We’ve been on our journey with Parkinson’s for almost 20 years. I am very grateful for the fact that my husband is still with me and doing well, but didn’t expect it to last this long. Just writing these words makes me feel guilty for even having the thought. It’s a confusing and difficult mindset. I want him to be with me and I generally enjoy our time together, I just wouldn’t wish this extended journey with Parkinson’s on anyone.

Had I known early on what was coming, I would have retired sooner and we would have travelled more. Had I realized how long the road would be, I would have insisted that we find and hold on to outside interests so that Parkinson’s would not have such a stranglehold on our lives now. Had I understood the ramifications of long term chronic illness on the caregiver, I would have hired help sooner so that I could have had more time as his wife and less as his caregiver when it was still possible.

Pacing myself for long distance when all my life I’ve been a sprinter is not an easy task. I have adjusted and accepted and adjusted again. I have grieved so many little losses and will continue doing so. I have also celebrated little victories when they happened, they just didn’t happen often enough. Most of all I have learned that if I am going to make it through another day, let alone another year, I must allow myself to be human. I must accept and respect my limits and provide care for him that is realistic for me. It’s the best way to take care of both of us.