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    • #24789
      Mary Beth Skylis
      Moderator

      Parkinson’s is such an enduring disease that it can be difficult to predict its outcomes. Every day seems to be different for my dad. And I’m not always sure what the best way to support him through his journey is. Does he need me to make him breakfast? Could he benefit from an extra nap? Dad does a pretty good job of handling his needs on his own, but I always want to look for ways to support him. 

      What is the best way to support a person with Parkinson’s?



    • #24898
      Christine
      Participant

      Recently we had a family gathering, and there were some people there that I hadn’t seen since before I was diagnosed – 7 years ago! Not even once did they say anything to me about Parkinson’s, except a general How ARE you? I found this very frustrating, and weirdly hurtful. After everyone went home I mentioned this to my husband, that they hadn’t acknowledged my PD, or DBS surgery, or anything. My husband then told me that they had asked him about me, so he had told them basically everything I have gone through in the past few years. I would’ve much preferred if he had said – go ask her! It’s her story to tell!

      So, I guess that is how I’d support your dad, ask him about it.

    • #24899
      Gil Williams
      Participant

      My wife has had Parkinson’s Disease for about 4 years now. She is able to do some physical exercise and stretching which helps to alleviate the symptoms. One of the things that seem to help her spirits is to simply “listen” . . . not give answers but listen and tell her what I hear her saying. I also do not treat her as a “victim”. Physical contact . . . I hold her and not just when asked to. Humor seems to hit a sweet spot too. One can live with Parkinson’s Disease and find joy in each day. Too much focus on the negative kills the spirit.

      • This reply was modified 2 weeks, 4 days ago by Gil Williams.
      • #25023
        JB
        Participant

        Great reply Gil, I totally agree with humor and hugs…. sometimes nothing is needed to be said.  I could definitely try to do better on that with my husband, more laughter, more smiles….  making life lighter instead of controlled by the ‘beast’ so to speak.   Plenty of JOY in each day absolutely.

    • #24902
      Marlene Donnelly
      Participant

      Gil Williams, your wife is a lucky woman, as am I.  I was diagnosed 11 years ago, and my husband has been my rock.  He knows that my appetite is not what it used to be and I tend to get tired by late afternoon, so he has taken over the job of preparing dinner on a regular basis,  Since he is by far a better cook than I am, we both benefit with his delicious meals!  Otherwise he lets me decide what I can and cannot do, which will vary from day to day.  I need to speak up and tell him if I need help or need him to do something, but whatever I ask of him, he does.  With those conditions in place, we then just go along and live our lives, having fun and focusing on what’s really important like family, friends, and activities that make us useful and happy.

    • #24904
      Barbara Ernest
      Participant

      Trying to keep them safe while allowing them freedom to do the things that make them happy.

    • #24905
      Beth T Browne
      Participant

      I wish my son and daughter understand. They are both very good to me in many way. My son lives in WA and my daughter about 20 minutes away.

      This year, I have seen my son once when he was here to attend a special show in La Jolla. He did spend time with me most of the time and we even went to the show with him.

      What I am experiencing from him is that he doesn’t appear to acknowledge at any time, I have Parkinson. He doesn’t ask any question either by email, which I hear from him daily, or by phone, or when in person. It strikes me that he thinks I am the same person with no disabilities. I am aware he does not handle sickness with anyone well. He doesn’t like talking about it, or communicating about it. I try to be understanding about this, and I pass doctor info through emails. If the report is good, he acknowledges it, but if isn’t good, I get “I am sorry.” He doesn’t want to hear details.

      My daughter, teaches part time. She never calls to say hi mom, how are you today. But lately I had a painful UTI, and told only her via email. She responded with I am sorry, and the next day with how are you. She was with me when I was diagnosed 4 yrs ago, and never said a word when we left or even later. I never got a hug. I am wondering what I did in raising them that seems to be so difficult for them to acknowledge me and my issues. They are successful adults, 63 and 64. Healthy, I might add. I think for my son that he just not deal with sickness well, but my daughter, I don’t think that is the problem. Even my adult grandchildren never call to say sorry to hear about your Parkison’s. Am I being too sensitive? Perhaps, but nevertheless it hurts.

      • #24906
        William Palmer
        Participant

        Beth, it doesn’t seem healthy for your children and grandchildren to ignore your Parkinson’s. I would feel deeply hurt and confused also. Please consider seeing a therapist to explore this issue. My therapist has been helping me during my PD journey.

         

        • #25000
          Sherman Paskett
          Participant

          Beth, Having been both a caregiver and now a care-recipient, I suggest you try to look at the situation from their perspective. It appears you are living independently. You seem to be high functioning because you participate on this forum. You probably appear quite normal when the meds are on, which probably accounts for most of the time they see you.

          Denial is a survival mechanism. We all do it. When you told them of the diagnosis, unless they were already familiar with PD they probably did not know how to react, so they did not react at all. They went home, read Wikipedia, thought “So that is what will get Mom.” Later, they may or may not have had the private discussion every child hates about what to do with Mom when she can no longer live independently, then hoped that day never comes. I would not interpret their lack of response as not caring but rather not knowing how to respond.

          You are part of the equation: you need to decide how you want them to react, then you can try to stimulate that reaction. If you want awareness from them, ask one of them to go with you to the next appointment with the neurologist. Sit them down at the computer and have them watch a few Youtubes about the effects of PD. There are some excellent videos out there and sometimes hearing it from someone else can make a difference.

          People who are not accustomed to discussing deep feelings have to be coddled and sometimes dragged along the way to get to the point where they will open up about what they are trying to deal with. They may react with “I’ve got problems of my own,” either expressed outwardly or just held inside. Whatever you do, tread carefully unless you are certain how they will react. You know them and your relationship with them better than anyone else so you should be able to steer them in the right direction. You suggest your relation is fairly close with them, but you may have to coerce them into a frank discussion of what the future looks like. For everyone’s sake this will go better if you are an active participant. Don’t wait until you cannot be part of the decision.

          See if you can find some counseling through a local PD support group. Your neuro should be able to provide you with some contacts.

    • #24909
      Roy
      Participant

      <p style=”text-align: left;”>My hubby, Roy says the best way to support him is by being patient and speaking kindly. I tend to repeat myself when I give a direction, sounding more irritated each time. “Honey, move your left foot, please.” “Roy, move your left foot here, honey.” “Roy, are you listening to me, move your left foot here!” “Dammit, Roy you’re going to fall over! Move that damn foot over here right now!” Meanwhile, the poor guy is frozen to the point he can’t even tell me he’s frozen and I’m getting irritated at him. When he is able to speak and move, hopefully before he keels over, he always starts by saying, “I’m not ignoring you on purpose. I was frozen. Please calm down.” He’s so sweet and I can be a witch. I am trying to say this to myself when I feel the anger rising:</p>
      You have been given a challenge.
      You choose the amount of effort to give.
      You reap what you sow.

      • #25024
        JB
        Participant

        Roy, I relate totally on what you have said regarding in reality, putting yourself where your other half with PD is at.  I am working hard on doing this, because we tend to forget that ‘patience’ is oh so necessary with people with PD.  I am a very impatient person, but have been learning in leaps and bounds that ‘patience, understanding and ’empathising’ with each situation is the only way for calm.  Oof what a learning curve……  you DO  ‘reap what you sow’..

    • #24943
      Sherman Paskett
      Participant

      First – learn all that you can about the disease. We were caregivers once and knew nothing — how helpful it would have been to understand what our patient was going through. Now my wife is a caregiver again, but I have changed roles to patient. It is much easier to be a caregiver, and we thought we were going through a tough time then.

      This year is a big year of change for me: I am losing mobility. I have nearly given up driving, only taking short trips when I know the meds are fully on and should last until I get home. Arthritis and chronic back pain are the icing on the cake and complicate everything. My dear companion of 44 years is supportive to the point that I worry about her health. So, the second thing a caregiver needs to do is take care of themselves.

      And the third item I would suggest is to give yourself a break once in a while. Give yourself a few hours off now and then. Neighbors and friends will gladly give you some of their time so you can go out for an evening, or even hide away in the bedroom for a nap if your partner cannot be left on his own.

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