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    • #20147
      Mary Beth Skylis

      Parkinson’s appears to be exhausting. And as a caregiver, I never know how to create the right balance for my Dad. On some days, I think he needs the space to rest and exist. But on other days, I think he needs a little bit of encouragement to get started. How do you find the balance between pushing and supporting? Has your strategy changed over the course of the disease?

    • #20233

      I have Parkinson’s, so I’m on the receiving side of the situation, and as much as you try there really is no exact balance, I find with my PD it’s day by day, even hour by hour changing disease, and it will depend on how your father feels at the time. Parkinson’s is exhausting, even more after a day of activity, so I know I’ll need to recuperate the day after.  If I know in advance I have something planned, like a social event or outing,I make sure the days before I’m resting, and even then I worry I may not be up to going out or getting over tired, it’s all just part of having PD. I know being the caregiver is hard, I’m sure your dad appreciates all you do for him.

    • #20236

      I have early PD and no caregiver (yet!), but it occurred to me: would a chart similar to pain charts in ERs help? They show happy faces (no pain) down to medium faces (hurts somewhat) to crying faces (extreme pain)—but could be adjusted for attitude, I’m sure. Have him point to where he’s at in a given day, maybe?

      Mary Beth, the first thing I thought in reading this was that, hell, marriages and friendships are like that too! When do I involve myself? When do I step back? When do I encourage or stay quiet? It’s a common concern, exacerbated I’m sure by the PD.


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