Please help if you can.
I don’t know whether anyone else has had a similar experience where PD has vexed their partner to leave?
My wife and I have been together 23 years. 2 months ago she left me for a new improved model who, as she pointed out, does not have PD.
I was diagnosed 12 years ago, at 40. A few months ago my wife pointed out that she signed up to be a wife, not a carer. Turns out anyway she is neither.
I remember speaking to my PD nurse (unfortunately she doesn’t work for the NHS anymore} about relationship pressures and break ups as a result of PD. She told me of many patients who had suffered this fate!
My wife complained that being with me was restrictive, that socially we went out infrequently, and she wanted to experience more of life. So she took up with the guy we employed.
A sick and sorry mess indeed.
I have not been on this forum for a long time. I wonder could anybody point me in the direction of any support etc that may be out there? I think I am clutching at straws but I am currently going out of my mind, quite literally. The pain of the situation gets worse, I thought it may subside but it getting a lot worse.
The revelation of my breakup came as a complete surprise, a bolt from the blue. I had no idea after 23 years anyone could be so callous. I feel completely lost. Even if anyone can relate to this situation, it would be enormously appreciated.
I’m so sorry to hear about what you’ve been going through, it’s absolutely understandable that you’re in pain and feeling lost at the moment.
I’m sure that members of the forum will get in touch with support and advice, but I also wanted to let you know that our Helpline is available to you for support, if you think having a chat with someone might be helpful for you. They’re open from 10am - 2pm on Saturdays, and weekdays from 9am - 7pm on 0808 800 0303.
Take care, and best wishes to you.
Hello Chris, I send my deepest heartfelt feelings that this has happened to you, this is one thing that happens when one has PD. It is not an easy thing to live with (PD that is) be it the one who has the PD or the Carer, ie wife or partner, it has been known to come between couples, which is devasting. Many usually keep to their wedding vows (in sicknes and in health) and battle on, but to some it means the end of their marraige as such, because they feel as if they are now married to a different person, even though you feel as if you havent changed personally. I know I have changed with having this PD, but the thing is I try to enjoy life and not let it get me down even though you feel as if it’s the end of the world some days. I joined the local Parkinsons Branch and also joined the committee which helped a great deal, I felt I then had a purpose, it was a courageous thing to take on, but I soon felt I was among friends and felt at ease among the people who were in the same boat as me by having PD. You may think it’s a little late for you and your other half but don’t despair, keep looking forward and hopefully your wife may realise she still thinks of you and the grass is’nt greener on the other side, in a way show her that life with you can still be active and not doom and gloom as she thinks it will be.
I sincerely hope life works out for you, don’t let Parkinsons get the better of you, keep fighting, I have had the bloody thing for nearly eleven years now and I still have some fight in me - Take care and keep your chin up - sheffy
Thank you so much for your reply. It really is most considerate of you to take the time to write such a reply.
Your positivity is a warm inspiration, very kind, and very much appreciated, thank you.
PD is a horrible disorder that takes control of you, and affects those around you too. I must have made my wife very unhappy, she deserves a life too.
I have looked into local PD groups before, that was quite some time ago, I should look them up again, it sounds as though you have got some good friends in your group.
Once again, thank you so much for writing.
Reading your post has made my heart hurt, sincerely. That has made me very sad.
Whilst I understand the pressures that advancing PD may have on relationships and indeed those who are left ‘caring’ for their partner, this behaviour in particular is not acceptable. In fact, it’s quite shocking. Honesty is the key yes, but blimey, this is sad and cruel. Not the people you want, or need in your life.
I appreciate this might sound easy to say, but you are or were, no less a person in your marriage than your spouse. Your happiness is just as important. Surround yourself with positive people… join the local groups, chat on the forums, exercise, keep talking. No one says it’ll be easy, but take one day at a time. Distract yourself, keep busy. Focus on you and don’t waste any more time on the negativity.
With or without PD, life is wayyyy too short my lovely.
Take care for now
hi Chris I went though very similar experience. 13 years ago I had my own business enjoyed hi adrenalin sports happily married with 3 children life was good , then the tremor in my hand started followed by the visit to the gp and then the consultant and being diagnosed with PD . life carid on for a few years after without much change but as the pd progressed I did start to change going out less and without realising it at the time are marriage started to fall apart . eventually we seperated .
After a few months of living with my parents myself and my ex decided to try again but whilst I was trying looking back I dont think her heart was in it and we seperated for good after a few mounts of trying . that was five years ago . Today I live on my own in my little flat by a park , I see my children 3 to 4 times a week ( not always perfect but life isent ) so as you can see we have similar experiences I'm sorry if this message is a bit muddled but I'm not a grate writer . so what advice can I give
how ever hard it may be take a deep breath and let the anger towards your ex and her new partner go it doesn’t hert them it only herts you and you will fill beter for it .
practice self hypnosis iv just started my self and works well with tacking a deep breath and letting go of the anger. this is not a permanent fix you will need to repeat from time to time second I would recommend a book called the seven habits of highly effective people . dont be put of by the tittle its a lifestyle changer finally dont think your alone you are not . good luck to you
Thank you so much for your email. I am struggling daily to rationalise the situation, and knowing that I am not the only person who feels hurt by this is indeed encouraging. I had begun to think of it as my fault, I not interested in who is to blame etc, but my wife having left has made me feel somewhat useless.
It has certainly knocked my faith in human nature!
I think as you say it would be a good idea to join a local group. I think if I was around people who could empathise with the condition, this may help?
Once again, thank you so much for your reply.
Sometimes @chris10, there’s no rationale behind other people’s actions! And this definitely makes the situation harder to accept. But in time, you’ll be able to deal with it and the impact will lessen.
In the meantime, like-minded people, PD people, positive people, (online or groups) - will support you on your journey… there are some still left out there. I promise!
Hello again chris10, I am so glad you are feeling a bit more positive, and yes your wife does deserve a life too but it feels so cruel to be left with the feeling that you feel useless and it is your fault. It takes a certain kind of person to take on being a carer, and some people can do it and accept it but some feel they cannot cope with being hemmed in. My husband has an outlet, he goes fishing, he has his garden and his football (watching only). Life is’nt all a bad of roses, we argue more than we used to and have our ups and downs mainly due to the Parkinsons. Yes I do have some very good friends and family, son and daughter and grandchildren, but it would be like loosing my soulmate. Then I would do my utmost to pick myself up and prove to myself that I am as good as anyone! There is still a life to be had out there somewhere so I say “Go find it, and enjoy!”
Heartfelt thanks for your reply, that is good advice indeed. It sounds as though you have had an awful time too. Just like you, I did not see this coming.
I have ordered the book, and look forward to reading that.soon.
You’re dead right about the anger because it doesn’t affect them, it just makes the PD loads worse.
Thanks once again for your advice, and for taking the time to respond.
Yes indeed, am feeling a whole lot more positive. You are all so kind, and have proved to me that good people exist.
Thank you once again.
With much love and respect,
Dear Chris, just wanted to add my experience to this. I was married for 26 years, and funnily enough, the breakdown of the marriage was actually due to symptoms of the Parkinson’s, although we didn’t realise it at the time. I was diagnosed after the divorce. I would say (as others have already advised you) to enjoy life all you can and try not to dwell on the past, that will only hurt you. Read ‘The Power of Now’! It took time for me to realise this, but we are not defined by this illness - so try to manage it before it manages you. Follow your own interests as well as joining Parkinson’s groups. Chris, there is light at the end of the tunnel, can you see it?! When you do, keep it firmly in your sights. Carpe diem!
Thank you for sharing your experiences with me. 26 years is an awfully long time. I feel for you. It’s really hard to explain to someone how you feel with PD. I think my wife just got used to my saying I feel unwell and this became the norm.
I will get a copy of the book you suggest , and look forward to reading it. There is little by way of light at the end of the tunnel as yet, but I know there has to be as I am travelling down the tunnel at some speed!
Thank you again, for your compassion, for sharing your experiences,and for your time.
Hello Chris my heart goes out to you on your marriage breaking down and actually having PD. What screams out at me from your post is depression which of course is no surprise for anyone having gone through a marriage break up. I find myself wondering if you are also depressed as part of your Parkinsons and are you seeking medical support for this ?
I cannot offer any reasoning nor understanding to your wife leaving you what I can do is tell you a little of what being a wife, now a carer, to a PD sufferer is like. My husband & I have been together for 40+ years and married for 33 of those years. My husband was diagnosed with PD 7 years ago coupled with collapsing and being hospitalised with Sepsis twice last year which culminated in 14 operations (soon to be 15 operations). I am a wife in name only now - I am now a carer full time having had to give up work to care for my husband. Neither of us envisaged this situation (no one ever does)
I find life constantly hard because I am always trying to booster two people along. There are too many sentences beginning with I here so I’ll not continue them. However the person I married has gone, he needs constant pushing to find enthusiasm in anything so not only have I lost my husband, lover, provider, supporter emotionally and physically he too has lost his wife because without doubt I too am not the same person as I was. I now have to be all things to keep our life’s operating in any level.
So ultimately I guess what I’m saying is do your best to make new friends and be involved in life because even if your wife had stayed she most likely would not be the women you remember with love. PD takes life’s away and that is not just the one with the medical diagnosis, everything changes and worries ensue from all sides including financial ones. Find positiveness where you can and reaching out is good. Ironically for my husband and I it is me gaining support from Parkinson’s UK articles and the forum, my husband doesn’t want to. As I see it you’re ahead because you’re making connections. Good luck take support wherever it comes
My situation is very similar. I was diagnosed with PD just over 2 years ago but the symptoms were there long before the diagnosis. I noticed a difference in my partner of 20 years after the diagnosis. Our relationship became a joke, physically it was none existent, she was not interested in going to any medical appointments with me, gaining any knowledge of the condition to help me manage it, she just carried on as normal like nothing was happening. Maybe this was her way of dealing with it but it came across as somebody who didnt give a toss. We have now split up. When the chips are down you soon realise who does care. We weren’t married but as good as, so the sickness and in health thing went out the window.
I didn’t sign up for this crap and neither did my partner but you’d like to think you can rely on their suppport as I would have if the roles were reversed
Thank you so much for taking the time to write. Your reply made me cry, with empathy for you both. That’s not patronising, I really feel for both of you. This really is a rubbish disease. I am hugely encouraged by the positivity people display, and have to express my deepest best wishes to you both. Thank you for your honesty and your being frank about your life.
You are right, I should see my doctor with a view to perhaps looking at depression. It’s been me and the 4 walls for two months now, think I have been out 3 times. At present I feel like I am grieving my wife, as if she has died. I feel so emotional, I loved her so much, and didn’t see anything coming.I wish I could help both of you, it must be so hard, I really cannot imagine.
She has moved on, and made the decisions she has in order to seek out new and exciting experiences. There are many many emotions involved, betrayal, lies, deceit all lead to anger, and the fact that she has demonstrated the utmost disregard and disrespect makes me feel quite worthless. She is 43, so has plenty of time in front of her.
I understand that you both effectively have PD, and that must be a dreadful position to be in given the advanced stage of the disease you describe. I wish I could offer some support. All I can say is please try to glean whatever support you can from the heartfelt wishes I send. Please ask your husband to use whatever support is out there, including this forum. PD affects your emotions, drive, reasoning, mood, and so much more than just movement, as you are definitely aware of. Please stay strong, and stay in touch too.
With much love,
I am so sorry to hear that you have experienced similar, our situations sound very much the same. I think it must just be the way some people deal with the illness, my wife blocked it from her thinking, but then she never faced her problems head on, ever.
Unfortunately you can’t just kick PD in to the long grass for very long can you.
I totally get your thinking about when the chips are down, you certainly find out about human nature having PD, and following a marriage break up, there are a huge number of emotions, none of which do you any good. In the earlier posts here, others have advised to let go of the anger, and move on. I wish I could flick a switch and turn off the feelings I had/have for my wife. Indeed if I could be as callous, it would be easy to let go of, but my feelings run deep, and my devotion was, and would always have been to my wife, that is what I signed up for, nothing less.
It is indeed a shame that you too had a partner of 20+ years. I look back with fond memories sometimes, and then other times lament that it was all a sham anyway.
PD or not, you are either a decent person or not. There are so many victims to this darn disease. I feel for you, and appreciate sincerely your reply. I do hope you are coping. I totally agree it’s crap. I can’t help but think that if I didn’t have PD, my wife would still be here. When times were good, all was okay. I have had many high powered jobs paying very well, nowadays I can’t even hold a conversation for stuttering, nerves and a demeanour that makes people think that I am stupid.
It hurts to know there are similar people in similar situations because I feel anger for you. It encourages me that you have taken the time to reply, thank you for that. I’m not being terribly supportive here, to be honest I’m a little out of my depth, but I am thinking of you, with much compassion. Please stay in touch.
All the very best to you,
Chris I’m sorry to make you cry was most seriously not my intention however I thank you for your empathy. I found your reply interesting in your description of feeling as grieving like bereavement for your wife. I feel exactly that way for my husband and I’m still here alongside him. As such part of the 5 stages of bereavement is anger and so not surprising. I feel that we’re both in our own way grieving the loss of our life’s as we knew it. That said there is another life out there and again we are both consciously making effort to be part of it, that in itself is a good move away from grieving . I learnt only today that there is a thing called positive physiology. One thing we can practise and I’m going to try to get my husband to do is before you go to bed at the end of the day is to jot down 3 things from the day that have been good for you, then jot down why it was good for you. Can be small things not necessarily large. Evidently this is scientifically proven to help with our mental well being - so going to give it a try. Good luck my friend.
Hi there Chris,
I have just come across your initial post, and the replies and wanted to reach out and say hello. I sense your utter devastation at what has happened, like a massive train ploughing into your life, leaving you feeling, as you describe so well , utterly lost and betrayed and with no sense of bearings on a world that is suddenly and traumatically so very different to how you thought it was and imagined it would be. The shock alone of something so huge happening and without warning is massive, and it takes time and determined effort to get through that, at a time when you probably feel you have no motivation or energy to do anything but hide under the duvet and wish it all away.
I am struck by the enormity of what you are having to cope with…PD on its own would be bad enough but to find yourself abandoned by the person who you thought would always be there and who has been such a big part of you and your life seems almost too much to bear. I am on the either side of the fence, as the carer half of this awful disease, and all of what Plus1 has said resonates very strongly. Where I can identify with you is in the loss of my husband to PD and associated dementia, for 90% of the time,. That , in a way, echoes the loss of your wife, and it is so very painful, like an amputation without anaesthetic. People talk of a living bereavement, and in some ways it is harder ( or at least different) to an actual bereavement because the person is still there,but not as the person we knew and loved. For you a different type of agony, in that your wife is still around but pursuing another life , driving a coach and horses through all that you took for granted and believed before about yourself and your relationship…that you would always be together, that you would be there for each other, that in some strange way there was more of a a “we” than an I and a you. But her decision to leave has blown that apart and it must be so very very hard to come to terms with…For all the kindness and support and wisdom of others, there is always that irreducible fact of no one being able to replace her, or to make good the injury you have suffered. I have a few close friends without whom I would struggle to cope, and other things help, like this forum, books, music, , healthy habits of one sort or another…all have a part to play, but so does telling it like it is, to a friend, a counsellor, the cat…the wall…whoever or whatever…just getting it out, in all its ugliness and pain can help us to begin to move on to whatever else life has to offer. I miss the man my husband was so much , and I miss the person I was when he was himself, and like Plus1 says, we have both changed. I guess that is what life does to you.
It is all too easy for people who really have no idea, to offer trite words of comfort or encouragement though there is often truth in what they say, but when you meet people who have been there themselves and got the t shirt, , the shared experience and feeling can be enormously comforting, even whilst you continue to suffer your own pain. And there will be moments when it recedes a little, and hopefully more and more of those as time goes on, until , I suppose, we “ get used to it” , though the ache and scars are always there .
That may sound a bit gloomy and grim for some, and I don’t mean it to be, but I believe that acknowledging how it is can lift a weight from our shoulders and help us to carry on and cope. The alternative is to adopt a false positivity and facade which may convince some people some of the time, but rarely convinces ourselves , though there is something to be said for acting in the way you want to be, and then you become that.
I have probably gone on far too long, but just want to assure you that there are people out here who do understand, and who can help in some way, and it will feel better in time, even if that is unimaginable right now and may feel like an insult to even suggest that possibility.
Best wishes, Pippa
@Pippa That was one heck of a post and hope that @chris10 can draw on your wealth of experience to help overcome some of the heartache he is suffering. I know I frustrate my wife but totally unintentionally and as my carer she has told me where to go on the odd occasion when things get her down. I have been tempted to walk but have no where to go and so I stay. She does have a lot to cope with as we have two house cats and they are a handful at times plus she likes to keep our place clean and spends every morning keeping on top of it. I help by hoovering which is about the limit of my help as i’m useless at anything else pus I help her when we brush the cats which again is everyday.