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Glimmers
A
Journey into Alzheimer's Disease
Heidi
E. Hamilton
Illustrations
by Marie Foley
Heidi
Hamilton's Glimmers presents us with a deeply moving account
of one woman's journey into Alzheimer's disease. Hamilton
befriends an aging woman she calls "Elsie." Elsie is a kind,
intelligent individual making her way through Alzheimer's
disease. Hamilton, a Georgetown University associate professor
in Linguistics and an expert in the fields of language and
aging, chronicles Elsie's difficult and touching journey,
providing vivid snapshots of her life and sharing with us
these rare and precious glimmers through the fog of this relentless
disease.
Elsie's
story and Hamilton's wise words provide hope, practical advice,
and assistance to family members and caregivers, helping them
to find joy and "wonder in the here-and-now." These two women
reveal the delicate and important connection between caregivers
and their loved ones, showing, through example, how to live
"calmly and gently, respectful of the ever new characteristics
of the human being with Alzheimer's disease."
About
the Author
Heidi E. Hamilton, Ph.D., is Associate Professor in the Department
of Linguistics, Georgetown University. Her research interests
focus on issues of language and Alzheimer's disease, language
and aging, and medical communication. Her publications include
Conversations with an Alzheimer's Patient: An Interactional
Sociolinguistic Study (Cambridge University Press, 1994) and
Language and Communication in Old Age: Multidisciplinary Perspectives
(Garland Publishing, 1999). She lives in Rockville, Maryland,
with her husband, Dan, and two children, Siri and Sean.
About
the Illustrator
Marie Foley is an award-winning Irish artist. She graduated
in 1995 with a first-class honors degree in Fine Art from
the Limerick School of Art in Ireland. Her extensive body
of work portraying the elderly people of Limerick earned her
the prestigious Taylor Award for most promising emerging Irish
artist. She has exhibited widely throughout Europe and America;
her work appears in many public and private collections. Marie
currently lives in Trinidad, California.
An
excerpt from Glimmers:
Introduction:
Starting the Journey
Uh-oh.
A cloud fell down again! My three-year-old son bolted out
the front door early one morning and suddenly realized that
something was different. Whispy whiteness surrounded us. All
we could see was a faint yellow glimmer in the distance. It
really did seem as if a cloud had fallen from the sky and
landed right on top of our house. He was mystifed. An hour
or so later the 'cloud' disappeared. Clarity returned to the
neighborhood. The outlines of houses became crisp and sharp
once again. The mysterious yellow glimmer was now a rather
plain-looking porch light across the street.
For
individuals with Alzheimer's disease, this whispy whiteness
is a nearly constant companion. What can I do to make it all
come clear? they wonder. It's intensely frustrating. And a
vigorous shake of the head won't make it go away.
The
fog that accompanies Alzheimer's disease comes in many shapes.
It may be specifc, blurring one's connection between an everyday
object and the word for it. It may envelop one in the middle
of a conversation, making one forget almost all of what has
just been said. It can become so thick and so pervasive that
profound confusion is the result-Where do I live? Who are
my children? Is my husband still alive?
The
basis of this fog is physical: the brain of a person with
Alzheimer's disease looks very different from the brain of
a healthy person. Millions of microscopic black dots can be
found in areas of the brain that are most important for higher-level
thinking and memory. These are called 'neuritic plaques' and
are made up of cores of protein deposits surrounded by deteriorating
nerve fibers. In addition to these plaques, millions of damaged
nerve cells can be seen in these critical areas of the brain.
These nerve cells contain abnormal, twisted filaments called
'neurofibrillary tangles'. And beyond this damage, millions
of nerve cells are lost completely, along with the connections
between them and surrounding nerve cells that are vital to
the workings of the brain.
Because
of this physical basis, it is not surprising that most efforts
to explore the effects of Alzheimer's disease have been carried
out by researchers who are primarily interested in how the
brain is related to language and memory. Such research is
typically conducted in clinics and laboratories. Individuals
take standardized tests that help to evaluate their mental
status, their memory, and their language skills. During these
tests, they are asked, for example, to repeat words and phrases
they just read or heard the examiner say. They are asked to
come up with words that describe line drawings on flashcards.
And they are asked to complete familiar sayings, such as "Roses
are red, violets are ____."
These
studies have helped us considerably when it comes to understanding
the devastating effects of Alzheimer's disease on language
and memory. We have learned that, as the disease progresses,
the affected person's ability to communicate changes along
a path that unfolds in pretty much the same way for all such
persons-even though the pace of the changes may vary. In the
mild stage of Alzheimer's, individuals are bothered mainly
by memory problems. Any difficulties with language at this
point are so subtle that they usually go unnoticed. By the
moderate stage, however, they experience increasing difficulty
coming up with the words they want. They struggle with disorientation-finding
it difficult to keep track of where they are and what time
it is. They find it hard to understand what others are saying.
Caregivers begin to notice that conversations are harder to
understand and are less enjoyable to take part in.
In
the severe stage, affected individuals are extremely disoriented.
They contribute little to conversations and may even seem
to be unaware of other people around them. When they do talk,
they repeat a lot and use words and phrases that others find
difficult to understand. Even the way they put sentences together
may seem strange. In the very final stages of the disease,
individuals may use a lot of highly personal and idiosyncractic
language before they stop talking altogether.
In
conducting the studies that have taught us so much about these
steps along the path of Alzheimer's disease, a striking number
of test-givers noticed something else: That their examinees
often performed better outside the formal test situation than
they did during it. Could it be that individuals with Alzheimer's
disease communicate more effectively when they're talking
with people they know, in places they're familiar with, on
topics of their own choosing?
The
recognition of this discrepancy led to greater exploration
of the social issues related to language. Some researchers,
including me, began to investigate how individuals with Alzheimer's
actually use language in real life-when they aren't anxious
about a test or unnerved by a stranger in a white coat.
First,
we stopped seeing these changes in language and memory as
clinical facts related to the progress of the disease. We
began to look at them in terms of what they mean to people
struggling with Alzheimer's. How does it affect their sense
of self when fog blocks memories from the past? How do they
deal with the constant struggle to remember words? How do
they carry out a conversation when they can't even remember
what they just said and who they said it to? What does it
mean to them when they can't seem to understand others-and
others can't seem to understand them?
And
then we moved away from looking exclusively at those with
Alzheimer's disease. After all, they're not the only ones
affected by these changes. Those who care for these individuals
are deeply touched as well. Caregivers have become used to
how their loved ones talk. They love their sister's witty
comebacks or the meticulous pronunciation of their uncle.
Their mother listens well and always has something comforting
to say. Their brother doesn't talk a lot, but when he does,
his comments are always to the point. Changes in these ways
of speaking amount to changes in the people themselves. This
is hard to bear.
And
it's not only a question of caregivers reacting to these changes
in their loved ones. In their everyday conversations with
them, family members and friends can actually have an effect
on how these language and memory changes are played out.
Talking
is like dancing. Dancers who are sensitive to what their partners
can and cannot do can make important choices, choices that
can make their partners look elegant and agile or ones that
can make their partners look silly and uncoordinated. How
caregivers talk with their loved ones can help or hinder them.
In
the pages to follow, we'll embark upon a journey through the
fog of Alzheimer's disease. Through snippets of conversation,
you will come to know a woman I'll call 'Elsie.' In these
snapshots of her life, we'll see her as a person with wants,
needs, and intentions. She laughs, gets embarrassed, expresses
happiness, confidence and confusion, and shows love and concern
for others. We'll come to understand the many changes that
accompany Alzheimer's disease as they are illuminated within
her social worlds far, far away from the doctor's office.
For
those of you struggling to communicate with an individual
with Alzheimer's disease, this trip may be deeply emotional.
You may recognize the confusion. You may recognize the frustration.
You may recognize the little joys in the moment. You may find
your own journey in my journey with Elsie. Come walk with
us. Share our sadness when the whiteness becomes oppressive.
Celebrate the discovery of each little glimmer through the
fog. Come.
©
2003 by Heidi E. Hamilton
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