I get so caught up in looking for information about my husband’s diagnosis that I sometimes forget that I have also been impacted by this illness and there are times I need support and advice. Just as there is a lot of information out there for someone with Parkinson’s Disease, there is a lot of information for someone like me who cares for them. Being a CarePartner for a spouse is a 24-7 job that I certainly never anticipated, why shouldn’t I seek out any resources available to make sure I am doing the best I can for both of us?

One of my favorite resources comes from the Davis Phinney Foundation and is coordinated by his wife, Connie Carpenter Phinney. I first encountered this in the Davis Phinney Foundation Manual called Every Victory Counts where they dedicate an entire section on CarePartners. I have since joined a monthly Partner’s get together that Connie leads and it gives me great information and connections within an international PD CarePartner’s community.  

It is so easy to lose yourself when caring for a spouse with a chronic illness. I have a version of the “Caregiver Ten Commandments” from an organization called Elder Care at Home that hangs on my wall to remind me that it’s okay to “schedule time for thyself and thy support network”. This more general advice goes out to anyone who cares for a loved one with a chronic illness but it truly speaks to the heart of who we are and what we do. Make time to look for those resources you need, it won’t be time wasted and you’ll live better for it.

Resources for CarePartners include Family Caregiver Alliance; Caregiver Action Network; your local Area Agency on Aging; and from the Davis Phinney Foundation The Parkinson’s Care Partner’s Digital Toolbox.