What happens when you take a group of 5 worn-out, exhausted women and put them in a house together? At the ALS caregivers retreat in early June, what happened was hours of raucous laughter, affectionate connections, and flowing tears, knowing this was a safe place to shed them. But especially the laughter. And a group that started out as five strangers became close friends and supports for each other.
For Lura, the best part of the weekend was talking with others and hearing them respond. Her own husband lost his ability to speak over a year ago. Having real conversation had the same emotional gratification as eating something delicious. It struck at a deep and sensory level.
For Diane, the weekend was “eye-opening, ear-opening, and heart-opening.” She had been isolated and distraught, and the weekend gave her hours to connect, one on one with people who “were on the same page.”
And, because ALS staff joined us for dinner, Diane was able to get support services at home that she has desperately needed. In a conversation with her just the other day, she said that, “because the VNA (Visiting Nurse Association) is sending someone now, I actually have time to plant [my garden].”
These women created a community of support for themselves and each other that they continue with a private FaceBook page and a Marco Polo group. As they return to their roles as caregivers for their husbands who have a horrible disease, they have skills they use to maintain themselves and resources for helping each other.
Nancy’s House’s mission is to provide a retreat setting that breaks the isolation and exhaustion of family caregiving – allowing rest, education, and connection with other family caregivers and support networks in order to return with skills and knowledge for maintaining health and well-being. I would say, Mission accomplished.
Special thanks to the ALS Association for knowing their caregivers need support and for helping Nancy’s House to provide it, to the Powell Family Foundation that has recognized that same need and funds our efforts to serve the ALS caregiving community, and to Marianne Deery, innkeeper of the Twin Turrets Inn in Boyertown, and exemplary host. Our stay there was fantastic.