Bouncing back : a caregiver story
Since it’s Parkinson Awareness Month, we are including this story from Hélène Tousignant, a caregiver to her husband Marc who has this disease.
Since it’s Parkinson Awareness Month, we are including this story from Hélène Tousignant, a caregiver to her husband Marc who has this disease.
A good friend of mine recently told me that he has always been amazed by my ability to bounce back in the face of hardship. “ You've got to be kidding me !” I thought. He told me that just after I had lived through quite a difficult time! My dear husband was wasting away.
We went from one specialist to the next, physiotherapist, nutritionist, speech therapist, chiropractor, neurologist, and exercise and dance as well. He was suffering more, he lost his beautiful smile, which really broke my heart, he was much slower, we were constantly having to adjust every day, and I was getting burnt out.
In the end, I guess it's true that I do have an ability to bounce back. I had ended up extremely anxious, always worrying about him and having difficulty sleeping and turning my brain off; I felt the need to talk to my doctor about it.
My doctor helped me understand that the “journey” with Marc and Parkinson’s disease was a long one and that if I wanted to stay the course, I needed to recharge my batteries and, most importantly, sleep well!
I said okay, and one month later, I landed back on my feet. I took the time to do little things I enjoyed each day: reading, doing puzzles, knitting, putting music on in the house, writing, painting, looking after my plants, buying body creams that smell nice (I have always loved scents, colours, the pleasant things in life and sweet things... oh the calories!), and I started to take note of these little pleasures every day, so I could see my progress in taking care of myself.
Marc and I are lucky to have met a care worker who is a good listener and who helps us realize the extent of our love and the importance of staying in and really enjoying the present moment.
I noticed that our love was a good springboard for rebuilding our life, not like it was before, but with the strengths we have today. I had been able to seek out resources to help Marc, but over time I had lost touch with myself and I was rebelling against what our life was in the process of becoming. Now, I am trying to use my creativity and connections, to review what I was good at before and adapt to what is achievable now, and especially to listen to my emotions.
I decided to continue moving forward on the path in front of me by surrounding myself with respectful and positive people, trusting in life and injecting humour into the love. Some call that resilience.
Hélène Tousignant, caregiver, 2017.
Parkinson’s is the world’s fastest growing neurological disease. The impact of this disease extends further than just the person who has been diagnosed. The condition can be challenging to them, but also to those closest to them who may become their carers. Here are some resources to support you:
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