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Keep a list of all care team members, noting what symptoms or conditions they manage, the treatments they prescribe and their contact information. Know who to call for what, especially between your Parkinson’ s physician and internal medicine( or general health) doctor, as well as any other specialty health care providers. Ask them for this information if you’ re unsure! Always request that providers share notes or speak directly with each other if needed, such as when two providers help manage the same symptoms. Keep copies of visit summaries that you can take to other appointments, too, just in case.
If you’ re interested in a support group, ask your loved one’ s doctor or social worker for recommendations. There may be options through the clinic, another medical center or other organizations in the community. You can also look online for resources such as MJFF’ s Buddy Network, which offers a space to connect with other care partners and people living with Parkinson’ s. Turn to the Resources for more.
Building Your Own Support System
Your own personal care team and support network is just as important as your loved one’ s health care team. This is a group of people and resources that assist you, the care partner and the person you are outside of care partnership. It’ s a system that cares for you and your health and helps you carry the weight of care partnering. It’ s a place where you can share feelings and let out stress, fears and worries. Everyone’ s support system looks different and changes over time. Your support system might include:
+ Doctors who help manage your health and conditions you live with.
+ Friends or family members to whom you can reach out when you’ re feeling sad, stressed or alone.
Write everything down. Keep medication schedules in writing. Maintain a journal of your experiences. Go to medical appointments prepared, take notes and clarify what the doctor says. It’ s critical to ensure both you and the person you’ re caring for understand everything.
Prentis Brooks
+ Groups that don’ t focus on Parkinson’ s, which can provide social support and time to disconnect from your role as a care partner. These can include running or walking clubs, exercise classes or sports teams, art classes, drop-in hours at a local yarn store where you can knit and socialize, a free class or book club at the library or a volunteer group.
+ Religious or spiritual communities like those found through your place of worship.
+ Other care partners, informally or formally through a care partner support group( either online or in person), with whom you can learn, discuss and share.
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