When a loved one is diagnosed with Parkinson’s, it can be difficult to know how to help. One of the most important things you can do is to become a care partner. Also known as a “caregiver,” a care partner provides physical, emotional, and, sometimes, financial support to a person living with Parkinson’s.
This role can be both rewarding and challenging, but it’s vital to the health and well-being of the person with Parkinson’s. In this article, we dive deeper into what it means to be a care partner and share tips on how to be an effective one.
What Is a Parkinson’s Care Partner?
A Parkinson’s care partner supports and assists a person with Parkinson’s disease. They can be a spouse, family member, or even a friend.
Also, you don’t need a license, medical training, or certification. Rather, you must rely on commitment and communication to build a mutually beneficial partnership with someone living with PD.
What Do Parkinson’s Care Partners Do?
Care partners have varying levels of involvement. Some may be solely involved in making decisions about the person’s care and treatment.
In other cases, the care partner may be the primary caregiver, responsible for all aspects of the person’s care. Or, the care partner may simply provide occasional assistance as needed.
Regardless of their level of involvement, care partners play an essential role in the lives of people with Parkinson’s disease. Take a look at the variety of ways that you can help as a care partner:
- Monitor symptoms and medications
- Coordinate medical appointments
- Assist with activities of daily living
- Provide emotional support
- Provide financial support
- Advocates for the needs of the person living with PD
- Plan and coordinate care
- Plan and coordinate transportation
- Educate the family on PD
- Provide hands-on care
- Manage finances and insurance
- Arranges for home care or hospice services
- Respond to emergencies
- Support the patient through difficult times
- Help maintain a positive outlook
- Provides a listening ear and patience
- Is a source of strength and hope
Why Are Care Partners Important?
Parkinson’s care partners are critical in helping those living with PD with physical, emotional, and financial strains.
Parkinson’s disease causes involuntary or uncontrollable shaking and stiffness. As a result, people with it have difficulty with balance and coordination, making it almost impossible to do simple tasks without help. As a Parkinson’s care partner, your role is to provide this help.
Of course, you can contribute to the physical well-being of the person living with Parkinson’s in more ways than one. Those with Parkinson’s need to eat right and get regular indoor or outdoor exercise. You can help create menus, schedules, and accountability for the loved one with PD.
Besides physical help, a care partner provides moral and emotional support. The challenges of Parkinson’s are often overwhelming and may lead to anxiety and depression. In addition, it can be an isolating disease — some may not be able or want to participate in activities they once enjoyed.
As a care partner, you can help the person with Parkinson’s stay connected. For example, you can facilitate activities with their loved ones, support groups, or even their own sense of self. Also, you can make sure they’re getting proper rest as sleep disorders are common with PD.
A Parkinson’s care partner can contribute to household expenses, help to cover medical costs, or watch over the person’s finances. By being a source of financial stability, you can help your loved one focus on getting the treatment they need to live a full life.
Resources for Care Partners
As a care partner for someone with Parkinson’s disease, many helpful resources are available to you. Here’s a helpful list:
Publications on Parkinson’s Caregiving
- Every Victory Counts Manual, for Care Partners, from the Davis Phinney Foundation (request a free digital copy by email or a free printed copy by email)
- Parkinson’s Care Partner Rulebook, from the Davis Phinney Foundation (request a free digital copy by email)
- The Carer’s Guide, from Parkinson’s UK
- You, Your Loved One, and Parkinson’s Disease: Advice from Lonnie Ali and the Michael J. Fox Foundation, from the Michael J. Fox Foundation
Online Educational and Support Resources
- PCLA’s support groups for care partners
- Let’s Talk Care Partners: a series of online panel discussions among Parkinson’s care partners from PCLA
- Building a Care Partnership: a free, online self-paced course from Parkinson’s Foundation, designed for those new to the care partner journey
- Monthly care partner meetup series from Davis Phinney Foundation
General Caregiving Resources
- The USC Family Caregiver Support Center offers resources for family caregivers in Los Angeles County. In addition, they offer care partners customized support, including counseling and connection to resources like caregiver respite and more. Call (855) USC-6060 for more information.
- The national Caregiver Action Network offers online forums for caregiver support and a Family Caregiver Toolbox.
- The Caregiver Space is an active community offering personal stories, articles of interest, an email newsletter, and more.
- The Family Caregiver Alliance offers resources, including an online community and virtual caregiver support groups.
Parkinson’s Care Partner: Next Steps
There’s not one way to be a good care partner. How you play the role may differ from others, but as long as you’re giving the best care a partner can provide, you’re making a significant change in your loved one’s life.
For care partners, check out these valuable resources. Parkinson’s Community Los Angeles (PCLA) supports over 57,000 Angelenos with Parkinson’s disease. We know how Parkinson’s can take a toll not just on the patients but also on their families. We aim to connect you with educational materials, support groups, and activities. At PCLA, Parkinson’s care partners are never alone, so feel free to connect with us — we’d be happy to help.