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A Discussion with Parkinson’s Disease Care Partners

What does it mean to be a Parksinon’s disease care partner?

Being a care partner for someone with Parkinson’s disease (PD) is a whirlwind of challenges, responsibilities, setbacks and victories. It is a very difficult, but potentially very rewarding role. Knowing that many of you reading this are trying to navigate the complexities of being a care partner, we thought it would be helpful to  hear from others in your situation. If you haven’t already, you might find that reading our Becoming a Care Partner overview will be helpful as well.
For today’s blog, I spoke with three care partners to bring their unique perspectives to our readers who might be grappling with similar issues. Remember, every person with PD is different, their disease progression is different, and each care partner is different – so keep that in mind as you read on. But despite those differences, we think you will find helpful advice, bits of inspiration, and some solace in their stories. All names have been changed for privacy.
 
Q: What is the most gratifying part(s) of being a care partner for someone with Parkinson’s disease?
Ellen: We have developed a deeper connection and bond. I have also grown personally by taking an active role volunteering with APDA.
Gary: We live with Parkinson’s disease together. We are continually adjusting to this new norm. One priority is a daily exercise routine.
Brenda: I find that the most gratifying part of being a care partner is the intimacy that occurs in providing necessary care for someone you love.
 
Q: What is the most challenging part(s) of being a care partner?
Ellen: Staying patient and positive. It is difficult to know when to push him and when to back off.  I want to continue to challenge him, but it is sometimes difficult to know what he is capable of.
Gary: Anticipating my wife’s needs to keep her safe on a 24/7 basis…I can never let down my guard.
Brenda:  I would say there are three things that I find the most challenging: 1) Being responsible for EVERYTHING. I still have all my responsibilities from before PD and now I also have to do EVERYTHING my spouse once did. 2) Knowing that I cannot cure or stop my spouse’s disease and I can’t take away his pain. 3) The loneliness of my spouse’s unavailability to share and discuss issues – especially as the dementia increases.
 
Q: Do you get help from family, friends, neighbors?
Ellen: My husband is pretty self-sufficient, so I do not feel the need to ask for help at this point.  He is ambulatory but struggles with balance. Fortunately, he does not fall. He has had some mild cognitive decline and I worry most about that.
Gary: Yes, they are always available in any circumstance.
Brenda: Yes – we are blessed with WONDERFUL FRIENDS and some family members. They check in and do what they can.
 
Q: What keeps you going in the tough/challenging moments?
Ellen: Remembering to take a breath and physically give myself some space. I try to find some humor in moments. And

Content provided by the American Parkinson Disease Association