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A Carepartner’s Journey

By Angela Robb

Angela Robb

Angela Robb is a carepartner for her husband, Karl, who has young onset Parkinson’s disease.  She is an advocate for Parkinson Disease (PD) issues as a State Director for the Parkinson’s Action Network (PAN) in Virginia.  For the last 10 years, she has facilitated a PD support group with her husband. She is a certified Reiki Master and teaches Reiki to people with Parkinson’s and their carepartners/caregivers.

I’ve never known my husband without Parkinson’s disease (PD). He was diagnosed 5 years before I met him, at the age of 23.  We have been married for 15 years. I love my husband, but I do not love Parkinson’s. We acknowledge PD is part of our life, but not the entirety of our life.  Acceptance does not mean giving in, it means being prepared for the road ahead, wherever the journey takes us. My husband and I decided, from the very beginning of our relationship, that we are partners in this journey living with Parkinson’s. I’m a carepartner.

Importance of Self-Care

For many years I operated with the belief that carepartners needed to take care of themselves so they could care for their loved one with Parkinson’s.  Last year, I had a personal realization about this phrase. What I learned is this:  “I need to take care of myself for me, first,  not  just so I can take care of my loved one, but for just for me.” When I’m caring for myself just for myself, my self-care feels more empowering. It takes on a different meaning – it’s richer and more significant, resulting in a better me and a better carepartner for my husband.

It’s so easy for us to put ourselves last on the “care list.”, but it is vitally important to resist this impulse. It’s important that you listen to yourself and be willing to ask “How am I doing today?” or “How am I doing in this moment?” Being aware and listening to yourself is key. Here are some sample questions you can use to start:

  • How do I physically feel today? Are there areas which need some attention?
  • How balanced do I feel mentally today?
  • How much time can I make for myself to meditate, exercise, <insert your activity here> today?
  • How can I best care for myself today?

Tools in the “Toolbox”

Carepartners/caregivers need to have self-care tools in their toolbox to ensure that they are getting the care they need. If you don’t have a toolbox, take 10 minutes and list what tools you use for self-care: exercise, support group, meditation, counseling, respite care, etc. How often do you use these tools? Can you adapt your tools to fit what you need today? Do you periodically assess tools to see if they are still applicable? You may need to adapt the tools over time to fit your changing needs.

Follow your dreams

Since the progression of Parkinson’s is unknown, we decided to grab the bull by the horns and not wait for retirement to follow some of our dreams. I’ve heard many carepartners in support groups speak about losing their dreams or plans because of a diagnosis. Don’t let the disease take your dreams away from you! Alter or make a course change for your dreams but live life fully with Parkinson’s or whatever your friend or family member is living with. Accelerate your timeline if you are concerned about the uncertain future. Take that trip, spend time with your family, whatever your dreams, take control and achieve your goals!

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