Caregivers play a tremendous part in the care and support of those managing Parkinson’s. It is important when facilitating your support or exercise groups to assure they have a chance to share with other care partners the challenges, successes and hurdles of caring for a loved one with Parkinson disease. I have seen several models for this during my visits, and all work well, no one way is best – find the format that fits the needs of your caregivers in the group.
For some, this will be a regular meeting in addition to the loved one’s support group, as they often want and need to be a part of that as well. For others, it will be less frequent, maybe even quarterly, and more of a break-out session during the regular PD support group meeting, but in a separate room. Some care partners plan a social meeting at a restaurant while their loved one is at an exercise class or in the care of another for a short time.
Whatever the format, it is critical for care partners to be given an opportunity to share feelings about the caregiving role – positive and negative, so they do not feel alone or overwhelmed, and can learn from one another about a variety of topics, such as respite care, medication side effects, legal or financial issues etc.
I am happy to report that our WPA Caregiver Committee is working diligently with us on the development of a program to provide real-time, one-to-one peer support for care partners. We are looking forward to offering this as a resource, and will keep you posted on the progress over the next year as we refine the process for this program.
In the meantime, if you do not already have a care partner support group in place, consider talking with a caregiver in your group who you feel may be a good choice to help initiate this with you. There does not need to be a separate, formal facilitator if the group is comfortable just sharing discussion together, just someone to get the conversation going if necessary. If this is not a feasible option for your group, due to time, space or other issues, here are some valuable resources to help foster support for the PD care partners in your communities, so please feel free to share these with your groups.
Caregiver.com: This organization offers a fantastic newsletter, and focuses on common care partner questions, concerns and issues. I suggest encouraging your caregivers to check out the entire website, as they provide information on everything from driving assessments to building an effective care team:
Article: More Than a Hug: How Caregiver Peers Can Support Each Other