Being a Parkinson’s care partner can be equal parts demanding and rewarding, but no matter your circumstances or resources, there will likely be times when it feels overwhelming. Many people struggle with communication or admitting when something is too much to handle on their own, and this can make matters worse.
Key to being an effective care partner is prioritizing self-care, feeling supported by your person with Parkinson’s and having something to call your own. That’s because as difficult as it may be sometimes to put yourself first, you must first be at your best if you want to help someone be theirs.
Here are a few tips on how to ensure that you are receiving the care you need so that both you and your person with Parkinson’s have the best quality of life possible.
#1 - Take self-care seriously
The word self-care has been thrown around so much that it’s nearly lost its meaning. However, if it’s not a priority in your life, it can take a toll that’s hard to recover from.
Taking care of yourself can take many forms, but the most important step is checking in with yourself. When you feel stressed or overwhelmed, consider doing one of the following:
- Engage in a hobby or activity that you enjoy
- Check-in with your support system
- Exercise, have a healthy meal and drink water to restore your energy
- Practice mindfulness or meditation
- Give yourself a break
- Communicate with your person with Parkinson’s about how you’re feeling
- Let your emotions out rather than bottling them up, even if that means speaking to a therapist/counselor or good friend
- Be gentle with yourself and remember what is important to you
#2 - Acknowledge your limits
Find out what is possible for you to achieve and stick to it, but don’t push your boundaries. Caregiver burnout is common and is detrimental to you and your person with Parkinson’s. Be deliberate in your choices and ask for help when you need it.
#3 - Get educated but stay in the moment
Parkinson’s, while common, shows up differently for everyone. Some of the most effective care partners we’ve talked to said that it’s easy to get lost researching every possible thing that could happen; however, too much information can be dangerous. It can lead to borrowing trouble, increased stress and lack of presence. Learn how to deal with what’s in front of you and resist the temptation to project too far into the future.
#4 - Ask for help and delegate
While you might be hesitant to ask other people to do things that you typically take care of, by taking some responsibilities off your plate, you’ll be a more effective care partner. Remember that people want to help; so, let them drop off a meal, take a walk with your person with Parkinson’s or pick up your dry cleaning. You don’t have to do it all yourself.
#5 - Create “no Parkinson’s zones”
Although Parkinson’s is part of your life, it’s important to spend time together when Parkinson’s isn’t the most important person in the room. Take time to connect with your person with Parkinson’s—whether they are your spouse, parent or dear friend—in ways that you did pre-Parkinson’s. This is critical to the health of your relationship.
#6 - Encourage independence
By encouraging (and even expecting) your person with Parkinson’s to do tasks they’re still capable of doing, you keep them connected to a sense of purpose and usefulness while also relieving some of your burdens. With that said, every situation is unique. Your person with Parkinson’s may want nothing more than to keep doing everything on their own, or they may feel so defeated by their diagnosis or progression that they don’t want to do anything. Both can present challenges. As a care partner, it’s important to learn the balance between helping and enabling and between encouraging and dismissing. Maintaining constant communication can help you know which path is best at any given moment.
#7 - Let the little things go
Not everything will continue the way it did before Parkinson’s was a part of your life, but focusing on the big picture will help you take care of yourself, your person with Parkinson’s and your relationship together.
#8 - Establish and maintain consistent routines
Including order and regularity in your life will help you to deal with stressors and unexpected circumstances as they arise. Parkinson’s is continually changing, but having consistent routines can make those unexpected moments and unplanned detours easier to manage.
#9 - Develop your care team
Parkinson’s is part of your life, too, so take time to develop a support system of people who will help you through this journey. Invite friends, family members, physicians, therapists, social workers, support groups, spiritual leaders/clergy members and/or volunteers into your life to help you maintain balance and get the care you need.
Remember, most people will live a very long time with Parkinson’s; so, it’s important to stay connected to what you want and what’s important to you while you’re on this path as well.
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Additional Resources for Parkinson's Care Partners
If you or someone you know is a care partner, here are a few of the resources and content we’ve created for you.
Advice for Parkinson’s Care Partners
How to Build Resilience While Living with Parkinson’s
Rewriting the Rulebook for Parkinson’s Care Partners
Parkinson’s Care Partners: Rewriting the Rulebook
Care Planning for a Parent Living with Parkinson’s
How to Stay Healthy and Avoid Burnout as a Parkinson’s Care Partner
How to Be the Parkinson’s Care Partner Your Partner Needs
The Parkinson’s Care Partner Digital Toolbox
Sexuality and Intimacy for People with Parkinson’s and Their Care Partners