What should society/the loved ones/caregivers/do to make life easier for a PwP?
Be there to support their loved ones. It takes sacrifice, and the caregiver will likely feel as though they are not just losing a loved one but also controlling at times of their own lives. I lost work and time with my family but gave it all up to be there for my mother, and I would do it again. The worst part was that my mother’s health declined considerably daily, affecting me mentally, physically, and emotionally.
What advice or suggestions would you give to other caregivers who are supporting individuals with Parkinson’s disease?
Reach out for help, and look to others for support. We are all a team and family in this fight. I put together many resources at www.togetherforsharon.com. I found many valuable services I wish I had known about when caring for my mother.
What are the most challenging aspects of caregiving for someone with Parkinson’s disease?
The emotional, physical, and financial portions were difficult. I was spending $12,000 just for 24/7 nurses to assist my mother. Her final year of life was the worst for her and us all. I advocate 24/7 now because I never want other families to go through what we have. We need a cure now!
How do you manage and cope with the emotional and physical demands of caregiving?
I tried fitness and family time, but honestly, I was there 24/7 for Mom, so when I tried to return to my life, she would call, or an emergency would occur, and I rushed over. She had Parkinson’s for over 15 years. 14 years was bearable, and she was still independent, driving and living alone. We do not understand what occurred in 1999-2000 as she deteriorated in health rapidly, and no one could figure out why the disease just excelled that year.
How do you provide emotional support and encouragement to the Parkinson’s patient while also taking care of your well-being?
Lean on family, and friends, and remember the other 40-plus years your parents sacrificed everything for you. My mother raised me mostly as a single mom and gave up her own life to make sure I had opportunities to have a great life. It was my turn to do the same for her. I swore I would try everything and anything to help her so that I would never regret missing some way to help her. Sadly, we tried 15 doctors, medicines, caretakers, therapy, and anything and everything as of today I could dream of. Nothing worked. I am still haunted every day that we could have had a cure and she would still be sitting next to me, laughing, and telling stories of the old days. She also loved playing with her 3 grandchildren on Sundays, blowing bubbles, and eating as a family. Those are the times I miss the most.
