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Why I Care

#whyicare #caregiving #caregivers #seniorcare

My mother, Edie, passed away in December. As I sit down to write this post, memories of her flood my mind. First and foremost, my mother was generous and kind. She loved me unconditionally and was always there for me throughout my life, and when she was diagnosed with a rare atypical form of Parkinsonism, I knew that I had to be there for her and my father. It was a challenging road at times, but I knew it was a path I had to take.

I cared for her with love and devotion from her initial diagnosis until her final days, and it was an 8 year journey that I am so grateful to have been able to take. I am often asked why I made the decision to care so wholeheartedly for my mother, and I’d like to share my story in the hope that it may help you on your own journey.

Watching Edie’s condition progress was heart-wrenching. Atypical Parkinsonism conditions are progressive neurological disorders causing stiffness, tremors and difficulty with movement, balance and speech. As the disease progressed and my mother’s condition worsened, she became increasingly and ultimately completely reliant on the care of my father, professional caregivers and health practitioners. If I lived nearby, coordinating all the stakeholders she needed would have been challenging.  Living 500 miles away made this an even more daunting  job, both physically and emotionally, but I knew that I was doing what was best for my mother.

Taking care of Edie was not always easy. It required patience, understanding, and a willingness to adapt to her changing needs. There were times when I was exhausted and overwhelmed, but I knew that I had to keep going. My mother needed me, and I was determined to provide her with the best care possible.

Over time, I developed a deep empathy for the people who care for loved ones with chronic illnesses. It is a challenging and often thankless job, but it is also in my view one of the most rewarding things that a person can do. Caring for my mother taught me about compassion, perseverance, and sacrifice.

In the end, my mother passed away peacefully, surrounded by my father, her family and caregivers. Although I miss her dearly, I am grateful for the time that we had together. This difficult but profoundly meaningful experience transformed who I am today and inspired me to build to take better care of Edie, and make a positive impact on the lives of others.

During these last few years of my mom’s life, it helped me to know that I was not alone – I had the support of people who cared. If you are caring for a loved one with a chronic illness, seek support from friends, family, and healthcare professionals, taking care of yourself along the way. And, please share your personal story — it will help you get clear, and will help others feel less alone.

Remember, you are making a positive difference in someone’s life and doing something that will powerfully transform your own life, like it has mine.

Jim Lightsey
Founder & CEO