Caregiver Corner: Tools to Help You Cope

Whether you care for someone who only requires help with basic tasks or for someone who requires daily physical care, utilizing the proper tools can help care partners provide the best support for their loved one with Parkinson’s disease (PD).

Think of caregiving as a home: when you move into a new house, you furnish it, make it a place you feel comfortable in and invite your friends and family over to celebrate. Moving into this new role as a care partner requires a similar level of rearranging. It will take time to get used to the new normal, but you will feel that comfort again. The first step is to learn what coping skills work for you.

Research shows that care partners face risks to their own emotional and physical health, which is why it is vital to prioritize coping tools to address the stress associated with caregiving. Examples of declined physical health in care partners include higher incidences of heart disease, high blood pressure, decreased immunity to sickness, anxiety and sleep deprivation.

By exploring ways that help you identify and relieve stressful tasks, you have the capability to create a better space for you and your loved one with Parkinson’s. As with building a safe, happy, and healthy home, it can help to establish the below coping tools early on:

“Seek out others who are walking this same journey; you are not alone and need to be able to share honestly and openly with someone who can really understand what you are experiencing.”

– Virginia DeWitt, care partner, Team Spark Support Group Leader, Grand Rapids, MI

“Keep active and be happy with what you are able to do rather than looking at what you can’t do.”

– Myra Hirschhorn, former care partner, Cherry Hill Parkinson’s Support Group Leader, Willingboro, NJ

“I would encourage someone to PLAN ahead but to LIVE in the moment. Each day is so unique, and each moment can be joyous or difficult. I would also remind each new care partner that ALL emotions are valid ― even the ones commonly viewed as negative. They are each allowed to feel exactly as they need to in the moment.”

– Celeste Harris, Houston Area Parkinson Society Caregiver Support Group Leader, Houston, TX

Identify stress triggers. A first step in coping with stress is identifying and acknowledging the causes. Identify the moments that cause tension as a care partner and determine how you can make that task or time of day easier.
Connect with other caregivers. No one will understand your experience as well as other care partners. Join a support group for care partners to learn other methods of caring and how to better cope with the role of caregiving.
TIP: Register for our 2020 Care Partner Summit to hear experts discuss caregiving, coping mechanisms and connect with other caregivers.
Acknowledge your right to feel what you feel. It is okay if you feel grief, anger, anxiety, guilt or depression. Seek out someone you can talk to, whether a professional or a friend.
Seek out activities that bring you pleasure. Do the things you love. Read a book, see a movie or make time to enjoy your coffee each morning. No matter how big or small, it’s important to find joy in your daily life.
Build in regular breaks. Treat scheduled breaks as appointments. You cannot be a good caregiver to someone else if you do not take care of yourself.
Delegate. No one expects you to do it all. Determine what your limits are and ask others to help where you need it. Most people are more than willing to help, especially when given specific tasks.
Seek out joy in your relationship with the person with Parkinson’s. Your hands-on duties, such as bathing and dressing your loved one, might feel like work, but these tasks bring you together. Add some fun to your hands-on care: sing songs, tell jokes, share goals and dreams.
Develop a habit of participating in activities together outside of care tasks. Shared time as husband-wife, mother-daughter, siblings or other relationship — rather than as caregiver and care recipient — allows you to enjoy each other and build happy memories.