by Cary Marriott

We call ourselves the Reevettes. We are not a chorus line or a Motown band. We are a caregiver group and we take the name from my sister, Reeve. We are nearly 30 in number and among us there is a lawyer, a professor, a singer-songwriter, a software engineer, a chef, a radio producer, an image consultant and a human resources director; many of us are mothers and fathers, as well.

We are critical mass - critical to my sister's well-being. We are brain power, muscle and talent. We are medicine the doctors don't have.

My sister has a terminal illness - amyotrophic lateral sclerosis, better known as Lou Gehrig's disease. In this disease, large nerves in the spinal cord and brain called motor neurons gradually die and no longer send messages to the muscles. The muscles waste away, leaving a clear mind trapped in a paralyzed body. Average life expectancy following diagnosis is two to five years. 

No description of this disease ever seems apt. When I learned what ALS is, I actually wished my sister had cancer instead. At least there would be a treatment, some hope of remission and cure, and people would understand. It is difficult to describe the sense of loss and grief and isolation - a relentless drumbeat in the distance growing louder - that accompanies this disease as the tasks of daily living, one by one, become impossible.

Over three years, I have watched my sister, a woman of 40 at her diagnosis, go from a cane to a walker to a wheelchair. I have watched her lose the ability to get down on the floor to play with her niece and nephew, to write her name, to tie her shoes, to turn the pages of a book. She is losing the muscles that control her speech. Eventually she will be unable to swallow or breathe.

In the early months, when Reeve was first diagnosed, I grappled with trying to help her. She was in Boston; I was in Pittsburgh. I sent pumpkin bread. I sent books - "Prayer is Good Medicine," "Anatomy of an Illness," "The Healing Mind." I looked into craniosacral therapy and Chinese medicine. I found a course for her called "Mindfulness Meditation." But I was tossing life preservers into a raging sea. Mostly, I felt guilty for not being there, and I worried. How was she going to cope as a single woman living on the third floor of a house?

Who will put out the garbage? Who will change the light bulbs? Who will take the cats to the vet? One or two friends were filling in, but the list of tasks she needed help with was growing.

The fear and sadness overwhelmed me at times. I knew I wasn't alone in my feeling of impotence. Friends of hers were saying, "Let me know if I can do anything." They wanted to help but didn't know how, and my sister, like many of us, didn't like asking.

Then one day, my answer came in the mail. A friend sent an article about a book called "Share the Care: How to Organize a Group to Care for Someone who is Seriously Ill" by Cappy Capossela and Sheila Warnock.

I ordered the book and began to read: "We live and prosper, sicken and die, too much alone..." Immediately I felt the relief that comes from being understood. Here, God was saying, is a road map.

I had a new baby, so it still took me a few months before I found the courage and the stamina to initiate "Share the Care." With my sister's help, we enlisted three of her friends to launch our group. No one wanted to think; we just wanted to act and the book made that easy with explicit directions. First off, we need to organize a meeting of friends and acquaintances who might want to participate.

On a Sunday afternoon, we crammed into a small living room. Thirty-five of us, including my sister and our parents who live in Florida, sat elbow-to-elbow. Before the meeting I had photocopied what seemed like reams of yellow, pink and blue paper. At the meeting, all of this came together as a "Yellow Pages" with everyone's phone numbers and addresses; a phone tree; and a form called "Your Limits, Strengths and Weaknesses," which gave all the chance to list what they are good at, what they like to do and don't like to do.

We ended up with a core group of 18 "co-captains" who rotate week to week, taking charge, asking my sister what she needs and finding people to do the chores. No one has to do everything. The rest of the group opted to be "floaters" who fill in where regular members can't or, like me, live far away and can only take on a project by phone or e-mail.

If part of the meeting was devoted to getting information, all of the meeting was an opportunity to show my sister how much we cared for her. At the beginning, as the book suggested, we wrote down on an index card "Right now I am feeling..." and placed it in a hat. Someone else then drew the card and read it. (Even the least "touchy-feely" person among us could handle this.) "Hopeful," "sad," "vulnerable," "lucky to know Reeve" came the responses.

Three hours and two tissue boxes later, we closed the meeting with the same exercise. There was boundless enthusiasm: "Let's get started!" "I think this is going to be an exciting endeavor." "I'm inspired about helping Reeve and relieved that I now have some concrete ways to do that."

I happened to draw my sister's card. Recognizing her handwriting, I read aloud, "Truly happy." That was one of the most gratifying moments of my life.

Since that day, the Reevettes have been shoppers, drivers, cooks, paper pushers, painters and companions at countless health-care appointments. We have talked to lawyers, financial planners, health insurance companies and wheelchair vendors.

When my sister couldn't drive anymore, we shuttled her to work. When she couldn't climb the stairs to her apartment, we found her one in an elevator building. At the moment we are at work on a benefit concert for her. As much as all that, week-in and week-out, we are there to take some worry away.

Nearly three years later, the Reevettes remain strong. Some of us have dropped out, other have joined. "Co-captains" have become "floaters" and vice versa, as our own lives ebb and flow. "Share the Care" doesn't say much about keeping a caregiver group together long-term, so we have found our own way by meeting every few months. For the most part, we have taken the authors' admonitions to heart, saying "no" when we need to and keeping our own lives in order.

I am flying off to Boston soon. When I see the Reevettes, I will thank them, as always, for their help. She's my sister, after all. I know what I will hear in response: "gift," "privilege," "honor," they will say. One Reevette told me recently, "It's one of the best things I've done with my life." Clearly, there is something in it for us, which is a part of what makes it work. The other part is that my sisters not only counts on us, we count on one another.

In many ways, the Reevettes are together for an enormously sad reason, but it is my favorite group. We sigh collectively, but we also share the joy - the joy of knowing my sister, of coming through for her, of watching how this experience is bringing out the best in us. We share the pride of having raised a barn for Reeve in a world that can seem to be lacking in community. And I know that deep down we all hope that if we ever need it, a caregiver group will be there for us, too.

I think of the Reevettes as the inner tube on which my sister floats downstream. But she's our ballast. Without her, we would bounce aimlessly about the rocks. We hold her up; she keeps us on course, reminding us, as someone said at the first meeting, "how trivial that to-do list is on the kitchen table." She shares her dignity, her humanity, her sense of humor with us and teaches us to live in the moment.

Maybe my sister is living longer because of us. I know we are living better because of her.

Thanks Karin for sharing this with us.

"Quality questions create a quality life. Successful people ask better questions, and as a result, they get better answers." Anthony Robbins