“Counter Punch” Chapter 7

Chapter 7:

The Marital Duct Tape Frays


“If you had behaved like this when I met you, I never would have married you,” I shrieked at Gil.


Shrieking is not my style. Nor is resistance to change. But Gil’s adjustment to PD had me on the ropes, to borrow one of his boxing metaphors. Our marriage was coming apart. The duct-tape patches were fraying.


Over 38 years of marriage we had successfully managed, together, several lifetimes of disruptive change. We had evolved together.


Our challenges had been supersized: his messy divorce and two pre-teens living with us briefly just after our 1-year wedding anniversary; eight cycles of in vitro fertilization to get pregnant; the adoption of two incredibly talented boys, each challenging in their own right; a parent with Alzheimer’s living with us several years while our boys were young (about 3 and 7); the deaths of all four parents; job changes and moves; retirement and second part-time careers; full-time career to freelance career to stay-at-home-mom to PTA officer/Cub and Boy Scout leader/sports team mom to empty nester.

Our marriage could weather anything, I proudly thought.


I was SO wrong.


At least, not without significant outside help.


In a soul-baring conversation 2 1/2 years after diagnosis, Gil and I realized our marriage was more patches than a sturdy whole. It was a good thing that duct tape had been reallystrong.


The additional strain of PD was wearing the marriage patches of compromise conspicuously thin, although we both considered them absolutely appropriate at the time.


We were OK on nuts-and-bolts decisions, such as how we wanted to arrange our legal affairs. We had laid things out with each other and an estate attorney years ago, knowing that each of us will die at some point. The minor tweaking and updating, given the unpredictability of PD, had been going easily.


Talking about what might lie ahead, we agreed on how to begin downsizing and where our next home should be. We educated ourselves on the various levels of care options – not knowing what might be needed when – and explored retirement facilities to see where we might best fit in and be comfortable. We even liked the same location.


Since the progression of Parkinson’s is so uncertain and varies from person to person, palliative as well as end-of-life care continues to be an open discussion between us.


Focusing on the emotional “us right now” proved to be the huge stumbling block.


We both said we wanted the marriage to work, but each of us had significant doubts. The trust that we’d had in each other had greatly eroded, and we realized that PD and its medications were overwhelming our duct-tape patches.


How had we gotten to this dreadful place? We both jumped at the chance to add a social worker to the expanding Thelen PD care team to help us work through our conflicts.


Our terrific therapist quickly identified our primary challenge. For two people who were professional communicators, we were lousy at communicating openly with each other. Those are my words, not the therapist’s.


We had drawn too many assumptions from each other’s actions and non-actions. We had raised too few questions when they should have been. So when the diagnosis of PD hit, neither of us was prepared to deal with it together, as marital partners.


When Gil came home from his doctor’s appointment and shared that he had Parkinson’s, my first reaction was relief. Now there was a name for all those frustrating symptoms of his. Relief quickly gave way to my question of what exactly is Parkinson’s, and what does it mean for us?


I set out to learn. He did the same. But we did not talk to each other about our findings. I thought Gil was just taking a long time to process the diagnosis. He thought I was in denial and not interested in understanding what having PD meant.


Neither of us brought up what it meant for us, as a couple. We didn’t talk about what each of us thought was ahead and how best to tackle PD together.


Gil didn’t hesitate to say that he was feeling this or that way because of Parkinson’s on any given day. But he never seemed to want to talk about what it meant to him – only that he was determined to live in the moment because he did not know what the future would hold.


When I mentioned things that I had read about PD, I got the distinct feeling that whatever it was old news or did not pertain exactly to him.


He had become manic about researching his condition. Whatever I learned seemed inconsequential. He had the medical background. I did not. He had Parkinson’s. I could never understand what it was like. I should not even try, his tone of voice and body language told me. PD was driving a wedge deeper into our relationship.


Looking back, we should have been able to give each other an appropriate length of time to let the diagnosis sink in and gather information about what could be ahead. Next should have been a conversation about what it meant to us, separately and together. Instead, misunderstanding whacked the wedge further into our marriage.


It took almost two years before I went to a doctor visit with my husband. I thought Gil never wanted me there.


He always seemed to be asserting his independence. He thought I gave higher priorities to our children than to him and his PD issues. We were wary and stalemated.

I broke the impasse, crying that he was shutting me out of his life so completely that he didn’t even want me attending his doctor visits.


The “shut-outs” had been coming faster and faster, I felt.


His violent dreams, which began some five or so years before diagnosis, had sent him to another bedroom. Yes, I missed him greatly in bed, but I could now get a decent night’s sleep. He said separate beds eased his worry about waking me up with his active dreams. So separate bedrooms was worth it, from my point of view and his.


His upstairs home office got traded for the neighborhood cigar bar. I missed him around the house, but I did not have to worry about him going up and down the stairs or the cigar smoke and mess on the lanai. He said he enjoyed the camaraderie of his cigar smoking friends.


Gil jumped into Parkinson’s with both feet: getting trained to help others with PD, writing a blog, voraciously reading about Parkinson’s, attending patient-supports, kicking off a 9-month long PD course, speaking at support groups and Rotary club meetings, meeting with fellow Parkies to share experiences.


He had always kept busy with part-time jobs after retirement. That wasn’t so new. But now he just wanted to be around people in the Parkie community. I was included in these new friendships and activities only when it would seem awkward for me not to be there. I still had my friends and tennis community, and surely this was a phase that would pass, or so I thought.


I felt more and more like a prop: Expected to smile and be at his side when he wanted me there. Expected to host and attend events that were important to him, not necessarily to us. I never felt needed, except for PD-related things.


In exasperation one evening, I flung my glass of Kendall-Jackson Chardonnay in his face. “Just go be with your PD friends,” I yelled.


I felt more and more like his maid: Expected to cook his meals, do his laundry, cut his food, help him get dressed, put on his medication patches. Expected to give up my tennis at the spur of the moment to do something he thought needed to be done right then.


I felt less and less like a wife. I felt very used and unappreciated, and certainly not loved. I was quite willing to do things that Gil needed me to do, as long as I was getting something good out of the relationship, too.


How had he become so cold, self-centered, arrogant, impatient and quick to jump to conclusions? He was no longer collaborative, sharing, sensitive, caring and loving. We were no longer married. We were co-existing…and not very amicably.


Trust had become a major issue for us. Gil began sneaking around to avoid what he said he thought would become major “justifications” or “flame ups” to me.


When he wanted to use another brand of bath soap, for example, he purchased it himself and tried to sneak the package into the house under his coat. For me, that translated into not being able to trust him to have a simple conversation with me. Why couldn’t he just tell me he wanted me to buy another brand for a change? Soap was such a minor thing. And worse, what else was he sneaking around about?


In angry desperation, I said I was not going to continue to live like this. I wanted out. A divorce. “In sickness and in health” did not mean I was to be an unloved servant. Let him deal with whatever PD had turned him into. I was not going to spend the rest of my life in a relationship with someone who did not love me.


I saw his changed personality as no longer caring about our marriage or making any relationship work with others who did not operate or see things as he did. He had become hardline and unforgiving.


I understand that a person cannot separate themselves from their condition, but Gil seemed to have no room in his life for anything or anyone not associated with PD. He turned to those who agreed with him, at all hours of the day and night. I turned to my friends.


Enter Wonderful Counselor. She was able to help us see that our issues went back further than PD, and that if they were dealt with, we could tackle PD together.


All those “I choose not to fight this battle now” decisions probably had been the right thing at that time in our marriage, but they actually had gotten us in the habit of not completely sharing the way we felt with each other.


We also came to realize that some PD medications – beyond the basic stress of an incurable disease – were making our marriage even harder.


In retrospect, much of Gil’s compulsiveness was related to the dopamine agonist he was on. He tried two. Both agonists have been ditched.

His behaviors included impulsive spending (like buying a new car without consulting me or the family budget), increased sexual libido, feelings of self-importance, the need for constant praise and being overly enthusiastic about whatever his latest endeavor was. His daughter once asked me in confidence if he was OK because his recent phone conversations with her were uncharacteristically long and jubilant.


Gil and I now joke together about him being “too close to the edge of the diving board” when one of those over-exuberant occasions presents itself, although it happens much less frequently.


Whatever lies down the road with Parkinson’s, this care partner is very glad she has a therapist on speed dial.



Lesson Learned:

A social worker/therapist is a very important part of a care team – for both Parkie and care partner – because the medications and stress of Parkinson’s take a tremendous toll on a marriage. Even if one thinks the marriage is solid and open, it’s worthwhile having several sessions to be sure there are no stumbling blocks as a couple faces their new “PD life” together.



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