17 Things Support Group Leaders Want Care Partners to Know

In the same way no two people with Parkinson’s disease (PD) experience identical symptoms, there is no one-size-fits-all approach to caregiving. Regardless of where you are in you care partner path with your loved one ― from newly diagnosed to advanced stages ― finding your support system is invaluable.

We asked caregiver support group leaders what advice they would give care partners:

CPS

Register for the Care Partner Program: Building a Care Partnership, a series of online courses for care partners that offers ways to learn, grow and connect with one another.

  1. “Take care of yourself first and get involved in a support group.”
    – Jan B., Touchmark Caregiver Support Group Leader, Ridgefield, WA
     
  2. "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 D., care partner, Team Spark Support Group Leader, Grand Rapids, M
     
  3. “Learn as much as you can about the disease and know that you are not alone. There is help out there all around you.”
    - Rae Marie E., care partner, Coaches Huddle Support Group Leader, Napa, CA
  4. “Take care of yourself first so that you have energy to support your loved one. Take breaks, don't be too hard on yourself and don't feel guilty doing things that you enjoy.”
    – Lynda E., care partner, Brainerd Lakes Area Parkinson's Support Group Leader, Baxter, MN

  5. “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. 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 H., Houston Area Parkinson Society Caregiver Support Group Leader, Houston, TX

  6. “I cared for my mother who had atypical PD. I would advise caregivers to be patient and make time for themselves. I would also encourage people to simply spend time with their loved ones. Spending time with them in the present moment is the greatest gift for them now, and something you will cherish after they are gone.”
    – Nicole H., former care partner, Pioneer Memorial Rest Home Support Group Leader, Mullen, NE

  7. “Understand grief in children and how it can manifest itself. You aren't only caring for the person with Parkinson’s, but the people who surround that person as well, including yourself.”
    – Michelle F., young onset care partner, KCPWP: Kids and Caregivers of People With Parkinson’s Support Group Leader, Mapleton, UT

  8. “Join a support group.”
    – Pat F., care partner, Whine & Dine Caregivers Support Group Leader, Knoxville, TN

  9. “Be involved in your partner’s doctor visits and medication. Take care of yourself!”
    – Elizabeth H., care partner, Fearington Parkinson Support Group Leader, Pittsboro, NC

  10. “We have PD. You are in this together. Learn all you can about the disease. Take the LSVT BIG program as soon as possible. Learn about all the specific programs for PD for your partner to participate: Rock Steady Boxing, PWR, Let’s Ride, Dance for PD, other exercise.”
    – Paula H., care partner, Central Bucks Parkinson's Support Group Leader, Colmar, PA

  11. “Keep active and be happy with what you are able to do rather than looking at what you can’t do.”
    – Myra H., former care partner, Cherry Hill Parkinson’s Support Group Leader, Willingboro, NJ

  12. “Be patient, read all you can, talk to as many people as you can, share info.”
    - Mary Ellen P., care partner, Partners with Parkinsons Support Group Leader, Richmond, VA

  13. “Be sure to open your mind up to joining support groups and sharing your journey. You will find you are not alone and can learn so much from hearing others story, find much needed support and your story will be relatable and helpful to others.”
    – Dawn R., Aloha Carepartner PD Support Group Leader, Marietta, GA

  14. “Take it day by day and make sure you are carving out time for yourself on a regular basis or you will not have the energy/health for the long run.”
    – Kristen S., care partner, Northwest Ohio Caregiver Support Group Leader, Waterville, OH

  15. “Live each moment. Not everyone's walk with PD is the same, but meaningful information, encouragement and strength can be found at support group meetings.”
    – Darla D., care partner, Western Oklahoma PD Support Group Leader, Weatherford, OK

  16. “Attend as many doctors appointments with their partner as possible to learn about the disease, expectations for the future and care plans. Do not to Google anything!”
    – Kelly W., person with Parkinson’s and care partner to her father with PD, NorthShore Active Life PD Support Group Leader, Chicago, IL

  17. “Patience, patience and a bit more patience .... with yourself and your person with Parkinson’s.  This was told to me someone living with PD for 20+ years. It has served my wife when she was living and myself very well.”
    – Jarrig V., former care partner, St Albans Parkinson's Outreach Program Leader, Swanton, VT

For more articles and resources devoted to care partners visit Parkinson.org/Caregivers.

Category
Caregiver Corner
Date
mail icon

Subscribe here to get the latest news on treatments, research and other updates.