their programs, all of their functions and do everything on WebEx – that isn’t real engagement. As his coach, his mentor and his wife, I am in charge of motivation. We do our walks, stretches, jigsaw puzzles – having our daily routine has been lifesaving and has helped us stay active and positive.

Caregiving taught me the importance of taking breaks. I look forward to my weekly walks with a strong and supportive group of women that I call my Tribe. We have helped each other over the years to get through everything, from drug overdoses, divorce and illness – the good times and the bad times bring us together. I am also blessed with a great family, neighbours and a community that my husband and I can rely on.

Watching my mother transform from a vibrant and happy individual to one that was extremely sick and frail during the Fall of 2010 was my most difficult experience as a caregiver. There was nothing I could do, so much time was wasted, so much misinformation, misdiagnosis and then death. I was exhausted emotionally and physically because navigating the healthcare system during this vulnerable time was confusing and overwhelming. In 2016, I was introduced to the Patient Family Advisory Program. My mom always said you can be bitter or get better. So, I decided to share my experiences and better the healthcare system for patients and their families, and became a patient family advisor. Having been on the receiving end of care in the hospital, with my mother and then my husband, I had a different perspective than clinicians. It is very rewarding to effect real change and ease the hospital experience a little bit more for patients and their families.

Finally, if I can leave one word of advice, it is that you are not alone. There is a great system out there, so reach out. We can’t help everyone, but everyone can help someone.

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