It weighs heavy on my heart, my dear friends and acquaintances who are challenged in their relationships due to the horrid disease process. After reading through hundreds of responses to a post on social media by a heartbroken man who experiences Parkinson’s I decided I needed to write it out.  (like, write it out of my system)

What happens to the loyal spouse when her mate of 30 something years drifts away into dementia from a degenerative neurological disease. She is lucky to get a day away now and then and recently visited my home.  Continuing to work provides for insurance and a break from everyday stress. He seldom talks but does express a simple thank you for a meal. She has taken care of all the necessary financial and legal responsibilities in preparation for the eventuality of his passing.  He mostly sleeps now. She misses his companionship and is lonely even when he sits across the table from her.  Admitting she is no longer in love with him, but still loves him and will honor their wedding vows “in sickness and in health until death does us part.”

A second person I recently spoke with is an attractive woman in her 60s.  Her husband divorced her years ago when she was diagnosed.  There have been other men in her life, but none was willing to enter into a permanent relationship.  As the disease progresses she is frightened for her future. Where will she live? Who will make important life decisions for her should she be incapacitated?  She doesn’t want to die alone. Who does?

The man who posted on social media, he was devastated.  After he was diagnosed with Parkinson’s his wife of 34 years filed for divorce.  As if this wasn’t enough, she attacked him with vicious comments “you are ugly, no one will want you” spewed from her mouth.

Linda Olson and her husband were driving a van that was stalled on train tracks. The train demolished the van and yet she and her husband survived. She was unconscious for days, awakening to discover both her legs and one arm had been amputated. She carefully planned the words she would say when she saw him, not expecting him to want her incomplete body.

His immediate comment was “I didn’t marry your arms and your legs … if you can do it, I can do it.” In the following days as they were recovering, they chose to focus on what they could do, not what they couldn’t do.  

Linda was diagnosed with Parkinson’s three years ago. Isn’t it enough?

Enough is too much.

Isn’t it enough that we have an incurable disease?  Isn’t it too much that our partners suffer from fear, from physical breakdowns?  They suffer so much that they lash out and mistreat us.

Linda and her husband made it through.  There are others who have too.

Please respond to this post with your thoughts about what happens to relationships when one of the partners has an incurable neurological disease.


4 responses to “Relationships”

  1. I gave my 41 yo husband the opportunity to leave, but he was having none of it. He says he’s here for the long term, no matter what happens to me. I’m 61, almost 62. He works too hard now that I can’t work full time, but he’s chosen to stay with me. I’m very lucky. People who are alone, or are left after they’re diagnosed, I feel for them. I can’t imagine what it would be like. I see some of the same things you do, and I wish everyone could have the same kind of support I have.

    1. When I listen to these stories, I get a twinge of guilt for the good life I have. I don’t know why, do you have thoughts on that Monique?

      1. I do too. Why am I so lucky? I don’t know. Part of it is picking the right partner, of course, but one doesn’t ever really know how someone will react at these times even if one thinks they do. A twinge of guilt is okay, we merely recognize our good fortune, but it isn’t something we should feel guilt about. We do because we recognize that not everyone else is as fortunate as we are, and we have empathy for others. So not a bad thing in itself.

  2. Thanks for keeping the mud and guts of true love in front of us… the paradigm shift of moving from our often undefined ideas and expectations of what life is ‘supposed’ to be like wilt when the real turns and twists of life are realized. Your resolve and determination to keep what matters most in full view takes some of the sting out of the possible shock of what we don’t expect. This is where we live.

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