My Spouse Has Parkinson’s Disease, So I’m Going Out

My Spouse Has Parkinson’s Disease, So I’m Going Out

Sherri Journeying Through

The Press Democrat published the following question and reply from the “Dear Abby” column just this past week:

“I’m a 72-year-old married woman. My husband has atypical Parkinson’s and can no longer talk or walk … I need someone to talk to, to share life with. I tell my husband what I do each day, but of course, there is no feedback. …

“Can I date? If I explained to him how I need companionship, he might agree. But am I being selfish? … I feel like my life is over. … I feel like I’m dying.”

Dear Abby replied:

“I think it would be not only selfish but cruel to tell your husband you need companionship and want to seek another relationship. How would you feel if you were in his position, unable to walk or talk, and he said that to you?”

I think about the coming years and think about how that could be my husband writing Dear Abby. It might go something like:

Dear Abby,

I am a 58-year-old man. My wife has regular (that’s relative) Parkinson’s disease. I have to put on her socks and shoes, let her use the grocery cart to stabilize her mobility issues, fix her meals without making them too spicy, make sure she takes her meds on time so she doesn’t get crabby and start shaking like the washing machine on the spin cycle, and well, you can fill in the blanks.

Can I see other women? I mean, she’s just not as attractive as she was when I first saw her and told myself, “I’m gonna marry that girl.” Well, “that” girl is gone. The girl of 40 years ago now shuffles like a penguin, and I have to walk slower than I’d like to “keep up” with her. You know what I mean? The sparks just aren’t there, even though we got married on the Fourth of July. What do I do? I want a real relationship.

My husband is a caring, good man and would never write that, and I am sure he doesn’t feel that way. This is a hypothetical situation, stemming from the real letter penned to Ms. Abby. But I am sure there are plenty of spouses, caregivers, partners, and the like who feel that way. And there are just as many, if not more, people with Parkinson’s disease who wish they could go back in time and make the choice not to marry if they could have seen the future. If they could have seen the burden they were going to become to the one they pledged their life to.

But we can’t go back in time, and we don’t get a do-over. We have to make the best of the moments given now. Today.

We’ve got to talk about the hard things now, while still able. Make some decisions now while we still have use of our brains. Decide together whether our spouse can go dancing with their new girlfriend (or boyfriend) while we stay home alone staring at the ceiling.

Can you imagine?

I believe, no matter the faraway look in our loved one’s eyes, that there is still someone inside who feels. Yes, they want their spouse to enjoy their life, keep in touch with friends, go to a movie with one of the kids. But date?

I am sure there are some who give their consent and even perhaps their blessing. But that’s not what the majority go into marriage with — a clause to retreat should the going get tough. They choose “till death do us part.”

Some people retreat completely when they hear the diagnosis of PD. They choose to go back on their promise and get out. And then there are some who dive into their new role of caregiver and look like angels, or at least, heroes.

If you are a caregiver, may I suggest the same that Ms. Abby did? Find yourself a support group to get involved in. And if you don’t have a friend that you feel you can talk to about your struggles, find yourself a new friend. If your grown children don’t live near you so they can offer some help, a move on someone’s part might be worth the consideration.

But dating? No. My personal opinion, but no.

Pick up the phone and dial the American Parkinson Disease Association at 800-223-2732. They can assist in finding a support group near you.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Sherri was diagnosed with Young Onset Parkinson’s disease over fifteen years ago. She can be found working in her garden, going for walks, taking pictures, or reading books to her three favorite grandkids. Taking life somewhat slower, and perhaps with guarded steps, but she’s not giving in.
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Sherri was diagnosed with Young Onset Parkinson’s disease over fifteen years ago. She can be found working in her garden, going for walks, taking pictures, or reading books to her three favorite grandkids. Taking life somewhat slower, and perhaps with guarded steps, but she’s not giving in.

21 comments

  1. Allison says:

    After increasing isolation in our home, my husband (who has PD) and I moved into an independent living apartment in a continuing care community. Now we both have daily opportunities for interacting with others. I can’t imagine wanting to ‘date’, however having at least a modicum of a social life has been good for both of us.

  2. Dee Moss says:

    i know these feelings, but would never go with anyone else-we married for better or worse & have been together 53 years. Yes, I do miss our companionship! It is hard, watching him slip away!

    • Barbara Fox says:

      My mother still would rather run her bar then be home with my father who has Parkinson he is left home alone for hours he has some times messy pants and don’t eat only drink ensure us girls help when we can I gave him a bath yesterday and made him wear diapers but I am really upset with the care my father is getting and everything we Suggs they do not want

      • Barbara – I am sorry to hear about your struggle with your dad. Is there any way you can get help from his doctor? He may be able to give you some suggestions on at home care. I wish I could do more. You are in my prayers.

  3. Amy Peterson says:

    Yes, but I am young. He got diagnosed 4 years ago when I was 50. He makes my life a living hell. Up at all hours, mean belligerent, tears up the house. Won’t listen blames others for his problems. I am beginning to hate him. He was an alcoholic and I stuck by him. But when does it ever end? I am supposed to give my life up for him?

    • LKS says:

      No. That is abuse. No one has to put up with that. You are not called to give up your life for him.
      An abuser has broken the marriage contract. Find a good therapist or counselor- one who is familiar with alcoholism and abuse issues.

      Put him in a care facility or find a good lawyer and salvage what you can of your life.

    • SMR says:

      I feel for you, it’s similar for me. Much older man, no respect for me at all, hoards, messes everywhere, disgusting habits, belligerent, etc I think it’s the medication he’s on, he could have meds that make him easier to live with but not so mobile, of course he has chosen mobility over being better for us/me. His Parkinson’s is killing me rather than him and I’m 13 years younger than him. It will be me that goes first as I am worn out with being disturbed in my sleep, working 60 hour weeks on night duty to keep the roof over our heads, looking after him and constantly clearing up after him in kitchen, bathroom etc there’s no joy in it at all. And he’s not there for me, hasn’t been for a decade now. But there’s no solution as I would feel guilty to go as he has no one else who cares, and I feel so down staying. It’s crushing me. I know others have worse to deal with and so I ‘soldier’ on but no one knows the heart break, the depression and the waste of time my life has become. The healthy strong person ends up paying with their life for the one with the body that’s ailing. And the ailing one doesn’t care at all. He is happy in his self centred, foggy world, all the health care professionals make a fuss of him, they treat him for everything at every turn, he loves their attention. And I am just a skivvy. Worthless. Exhausted. Stuck.

      • SMR – I was so saddened to read your comment. My heart truly does go out to you. You are a real trooper and if I were you, I would talk to your partner’s doctor by yourself and see what he has to say. Try to get into a support group for caregivers. This might be a lifesaver for you. Please keep in touch and know i am praying for you.

      • Heather says:

        I have been with him for a long time and I feel for you because I’m feeling the same. Only, I am 25 years younger with 6 yr old triplets. And working, and it’s crushing me. I finally contacted a lawyer today to discuss divorce. I also contacted 5 assisted living places to prepare for the conversation with him, because in our last “discussion” when he said he’s unhappy, he expressed he felt he had nowhere to go. Well, I’ll help with that. I care and want to see him somewhere that he’ll be okay, but I am mentally exhausted. You also need to think of yourself.

  4. DBM says:

    SMR… I felt I was writing this!Am 9 years younger and feel so disrespected and unappreciated. My joy for life is being sucked out of me. Where do you draw the line between trying to preserve some self esteem for yourself and becoming cook, cleaner, caregiver, concubine on the “for better or worse” platform. What makes his disregard acceptable, and I must “suck it up buttercup.” We are so rural and isolated, and only 2 years into full diagnosis, I feel I will go first. You nailed it… skivvy.

    • Queen B says:

      My partner has PD and in to his 5 th year.
      A week ago he called the police and said I had assaulted him. It was actually he who assaulted me. He now wants a divorce.
      He is not the man I married and I love him, however he is mean, belligerent and controlling. Can anyone advise me. I am devastated . I love him, But not his behaviour

  5. Queen B says:

    My partner has PD and in to his 5 th year.
    A week ago he called the police and said I had assaulted him. It was actually he who assaulted me. He now wants a divorce.
    He is not the man I married and I love him, however he is mean, belligerent and controlling. Can anyone advise me. I am devastated . I love him, But not his behaviour

    • Julie – i am so very sorry to hear what is happening to you and to your husband, Have you spoken to his doctor? Could it be a medication he is on or perhaps could be on to get him back on track? I don’t have much advice to give, as i’ve Not had experience with that type of situation. I am posting your comment in the hope someone else may have some wisdom for you.

  6. H says:

    I feel like many of the answers given are from the perspective that the spouse with PD needs a partner who can accept the condition and “if a caregiver struggles then you can go get a support group.” And I think it’s wrong to make those assumptions. PD can last years, YEARS. And what is being asked is that the spouse without PD to GIVE UP on life and sacrifice their own for the sake of the spouse with PD. Living thus day in and out for 20 years, I’m well aware of what caregiving is like, and I for one am not going to feel one ounce of guilt for wanting connection to other humans. I feel like these advice pages aren’t realistic and it’s a closed-minded unrealistic approach. I’m not saying everyone should go do what they want without regard, but it shouldn’t be immediately looked down upon for choosing to have intimacy with someone else.

    • Queen B says:

      I agree.
      It’s one thing to be a caregiver and another to be abused .
      I am devastated with my husband’s recent behaviour.
      He actually wants his dog rather than me. It’s an aggressive German Shepherd.

  7. Johnny says:

    I have YOPD and have been married for 9 years. Our marriage struggles around both our issues. I feel I am treated as though I am one of the abusive husbands mentioned here and it hurts. I do fully admit I pushed my wife once and it is not excusable. I had tried to set boundaries and leave the conversation and she became violent. I nearly got a freezer door slammed on my head as I was getting her ice so she could use TIPS skills to calm down. I turned and grabbed her by the wrists and pushed her against the wall, something I instantly regretted and regret still. I took accountability for my actions yet every time there is an argument it is thrown at me. That and I didn’t sign up for this whereas she feels I knew all about her condition and what it entails (bipolar BOD) we have worked things thru and are both trying I just feel so micromanaged and a sense of Hyper vigilance. You would think I was already gone and dependent yet I’m very physically active and self sufficient. I feel less and less connected to my emotions due to PD, my childhood and just being worn out. I’m trying to make the best out of life! It’s hard work and that’s what marriage is. Both parties have to work at it. Abuse breaks that contract and I would have understood if she left. I would understand if I left too. I’m just tired of all the negativity, she feels the things I do for self care are things I’m choosing over her, when for me I’m doing what I do to make my life enjoyable and keep myself healthy and happy for both our sakes. I don’t drink or gamble or do drugs and I’m not some sex crazed luny because of a dopamine agonist . I am impulsive and I’ve directed that energy into art and skateboarding again.
    Well that was a lot
    To those in abusive relationship, no, you should not feel you have to endure that. That’s neither true nor okay. To those that are just unhappy find your happiness in other places. Marriage is for better for worse, that is precisely what you signed up for. It could just as easily have been you in their place.

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