I got the idea that having a list of projects we intended to accomplish to finish the house would be useful for when someone says they want to help and is there anything we need. My thought was to break the projects into smaller projects so that we would have some ready projects to give when asked.
Then I found a copy of the book Share The Care: How to Organize a Group to Care for Someone Who Is Seriously Ill (Capossela & Warnock). It is written by two women who came together with a small group of other friends and family to manage the caregiving for a woman whose cancer was getting worse.
I’ve started to think about those of us with MS who tend to heavily rely on our spouse or a close friend for solace and support, and how quickly burnt out those people can become. I think it is very common for a caregiver to get overwhelmed.
Granted, MS is not life threatening and there are certainly often times when an MSer can manage whatever without help. There aren’t necessarily frequent visits to the doctor for which they need a ride, for example. And we MSers are reluctant to ask for help and often resist it.
But so too “healthy” individuals fear offering help to a person with MS, fear that they will be asked to do something they don’t know how to do, fear that others will see their fear of illness or that they’ll be taken advantage of or that they’ll come to be relied upon and thus locked into a commitment. Still people do want to help, so how practical it would be to create a “team” to share in it.
And the system of forming a team of caregivers laid out in this book starts with a group meeting to create a structure for it and get everyone on the same path. As the manual says “it gives you something to fall back on when things get difficult, a ground of being that keeps the group going, keeps the individual members from burning out, and keeps the group together.”
I’ve heard several accounts of people that got together to fundraise and walk in the MS Walk just after someone they knew got diagnosed, for example. Obviously these are folks who want to help and might be interested in joining this team.