A daughter composes her thoughts on her mother's battle with dementia
by
Norah Ashe-McNalley
In
August, my daughter was born. I named her Frances after her
grandmother, my mother, Mary Frances. I could have named her
Mary (indeed two of my siblings suggested it), but I didn't.
As you might have guessed by the name, my mom was Catholic,
but my father was Jewish. In the Jewish tradition, you never
name a child after a living relative, lest the Angel of Death
get them confused. I knew that my mother was dying at the
time, although there was no way to know how much longer she
would live. With an illness like hers, death could come in
months, or it could come in years. I wanted to be sure that
the Angel of Death didn't mix them up.
In January, right after the New Year, my mother died. Good thing I named my daughter Frances.
For
seven long years my mother suffered from dementia, what used
to be called senility. It is no longer called senility, and
indeed the term now seems to me too dismissive, not only of
the elderly but also of the tremendous suffering the illness
entails. Senility conjures up pictures of a doddering relation
to whom one was reintroduced, with a kiss, each holiday. Funny,
harmless, and full of pathos. When it is called senility,
we are at one extreme likely to mistake the problem as merely
being acute forgetfulness—oh dear, Grandma forgot to
take her clothes off before getting into the shower—while
on the other we mean-spiritedly attribute what truly is forgetfulness
to senility. The term dementia, because it sounds more like
a condition and less like a personality flaw, places much
more weight on the problem.
It was my mother who first taught me to understand what is truly
meant by senility many years ago, when I was still just a young
girl. My mother described it to me ominously, talking about
the day she found her own mother putting her bra on over her
clothing and realized that her mother was no longer the woman
she remembered. All her adult life, my mother had a horrible
fear that she too would one day suffer from dementia, a fear
that I always told her was unfounded. You can't inherit senility
from an adoptive parent, I reminded her. As with so many adopted
children, her medical history did not come into focus until
after she met her birth mother, a woman who was mentally quite
sound. Medically speaking, her mother's illness had no bearing
on her own. My mother's fears, however, came true. She developed
dementia at a relatively young age. She was diagnosed in her
mid-sixties; by then she was already moderately impaired. She
began developing it years earlier, but she covered over the
early signs. At 71, she died of the disease. Score one for nurture,
I guess.
By the time I was born, my mother's mother no longer recognized her own daughter, and could take no interest in me, her last grandchild. This has taken on a poignancy for me in the wake of my own mother's illness. My daughter, too, was born only months before her grandmother died. After caring for my mother at home for many years, we moved her into a nursing home shortly before Frances was born. If I have one regret in life, it is that my parents never got to really meet their grandchild. My father died almost three and a half years ago, less than a year after he walked me down the aisle. As for my mom, although I brought my daughter to see her many times, and although my mother beamed at her whenever she saw her, Frances was born too late for my mom to know her.
As in so many cases
of dementia, a definitive diagnosis can only be made after
death. Her initial diagnosis was only a guess—a guess
that turned out to be incorrect. In general terms, her dementia
involved lesions in her frontal lobe and Broca's area, but
the doctors were unsure as to how this came about. Most likely,
my mother's dementia was brought on by mini-strokes, also
called TIAs or transient ischemic attacks. Only thing is,
we cannot know for sure if mini-strokes were the original
source of her injury. As so often happens, degeneration in
one area of the brain led to degeneration in others, making
it difficult, if not wholly impossible, to separate out the
underlying causes. I guess MRIs can only tell you so much.
The autopsy had more to say, and what it said was kind of
surprising, although it shouldn't have been. My mother's final
diagnosis was Alzheimer's Disease. Alzheimer's (or AD) is
the most common form of dementia. It would have been the most
likely guess, if it weren't for the initial misdiagnosis.
The whole time we were caring for her, I never thought of my mom as suffering from Alzheimer's. Dementia, yes, but Alzheimer's, no. However, the diagnosis turned out to be secondary to the disease itself. When one is caring for someone with dementia, dealing with the disease is primarily a day-by-day concern: the daily ritual of bathing and dressing, the necessities of feeding, medications, etc., plus the unavoidable observation of a loved one's inexorable deterioration.
Functionally, what
the injury to my mother's frontal lobes did was tamper with
her ability to speak. It also destroyed her sense of time
and her short-term memory. Consequently she was unable to
track the separate steps involved in even simple activities.
Contrary to its portrayal in films like Memento and
50 First Dates, the loss of short term memory is
overwhelmingly debilitating. My mom could only follow one
thing at a time, and I mean that on the most basic of levels.
For example, if she was eating dinner and she paused to listen
to the conversation, she would forget that she was eating
because tracking conversation required so much of her attention.
So we would need to remind her subtly with each new bite that
it was still dinner time. That, of course, was when she was
still functional enough to feed herself.
This problem—the
tremendous gulf that developed 'twixt the fork and the lip,
as it were—is called apraxia. My mom had difficulty,
to say the least, completing tasks. She'd get sidetracked
in the middle. So, she would pick up a carrot, or a grape,
or what have you, and gingerly begin to raise it to her mouth.
If nothing intervened to distract her, and she happened to
be hungry enough to really want it, the carrot would make
it to its destination. But all too often, it stopped halfway,
and lingered there long enough to elude its captor. The hand
would fall back down to the table, and the carrot would slip
into her tightly clutched fist, like a magical fetish. Her
apraxia also led to wandering hands, seeking something to
do, something that had to do with something, only the message
from command central in the brain had broken down, garbled,
so it came across in patches. To avert this system before
she would wind up with her hands in her soup or clutched around
a piece of lettuce, we would offer her a napkin or a piece
of silverware to hold.
As the years went on, she lost the ability to feed herself entirely. We would continue to include her in meals, of course, dutifully wheeling her chair to the table. One of us, or one of her caregivers, would feed her bite by bite. But she no longer really participated. She ate mechanically, unthinkingly. My mother was, once upon a time, an amazing cook. By the end, I doubt food held much pleasure for her.
The injury to her
Broca's area destroyed her language capacity with equally alarming
accuracy. My mother once loved to read, but she quickly lost
that ability. Her language skills did not go all at once; they
deteriorated slowly over time, piecemeal. At first, her comprehension
level remained pretty good, even though she couldn't really
talk. She continued to laugh at my father's jokes, which no
doubt pleased him. With most people, telling jokes is a social
pleasantry. For my father, telling jokes was an art, and like
so many artists, he offered his works to her as a gift of his
affection. Up until the final year of her life, she remained
extremely communicative, despite her disability—where
words failed, her facial expressions conveyed all that needed
to be said.
As her disease progressed quickly from moderate Alzheimer's to severe, this highly intelligent woman, who once cared for the day-to-day needs of six (both herself and my father, and her four children) was no longer able to take care of herself. And my mother was not alone. As the population ages, dementia, in a variety of forms, has become something like an epidemic.
When most people
think of dementia, they think of Alzheimer's. Try going into
your average bookstore or log onto one of those medical websites
and look up the term "dementia." You will get 500 references
to Alzheimer's and about ten to the many other forms of dementing
illnesses, including vascular dementia, Lewy's body dementia,
Parkinson's and Pick's disease. This creates a strange hierarchy
of dementias with Alzheimer's coming out on top. It is undoubtedly
the most feared, but it is also the best understood, and it
has the most advanced treatments.
Alzheimer's research
has led to a wealth of treatments for boosting memory. Many
of them are still located in that nebulous region known as
alternative medicine. At times I have been mistrustful simply
because the treatments seem so familiar it is hard to believe
they are effective, things like vitamin E supplements and
folic acid. Others—like ginkgo biloba—have exotic
names that sound just a little too market-ready for my cynical
ears. Like most alternative therapies, the drugs seem to work,
but the mechanism behind their efficacy is not scientifically
understood. Proper dosages are not known. Take estrogen therapy,
for example. Studies into the effects that estrogen may have
on memory have been inconclusive. And even those treatments
that are backed up with tons of traditional medical research,
like Aricept, boast of only temporary gains in memory that
taper off after a year or two. My mom took them all. My parents
both placed more faith in drug therapies than in rehabilitational
ones. The Aricept worked for a short while, but she continued
to take it long after we stopped perceiving any effect. Recently
a new "miracle" drug was introduced, memantine, which claims
to boost the capacities of those suffering from severe dementia.
Unfortunately it came too late for my mother.
While I think that
some of the reason I see my mother's dementia as a special case
comes from the initial misdiagnosis (they thought she had Pick's
Disease, although many of her symptoms were inconsistent with
it), there are several significant differences between the way
that AD usually affects its sufferers and the effects of my
mother's dementia. In my mother's case, her language skills
were affected more profoundly and more quickly. After four years,
she was almost speechless, whereas a typical AD patient would
still be quite verbal, if not necessarily coherent.
My mother also did not suffer from
the kinds of personality transformations that tend to accompany
AD. Or perhaps it is truer to say that her illness led to
other kinds of transformations, ones that were closer to my
mother's personality prior to her illness. My mother became
very passive, a tendency that correlated with the generally
placid demeanor she always had. Despite the fact that she
was cut off from articulating most of her thoughts, she retained
the same basic personality that I have known all my life,
a woman whose gentle manner was somewhat at odds with her
harsh, even pessimistic, worldview. In her final years, that
view was registered mostly in rolling eyes, playful tsk tsks,
and moments of laughter. Moreover my mother continued to take
in meaningful changes in her environment such as my marriage
and the births of her first two grandchildren, my nephew and
my niece, and the death of my father.
When my mother first
became ill, my father became her primary caregiver. In many
ways, they had to learn to switch roles.
My mother had always been the nurturer. She took to the role of mother so completely
that she always seemed to me like some kind of Earth Mother
figure, her brown hair braided and pinned up in a bun, always
feeding someone or tending her garden or lending a sympathetic
ear. Although she did not really follow her horoscope, she once
described herself as a Taurus and said that a Taurus was good
for two things, "having kids and stirring soup." My
Father, an Aries, not a Taurus, did not discover his inner-nurturer
nearly so easily. Still, for my mother, he eventually became
what she needed him to be.
He had to take
over everything. Not only the day-to-day business of running
a household-the shopping, the cooking, the cleaning, the watering,
etc.—but, more significantly, the daily routine of caring
for an invalid. Slowly at first, but inevitably, my mother
lost skills. For a short period she forgot how to sit properly
and she had to relearn it. At first she needed to be coached
while she dressed (she'd forget mid-way whether she was pulling
her shirt on or off), but eventually she needed someone to
bathe and dress her completely. My father had to learn to
take care of her as he saw her deteriorating before his eyes.
Because he recognized
how much she needed him, he started taking better care of
himself. He began to lose weight and exercise more regularly.
He finally got the knee surgery he had been putting off for
several years. He even quit smoking. That is why his death
took all of us off guard.
He died quite suddenly;
not overnight, no, but over a matter of a few wrenching weeks.
When he first went into the hospital, it was difficult to
tell if my mother took it all in. But it eventually became
clear that she was concerned, why was he still at the hospital?
When a neighbor brought over flowers, my mother turned to
my sister and tried to ask, "Is he...?" Is he dead?, my sister
assumed. "No," she replied, "but he's too sick to come home."
Of course, when
he died, she knew that too. On the day of his funeral my mother
and I were sitting at the dining room table, and she was once
again examining those tell-tale flowers that had suddenly
sprung up throughout the house. "Can't, can't...," she tried
to say. "Can't what?" I asked her. "Can't tear," she said.
She wanted to let me know that she was sad too, but she was
no longer able to cry.
Her illness had
affected her ability to express her emotions, particularly
intense emotions like anger and sadness. The lesions in her
frontal lobe have given her—in the bluntest terms—a
rough-and-tumble lobotomy. I would like to think that the
disease that had stolen so much from her, at least gave her
the gift of releasing her from the tyranny of her sadness,
her fears, her anxieties.
Unlikely as it
may seem, for the first several years, her illness really
brought out her beauty. At my wedding, several people who
had not seen her for a long time commented on it. As her mind
folded inward upon itself, her visage took on a radiance at
once childlike and beatific. Her expression had the serenity
of one who has come to accept radical limitations and small,
but genuine, pleasures. However looks can be deceiving. She
only looked serenely at ease with her fate. There were times
when something of her former self returned to her face. Her
eyes became sharp-focused, the lines around her mouth hardened.
At those times, I imagined an immense struggle taking place
below the surface, as her former self battled its way through
the heavy interference of broken synapses.
It is impossible
not to place great emphasis on the words and looks, however
vague and slender, that seemed to emerge from these brief
moments of lucidity.
They never failed to either disturb or move me. Once, a month or so before my
wedding, she took my hand in hers and said, "Now listen.
. . ." She looked at me intensely, thinkingly, but she
said nothing until at last she finished with a few nods and
a meaningless phrase or two, "so then, yes." In that
brief, silent span was packed all the things that a mother is
supposed to say to her daughter before her wedding. But for
my mom, such things could no longer be spoken, only thought.
And for me, I could not help but project into such silent, searching
moments a meaningful exchange between us that was otherwise
blunted.
One moment still
strikes me as uncanny. I was tucking my mother into bed one
evening. At times like that, I found myself speaking to her
as one speaks to a child, kissing her good night and saying
things like, "Are you tired? You're going to sleep well?"
Usually she just smiled at me and perhaps sighed or closed
her eyes in a gesture to indicate sleepiness. But on that
night, my mom's eyes widened—I'm not sure if it was
in fear or just for emphasis—and though she mouthed
the word "NO" with all the exaggeration of a figure in a horror
film, the word came out as a barely audible aspiration. She
repeated it. I was unsure how to calm her, unsure what had
brought about her fear. Had she seen something? (One of the
possible symptoms associated with dementia is hallucinations.)
Or had her old self emerged from beneath, roused to reject
not just the possibility of good night's sleep, but something
infinitely more profound?
My mother once
took me aside and showed me her journal. She told me that
she dreamed of one day writing a novel. When I was in college,
and then later in graduate school, I used to recall this.
I thought that she told me so that she could let go of the
dream, passing it along to be nurtured by the next generation.
Now I am the one who is supposed to write it. After my father
died, I went looking for my mother's old journal. She kept
it through most of her forties, getting up at 5:00 am, before
the rest of us had begun to stir, in order to have time to
drink a cup of coffee and write in solitude. I can remember
seeing her there in the mornings, sitting at the kitchen table.
Reading it felt like a violation in some ways, but at the
same time, it was incredible to once again hold onto, however
briefly, a bit of my mother. She wrote about her marriage,
her adoption, her children. She wrote about being a mother.
She wrote about her disappointment. I discovered that my mom
was a poet.
It is almost midnight
and I should be asleep. I still haven't adjusted to getting
up at 6 am, when Frances wakes up hungry. Instead, here I
am, stealing the time to write. I am my mother's daughter.
As I sit here, I realize exactly what I mean when I say that.
At the same time, I could never really quantify exactly what
that means. When I look at my sleeping daughter I find myself
wondering, what are the dreams that I will pass on to her?
And how will she remake them into her own?
Norah Ashe-McNalley
is a Senior Lecturer in USC's Writing Program and is Co-Advisor
for AngeLingo. After many years of schooling in Northern
California and Orange County, she returned to live in her
hometown, Los Angeles. Her daughter Frances was born August
23, 2003.
