Sounds harsh, doesn’t it? Yet, I think I needed someone to say this to me 20 years ago. Life as a PD CarePartner could have been so much easier if I had been given an idea of what was coming. Each new task, each new setback for him, meant a new reality to be accepted for me. I knew things would change and that I would be asked to do more for him and around the house, I didn’t really fully understand what those changes might mean to my life.  

When he wasn’t safe around hand tools, I took over minor maintenance tasks. When Parkinson symptoms made it unsafe for him to drive, I became the chauffeur. When he couldn’t safely use kitchen utensils, I took over all the cooking. When we figured out showering wasn’t safe, I began helping him with it, not to mention all the other selfcare bits that go with it. When scheduling appointments and talking on the phone was a challenge, I became his private secretary. All of this happened over a number of years and I integrated each activity into my schedule as they came.

My life is nothing like I expected when we married 25 years ago. Retirement has become a new job for me as I am caretaker of our house and caregiver for my husband. I have to work to carve out a few hours of time for those things that I enjoy doing and they can only happen if he is safe and cared for first. Still, I am here and stay because I love this man and will stand by him as long as he needs me. But it has taken a deep and loving commitment to share in this journey. If I had it to do over, I wouldn’t change any of my decisions, it just might have been nice to know what was coming way back then.