I wanted to take some time and reflect on what it is like to be a care partner in the setting of YOPD. The diagnosis of Parkinson's disease came 5 years into our marriage. By then, we had a preschooler, a toddler, and a newborn. We had our sights set on having a large family and creating a life filled with happiness, soccer games, and traveling with our kids all over the world, something we both enjoyed ourselves. We never thought we would have to find ways to do those things amidst a progressive, neurogenerative disease.
The term 'caregiver' was all the buzz when I reached out to find resources and support. I always felt strange reading the caregiver blogs and joining caregiver groups on social media. Clearly, these spouses were literally GIVING CARE, interpreting, speaking on behalf of, and helping with many ADLs (activities of daily living). I was not there yet. I think about when I will be all the time, but right at that moment, I was figuring out how to be a good mom of 3, a supportive wife to someone who just received a depressing diagnosis that would affect basic movements such as walking, and also retain some semblance of who I was as a 36 year old woman with career aspirations and a fervor for life.
I came across the word 'care partner' (actually, two words) and teased out that was who I was. I was a partner in the care of my husband who had Parkinson's disease. I went to as many appointments as I could with him, educated myself, and spoke to friends and family about it. My husband was still (and still is) very independent. He did not depend on my me for bathing, feeding, etc. He was still his own person. The guy that I married. The guy I chose to have children with.
People diagnosed with Parkinson's disease face a myriad of challenges. That is a fact. It should be acknowledged that these challenges do differ, sometimes vastly, between age groups and those in different stages of life. Those diagnosed with PD later in life, at the more typical age of over 65, have often lived through a career, raised a family, and often are experiencing life as grandparents and retirees.
The YOPD set is in the middle of all those processes, living them in real-time. They are getting up in the middle of the night with their infants, chauffeuring and watching their children play soccer early on Saturday mornings, packing lunches, and teaching their kids how to ride a bike. They are hustling at work, running businesses, producing deliverables, and mentoring millennials and Gen-Zers. They come home and help with homework, wrangle toddlers to bed, and work on their relationships with their spouses, some of whom are still in the early years of their marriage. They are cultivating friendships, old and new, trying to find their fellow parent tribe, engage with peers in intellectual conversation or just blowing off steam with college pals. They are an active participant in the care of their aging parents.
As care partners, we witness this and are doing all these things ourselves. The world does not stop when the diagnosis comes. Life does not stand still until you get your bearings. Nope. No mercy. For two years, we essentially shoved the diagnosis aside. I did anyway. I dealt with it by not dealing with it. I was struggling with sleep deprivation, keeping up with 3 small kids, and a family medical issue (not my husband's PD). Thank goodness for my own mom village who filled my cup, picked up a kid now again, and was just a text away.
We were lucky. We are lucky to have a support network. That network has changed over the years with some members coming and going, but I do believe that people are put in your life for a reason and looking at relationships with a self-reflective eye can reduce any toxic resentment or disparaging judgment that may come when said relationships do dissipate.
My role as care partner is only its beginning stages, although I have already learned so much about Parkinson's, my husband, and myself. I look forward to its evolution, knowing how much I will change (hopefully for the better), as we navigate YOPD with each other and our amazing kids.
Peace. Be well.