Memoir and Memory Loss

Memoir and Memory Loss
Presented by: Tiare Newport, Ph.D. at the
14th National Alzheimer’s Association Dementia Care Conference
Atlanta September 11, 2006

Objectives:
• Using memoir to enhance bridges of communication.
• How to create memoir with AD patients and their families and caregivers.
• How memoir differs from autobiography thereby making it so suitable for those afflicted with memory loss.

When I wrote the proposal for this session, I was thinking I’d have an hour and a half in which we could actually craft different kinds of memoir. Fortunately we have many professionals present with numerous ideas for re-visioning communication with Alzheimer’s disease patients, including Arlene Astell, Maggie Ellis, David Troxel, and Virginia Bell. This is a really good thing! The last convention I was at, three years ago in Chicago, focused on early diagnosis. The pharmaceutical companies were salivating, tallying up the potential market of those needing lifetime prescriptions. I left the conference depressed.

Of course research is important.

Of course using medicines in a responsible way is paramount.

But, with the exception of a remarkable young woman I met during the conference who introduced a playful intervention to be used with AD patients she called TimeSlips (Ann Basting), I left the conference wondering whether anyone else was working on finding more ways to bring quality of life to the increasing number of people whose lives were being turned upside down by Alzheimer’s.

As you may imagine, I am delighted to be at THIS convention where the primary focus IS on bringing quality of life to patients and their families, even as medical research continues to do its important work of diagnosing, delaying, and eventually preventing Alzheimer’s disease.

In introducing my topic, Memoir and Memory Loss, I’d like to share a little about me. One might say that my story is a success story. I was my father’s primary caregiver for the last ten years of his illness. Even though those years were, to date, the most arduous and grueling of my life, my father managed to make it through the devastating process of forgetting to a place of contentment where he dwelled during his final year. Looking back at my journal accounts of that time, it’s clear that I didn’t join him in that place. I was stuck in fear, judgment, and guilt. I was depressed and plagued with heart palpitations. I moved from crisis to crisis. When the catastrophes ceased originating from him, I managed create chaos on my own; I ended up in a bad auto accident that kept me in bed for three months.

It wasn’t until I was writing my dissertation, which ended up being titled The Gifts of Alzheimer’s, that I became aware that although I’d remained stuck in a rigid mindset, my father had ended his days in a completely different place. I doubt HIS transformation would have taken place had he remained solely in MY care. Fortunately, we had the privilege of bringing in exemplary assistance from a Colombian family who lived with us during Dad’s final year. In retrospect, it was THIER acceptance of my father, in his advanced stages of the illness which, with time, allowed ME to suspend my horror as my father increasingly needed mental, emotional, and physical assistance.

Pauline Boss’s work on Ambiguous Loss addresses the difficulty of tolerating situations in which we feel out of control for extended periods of time. For the most part, the propensity is to distance ourselves from the situation or shelter ourselves with denial. Being out of control is not something we respond to very well in our culture. From this perspective, is it any wonder that Alzheimer’s pushes so many of our psychological buttons? Although that is not what I am here to speak about today, it is important that you understand my background and my bias.

Depth Psychology is a broad term that refers to any psychological approach that examines the hidden or deeper meaning of human experience. The theories and therapies, pioneered by Pierre Janet and C.G. Jung with contributions by Sigmund Freud and Alfred Adler, have been extended in Joseph Campbell’s mythological studies, Marion Woodman’s bodywork, and James Hillman’s Archetypal Psychology. Depth Psychology views symptom as communication from Psyche. Where Behavioral Psychology aims to rid the individual of an undesirable symptom, such as the fear of flying, and medicine’s goal is to cure the body of disease, Depth Psychology delves into the presenting symptom, let’s say memory loss, and asks why this particular symptom has emerged for this particular patient, at the individual level, or why this particular illness is manifesting so widely at this particular time, at the collective level.

Do you see the difference? When we get curious, ambiguity becomes tolerable because we regain control in a different way. Instead of trying to manage a situation that exists outside of us, with a change of perspective feelings of hopelessness can turn into inquisitiveness, leading us into action rather than entrenching us in immobility. Remember the serenity prayer? “Grant me the serenity to accept the things I cannot change, the courage to change the things I can; and the wisdom to know the difference.”

So what does this preamble have to do with memoir and memory loss? Before we can consider the value of engaging in memoir writing with Alzheimer’s patients, there are preconceived notions that we have to get out of the way. As Al Gore so succinctly put it in his documentary film, An Inconvenient Truth, he has spent years identifying people’s objections to acknowledging the reality of global warming which, for the most part, are imbedded in fear, guilt, and denial – very similar to AD.

• How can we consider entertaining the idea of memoir when we are so overwhelmed with the daily issues of crisis and safety?
• How can someone who can’t remember their name reliably remember a story from their past?
• How can someone whose attention jumps from a shadow memory to a bird flying by the window be expected to tell a coherent narrative?
• How can a mind that no longer works with any accuracy be able to move a memory through to any kind of new awareness?
What are the underpinnings of these objections?

Running in the background of every caregiving situation is a family history complete with fulfilled and unfulfilled expectations. What do we do with our anger, when the very parent that we may be in the process of forgiving for abuses received in childhood, seemingly has control over our life again? How about own vulnerability when faced with the vulnerability of the very person who has been our rock of Gibraltar? Is it surprising that we react with denial and/or depression?

In my case, what were the obstacles I needed to overcome? I was angry, frightened, and subsequently filled with guilt as I watched my father deteriorate from the gentle-hearted, level-headed individual I knew him to be into an angry, confused, and feeble old man.

I wish I had overcome some of these obstacles sooner. But until the car accident, I simply was trapped in anxiety. Each day was about survival. There simply was no room for creativity, simplicity, or enjoyment. After the accident my role switched from caregiver to one of being cared for, and gratefully, things changed. Having relinquished full care of my father AND me to the other members of the household, the Columbian family, my husband, and even my children, when I was able to rejoin the caregiving team, I followed the rhythm that was in place rather than returning to my own frantic style. I’m glad to say that there were some peaceful days before my dad’s death in which we simply enjoyed the squirrels climbing in the tree outside the living room window or the sun on our skin as we sat in the garden watching the flowers dance on the gentle summer breeze.

My father has been dead for over ten years now. But the disease still swirls around me. I spent five years of study focusing on the mythological and depth psychological aspects of the disease. During that time I worked with hospice and home health care tending elders, some with dementia, and some with Alzheimer’s. My current work in the field is devoted to writing memoir and helping others record their stories.

Memoir works with this population because by definition memoir is a written record of people and events as experienced by the author. The word “memoir” is from the Latin memoria, meaning “memory.” As a literary genre, memoir forms a subclass of autobiography although it is actually an older form of writing. Unlike autobiography, memoir is not a formal personal history, but an assembly of memories. Gore Vidal adds another clarifying point: “a memoir is how one remembers one’s own life, while an autobiography is history, requiring research, dates, and facts double-checked” (Palimpsest). Memoir is about what can be gleaned from a slice of one’s life rather than a life in its entirety.

I recently contacted Tracy Apple who creates Heirloom Portraits. These portraits are first-person accounts gathered through interviews. Tracy uses a tape recorder and guides her storyteller to capture accounts of historical information, challenges, triumphs, key people, philosophies, and lessons learned along the way. As we talked about her work, she relayed that she has not felt successful working with Alzheimer’s patients and their families. The storytellers wandered, repeated stories, and mixed up chronologies. In short, the facts were no longer reliable. Families, eager to capture the linear events and accomplishments of a loved one’s life, became frustrated and dissatisfied with the work. I have a feeling that the work was frustrating because family members, harboring memories of their own, no longer agreed with or trusted the storyteller’s version. Their desire for accuracy trapped them in wanting an autobiography and what they were getting was memoir through the filter of Alzheimer’s. Tracy did have one success story to share. She was involved in a community that put together news articles, photographs, and collective memories. The end product was titled Remembering Rebecca, and all involved in the project found the process and result connecting and satisfying.

My step-sister, Jennifer Larsen, has started a similar project to help her and her family remember her Grandmother. A Remarkable Life is a collection of family memories that has become a work in progress. In the forward she writes:

Kind reader,
This is just the first edition. I welcome your thoughts, memories, stories and images. Please email your additions as I continue to compile a second, expanded edition. Photos and other memorabilia may be sent by snail mail.

Another example I have is simply titled My Mother’s Memories. This rough manuscript contains stories that 92 year old Rose Romano Simcox dictated to her daughter. Also included are some of Rose’s favorite poems, newspaper clippings, and memories, in her own hand. Her daughter, Jane, who is now in her 90’s loves to have these stories read to her. As I read them they ignite sparks in Jane’s disintegrating memory and as she tells related stories, I write these down for the next generation.

It doesn’t really matter who we are or how old we are. Throughout life we continue to ask the same questions:
• Who are we?
• How do we become who we are?
• How do our lives fit into the greater whole?

We spend our lives trying to make meaning out of our story line. Doing so gives us a sense of identity, and gives us meaning and direction. This personal mythos is updated throughout our life-time, especially when we are faced with major changes, such as accidents, illness, marriages, divorces, major moves, deaths, promotions, retirement, decreasing abilities in old age . . . .

When someone is afflicted with Alzheimer’s, it’s easy for those of us shut out from that person’s thought process to imagine such questioning is no longer going on. But let me tell you a story that made me imagine things differently. Claudia was 96’s when I met her. I visited her weekly for nearly three years in which time she moved from living independently to assisted living and finally into a nursing home.

During our visit each week Claudia inevitably would tell me the story of her husband’s death. He didn’t want a funeral, and as per his instruction, Claudia took his ashes and scattered them in a prearranged location near Lake Tahoe. She told this story again and again, but as the years passed the attitude with which she told the story changed. In the beginning it was with pride at having been able to fulfill her husband’s wishes. But much later on doubt and fear dominated. Bit by bit, telling by telling, I was able to piece together that Claudia’s beliefs about cremation and burial were quite different from her husband’s, and as she neared the end of her life perhaps she retold this story because she was frightened as to how she might be judged after her death.

The story that Claudia’s family had heard many more times than me, the one in which they would silence her by saying, “you’ve told that story a million times,” turned out to be pivotal for Claudia. She was trying to make peace with her involvement in her husband’s cremation and lack of a funeral and telling the story over and over again was the only way she knew to do so. Thankfully, in the end, the family was able to hear the issue and be supportive of her working the story rather than being frustrated by it.

Around the same time I had an experience that cemented this teaching for me. I don’t remember my story, but it became one that I started repeating to my children. We were all hypersensitive in those days. My father had died a couple of years earlier; I was deep into my studies. My research, and the media, emphasized heredity as a predisposition to the illness. When my son, clearly vexed, said to me one day, “Mom, do you know how many times you have told us that story?” I burst into tears believing this must be the beginning of my end. But my daughter perceptively came to the rescue when she said, “You do tell the story over and over. Is there something in the story you want us to understand that we just aren’t getting?” And she was SO right! There was an element to the story that I desperately wanted to communicate that just wasn’t coming across. In that moment, I was able to pull the thread forward and be done with that story, thanks to my daughter’s compassion and perception. This experience, coupled with Claudia’s, forever changed my insight regarding repetition.

Now, whenever anyone starts to tell a story, I listen with an inner ear as well as an outer ear. It is what this inner ear can hear that gives memoir its value, not the factual details of how this or that happened but the storyteller’s experience of that happening. Gene Cohen’s presentation this morning eloquently cuts through to the place where so many of us have gotten stuck - in helplessness and fear. There ARE treatments available for EVERY disease. We just have to keep experimenting and expanding upon the interventions that DO work. His research brings us back to remembering the necessary simplicity of humanization.

The traumatization of AD’s, with its signature symptoms of memory loss, language confusion, and ego disintegration, strips us of communication styles we traditionally rely upon. Since interactions between people are significantly influenced by what we know about each other, memoir is an intervention that has the potential to restore connection for all involved. Participating in the creation of memoir, or simply reviewing a previously created memoir, energizes all parties involved. If I hadn’t had Jane’s mother’s memoir, I might not have known how to start to build a friendship with her. Because of those stories, however, I have created a friendship with an elderly woman who is isolated much of the time. We both look forward to our weekly “interviews;” that’s what she like to call them. It gives her a sense of purpose, of meaning. “What would be the most interesting thing to other people?” she sometimes asks before she launches into her stories. Clearly the stories she tells are the ones that are of most interest to her. Like Claudia there are themes she works over and over again. And I listen. Maybe someday, as with Claudia, I’ll catch the inner meaning. Maybe not. I don’t know that this matters. What matters is that she likes to tell the stories and I like to listen.

Each week I meet up with Jane in the dining room where she eats her meals with four other women who also reside at the assisted living facility. One day last month when I arrived, one of the women was missing. “Where’s Victoria?” I ask. “She’s gone,” I’m told, sent to another place.

“Victoria’s family thought this place wasn’t taking good enough care of her,” Margaret, tells me. Margaret doesn’t have dementia. Often she acts as a translator, filling in bits and pieces that the others leave out.

“Did you have a chance to say goodbye?” I ask looking around the table. My question is met with a sad, helpless silence which I take to mean “No” and in which I can only imagine the sense of doubt and resignation. Doubt about the quality of care they are receiving and resignation that life just happens and they haven’t got a say.

I found out later that Victoria had fallen and needed to be moved to a nursing home. Of course Jane, who was Victoria’s best friend, knew, the family told me. Of course she said goodbye. But when I asked her, “Did you know she was going?” Jane thought for a while before she answered. She thought Victoria was going for a visit, but then she didn’t come back. Then Jane began to talk about how everything in the universe is round – the earth, the moon, the stars; the day, morning, noon, and night; the seasons; our feelings, passing from ups to downs. She says, “You miss all the activities you used to have and all you can do is think about how everything in the universe is round.”

After dinner, I take Jane back to the room she shares with her cat Hollyberry. Jane has macular degeneration and cannot see very well. As I look through photographs that her daughter-in-law has left for me, Jane strokes Hollyberry. I describe what I see in the pictures. Sometimes she can remember but mostly she just listens until something in my words triggers her and she start in with one of her stories.
I come around each week for tidbits of wisdom. Another roundness; just as I bring meaning to her life, she brings meaning to mine. Memoir is the vehicle we use to be with each other. It’s a fine tool. It feeds her. It feeds me. And when she’s no longer here, it will feed the next generation.

As long as we don’t get caught in the literalness of what memoir is suppose to be, or caught in the fear and judgments we have about memory loss, there are lots of ways to create memoir. It can be a collection of favorite sayings or poems. For somebody who loves music or loved to dance, it can be a collection of songs. For someone whose eyesight is holding, photograph collections, newspaper clippings, and pictures of famous people or places can ignite sparks of recognition. You may only see a smile or a nod in later stages of the illness, but when we learn to let go of communication having to take a certain, familiar form, suddenly a whole new way of communicating opens up. Some people may be able to make collages that you can then hang on their walls. Or you can make collages for them with pictures from magazines that they have sparked their interest. Or you can read stories, or tell stories, or if they are still speaking listen to their stories. Or tape record them and play the recordings back.

For me the key seems to be in enjoying my time with them. This gives the person I’m visiting a sense of purpose and meaning. This is the enactment of Eric Ericson’s theory of generativity. The older generation must look back, take measure of their life AND share something of perceived value with younger generations in order to feel fulfilled. This is one of Jane’s roundnesses. In my visiting her, I give her a feeling of purpose AND I receive the same. Some weeks its hard to drop out of the fullness of my middle aged life into the slowness of her end of life, but when I arrive its as if I’ve stepped out of time and into the timelessness of a precious, meditative moment. Upon leaving, often I am euphoric my heart is so full. Jane asks, “Will you come again?”

“Are you kidding? See you next week.”