While my family celebrated Mother’s Day each year when I was growing up, I remember my mother telling me that “every day is Mother’s Day.” November is National Family Caregivers Month and I think my mother’s perspective applies – every month is family caregivers month. As Edna Ball explains in her recent blog post, “… the term has evolved to care partner. This is a really important distinction because to achieve the most success, a working partnership is essential.” Anyone living with someone who has been diagnosed with an ongoing disease knows that the illness impacts the entire family on a daily basis and not just the person receiving the diagnosis.
In addition to highlighting some family care partners who participate in the Unity Walk, we want to take this opportunity to share some resources for care partners and focus on legislative initiatives underway to provide them with support.
The National Parkinson Foundation (NPF) is one of several organizations that offer resources to help you navigate the various challenges that may arise as a care partner. These resources include a Toll-free Helpline, a Caring and Coping Manual, a Parkinson’s disease (PD) Library, a Caregiver Forum and a Parkinson’s Central Smartphone App. Here’s how you can learn more to benefit from NPF’s resources and tips for care partners.
CAREGIVER ROUNDTABLE AND PENDING LEGISLATION
This past week, Sen. Cory Booker (D-NJ) and Rep. Bill Pascrell (D-NJ) hosted a roundtable on caregiving in Englewood, New Jersey. Unity Walk participants and Parkinson’s Action Network (PAN) Assistant State Directors for NJ, Lisa Paillex Griffin and Joe Narciso were in attendance along with Joe’s wife, Charlene. Sen. Booker and Rep. Pascrell also recently sponsored legislation about caregiving. Learn more about the roundtable and pending legislation about caregiving.
PARKINSON’S JOURNEY: A CARE PARTNER’S PERSPECTIVE
“Whether it is because of Parkinson’s disease or because I’m now older (I suspect a little of both), above all, you learn patience and hope,” states David Maloney. “You learn to appreciate all of the moments, both the large and small, of the life that you are living together. You learn that people want to help and that you and your family can help others by participating in clinical trials, raising funds for research, by being available to them to listen, and by sharing your experience.” This is one perspective of a family’s Parkinson’s journey … read this guest blog post written by a husband, and care partner.
A LONGSTANDING CARE PARTNER
Edna Ball, co-founder of Team Parkinson has lived with Parkinson’s disease since she was 11 years old – first with her mother’s diagnosis of PD at the age of 48 and then when her husband, John was diagnosed over 40 years ago. The years have brought wisdom and some valuable lessons which Edna has shared on our blog. Her comment that spoke to me the most was, “Always remember that every day may not be good, BUT there is something good in every day. Give yourself permission to recognize that goodness and enjoy it.” Read more of Edna’s story about being a longstanding care partner.
CARING FROM A DISTANCE
Sara Beam’s parents lived in North Carolina. Her father had been diagnosed with Parkinson’s disease close to twenty years ago. She and her brothers lived in New York, Massachusetts and Texas and needed to develop strategies to care for their parents from a distance. As Sara’s mom became ill with cancer and after her death, the situation required an increased level of care. Learn more about how Sara and her siblings took on the responsibility of caring for their aging parents from a distance.
The Unity Walk is about community and it takes a loving community to participate in the care of someone living with Parkinson’s disease. Whether you are a care partner for your spouse, parent, child, sibling or friend, we take a moment in November to honor all you do throughout the year.