What Makes a Care Partner?
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Care partner. Caregiver. Ally. Partner in Parkinson’ s.
Whatever words you use to describe yourself, you are an essential part of your loved one’ s care team. Many people call themselves care partner. Some prefer caregiver, ally or carer. Others simply say partner, child or friend. One community member appointed himself“ Chief Optimism Officer” of his wife’ s care team. Another refers to herself as“ wife, researcher, morale booster, teacher, planner and secretary,” because no one word encompasses her role.
If you support someone in their disease journey in any way— emotionally, physically, mentally, spiritually, financially or otherwise— you are a partner in their life and care. You and your loved one work together as a team, in a new type of relationship. As with any relationship, both people must commit, using open and honest communication, to work through the ups and downs of life— and life with Parkinson’ s.
Being a care partner is something you figure out as you go. There’ s no standard list of responsibilities or handbook to follow. But you don’ t have to figure it out on your own— and you are not alone. Many others are traveling the same road with you. They can share their approaches, learnings and trials and errors to help you on your path.
A Note on Language
Throughout this guide, we use the words care partner because the wider Parkinson’ s community has, by and large, voiced their preference for this term. Many say they feel care partner best describes the mutual care and support between the person living with Parkinson’ s and the people who love them. We know not everyone prefers this term; as with everything in life, choose what works best for you.
Heather Butchen is a care partner to her husband, Jeff, who was diagnosed with Parkinson’ s in 2013 at age 51. Heather and Jeff started their own Parkinson’ s support group in 2014, a year after Jeff’ s diagnosis.
You’ re not alone. No matter the topic— medication side effects, emotional ups and downs, constipation— someone else has experienced it. There are always people or resources to guide you.
Heather Butchen
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