I was fortunate that I never knew my husband before he had Parkinson’s. Of course, I wished that I had been able to spend time with him when he was his original self. I never got to go boating with him, travel, or raise kids, or live the day-to-day life of regular old married folks. Nor were we able to establish our own traditions and routines. Instead, I quickly came to understand that my marriage would always need me to focus on a moving target.
As his cognitive abilities waned, and his emotional expressiveness dwindled to nothing, I learned to always be on my toes, ready to shift gears. Like the improvisational actors on the TV show Whose Line Is It Anyway? I had to respond to every situation with a “yes, and.”
Saying “yes” as I accepted what the day presented, without having the lifetime background to compare this moment with how things had “always been.” Saying “and” to take in and work with the reality, resources, and responsibilities we faced at that moment.
In this way, I was luckier than if PD had intruded into a long-term partnership. I was able to keep moving with him, able to maintain a connection with him. Without having shared a long history, a long way of life to try to maintain, I was free to say “yes, and” to each day, and to each moment sometimes. I never knew him as he had been, and who he was, how he was, kept changing under the pressure of his ongoing Parkinson’s.
I think that one of the hardest things for many PD partners is to lose so much of their familiar daily ways of being, as their partners experience the cognitive shifts and diminishing emotional abilities that are so common in PD. The very things that help to cement your connection with your partner seem to lose their familiarity and appeal to them when your Partner’s PD begins to really gallop along.
You try to hold on to the marriage or partnership you’ve always known, the rituals and routines, the accustomed activities, and responsibilities. However, what most of us experience is that the PWP’s brain changes will make them less able to participate in the things that you once valued together. And I think that caregivers can find themselves more unhappy and in a bigger struggle if they cling too tightly to the way things have always been.
There’s grief in PD caregiving. You start to lose things in your day-to-day life and can feel robbed, while your partner seems almost indifferent to your struggle. So, there you are, wanting one more trip, one more week at the beach, one more long visit to the grandchildren. And your hope is that your partner will cherish these familiar routines as much as you do. We can end up being disappointed, and even irritated that our partners are not able to join us in holding on to those things.
Now let me be clear, you are totally entitled to want these things and to put in the work to make them happen. But I believe that you’ll enjoy these old familiar things more if you approach them in a new way.
By the time PD is diagnosed, things have already started to change. The day is likely to come when you’ll look up and see that your old familiar relationship is gone. That’s an impossibly painful loss. You realize that you are not likely to regain the relationship you knew. However, something else can emerge – if you can take the improviser’s “yes, and…” as your guide. Accepting the situation, the facts as they are today, in this day, this moment, and letting in this new reality (a reality that will shift as well) can be the starting point for a new, successful partnership.
There is a great Ted Talk about using Yes, and… in life as a caregiver.
You can find it here.
Terri Pease, PhD is a highly experienced professional in the social services and healthcare industries, and the author of Love, Dignity, and Parkinson’s: from Care Partner to Caregiver.
When Terri married her husband, Peter who had Parkinson’s Disease, she brought her wealth of knowledge and experience to bear on caring for him. That professional experience and what she learned through caregiving have informed her approach to caregiving, and to supporting Parkinson’s caregivers to find self-care that is real, practical, and possible.
Terri posts on myParkinsons Forum as VioletV.
