Angela Robb is a 25-year wife and care partner for her husband Karl, diagnosed with Young Onset Parkinson’s Disease (YOPD) for over 30 years.  Here’s a short article Angela wrote on self-care for PD caregivers, recently published on the World Parkinson Congress blog. 

WPC BLOG: LIVING WITH PARKINSON’S, ADVOCACY

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SEPTEMBER 27, 2021

CREATING A SELF-CARE PRACTICE WITH A TOOLBOX, FLEXIBILITY, AND SELF-LOVE
My self-care journey started with a realization: I had no idea what self-care was or how to create my own self-care plan. I knew I could take care of myself: feed, clothe, water, etc. but self-care is more than that. Self-care is a practice. A practice which takes patience, trial, error, and a lot of attention. It takes a commitment to ourselves.
I want to share with you what I’ve learned as a Parkinson’s disease care partner for over 25 years. I hope by sharing my experience with you, it helps you on your self-care journey.

I’m Doing the Best that I Can, with What I Have
During the U.S. pandemic lockdown (Spring/Summer 2020) my self-care routine was obliterated due to grief and sadness! Our dog passed away unexpectedly on March 8th. We went into lockdown on March 13th with no more in-person workouts at my gym and no more Rock Steady Boxing workouts for my husband. My meditation and Reiki practices were replaced with stress and anxiety. After a couple of weeks of struggling, an old familiar mantra made a reappearance: “I’m doing the best that I can, with what I have.” It is my responsibility to help myself to do the best, with whatever I have. It’s a mindset! One that has a lot of forgiveness and self-love.
Here are some examples of what “Doing the best that I can, with what I have” could mean:

• Giving yourself a break and stop listening to that “inner critic” – that voice that always has some kind of negative input that you really didn’t ask for.  
• Don’t waste time comparing yourself and your loved one’s journey to others. Everyone’s care partner journey is different. No two people are going to approach caregiving the same way.
• Put away “perfection” as a marker to judge yourself as a care partner. Perfection is not the objective. Stop running after the illusion of perfection.
• Ask yourself “What do I do well?” No matter what the size, take a moment to be proud of your accomplishments.
• Forgiveness is an important self-care tool. Stop dragging your self-imposed guilt around and beating yourself up.
• Be flexible. Every day, living with Parkinson’s, is different. As a care partner, Parkinson’s affects your life, too. As much as you can prepare for the day ahead, the unpredictability of Parkinson’s is always present. Flexibility means being able to roll with the changes. Rigidity causes more stress, and no one wants more stress!
• You do have choices. From the moment you wake up, until you go to sleep, you have choices.  Your choices can affect your mind, body, and spirit. Your attitude dictates how you approach your day.

Choice of Self-Care Tools

• Finding the right tools for your self-care is vitally important! Don’t expect that these tools are going to fall out of the sky and into your lap. I’m always actively looking for self-care tools. I’ve never, and will never, stop looking for self-care tools that fit me. My care partner journey started when I was 25 years old, when I married my husband, Karl. Karl was diagnosed with Young Onset Parkinson’s disease, 5 years before I met and married him.
• Do keep in mind that someone else’s tool may not work well for you. Factors like age, gender, and the type of care partner role you have, can all be factors in what type of tool you choose. Don’t stop looking for tools just because you tried one and it didn’t fit you. Be ready to change tools as your caregiving role evolves. If a self-care tool does not fit anymore, you can change your mind.

Here are a few examples of tools I have in my toolbox:

• Listening to music.
• Calling a friend, I haven’t spoken to in a while.
• Participating in a counselor led, caregiver talk session.
• Making cookies.
• Spending time in the garden.
• Taking a few moments for a meditation practice via my smartphone app.
• Attending an online yoga class.
• Connecting with fellow caregivers via Zoom support group meeting.
• Watching a Brenѐ Brown TED Talk.
• Taking a long walk around the neighborhood.
• Buying myself some flowers.
• Giving myself a Reiki self-treatment.
• Listening to an Earl Nightingale radio episode on YouTube.
• Watching a comedy show on Netflix.

Let me leave you, with these final thoughts:

• Be kind to yourself.
• It is OK to re-write your self-care plan occasionally to meet the day’s challenges. If you are constantly re-writing, you may need to re-visit your self-care approach.
• Each moment, each day, is a new opportunity to do something, for your self-care. Even the smallest act of self-care can have huge benefits!

Angela Robb is a 25-year wife and care partner for her husband Karl, who has been diagnosed with Young Onset Parkinson’s Disease (YOPD) for over 30 years. She and Karl co-authored the book, Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit. She is a co-editor at ASoftVoice.com, a contributor and community team member at ParkinsonsDisease.net, and a Reiki Master. She has spoken at past World Parkinson Congresses.