Whether you care for someone who is recently diagnosed with Parkinson’s disease (PD), are adapting to new challenges as the disease progresses or have been living with PD for a long time, a strong support network is essential for your wellbeing and the wellbeing of the person with Parkinson’s. Making sure you are taken care of, too, can help create a productive partnership that minimizes stress and conflict. Benefits include revitalized energy, renewed interest in creative endeavors, new subjects to talk about and the realization that you and your partner are not alone.
Parkinson’s is a progressive disease, meaning that it changes over time. That can make it hard to define your role, as your involvement will change along the way. Responsibilities may include helping a loved one with daily activities, managing medications and making financial decisions.
Whatever your responsibilities, define “caregiving” for yourself. Especially early in the Parkinson’s journey, you might not feel like you are actually “giving” care. Similarly, your loved one might not see himself or herself as someone in need of care. But remember, care is not limited to physical tasks. Care can be emotional and spiritual as well as physical.
While your loved one’s Parkinson’s diagnosis probably changed your life overnight, caregiver is a role and an identity that you grow into, and it does not have to erase or replace any existing ways you self-identify. In this session from our 2016 Caregiver Summit, Susan Hedlund, MSW, LCSW, shared how you can continue to experience the love, friendship, contribution to society, ideas, and sense of wholeness that you need to grow as your own person, while you and your loved one face Parkinson’s together.