Alzheimer’s
The Stranger in the
Mirror
PART 2
After an extended hospital stay for medication management for
our mother, my sister and I found an exceptional Alzheimer’s
unit in a new nursing home. Our experience taught us to search
for a small unit, where the residents appeared calm, clean, and
happy. They had a ratio of 1 aide to 4 patients. With my
mother, there were eight patients in the unit. My sister and I
became very close to the aides, due to their exceptional caring
for our mother and sometimes due to insults and injuries caused
to them by our mother. The home was also closer in distance to
me, which enabled my sister and I to effectively switch places
in our mother’s care. The change was helpful to both of us. It
gave my sister some distance from the problems and allowed
assuagement of my guilt for not being close enough to help when
needed.
In the later stages of the disease, the person with Alzheimer’s
with a little guidance can still perform simple activities. My
mother would look at her food tray but be unable to process
where to start. By handing her the fork, she was then able to
eat by herself. Everything that we do is a process of many very
simple steps. Alzheimer’s denies the person the ability to
break down those steps. If caregivers observe closely, they can
determine where the process breaks down and assist the person
with Alzheimer’s to retain as many skills as possible for as
long as possible.
Behavior problems can occur for many reasons including
medication, environment, over-stimulation, and disease
progression. The effects of medication can be different for
each person and should be reassessed by a physician often. A
change in environment is very disturbing in an already strange
world. Admission to a hospital or nursing home has to be
extremely frightening. It is a whole new environment with a
whole new set of strangers, which can set off the fight or
flight response. These patients need to be close to the nurses’
station and they need reassurance that there is someone there
that cares about them, stranger or not.
The staff or the family is most often the cause of
over-stimulation. I am reminded of an incident at the geriatric
psychiatric unit where my mother had been admitted for
medication adjustment. My mother wandered behind the nurses’
desk. From my psychiatric rotation as a student nurse, I knew
that going behind the nurses’ desk was not allowed. It is
considered a threat to the nurses. Three aides tried to pull
her back from the desk, instead of one person redirecting her.
She could not understand what they were trying to do and in
frustration, she swung her arms out to make them go away. It
worked. Being 5’10”tall, her reach was rather far. For the
longest moment in time, I stood there. I was puzzled to see the
aides scatter away from my mother. The realization that they
were afraid of my kind, beautiful mother was my undoing. For
the first time in my life, I cried tears of silence. I could
make no sound as the tears streamed down my face. The staff’s
lack of understanding regarding Alzheimer’s disease was the
cause of her behavior problem. Geriatric Psychiatric Units need
to have more education regarding changing their behavior to
prevent their patient’s “bad” behavior.
Family is often the major cause of behavior problems. Imagine
having five or six strangers surrounding you, hugging you,
telling you that you are their mother and grandmother. In your
mind, you are 10 years old; therefore you cannot be anyone’s
mother. “Who are these people and why are they lying? They just
need to go away. Everyone thinks I’m stupid. Please, someone,
make them go away! Please.” *
*An amalgam of my mother’s words.
It is very important that family does not come in mass when
visiting someone with Alzheimer’s. My sister and I quickly
learned that our mother could only deal with one of us at a
time. As our mother forgot who we were, we would just tell her
our names and that we were someone who loved her. Trying to
orient her to us was worse than useless; it was hurtful to her.
You cannot make someone remember you when they have regressed
to a time prior to your existence. My sister and I could not
hurt our mother by making her feel “stupid”. Therefore, we put
aside our feelings and considered what was best for her. I make
it sound easy, but it was incredibly difficult. We lost our
mother, even though she was standing before us.
This past summer, through the University of Louisiana at
Monroe, I attended a course in Scotland on dementia. It was
conducted at the Iris Murdock Center for Dementia on the campus
of Stirling University just outside Stirling, Scotland. The
course focused on person-centered care for people with
dementia. I prepared for the course by reading two excellent
books regarding Alzheimer’s disease. The Person with
Alzheimer’s Disease by Phyllis Braudy Harris focused on the
perspective of the individual with the disease. This book gave
me insight into my mother’s world. Everything that I had read
previously presented the caregiver’s voice. Finally with the
help of this book, I found my mother’s voice. The second book
that I reviewed for the course was Rethinking Alzheimer’s Care
by Sam Fazio, Dorothy Seman, and Jane Stansell. The first book
allowed me into the world of the person with Alzheimer’s and
the second book instructed me on how to care for this person
within their world. Person-centered care would be a wonderful
new slogan for nursing. It is more to the point than
individualized care and reminds us specifically of the person
receiving our care.
Cont'd
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