A Care Partner’s Role

Mother and daughter care partners

When a person is diagnosed with Parkinson’s disease (PD), someone who is close to them—whether their spouse, child, parent, or friend—usually becomes their primary care partner.

Care partners take on many responsibilities, from accompanying a loved one to doctor appointments to managing more household responsibilities. What’s important is establishing a partnership—a mutual understanding of what kind of help with daily tasks and emotional support the person with Parkinson’s wants and needs as the disease impacts your routines and lives.

It’s essential, too, for care partners to take care of themselves. Parkinson’s progresses slowly, and the role of the care partner can last for decades. Care partners need to take time out to renew their energy and stay healthy.

Advice for Care Partners

Being a care partner can sometimes be challenging, but having a care partner is essential to the well-being of every person with Parkinson’s. Here are three areas to focus on as you adjust to your new role as a care partner:

1. Managing Your Loved One’s Care

Accompany your loved one to doctor appointments, with their permission. You can offer an outside view on how the person with Parkinson’s has been doing since the last visit. You may also recognize new symptoms or subtle changes that the person with Parkinson’s doesn’t, such as changes in mood or behaviors, withdrawal from social interaction, or speech that has become softer or more monotone.

2. Parkinson’s and Your Relationship

Parkinson’s disease can place stress on a marriage or relationship. Cognitive and mood changes may make it hard to initiate and follow through on everyday tasks, which can be frustrating for both of you. Try to be flexible as you establish new routines.

3. Caring for Yourself

Caring for a person with a chronic illness can be exhausting. It can also be a source of pride, and some care partners feel guilty about taking any time off. But taking care of yourself will help you to be a better care partner. Put together a list of friends and family members whom you can call upon to relieve you for a few hours or in case of an emergency. Consider seeking outside, professional help for in-home assistance if you can afford it.

Don’t forget your own interests and your life outside of Parkinson’s disease. If your loved one with Parkinson’s requires constant care, look for local programs that will provided temporary help (sometimes called “respite care”). This will allow you the time to seek the support and rest that you need.

Take care of your own health. Stay up to date with your own medical appointments and health care needs. Remember to eat well and to get enough sleep.

Support groups offer the opportunity to share experiences and information with empathetic ears. There are groups for people with Parkinson’s and their loved ones to attend together and separate groups just for care partners. If there are no support groups in your area that you like, consider starting your own. Online forums can also be a source of support.