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

Sherri Woodbridge avatar

by Sherri Woodbridge |

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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.

***

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.

Comments

Allison avatar

Allison

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.

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Sherri Woodbridge avatar

Sherri Woodbridge

Thanks for the comment and glad you’re finding some social outlets! It’s important!

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Hannah Grassie avatar

Hannah Grassie

Thank you for writing about this. It is a sensitive topic but worth discussing.

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Sherri Woodbridge avatar

Sherri Woodbridge

You’re welcome - my pleasure!

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Yvonne McMahon avatar

Yvonne McMahon

so very difficult when your spouse can no longer communicate. Support groups do not work for me, I don't want pity! I don't want to feel sorry for myself. Too many care givers blame their spouse for their poor health and position in life. I'm a fighter, I pray, I run, I look for the good. But.... these are the hardest times I have ever encountered.

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Sherri Woodbridge avatar

Sherri Woodbridge

Yvonne - the world needs more people like you! Your spouse is blessed to have you.

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Dee Moss avatar

Dee Moss

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!

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Sherri Woodbridge avatar

Sherri Woodbridge

Dee - so sorry you have to deal with this but he is so lucky to have YOU! May God grant you strength, peace, patience and more as you go through the future.

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Barbara Fox avatar

Barbara Fox

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

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Sherri Woodbridge avatar

Sherri Woodbridge

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.

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Amy Peterson avatar

Amy Peterson

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?

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LKS avatar

LKS

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.

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Sherri Woodbridge avatar

Sherri Woodbridge

LKS - thanks for your input!

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SMR avatar

SMR

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.

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Sherri Woodbridge avatar

Sherri Woodbridge

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.

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Heather avatar

Heather

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.

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Robin Hood avatar

Robin Hood

I’m getting out. I’m sick of the constant orders. Can you do this? Can you do that? He’s still considered mild, but since the Dx he acts totally helpless. This is a second marriage and now in our mid sixties, the question is is it me or him. I chose me. You only live once and I am goi g to make the most of what’s left of my life. Selfish? Maybe, but who cares? I am not in ac53-year old relationship or with the person I had my children with. I’m getting out.

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Julia avatar

Julia

I am in a very similar boat, I share your pain.

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Sherri Woodbridge avatar

Sherri Woodbridge

Julia - i am so sorry. My prayer for you is comfort and an assurance within your heart that God is using this for good. May his everlasting love for you never fail.

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DBM avatar

DBM

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.

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Queen B avatar

Queen B

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

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Queen B avatar

Queen B

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

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Sherri Woodbridge avatar

Sherri Woodbridge

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.

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H avatar

H

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.

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Queen B avatar

Queen B

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.

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Annie avatar

Annie

H, thanks for your REALISTIC comments. My husband was diagnosed with Parkinsons 5 years ago. The marriage was cold before the DX and now at year 5 without intimacy and 45 years old, Im ready to find someone to date. I am a christian and my husband was an active minister in the church before he got sick so my imminent decision to separate and divorce is gonna we criticised by many. But guess what..I DO ME! I am not going to sit and wait for anyone to die in order to date again. As a matter of fact hes the father of my children 22,22 and 8 years and I want him to live as long as possible for his children's sake. So there we go, I have initiated the separation process. I have reconciled with myself. I cannot live a life without intimacy nor do I want him to die immediately. So a win-win situation is to separate, divorce and ensure that hes cared for properly. Yes I will do that . What I have outlined is realistic and that is my heart.
Annie

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Sherri Woodbridge avatar

Sherri Woodbridge

Annie - thanks for your heartfelt and transparent comment. i’m Sure others can and will relate to it. Thanks for being so honest.

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Jose avatar

Jose

How do you feel about a younger couple husband 30, wife 28. I have been married to my wife for 4 years. We never had a chance to experience the Joy's of being young and married. As we are approaching our fifth year we have yet to have children something I have wanted long before I have met her.

To be completely honest looking at it from the perspective of a 67 year old (some who has had 20 to 30 with their spouse) is not the same as someone who has just begun to live.

I find myself be a caretaker and a punching bag (to verbal abuse) most days. My wife even told me if the situation was reversed she would not have stayed.

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Timo avatar

Timo

I agree with your article 100% my wife has been fighting Parkinson's since 2005 a person can only take so much regardless how much you used to care feelings change I told myself get busy living or get busy dying
We separated for 6 months which I stopped in every day to make sure everything was good and of course everybody I thought that I was the worst thing that ever hit the face of the world but as always it's easy for someone else to make assumptions...

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Johnny avatar

Johnny

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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Peggy avatar

Peggy

It's good to read that other people are fed up with their spouses with Parkinsons. My partner (we never formally married) and I have been together since 2006. He was diagnosed with parkinsons in 2012 and probably had it long before but with few noticable symptoms. We had a great relationship prior to the past 3 years I'd say with things getting progressively worse in the past year. I feel really guilty because I can't stand him anymore. He's extremely kind to others so it makes it very difficult for me to feel so angry with him. I feel so unappreciated for all I do for him. I know he's overwhelmed with each new symptom and his decreasing mobility, but he won't come right out and say it. He just mopes to himself quietly and when I say, "you're not doing so well," he lashes out with "don't you think that I know that!" He just gets mad and says, "you wouldn't be able to stand it if you were in my shoes". He's probably right but I just feel angry that he won't speak to me honestly about how he is experiencing his symptoms from day to day. He barks back every time I ask if he's taken his medicine. I realize every task is a struggle for him but he pushes away any help, while needing it at the same time. He has grown to hate me, I can tell. He never would say things to me that were nasty but now he has begun to. This really bothers me. I feel like I'm living with a mental patient. I have become exasperated with him and throw my hands up and just feel put upon most of the time. The things I used to do for him because I loved him have become harder and harder for me, along with the increase in his dependence on me. It's a terrible situation in that way. It's hard to see the light. I related to the woman who called her husband's parkinsons "his foggy self-centeredness". That is exactly how I experience him. Fortunately, I have a few friends who ask me how I'm doing with the situation, including a woman whose partner is more impaired than mine. We laugh about what an impossible situation it is to be in. It feels good to laugh. She also doesn't attack herself for being so annoyed with her partner. I belonged to a Parkinson's caregiver's support group for a while (and I attend al-anon meetings too). The al anon meetings help me focus on myself and my needs and try and detach from his behaviors and not react, but I lose it with him often. In the Parkinson's caregiver support group,
I felt badly for feeling as angry as I did at my husband while others were bending over backward for theirs and seemed much more willing to do so without rancor. The group disbanded and I need to find another one. I sometimes imagine how I'd feel if he died and I think I'd feel cheated that he didn't appreciate all I did for him. Similarly, I feel like I'd be guilty for not setting aside my resentments and not trying harder to reach him somehow while he was alive. I am 63 and he is 69. I try and get out and do as much as I can do by myself to feel free and unburdened but the minute I am with him, either he is distant or I am. It's so sad. When I went on vacation without him, I came back and saw more clearly how he had become so controlling and his OCD symptoms always lead us to fighting. I realized he was losing his mind and I didn't take it personally. However, the more time I spend with him, the more I lose that perspective. These medical groups pay a great deal of attention to the patient and not to the caregiver because that is their bread and butter. They try to acknowledge the caregivers but it feels like they just don't recognize the depths of it. I may give it another shot. The more I write this, the more proud I am too of some of the times I have voiced my anger back at him and not taken the abuse/neglect quietly. I think it's helped me not to get sick. He's a very friendly guy and he probably cold find another woman to take care of him. Sometimes, I feel like he should have a woman whose more willing to put up with him. I guess I feel like I've failed in some way.

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Andrew Bradley avatar

Andrew Bradley

I am appalled at the above attitudes. You 'carers' think you have it bad ? How many of you actually ask your partner how they are feeling ? How many of you actually physically touch your partner ? Selfish and untrustworthy.

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Teresa avatar

Teresa

I love someone with Parkinson’s. He loves me too but does his best to push me away. I don’t know what to do. We’re in our 40s. I don’t want to give up

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Sherri Woodbridge avatar

Sherri Woodbridge

Hi Teresa - I am sorry to hear about your struggle. My prayers and thoughts are with you.

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mel avatar

mel

I noticed most of these comments are older... I am 39 and my 48 year old husband has parkinson’s. He was diagnosed 2 months after we met and I decided it didn’t matter to me. I married him a year later.. I am a woman of God and after praying and research I chose to stick by him. I will admit, his inability to sleep and subsequently mine now, has probably been our biggest issue as of now. I am a little concerned about what the future looks like. I have read that it can be very hard on marriages. Any advice?

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Anonymous spouse avatar

Anonymous spouse

It is helpful to read everyone's responses. A decade into diagnosis for my spouse I feel isolated. I love him dearly but I have to say this disease is tough. Between the depression, anxiety, offtimes with meds all those symptoms should be enough. I give him massages, backrubs, kisses; I try to remind him of the connection we have. He is appreciative but he no longer knows how to initiate that type of physical touch. I know it is a manifestation of the disease but I have to say it makes me feel lonely in my own home. We used to have Friday night movie night. The way he feels always gets in the way. I try to politely accept his current state of affairs but I have lost it on occasion, with angst not towards him but this damn PD!!! Aside from the Parkinson's community it is rare to find anyone else in my life who understands. Most just think tremors is the worst of it. I use running for cmy outlet. There are days when that didn't fill the void. I will always love him, but I yearn to be loved.

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Sherri Woodbridge avatar

Sherri Woodbridge

Hi - thanks so much for leaving such a heartfelt comment. I just finished an article on those who are sandwiched in with this disease as they care for kids on one side and parents on the other while trying to care for themselves with this disease. I think the caregivers of people with Parkinson’s are right up their with them as heroes - for sure. He is so blessed to have you. My prayers are with you...

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Anon avatar

Anon

Would like to email this lady as I also need outlet as well we are in the same boat and may be a comfort as pen pals

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Laura avatar

Laura

Hi all,
Found this website and listened to all of your comments. It is so heartbreaking!
I am from the UK and my husband in/from Australia contacted me online 12 years ago.
We are both Christians.
I moved to Australia and married my husband. I did not love him but he took very good care of me. I noticed strange things he would do etc and felt resentment inside. I just wanted to go back home to UK.
Ten years into our marriage he was diagnosed with PD. I found it hard, although my husband struggled but was a fighter and worked hard until he was cognitively challenged and couldn’t work any longer. He is such a beautiful man, but I was bored and lonely 😩 My husband woke up one morning and said heartbreakingly ‘You need to go back to the UK’
It was the right decision as I had never settled in Australia and was pinning for my family back home. Two years we have been separated, but we talk via WhatsApp nearly every day.
He is living with his dad and his sister is a nurse, and he has lots of support. My husband is gentle, with a beautiful smile and laugh. I have had 2 years to reflect and ponder, and know that I want to go back and care for him. He showed me unconditional love. I had always in the past been abused. I can truly say God has changed my heart towards my husband and everything I took for granted when I was with him, I deeply regret.
It will be tough to be his carer, but like Jesus came to serve, I so now with a new heart want to love and cherish my husband.
I feel deeply for all those who are caring for loved ones, as it is very lonely and hard to say the least. Only you know what you can cope with. No one can judge another. Call upon Jesus for help. He will help you either to cope or make a way out. Finding another partner sadly is not the way to go. Yes, I was tempted but I didn’t and God provided a way out and He provided for my husband.
I am sharing where I am at, because I can relate and identify with the carers feelings and pain. It’s so intensed and nobody I believe can really understand. But God does!
I really don’t want to appear religious because I am not. I have a loving relationship with Jesus Christ and He is always there to comfort, strengthen, and provide.
Love to you all ❤️

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Sherri Woodbridge avatar

Sherri Woodbridge

Thank you Norah, for sharing. Your beautiful story... i am sure it will speak to many...

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Jl avatar

Jl

My husband was diagnosed just a year ago in 2020. He is 77 and I am 71. What I am struck with in reading these comments are the mental problems most everyone is describing with their loved one. According to his PD specialist not all patients have the cognitive problems my husband is having. But almost everyone of these comments could be my husband. He’s so remote and distant and seems totally self centered. That makes it very very hard to continually give without receiving love back. Recently he became disoriented and wonders around all night. For years prior to his dx I’ve had very little sleep because of his sleep disorder so I know he’s had pd for a long time. As someone else said everyone thinks it is just shaking! It’s a cruel disease that robs you both of a normal happy life. It does help to read these comments and to realize this is normal with Pd and I’m not being treated this way because he doesn’t love me anymore. It’s so hard to go through this, one “friend” looked at me when I complained and said that’s a very common disease. As if there was nothing out of the ordinary about what was going on. It’s very difficult to get the doctors, family or friends to understand how life changing this has been. Praying for all who are dealing with this. God Bless

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Sherri Woodbridge avatar

Sherri Woodbridge

JI - I’m so sorry to hear of your journey with your husband and his PD. It is a cruel disease indeed and people may think it ‘common’ but i think they say that because they obviously don’t understand. It is a disease that can manifest itself in a hundred different ways, lending itself to be ‘uncommon’. If you can remember it isn’t you that your husband is trying to make miserable, but the disease trying to take control, you will have a big chunk of the battle fought. Try to hang in there. I’ll be praying for encouragement and strength for you...

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Beth avatar

Beth

My husband was diagnosed a year ago, at the age of 53. I know it's early and he hasn't really had time to digest the news and work through our future. He says he wants a divorce. He feels that I can't/won't take care of him. He says that he would go to counseling if he didn't have PD, but he doesn't have "time" to waste on counseling, given his diagnosis. I love him. I don't want to lose him. My heart is broken.

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Sherri Woodbridge avatar

Sherri Woodbridge

Beth- my heart is breaking for you- I would speak to his doctor and try to see if he might go to counseling - I will be praying for you...

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Elaine Cheyne avatar

Elaine Cheyne

Everyone is different and I find it distressing that people make judgements on carers based on their own life and experience of PD. My husband has the disease and I was his carer for a considerable time before my own health and well-being had to take precede over his. There has to be a limit. I will sound callous to those who sit in judgement but I'm not prepared to give my last few years up to someone who is controlling and abusive and had been for years. It very much depends on your relationship before PD. Support groups weren't there when he was banging on the wall and shouting all night, or when he wouldn't even allow me a minute to visit the bathroom. Holding my hand and telling me its ok and patting me on the head and telling me to get on with it because its my duty just don't wash sorry. I am also an individual and I am entitled to the one life I was given to live as I see fit. I've done enough, end of.

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Rachel Libman avatar

Rachel Libman

I am devastated. I really found my soulmate my heat my everything... We never had an easy relationship but We have always had trust, commitment and a desire to be with each other. All I think about is him. He is my one and only. I am 20 year younger than him . I met him at 45 and he’s 63 now. We have been through a lot. His business imploded when I met him and I felt very secure building him back up. We moved around together with my 3 year old and he has loved her as his own. He was very hesitant get married and I didn’t blame him but it was 10 years before he asked with his mothers ring. He was born in able to have children but I pushed to have I found because I knew he wanted a child of his own. We then had our son. Not the typical love story but it’s all mine... I need help not feeling sorry for myself. I am always crying. I don’t want to rob him or my children of any possible good moments. Moments to cherish. I am devastated. As soon as I get back home I am going to seek out a support group. I don’t know how I am going to stay strong. I feel robbed!!!

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Heather avatar

Heather

I see this was written a couple years ago but I struggled when I read similar responses from Dear Abby and others when I was looking for answers a few years ago. Why? Because it’s a one lens view and the advice given is often by those who have not experienced the things a caregiver has experienced. Now, most spouses who are caregivers for their spouse with Parkinson’s are older married couples, a few who have early onset, and even less who had/have my situation. And when faced with not just Parkinson’s but also being the main breadwinner and having triplets newborns, the situation was going to come to a head. And the advice out there is just terrible. Because human beings will always tell you (or most of the time) that you have to be monogamous and that your DUTY is to the person you married who has this horrific disease. And while I do believe that the majority of us who care for our spouses also believe this, it changes once you are under pressures and compound that with pressures over time, and add to that even more so when you realize life is short. And keep adding to those pressures when a caregiver realizes that (in my case) this had been going on for 23 years and was expected to keep on happening for up to 15 more. Physically and mentally it takes a toll. Panic attacks. Health of the caregiver deteriorated. And in ky case, my request for assistance from family went unanswered. No one volunteered to watch my kids so I could get a break, have coffee, go grocery shopping, watch a movie, nothing. And when family would visit they’d just complain about how my house wasn’t clean and how my kids would be taken away, instead of offering help to a drowning caregiver of someone with Parkinson’s who couldn’t keep the shop going. In the end? He refused help, he chose not to seek a psychologist for his Parkinson’s mood swings outbursts and walking issues, along with his sexual issues, and his issues with money and his car accidents and his hiding Parkinson’s related information. So we divorced and he was in a wheel chair for a year. Now? My kids don’t have to see daddy fall and have firemen lift him. My kids took a solid year to overcome their PTSD from those experiences. And now their dad is walks again and is living in a semi-independent living situation and his family assist him. But I had to force it. I had to live up to divorcing him. I had to mentally and physically exhaust myself before any action would take place. I did all the heavy lifting and research for his love, and it’s been a year and I am MUCH more mentally and physically sound. So yes. The advice out there is awful for caregivers of people with Parkinson’s. They DO need compound hip because they are human. And they shouldn’t feel guilty about it. They’ve hit their wall and their bottom. Period. Just acknowledge it and move though it and understand it. Dear Abby was wrong on this one.

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kitty avatar

kitty

id love to talk to you, my husband has PD (maybe atypical) I am 65 yrs old and he is 67
your words that its hard watching him slip away touch a chord
please do reply

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