If you are caring for a loved one with Parkinson’s, know that you are not alone. The Parkinson’s community can help you navigate your journey.
Educating yourself about Parkinson’s is essential. Equip yourself with information and resources that will prepare you for the caregiver experience.
Being a caregiver is just one role you have. It’s healthy to take time for the other things that bring you meaning.
Being a caregiver to a person living with Parkinson’s disease (PD) is a role that changes over time. As the disease progresses and you adapt to different symptoms or challenges, the way you understand your role as a caregiver may change as well. Regardless of where you are in your experience as a Parkinson’s care partner, know that you are not alone.
Below are some of the top resources for caregivers of people living with Parkinson’s. Whether you and your loved one are still in the process of adjusting to a diagnosis, or you have been managing life with PD for many years, these resources will connect you to the support and information to better navigate life with Parkinson's.
For Parkinson's caregivers: Resources available to support you
With the right knowledge and resources, you and your loved one with Parkinson’s can reduce the likelihood of complications from the disease and enjoy a good quality of life. The first step to living well with Parkinson’s is to educate yourself on the disease and its progression.
Managing a life with Parkinson’s can be overwhelming and learning more about the disease can help you feel more prepared for challenges along the way.
Parkinson's Foundation resources:
- The online PD Library is full of free books and fact sheets about managing Parkinson’s and taking care of yourself as a care partner. The Caring and Coping workbook was designed for Parkinson's caregivers in recognition of the fact that every person’s caregiving experience is unique. The tips provided in the workbook help care partners prepare emotionally, financially, and physically for the road ahead to help minimize stress and conflict in your care partnership.
- Join other members of the Parkinson’s community and watch live Expert Briefings to learn about the latest information on Parkinson’s research and care from leading experts. You can also view past webinars on topics such as mental health, PD medications, and Medicare coverage for Parkinson’s care.
- Designed for caregivers, enroll in a Care Partner Program online course. Complete these courses at your own pace and select the critical topic that matters most to you right now—from better understanding nutrition and mood changes in relation to PD and how to manage caregiver burnout.
- Listen to conversations with Parkinson’s experts, with the Substantial Matters podcast. These short interviews will help you stay up to date on the treatments and techniques that are helping people with Parkinson’s and their caregivers live better.
Whatever your preferred learning style, remember that Parkinson’s knowledge is power.
The tools you need at every stage: Kits to help you stay prepared
When a loved one receives a Parkinson’s diagnosis, your life can seemingly change overnight. It’s normal to experience a wide range of emotions as you process this change.
Your needs matter; take time to do the things that bring you comfort. It’s vital that you take of yourself in order to be able to take care of your loved one.
Ordering a Newly Diagnosed Kit from the Parkinson's Foundation can help you and your loved one adjust to a PD diagnosis and prepare for whatever comes next.
Also consider ordering an Aware in Care Hospital Safety Kit. When staying in the hospital, 3 out of 4 people with Parkinson’s do not receive their medications on time, which can lead to unnecessary complications. Aware in Care kits empower people with Parkinson’s and their caregivers with the tools to better avoid this risk. Having a kit on hand means that you’ll be prepared for a planned or unplanned hospital stay and you will be equipped with materials that can help you advocate for the best Parkinson’s care.
Learning how to stay connected and a reminder that you're not alone
Being a caregiver to your loved one with Parkinson’s is an ever-evolving experience. It can be rewarding, stressful, empowering, challenging, and many other varied emotions. Your caregiver role doesn't have to erase or replace the current way you see yourself or any of the other roles you play.
It’s healthy to carve out time for the things that create meaning in your life outside of caregiving. Stay connected with the activities and the people who help you feel grounded. To take care of you, try:
- Starting a conversation with another caregiver or family member using the Care to Talk Cards.
- Reading about the experiences of other PD caregivers and sharing your PD Story with the community.
- Finding a support group in your area or starting your own.
How to get your questions answered through the Parkinson’s Foundation Helpline
The Parkinson’s Foundation Helpline is here to answer your questions about PD. Call 1-800-4PD-INFO (1-800-473-4636) Monday through Friday from 9 a.m. to 7 p.m. EST for assistance in English or Spanish.
The Helpline is staffed by an expert team of nurses, social workers, and health educators who can support you anywhere along the PD journey. Helpline specialists can provide the most current information about symptoms, treatments, care options, finding support, and provide referrals to Parkinson’s professionals near you. You can also email the Helpline at Helpline@Parkinson.org.