Parkinson’s disease can change your loved one’s life in many ways and can also change yours. How your relationship will grow depends on your outlook as a care partner. However, the weight is not entirely on your shoulders, and you must also care for yourself.
Being an effective care partner can be demanding and challenging, so here are a few tips to help you along the way.
Communicate Openly and Honestly
Parkinson’s will progress, and there will be good and bad days. You’ll understand your loved one’s needs and feelings best if you communicate openly and honestly with each other. Talk about your expectations, worries, and concerns.
Be open about your feelings and proactively process them healthily. Find meaning and purpose in your new role, and look forward to how you and your loved one will face Parkinson’s disease together.
Find a support system to lean on as a care partner during tough times. You can confide in family, friends, or professionals, like therapists. You can also reach out to organizations like PCLA to connect you with support groups, information, and resources.
Parkinson’s is a progressive disease, so it’s important to recruit help in this journey.
Continue your research and education on the disease. The more you know about it, the more prepared you are to handle changes in your loved one’s condition. Ongoing learning will help you understand their needs and provide the best care possible.
For example, you can bookmark PCLA’s blog and news page, sign up for support groups, or utilize Davis Phinney’s resource page dedicated to care partners.
Keep in Touch With Doctors
Keep a list of all the doctors the person living with PD is seeing and communicate with these doctors regularly. The physicians can update you on your loved one’s condition and offer helpful tips on how to best care for them.
Join a Support Group
Providing care for someone with Parkinson’s can be exhausting, especially when you don’t know where to start. Care partner support groups offer a great way to meet other people in your shoes. You can share your experiences, ask questions, get advice, and learn from others!
Care For Yourself As Well
Caring for someone with Parkinson’s can be both physically and emotionally exhausting, and it’s important to make time for yourself to recharge. Whether that means taking a break from caregiving duties, reading a good book, or going on a hike with friends, it’s important to find ways to relax, have fun, and stay healthy. When you’re feeling refreshed and rejuvenated, you’re better equipped to provide the support your loved one needs.
Check out these self-care tips for Parkinson’s care partners:
- Ask for help when you need it. It’s okay to delegate some tasks and accept help from others. However, be realistic, and don’t try to do everything on your own.
- Take care of your physical health. Get enough sleep, eat a balanced diet, and exercise regularly. Taking care of your physical health will help you have the energy and strength to provide for your loved one.
- Take care of your mental health. Make time for yourself, and do things you enjoy. Don’t forget that you have a life outside of being a care partner. You can take breaks when you need to and practice not feeling bad about doing so.
Caring for a loved one with Parkinson’s can be difficult, but it’s also rewarding. Being a Parkinson’s care partner shows you how compassionate and strong you are. It’s a chance for you to make a difference in someone’s life by creating deep connections, providing support, and giving hope. Everything starts with you.
Care Partner Resources
Use this helpful list of resources to support you as you support your loved one with Parkinson’s:
Parkinson’s Caregiving Publications
- 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
To be an effective care partner, you must be patient, understanding, and supportive. Some of your primary responsibilities include joining doctor’s appointments, helping with medication, providing transportation, and managing finances. But you don’t have to do this alone. If you have questions or need help with a care plan, PCLA is here to provide support along the way. Feel free to connect with us.