I want to share my story here and would be grateful if you could give me some advice or share your feelings as well.
I have known my partner for 7 years and we’ve been in a relationship for 3 years. He was diagnosed with young onset PD in 2018, it’s getting worse over time. We have a big age gap and are not living together, but we love each other and are happy to live at the moment, although we both know the future will be uncertain for us.
We discussed the possibility of moving in together, but today he told me that he wants to end this relationship, because he loves me too much and doesn’t want one day things get bitter when I take care of him most time. He thinks I am young and can achieve so much more without the burden of him, but this really hurts me, we love each other, with the uncertainty and progress of PD, he decided to leave me for my best benefit. It’s too much to take in, I really hope the miracle happens so that PD can be stopped or cured, so we and our loved ones can have a normal life together.
I read a few posts about the difficulties of being PD carer, the whole thing is difficult and will get bitter at one point. But me and my partner haven’t even tried moving together yet, I told him we need to try before making any conclusion, but he just told me he’s a dead end to me, my heart sinks. Sometimes I think the disease is so unfair to both of us, as we could have a happy life together without it. Yet we decided to live at the moment, but now everything finished, I’m lost, I don’t know when I will be able to move on, I don’t know what’s my next step for the life, I love him, and now it hurts so bad.
Please comment what do you think about this, do you have similar experience? Or simply just share your feelings of the hard time and how you try to move on with it.
Hi and welcome to our forum, @Lu. This is incredibly sad and we know your heart must be breaking. While we have no way of knowing how things will go with time, we do know that what you’re experiencing isn’t uncommon. I hope that our other friendly members will be along to add their thoughts and stories very soon.
I’m sure you won’t be surprised to hear that relationships can really struggle when one person has Parkinson’s. In fact, we have a whole section on our website that deals with this: Being in a relationship | Parkinson's UK. There’s even a section about relationships ending, which you may find helpful. This is an overwhelming time for you and it’s so important to be good to yourself right now. None of us knows what the future will bring but we’re here for you.
You can reach our team on 0808 800 0303 if you need to talk.
Forum Moderation Team
Thank you Janice, I was feeling very isolated and overwhelmed by the breakup, but the relationship section does make me feel better. I think the future is daunting for both persons in the relationship, but I still hope with open communication and positively seeking and trying new treatments, the relationship will be able to carry on one day…
It was both very sad and heartbreaking to read your post and it is difficult to know what to say without it sounding trite.
I too have Parkinson’s and if I may, I will try to explain why he may have made this decision and I hope I am not putting words into his mouth - it is only my view of his decision. Nobody knows what the future holds, life is what it is and if an unexpected life changing event happens like a stroke or car accident for example, most people will find ways to accommodate that in one way or another. Living with Parkinson’s is not like that. Like everyone we don’t know what the future holds for each of us but it does come with one certainty that others don’t have and that is it’s a chronic condition that will deteriorate over time and for which (at the time of writing anyway) there is no cure. It’s not an easy thing to carry, knowing that at some point in the future you may be the cause of great anguish to those you care about most. It seems to me that your partner has given a great deal of thought to this dilemma and made his brave decision to protect you from what might be a very difficult relationship in the future and possibly because he doesn’t want you to see him in the advanced stages when he might need assistance with the most basic of tasks, such as going to the toilet.
Whilst I can understand it (and I hope there is at least some accuracy in what I have written) there is at the moment a huge might/maybe about your circumstances and you could argue that he is pre-empting something that might not happen. The deterioration in most people with Parkinson’s is slow so there is time to adjust and adapt - or to use your circumstances to make decisions about your relationship at an appropriate time.
What you do about it has to be your decision. If he is adamant you may just have to accept his decision - the feelings you described are true, I think, of the end of any relationship which leaves you broken hearted and it can feel like life is never going to be normal again; in time however you will find you can and will survive this most difficult of times. If I am reading it correctly I am inclined to think you may be able to box clever and enable him to see his circumstances in a different way by using my view that he is not yet at the point of being badly affected, that there will be time to adapt and adjust and that you can therefore re-evaluate your relationship as needed as time goes on. I’m not sure how clear that is, it is quite difficult to write it down, but I hope you get the gist.
I think however that you do need to understand that taking on the caring role is not an easy thing, not everyone is a natural carer and many underestimate how hard it can become. It is worth keeping that in mind if you can come to some arrangement and remember you can choose not to continue with the caring role, if it gets too hard.
I hope I haven’t spoken out of turn or assumed too much especially with the extreme emotion you are currently feeling, but I can only write how something seems to me when I don’t know you and I hope that it may in some small way, help
I send my best wishes to you both.
I actually do understand what you are going through.
A good friend of mine, went through a very similar situation.
Her boyfriend was diagnosed with fairy bad cancer and while in hospital he told her that he didn’t want her to visit him.
She was devastated, as she really wanted to be there with him.
I asked him what the hell he was thinking and did he realize how much he upset her.
He said he did know, but as with your partner , he loved her so much that he could just not bear her seeing him like that and what it would do to her.
He eventually went into remission, but when he tried to explain to her why he did it, she refused to accept it as she said, he obviously did not trust her enough to have her be with him. It took some time but they are together again.
You are in exactly the same situation, it is very difficult.
You stated that he was diagnosed 5 years ago now and it is getting worse.
I used to consult to organizations like life line, and do consult to PD sufferers and their families now.
I really do totally understand your feelings, but I do know when I get to a stage when I cannot take care of myself I would never accept being a burden to my family, I have seen what happens to families and loved ones.
I can see how much you are hurting, but please try to see it also from his point of view.
I really do believe that once he has " worked this through’ in his mind, you will get closer again but definitely not what it used to be.
Please talk to us on the forum whenever you feel overwhelmed, you will always find people to help.
Thank you for explaining his decision from your point of view, I’m really touched and grateful for your reply. He didn’t say much about his decision, which made me shocked, heartbroken, lost and even angry at one point. My friend said it was selfish for him to leave me suddenly without asking how I feel about it or discussing other possible ways, especially during this critical time in my life (we will become long long-distance relationship for a while due to external difficulties). I didn’t understand why he added another life change to me in my most vulnerable time, the time I really needed him to be my side and provide some emotional support. I can never think of him being a bad person or hurting me purposely, but this sudden decision made me lost, confused, and hopeless as even last week he reassured me we would try build a future together. He told me he wasn’t brave enough to tell me his decision last week, and he’s been thinking about this for a while. I tried to understand it from his side, but still, it hurt me badly.
Maybe he thought the same or similarly to you, but didn’t have the courage to explain to me properly. I am grateful to you for clearing up some of my confusion and providing a way which may help this relationship.
Thank you Tot, I don’t know what challenges time you’ve been through but you are very kind to share your thoughts with me. I’m sorry for my bad written English, I am really touched by your words and maybe it’s the unspoken answer I hoped to hear from him.
I wish you all the best and please take care yourself.
Thank you for sharing your friend’s story and showing your empathy and understanding to my situation. I didn’t expect how much support I could get from the forum community, I was just too broken and desperate to talk to anyone. I was feeling alone and sad to be trapped in such situation where I could not do anything to make it better, but now I can see there is huge support and strength that I can get from the Parkinson’s UK community. I still cannot help crying a lot, but with kind people like you, Tot and Janice, I think I am already start healing and I know I can always get strength to move on, being a member of this supportive community.
Thank you and all the best,
Hello Lu and thank you for your reply. I am glad you felt I was able to help a little. However please bear in mind it is only my view of how your partner may have been thinking and although it makes sense to me and I can well understand his decision if what I have written is even half way accurate, his thinking could be entirely different. I do think however you can now find out a bit more about what prompted his decision and hopefully find some common ground so that the relationship is not lost. I would be interested to know how you are getting on when things are a little clearer and as CliveV has said the forum is here if you feel overwhelmed or indeed for any other reason if it helps.
Crying is one of the most cathartic things you can do.
It releases tension, both physical and mental.
Please don’t take notice of anyone who feels they have to give you their profound take on what is happening to you and how you should handle it.
It is happening to you and not them, you are the expert in how to handle it.
And, again, as we all have said, please, please just vent whenever you feel the need on the forum, we all have been there and done it.
I am so sorry you find yourself in this situation. Having read the replies, I find the only meaningful advice I can give you us to seek help for both of you from an experienced trained counsellor. The helpline may be able to signpost you to someone with sufficient training and knowledge. This would be a way forward for both of you whatever the outcome.
Remember that we all have our own agenda when our lives have been affected by Parkinson whether as carer or pwp. It is for you to find your own way through with the support and guidance of professionals.
Whatever the eventual outcome I wish you well both now and in the future
Much love to you.
Thank you for your reply and advice. My partner is not the type of person who would go to see a counsellor… He took a lot in himself, even though I advised him to talk with me or friends so he may feel better. He read the forum before as well, but he found it’s too depressing for him, so he just spends most time dealing with PD alone, although he still actively participates in clinical trials and consults his doctor regularly. If needed, I will seek help from professionals in the future…
I agree with you that everyone has their own agenda in life, even if we think we are the closest families or friends, we still need to respect each other choices eventually no matter whether it’s what we want or not… I know it’s easy to say, hard to do, but I will try to understand it.
I’ve just been sent a link to your post about your relationship and as a newly diagnosed pwp I can see why your partner is feeling like cutting you free from the difficult journey ahead. As I process the news of my own diagnosis I recognise that the prospect of becoming a burden on those we love is a big issue.
I just wanted to share that as someone who also has a caring role (my sister has MSA-C) the post diagnosis period is full of emotional difficulty - sometimes to extremes. I’ve felt myself being rejected at times and wondered why she sometimes wants to push my away and deal with things herself while she still has the agency to do so.
Her husband was on a similarly debilitating journey as he was diagnosed with Alzheimer’s almost in parallel with her own condition. Here was a truly tragic situation - she becoming more physically dependent as he became more unable to help her. They have now parted and he has gone into semi-residential care back in his home country of Australia. What struck me was that their love was unfaltering - they neither of them wanted to part company - but they knew that their future together wasn’t going to work. In some sense they wanted to hold on to the memory of their best times and to be thankful for that whilst not wanting to see each other fall deeper into their illnesses.
At the time it was the biggest cause of anxiety and hurt - more than the news of their own future dilemmas.
Now, 2 years on, and my sister is in palliative care and her daily challenges consume a lot of her energy. Although still at home she has a live - in carer and can still maintain some form of loving exchange with her husband online using zoom or FaceTime. It’s nothing like their former life of course and distance is a huge factor here - but they are both keeping their love alive and look forward to their online ‘date’ every week.
I accept this is a very different story to yours and I hope you don’t find it an insensitive response to your own situation. I guess I can very much sympathise with your partner’s choice to set you free - I’m having very similar thoughts myself. But perhaps patience and time and understanding might move you to a different kind of relationship rather than the end of it…?
In my experience true love finds a way.
How are you getting on? I see Jon has posted a reply to your post. I sent the link because he seemed to be struggling in much the same way as you although not at the point you are. You wrote such a powerful first post, it seemed a shame not to use it to maybe help someone else on the forum. I found his reply most interesting and although the circumstances are radically different, it was heartening to hear that his sister and her husband are in a way, still together in any important sense of the word. I hope you and your partner have been able to do some honest talking and I don’t know what the future will be for you but whatever that might be, it would be nice if the two of you could end up as his sister and brother-in-law have done - still together even when separated by distance if that is what you ultimately decide. However as I said when I replied to your post that is for the right time in the future, not now and I hope you and your partner are making progress. I also hope you are ok as I remember your saying yours will become a long distance relationship which will bring with it other challenges. Given all that you’ve got going on I do really hope you are feeling a little less desperate now about your relationship so that you have the strength and energy to manage it as it becomes a long distance one.
Hello Jon I read your reply and despite the circumstances found it uplifting. I truly hope that Lu found it the same and that reading her post may have helped you see your own circumstances a little differently. I think many of the replies to her post could be applied to your own circumstances. I do hope it helped.
Thank you Jon for sharing your sister and her husband’s story, and thank you Tot for following up on me. Now I am back in my own country which crosses a few hours time zones with UK, last week life was busy with families and overall my mental status is better than before.
Before I left UK, I had another face to face conversation with my partner, and it cleared my confusion. He said that he had been thinking about it for a few months, but was very diverted every time. My partner didn’t intend to tell me his decision during my last week in UK, which was already a very emotional period for me, but he didn’t want to tell me only via phone, and he was afraid I would build my future around him and desperate back to UK only for him, he thought I should go for my own life and explore many things which he cannot do with me due to PD.
He expressed his love to me and the only reason for his decision is he doesn’t want to be a burden to me in the future, just like Jon’s sister, he would like the best memories to stay without falling into a difficult caring routine. We agreed that we would still keep in touch, I can still express my love to him, and he will continuously support me as a friend, but he wants me to go for my own life fully, and I won’t be obligated to be his partner. I know the love is still there, but changes into a different form. I asked him to let me know if his condition gets manageable one day, or any new treatment works well for him, or if he changes his mind, I will be there waiting for him, I will still be his lover…
We still message each other, without explicit love languages, but I know the love is there and much deeper than before, I am and I will continuously hold my belief, that things will turn out to be good, and we will fight against PD until one day we can freely love each other again…
I can hardly believe I am speaking to the same person. From being totally heartbroken and lost you have made the brave decision to give your partner the space he needs to sort out his own feelings and what he truly wants. In the meantime you can still be there for each other and I wouldn’t be at all surprised if you find your relationship has reached an even deeper level of understanding because of the honesty of your recent conversations. I am very conscious that this does not resolve everything for either of you and I hope that you will be able to draw strength from this very special friendship you share that will help both when going gets tough.
I send my very best wishes to you both.
I do hold a different mind compared to when I first heard about his decision, I have been reflecting on this relationship and trying to think from his side as well (thanks to the kind community here sharing your opinions, advice and stories with me). I apologised to him that I should have considered his plans and feelings as well, it’s not an easy decision for him, it hurts him the same way to me, but he knows his situation the best. I will continuously love him the way I can, it’s difficult compared to before, but I don’t him to suffer from any sense of love guilt which he thinks he has caused me, he did the best for us at this stage, if anything changes in the future, we will keep options open and find a way.
I learned that love is not about “why you do this to me? why do you hurt me?”, but learn to really care for each other, think from their side and situations, give them space and time as an individual who has their own problems. Like how Jon said, true love finds a way and maybe just transfers into a different form, but it’s there.
Thank you Tot for your warm wishes and continuous support to us.