My heart is breaking because my Husband (who was diagnosed 2years ago) and I have decided to separate. I am devastated but know this is his choice so I have to accept it.
The issues were there before but PD has certainly contributed.
For the past 4 years I have been pushing my husband away physically. It started because he liked to drink and this wasn’t attractive. Then his moods and complaining (which we now know was the start of his PD journey) started to take its toll. Then the pushing away became a habit. To be fair my husband did want me to talk back then but I wasn’t able to articulate why I felt the need to push away (part of me still doesn’t know why now).
Due to the PD meds my husband was highly sexed and worrying I would divorce him so he spoke to his neurologist who prescribed an antidepressant beginning with M. This has worked to the extent that he has no urges now nor any feeling towards me. Sadly this is the moment I realise I do want him physically. God that sounds so selfish.
We had a heart to heart and due to the constant rejection from me in the past he can’t be with me anymore. He says he still loves me and wants us to stay friends.
I love him so much and will be there for him, but omg it hurts so much.
Anyone in a similar situation? Can we be friends? Can I be still be there for him and will he want that? Anyone in my husbands position? I want more than anything to save our marriage but have to accept that is not what he wants.
My heart is breaking because my Husband (who was diagnosed 2years ago) and I have decided to separate. I am devastated but know this is his choice so I have to accept it.
We’re very sorry to hear about this, Zo3. You’re certain to receive thoughtful responses from the community, which of course is the whole reason for the forum, but we wanted you to know that you can also call us to speak with an adviser about this. It doesn’t have to be a medical concern, and they are wonderful listeners. The number is 0808 800 0303. We just want to make sure you’re aware of the option, and we look forward to seeing the replies from the group.
All our best,
Hello Zo3, I’m not married so don’t feel I can make much comment on your post, although having said that all relationships have their ups and downs so maybe that’s not a major criterion. First I want to say I hope posting to the forum has helped a little in getting it ‘out there’ rather than trying to keep it all inside, hold it together. The forum is a safe place to do that so please do post if it helps. You have clearly both gone through quite an ordeal to reach this sad point you now fund yourselves at. Parkinson’s takes no prisoners on the damage it can inflict and unlike some other relationship breakdowns there are other other factors we may have to contend with that other relationships don’t - the side effects of medication, changed behaviours and a host of other things that are very difficult to manage and often have caused much damage before this is recognised or acknowledged. I think at the moment your emotions are too raw and overwhelming and making you feel totally lost. Personally I think you should take solace in the fact that you had a heart to heart and if you can try and keep the lines of communication open; that’s no guarantee you will get back together of course but it will help you both get through this period of uncertainty and upheaval and hopefully keep things amicable which will benefit you both. For now I think you need to give yourself time to adjust, get practicalities sorted and just get through the day as best you can while emotions settle. I wouldn’t expect that to be very fast so what you must do is try and make sure you look after yourself to stay well and don’t put yourself under unnecessary pressure. Most of all be kind to yourself and recognise any feelings you have as legitimate.
Maybe you will get back together in time, maybe you won’t but you will survive this, so will he but it will take time and a lot of untangling of all that you’ve both been through to hopefully reach calmer times.
My thoughts are with you both. Take care. We’re here if as and when you need. Sending a virtual hug.
Thank you Jason.
Thank you Tot. It’s so tough ( on both of us). The sooner I can accept it the sooner we can both move on.
My husband wants to stay living together as friends. I’m trying to be positive and open to the idea but wonder if that will just prolong the pain.
What a dilemma. I’m not sure this will help much or indeed that I’ve got a right to say anything at all given that all I know of you is what’s in your post, but on the basis that it may help clarify your thinking to hear from a neutral, I will press on. Feel free to stop at any point if I am talking out of the back of my head! There are two main points here as far as I can see.
- first it probably makes sense in practical and financial terms in the short to medium term to remain in the same property
- the big question is would this ultimately come at an acceptable emotional cost not only as you say it might stop you moving on but might you also be risking the friendship. I stress this is only my personal view so it may not fit with you and how you feel but I think in your shoes I would feel a need to sit down and discuss with my husband the ground rules if we were going to continue sharing the house - is his view of sharing and yours the same, how do you split up the house, how do we use the shared parts (I’m thinking kitchen here and assuming you have only one), responsibility for bills, what you tell family and friends etc etc. I think it could work but also think it would be hard and I’m not sure I could live like that. That’s my thinking Zo3, but probably not much use since it’s not me having to make the decision. Maybe try writing a list of pros and cons incl options of moving out. At the end of the day I think you have to be honest with yourself and do what’s right for you. I wish I could make it easy for you, sadly I can’t but hope it helps a bit just to post and get a reply even if not especially helpful. Take care.
Thank you so much Tot. I really appreciate your insight. As much as I am desperate for a hug and for him to tell me it alright. I know that’s not going to happen. Already we are starting to feel like strangers. I have made the decision to ask him to leave so I can get on and grieve for our marriage. Hopefully I will then be able to move on and we can still be friends. I am glad I am past the crying stage……I’m definitely more productive now in the angry stage.
My heart goes out to you it really does but was glad to read you have started to makes decisions and think of your future. I was interested that you said grieve for your marriage because that is exactly right, it is a bereavement and my feeling is if you can keep that in mind somehow it may help in that it may help you make sense of all the roller coaster of emotions that you will probably go through in the next week’s and months. I àlso hope that it will help you to believe you can and will come out the other side.
I am going out on a limb here and hope I’m not speaking out of turn and making things more difficult, believe me that’s the last thing I would want to do but my feeling is you want me to be honest. In your first post you intimated that there were already issues in your marriage. In your shoes one of the things that I would grapple with would be how much his Parkinson’s caused or impacted on these. Obviously I don’t know the detail but it is a slow moving condition in most and with the benefit of hindsight little things can begin to add up. You may well end up thinking it’s all the fault of Parkinson’s and that if it wasn’t for that you would not now be in this position,. Maybe you would maybe you wouldn’t but in a way it doesn’t matter. People can only do the best they can with what life throws at them and whilst it is natural to want answers, something or someone to blame if you like, it is rarely black and white and even if it is what difference does it make? As one who is now living with the uncertaiñ future Parkinson’s brings it strikes me that type of thinking is wasted energy, I am where I am and I still have a life worth living,. Grieve as you must but try not to get tied up with a load of what ifs to which you will never truly have answers. You still have a life, it may not be the one you saw for yourself or right now want, but you still have a life and a future same as me and you will find a way to carry on living a good life, same as me. Believe in yourself and you will be ok.
Tot thank you again for taking the time to reply and for being so kind.
We both agreed living together as friends is not going to work. We will only end up resenting each other. My husband is looking at a flat next week. We had a heart to heart and both feel lighter (although for me the pain is unbearable).
I am worried about his Parkinson’s. He was only diagnosed 2 years ago but mentally really struggling. His symptoms are mainly internal, he doesn’t have any of the outward tremors but constant pain inside. He shuffles like an old man. His head is suffering the worse. I wish to god at the start of this journey the dr offered some counselling so we knew kind of what to expect. My crappy reaction to everything has cost me my marriage. And yes, there were issues before the PD. But I want to be there for him. I just don’t know how anymore
Hello again once again I’m back but not sure what I can offer that will help much but, as I said before there may be something in my ramblings that strikes a chord so I will press on but please don’t feel you have to plough through it unless you want to and feel free to say ‘no more Tot’ (ie shut up) if you’ve had enough of hearing my what ifs and maybes. I did want to pick up on your comment about your crappy reaction costing you your marriage because I doubt this is wholly true if indeed it is true at all. Fact is until you actually find yourself in a situation you will never really know how you will react and I will repeat here what I said before, even if it’s true spending energy on something that can’t be changed serves no useful purpose; as far as I am concerned that energy is far better used if treated as an experience from which you can carry forward lessons learned to manage today and the future.
Parkinson’s is a very complex condition, you will often hear it said it affects all of us differently, and it is difficult for us who has it to fully understand it sometimes, so for people like yourself you’re on the back foot before you start. However I think it is worth pointing out, in case you weren’t aware, that there are some 40+ non motor symptoms and that for many these are a bigger issue than the physical. If your husband is sort of at war with himself (if you know what I mean) this may well not be helping his physical functioning. Parkinson’s can be exhausting because it can take an awful lot of concentration to do the simplest things sometimes. Some cope with their Parkinson’s by seeing it as a battle or war and do very well on it, their rage and anger seems to keep them going. That’s not for me. I accept I have Parkinson’s and I also accept that as things stand there is no cure by default therefore, I accept it is part of me and do what I can to lessen the impact of whatever he (I tend to think of it as old Parkie or Mr Parky) chooses to throw at me and there are two things that help me do this. Firstly I flatly and absolutely refuse to be defined by my Parkinson’s, I am and always will be Tot first who happens to have Parkinson’s, it’s a part of my life, a significant part i grant you, but it’s not my life. Second and again this is something I say time and again a positive mindset, attitude if you like is the strongest tool I have at my disposal. It’s not always easy and I have my moments but by and large it has stood me in good stead for over a decade. The reason I am telling you this is because both of you are under enormous pressure at the moment. It could be once you both reach calmer waters his symptoms might improve a bit.
Finally (you’ll be glad? relieved? to hear ) I understand that you want to be there for your husband but he has to find his own way to have Parkinson’s as his shadow and create a life for himself, just as you have to come to terms with all that’s happened. If you think about it relationship breakdown and moving are known to be big stress factors, throw in the Parkinson’s variable and it’s hardly surprising that you are both having a hard time of it. You have no reason on earth to be so hard on yourself. It’s not your fault. It’s not his fault. It’s just life. You are doing the best you can on alien territory, and as far as I can tell, despite all the hurt pain and anger you are still talking, still trying to keep things amicable even though you can’t at the moment anyway, be together, that’s no mean achievement you know.
Finally, finally and on a practical note. I don’t know where your husband is in terms of contact with his medical team but it might be worth him having a word with them, maybe his treatment needs a bit of tweaking. Alternatively he can ring the help desk and see what advice or information they can give.
My apologies for another long post if indeed you managed to get this far and as I said at the beginning if what I write is of no use to you just say so. I am very conscious I am doing an awful lot of reading between the lines so what I write may make no sense to you, but I sincerely hope this isn’t so.
Hang on in there, you are doing fine, it’s still early days.
Hi @Zo3, Having read through your posts countless times I don’t know if i’m the right person to respond but I will try, though I see @Tot has gone way above and beyond the call of duty in offering her help. Give him a while on his own to see if he can cope, if by this time he realizes that life without you isn’t the same then be open to friendship for a start. Then you can put down some ground rules for how you want the relationship to develop, tell him that his boozing and attitude towards you with it will have to change,personally I drink very rarely even though booze is at hand if I want it, I don’t feel the need for it. With him having tried to force himself on you in the past when you didn’t want it constitutes to rape whether you’re married or not. There was a time when I was on a Parky Drug that made me highly sexed and I was soon taken off it !! Although off the drug I am still highly sexed(but I was before the onset of Parky !!), though when my wife says no I have to respect her wishes and have to do my,“washing by hand,” so to speak !! LOL
You have to be firm but fair and remember it is a two way thing with a little bit of give and take by both parties. All being well you can make it work again but go into the situation with open eyes and a better understanding of Parky and be more aware of what it involves. Both Tot and myself and the whole membership on the forum are here for you and as @Tot often tells people, you are never alone on here whether you are a carer or sufferer we are here to help. Take care, stay safe and be positive in your decisions, I wish you well.
Dear Tot. Thank you again. Your response is eloquent and made me look at it from my husbands side. Yes it’s hard but I have to comes to terms with the decision and take a step back. I think you are right and I’m sure his condition will improve away from our marriage and the stress that brings.
It’s a hard lesson and one day I hope to smile again.
You are a positive person and I appreciate you taking the time to help me. You are someone I would love to have in my life as a friend.
I hope you continue to approach life this way and you enjoy your own ride x
Thank you for responding. My husband is looking at a flat on Thursday and I am stepping back. Don’t get me wrong it’s breaking my heart….but it’s what he wants and needs.
I don’t want you to get the wrong impression, my husband has never forced himself on me. But due to do many factors I was pushing away physically and he was pushing away emotionally. Not a happy mix.
I’m not sure how friends will go. I guess I will give him the space and be here if he needs me. As selfish as it sounds I need to focus on me and my daughter.
Hi @Zo3 I haven’t posted for a while. Signed in today and quite sure I was meant to see this post. My husband was diagnosed with yopd at the end of 2019. It was a shock but we both took it in our stride - or so we thought. To say that the past year has been the biggest test of our 19 year marriage is an understatement. Our most solid of solid relationships has been tested in ways I never thought possible. If someone had told me a year ago we would be throwing around the ‘D’ word, packing our bags and envisioning a happier life without each other I would have laughed in their face but unfortunately these are some of the motions we have gone through. Him feeling I will leave him due to his condition and moods hence pushing me away, me pulling away resenting him for his moods and for the fact we may not be able to do all the things we planned. By some miracle we have kicked and screamed our way back to each other, determined not to let parkinsons take more than it already has. What you have said really resonates with me. This is perhaps the side of parkinsons people don’t see. It takes more than just the physical and mental. I sense there is love between the two of you and still something worth fighting for. Talk to each other. My husband and I have stopped taking each other for granted and have become more present, taking each day as it comes. For the first time in a long time I feel like our gains are outweighing the losses. I have everything crossed for you. You have to do what’s right for you ultimately but yes, I believe parkinsons can position itself like a third wheel in any relationship and throw it completely off course. Sending you lots of love.
Ps, seeing some of the other supportive messages has reminded me what a great forum this is.
Thank you for posting Momyali, I do hope Zo3 can take some comfort from your words. You are far better placed than I to comment given your experience. Maybe Zo3 and her husband can in time make their way back and maybe not but it is clear from what she has written that there is much they continue to share even if at the moment they are both floundering. I hope they,like you and your husband can find a way through that is right for them both be it together or not. My wish for you and your husband is that you are able to keep Parky firmly in its place. I have no doubt you will do your best to do so. Good luck to you both it was good to read your post.
I was very touched by your kind words but I want you to know that it is not as one sided as it might appear. To be able to post on the forum and maybe help others in some small way gives me much not least that I can still be useful, make a positive contribution if you like. I had to give up work some time ago and although I am holding up well, life is different for me now and so it would be all too easy to feel I had little to offer. You will have gathered that I can often feel I am winging it, but I know too that I only write how something seems to be to me and I am satisfied with that. Your words were a bonus and meant a great deal. Thank you.
Hi and thank you for replying. I am so glad you and your husband have talked and come to an understanding. I so wish we were able to do that. Knowing it’s too late hurts so bad.
I don’t think there is any hope left for us.
Keep strong and reaching out when you need to x
Hi again @Zo3, Never say never as the saying goes and also, time is a great healer and a lot of water has to flow under the bridge before getting back to being happy. While your husband gets himself sorted you need to be focusing on the needs of your daughter however old she is. Hopefully, as I said before, there may be light at the end of a very long tunnel, just hope and pray that your husband realizes what he is missing without you and comes to his senses. With @Tot being instrumental in helping you through your minefield shows that there are people about who care for your well being. As i’ve said before, you’re never alone on this forum as i’m sure @Momyali will confirm. Anything you want to discuss we’re all here for you. Have as good a weekend as humanly possible and stay safe.
Hi @Momyali, Thanks for the virtual hug, always welcome in these dark times, all being well after June 21st we may start to see light at the end of the tunnel. This all depends on how people behave and how many who refused the jab before decide to take it up. Have a safe and great weekend with your family.