By Jim LaMorte, Friend Caregiver
I care about a caregiver, and I am not alone. There are a lot of us, and last year we all faced the same problem of how to help. Here is our story about the Caring Circle that grew around two friends in pain. Let’s call them Art and Grace. When Grace began her two-year battle with Lymphoma cancer, her husband Art began his new career as Senior Caregiver and Chief Bottle Washer. He gradually took over many of the household chores and served as personal nurse as Grace’s condition worsened.
When challenged with each new decline, Art simply stepped up to do anything and everything that was required for Grace – Regardless of the cost to him. Their story is likely familiar to many readers, with the inevitable slide from Hope Mountain into the Valley of Doubt, and ultimately ending in the Pit of Doom. Art and Grace faced this challenge with wisdom, courage, and love. We, their friends and family members encountered a challenge, too: How to help Art and Grace cope. What did they need? What could we offer? What help would they accept? We fumbled at first, all wanting to help so much. But as Art said later, “Having four casseroles land in my fridge on one day, although miraculous and generous, was not all that helpful.”
Our dilemma was this. While we didn’t want them to go through this alone, we also wanted to respect their privacy. We hesitated to call or knock on their door. We didn’t know what to do, but doing nothing felt wrong. We didn’t want to say the wrong thing, offering some lighthearted comment that triggered pain or anger, but saying nothing felt wrong, too.
We learned that Art and Grace faced a similar conundrum. They did not want to impose on others, but felt their energies dwindling. Art was clearly heading for “caregiver burnout,” a new term for all of us, but did not know what he needed or who to turn to. Asking for help was embarrassing and triggered a guilt reflex. When we all talked about the situation honestly, we eventually came to this agreement:
- We supporters of Art and Grace promise that we will not take on a role or engage in an activity that unduly impacts our lives.
- In exchange, Art and Grace promise to identify and express their needs, whatever they might be. Then we can choose to meet specific needs, according to our respective schedules and availability.
Trusting each other on these two points helped everyone. No one had an inkling of how to structure the help that Art and Grace needed, but at least we had a working principle. Some type of calendar seemed useful, but how could we get everyone using the same system? By great good fortune, we discovered the FCBC and the experience they offer. In the first meeting, we learned that our situation is common, and that there are tools that could help. FCBC explained that it is not unusual for friends to scatter when they hear of someone who is seriously ill or injured. We also learned about the power of sharing the caregiving activities in a Caring Circle, one that spreads the work and the joy of giving among members of a new community.
One tool in particular became a centre-point for our coordinated efforts. The online service we adapted is called Lotsa Helping Hands. This application set out a place for Art to state his needs by time and date, and allowed us to respond when we were able. It’s all based on a common calendar that people can reference any time. This tool allowed us to create a new community, we called “Grace’s Circle.” Eventually, the Circle included nearly 50 members, so sharing the workload was easy. We shared meal preparation, visits, yard work, and giving Art a break occasionally. Even distant friends could participate by sharing stories and photos on Grace’s Circle for us all to see. Eventually, Art used Lotsa Helping Hands to keep everyone informed about the latest news, including test results and how Grace was feeling.
Watching a friend or family member suffer and being unable to relieve their pain feels like an unfamiliar level of hell. There is a persistent itch to help. With the help of the FCBC, and the tools they identified, we found a way to build a new community of care that worked.