Tuesday, December 7, 2010

Reconfiguring Gatherings

In our book, we include a letter written to Randy Cohen, author of the ethics advice column for The New York Times. The letter describes a group of men who have played poker together for many years. Now one of the men has been “stricken” (the term used by the writer) with AD, making the game less enjoyable for the other participants. They wish to know the most ethical way to ask their long-time friend to absent himself from their gatherings.

We often share this letter in our presentations to caregivers and ask how they would respond to the writer. One outraged woman suggested that the response should begin with the words “Dear selfish bastard,” which drew hoots and cheers from other participants. Friends and care partners of those experiencing progressive memory loss know full well what it is like to be abandoned by long-time friends. We also share Cohen’s response to the writer and invite participants to critique it, which they do with gusto. But although Cohen’s answer is disappointing, he does give us a helpful phrase when he suggests that perhaps there is a way to “reconfigure your gatherings” in a manner that would permit the friend with AD to participate, at least on an occasional basis.

As we grow older, all of us will be forced to “reconfigure our gatherings” for a wide range of reasons. We have dear friends whose tennis group has been an important circle of friendship for decades. Most of their members are now in their sixties, and several have been forced to give up tennis because of illness or injuries. Yet they still call themselves “the Racketeers” and gather regularly for meals and other social events—tennis initially brought them together, but it is friendship that sustains them.

Progressive memory loss sometimes calls for creativity and imagination to reconfigure gatherings so that sustaining friendships can continue. One woman told me the story of her mother’s “sewing group.” Her mother, who is in her mid-eighties and has been diagnosed with AD, has participated in this group for more than fifty years. Somewhere along the way sewing became less important than socializing, so in recent decades the ladies have focused on playing cards (a game called “sheepshead” that appears to be unique to Wisconsin) and chatting. Over the years, several members have died or moved away, and two “younger ladies” (now in their mid-seventies) joined the group.

One day the mother announced to her daughter that she did not think she would participate any longer. Knowing how important the group was to her, the daughter gently prodded her for the source of the decision. Mother finally confessed that she was anxious about driving herself to the gatherings (something her daughter had been anxious about for well over a year). “Would you still like to participate if I drove you?” she asked, and her mother happily accepted the offer. For a full year, this arrangement worked well, and soon two other daughters were serving as chauffeurs, often remaining to chat with one another while their mothers played cards.

Then her mother announced once more that she did not think she wanted to continue with the group. More prodding revealed that her mother was aware that she was not playing cards as well as she used to and feared that she was ruining the game for others. It had become clear to the daughter that her mother was not the only member of the group contending with memory loss, so she pulled the other daughters together for some brainstorming. They proposed to their mothers that the group substitute dice for cards, a suggestion that was enthusiastically embraced. The group still gathers on a regular basis, the daughter told me, “and it is usually one of the ladies with Alzheimer’s who wins!”

Too often, circles of friendship that provide important social support are discontinued when someone concludes “this does not work anymore.” That observation should always lead to the question “What would work?” In this case, a dedicated daughter asked that question twice, and each time came up with an answer that not only allowed her mother’s group to continue, but also established an important new web of friendship among daughters serving as caregivers. We will all need to reconfigure various gatherings in the years to come; may we do so we this kind of loving creativity!

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