I have been in a long distance relationship with my partner for essentially 20 years; we’ve known each other for 35. Children and other responsibilities have kept us apart, but our relationship has been very strong, loving, and supportive and we have been together when we could be… more in recent years. We are now in our early 60s. My partner was diagnosed with Parkinsons a little over ten years ago. He’s mid-stage; lives independently, but there are things about everyday life that he is starting to struggle with.
In the past year we were finally able to really start figuring out how we could be together (no more distance). I wanted to make the move to him, and I was fully prepared to weather any storms ahead. Then some major stressors presented themselves to him: death of a very close sibling and a diagnosis of cancer. As these things are converging, he tells me that the relationship needs to be just a friendship. I did not see it coming and was devastated. The delivery of the message was also a bit mean-spirited and stern. This is not the person I have known most of my adult life. The behavior is something I had seen glints of in recent years, but not on this level. When I later offered to go to him in such a difficult time, again, I got a very harsh order to remain at home and that it was the “worst idea” ever. You can imagine how it gutted me for him to not allow me to be there for support, and pretty much sent the message he did not need me. In retrospect, I am undertsanding where some of it is coming from with all that is going on. He’s got about as much stress as one can handle under normal circumstances, let alone with Parkinsons. I feel utterly helpless and crushed.
He says he will be in touch maybe in a few weeks time and I will respect his wishes. This is a difficult thing for me as we were in touch constantly and regularly. And I am so concerned about his recent cancer diagnosis that he has downplayed.
I am only now realizing the change in behavior may be due to the Parkinsons, and need some thoughts on how I should proceed at this point when he is adamant that I stay away. We still care deeply for each other. Has anyone had this experience? What should I do next? I feel like I was pushed off a cliff without a parachute.
Thanks.
Hello Addy,
We’re very sorry to hear of your situation, and unfortunately there are no easy answers. We won’t minimize your struggle, but we can assure you that you are not alone. You are likely to hear from the community soon, as many of them have had to deal with difficult behavioral changes due to Parkinson’s. You would do well to use the search function, as well, as this will yield previous discussions on the subject.
We also have a free and confidential helpline, on 0808 800 0303, which you are welcome to reach out to, and a trained advisor will be happy to answer any questions and lead you to resources in your community. This page lists other support services, as well: Our support services | Parkinson's UK.
With our best wishes and warmest welcome,
Jason
Forum Moderator
I think that sadly you need to walk away. Unfortunately, sometimes changes in behaviour and a reduction in empathy in Advanced Parkinson’s means changes like this do happen. It is hard when a previously caring and emotionally supportive partner becomes distant and seemingly uncaring. It’s even harder when you are living and supporting the partner so in some ways it is better that you know now the situation. I think just step back and see what happens - if he makes a step towards you then perhaps consider moving in but if not, I think you should accept it as hard as it is. There is a facebook group called Partners of People with Parkinson’s and many of those partners are dealing with difficult situations like this.