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In what ways has Parkinson’s changed your relationships with your loved ones?

Community Answers
  • MrsSmith5
    2 years ago

    My mom has had Parkinson’s for about 8 years. She and my dad are best friends. She is getting more dependent, freezing up, needing a walker, she wakes up quite a bit to use the restroom during the night, she is pretty much hunched over all of the time. My dad is very impatient and can be a little rude at times. Which really hurts her feelings. This summer will be the first summer without a vacation and I know they are both upset about it. I know he doesn’t mean to but he is frustrated and scared. He has his own health issues. My husband and I live with them so I do help a lot with caretaking. We are finally going to a movement disorder doctor after a year of prodding my dad. I told him he sees a cardiologist every 3 months, mom should see a Parkinson’s specialist more than that. They have excellent insurance. I think my dad is too proud to give up the reins to me so I can relieve some of his stress, I feel it’s hindering her . Going to try support groups and hopefully the movement disorder specialist will help or help all of us understand this disease. Oh my mom is 75, dad 77. After the removal of a very large meningioma my mom was put on ant seizure meds…ever since then it’s been a slow decline. This last 6 months seem to be getting worse. Keeping my fingers crossed and just trying to be living and supportive to them both. Thanks for listening. 🙂

  • doreen.hribar moderator
    2 years ago

    Thank you so much for sharing your story with us. The love you have for your parents is incredible. They are both so fortunate to have you living with them and helping out as much as you do. I’m sorry to hear of your Mom’s recent decline and perhaps the toll it’s taking on your Dad (and you as well). Your suggestions on trying support groups and a Movement Disorder specialist are wonderful ideas. If you need help locating either of these, just let us know. All my best, Doreen Team

  • dana
    2 years ago

    I was diagnosed 15 years ago at first I was pretty bad with tremors and when I had a stroke and needed help
    There was no communication between me and my husband he helped only because he felt he had too but it just tore us apart we have been divorced almost 2 years now and I’m living with my cousin and her family because I’m unable to stay by myself

  • Hunter
    2 years ago

    I was diagnosed with PD six years ago. Within a year of my diagnosis my wife became increasingly distant and non-communicative. One day she admitted that she was pulling away because she feared that I would become dependent. She had no intention of nursing me. It wasn’t what she signed up for. Although I am still very independent, and taking steps to remain that way, our relationship seems to be permanently altered. I’ve just had to get used to it, but it is difficult.

  • KellyW moderator
    2 years ago

    Communication seems, to me, to be one of the hardest parts of having a chronic disease. Everyone in my life wants a different level of level of information. Some want to know on a daily basis how I feel and if anything has changed. Others only want to know when something has changed and if they should be concerned. Others ask, but they really only want the answer that everything is fine and are not interested in the details.

    My levels of communication also differ depending on who I am speaking to. For the most part, I keep the disease to myself. It’s not that I mind sharing, it’s just (as i said above) most people just want to hear that I am fine. Going beyond that makes them nervous. I mainly share the nitty gritty with my friends with Parkinson’s that I met through support groups. We laugh about symptoms that are not really funny, we share coping skills and we understand that we are not alone.

    With my husband, we did not want Parkinson’s to define our relationship. As I mentioned in a separate post in this thread, we learned a lot about communication through attending support groups together. And, after going through a particularly rough patch, we found that our relationship had to shift from husband and wife to care partners. We still do not talk about it daily or even weekly, but my husband has become much more involved in my care and health related decisions.

    It works for us but it took effort on both of our parts to face the many faces of Parkinson’s.

    Regards, Kelly, Team Member

  • rqfenn
    2 years ago

    shifts our partnership from a simple 1 to1 to a more complex combination of dependency and open communication balancing PD related activities with the way life was before PD

  • KellyW moderator
    2 years ago

    Hi rqfenn! I completely understand how you describe your relationship. My husband and I met a few years after I was diagnosed. In the beginning, we discussed what life could look like with Parkinson’s (I was diagnosed at 29). Over the years, unless there was a need, we talked less and less about it. We did not want it to define our relationship.

    I started a young onset support group and he would attend with me. For the first time since diagnosis, I felt very open to speak about my disease because I was with others who were in a similar place. He also benefited from talking to other spouses/care partners. After one of the meetings, he told me he didn’t realize that things were changing with me and that my disease was progressing. It was eye opening for both of us.

    I went through a very rough time for about a year and my relationship with my husband changed quite dramatically. He quickly had to become my caregiver. It did, as you say, make our relationship much more complex. As things improved with me, our relationship started to shift from caregiver to carepartner. And that is where we remain. I feel it is a good place. We still don’t talk daily about Parkinson’s but he has become much more involved with my care and health related decisions.

    It has helped us to do as many activities that make us feel like a “normal” couple. We have planned trips that I may not be able to do later in life.

    Parkinson’s has definitely dealt us a full hand but we have tried our best to work through it.

    Thanks for sharing your perspective! Regards, Kelly, Team Member

  • ElkMagik
    2 years ago

    There is little or no communications.

  • lovetobake
    2 years ago

    I feel like my husband does not want to understand. He does not want to talk about it. I think he is afraid.

  • cadams0602
    2 years ago

    Less communication.

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