My mother’s physician said to me recently, “Listening to your mother is like coming across cathedrals still standing in a bombed-out city.”  He was referring to her extraordinary use of words even in the late stages of Alzheimer’s disease.  It is those “cathedrals,” those hints of her lost self, that keep us alert as we grope with her in the bleak landscape of her current existence.

We three sisters have all come to talk with you about the experience of our mother’s illness because we each have a different perspective on the same events.  There is no one linear story with a beginning, a middle, and an end.  You will hear events and dilemmas repeated.  What we bring to you is a portrait of a family in crisis, a portrait made three-dimensional by coming at it from different perspectives.

Because we are not poor, we have had, you might say, the "luxury" of experiencing grief and emotional loss more than financial devastation.  Because we have each other, the care has not fallen to any one of us alone.  Had we been just one daughter doing all the caretaking alone, had our father lived to suffer this period with us, had we less flexible work situations or less supportive families and friends, our stories would be different.  Perhaps the greatest good fortune of all is that we each felt close to our mother before her illness and had not suffered the terrible rifts that often characterize mother-daughter relationships.

It is our hope that as we integrate photographs and words, artwork and narrative, as we share our diaries and the words of our children, you will know more about the factors that have helped us each to live with and learn from the stress of our mother's illness.  We will try to describe how we learned to shift our personal centers of gravity to support our mother who is no longer herself, who has figuratively and literally lost her balance.

Fitting all of us together into a family history isn't easy.  A neurologist who recently evaluated our mother's condition made the following valiant effort when she strung together this funny list of attributes.  She wrote: "There is a family history of twinning, prematurely gray hair, allergies, uterine fibroids, and artistic talent.”

Remarkably, the neurologist’s odd and humorous phrase relates well to each of us and to our mother.  However, you’ll need to know a little more about our background to be able to follow this narrative.

As our parent grew older, they were determined to remain independent, to have good relations with the three of us but not to need us.  They lived and worked in their own house in rural Westchester County, New York, for the last twelve years of their active lives.

Two years ago our father, Alfred, died at age seventy-nine, after a relatively brief but devastating battle with liver cancer.  He had been a lawyer (before fleeing Nazi Germany), then a prominent businessman in the area of classical music recordings, and then in a retirement, a travel agent.

Our mother, Marjorie, was until ten years ago, a practicing child psychoanalyst.  She wrote and lectured extensively about twins and about the dynamics of family relationship.  She was a pioneer in her field and one of very few people writing twenty-five years ago about the influence of fathers on the development of daughters.  We find her quoted widely today in texts abut women’s emotional development.

Marjorie experienced the early and middle stages of Alzheimer's disease over a three to five year period prior to our father's illness and death.  Dad's reaction to her illness was typical of many spouses.  He insisted on caring for her himself during this time.  His insistence was absolute.  He gave unstintingly of himself, but at the same time he denied many aspects of her illness and refused all of our efforts to help.  We had no way to participate, no way to provide needed care for her or for him.

He had always needed to be in control but now this need made him tyrannical.  When he became ill, the thin facade of normal life that he had managed to maintain for them both crumbled and fell away.  He was full of rage at his loss of control.

During the summer of 1988, we sisters each in turn became caretakers to our parents, one suffering from terminal cancer, the other from Alzheimer's disease complicated by psychotic episodes.  Joanne left her home in Ann Arbor, Michigan, and was an artist in residence at a school in New England throughout the summer.  Joanne's daughter, Julia, attended the school's summer program.  What might have been a restful and productive time for Joanne's own art work or intimate time with her teenage daughter became a period of intense involvement in the progress of our parents' illnesses.  Instead of the respite from university teaching that she looked forward to, she became a vigilant caretaker.

Barbara made the journey from Vermont countless weekends, leaving her husband, her five-year-old twins and her work as a therapist.  I had been away in July but arrived at my parents' house in early August.  By the time my father died in mid-September, I had spent six weeks at their house under great strain.  I could no longer eat or work or rest.  Visiting nurses helped.  My husband, my three adult children, and my sisters had helped as best they could, but no intervention was a match for the combined force of cancer and Alzheimer's disease in one household.

I cannot describe this period to you with words alone.  To share the feelings, I will show you the first of my images, a woodcut print.  Beginning with this image, called That Desperate Summer, I shall use my prints and drawings to cue my remarks.

Here, my father lies near death, his dog beside him.  The dog, Brandy, is central to the configuration and was central to my father's well-being.  His paw rests on my dad's chest.  No family member got as close to my father's heart as Brandy did during that desperate summer.

In this same image, my mother appears on the left, adrift in a different space, near but utterly disconnected.  Here you are witness to my mother's confusion and depression.  Her own fear eclipses my father's presence.  She no longer understands who he is or that he is ill but alive.

Her extreme distress simplified, at least superficially, our decisions about her care.  After our father died, it was clear from her violent and paranoid outbursts, from her extreme depression and absolute sleeplessness, that we could not put any kind of care system together for her that would allow her to stay in her own home.  Even if 24-hour care would have been feasible financially (it wasn't), we would have been forced to manage such care from a distance.

We decided to bring her to Boston, near me, for a complete evaluation.  The evaluation ruled out all causes of reversible dementia and left us with a probable diagnosis of Alzheimer's disease.  Subsequent neurological exams and MRI testing confirmed this.  We function with this as the primary diagnosis, monitoring at the same time factors like depression that complicate the picture.

Her care is managed chiefly by a geriatric psychiatrist whose specialty is pharmacology and who fortunately believes in using as little medication as possible.  The goal has been to limit agitation and depression.  A kind of stability has been achieved.  By "stability" I mean that the extremes have been taken away.  She is not lethargic and she is not violently agitated or paranoid.  She is no longer a danger to herself or others.

My awkwardness in telling you that she has lived for two years in nursing homes is revealing to me.  It is still hard for me to reconcile.  But I could not have managed without the option of nursing home care.  My love for her would have been obscured by the enormity of twenty-four hour a day caretaking.  She is in many ways "better" now that she lives in such a setting, if by "better" we mean less paranoid, more calm, more able to take comfort in our visits.

There have been some wonderful, skilled, and caring people in both nursing homes where she has lived.  Nonetheless, the life of a person in today's typical nursing home is a very depressing existence, and the limits of life for her have their profound effects on me.

My mother's doctors are always quick to ask a question that you might also be asking at this point: "For whom is the nursing home depressing, for her or for you?" "Do not," they say, "assume that she is responding to things now as you do.  Her responses are impaired and there is need for a simplified environment."

The sorting out of that question, "What is affecting her, what is affecting me?" is at the heart of what I've been exploring in my art.  In trying to answer that question, I find myself asking, "Who is she now?" What is my new relationship to my mother, once an articulate woman with both personal and professional caregiving skills, now a bewildered person who is increasingly fearful.  She is a mother who cries easily, feels lost, misperceives herself and her environment.  She has no safety judgment, cannot make decisions, and is completely dependent on others for being bathed, toileted and dressed.

A photo collage called Grief Without Memory is one attempt to explore that question.  Grief has been described as "a process of realization, of making real inside the self an event that has already occurred in reality outside." But what happens when the death, as in Alzheimer's disease, is a slow and unending series of losses—when there is no one moment of death but ongoing life in a state of continuing loss?

Grief Without Memory is an image of myself (above), dreaming with an ancient grieving figure showing through the transparency.  The image (a photo of me by Joanne) is meant to set up the question, "Whose grief, whose memory?" The rice paper grid with torn, irregular edges is to me like water, or like memory, or like a dream running across and under and around the images.  The black edge is there to anchor the whole and the black fragment to hint of death.  The central focus is the photo of my mother, both sharp and clear and also fading/transparent to tell of the dread of her fading. . The birth image with "twins" (or female attendants) is a hint of optimism and suggests the shared experience of being mothers of twins.  It also refers to daughters caring for their mother.

These first images, hers and mine, don't overlap, and mine is above hers.  This placement suggests separateness and survival.  I think of the free-standing repeat of the grieving figure as connecting us.  When I first saw this tiny earthenware figure with its forceful gesture, I saw myself in it.  I also saw my mother.  I felt that it was a portrait of the two of us combined.

Recognizing the shared feelings represented by that little figure helped me to grieve and to begin to move toward acceptance little by little.  This piece was the closest I came to articulating loss, my sudden loss of both parents and my mother's loss: she had all but "forgotten" Alfred, husband of 53 years.  So it is about memory and loss of memory and grief either way.  "Why is the pain so great, exactly as if I were a child?" it asks in barely visible handwriting throughout.

I turn now to the image called Lost Self.  This is an image of separation of a woman's mind from her own understanding and feeling.  It is an image of loss of connection, of depression, and a kind of death.  And yet, at first glance, it is benign, if not beautiful, almost like an angel with a strange animal behind her.  Is this an image of my mother?  Where then is even a hint of the tall, elegant person with her air of authority and slightly intimidating demeanor?  Who is this hovering presence without identity?  Perhaps it is an image of me, of me fleeing from my own experience.

Lost Self exists in a second variation.  This more abstract version was created at the beginning of the period when my life began to be divided between my own needs and the needs of my mother.  Now, almost two years later, her customary greeting to me when I come upon her wheeling through the halls at the nursing home is, "How did you find me?" She is so profoundly "lost" before and after my visits that she can't imagine that anyone ever knows where she is.

My own struggle seems to be to accept my mother's condition as one of many variations of the aging process.  Intellectually, I can accept that my mother is old.  She is eighty-five.  She is no longer well, can no longer work or swim or garden as she did even five years ago.  She is old.  She cannot do at all what she once did with ease.

But my struggle is not intellectual, and it is intensified by my proximity.  She is near me because I am the one daughter whose children are grown.  I am freer than my sisters to give my attention to her.  This proximity is both a gift and an enormous responsibility.  I am nourished day by day, visit by visit, by the feeling that my presence makes a difference to her.  But I am also never free from the feeling of needing to choose, to negotiate between her needs and my own.

I see myself as caring for a relationship, a relationship that is greatly diminished and more and more fragile.  To keep this relationship alive is not merely altruistic, not self-sacrifice.  It is a source for me of feeling better.  It is a way of becoming more knowledgeable about what is really happening.

Her Moorings: A Tangle of Reeds and Torn From Her Moorings are other recent images about her being lost, or more accurately about my awareness of how lost she seems.  I Am Her Scream is an attempt to make visible her inability to find words for feelings.

Her excellent vision and hearing now seem like a curse, like windows that might be better shut so that she could rest, shielded from her own confused perception and awareness.  This recent pastel drawing called Trapped is an image of how

I imagine she feels when she is tied in bed.  She is writhing.  She is making a low moan as her feet kick the air.  I find it hard to look at this distorted image of her, of me.

Having taken you with me by sharing these dark images, let me focus now on the "light," on the kinds of support from family, friends, and nurses that have made this period not only tolerable but one in which connections have felt particularly sustaining.  I want to tell you of the role of the Alzheimer's support group and of individual counseling.  All these supports have changed what could have been complete catastrophe into an experience of growth and discovery.

The image, Myth of the Fragile Woman and the Hungry Beast, is an attempt to escape from the "beast," the myth that I must do it all.  No one has helped more than my husband, David, but I want to focus on the completely unanticipated role of a male friend who came into the picture in an odd way.

Warren needed work and had an interest in being a companion to an older person.  We had never thought of such a possibility, and it wasn't simple to accept this offer.  To involve a friend as a paid caregiver who would be a companion to my mother brought up difficult questions and conflicting views among us.  The questions were, "Under what circumstances is it all right to share family distress?  When is it okay to accept help from friends?  When is it overstepping the bounds of friendship?"  My need was so great that I was willing to take the risk, not knowing at the time what kind of companion Warren might be for my mother or what his getting paid to help us might do to our friendship.

As the situation has evolved, his humor, and his perspective as a stranger to her, have given him a useful distance at the same time that earlier tragedies in his own life have given him sensitivity and empathy.  He is the one caregiver other than nursing staff and doctors who never knew her before she was a patient with Alzheimer's disease.  The nurses tell me again and again how helpful he is to my mother.

He enjoys being with my mom.  His enjoyment is different from mine.  It isn't compromised by an immediate sense of loss, though Warren knows about loss.  He phones me from time to time or writes charming notes about looking into a mirror together with my mother, about the wicked sense of humor he still finds lurking in some of her remarks.

This fortunate friendship and odd business relationship has within it two compelling discoveries: the usefulness of "outsiders" and the importance of not underestimating men's roles as caregivers.  Warren has visited my mother at least once a week for almost two years.  Those days when she has a caring visitor other than me are an unimaginable respite for me.

Perhaps the groundwork for this discovery of men caring for others came from an old photo that has been in my mind for many years.  This image is of two brothers.  The little one is my father.  He grew up to be the lifelong caregiver for his older brother, Joseph, who was blind from birth.

Men have helped, but nonetheless I find I have never needed or loved women as much as at this moment.  In part this love feels diffuse and unfocused because my mother is not there to give or receive it.  But in large measure, love and other feelings have been liberated by the caring and wisdom of a woman therapist and by my women friends, my sisters, and my daughter.  They have asked me difficult questions.  They have been attentive without stepping in to function for me. They have helped me to understand, by example, that love is not just giving and is not best shown by being selfless.  I have been learning, with their help, to accept vulnerability, conflict, and grief.

Beyond personal counseling and the help of friends, many had suggested attending an Alzheimer support group.  I had never been to a support group of any kind before I was directed to the Alzheimer's Association of Eastern Massachusetts.  I had no conception of how it could help to hear what others were coping with.  Now I could speak at length about the solutions learned from family members whose expertise comes from their own trial-and-error discoveries about managing.

At the support group, members share strategies for dealing with a family member's memory loss.  We learn to tolerate our own limitations; and we support each other during difficult transitions, such as a family member's move from a day care to a nursing home setting.  The support group offers more than problem solving.  It has been an opportunity to develop empathy for myself through hearing other people's brave disclosures of pain and sorrow.  I've also learned from the example of the warm, insightful, and articulate woman who is the group leader.

She calls on each of us with a directness that evolved from her having come to terms with the death of her young husband,, a death through Alzheimer's disease.  She makes a family of us, a group of disparate people, each suffering in his or her own way.  She connects us with each other.  And beyond that, she calls on us to speak at public policy hearings, to share our own triumphs and losses.  It is she who helped me find the courage and the voice to speak to you by asking me a year ago to speak in a public setting.  It is she who chose the Lost Self image for the cover of the November 1989 Alzheimer Journal and later for a fundraising card.

Contributing these images is helpful to me.  It is my way of taking action on behalf of countless others struggling with the same problems, others who have neither the funds nor the family support to lighten the emotional and financial weight of caretaking tasks.

And part of this greater feeling of well-being and connection to other women has come through the writing of women, novelists like Virginia Woolf, biographers like Sarah Lawrence Lightfoot, and practitioners in the field of women's emotional health.  I have found particularly helpful the Working Papers from the Stone Center for Developmental Services and Studies at Wellesley College, written by Drs.  Judith Jordan, Irene Stiver, and Jean Baker Miller.

Recent images are of transition and acceptance.  I feel myself to be in a period of transition, a transition helped by the opportunity to talk to you.  It is a help to have this opportunity knowing in particular that many of you are nurses, the very people in a position to respond with tolerance and protective care to people like my mother who suffer from dementing illness.

Your role is different from family members and yet has in common the importance of not losing sight of the humanity of a person no matter how little they are able to express themselves.  You have helped me every time I hear you speak to the person moaning in the hall, speak and not just act upon them.  You have helped my mother or someone like her every time you act out of your greatest sense of her potential.  Even though she can't walk well one day, you are willing to help her try again the next.  You have tolerated my accusations, accusations of carelessness or neglect, knowing that you are on the front lines in a battle where the enemy is the disease.  You understand that my anger and my frustration are not meant for you but come out at you nonetheless.

Transition and Dream of Recovery are images that are finally hopeful.  Even a bit of color, of blue and lilac, has begun to appear where before the images were dominated by black, white, and an alarming red.  And if the dream and recovery are finally mine, and not shared equally by my mother, then the job ahead of me is to learn to live with that difficult reality.

From time to time I can laugh now, not only about other things, but about this long, stressful period.  I can laugh with my mother when something strikes us funny, and humor arises in the strangest places.  After four hours in a hospital emergency ward, waiting for a doctor to x-ray my mother's hand that was broken in a fall, the doctor finally arrived and addressed a question to my mother.  "Well, Marjorie," he said, "'Can you tell me how you broke your hand?" My mother, who had been more "okay" than I was during the long wait to be seen, looked straight at the doctor and said, "Doctor, I really couldn't tell you how I broke my hand.  I wasn't there at the time." I laughed at the odd and touching truth of her statement.  For a moment we were laughing together, relating to each other and to the moment.

And such is our relationship as we enter the third year of her fragmented life in our midst.  Even as she is more often "lost," there remain moments when we are profoundly connected.

Part II

Joanne Leonard, Professor of Art School of Art,

University of Michigan

"Romanticism is ultimately fatal."

Work Illustrated: Romanticism is Ultimately Fatal, Photo Collage by Joanne Leonard

You may be puzzled by some aspects of this account of daughters struggling to care for a mother with Alzheimer's disease.  This account comes straight from the heart, so to speak.  It is little tempered by after thought.  As written, it may seem strangely lacking in an analysis of what underlies our behavior, our assumptions, the roles we took on, or the medical, institutional, and family systems within which we operated.

The keynote remarks of Rhetaugh Dumas, which opened this conference, helped me formulate my thoughts on the omission of such overview and analysis.  She pointed out that all of us struggle with the institutions that frame our activities, and most of us suffer disappointments when our needs are only partly met by the society and the institutions on which we come to depend.  Just as in Rhetaugh Dumas' examples of those in power and those who struggle for power, my sisters and I have sometimes turned our anger and our struggles against each other, and additionally, each of us sisters and my mother have been locked in struggle against Alzheimer's disease.

There has been little energy left over for changing the framework within which we came to operate—the system of American medicine, nursing homes, and of isolated family units, not to mention the economic systems of health insurance and Medicare.  It is our great good fortune to be making these comments in the context of your conference on the Politics of Caring, where enormously informed overviews and cogent analysis abound.  Having said those words of preface, let me turn to the narrative of my side of this triadic account.

It might be said that any life that was lived in health for eighty years has to be seen as a life of great good fortune no matter what the circumstances of its eventual ending.  And so it is, that my mom has had a very good life.  Nonetheless, each of us has a personal mythology of expectations of life, and my mother's present circumstances fit with neither her own nor her daughters' hopes and dreams.

In 1972 I made a photo collage and titled it "Romanticism is Ultimately Fatal." To me, the knight in shining armor represented rescue and the promise of "happy ever after"—a promise vaguely absorbed in girlhood, with which I was. as I made the work, trying to come to terms.  I felt at the time that I was often a victim of my own expectations, which were so wildly romantic and beautiful that they were doomed to failure.  I have had twenty years and the pleasure of the work's inclusion in many publications to suggest I had mastered that overly romantic view and come to terms with reality.  That I have not ended the struggle to balance fantasies and dreams against reality was never more clear to me than as I worked to discover what I might say at this very presentation.

As I pushed myself to begin preparing my comments for our presentation, for quite some time I came up against a brick wall.  Though Elly and Barbara got on with it sooner than I managed to, each of us has struggled tremendously with putting this private matter of our mother's dementia into a more public forum.  We three sisters are used to succeeding: working hard, taking thoughtful steps, overcoming obstacles, and arriving at our goals.  But now we have failed; on the level of wishes and dreams we have failed and are doomed to continue to fail. one cannot help, as one loves and cares, to dream of rescue—in this case rescuing a loved and ill parent from the terrors and destruction of a dementing disorder.

Over the process of caring for my mother has hovered the black shadow of our earlier failures to reach and comfort our father.  He was truly mortified at what was becoming of mom, who had declared all her life, especially when confronted with a forgetful older person, "shoot me if I ever become like that." He acted to protect her from any confrontation with the reality of her disease.  But his denial cut him off and had a terrible cost: he was angry beyond all imagining.

He had lost so very much, years ago, during Hitler's holocaust and now his loses were final—his loss of companionship of his beloved Marjorie at the very time that he was dying.  He died hating all the world for the same failure we now face: failing to stop this dreadful process of my mother's loss of herself.  Our loss of him was possibly more complete than many a death, for he took to his death all the love held had for us, declaring for weeks on end only his disappointments.

We had a wise and loving mother who knew how to give great comfort and who protected us during many of life's harshest moments.  Yet at perhaps the most needing moments of our adult lives, the time of my father's death amid cancer, fury, and despair, our mother had, through the process of her dementing disorder, become more certainly lost in the fog of her disease.

Though when we are rational, we know mom is certainly not accountable, we are angry at our loss of her.  Anger and how women deal with it, in a society that finds women's anger unacceptable, surfaces as a topic nearly anywhere the subject of women and their behavior is discussed.  It is a very difficult subject in our family as in many.  But you will sense that it is under the surface in much of what I will relate and might well be looked for in any situation of illness, which like our own situation, brings so many disappointments.

As you hear of our struggles with what we wished for and what was possible in the care of our mother, you may notice that none of us follows through on thoughts of forgoing our professions, of giving ourselves over completely to caregiving.  Our own mother had divided her time between mothering and professional life for our entire lives.  She gave us a sense that professional life mattered.  Though we are proud of carrying on in our own professional worlds, we are each, nonetheless, subject to fantasies of being the ever present caregiver and are rarely without disappointments in not matching those fantasy images of "perfect" caring.

In the earliest months of my mother's widowhood, I found myself traveling to Boston from Ann Arbor, Michigan every three to four weeks, the frequency only restrained by finances and job—my daughter seemed to enjoy her best friend's household and was invited to stay there when I was away.  I began making plans ever more grand, offering to come to Boston, to adopt my parent's dog, to take my mother in my own home.  I seemed to forget about being a single parent and to want to behave as if my mother were all that mattered, to forget my child, job, everything!  My sisters reminded me that I was not looking at the whole picture.  Even though I regained my balance, never actually acting on these ideas, sometimes I nearly lost sight of what was real or possible.

What I continued to feel was a great need to act, to have a role in my mother's care. Eventually, I came to focus much of this energy on discontent with the nursing home and its inadequacies.  My visits to my mother were an agony filled with observations of everything that seemed wrong and might be better.  This nursing home had some terrible problems, but was nevertheless one of the best available in the Boston area.  Elly saw everything I saw.  She too was in pain about the problems.  Nevertheless, she began to know the staff.  She built a fine rapport with some nurses and staff upon whom she and my mother could depend.  Elly saw the good as well as the bad.  I could see almost none of the good—could see nothing of what was dependable and human—only the bedlam of crying patients and my mother's sadness, her awareness of being trapped and helpless and humiliated.  My suggestions for minor improvements landed like assaults on Elly.  I might see and mention something which could be improved about the situation, but it would fall to Elly to follow through if any change were to take place.  Anything which I focused on as needing change seemed to become a criticism from me of Elly—of her failing to do enough.  I understood how much she was already doing and still, I could not stop myself.  I wanted to make a difference.

I made inquiries in my own area.  I went to Alzheimer's support groups and came up with more (unwelcome) suggestions, which only served to alienate and overwhelm Elly.  Barbara became Elly’s advocate.  She adopted an attitude I sometimes called "hard-boiled," but which also contained helpful realism.  She would say, "There is only so much anyone can do, none of us can ruin our lives over this.  Let go.  We are already doing the best we can."

Meanwhile I discovered that nearby to me in Michigan was one of the best homes for Alzheimer's victims in the country.  A model program for Alzheimer's patients called Wesley Hall, set up by University of Michigan, existed at Chelsea Methodist Home.  There, patients are not restrained, as my mother sometimes is, and the emphasis is on creating an environment as much like home as possible—the philosophy emphasizes retaining and retraining ability at daily life tasks.  There was nothing like Chelsea’s Wesley Hall in Boston.  I was sure that part of my mother's apparent decline was the climate of helplessness in which she lived—that she would thrive at Chelsea—but I understood the many reservations and "what ifs" my sisters raised.

In order to press further with my idea of moving my mother to Chelsea, I had to believe that what a move offered would be an improvement over what her present home and Elly were already accomplishing with Elly's incredible effort and visits nearly every day.  As good as Chelsea might be, was there any guarantee that it could make less essential the daily visits Elly was making, and if not, could I take over that role in Michigan that Elly was performing so unfailingly in Boston?

To almost any outsider, the idea of daily visits as utterly crucial sounds exaggerated.  Let me give you a description of a visit as I experience it when I travel to see mom, and as Elly does it almost daily.  Perhaps I can give some idea of the importance attributed here to these daily visits.

Imagine for a moment that you are coming along with me on a visit to my mother.  Elly has picked me up at the airport and now you join me also.  We decide to put lunch off a little in order to join mom for lunch at the nursing home.  When we arrive on her floor, we cannot at first find my mom.  "I saw Marjorie down on the other wing," some helpful aid may say as she recognizes us and our search.  As we head in the direction indicated, I may turn my head as if in recognition, and then shrink back, horrified to realize I have turned momentarily toward the wrong white-haired figure, moving slowly and without purpose in her wheeled chair, so alike do residents here seem to become.  Now we spot mom and go to her.  “Hi mom, it’s Joey—I know Elly told you I would come today.”  “Ooooh,” she might moan, and seem for a time unable to emerge from her moaning tone and her lost meanderings.  But with a little conversation, a little straightening of her garments, and strokes of her hair—little by little, in less than five minutes, she clearly is taking comfort, looking like herself, and on a good visit, taking real pleasure in recognizing us, knowing that we have come, and talking with us.

We fill her up with stories, with food and treats, with walks around the grounds, with an actual stroll that she manages rather well, after rising with surprising strength from her chair.  As we depart, we witness my mom’s almost instant withdrawal, her return to a lost state.  Our visit is a replica of Elly’s daily ones and the near miracle of transformations and sustained connections Elly’s visits perform.  These daily visits carry for Elly the terrible cost of time taken from her work, her art, her family, and herself, but also are a lifeline for my mother.  Thinking of mom receiving no such contact in a day is to think of a kind of cruelty.  We three sisters represent a different array of resolution of our feelings about that.  Elly continues to visit daily.  Barb reaches out to give Elly permission not to visit, saying, “it’s too much, save yourself.”  But I have wished that there could be more frequent visits—that my mother need never become that tiny planet lost in orbit, as Elly sometimes describes her.  At the same time, after many a visit, I myself can only barely wait to leave, just as you, the bystander, would probably be wishing to do: to whisk Elly away, to go home with her, and to leave the wrenching sadness of my mother's environment.

Then, here I was, suggesting that I could trade places with Elly, in effect, and bring my mother to live near me, to perform the miracle of visits, or hope that Chelsea would be so miraculous in itself that such visits would be not nearly so needed at Chelsea as in Boston.

The process of coming to a decision about Chelsea returned me to thoughts of the process by which we came to accept the idea of a nursing home in the first place.  When we realized my father would soon die of cancer, we first struggled to find a way to allow my mother to stay in her own home.  My mother's home was too far from all of us, too rural, and too isolated, as it turns out, to make her remaining at home manageable.  There was also a growing realization that her rural isolation was contributing to depression, adding to her difficulties with dementia.  By the time my father died, my mother was in such acute distress and confusion that there was no longer any possibility of her remaining in her own home.

Since we brought her to the Boston area for evaluation, Elly and David’s home became the family center, and in some ways, the logical choice if she were to be kept in one of our homes.  Their house is large.  Elly’s children are grown.  Davis is a remarkable, caring, and generous man.  Yet Elly and David had only just experienced the terminal illness and year of care of his mother in their home.  While home care contributed greatly to David’s mother’s sense of well-being, her care made different and in some ways more manageable demands than that of our mother, whose confusion meant she could not dress, toilet, or feed herself.

As I continued to struggle with the question of a move to Chelsea, my teenage daughter’s needs were becoming more pressing.  It became harder and harder to claim that I could give mom nearly the measure of my time and attention that might be needed.  My daughter resented that I was so often unavailable to her while I made my Boston visits or talked at length on the phone with my sisters.  My daughter’s resentments combined with her teenage propensity for all-out rebellion, and some personal difficulties all her own, have made for a time when she seemed to live in a state of nearly perpetual rage.  My resilience as a single parent was being sorely tested.

Finally it became clear that a move to Chelsea was not to be part of the picture.  After I gave up this dream, a large part of the tension between me and my sisters subsided and I could reclaim more of their support.  I was able to take much more of Barb's wise counsel to heart and talk about mom more easily with Elly.

Though much was resolved, a painful change remained.  Since I could do little to help Elly, whose tasks were so enormous, my life long habit of sharing the ups and downs of daily life with her seemed inappropriate, the events I might report, trivial under the circumstances.  Our twin relationship had meant that we had always been tuned in to each other.  In the period described here, there has been understandable interference on our telepathic line.  I shared far less than I was used to doing, and there was a period in which one of my greatest losses was Elly.

In the two years covered in this account, I have learned a great deal about myself and my family and about dreams and reality.  For facing my own realities during this time of my mother's illness,, psychological counseling and family guidance have been invaluably helpful.  Valuable too have been the hours spent talking to my sisters, sharing ideas, and reading voraciously in the literature of personal growth, such as Necessary Losses by Judith Viorst, Unfinished Business by Maggie Scarff, The Dance of Anger by Harriet Lerner, and The Family Crucible by Whitaker and Napier.  In addition to well known books about dealing with Alzheimer's disease such as The 36 Hour Day and The Loss of Self, there is a new book I think is important.  Uneasy Endings, by anthropologist René Rose Shield, looks at a nursing home as a culture unto itself and offers invaluable perspectives on a nursing home's workings and failings.

I have found some indirect ways to be helpful to my mother and other victims of dementia.  For example, I noticed a nearly invisible typewritten chart in a nursing home I visited.  I thought the chart excellent but in need of being redesigned and distributed for wider use.  Because I teach at a school of art, I was able to arrange to have the chart redesigned.  The chart helps with two problems.  First, aids in nursing homes are often those in most frequent contact with the patient, but sometimes lack the most basic information about the patient.  The chart can be filled in by family members.  Noted on the chart is what the patient needs help in doing (such as dressing) and what the patient can do independently (perhaps, walking).  The second problem such a chart helps address is the loss of a patient's identity through mental and physical decline.  The chart has space for a picture of the patient before the onset of dementia and space for family members to give a little background about their loved one such as former occupation and interests.

The struggle between dreams and reality with which I began this account have continued to inform my creative work.  I use photographs to suggest reality and draw and use collage with my photographs to suggest the fantasy and the nightmares.  When I was struggling through my father's illness, I wrote: "Though photography is my usual expressive form, my camera has always sought the beauty and light in a moment.  I have taken no picture in weeks.  Before me are scenes unbearable on first sight—nothing feels as if it could be contained by the camera’s frame.  The house is filled with an atmosphere of darkness; I am the last person to want to turn on the floodlights, or click the shutter now." We would have little photo record if it were not for Barbara’s wonderful pictures of the past two years.

My own responses cannot be seen in recent photographs, but have taken the form of photo collage.  One of my recent photo collage works is titled "Roots and Wings," a title taken from a passage attributed to Henry Ward Beecher.  The passage says that the only things of lasting value we can pass on to our children are roots and wings, and the photo collage work uses imagery to suggest the same thing.  While we three sisters care for our mother, we are tending to these precious roots while attempting not to damage our own wings nor those of our children.

Part III

MY MOTHER’S HANDS

Barbara Leonard Handelman

24 Bullock Road

Norwich

Vermont, 05001

My mother emerged from her bedroom dressed in one of her bizarrely concocted outfits comprised of sheets wrapped around her partially naked body.  Her face was contorted with desperation as she sought to exit the house.  She screamed as she lurched forward, "HELP!  HELP!  Save the children, the house is on fire!" The time was six a.m. on the day of my father's memorial service.  When Mother entered, Elly and I, and my five year old daughter, Kali, were asleep on the living room floor in my parents' home.  Before jumping up to stop my mother, I took time to quickly assure Kali that everything would be all right.  Kali was then whisked away by Joanne down to the basement bedroom, where Kali could be entertained and comforted by Joanne's daughter, Julia.  On that day, roles within our family shifted: I began to feel responsible for the family.

Several hours passed before I was free to be with Kali again.  Before Kali was removed from the scene, she saw me physically restraining her grandmother, "Oma," as Kali calls her.  Mom was kicking, biting, and hitting me in her frantic effort to leave the house and the nonexistent fire she believed would consume us all.

During that incident I simply took over.  I did what years of training and experience had taught me to do.  I saw terror in all the faces around me.  I did not feel my own.  Detachment served me well.  Mother's hands have always embodied the gentleness of her being.  I did not recognize that the fingernails embedded in my hands were my mother's.  I have yet to fully reclaim the parts of myself that I lost during my mother's psychotic episode.

I was once a daughter, and the youngest sister.  I do not think I have felt like a daughter since that day.  Nor have I felt much like the youngest member of the family.  I have felt needed, respected, and appreciated.  I have also felt subsumed by my new role within the family.  It seemed natural to me that Elly would inherit the role of family parent; perhaps because she herself became a mother so long before Joanne and I did.  Elly came to help me after the birth of my twins.  When Elly became stand-in grand mother, I saw her beginning to take on roles Mom could no longer handle for herself.  I looked up to Elly and I anticipated that when the time came that our parents' lives were fading, Elly would lead the way.  Until my father's death and my mother's psychotic episode, I never imagined even sharing a parental role in my family of origin.

My mother set a strong example as a parent—an example I unconsciously followed in my new role with my sisters.  Mom felt so burdened by her own mother's role-reversing need for a confidant that she vowed never to burden her own children similarly.  As long as she had her health, she honored that promise.

I learned from my mother that being a parent means not sharing your emotional pain with those who depend on your strength.  Elly once wrote: "Maybe that makes it all the more alarming now to see her in this condition: unable to be defended, with all of her own feelings inarticulate, but terribly visible and audible to all."

Even before my father's death, Mom turned to me as the person expected to have answers, the one who should know how to get help.  While my father was dying, a lifetime of stored rage rose to the surface in his behavior.  From his deathbed, he ruled the household with iron-fisted control.  Mother's demented confusion took on an overlay of fear.  After fifty-five years of marriage, even she became a target of his irrational demands.  Dad could not bear to have Mom out of his sight, nor could he put much energy into relating to anyone.  He would insist that she sit with him in a darkened room, prisoner to the blaring television that meant nothing to her.  In one poignant moment of lucidity, she asked me to help her find a professional to whom she could talk, someone to help her cope with Dad.

The relationships of mother and daughter have been flip-flopping almost as long as Mom has been ill.  I remember clearly the last time I felt like my mother's daughter.  I had just responded to one of my father's edicts.  My actions had not satisfied him and his criticism stung.  My mother's intuitive eye caught the frustration, disappointment, and sadness I tried unsuccessfully to hide.  Mom gathered me in her arms.  I felt absolutely safe.  She said soothingly, "He's not feeling well, dear; don't take it personally." With that one statement, she was totally in character; she consoled me and defended my father.  In the next moment, she was no longer lucid; she was confused and no longer certain Dad was even alive.

My mother and I resemble each other, and we loved many of the same activities.  As isolated, lonely children we each turned to dogs and horses for companionship and emotional safety.  As adults, we each chose to transform our painful childhood experiences into resources for helping others.

Mom and I shared a dream of running a treatment center for emotionally disturbed children, which would share its location with a deer preserve.  That dream symbolized our closeness, the degree to which we each perceived our lives as linked in a multidimensional and absolutely enduring way.  We spoke of that dream the night of my father's memorial service.  I sat alone with Mom on her bed.  Her language was rich with the complexity of her thoughts, but almost everything was expressed through symbolic imagery.

I remember drifting intuitively with her thoughts.  We spoke of dreams and losses, relationships and places.  I do not remember a lot about the specific content of that conversation.  When we stopped talking, Mom was calm and lucid, and she said to me: "I feel as though I should pay you." That comment symbolized a rejoining, and a healing of an incredibly painful rift between us.

Mother was an orthodox Freudian psychoanalyst.  I am a therapist with a more varied orientation.  Before my mother's illness began, we stopped discussing cases or much of anything to do with our work.  She challenged my legitimacy as a therapist.  About a year before Dad died, Mother asked me, "Why would anyone choose to see you when they could see a real therapist?" Mom's offer to pay me signified a new recognition of my skills that came from the depths of her own vulnerability.  Her acceptance of me under those circumstances means far more to me than her professional acknowledgment ever could have.

For about a year and a half our family lived in crisis mode.  The crises were real and generated a kind of energy of their own.  The sense of crisis enabled me to avoid most of my own emotional needs.  It was easy for me to focus on the demands of my mother's situation and my supportive role with both of my sisters.  My role became that of the voice of reason.

Elly was visiting Mom daily, attending to Mom's emotional needs and grappling with the myriad people responsible for our mother's direct care.  Elly's burden was staggering.  I wanted desperately to ease her struggle and her pain.  In fighting to preserve our mother's dignity, Elly encountered challenges no one could have been prepared for.  When she discovered Mom restrained unnecessarily, Elly's outrage was tempered with grace.  She met callousness with articulate diplomacy.

For months on end, we spoke nightly on the telephone.  As Elly described the turmoil of her day, I heard her note of uncertainty: "Have I done enough?  Have I done it right?" I tried to find ways to reassure her - to feed back her own eloquence, her insightfulness, and her sensitivity to Mom.  I reminded Elly that in the face of this hideous disease there is no such thing as enough.

As the one most familiar with psychiatric and medical technical language, I chose to present the clinical picture of Mom to consulting psychiatrists.  I was unable to step back and ask to be seen as a daughter in pain and in need of support.  I became an interpreter and lost my own voice.

My sisters and I each had our own nemesis.  An occasion that evoked one sister's acceptance was sometimes the cause of another's despair.  We were each mourning—at times playing out on each other our outrage at our mother's disease.  We needed to vent our frustration.  My nemesis was my mother's hair.  With her hair parted on the side and slicked down, Mom did not look like herself.  I styled my mother's hair each time I visited, but the aides responsible for her personal care rarely followed my example.  At times, I felt foolish for being so passionate about Mom's hair.  Her hair became the line of demarcation between life with dignity and the dehumanized life of institutionalization.

Inevitably, the pace at which the three of us accepted Mom's decline varied.  Ambivalence regarding dependency, old and new needs for separation—all were played out in our relationships with each other.  We were all needing to hold on and to be held, to mother and to be mothered in the face of profound loss. our roles shifted many times.  At times, I felt like I was both Mother and therapist to my sisters.  Almost every night, I spoke with both of my sisters.  Our long distance telephone bills reflected our need for support, our struggles with each other, and our reactions to Mom's illness.

My marriage faltered, my health suffered, and my two young children received less of me than I would have liked.  During the months of my father's illness, between June and September of 1988, I was never away from my parents' home in New York for more than ten consecutive days.  Traveling the distance of 500 miles round-trip was exhausting.  For the first year after we moved Mom to Boston, I traveled every two to three weeks to be with her.  Each trip required that I disconnect from my children, my husband, and the rhythms of my own life.

During the second year, I cut the frequency of my visits to once a month.  Chronic fatigue was a feature of my life as were irritability, insomnia, migraine headaches, and increased physical pain related to my menstrual cycles.  Years of my own psychotherapy had helped me to differentiate between emotional and physical pain; yet, I managed to lose most of that perspective.

In February, 1990, I chose to have a total hysterectomy—a major step in resuming responsibility for caring for myself.  The surgery gave me the longest break between visits to my mother since the onset of my father's illness.  I did not see Mom for two months.  My visit with her in April was gut-wrenching.  I had lost some of the insulation that grew from seeing her frequently.  Everything bothered me more—the smells of the nursing home, the vacancy of my mother's affect, her decreased recognition of me or my daughter.  Each assault hit me as if it were new.  After that visit I wrote the following poem:

Where is My Mother?

those soft soft warm silky soft, smooth soft warm

mother hands

our hands know each other's

hands ... pairs

eyes, hands, twins, mother daughter

pairs

face to face, touching cheeks warmth passing lips touching

mother passing

away, where is she?

in her hands

no voice

eyes cloudy

no voice there

where is she?

in her hands?

in her face?

cheeks touching, hers and mine warmth passing

mother passing

through me

good bye?

While preparing for that April visit to Boston, I became acutely aware of the rhythm of my life.  A week before my visit to Mom, I would become edgy and more irritable.  By midweek, I began having difficulty sleeping.  In Boston, I exhausted myself staying up late talking to Elly and trying to process my own feelings about my mother.  When I returned home, it took a full week to recover.  That gave me about ten days at home before the cycle was to begin anew.  After my surgery, my husband pointed out that although I no longer had PMS, I certainly had PBS (pre-Boston syndrome), and they were remarkably similar.

When I returned from my April trip to Boston, I was more agitated and depressed than I had been since my mother's illness began.  Several close friends tried to persuade me that I should visit Mom less often.  I did not believe that I could cut back on the frequency of my trips.  I accused myself of being a wimp in comparison to Elly, who continued to visit five or six times per week.  How could I let her down?  How I could I allow myself to decrease my visits in the face of Elly's dedication?

At my monthly Alzheimer's support group meeting, I received a remarkable gift.  A woman named Mary came to her first and only session of our support group.  Mary is an elegant, soft-spoken, gracious woman in her mid-seventies.  Physically, she reminds me of my mother.  I cried throughout most of that meeting.  Several members of the group suggested I stop visiting Mom so often.  I resisted each of those voices until Mary spoke.  Simply, Mary said to me, "Your mother would not want you to be hurting yourself in this way; she would rather be dead than have her life cause you such pain."

It was as if in that moment my mother was speaking to me through Mary.  I knew Mary was right.  One of my roles with each of my sisters had been to remind them that Mom would want us to do everything in our power to help her, as long as we could do so, without sacrificing our own essential well-being.  It was time for me to listen and heed that message myself.

In May I wrote a letter to my dear friend and mentor, Clark Moustakas.  In it, I described my feelings about my mother's situation and my relationship to her.  I wrote: "My mother continues her incredibly slow death in tiny steps.  I feel like I am standing on the shore watching someone I love and cherish drown. Once a month I dive into the water, swim as hard and as far as I can without drowning myself, but do not reach her.  And then I swim for shore, leaving her behind."

The following is a excerpt from Clark's response: "Your decision to visit your mother at greater time intervals means that you will be able to enter the waters of her life more gently, with greater resources, and with fuller breath to sustain you for longer periods.  Perhaps then you can focus more on 'What is?' not 'What was' or how 'What is' came to be or 'What will be.' In being in the here and now as the only reality, perhaps you can accept that the person before you is not your mother in any full-bodied sense of the meaning, but someone ravaged by disease and present only in a partial and fragmented way."

What Clark suggests is what Kali, now seven, has done all along.  Kali's acceptance of her "Oma," however she finds her, seems remarkable to me.  There is a purity in their finding each other each time they meet.  No expectations cloud their simple pleasure in each other's company.  Asked for a description of her relationship with Oma, Kali responded, "She has the softest hands in the whole world.,,

In the last year, I have visited Mom less frequently.  The intervals between visits have occasionally stretched as long as eight weeks.  The visits are difficult for me now in a different way.  The person I visit feels only in the most tenuous ways related to the remarkable woman who was my mother.  I think in some very profound sense I said good-bye to Mom last April, on her eighty-fifth birthday.  That parting began a process of disconnection that is allowing me to focus now on myself, my children, my marriage, and my work.  I am freer now to experience my greatest loss: Mom and I will never share being wives and mothers.  I married when Mom was seventy-eight years old.  My twins were born a year later, around the time her illness first became apparent.  I cannot turn to my mother for wisdom; nor can I share with her the depth of my joy in being a mother.

Elly has asked me what I would have done if she were not there to carry on her vigilant care of Mom.  Of course, I cannot know for sure what I would do if Elly were not there bringing light into Mom's daily life.  The choice I made was agonizing.  Could I bear to know that Mom was alone, adrift for days, even weeks, with no loving family visitors?  Perhaps I would have brought Mom to live near me.  I hope I would have had the courage to honor the choice I have made to visit less often—to care for Mom the best I can, while taking increasingly better care of myself.

Crises are by definition time limited.  What is happening now after two years is no longer a crisis.  This is life in new form, replete with chronic stress, but no longer a crisis.  Neither is the experience complete.  I have no distance from the struggles.  The greatest work ahead may be for my sisters and me to accept our differences.  We need each to find our own peace with our roles in our mother's situation.  We are still in the midst of the pain; we have little objectivity.  To share our differing perceptions of our mother's illness with others, while we are still so immersed in her care, is both exhilarating and excruciating.

I am working on becoming again one sister among three.  I am learning to ask for support, and beginning to share my pain, as well as my wisdom, with my sisters.

In March, 1990, Mom had a visit with her brother—perhaps their last.  Following that visit, she appeared to let go of her struggle to live.  She suddenly lost the ability to walk and to feed herself, and she became virtually nonverbal.  For the first time, I allowed myself to hope she would die soon.  Then, the newest drug to have been added to Mom's regime was withdrawn, and she began to rally.  I will close with two poems I wrote after that crisis:

I Hate Roller Coasters

waves of life flicker

smiles hint

but is that enough reason

to keep

riding the roller coaster?

Good News!

Good News?

she's rallied again...

talking, joking

wisdom readable between

lines of silence

why am I ripping apart inside?

EPILOGUE

On February 26, 1991, I received a phone call that announced the news that catapulted our family into a new state of crisis.  Mom had developed pneumonia.  My sisters and I were together in Boston within hours of that phone call.  Mom was very close to death.  The following poem describes some of my feelings during that crisis:

Reaching out to hold my mother

My empty arms cannot enfold

Her quiet disappearance

In her sensitive book, The Summer of the Great Grandmother, Madeleine L'Engle says, "Only death will give me back my mother".  I, too, look to death for hope.  I want my mother back.  I want to be able to rejoice in my memories of her nurturing warmth, her sensitive intuition, her love of gardens, her grace as a figure skater, her wisdom, and her laughter.

The pneumonia was offering a possible opportunity for my mother to die, without further deterioration from Alzheimer's Disease.  My sisters and I had to make a choice.  I implored my sisters to agree to withdraw the antibiotic treatment that had been started.  They were less certain than I. The tension and pain inherent in that decision process was almost unbearable.  We raged among ourselves and against our mother's illness.

Elly, in a state of agony, tried to weigh what she knew of our mother's wish to die with dignity, against Mom's apparent struggle to stay alive.  I stated my belief that Mom had not been fighting to stay alive.  Her heroic effort had been to make the best of a ghastly situation—an effort absolutely consistent with her uncomplaining personal grace.

Becoming senile was something my mother consistently referred to with dread.  Mom told me, long ago, that she would choose to live if she were physically disabled.  She was candid, explicit, and emphatic, however, that she did not want to live beyond the clear functioning of her mind.  Throughout our lives, when my sisters or I would discuss death with Mom, she assured us that she was not afraid to die.

Nothing that has happened, nothing that has been said in the past two and a half years in any way suggests that Mom ever changed her mind about living with senility.  On the contrary, out of the depths of her confusion have come messages validating her consistency.  To David she said, "How long do I have to do this?" To me, she said, "If I decide not to do this anymore, could you forgive me?" To Elly, very gently, she said, "I can't bear it anymore." These and other comments were affirmations of conversations I had with her more than five years prior to the onset of her illness.  During those earlier discussions, I made a covenant with my mother.  I promised her that if she told me how she felt about dying—if she would be explicit about the circumstances under which she would want to live, and the conditions when she would choose to die—I would do everything within my power to see that her wishes were honored.

To love my mother, during the past two and a half years, has meant joining with her in her struggle—if not to extend her life, then to live it to its fullest potential, even in its most compromised form.  Each of my sisters and I have come to know Mom in new ways.  In fact, we have developed new relationships with the valiant, dying person who now inhabits my mother's body, who speaks in her voice.

Deciding not to treat her pneumonia demanded of us that we honor the person that my mother once was.  We now grieve for two people: the person who lived in vigorous good health for nearly eighty years, and the person who has been slowly dying for almost seven years.

I rail against this disease that robs me of my mother, and steals my mother from herself.  As intensely as I yearn for her death, I feel the aching loss of my mother's gentle touch, her mischievous eyes, and her lingering ability to say, "good night, darling".

I try to apply the "Serenity Prayer" in my daily life: to accept things I cannot change, change what I can, and let go of the rest.  In the face of my mother's dying, serenity eludes me.  I cannot find enough wisdom to guide me.  The following poem describes some of my frustration:

I wish it were possible

to issue Death a summons,

a gentle invitation, a silent challenge.

Death's elusiveness requires of me

a patience not subject to my will:

it can be defined only by humility.

Physically, Mom has fully recovered from the pneumonia.  There may be some wonderful moments ahead to be shared.  However, someone very wise recently told me and my sisters, "You must remember that when you look at your mother, you need to look at the quality of her life, not the quality of the moment." My mother's life now consists only of fragments—some beautiful and gentle, others harsh and cruel.  Mom can make no connections.

When Mom first became ill with pneumonia, we thought she had also suffered an irreversible neurological decline, causing her arrival at the final stage of Alzheimer's Disease.  Her hands were contracted into fists, and her body was tightly curled into a fetal position.  She was difficult to rouse and unable to speak more than an occasional one-word response to a direct question.  Her moaning was almost constant—at times it sounded as if she were humming a tune without melody.  More often, her moaning seemed an expression of relentless emotional agony.

After three weeks with pneumonia, Mom regained her ability to feed herself and move herself about in her wheelchair; she talks as well as she did prior to that acute physical illness.  We have had a preview of the nightmarish descent that lies ahead—it is all that Alzheimer's Disease promises for my mother

TAKING LEAVE

A Coda

by

Eleanor Rubin

Joanne Leonard

and

Barbara Handelman

CODA: On January 7, 1992, our mother, Marjorie Leonard, died.

Toward evening two Canada Geese flew over head.

"Good", I said, sharing my thoughts with my sisters.  "At last she is

free and her spirit has found its companion." Eleanor Rubin

It is now June 1992.

None of us has had the distance yet to sit down and purposefully write about our mother's death.  Each of us however finds that in some context, either a letter to a friend, or in notes toward a talk or article we were writing, the memories of the last year and of her final moments of life force their way to the surface of our thoughts and into our writing.  What follows are excerpts from those letters and notes.

Letter to a friend in Hong Kong written by Elly, March 1992:

1 was surprised that you wrote that I said little of my mom's death since I often fear I tell people too much, burden them with what I can barely contain ... it happened in this manner ... that she had a cold which turned into a second episode of pneumonia.  It was the nature of her underlying illness, her Alzheimer's disease, that when anything stressed her system, she lost whatever was left of her ability to cope, to communicate, to "be with" the world ... and so, as her pneumonia which was mild but which we did not treat, worsened, she appeared mostly to be asleep, in bed, not tuned in at all ... a blessing really since last year when we went through a similar period, she had so much "fight" left, and moaned and grimaced and kicked her legs and fought with her demons and I just about perished from the anguish of her turmoil.

The blessing was that in this final phase she was peaceful, far, far away... no way to know if she was frightened or if she was aware that we were there with her, but the miracle was that all three of us were the-re with her... Joanne, Barbara and I were there with her at the very last moments.

I think now much more of her illness than of her death, as if I am working back through time trying to find her... my dreams of her take the form of encountering her looking just like herself, (herself of perhaps 15 years ago, an older woman but elegant and fit) and then, in the dream, her confusion is revealed.  In the first dream, she was getting better, as if I could reverse the progress of the disease.  I was sure I could see her improving even if no one else could.

Post script to the letter:

My dreams filter into my images.  Taking Leave is an image related to the dream mentioned in the letter to Irene.  It is a great help to me to transform the vague nightmare quality of dreams into a woodcut, a strong black and white image.  It gives me back some sense of control to make these feeling/thoughts visible.

A half year has passed.  I think out loud about what has helped us most in the last year of her life and in these months since she died:

Alzheimer’s Association of Eastern Massachusetts continued to be an essential support.  The support group leader came to our house, talked with us, helped us to listen to our own thoughts and feelings and to hear each other even as our voices grew loud with pain and disagreement.

The Erik Erikson Center Home Care Corp. helped us to find intuitive people who could spend time with Marjorie, read poetry, take her out doors, talk to her and relieve our sense of her empty life.  It is not possible to say for sure that this kind of attention helped her.  What is certain is that it helped us.  These young home care workers gave her more of the life enhancing attention that in fantasies we would have given her ourselves if it had been possible to be with her at all times.

The nursing home staff gave us a kind of stability.  They provided a base line of good care in a protecting and predictable environment.  They did the hard, thankless tasks that kept her clean enough and warm enough and safe from her heedless self.

Hospice of the Good Shephard, a hospice which provides "home" care even in a nursing home, came to our aid at the critical moments when she appeared to be near death.  Hospice staff, social workers, nurses and a visiting aide became our companions in the fullest sense of the word during her near fatal and her final illness.

Hospice helped us in many ways not the least of which was the way in which their staff took on the task of helping the nurses and nurses aides at the nursing home to understand the role of hospice, the philosophy of bringing comfort rather than aggressive treatment.  Our decision not to "treat" was complicated for us to arrive at and complicated for many on the nursing home staff to accept.

Connections to each other, to our families, and to friends and counselors helped.

 Writing, and making images (and finding poems and images that resonated with our experience) gave us a vocabulary richer than words alone, a vocabulary with which we could express and share our experience.

In notes for a presentation Joanne will give in October 1992 to a conference of women in photography, Joanne wrote:

My mother died in January 1992.  Even before her death, while she lived in the grips of Alzheimer's disease, she had died as someone who could know and tell her own story.  We her daughters, became her memory, and in a sense, her voice.  We have blurred the boundaries between memory and imagination, between presence and absence, and between autobiography and biography as we have worked to use our visual art forms to comment and respond.  Between 1990 and 1992 I created over 60 works of photography and photo collage.  In this visual work I used fragmenting, layering, overlapping, and repeating of images and text as signs for the imprecise process of remembering and for the experience of memory loss.  My absorption in creating this body of work eased the sad time surrounding my mother's death. The exhibit, presented April 4 through June 7, 1992 at the University of Michigan Museum of Art (and then traveling), bears the title: Not Losing Her Memory., Stories in Photographs, Words and Collage.

Poems recited in memory of my mother, 6/6/92, Norwich, Vermont, where we gather with family to plant a tree

NEVER AGAIN WOULD BIRDS' SONG BE THE SAME

Robert Frost

He would declare and could himself believe

That the birds there in all the garden round

From having heard the daylong voice of Eve,

Had added to their own an oversound,

Her tone of meaning but without the words.

Admittedly an eloquence so soft

Could only have had an influence on birds

When call or laughter carried it aloft.

Be that as may be, she was in their song.

Moreover her voice upon their voices crossed

Had now persisted in the woods so long

That probably it never would be lost.

Never again would birds' song be the same.

And to do that to birds was why she came.

from TRANSCENDENTAL ETUDE

Adrienne Rich

At most we're allowed a few months

of simply listening to the simple line

of a woman's voice singing a child

against her heart.  Everything else is too soon,

too sudden, the wrenching-apart, that woman's heartbeat

heard ever after from a distance,

the loss of that ground-note echoing

whenever we are happy, or in despair.

In early 1992, Barbara wrote:

A nursing home never felt like the right place for our mother to live.  But as a place to die it felt surprisingly warm and supportive.  While keeping Mom comfortable, the staff nurtured us with hugs and cups of tea.  They were graceful in their effort to accept our choice to allow Mom to die without heroic intervention.  Their caring was personal.  They had glimpsed the person she had been before Alzheimer's Disease robbed her of herself.  That was the great advantage of their having known and cared for her during the earlier stages of her illness.

Having photographed every other stage of her descent into dementia, I carried my camera to her deathbed and photographed our last days and hours by her side.  Ours was a gentle vigil, during which we shared the richness of our memories, our humor, and our grief.

Some of the nursing home staff were appalled that I would take pictures at such moments.  "Pictures are for happy occasions," they said to me.  "Why would you want to take pictures of your mother dying?" Encouraged by my sisters and my nephew, I continued to use my camera to capture the beauty and the sadness - the miracle of our all being together as we shared the finality of our mother's death.

Throughout Mom's illness, writing poetry gave a form to my feelings.  In the day's following my mother's death, I wrote the following poems:

Death Grip

The message was in her hands:

a death grip tightening

with the strength of age

primitive as an infant's grasp.

Her mind was trapped

like a wingless bird

until the gift of death

freed her spirit from its cage.

Lullaby

Mothers nurturing daughters,

mothering mothers, mothering daughters;

Daughters nurturing mothers,

mothering daughters, mothering mothers:

Lyrical rhythm to a legacy.

June 6th and 7th we came together, the three of us sisters and our families, and my mother's brother, in Vermont.  These dates were a marker.  It had been six months since she had died.  We created a memorial service for her and for our father who died in 1988 and whose death was almost eclipsed for us by the whirl wind of distress into which we were catapulted.

We planted two trees at the edge of the woods, on a hillside that Barbara's house looks out upon.  These trees, a weeping cherry and a magnolia, planted in Norwich will grow in Barbara's view, on her land in a place neither parent ever saw.  "Why didn't you plant them here in Massachusetts, where she lived these last years?", my son Joe asked.  Then he answered his own question, giving me an explanation for something I had felt was right but had no words to explain.  "I guess it felt right to plant trees in her memory in a beautiful place which they both would have loved, far, far from where she spent the last three turbulent, terrible years."

OBITUARY FOR MARJORIE ROSENFELD LEONARD

Marjorie R. Leonard, pioneering child psychoanalyst, died on January 7, 1992, of Alzheimer's Disease.  She was 86 years old and a resident of Weston Manor Nursing Home, Weston, MA, at the time of her death.

Born in New York, she moved to Los Angeles in the 1920's and studied at UCLA where she earned her B.A. in psychology in 1928, studying with Professor Shepherd Ivory Franz, who supervised her work with brain damaged children.

Among the first American women to enter the field of psychoanalysis, she went to Berlin in 1929 where she studied at the Berlin Psychoanalytic Institute and at the University of Berlin with such leading analysts as Sandor Rado and Kurt Lewin.

While in Berlin she met her future husband, P. Alfred Leonard, a young German-Jewish lawyer who dedicated his legal career to actively opposing the rise of fascism and Anti-Semitism. lie was on one of the earliest arrest lists when the Nazis came to power.  She helped him escape to America in 1933, and they were married in Los Angeles that same year.  Throughout the 1930's and 1940's, they worked together through the Joint Refugee Committee to help others escape from Nazi-dominated Europe.

Shortly after her return to L.A., she became a founding member of the Los Angeles Psychoanalytic Study Group (1934).  She developed a private practice in the 1940's and 1950's, and from 1955-59 she was associated with the Reiss-David Clinic for Child Guidance in Los Angeles.

In 1962 she was appointed Assistant Clinical Professor of.  Psychiatry at the Albert Einstein Medical School, Bronx, New York.  Her writing on the significance of 'fathering" in the psychosexual development of daughters (1966) is often cited in current studies about women's emotional development.  The mother, grandmother and aunt of twins, she wrote throughout her career about fostering individual identity in twins.

Following the death of her husband in 1988, Marjorie moved to Massachusetts to be near her family.  Though she was already suffering from Alzheimer's Disease at that time, she struggled to understand the nature of this illness.  The spirit of her work has been carried on by her 3 daughters who have written about the psychological impact of Alzheimer's Disease on families, and have made presentations to professional and lay audiences both in Massachusetts and nationally.

Contributions in honor of Marjorie R. Leonard may be sent to the Alzheimer's Association of Eastern Massachusetts, 1 Kendall Square, Building 200, Cambridge, MA. 02139.