Lessons from the Lifelines Writing Group
by Alan Dienstag
Few illnesses inspire the kind of dread as that caused by the prospect of Alzheimer's disease, which is understandable. For people in the early stages of the illness who are experiencing impairments but still entirely cognizant of the dissolution that lays ahead, the challenge is to construct a life in the shadow of an advancing darkness: to answer the question, "What is the point?"
Professionals working to improve the lives of people in the early stages of Alzheimer's disease should be able to fashion a meaningful response to this question. The difficulty lies in the fact that despite our best efforts, our attention is continually drawn to the unraveling taking place before us. The individuals' strengths and character, the very core of the person with whom we are interacting, seem to recede.
As we watch our clients lose their memories, powerful feelings surface that have a profound effect on how we think about our work. These feelings can narrow our field of vision in ways that are often insidious and make it difficult to think creatively about possibilities. This was the first among many lessons I learned through my experience with the Lifelines Writing Group.
As someone who has run support groups for people in the early stages of Alzheimer's disease since 1995, I did not think I needed to be convinced that valuable psychological work could be done with people in the early stages of the illness. I saw firsthand that, allowing for modifications in the process, the benefits of supportive group psychotherapy for people with serious medical illnesses could be extended to people in the early stages of Alzheimer's disease. With these groups, individuals were not only supported but also encouraged to grow. I was resolute in encouraging group members to resist being defined by what they could not do and inspired by their valiant efforts to find meaning and purpose in their lives. Despite this, my sense of the therapeutic possibilities available for these people now appears to have been limited in some important ways.
In the spring of 1996, I got a call from the director of the local Alzheimer's Association chapter. She told me that a member of a caregiver support group was married to a writer who wanted to speak with someone about using writing as a therapy for people with Alzheimer's disease. She asked if she could give him my name and number. I agreed but was not enthused. I thought that this was not a good idea and would be unlikely to succeed. The activity would be too frustrating, too dependent on an interest in writing, too solitary, and so forth. I was also not excited about having to explain all of this to someone who was surely well intentioned but, in all likelihood, naïve and unrealistic. When I realized that I was going to be speaking with Don DeLillo, a highly acclaimed and renowned author, I was more intrigued but still unconvinced. We discussed the difficulties and, in the course of our discussion, Don said something that sparked my curiosity. He talked about the experience of writing as a more concentrated type of thinking. "Writing is a form of memory," he said.
Writing is a form of memory. The phrase stayed with me for some time. I repeated it to myself and told it to others with whom I worked. I realized that for all of my work with people with memory impairments, I had thought very little about memory. To the extent that I thought about memory at all, it was in fact about the loss of memory. It had never really occurred to me to think about other forms of memory and the possibilities inherent in them. It was a writer's insight on the nature of memory that suggested these possibilities, and although I still had only a vague idea of how we might put them to work, I saw the potential and committed to working out an intervention plan with Don.
We agreed that working in a group would reduce some of the pressure on any particular member to perform. We also agreed that the group would be neither a class nor a therapy group per se. Writing would not be taught or critiqued, and written self-expression would be valued above all else. Don and I would function as co-leaders, providing support and encouragement as needed. I believed that the writing should be done during the group time and left with us at the end of the session. This took the burden of locating and remembering a notebook every week from the participants and their family members. It also freed the group from the onus and pressure of assignments. Group members would write and read their work to one another and discuss whatever came up in the process.
As with all successful collaborations, ours had many advantages that could not be designed or "worked through." Don, who was shy and reserved by nature, was perfectly content to let me "run" the group. This is not to suggest that his role was less important. Don contributed to the group in a way that was uniquely suited to his identity and expertise; he was critical to its success. If I had run the group by myself, it would have inevitably evolved into writing as therapy, but Don's involvement guaranteed that the focus on writing would be maintained. His belief that people need stories to live, and his appreciation of the unique value of writing as a means of expression, elevated the group members' efforts.
In our group, my clinical sensibilities and Don's creative sensibilities intermingled. The group's functioning was more of an intuitive and creative process than existed in other groups I had led. Don had no interest in "teaching" writing, and I was not inclined to run a traditional therapy group as long as he was around. Our primary therapeutic focus was on making people comfortable and structuring the group so that people would be inspired to write. The fact that I was making no effort to place the work of the group into some kind of traditional psychotherapeutic framework enabled me to see and understand my work with group members in a fresh way.
Our goal was to stimulate memories and feelings. We began by devising a list of topics, one or two of which we would present at each meeting, which might serve as a point of departure. The original list was made up of the following subjects/titles:
I remember … My friend An unforgettable person The house where I grew up Summer memories The last time I saw … The ocean What is happening to me Birthdays My doctor A movie My mother's voice My father's hands A photograph What other people notice A precious object The future My life now
Group members were free to reject these and choose their own, ask for another suggestion, or not write at all. We followed a strict no-pressure policy. Don came up with the official name of our undertaking, Lifelines: Alzheimer's Narratives. Over time, this changed to The Lifelines Writing Group.
The criteria for inclusion in the group were as follows:
Confirmed diagnosis of Alzheimer's or related dementia Awareness and understanding of the diagnosis Sufficient physical Stamina to participate in a 90-minute group Sufficient cognitive and language abilities to communicate and to form relationships with other group members as well as to understand the rules of the group Willingness and ability to write (potential participants were asked to write "a few sentences" about their day or a favorite activity in the screening interview)
Our first efforts at recruitment through announcements in the Alzheimer's Association newsletters and in the local paper were not successful. Very few people called, and those who did were interested in activities for individuals who had nor yet been diagnosed with Alzheimer's disease or whose illness was more advanced. Initially, we hoped to reach out beyond the relatively small group of people already being seen in early-stage support groups. It became clear, though, that for many people among the population from which we were recruiting the idea of writing "in public" was intimidating. Consequently, we turned to two support groups in the New York City area and focused our efforts on them. We were able to easily recruit six group members from these two groups and set a date to begin.
Offering the group to people who were already support-group members turned out to have significant advantages. The screening process could be streamlined, and the group members' familiarity with one another helped them to relax. An interesting synergy developed between the two experiences. They were distinct but also complementary. Group members often would continue a discussion that had begun in their support group in our writing group. We used these themes at times to generate subjects for writing. Group members also reported feeling a deepening sense of understanding and connection with their writing colleagues to their support group leaders.
The first topic we presented to the group, and one that we returned to several times, consisted simply of two words followed by ellipses: "I remember …" Here is what group members wrote in response (spelling and punctuation are verbatim):
From Ron, a 68-year-old who spoke very little in his support group:
I remember how nervous I'd been at various times in my life—for no reason at all. I remember how so few of them ever came to fruition.
From Elizabeth, a 73-year-old retired nurse:
I remember when I was a little girl sitting under a tree during the eclipse. It got dark and the birds went to bed.
I remember that I want to make a boke of what I have things I have had in my life.
I can remember picking a fig from a tree in Athens. My lover watched me with delight.
From Charlotte, an 84-year-old:
I remember the first time I walked with my parents on the bridge that went to Brooklyn. It was hard for me and I fell very often. My father would pick me up and carry me for a while and put me back to walk It took a little time to learn to walk all the way but I did. I remember as I write this about the cat that lived with us who also like to walk and when he saw us ready to go he was right with us and we loved it.
I carried a love for walking all through my life, and even now when things go bad I walk and things seem to get better.
I hope I'll be able to walk as long as I live.
From Sarita, an 86-year-old retired psychotherapist:
1 remember when Poppa's horse brought him home and Poppa having fallen back in his seat. I heard Mamma's outcry as she rushed out and maybe brother Lou was there or brother Nat—because he was brought in and laid on the bed in the downstairs bedroom. Mamma gathered all us kids together and sent us down to Mrs. Carr's house which was always so clean and neat and we spent the night there.
The next morning we all returned home and I looked out of the bedroom sitting room window I think saw a hearse going down the street. But I was really happy because someone had left an orange and it was all mine.
From the outset, I was surprised at the directness and poignancy of the work produced by the group. I shared the writing with the co-leaders of the support group to which many of the writing group members belonged. Those co-leaders were struck by the amount of feeling in the work and by the ways that the writing presented new facets of information about people that they had come to know quite well. The writing seemed to open a different door into the lives of these people.
Very quickly, the group settled into a comfortable pattern of working, in which we would meet, talk together about what was on people's minds for a time, and then write and read the work.
Interestingly, in the moments when the group would fall silent and settle into writing, my own memory was often stimulated. I remembered schoolmates, childhood friends, and visits with long-forgotten relatives. The Setting very powerfully evoked in me positive recollections of being in a hushed classroom and concentrating on an assignment. I recalled vividly the quiet pleasure of thinking and the comfort of the group quietly thinking together. This was a particular kind of quiet that I had not thought of in many years, and it was the sound I heard when the writing group did its work.
One important aspect of memory and group dynamics that I had overlooked in my work with these people prior to this experience was that many things are transmittable within groups. This includes everything from feelings to coughs. Although I am very familiar with emotional contagion in the group setting, I had never thought of how this might also apply to the mental activity of writing and remembering. We tend to think of these activities as solitary, and often they are, but the effect of group contagion operates here as well. When individuals are around others who are doing a writing and remembering activity, this serves as a powerful inducement to do it themselves.
How does understanding this phenomenon translate into helping people who are forgetting? One answer that emerged from the Lifelines group is that we should surround people who are forgetting with acts of remembering. People in the early stages of Alzheimer's disease are in danger of forgetting that they can still remember, as are those of us who work with people with Alzheimer's.
Writing and remembering became the work of the group, then, and once the routine was established and a level of acceptance and security bad been reached, group members took to the task with surprisingly little resistance. Often, individuals requested help spelling or finding a word. Occasionally, a group member would laugh or start to cry while writing, and of course some participants became frustrated when words and thoughts that once flowed became tangled and confused or stopped altogether. When gentle encouragement failed to help, I sometimes offered to have a group member dictate his or her thoughts to me or I would just write words that would help the person remember a story to tell us. Stories written or told with great difficulty were almost always worth the effort. A particular example of this was the work of a woman named Charlotte, mentioned previously.
For many years, Charlotte had written a column that appeared in the newsletter of a Jewish women's organization and was especially distressed by the loss of her writing abilities. Charlotte had joined our group with a good deal of apprehension. She had been with us for 1 1/2 years (during which her abilities declined steadily) when we asked group members to write something that would be entitled "My Doctor."
Charlotte struggled mightily to write the following in an almost indecipherable script:
My life if my life was growing in going to growing—
My mother lost her first darghter when she was one hear and when I was born mother watched me although all the time.
I reamontay when my brother and I bosh my mother called the Docter and up the six flights and said was very sick. My parents worred a lot ad the Docter soften his and said do worred she will life for all time.
Charlotte fought despair with every word and gave up repeatedly, trying to read and explain her story to the group. Eventually it became quite clear what she was writing about. Her story was about her mother's fear over losing another child, the impact this had on Charlotte and her brother, and her gratitude to the doctor, whose voice she still remembered softening as he reassured her mother that she was fine and would live for a long time. "I was glad for that voice," she said with a smile. After reading the story she went on to explain that she and her brother did everything they could to conceal any sign of illness from their mother. This piece of information certainly helped me understand her stubborn unwillingness to consult with a doctor at various times over the 2 years that she was in the group. More important, it was a heroic act of recollection and self-expression at a level of emotional connectedness and specificity that was not readily available in other ways.
Charlotte's spontaneous verbal contributions to the group were growing infrequent at this point in her participation; yet here was an essential part of her life story that she was able to reconnect to and to communicate to us through the act of writing.
Through group members' participation and attendance, I realized that they looked forward to our meetings. They expressed surprise of what they remembered and satisfaction that they were part of such a group. The writing seemed not to remind them so much about what they could not do, or if it did, this awareness did not predominate. Of course, there were those for whom the frustration was too great, and even among those who participated eagerly, the time came when they could no longer write well enough to continue.
As the group flourished, I began thinking more about the nature of the experience and ways of explaining it. These musings led me to think about my own grandmother who had died shortly before we started the Lifelines group. When she reached a certain age, my grandmother started giving her possessions away. This was imperceptible at first but became obvious over time. It got so that I had to think twice before admiring anything of hers or even glancing too long at something lest I be required to take it with me.
Occasionally I would protest—but it was of no use. Her determination and the obvious pleasure she derived in this giving away were too great. She would say things such as "I want to see you enjoy this …" or "I want you to have this now." The objects she gave me covered the full range of the old-closet spectrum: a jazzy black suit of my grandfather's that fit me perfectly, cufflinks and studs inlaid with opaque reddish earthen scones, dishes and servers of every description, lamps, sea shell-encrusted salt and pepper shakers with missing shells, and dusty bed sheets deeply yellowed at the creases from being folded for 35 years. What she gave was what she had saved, and this was their value.
As she neared the end of her life, my grandmother seemed to understand that if you can give something away, you don't lose it. This, as it turns out, is as true of memories as it is of objects and is yet another aspect of memory that is often overlooked. Memories are, in a sense, fungible. Writing is a form of memory, and unlike the spoken word, leaves a mark in the physical world. As a form of memory, writing creates possibilities for remembering, for the sharing and safeguarding of memories not provided by talking. The writing group gave memory back to its members. They were transformed in the experience of writing from people who forget to people who remember. A member of the writing group once said that when the group was together "— we forget that we don't remember." This is a statement of cure, not of biological and cellular disorder, but of the human disorder, the disorder of loss of personhood brought about by Alzheimer's disease.
If the writing gave memory back to the group members, then the reading—the moment at which the entire group would fall silent and listen—returned something equally essential: the power to give. The thought content of people in the later stages of Alzheimer's disease is described in clinical terms as "impoverished." Alzheimer's disease is an illness in which the losses accumulate moment by moment and day by day. Giving reverses the tide and represents a refusal to be defined by loss. Members of the writing group regularly enriched themselves by giving to one another their most precious possessions.
As the writing became more difficult for group members, yet another important transformation took place. We began to re-read the old work and it became clear that in most cases, the members could not recall having written it and would not likely recall what they had written about spontaneously or be able to write about it with the same richness as they had in the past. We took great pleasure in this reading and in the re-discovery of old memories, however. Here was recollection in the literal sense of the word, a reclaiming through writing and reading of lost parts of the self. "I haven't thought about that in 40 years!" — how often we heard these or similar words while running the group, and what a deep sense of accomplishment and satisfaction they inspired in all of us. During these moments of writing and reading, long-lost memories of friends and family, strangers encountered on trips or at crucial moments, once-precious objects, feelings of joy and sorrow, lessons learned, all became threads of the fabric of life that sprang back along with individuals' sense of self.
A Fitting End
After operating continuously for 2 years, the group appeared to have run its course. Illness and cognitive deterioration were taking their toll. It became harder and harder to get the group members to write new material, and when they did, they wrote much less. We thought inviting family and friends to a reading would be a fitting end to our work together, and the group members supported the idea wholeheartedly. The group members could not choose which stories to read from among the many they had written and asked me to make the selections. Prior to our final meeting, I collected their stories and bound them in a book with their names inscribed on the front. When we met for the last time as a group, I returned their memories to them and watched as they leafed through the pages smiling, laughing, crying — remembering their "selves" and their stories. At our reading they recollected these memories yet again, and left their stories to be safeguarded by friends and loved ones, beyond the clutches of disease.
The challenge of putting Don DeLillo's observation about writing and memory to work for people in the early stages of Alzheimer's disease brought to light aspects of memory and the psychology of people experiencing memory loss that I knew about but had failed to put to any therapeutic use. I would summarize the most important of these aspects as follows: Writing is a form of memory. As a form of memory, its characteristics create some unique therapeutic possibilities for people with A1zheimer's disease. Because it presents another way of remembering, it provides an individual with additional experiences of being a remembering person and access to different kinds of memories. Perhaps most important, it returns to those whose memories are failing the opportunity to experience and share the memories they have. In this respect, the writing group transformed a weakness into a strength.
What was true of the writing was also true of the reading. In reading the written work, the insecurity of unprompted verbal recall (a factor that over time tends to discourage talking in this population) was replaced with something that is not only tangible and therefore more secure but also lasting. The group format seemed to extend and intensify these effects as well as to provide therapeutic benefit in more traditional ways. In a remark that beautifully encapsulated the acceptance, recognition, and sense of belonging found in the group, one of our members put it this way: "We may not remember everything, but we remember each other and I'm a part of everyone here."
A patient of mine in the early stages of Alzheimer's disease once said, "I feel like a picture that's fading; every time I look, there is less of me here. I almost don't recognize myself." Watching the group members in their struggle to remember, write, and read their work is a moving experience on many levels. One of these is surely our awareness that the picture is fading along with the sparks of recognition. This awareness lends a poignancy and triumph to the work with which one can identify. In this identification there is also a healing of the breach that separates us from people with Alzheimer's. We all know what fading is like, and we all know that our fate is not so different from theirs. The triumph is temporary; it is of this moment, but it is the triumph of life over death. If we do need stories to live, then these are truly lifelines, acts of writing that art life preserving.
The members of the Lifelines Writing Group have taught us about the power of writing and the nature of memory and memory loss. Their lifelines have also served as a means of dosing the psychological distance between the Alzheimer's and non-Alzheimer's world. Perhaps most importantly, they have demonstrated that there is a way to give meaning to the precarious station in life in which they find themselves, and they suggest a path for others in the early stages of Alzheimer's to follow; to live with memories; to give them to others; and to preserve in some form a record of who you are, who you were, and who you wanted to be in this world before it slips away.