Stepping into the role of Parkinson’s care partner is a big change and often a significant stressor. And as time goes by, it’s easy to become so focused on your person with Parkinson’s that you put your own needs on the back burner. This can lead to caregiver burnout or in its extreme, compassion fatigue, where you become overwhelmed physically, emotionally, spiritually, and socially to the point where you’re unable to care for yourself or others.
Social worker Elaine Book recently joined us to discuss:
- Common challenges of being a Parkinson’s care partner
- Signs you might be on the verge of burnout
- Strategies for avoiding burnout
- A common challenge many care partners face and how to reduce the stress it causes
- A simple roadmap for daily mental health care
You can access the recording here.
To download the audio, click here.
To download the transcript, click here.
- Because people experience Parkinson’s in different ways, as a care partner, you face unique challenges as well
- Non-motor symptoms of Parkinson’s, such as depression, anxiety, sleep problems, and hallucinations can be more burdensome than motor symptoms
- As Parkinson’s progresses, different challenges arise, both for you and your person living with Parkinson’s. In the years immediately following a loved one’s diagnosis, you may offer more emotional support than hands-on care
- Common emotions that follow a Parkinson’s diagnosis are senses of loss and uncertainty. As time passes and medications help stabilize symptoms, these worries often ebb. Then, as your person with Parkinson’s enters a new stage, new concerns arise. “As a care partner, you’re going to experience these waves where things are going to be okay, and then something is going to change and it’s not going to be okay. And then it’s going to get okay again,” Elaine says
- Knowledge is key to maintaining mental health. Read, research, connect with others, and make your plans based on the latest information from trusted Parkinson’s sources
- You may experience “caregiver burnout” for numerous reasons. Sometimes, it’s because you have had to take on roles previously performed by your loved one. Sometimes, it’s because of excessive demands on your time and attention. And sometimes, it’s because you set unrealistic expectations for yourself and push yourself to “do it all”
- Care partner burnout can present itself in various ways. Warning signs to look out for include changes to your sleeping routine (oversleeping or not sleeping well), eating habits (under or over-eating), getting sick more often, and feeling intense emotions, like irritability and frustration, more often than usual
- To mitigate care partner burnout, reflect on your emotions and take steps to get help. Whether you choose to see a counselor or social worker, explore self-help resources, set a self-care calendar to build in “me time” each day, or take another action that brings you joy, be sure to take care of yourself
- You do not have to be everything for your loved one with Parkinson’s. Look for and ask for help when you need it. Be specific when you reach out for assistance and let people know what they can do that would be most helpful
- Think about who you could add to your loved one’s care team to help them and you live well. Would it help you both to connect with a physical, occupational, and/or speech-language therapist? Do you need to explore home-health options? Who could help with your person’s most impactful symptoms? Make a list, then reach out to members of your support group or community for recommendations about health providers in your area
- Expressive writing, exercise, counseling sessions, and meditation are just a few ways you can practice self-care
- Remember that you and your loved one with Parkinson’s are a team. Communicate, communicate, communicate. Let each other know what forms of help would be most beneficial to you and work together to make a plan.
Want more Parkinson’s care partner resources?
Get the every victory counts manual for care partners
Thank you to our webinar sponsors, Amneal, Kyowa Kirin, and Neurocrine.
*While the generous support of our sponsors makes our educational programs available,
their donations do not influence Davis Phinney Foundation content, perspective, or speaker selection.