Caring for the Care Partner - PMD Alliance

My husband, Jay and I have been married 31 years. To say we were both devastated at my Parkinson’s diagnosis would be an understatement. Soon after, I told him if he wanted to leave, I completely understood because this disease could get ugly, and I don’t want to be a burden to him. He said he’s in it for the long haul, no matter what, and will take care of me as needed. I say he’s a glutton for punishment. Putting up with me for 31 years is punishment enough. Mix in one unpredictable disease, well it seems there are better ways he could spend his time. But I’m being facetious. While I hate thinking of what Parkinson’s will do to him, I admit to being eternally grateful for having him by my side on this journey.  

Jay is an introvert and internalizes his emotions so he always appears so even-keeled, calm, and collected. I truly don’t think I’ve ever seen him mad in all the years we’ve been together. I, on the other hand, can be very reactive, emotional, and impatient. He balances me out and can effortlessly make me laugh when that’s the absolute last thing I feel like doing. He’s definitely the yin to my yang. To quote from the film Jerry McGuire, he completes me. Cliché? Yes, but my point is that he makes me a better person, which is certainly no easy feat.  

Jay shared my Parkinson’s diagnosis with his supervisors, but being the introvert that he is, he was not very forthcoming about his feelings over our circumstance. We told our children, a few close friends, and he called his family in Texas to share the news, but he didn’t really open up to anyone in our personal lives either. Soon after, Jay came home from work to tell me that one of his managers stopped him in the hall to ask how I was doing. He said he wasn’t expecting the question or prepared for the manager’s care and concern, and he broke down sobbing. It surprised me because I had accepted Mr. Parkinson as this new interloper in our lives and since Jay hadn’t said too much about it, I assumed he was on the same train I was, full steam ahead. But it reminded me that each of us handles things in very different ways. It taught me that this disease impacts more than just the person with Parkinson’s. I realized I needed to look past myself and check in with him from time to time about how he’s feeling. We talk frequently and openly now about Parkinson’s, sharing our concerns and emotions about the here and now and what may come. Jay accompanies me to appointments. He asks questions and offers suggestions he thinks may be helpful as we navigate new norms with this disease. I reassure him often that I feel good. When I was little, my mom would always rock me while singing Doris Day’s “Que Sera, Sera.” I think Jay and I are both in a better place of acceptance now and that whatever will be, will be. Still… 

I’m a Virginia girl. Jay is a Texan through and through. I don’t think I can recall meeting anyone from another state who has true state pride like a Texan does. We met while working at the Pentagon. He was in the Army and I worked as a DOD civilian. After his enlistment, we stayed in the northern Virginia area. He always thought he’d return to Texas after his time in service, but my family was in Virginia, and I wanted to stay near them. He wanted me to be happy so we settled down and had two sons who are both now married, and now we have one grandson who is the light of our lives. They live close by so we are fortunate to see them often. For years we talked off and on about moving to Texas to be near his family but the timing for a move never panned out. We’ve had a wonderful life in Virginia. I’m comfortable here. I’m happy here. I love Texas though! There hasn’t been a place in that state that we’ve visited over the years that I haven’t liked. But while we’ve talked about moving at one time or another, I don’t know how seriously we entertained the idea of actually relocating. But things have a way of changing. Enter Parkinson’s… 

As my symptoms progress, I want Jay to have a support system, a sort of care partner for the care partner. I want him to have people he can rely on, to talk to, to hang out with, to distress with, to laugh with. Parkinson’s can be all consuming, so I want him to have opportunities to take breaks and catch his breath. Being near his family would afford him these opportunities, so I offered to revisit the idea of moving to Texas, seriously. Timing is everything they say and this whole process with house hunting and home buying could not have been any easier, so I feel it’s meant to be this time around. We found a one-level home, which means no more stairs to contend with, and it’s in a nice, quiet, semi-retired community that will be perfect for us. There’s highly rated healthcare and rehabilitation services in the area, as well as support groups and exercise programs nearby for the Parkinson’s community. And the icing on the cake? Our kids and grandson plan to follow us down so they can remain close by. Where I would normally be feeling stress or anxiety about this type of move, I actually feel very much at peace. I know we’re doing the right thing for all of us, especially for Jay. He couldn’t be more excited, and with that I’m counting it a win over Parkinson’s. 

Leave a Reply