Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing With the Disease - Hardcover

Joanne Koenig Coste, a nationally recognized expert and an outspoken advocate for patient and family care, is a board member of the American Journal of Alzheimer’s Disease. Currently in private practice as an Alzheimer’s family therapist, Koenig Coste also serves as president of Alzheimer’s Consulting Associates. She lectures around the country and is the recipient of a National Award for Health Heroes from Reader’s Digest. She was named a “Woman to Watch in the 21st Century” by NBC Nightly News

1

The Ticking Meter

My head feels like an old depot,
worn by time and tears.
No more locomotives passing through,
café filled with tales and baggage.
The old depot"s barren now.
There has been a great brain robbery.

One cool spring day in 1971, the kind that makes New Englanders smile at
each other, I was driving with my husband down the main street of a small
coastal town south of Boston. I spotted a parking space in front of our
destination, a café where we dined frequently, sharing chowder, fried clams,
gigantic iced teas, and dreams of the future.
I told my husband, "Look, there"s a parking space. Not only that —
there"s money in the meter."
"I"m glad," he murmured, seeking my eyes through his
sunglasses. "But I think my meter is running out."
His metaphor fell on deaf ears. With a new life growing inside
me — our fourth child — I may have been unwilling to accept his meaning.
At the time my husband"s lapses in memory seemed innocuous.
He might forget a neighbor"s name or neglect to stop at the store or forget
where the ignition was in the car, but I was clever at disregarding the hints of
medical illness. After all, he frequently drove different cars as part of his
advertising business, and he was so busy; keeping up with minor details was
too much to expect. The situation will improve when we move into a new
house, I told myself, or when the children are older, or when someone in the
medical community will listen to what I am saying.
We moved, the children grew, and the improvement never
happened. We were near financial ruin. Customers weren"t calling us back;
new jobs weren"t coming our way. He had ever greater difficulty focusing and
organizing his thoughts, sometimes rewriting ad copy he had finished the day
before. Once so gentle, docile, and fun to be around, he became frustrated
and angry. My mantra continued whenever I was awake: "Things will be so
much better when —" When?
Our journey into the world of dementia began in 1971, when no
guideposts, advocates, manuals, or support groups were available to help us.
The National Alzheimer"s Association would not be organized for another
decade. My husband was only in his forties, and I did not believe that his
forgetfulness was a natural part of aging. The children chided their father
occasionally about his "absent-mindedness" but seemed to see nothing
deeper. The prescription for Valium to treat his supposed "depression" was
refilled many times. And sometimes my husband unwittingly doubled the
dose or forgot to take it at all.
Always well dressed in the past, my handsome, athletic husband
began to need help matching his suit, tie, and shirt. I started to lay out his
clothes for the next day before we went to bed at night. I made sure to tell
him what fun I had selecting the outfits, but I was embarrassed to be doing
this task. I never mentioned it to others.
Then in 1973, a major stroke paralyzed him on one side, and I
replaced the Brooks Brothers suits with sweatsuits, which he soon stained
with food. The stroke took away his language ability, transforming a man who
had made his living through eloquent writing into someone who had to rely
entirely on words of one syllable. Neurologists and physical therapists told
me not to expect any improvements in his speech though he did learn to
walk again, ever so slowly, with a leg brace and a walker. Life was very hard
for all of us, but it was especially horrible for my husband. He became
frustrated beyond comprehension.
At times he did not seem to recognize our children or me.
Sometimes he appeared thoroughly perplexed about our home. I remember
him angrily rattling the doorknob in an effort to go outside but not being able
to open the door. And yet I also recall his having enough of his former self
that when he looked at our young baby, tears would run down his face.
His abilities continued to decline. As soon as I became the least
bit comfortable with his current condition, he would take another step in the
downhill progression of dementia. I felt completely overwhelmed. At times I
was diapering both our youngest child and my husband. There"s no way I can
do this, I would think to myself.
Finally things came to a head. My husband kept opening the door
to go outside — as if to escape from what was happening to him — and my
toddler would follow him out. Soon our son started trying to open the door
and walk out on his own (this was before safety devices were so readily
available). I realized I had to act — proactively, positively, and immediately,
before my husband and son left home and got lost. I installed a new handle
higher on the door, leaving the old knob intact but disabled. My son could no
longer reach the door. More incredibly to me, my husband didn"t understand
the concept of the new handle: he would repeatedly go over to the door, try
the old knob, and think that the door was broken.
This tiny event made me realize that I could make some changes
in the way we were living. I could stop walking on eggshells, in fear of what
would happen next, and start making a positive difference in our surroundings
and in my approach to his illness. I"m a very competitive person, and I started
thinking of the entire situation as a game — a brand-new game I wanted to
win. I knew I had to get suited up and be ready to play. Each daily task —
eating, dressing, toileting, everything — was a new inning, a new round in
this game.
I stopped making excuses for the changes in his behavior and the
decline in his cognitive functions. The neurologist had told me that my
husband"s disease was progressive and would be fatal — and in an odd way,
that knowledge helped me. It gave me the energy I needed to cope with what
he and I both faced, because I knew that the situation would not go on forever.
I vowed to learn to live with this person who was inhabiting the
body of the man I cherished. I had to detach myself emotionally from the man
my husband used to be and live now with the man he had become. The task
at hand — this minute, and every minute of every day — was to ensure my
family"s survival; I couldn"t waste time focusing on my lot in life. I had to deal
with the reality of today.
I decided not to heed the hospital social workers who told me that
my husband would be "fine" if he went to live at an institution for the mentally
ill or at a nursing home for the elderly, where he would be with others
suffering from dementia. In that era, I did not trust that hospital and nursing-
home workers would try to connect with him. And I knew that if he stayed at
home, I could still reach parts of this man. A great deal of the time, his
emotions seemed akin to mine. If I can reach him on an emotional level, I
thought, instead of on a verbal or cognitive one, maybe life can be less
threatening and frustrating for him.
I started a two-part list of issues related to his illness. Those
elements that I thought could be changed, ameliorated, or implemented I put
in part one. The elements that no amount of concentrated effort could ever
change I listed in part two. I wrote "improved mobility" on the first list, while I
relegated "return of speech" to the second. I placed "daily laughter" on the list
of goals that could be implemented and "planting the garden" on the list of
those that could not. Eventually my lists filled a spiral-bound notebook, with
several hundred entries.
After putting into practice the ideas and goals on the first list, I
found that a smile from my husband, calmness in our household, meant a
win for all of us. I wanted to laugh at the end of the day, not curl up in a
corner or break down in despair.
From the items in my notebook I developed five simple tenets,
which I now teach to people who care for patients with Alzheimer"s disease
or related forms of progressive dementia such as vascular dementia, Pick"s
disease, and Lewybody disease. These ideas are the basis for the
humanistic approach to caring that I call "habilitation." The literal meaning of
habilitate is "to clothe or dress," but I use it in the sense of "to make
capable," which is actually an older meaning of the word. A habilitated person
with dementia can live using his or her upper limits of function, intellect,
emotion, and spirit. Using the tenets of habilitation, both patients and care
partners can feel successful at what they do, rather than feeling constantly
weighted down. (I prefer the terms "care partner" or "habilitator" to "caregiver,"
which assumes less involvement on the part of the patient.)
The following are the tenets that I developed, first for my own use
at home and later for the use of other patients with dementias.

1. Make the Physical Environment Work. Simplify the environment.
Accommodate perceptual loss by eliminating distractions.

2. Know That Communication Remains Possible. Remember that the
emotion behind failing words is far more important than the words themselves
and needs to be validated. Although many losses occur with this disease,
assume that the patient can still register feelings that matter.

3. Focus Only on Remaining Skills. Value what abilities remain. Help the
patient compensate for any lost abilities without bringing them to his or her
attention.

4. Live in the Patient"s World. Never question, chastise, or try to reason with
the patient. Join her in her current "place" or time, wherever that may be, and
find joy with her there.

5. Enrich the Patient"s Life. Create moments for success; eliminate possible
moments of failure, and praise frequently and with sincerity. Attempt to find
humor wherever possible.

These tenets require continuous examination of how the patient
thinks, feels, communicates, compensates, and responds to change,
emotion, and love. Improving understanding in these areas can lead to the
biggest successes in treatment.
Along with my direct experience, my decades of work with
professional and family care partners have shown that the habilitation
approach works. Having worked with thousands of patients and care partners
over the years, I have come to know that even people with fatal neurological
illnesses still possess the innate drive to maximize their potential. After
observing the success of the habilitation approach, colleagues and friends
began to study and implement the tenets themselves, easing the burden of
care partners, developing activities for Alzheimer"s patients, studying those in
long-term care, and addressing their special architectural and interior design
needs. All of these researchers from varying disciplines have long believed in
and studied the innate drive that remains in people with neurological diseases
such as Alzheimer"s. This shared belief has led to a clearer understanding of
why we should continue to focus on patients" positive aspects and remaining
skills.
During the years I care partnered with my husband, I clarified the
tenets, and both he and I were able to succeed at living under our changed
circumstances. When he died in 1976, I moved back to my parents" home
with our four children, whose ages ranged from four to sixteen. I had told my
parents that I wanted to stay with them just for a few weeks to figure out what
I should do with the rest of my life; instead I stayed for fifteen years. The
children grew up, and I bandaged cut fingers and injured spirits. They
participated in Pop Warner football, Little League baseball, high school
soccer, track, and championship swimming. They found friendship and love
and went on to colleges and careers. Now that they are enriching the lives of
others, I often wonder how they would have matured without the years of
turmoil and distress, fear of the unknown, and terror of the known that they
endured. Perhaps support and love for all of our family — my husband
included — offset family tragedy.
After moving in with my parents, I immediately began working as a
nursing assistant in a nursing home run by a local hospital. I soon became
director of restorative services, which let me initiate a program to try to help
several residents who had progressive dementias — and who at that time
bore such lofty diagnoses as "organic" and "chronic" brain syndrome. Before
long, newly admitted people wanted to be included in the program, which was
based on the habilitative tenets described above. I led daily sessions with the
patients, worked with the care partners at the facility, and developed a
support group for spouses. I have been leading such groups continually since
1978, and this work remains a great joy in my life.
The nursing home developed a special-care unit for the patients in
the program, and soon we recognized that they were doing much better
cognitively than they had done before and were participating more fully in
daily living activities, such as dressing and bathing. All of the patients
appeared calmer, which meant that their medications could be reduced. In
this unit, restraints were removed; hugs were instituted.
After successfully mentoring the staff and performing daily
cognitive and supportive interactions with a population that grew to comprise
more than half of the patient roster at the facility, I attempted to have this new
kind of care — the habilitative approach — recognized by state and national
regulatory agencies concerned with confidentiality and the right to a private
diagnosis. But in the 1970s, civil libertarians and others were loath to have
specific beds set aside for patients with dementias. They were concerned
that such groupings would reveal the patients" diagnoses, which would be an
invasion of privacy.
I was very lonely during that time. I had no one to talk to about
changing the scene for cognitively impaired adults. Alzheimer"s was
beginning to be given as a diagnosis, even though it was treated as a brand-
new discovery; but except for a few colleagues at the nursing home, no one
was willing to listen to my ideas. I was so elated when I discovered John
Panella at Cornell University, who was studying the impact of special
programming on patients with Alzheimer"s disease at a day care facility in
White Plains, New York. At last I had discovered someone else who believed
that we could make a difference in the lives of Alzheimer"s patients.
The establishment in 1980 of the National Alzheimer"s
Association gave me and the growing number of concerned individuals and
organizations renewed courage to fight for specialized housing and
programming. By 1981 the program at the nursing home where I worked
became an officially sanctioned special unit. As attempts to duplicate it
popped up all over the Northeast, I became happily busy teaching and
mentoring.
During the next two decades, the National Alzheimer"s
Association grew, with branches in every state offering family support and
patient care, professional education, research opportunities, and advocacy.
And as other professionals became interested in the care of people with
Alzheimer"s, the effort to institute habilitative settings became easier.
Advocates traveled to state houses and government agencies to describe the
major differences tha...