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

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.

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

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!

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?

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.

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

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.

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.

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.

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.

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

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?

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.

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 ❤️

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

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.

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.

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!!!

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.

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

You have two choices: find a nursing home for him or divorce him.

If he assaulted you and is crying wolf about it and wants to divorce you? Things will not get better. He crossed too many lines for that.

Mental illness is not an acceptable excuse to assault someone or be abusive to someone. What he did was abusive no matter how you look at it.

Either way, you can't live with a person like that anymore.

If you put him in a home and give the orderlies and the doctors and the police a list of all of the times he's hit you or done equally shitty things. If you can record it on the phone for further evidence, the better.

If you are against nursing homes, divorce him. Pay him alimony if it will help assuage your false sense of guilt, but walk out of that abusive relationship.

Jose, similar situation. How did you and you wife (if still together) handle it?

I am happy to find finally some realistic words from caregivers, they touched me. I am 51, my husband is 50, he has been diagnosed with Parkinson disease three years ago. We have been married for 25 years, we have three almost grown up children and it was more or less a happy relationship. I say more or less because he has had a kind of egoistic, sometimes narcissistic character before but it was bearable, I felt to be loved from him. But in the last year since the PD had progressed and he is taking dopaminergic agonist medicine, he became very manipulative, egoistic and self-centered. We used to know how to make compromises otherwise we wouldn 't be together for such a long time. Now he has sudden anger outbursts (he used to have fast anger before but not so intensive), he does not make compromises anymore, everything must be in a way he decides (my way or no way), he became a very egoistic and self centred person. I am scared how our future will look like, I do not know if I can bear all these because I have had burnout four years ago and my health is not strong enough to live with such stressors. My mother had died of cancer two years ago after ten years of caring for my father with another type of dementia, I am scared that my destiny would be like hers. I am a Christian and a big empath, I always cared for other people and for my husband and tried to calm down his temper, I raised with love our children and despite all difficulties I had always believed that our love will pass every burden. But now here is a disease that is changing my husband, he is not a loving spouse anymore, he is not someone that I had commited to. I was raised in a belief that marriage can never be broken and I always have thought that my marriage will last until I die but know I have doubts, I am scared that I will not be able to manage it because of this horrible disease which is taking my husband away. I love him deeply but now he only shows his love back occasionally, I feel so lonely sometimes as I have never felt before. He took seriously that he has only a few quality years left and now he wants to do everything within a short time but without me, the only thing important to him is to fulfill his life. And where am I, where my life is? He became controlling, he can have anger outburst because of a minor issues, he has obssesive compučlsive tendencies in a way that the house must be very clean so a single forgotten unwashed dish can trigger his anger. I ask myself where the limit is. I am deeply sorry for him to have such a horrible disease, I know that he suffers the most but I still wish to have my husband back, I never have felt so lonely in my life as I feel now... so unfair from life, so cruel to both of us... And there is nothing to do, there is no cure for that, I can not get my husband back. So I have to live with this egocentric person that doesn 't care for me anymore, which is not the same person I love? I will do it because I was raised to live this way, to give up myself for the happiness of others, but is this the right way to do? Will my own health set the limit? I just hope not to wait for too long, I hope I will survive.
Many questions and thoughts are bothering me and I am happy that I found you to share my thoughts with and to see that I am not alone. PD is cruel to both, of course more to the patient but also to the spouse. It is cruel to both members of the couple because it robs them both of the relationship that they once have had. Big hug to everyone who xeperiences this cruel disease, may it be a patient or a spouse. I feel robbed too, the same as all of you on this page!

My spouse has PD. I sat down with my pastor and shared all the changing details of our lives and our relationship, my fears and hopes. When I was done he said, "Be flexible" and that is it. I was surprised that he did not have more advice, ideas on how to make it through, but as the years go by his advice makes more and more sense.

I need to find a solution where we are both as healthy as possible, especially my spouse (as I believe that we tend to take care of ourselves more naturally). But I cannot follow some dictum and then wake up crazy and be successful in caring for my spouse, not to mention myself, in the future. Self care is very important in the care for my spouse. I cannot do it alone.

I don't have the solution yet, and even as I get closer to a solution, I know it will inevitably keep changing. Those of us who are doing it know this. We know that love is the answer, and that we need a lot of love. ....

Good luck! I have no silver bullet..... Be flexible!