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This article was written by Marianne Dickerman Caldwell who is an
advocate for families of missing persons. Ms Caldwell, is the Executive Director of the
Home Safety Foundation, and is the author of Gone Without A Trace; a nurse and an
experienced professional in the field of post-traumatic stress disorder. In addition, Ms
Caldwell writes and lectures about the missing and lost Alzheimer subjects; the impact of
families struggling to cope with the unknown and how to communicate with the severely
grief stricken. Here is her story:
Ironically, my adoptive mother, Stella Dickerman, vanished mysteriously on Friday,
September 13, 1991, two years after the onset of Alzheimer's disease. My mother, Stella
Dickerman, was an artist...friend, teacher and single parent long before she was an
Alzheimer's victim. She was born in Oberlin, Ohio, in 1908, into a family all ready
associated for generations with Oberlin College and the town.
During the 1920's when few Americans and very few woman attended college, my mother
earned a bachelors degree at Oberlin College. Like most woman of her time, in the 30's she
became a wife and mother, devoting her time to making a home for her family and taking
care of her small son.
In the 40's, after giving birth to a second son and taking me into her home, my mother
through separation and divorce became a single parent. At this time, she returned to
college earning her Master's degree in Art Education, while being employed as an art
teacher.
During the 50's she became an art instructor at a major university and later the art
supervisor for a large public school system. In the later part of the 70's she retired
from her career. She moved back to Oberlin and was again actively involved as a member of
various community organizations. All the while, she continued expanding her abilities as
an artist . . . especially watercolor.
As a very active senior citizen, she traveled extensively throughout Europe, Asia and
North America, doing what she liked best--meeting others and painting in watercolor the
cultures and landscapes of the areas she visited.
To those of us who knew her, we found it remarkable that at the age of 78 years, she
could and would cross country ski and ride her bicycle up to 10 miles a day.
As the 1990's approached her abilities began to decline. She was physically healthy but
began to show signs of forgetfulness such as: leaving ingredients out of her recipes when
she baked. Her watercolor paintings began to look primitive. On occasion she would confuse
her son with her brother and would fail to remember, I was her daughter.
And it was during this time, she began to forget where she was walking if she set out
to do something. She was diagnosed by a leading gerontologist at a major medical center as
having dementia, probably Alzheimer's disease.
It was the end of August, 1991, when my mother moved from Ohio to New Hampshire to live
with my brother, William. He is a psychologist and director of a children's boarding
school located outside of Rindge, NH, in a heavily forested area. My brothers and I had
talked and planned for this move for a period of more than one year.
The decision we made was that she would live with my brother in a new house which was
being built for them on school grounds and he would be the primary care giver. We designed
the floor plan of the new house to duplicate her home in Oberlin, in an effort to minimize
her confusion. Our intention was that she could remain with him during this time when it
seemed apparent her Alzheimer's disease was manifesting as early middle stage. This
decision was a temporary solution to meet our mother's care taking needs until
construction of a newly developed retirement facility was completed.
However, at the age of eighty-three my mother went for a walk. How far she walked or
what she was thinking is unknown because she was never seen alive again.
HOW could a woman with so many abilities and personal strengths decline so drastically
in her last few years? That seems to be what cruelly happens to those who get Alzheimer's
disease. But how could she disappear so suddenly and completely? That is what no one
knows.
Wandering
Wandering is one of the most alarming behavioral changes that happens to an Alzheimer
patient. For the four million American's affected by Alzheimer disease, wandering is a
potentially serious problem which befalls up to 60-70% of its victims at some time during
the course of their disease. The Alzheimer patient who cannot think clearly, reason,
communicate, or protect themselves is like a toddler and can innocently stray from an area
of safety and get lost in a totally unfamiliar world, with no sense of who they are or
where they are going.
The Alzheimer patient may feel lost much of the time when out of his or her familiar
environment and wandering may be an expression of finding their way home to recover
control. An Alzheimer patient on the move can be regarded as simply searching for
something familiar, but must be recognized as vulnerable. A person who is seeking to find
something familiar to them from their past: a person, place, object will not know that
these memories have vanished with the disease.
A person who wanders becomes a potential victim for the outdoor elements--and for the
perpetrators of crimes against those who are helpless and who may be elderly. It is a myth
to believe having a loved one disappear only happens to someone else. No one is exempt
from the possibility of this happening. Each year in the U.S., there are approximately 1.8
million persons (children and adults), reported as missing. Many remain missing. I never
imagined that Friday, Sept. 13th, 1991, would be the first day of more than a thousand to
come without knowing what happened to my mother. In the years since her disappearance, I
have experienced firsthand the feelings of profound grief, anguish and confusion that
engulf one when faced with the unknown. My spirit fluctuated between agonizing despair and
fear that the unknown would last forever. I felt totally helpless.
To be grief stricken leaves one feeling raw and vulnerable. It is imperative to realize
that these feelings are valid. Grieving is a time when one feels completely detached from
persons and events around them. As the focus shift inwards, one becomes desensitized to
external events or persons outside oneself.
When a loved one remains missing, the bereaved will be in a state of perpetual grief.
It is impossible to bring closure without the knowledge of what happened and without the
presence of a body. How can one conceptualize what it is they are grieving when there are
no answers? Families oftentimes respond with feelings such as desperation.... because they
have known the missing person in the full richness of their personality.
Knowing that the person has Alzheimer's disease is knowing just one part of who they
are-- and to the families and friends, the thought of the missing person being out in the
environment somewhere-- alone, confused, frightened and perhaps cold is unbearable to
think about.
It is a baffling and frightening experience when a search brings no answers, only
questions such as: "Where did she go"? "Was she given a ride
somewhere"? "Was she a victim of foul play"? "Is she in a hospital
unable to say where she belongs"? "Had she felt abandoned, frightened, lonely?
"Did she wonder why no one came to rescue her, while not knowing how intense the
search for her was" ? These are just some of the words and questions that are a daily
haunt to families of missing persons.
Many persons in Western society are uncomfortable when faced with a person who is
grieving and in mourning after the death of a loved one. Is it any wonder then, that when
there is no body, grief becomes complicated, unresolved, and often misunderstood?
Nancy Verrier, a leading expert in the field of adoption, writes in her book, The
Primal Wound: Understanding the Adopted Child, (1993). "If we do recognize that
someone has suffered a loss, one that we cannot ignore such as the death of a parent,
spouse, or child, we can only tolerate the bereaved person's grief for so long and then we
expect him or her to "get on with life". Grieving people need to be given the
permission to feel their loss and the time to process it. These are people who are
suffering as a result of society's ignorance, and its use of denial as a major defense
against pain and paradox."
People cannot bear to witness the anguish of people who are dealing with traumatic
loss. "Outsiders" to intense grief cannot know the depth of trauma experienced
by "insiders". This shared understanding explains the intense feelings of
connection with other people in a like situation.
People are often unaware of the changes in the grieving person's perception of the
world when there is no body. For many in traumatic grief, the world is no longer a safe
place to be. They know that someone can disappear and that terrifying things can happen.
The process of healing is slow and seems to be marked universally by a sense that one
is alone in grief and deadened to feeling anything relating to another person. Oftentimes
silence prevails when someone remains missing. People don't know what to say in these
circumstances and often say nothing. Co-workers and friends should try to acknowledge the
loss in whatever way they can. When this doesn't happen, survivors feel hurt, resentful,
and disconnected to those around them and the sense of aloneness is intensified.
Sometimes people avoid the subject of the missing person because they fear that talking
about it will trigger more grieving. What is most misunderstood is that the thought of the
person missing is always on one's mind. The anxious anticipation of news of the loved one
is constant.
People in a perpetual state of grief experience intrusive images and memories
associated with the time when the person vanished. They experience spontaneous and
unwanted recall of the event, suddenly acting or feeling as if it were reoccurring.
I found myself triggered by the environment over and over. On days when it rained, I
would spontaneously visualize my mother out in the woods, wet and cold. Whenever I drove
past a forested region, I would scan it, looking for a clue. Looking deep into the
forested area in search of clothing or objects, I would imagine the searchers in New
Hampshire doing the same thing. Whenever a police car or ambulance passed, my heart would
skip a beat, and once again, the same feelings of fear, and hopelessness that I had
experienced during the long search and rescue efforts would resurface.
I was inundated by intrusive thoughts: Was she dead in the woods, had she been given a
ride out of the area and let out, and finally, was she a victim of foul play? All of these
thoughts were haunting.
One speculates continuously, "If I just make the right call to the right person,
I'll solve this mystery. If I look in the right place, I'll find the person". And,
"If I stop looking, the person may never be found." These are the lingering and
troubling thoughts of people struggling to cope with the unknown.
For families who have a child or adult member missing under mysterious circumstances,
the suffering is beyond what any human being should have to endure. The greatest gift we
can give them is to try to understand how unnerving it must be to live with the unknown.
The way to do this is through LOVE. In other words:
Listen - Observe - Validate - Empathize
LISTEN: Listen to what the person is saying--he or she is entitled to
their feelings. Remember that feelings are generated from one's life experiences and may
differ from yours. That's okay.
OBSERVE: What does the person want to say, but is afraid to put out,
for example, his or her worst fears?
VALIDATE: Let the person know that what they are feeling is normal. It
is the traumatic experience which is abnormal.
EMPATHIZE: Offer compassion and sensitivity.
Healing takes time and becomes a personal journey for each person courageous enough to
truly face their grief.
Editor's Note:
While this book was in press on the third anniversary of Stella Dickerman's disappearance,
a hunter stumbled across partial human remains in the New Hampshire countryside, which
were identified as belonging to her.
When I spoke with Ms Caldwell, she extended an invitation to readers of Wings to write
her with their questions or comments.
Marianne Caldwell
PO Box 1625
Pacifica, CA 94044-6635
Gone Without A Trace (1995, Elder Books) ISBM 0-943873-24-X. Or you may obtain the book
from the publisher by writing Elder Books, PO Box 490, Forest Knolls CA 94933. $10.95 each
plus shipping $2.50 for the first book and $1.00 for each additional book.
"All victims of Alzheimer's Disease and related disorders who become missing
deserve the same conscientious efforts toward bringing them safely home, as do people
unaffected by loss of memory."
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