Does your spouse ever get on your nerves? Can you tell when you get on theirs? Is it possible to preserve a loving and open relationship between caregivers and their charges with Parkinson Disease, considering the difficulties involved in dealing day-to-day with a slowly-progressive disease? In doing research for the book “Notes from Movers & Shakers With Parkinson”, we observed that while there was helpful information available focused on physical and logistical problems, there was little discussion in Parkinson Disease (PD) forums about the effect that changing roles has on the relationship between spouse and patient, from their own perspectives.
Those caregivers (who represent a clear majority) who are partners with the PDers in their care will see their relationships change. This should be no surprise, since the change in roles is often dramatic. The result is often very difficult to cope with. How can we keep communications open and stress levels manageable?
I was diagnosed with PD more than 10 years ago. My first reaction was to get home to my husband, Dale. We began dating in college and our relationship had endured over the years, and it was natural to turn to him first with this life-changing news. Although we were frightened by the prospect of what a future with Parkinson would mean, we tried to be optimistic. And, after some trial and error, medication seemed to control most of the symptoms. We talked about our fears, our priorities, and made some plans, including a short “bucket list”. Since I was not able to function at the high levels of stress that were part and parcel of my job in a major financial institution, I left the corporate world and worked on special projects, mostly editing, including my husband’s books – he’s an author.
Physical changes occurred slowly; I fell a couple of times while jogging, slipped on the ice and broke my nose; I realized that I had lost depth perception. This made navigating stairs, curbs, etc., very tricky. My husband became a human GPS, as we walked along –“Watch the curb on the right”, “There’s a step-down right here”, “Hold on to the railing”. He continued to be helpful around the house.
Two other pertinent factors to consider: I participate in a rigorous exercise program, which I believe has been instrumental in slowing the progress of the disease. And, I am taking medication that can influence behavior. It’s important to remember that Parkinson’s is described in some places, as a movement and behavior disorder. Although I do not exhibit blatantly compulsive behavior, I notice that there are some activities that I cannot leave until completed. I joke about having “OCD” (Obsessive Compulsive Disorder). And I am much more easily distracted; periodically I seem to have lost the single-mindedness of purpose that I used to have.
All of this brings us to the effect PD is having on my relationship with my spouse/caregiver. As Dale began to understand where the shortcomings were in my daily routine, i.e., difficulty getting most things done on time, moving from one project to another without completing either… he developed ways to keep me on time. (Reminders an hour and half-hour before we’re to depart, staying “on my case” when he sees me leave the laundry without filling the washing machine to do something else). At first I took umbrage at his “telling me what to do” and acting like a parent. And he took umbrage at my “not taking his help and continuing to be disorganized, late, etc.” We were both angry at each other’s stubborn stance. Each of us saw the other as insensitive and unappreciative. Once anger set in, there was a real potential for a downward spiral.
That famous line from the movie “Hud”, “What we got here is a failure to communicate”, is at the base of this problem. We needed to sit and talk and realize that each of us needed to know that the other was in fact doing his or her best to resolve issues, and that they were not trying to exert control over the other. And, it may be difficult to understand that what seems like an easy thing to do, like “pay attention”, takes much more effort and concentration than it used to. And, that we might have to adjust our behavior, and to give up some of that “control” in order to enhance the day-to-day functionality of our lives.
As Dale pointed out, there is also a real need for both of us to “let go” of some things. It may not be appropriate for us to try to be in charge of all that was in our span of control. It may be time to reprioritize, or to stop doing certain things! And closely related to “letting go”, is accepting what is the new reality. The only way that we can move forward with a fresh outlook, is to assess these issues and determine what we can let go of, and what our new reality is.
We are determined to continue to communicate with each other about these sensitivities. I am convinced that if we can stay in touch with each other’s feelings and needs, not only will it help our daily lives, it will enable us to stay as healthy and as happy as we possibly can. We’ll be able to get past coping, and move forward to enjoy life.
Chris Ludwig, worked in a variety of capacities, before writing “Notes from Movers & Shakers with Parkinson”; she was a tax-preparer, a TV “Weather Girl”, and before retirement, a Vice President of technology for a major financial institution. She was diagnosed with PD more than 10 years ago. She’s an avid exercise practitioner, a novice tap-dancer, and believes strongly that “Exercise is medicine!” Chris now lives and shakes in Florida and Cape Cod with her husband Dale, where she continues to appreciate every day with joy and enthusiasm.
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