Parkinson's and the Burden of Caregiving
Sometimes Parkinson's disease can feel like a burden, for the person with the condition and family members or caregivers. One member of MyParkinsonsTeam wrote, “I need my children to be involved, yet I don't want to burden them. I feel like a rudderless boat without a paddle.” Another member lamented that he can’t “stop thinking and carrying this burden every single minute of my life.” Members encourage each other to find support resources that meet the needs of people with Parkinson's and family members. “Find a GOOD support group and take your wife with you,” advised one member. “There’s no way she knows how you feel or what you’re going through. You can't understand what she’s going through, either.”
On MyParkinsonsTeam, the social network and online support group for those living with Parkinson's disease, members talk about a range of personal experiences and struggles. Feeling the burden is one of the top 10 topics most discussed.
Here are some conversations about feeling the burden of Parkinson’s:
- It’s hard and lonely to be a caregiver when your spouse will not tell you what’s going on.
- I need my children involved, yet I don't want to burden them… I never thought of myself as needing much help; now, I have no choice.
- I am disappointing my wife every day in one form or another. She understands, but I have to see that look on her face of love and fear.
Here are some question-and-answer threads about feeling the burden of Parkinson’s:
- Has anyone else lost a lot of friends because of their Parkinson's?
- As a caregiver, have any of you felt so depressed it's hard to keep going?
A MyParkinsonsTeam Member said:
Same here - I like your line: My job, my choice, and my duty. I'll try to remember that!
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