"Call me if you need me." (The Family view)(Column)

This new column will look at MS from the family's point of view.

Our columnist is president and co-founder of the National Family Caregivers Association. Her husband Steven was diagnosed with MS over 20 years ago.

" Call me if you need me. " How often have you heard that? If you are a family caregiver, you've probably heard it a lot. But despite the frequency of this seemingly well-meaning phrase, many family caregivers do not get consistent help. Why not?

One of the reasons is that we don't know how to marshall the goodwill of others. We don't know how to translate "Call me if you need me" into a network of friends and family who help out on a regular basis.

Forming a group, what I like to call "a caring community", spreads the responsibility around. Family caregiving is more than a one-person job. You've got to believe, in the core of your being, that you are entitled to some help or you'll never have a good response for those who say: "Call me if you need me."

In their wonderful book, Share The Care, Cappy Caposella and Sheila Warnock recount the story of how they became part of a caregiving group for a friend who was dying of cancer. They'd never done anything like that before. Both had high-powered jobs and were petrified at the idea of being relied on by someone who was so seriously ill. Despite all of this, they helped establish a network of friends, family and acquaintances that has become a model of good caregiving you can follow.

I'm sure many of you are asking, "Why would anyone want to take on my caregiving responsibilities?' The answer is that people really do want to help. The problem is they don't know how, and they are afraid of getting swallowed up in the process. That's where the concept of a group comes in. I advise all of you to read Share The Care.

The value of a caregiving group is that it spreads out the tasks, and it is structured, so that no one person, you included, is always on call. A group can divide up work. It can utilize the talents and time of individuals in a productive way. It can let you focus your energies on the things you do best, and that are most important for you, as an individual and a caregiver.

Think about it -- isn't that what you want? Doesn't much of your frustration come from the fact that you don't have a system like this in place? You don't want people to say, "Call me if you need me." You want them to be there when you need them. You don't want only intermittent help with an isolated task. You want help on an ongoing basis. An organized caregiving group is one excellent way to make that happen.