Anticipatory grief was the first step for me. When I learned that my husband had Parkinson’s Disease, I was struck with the fear of what it would mean and grief for what it would take from us. I didn’t really know what was coming, I just knew it was going to be different from what we had planned. That expectation of loss lived with me for several years festering within me, fed by the uncertainty of where this journey would take us.

Then things actually started to change and we were faced with real losses. Granted they were small at first, but they brought with them actual grief for those things we could no longer do or for the things I saw PD taking away from my husband. Every task that he passed on to me was another little loss for him and it hurt to see what was happening to the man I loved.

We became part of a local PD community which was very supportive but with those connections came the opportunity for more grief. I watch my friends struggle as they deal with their challenges and grieve for what this disease is doing to them and to the ones they love. I share in their grief when their loved ones pass, the ultimate loss in this journey.

I don’t often stop to put words to this component of my life because it can be too difficult to consider. When I do take the time, it reminds me of the courage that we all must have to face whether we are the one living with this disease or their CarePartner. While it is true that I grieve for what we have lost, I also recognize those things I have found that keep me going on. I am stronger and much more resilient than I ever expected and those qualities, along with the love we share, will be what sustains me on the difficult journey ahead.