I’M STILL HERE by John Zeisel
A New Philosophy of Alzheimer’s Care
QUOTES FOR DISCUSSION
I have learned over the last fifteen years that treating people
with Alzheimer’s the old way was often better. In order to treat people living
with Alzheimer’s as people rather than as patients, we first have to
appreciate their capabilities as well as their losses.
(John Zeisel, “I’m Still Here,” page 2)
…the treatment principles involved are equally valid for autism,
mental illness, mental retardation, manic depression, diabetes, HIV, and even
for a simple cold, or a twisted knee.
…the physical environment, the communication, and the programs all
independently act to reduce residents’ symptoms, including agitation, anxiety,
aggression, and apathy.
I advocate treating people living with Alzheimer’s a “people”
first and then as those with an illness. I advocate including people living
with Alzheimer’s in society – at museums and theaters, among other places. I
explain that people usually live with Alzheimer’s for over a decade and that
for much of that time they can function with less help than most people think,
can enjoy themselves, and things.
(John Zeisel, “I’m Still Here,” page 3)
1 The Skills and capacities of people living with Alzheimer’s that
don’t diminish over time, or do so more slowly, provide windows for connection
and communication.
2. Through those windows lie opportunities to establish and build
new and vibrant relationships that can sustain us and them over time,
supporting both care and well-being.
(John Zeisel, “I’m Still Here,” page 4)
Love is a universal language understood far into the illness, even
to the end of life. If everyone involved with the illness learns to say “I love
you” to the other, the other person will understand and be more present and
relationships can grow.
Everyone has preexisting, instinctual abilities that building a
caring relationship can capitalize on, such as our ability to understand music,
facial expressions, and human touch – the meaning of a song, a smile, and a
hug. Drawing on these innate abilities enables everyone living with Alzheimer’s
to function better than expected, because they are never lost.
Memories are not held in just one part of the brain into which we
place them like a DVD disk for later retrieval. Rather, we place attributes of
experience in various parts of the brain – faces in one part, colors in
another, emotions related to the experience in another. Later, a brain function
that acts like a call to Scotty in Star Trek – “Beam me up, Scotty” – retrieves
them. Art, music, environment, and Alzheimer’s – competent communication help
those memories reappear, just as Scotty helps Captain Kirk and his crew
reassemble aboard the Enterprise.
Alzheimer’s’ is treatable, and the best treatment is one that
carefully balances nonpharmacological with pharmacological approaches.
Nonpharmacological treatment includes carefully planning and managing both the
social and physical environment of the person.
(John Zeisel, “I’m Still Here,” page 5)
It is important that all caregivers burdened with guilt remind
themselves that Alzheimer’s’ is an organic illness of the brain, and that
sharing care-partnering tasks with others is keeping a promise, not breaking it.
Partners get sick more often that do the people they care for:
Those who care for people living with Alzheimer’s’ tend not to take care of themselves.
They tend to get sick more often than for longer periods than the people they
care for. Taking care of oneself is the surest way to help the person you love.
People living with Alzheimer’s live in the present moment.
Mindfulness of being in the present moment ourselves is a first step toward
being in the mind of a person living with Alzheimer’s. Being totally prestn to
our own breath through medication can help us experience that fleeting moment.
Many people as they grow older forget one thing or another. This
is not Alzheimer’s.
(John Zeisel, “I’m Still Here,” page 6)
An Alzheimer’s diagnosis is seen as an Alzheimer’s “sentence.” But
this just isn’t so. Throughout the more than decade-long progress of the
disease, the person crying out, “I’m still here.” We all need to start hearing
that cry before it fades away completely.
(John Zeisel, “I’m Still Here,” page 7)
But to build healthy relationships with those living with Alzheimer’s’,
each of us has to connect through those capacities and facilities that don’t
diminish with the progression of the disease, or at least diminish most
gradually. When we listen to music or visit a museum together, we are building
such relationships. We are reducing the secondary and tertiary symptoms of
Alzheimer’s. Those living with Alzheimer’s who use part of their brains that
still function well, feel enabled and competent, and are less apathetic, agitated,
anxious, and aggressive.
(John Zeisel, “I’m Still Here,” page 9)
It is easy to count the ways that the analogy between Alzheimer’s
and childhood is inaccurate. A child has limited history and memories, while
people in old age with or without Alzheimer’s’ have a long history of
experience. They have lived through several historical eras, in various cities
and perhaps countries, and they have experienced the world changing around them
in major way. They have seen technology develop, and political upheaval. Most
have children and grandchildren. They know to repair broken objects, cook,
build houses, teach, write, paint, play piano, knit – to name a few of the
things that they can do that children can’t. They have profound personal life
experiences. Some have fought in wars, marched for peace, suffered in concentration
camps, or moved from the countries of their birth as refugees. They have held
responsible jobs and achieved accolades of their achievements. They are
definitely are not like children.
(John Zeisel, “I’m Still Here,” page 10)
What kind of future is it if people can’t remember their children
and where they are?” Those who don’t understand the disease ask. That question
assumes that memories are gone, which they are not, they are just increasingly
inaccessible without some help. It also assumes that the future is based in the
past and in past memories. It is not. The future is based on many present
moments, moments that the person experiences fully every day and every minute.
The future for people living with Alzheimer’s promotes new relationships,
quality of life, and joy.
(John Zeisel, “I’m Still Here,” page 11)
Neither can our relationships be the same. While the person still
cares for us and continues to love us and we them, we must have new
expectations and build a new relationship. The first step is to discard old
expectations and role relationships that limit our ability to see the person
and relate to him or her in a new way. Each family member hold one key to the
person’s past, present, and future.
(John Zeisel, “I’m Still Here,” page 11)
SO WHAT, IF THE NAME IS FORGOTTEN?
Recalling a name or a recently posed question is really a small part of his or
any of our memoires.
(John Zeisel, “I’m Still Here,” page 12)
MEMORIES STILL THERE: SENSE MEMORIES
smell/fragrance memory
touch memory
visual memory
body memory
music memory
taste memory
sound memory
proprioceptive body memory
(John Zeisel, “I’m Still Here,” page 13)
MEMORIES STILL THERE: EMOTIONAL MEMORIES
times of joy
sad memories
fear memory
pain memory
love memories
excitement
regret
shock
compassion
(John Zeisel, “I’m Still Here,” page 13)
MEMORIES STILL THERE: BODY MEMORIES
having a baby
riding a bicycle
throwing a baseball
putting a golf ball
dancing the fox-trot
breaking a leg
carrying a heavy load
(John Zeisel, “I’m Still Here,” page 13)
MEMORIES STILL THERE: SKILL MEMORIES
cooking
dancing
drawing
knitting
bowling
sewing
digging
(John Zeisel, “I’m Still Here,” page 13)
MEMORIES STILL THERE: HARDWIRED MEMORIES
the sun
smiles
fireplace
(John Zeisel, “I’m Still Here,” page 13)
MEMORIES STILL THERE: ART MEMORIES
paintings
poetry
music
sculpture
dance
(John Zeisel, “I’m Still Here,” page 13)
MEMORIES STILL THERE: ENVIRONMENTAL MEMORIES
color
place
object
texture
environmental mood memory
spatial memory
(John Zeisel, “I’m Still Here,” page 14)
MEMORIES STILL THERE: SONG MEMORIES
popular tunes
religious hymns
children’s songs
military music
dance music
(John Zeisel, “I’m Still Here,” page 14)
MEMORIES STILL THERE: COLLECTIVE MEMORIES
MAJOR EVENTS EXPERIENCED
World War I
D-day
The great NYC blackout
Elvis Presley on Ed Sullivan
Assassination of Kennedy
9/11 Terror attack
(John Zeisel, “I’m Still Here,” page 14)
MEMORIES STILL THERE: AUTOBIOGRAPHICAL MEMORIES
life period memories
childhood
school
teenage
hunting
going to the beach
chopping firewood
special events
family memories
wedding
child’s graduation
(John Zeisel, “I’m Still Here,” page 14)
MEMORIES STILL THERE: STORY MEMORIES
How I met my spouse
When I was a child…
That time when…
childhood events
When I saw my first movie
fairytales
(John Zeisel, “I’m Still Here,” page 14)
MEMORIES STILL THERE: SOCIAL NORMS MEMORIES
How to be polite to others at dinner
how to greet someone coming to visit
how to behave at holiday parties
How to behave at religious ceremonies
How to behave at a wedding
How to say hello
(John Zeisel, “I’m Still Here,” page 14)
MEMORIES STILL THERE: TIP-OF-THE-TOUNGE MEMORIES
Names you know, but can’t recall without a cue
(John Zeisel, “I’m Still Here,” page 15)
MEMORIES STILL THERE: HABIT MEMORIES (LEARNING)
Eating with chopsticks.
Putting eyeglasses in the same spot every night
Setting a table the same way
(John Zeisel, “I’m Still Here,” page 15)
MORE COMPROMISED MEMORIES: COGNITIVE, MAP, FINDING
I know where I am when I’m there
I know where I am going if I can see my destination
I know where I was going when I get there
Getting to the bathroom at night without a light
Finding way back to a childhood haunt
Getting home from wherever you are
(John Zeisel, “I’m Still Here,” page 15)
MORE COMPROMISED MEMORIES: FACTUAL, LEARNED
Things I know: names of presidents, grandchildren’s birthdays
Test memory: “Cramming for an exam” memory
(John Zeisel, “I’m Still Here,” page 15)
MORE COMPROMISED MEMORIES: COMPLEX SEQUENCE
brushing one’s teeth
organizing a meal
cooking a complex meal
getting dressed
putting a diaper on a baby
(John Zeisel, “I’m Still Here,” page 15)
MORE COMPROMISED MEMORIES: MESSAGES
Remember what was just said
Remembering a person you recently met only once
Remembering a phone message
A phone call you just finished
A phone number
(John Zeisel, “I’m Still Here,” page 15)
MEMORIES READILY ACCESSIBLE WITH APPROACHES
The memories listed as “MEMORIES STILL THERE”
All these memories except those at the end of the list are readily accessible
to people living with Alzheimer’s and their partners. Message, factual,
learning, way finding, and complex sequence memory can be accessed with
appropriate approaches and communication.
(John Zeisel, “I’m Still Here,” page 16)
UNIQUE CAPABILITIES: EMBRACE THEM
Everyone has their own unique capabilities. These may include reading the
newspaper out loud to others, singing, gardening, or dancing. Whatever they
are, they are there and it is our job to uncover, celebrate, and embrace them
so that everyone living with Alzheimer’s, no matter where in the progress of
the illness they are, maintains their dignity, independence, and self-respect.
(John Zeisel, “I’m Still Here,” page 17)
ARTISTIC EXPRESSION
An artist expresses himself from his heart, avoids being overly self-critical,
and can unselfconsciously express his “self” in his art. The lack of a fully
functioning brain “comparer” makes many people living with Alzheimer’s better
artists than they were before the disease… often freer, more honest, and more
expressive than most others.
(John Zeisel, “I’m Still Here,” page 17)
EXPERIENCES WITH ART BUILD NEW RELATIONSHIPS
Art experiences enable them to focus for longer periods, to perceive and
express their perceptions, and to access both long and short term memories. Art
of all sorts also enables people living with Alzheimer’s and those without it
to focus together on something outside themselves, rather than on each other.
Such shared experiences bring everyone closer together and serve as a basis for
building new and strong relationships.
(John Zeisel, “I’m Still Here,” page 19)
JUST AS ELOQUENT, ALTHOUGH EXPRESSING THEMSELVES DIFFERENTLY
It is too easy to classify those who have lived with Alzheimer’s for many years
as nonpeople because they might no longer relate to the world the same way they
used to, or as we think we do. Discarding people in this way reduces their
quality of life and ours. We burden them with disregard and loneliness. We
burden ourselves with “having to visit” again and again with nothing to say and
do.
(John Zeisel, “I’m Still Here,” page 21)
NEW RELATIONSHIP - GET TO KNOW EACH OTHER AGAIN
Why does society shunt these people away? One reason for this is our own
ignorance of how to build a relationship with someone going through the changes
associated with Alzheimer’s. …every relationship…can still be vibrant and
rewarding – even improved from earlier relationships – but only if both people
first get to know each other again.
(John Zeisel, “I’m Still Here,” page 22)
NO ONE LIKES FINALS WEEK
“Hi, Mom, remember me?” is a test of memory, which can be upsetting, and is
likely to elicit the anxious response “No, who are you?”
(John Zeisel, “I’m Still Here,” page 23)
INTRODUCE YOURSELF
Look her directly in the eye, and say, “Hi, Mom, I’m you son Alex, we have
wonderful times together, and I love you very much.” Such an introduction is
more likely to elicit a smile and the response: “Oh, Alex, it’s so nice to see
you.”
(John Zeisel, “I’m Still Here,” page 23)
MEMORIES KEEP US ATTACHED TO LIFE
They stopped visiting because, “what’s the use?” The “use,” I tell them, is
that they and their memories keep their friend attached to life.
(John Zeisel, “I’m Still Here,” page 24)
PHOTOGRAPHS
I suggest they assemble a book of photographs from trips they have taken
together or from an anniversary party. Introduce themselves by name, and look
through the book, recalling feelings they may have had at the time, and talking
about the wonderful memories.
(John Zeisel, “I’m Still Here,” page 24)
TOO DISTRACTED TO LOOK AT PHOTO ALBUMS?
The trick is to focus you own attention intensely on the task at hand, no
matter what else is happening, and to repeatedly ask for help understanding the
photographs.
(John Zeisel, “I’m Still Here,” page 24)
LOVE – THE UNIVERSAL LANGUAGE
Expressing love to someone living with Alzheimer’s is one of the keys to making
and keeping contact. Love is a universal, hardwired language. People understand
until the end of life that by loving them you accept them for who they are.
(John Zeisel, “I’m Still Here,” page 24)
SHIFT YOUR POINT OF VIEW
…their family member has changes and so has the relationship. The road to
easing the burden of Alzheimer’s beings with shifting one’s point of view.
(John Zeisel, “I’m Still Here,” page 25)
THE GIFTS OF ALZHEIMER’S
Each of us grows and changes continually. If we choose to stay connected others
as they and we change during the passage of the disease, we learn about
ourselves, about relationships, and even about the meaning of life.
(John Zeisel, “I’m Still Here,” page 25)
INTO THE LIGHT
If others begin to avoid her because she’s “different,” she become even more
isolated and feels even more that she is not there. When people help her
celebrate her continuing abilities and successes, she can “come out of the
closet” of shame and into the full light of day. She can fully be herself.
(John Zeisel, “I’m Still Here,” page 26)
I AM A WHOLE PERSON
“I was a whole person the moment I was born. I was a whole person, yes, even in
my teen years. I am a whole person now. Even near death, even in death I am a
full and whole person.” -5 January 2007, Richard Taylor, sixty-three years old,
diagnosed with early on-set Alzheimer’s at age fifty-nine.
(John Zeisel, “I’m Still Here,” page 28)
WHAT HAVE I DONE WRONG?
The person living with Alzheimer’s becomes less aware of being ill. On the
other hand, he remains as aware as ever of the fact that he either fits in with
others socially or he doesn’t. He feels even worse because he may remember only
with difficulty and therefore understand even less what he has done wrong and
why he is being berated. He still has access to his many memories, but has a
harder time directing himself to the right part of his “memory bank.”
(John Zeisel, “I’m Still Here,” page 29)
RESPECT AND DIGNITY: ADDRESSING THE PERSON DIRECTLY
Never referring to him indirectly when you are in his presence.
(John Zeisel, “I’m Still Here,” page 30)
RESPECT AND DIGNITY: SUBTLY HELPING HIM TO BE IN CONTROL
Neatening clothes that may be out of place, quietly reminding him how to get
somewhere on his own, waiting until he expresses himself rather than speaking
for him.
(John Zeisel, “I’m Still Here,” page 30)
RESPECT AND DIGNITY: PROVIDING CUES
Keeping photographs and other mementos at hand that cue significant memories,
introducing these with a phrases like, “You remember little Pie-Pie-, your
grandson.”
(John Zeisel, “I’m Still Here,” page 30)
RESPECT AND DIGNITY: NEVER TESTING THE PERSON’S MEMORY
Never asking, “Do you remember my name?” or showing him a picture and asking
“Do you remember who this is?”
(John Zeisel, “I’m Still Here,” page 30)
BE THERE
Touching her hand or shoulder – physically – always works to make her aware
that you are there, that she is there, and that you and she still have a
relationship. A family member’s presence is also always appreciated – even if
other say the person living with Alzheimer’s doesn’t know you’re there. She
does!
(John Zeisel, “I’m Still Here,” page 30)
MUSIC, IMAGES, PERFUME
Nonverbal forms of communication let the person with the illness know that
someone who cares for her realizes she is present. To sense her saying, “I’m
still here,” you first have to believe and be ready to hear it yourself. Respond to the signs: a smile, a raised hand,
a hug in response to a hug.
(John Zeisel, “I’m Still Here,” page 30)
PRIMARY BEHAVIORAL SYMPTOMS due to Alzheimer’s
Cognitive impairments: difficulty accessing memories about what to do in
specific situations, how to make casual conversation, organizing big complex
sequences of activities, speech deficits, using tools and utensils.
(John Zeisel, “I’m Still Here,” page 32)
SECONDARY BEHAVIORAL SYMPTOMS due to stress
A reaction to not being able to handle what is happening to him: 1) agitated,
striking out – disturbs us and others, therefore we attempt to control it. 2)
apathy – uninvolved with one’s surroundings. We tend to ignore or overlook it
because we are not being disturbed. Meaningful activities can treat this
symptom.
(John Zeisel, “I’m Still Here,” page 33)
AGGRESSION – NOT A SYMPTOM, A REACTION
Aggression is not a disease symptom. It is a natural reaction to feeling that
another person is being aggressive to her, reaction to other factors such as
unmet physical needs, inappropriate environment, upsetting personal
interactions.
(John Zeisel, “I’m Still Here,” page 34)
HUNGER or THIRST or PAIN
A person might get aggressive when she feels hungry or thirsty yet is unable to
identify and express those needs. Unrecognized and under treated pain can be
another overlooked cause of aggression.
Room temperature that is either too hot or too cold, a noisy
environment, lack of space can upset the person and lead to disturbing
behaviors.
(John Zeisel, “I’m Still Here,” page 34)
HOW WOULD YOU REACT?
People may be confused when suddenly being “cared for” and resist attempts to
provide care. How would you react if a complete stranger pretended to know you
and unexpectedly tried to pull down your pants? This is what the person with
Alzheimer’s may be experiencing.
(John Zeisel, “I’m Still Here,” page 34)
UNPROVOKED
It is important to realize that most people living with Alzheimer’s do not
strike out unprovoked and that partners have the responsibility to prevent
“resistiveness to care” from escalating into combative behavior.
(John Zeisel, “I’m Still Here,” page 35)
PREVENTING COMBATIVE BEHAVIOR
This can be achieved by modifying strategies for bathing, rooming, and eating
by for example, substituting washing up with a facecloth, delaying care until
the person has calmed down, or distracting the person with stories about their
past.
(John Zeisel, “I’m Still Here,” page 35)
AGITATED, A SIDE EFFECT, NOT A SYMPTOM
Being agitated or aggressive, a natural reaction when in a questionable
setting, clearly is not a disease symptom, but rather a side effect that can be
alleviated.
(John Zeisel, “I’m Still Here,” page 35)
WHAT ARE WE DOING?
I injured my left-knee ligament in a yoga class. I couldn’t walk as easily –
PRIMARY SYMPTOM. Walking more than I should, my knee hurt – a SECONDARY
SYMPTOM. Feeling pain, I got irritable -
a TERTIARY SYMPTOM. No one would define irritability as a symptom of an injured
ligament, but that’s what we do to people living with Alzheimer’s. We blame the
illness rather than understanding what we might be doing that contributes to
these outcomes.
(John Zeisel, “I’m Still Here,” page 39)
THE 4 A’S (understanding proper treatment and response)
Agitation: Nervous behavior disruptive to others
Anxiety: Worrying about things we can’t control
Aggression: Striking out or shouting
Apathy: Lack of involvement
(John Zeisel, “I’m Still
Here,” page 40)
AGITATION
Nervous behavior due to boredom, disruptive to others. The actual
symptom is the lack of ability to self-initiate activities, resulting in
restlessness, repeated actions, shouting, and talking continually.
(John Zeisel, “I’m Still
Here,” page 40)
ANXIETY
Worrying about things we can’t control; due to not having a clear
picture of time and relationships, exhibiting nervous energy, retreating from
social situations.
(John Zeisel, “I’m Still
Here,” page 40)
AGGRESSION
Striking out or shouting at others to get attention and create
something lively; due to inability to control one’s own impulses, not understanding
what is happening. “Why am I not allowed to go outside?”
(John Zeisel, “I’m Still
Here,” page 40)
APATHY
Lack of involvement due to inability to perceive and remember the
future. Lack of having anything interesting to do. Non disruptive because it is
not directed at others, is often overlooked.
(John Zeisel, “I’m Still
Here,” page 41)
NO CURE does not mean NO TREATMENT
When dementia was labeled “senility” and “hardening of the arteries,” it was
considered an attribute of natural aging and few people paid much attention to
this condition because they considered it chronic, hopeless, and untreatable.
Shifting Alzheimer’s into the same class as cancer turns Alzheimer’s into a
treatable condition, rather than a hopeless one, bringing them back to the
realm of the living, from limbo in which they are merely waiting to die.
(John Zeisel, “I’m Still Here,” page 42)
REDUCING AND IMPROVING
Treatment means reducing symptoms and improving conditions, as well as curing
illnesses.
(John Zeisel, “I’m Still Here,” page 44)
THE 4 A’S CAN BE TREATED
The four A’s can all be treated – that is, reduced – through a coordinated
evidence-based approach in which social and physical environment as well as
medications are creatively employed.
(John Zeisel, “I’m Still Here,” page 46)
3 STEP APPROACH
1. Describe the behavior and identify contextual triggers.
2. Adapt the caregiver, physical environment, or medication.
3. Employ lowest possible dosage of pharmacologic treatment IF needed.
(John Zeisel, “I’m Still Here,” page 47)
THOSE CELLS HOLD HOPE
The good news is seldom evoked. People living with Alzheimer’s still have 90
billion active brain cells. Those cells hold memories, the ability to learn the
ability to be creative and to enjoy life.
(John Zeisel, “I’m Still Here,” page 56)
INSTINCT
Our brains contain hardwired, universal, preexisting images and abilities –
sometimes called instincts or natural feelings.
(John Zeisel, “I’m Still Here,” page 56)
THEY ARE NEVER LOST
We already have indications of certain hardwired human skills and memories.
Among these are facial expressions, responses to the touch of another, singing,
and landmarks for finding – all abilities that last our entire lives, even if
we have Alzheimer’s. hardwired brain functions are important for people living
with Alzheimer’s because they are never lost and are always accessible.
(John Zeisel, “I’m Still Here,” page 59)
UNIVERSAL – IN EVERY CULTURE
Expressing and recognizing emotions in human facial expressions are hardwired,
universal, and preexisting – they’re the same in every culture.
(John Zeisel, “I’m Still Here,” page 60)
MASSAGE
Massage releases oxytocin. It makes us feel comfortable, open toward one
another, and caring. Human touch is seldom misunderstood.
(John Zeisel, “I’m Still Here,” page 61)
NATURE
It is likely that the need for contact with the natural environment and the
feelings we have about nature and being outdoors are hardwired, partly because
this is the source of our food. Sunshine, flowers, shade, moonlight, and trees
are all so much a part of our basic nature that on one has to be taught to
respond appropriately to such stimuli.
(John Zeisel, “I’m Still Here,” page 62)
THE CREATIVE ALZHEIMER’S BRAIN: The Interpreter
Located in the left brain, the interpreter enables us to make sense of the
world by developing images of reality, stories that interpret what we sense.
This part of the brain functions well in people with Alzheimer’s, who can make
up stories as well as anyone else.
(John Zeisel, “I’m Still Here,” page 63)
SUCCESSFUL DAY – Interpreter
If a person with Alzheimer’s fills his day with tasks and adventures that rely
primarily on the INTERPRETER in the brain, he is likely to have a successful
day of quality experiences.
(John Zeisel, “I’m Still Here,” page 67)
THE CREATIVE ALZHEIMER’S BRAIN: The Actor
Based on the interpreter’s images, the brain perceives, conceptualizes, and
engages the rest of our body to act. They are less aware of the limitations of
their bodies and minds. With cognitive mapping ability impaired, they are still
happy to walk away from home without realizing thy may get lost.
(John Zeisel, “I’m Still Here,” page 64)
OUTINGS AND EXPERIENCES – Actor
Activities that stimulate the brain’s ACTOR functions, such as museum visits,
short films, and listening to poetry are extremely accessible to people living
with Alzheimer’s.
(John Zeisel, “I’m Still Here,” page 67)
THE CREATIVE ALZHEIMER’S BRAIN: The Comparer
People continually assess outcomes of actions by comparing what actually
happens to what was expected. If we expect to find out care parked on the third
floor and it isn’t there, we try another floor.
The A-10 nucleus of the frontal lobe is damaged early in the illness. He
may repeat an action over and over, even when the results are not what he wanted.
(John Zeisel, “I’m Still Here,” page 64)
AVOID FRUSTRATION - Comparer
While it is always good to exercise our brains, activities that rely primarily
on the person’s brain COMPARER, (comparing a recent experience with one of the
past), are likely to be more difficult and lead to frustration.
(John Zeisel, “I’m Still Here,” page 65)
MYTH of LOSS OF SHORT TERM MEMORY
Alzheimer’s disease is popularly seen as memory loss because on the surface a
person appears to “forget” things. Because hippocampal damage results in people
not being able to index and insert experiences into their brains as easily as
before, it appears to others that the person is having difficulty remembering
immediately experiences soon after they occur. Most people believe that the
main symptom associated with Alzheimer’s is that people “forget” things, but it
is not.
(John Zeisel, “I’m Still Here,” page 66)
MYTH of LOSS OF SHORT-TERM MEMORY AND KEEPING LONG TERM MEMORY
The oversimplified view is not helpful in understanding the full
complexity of the person, nor does it lead to developing effective treatment or
to living a quality life. The degree of difficulty a person has indexing and
then recalling an event changes throughout the illness. Just as your key
unlocks the glove compartment where maps and other information are stored, the
hippocampus supports a variety of functions including emotion and long-term
memory, provide access to the memories already stored.
(John Zeisel, “I’m Still Here,” page 67)
INDEXING AND RETRIEVING MEMORIES
The hippocampus enables us to embed memories into our long-term memory banks,
tagging them for later retrieval. Because this brain element is damage early in
the illness, people seem to have difficulty “remembering” things that have just
happened, unless they are prompted and cued by a person or object in their
context; tastes, smells, and visual images enhance access to memories.
(John Zeisel, “I’m Still Here,” page 68)
ALL OF OUR MANY MEMORIES ARE IN OUR BRAINS.
We don’t forget; it is just harder to access them without help.
It’s not surprising that cueing memories with key words, photos, and music is a
tried and true method of therapeutic interaction with people who are living
with Alzheimer’s.
(John Zeisel, “I’m Still Here,” page 68)
REPETITION
Using repetition and repeated success, people living with Alzheimer’s can learn
and can remember. Mary gets angry or upset when you seat someone else in her
chair. Before moving to the residence, Mary didn’t know where her chair was.
She must have learned it since getting there.
(John Zeisel, “I’m Still Here,” page 69)
COMPLEX TASKS
Over fifty steps are required just to get dressed, and that’s only one of the
sequences we need to perform every day. Brushing teeth, taking a shower,
cooking breakfast, traveling to work, driving a car, paying bills, and shopping
are all extremely complex sequences. People living with Alzheimer’s with
damaged frontal lobe executive function find it difficult to carry out
seemingly simple operations that are actually extremely complex sequences. They
didn’t forget how to do these things; it’s not a memory problem. If there props
for the task are appropriately set up and visible, they can complete the tasks
successfully.
(John Zeisel, “I’m Still Here,” page 70)
IMPULSE CONTROL
When you or I get angry with someone in a social setting we don’t immediately
punch him. When we do something we later regret, we admonish ourselves to
better control our actions. Lack of social impulse control is not “forgetting”
how to behave; it is losing control over naturally occurring feelings. If
someone tens to get angry easily, make sure that a birthday party is held in a
dining room, rather than an institutional community room that he sits next to a
favorite grandchild and that the grandchild wear a festive name tag. The dining
room lets him know “dinner behavior” is appropriate. The grandchild evokes
hardwired caring instincts, and the name tag cues his memory.
(John Zeisel, “I’m Still Here,” page 71)
HALLUCINATIONS AND DELUSIONS: Emotional damaged system
Misperceived: the damage system is emotional. The person sees and recognized
his wife (visual and perceptual), but something emotional just doesn’t
computer. He doesn’t feel about her as he knows he would feel if the person
were his wife. The wife might quietly leave the room, then reenter smiling
broadly and saying, “Hi, Joshua, I’m you wife, Sylvia, and we love each other
very much.”
(John Zeisel, “I’m Still Here,” page 73)
HALLUCINATIONS AND DELUSIONS: Visual and perceptual damaged system
Shifting shadows look like a person hiding in the shadows. If moving shadows
are causing a problem, someone can close the curtains at night and turn on a
soft light.
(John Zeisel, “I’m Still Here,” page 73)
HALLUCINATIONS AND DELUSIONS: psychologically damaged system
The person feels that everyone she sees is taking advantage of her – paranoia.
Psychological and paranoid hallucinations and delusions are more difficult to
affect and might require more immediately medical interventions. Some factual mistakes may be the result of
poor memory and eyesight, and should not be mistaken for delusions.
(John Zeisel, “I’m Still Here,” page 73)
NOT CRAZY
Knowing that delusions and hallucinations are a result of specific brain
changes out to help partners realize that the person living with Alzheimer’s is
not “crazy.” It enables them to accept that in many cases a specific action can
help reduce hallucinations and delusions, such as leaving the room, reintroducing
self, showing his profession a diploma, or changing the lighting in the room.
(John Zeisel, “I’m Still Here,” page 74)
HALLUCINATIONS AND DELUSIONS: NOT ALL BAD
Not all delusions and hallucinations are bad things that need to be changed. But
when they cause the person constant pain or are dangerous and can’t be changed
non-pharmacologically, medications are likely to be needed.
(John Zeisel, “I’m Still Here,” page 75)
HANDBAG - PERSONAL IDENTITY
What is kept in a handbag, except one’s “personal identity,” and
if you don’t have you bag, how do you know who you are? All your important
stuff is in that bag. What may be needed to make her who is to give her purpose
and make her feel like a person who is valued.
(John Zeisel, “I’m Still Here,” page 75)
LANGUAGE: 2 deficits – not necessarily both impaired.
Language centers become impaired and may be less able to find the words they
need to express themselves or they appear not to be able to understand others.
These two deficits do not necessarily go hand in hand. A person with temporal
lobe dementia is likely to have greater difficulty in find the words to express
a thought that in understanding others.
(John Zeisel, “I’m Still Here,” page 75)
LANGUAGE: use other senses to understand
Just because a person living with Alzheimer’s is not able to find certain
words, she is likely to know the meaning of what she wants to say. Somewhere
deep inside she knows what she wants to say. The trick is to use all the other
senses we have to read what the other person is trying to express.
(John Zeisel, “I’m Still Here,” page 76)
OUR INTERNAL CLOCK
When the area called the chiasmatic nucleus is damaged, our natural internal
time clock, (set closer to a 25 hour day than 24 hours), goes haywire. Our
internal clock enables us to know what time of day it is, even in a windowless
conference room. Someone with Alzheimer’s asks repeatedly, “When are we
leaving?” or waking up in the middle of the night thinking that it’s daytime.
(John Zeisel, “I’m Still Here,” page 76)
EMOTION
The amygdala maintains its function late into the disease and is the key to
communicating and having a fulfilling relationship with a person living with
Alzheimer’s. Whenever we have an emotional reaction to a person, event, or
place, or we express ourselves emotionally, our amygdalas are at work.
(John Zeisel, “I’m Still Here,” page 77)
MORE GOES ON IN THE BRAIN
In sum, a great deal more goes on in the brain of a person living Alzheimer’s
than mere memory loss. We need to be sensitive to all the changes if we are to
avoid throwing out the baby with the bathwater – if we are not to discard the
person merely because we can’t deal with a “loss of memory.”
(John Zeisel, “I’m Still Here,” page 78)
THE NEED FOR ART
Visiting Art museums and attending poetry readings and concerts are relaxing
diversion in a life focused on family, work, and even recreations. Few of us
integrate artistic expression in to our daily lives, or even attend
performances and art exhibits regularly. We are the poorer for it. We each have
a need and natural aptitude for art that we realize how much we miss only when
we find ourselves without other supports in our lives.
(John Zeisel, “I’m Still Here,” page 79)
ART GIVES MEANING TO LIFE
The arts can provide meaning in what to many is experienced as an ever
increasingly meaningless life. Art connects people to their culture and to
their community. It gives meaning to life and it is meaning that people living
with Alzheimer’s so dearly crave.
(John Zeisel, “I’m Still Here,” page 80)
THEY CAN ENJOY ART EXPERIENCES
Partners have to believe that the person they love who is living with
Alzheimer’s without a strong short-term memory can actually have a satisfying
and enriching art experiences. Art can be therapeutic, but doing art isn’t
necessarily therapy. When you play with your dog at home, it is not pet
therapy. When you paint a serious picture or visit an art gallery it is not art
therapy, although it may have therapeutic effects. We label them as therapy
because do not really believe people with this disease can truly enjoy such an
experience as we do, we doubt they remember it, and therefore ewe do not
encourage art experiences as an integrate part of their everyday lives.
(John Zeisel, “I’m Still Here,” page 80)
ART LINKS BRAIN LOCATIONS
Art touches and engages the brain in a more profound way than other activities.
Music, painting , sculpture, comedy, drama, poetry, and the other arts link
together separate brain locations in which memories and skills lie.
(John Zeisel, “I’m Still Here,” page 81)
MUSIC: SENSING, KNOWING, FEELING
Music, for example touches parts of the brain that link what we sense, know,
and feel. As the brain is affected in Alzheimer’s disease and particular
locations and abilities are damaged, the fact that art touches so many areas of
the brains masks single-location deficits.
(John Zeisel, “I’m Still Here,” page 81)
NATURAL ARTIST
The more someone is in touch with his or her feelings, the more he or she can
appreciate art. The same is true for creating art. Artists who think too much
edit their work mentally before they can express the. Because people living
with Alzheimer’s tend to express what they think and feel at the moment, they
are natural artists and natural audiences for artistic expression.
(John Zeisel, “I’m Still Here,” page 81)
ART EXPRESSION AND APPRECIATION
A young child does not have to taught to relax when she hears a lullaby, nor
does she need to be taught to paint colorful picture, or to laugh at a silly
joke. These universal, preexisting, and hard wired abilities, lost ONLY LATE in
the progress of Alzheimer’s IF at all, serve as the basis for successful art
expression and appreciation throughout the progress of the disease.
(John Zeisel, “I’m Still Here,” page 81)
ART CLASSES
The first “Artists for Alzheimer’s” (ARTZ) program class began by teaching
technique, employing watercolor, acrylic paint, and colored pencil. Then she
moved on to conduct several classes concerned with still life drawing and
copying photographs, to give participants a sense of creating an art object.
She ended by getting participants to use art to express who they are – to
express their “selves” through art. This is something you can do with your
partner if you are inclined to the visual arts.
(John Zeisel, “I’m Still Here,” page 83)
ARTZ AIMS: PROVIDE EXPERIENCES
Provides regular artistic experiences, performances and hand-on involvement by
competent artists of all ages. Artists include comedians performing stand-up
comedy, actors reading plays and poetry, photographers taking pictures and
sharing their work, industrial designers and sculptors working in class, guitarists
and violinists performing, painters and graphic artist, and opera singers.
(John Zeisel, “I’m Still Here,” page 83)
CONTACT THROUGH ART COMMUNICATION
When his son saw the painting, he was moved to learn that so much feeling was
still alive in his father. You too can achieve contact with your partner’s
feelings through art communication. For each person coping with Alzheimer’s,
living in a world with less stigma associate with the condition will ease their
burden.
(John Zeisel, “I’m Still Here,” page 85)
ART TOURS: MEANINGFUL EXPERIENCES
Guided art museum tours broaden the range of meaningful art experiences
available to people living with Alzheimer’s.
(John Zeisel, “I’m Still Here,” page 87)
ARTZ “Artists for Alzheimer’s”
Take advantage of these programs (ARTZ) if they exist in your area, and
advocate for museum you frequent without such tours.
(John Zeisel, “I’m Still Here,” page 88)
MUSEUM TOUR: HOW TO - Day 1
Day 1: At their residence, introduce and allow them to enjoy and review some
art images or reproductions of selected artwork they will be viewing at the
museum they will be visiting.
(John Zeisel, “I’m Still Here,” page 88)
Choose paintings that elicit cognitive strengths of the participants and then
employ a question-asking approach that elicits participant’s perception and
discussion. (John Zeisel, “I’m Still Here,” page 90)
MUSEUM TOUR: 30 PRINTS FOR SELECTION
Thirty prints were presented to respondents in the selection interview. Ten
paintings seemed to be totally not understandable, ten other prints were
understood by some, and not by others, and ten everyone understood. Five of the
well-understood artworks were considered by participants to be too risqué to
hang in a home, while the other five were more acceptable.
(John Zeisel, “I’m Still Here,” page 91)
MUSEUM TOUR: HOW TO - Day 2 – the display
The same artworks they reviewed in their residence are on display and discussed
at the museum.
The size of each group is kept to 5 or 6 participants with one educator. Each
comes alone or brings a partner.
(John Zeisel, “I’m Still Here,” page
88)
MUSEUM TOUR: HOW TO - Day 2 – the questions
Interview people with Alzheimer’s about their reactions to an array of
paintings, sculptures and photographs at the museum. The participant, not the
educator, selects the art to be included in the tour. (John Zeisel, “I’m Still
Here,” page 90) Sample: “I need some
advice. Look at these paintings and tell me whether you think I should hang
this artwork in my home.” (John Zeisel, “I’m Still Here,” page 91)
MUSEUM TOUR: HOW TO - Day 2 – sketching what they saw
The tour ends with the participants are asked to sketch what they saw on a
white card attached to a small clipboard. (John Zeisel, “I’m Still Here,” page
88)
MUSEUM TOUR: HOW TO – Day 3 - Create
Back in their residence, make drawings of the art using colored pencils.
(John Zeisel, “I’m Still Here,” page 88)
MUSEUM TOUR: HOW TO - Day 4 – Show and Tell
Participants choose an object to show and share stories from their lives.
(John Zeisel, “I’m Still Here,” page 88)
MUSEUM TOUR: ELICIT RESPONSE – DO NOT OVERWHELM
Skilled educators know how to present art and to elicit participants’ response
and opinions to specific artworks. They know how to make everyone’s opinion
count. And to provide just enough information so that viewers feel they have learned
something without being overwhelmed.
(John Zeisel, “I’m Still Here,” page
90)
PEOPLE LIVING WITH ALZHEIMER’S UNDERSTAND VISUAL ART BY:
1. Perceiving and describing, talking about what they see in the
artwork
(John Zeisel, “I’m Still Here,” page
92)
PEOPLE LIVING WITH ALZHEIMER’S UNDERSTAND VISUAL ART BY:
2. Telling a story, narrating the story they see in the painting.
(John Zeisel, “I’m Still
Here,” page 92)
PEOPLE LIVING WITH ALZHEIMER’S UNDERSTAND VISUAL ART BY:
3. Linking it to their own lives, describing personal and historical memories.
(John Zeisel, “I’m Still
Here,” page 92)
PEOPLE LIVING WITH ALZHEIMER’S UNDERSTAND VISUAL ART BY:
4. Identifying the emotion, naming and expressing the emotions in
the artwork.
(John Zeisel, “I’m Still
Here,” page 92)
PEOPLE LIVING WITH ALZHEIMER’S UNDERSTAND VISUAL ART BY:
5. Identifying objects that make up the painting, seeing, naming
and describing the objects.
(John Zeisel, “I’m Still Here,” page 92)
PEOPLE LIVING WITH ALZHEIMER’S UNDERSTAND VISUAL ART BY:
6. Making critical judgments, commenting on moral issues raised in “risqué”
artwork.
(John Zeisel, “I’m Still
Here,” page 92)
INSPIRED QUESTIONS
Artworks from the “partly understood” paintings engage the curiosity of
participants and engender lively conversation when the exceptional guides point
out and explain characteristics of each painting and engage participants
through insightful questioning.
(John Zeisel, “I’m Still
Here,” page 92)
7 PAINTINGS ON TOURS
On the basis of its research, ARTZ recommended that seven paintings serve as
the focus of most tours.
(John Zeisel, “I’m Still Here,” page
93)
MUSEUM TOURS DO NOT JUST HAPPEN.
Museum tours do not just “happen,” and museums that do not follow
all the steps to guarantee that their tours will be Alzheimer’s competent, run
the risk of having a negative effect on people and their partners. Museum
educators must learn how to relate to people living with Alzheimer’s, helping
them feel comfortable, discussing artworks that resonate with them, followed by
critique. You can use these same
principles when you visit yourself with your partner.
(John Zeisel, “I’m Still Here,” page 95)
ARTZ COMMUNICATION PRINCIPLES: Scope out the building.
Map the building Plan how participants will get around the building.
(John Zeisel, “I’m Still Here,” page 95)
ARTZ COMMUNICATION PRINCIPLES: Set the stage.
Have name tags ready. Decide on first or last names in addressing participants.
Ask, “Would you like me to call you Mary or Mrs. Smith?”
(John Zeisel, “I’m Still Here,” page 96)
ARTZ COMMUNICATION PRINCIPLES:
Introduce yourself.
Wear your name tag. Point to your first name when you introduce yourself.
Identify yourself by name. Explain what your role is.
(John Zeisel, “I’m Still Here,” page 96)
ARTZ COMMUNICATION PRINCIPLES:
Employ friendly body language.
Stand in front of the person, to be least threatening. Hold their hand. Look
into their eyes. Smile.
(John Zeisel, “I’m Still Here,” page 96)
ARTZ COMMUNICATION PRINCIPLES:
Alleviate participants’ anxiety about where they are.
Answer their question, “Where are we?” without being asked. Repeat regularly:
“We are at the Central City Museum here in Minneapolis.”
(John Zeisel, “I’m Still Here,” page 96)
ARTZ COMMUNICATION PRINCIPLES:
Alleviate participants’ anxiety about why they are there.
Answer their questions without being asked. (Why are we here? What do they want
me to do? What if my wife is looking for me? When am I leaving?) Repeat as often as necessary: “We will be
looking at wonderful works of art. Your family and friends know you are here.
You will be here for one hour.
(John Zeisel, “I’m Still Here,” page 96)
ARTZ COMMUNICATION PRINCIPLES:
Involve each participant.
Frame the question: Related the question to something specific in the work.
“Why is that woman standing there?” NOT: “What does this represent to you?”
(John Zeisel, “I’m Still Here,” page 96)
ARTZ COMMUNICATION PRINCIPLES:
Avoid testing.
Don’t say: “Who painted this, do you know? Come on, this one is real easy!”
Instead, slowly reveal the work of art with simple descriptions and question,
thereby allowing participants to explore the artwork with you. In this way,
they maintain their dignity and sense of accomplishment.
(John Zeisel, “I’m Still Here,” page 96)
ARTZ COMMUNICATION PRINCIPLES: Make the experience positive.
Positive experiences lead to self-esteem and self-esteem lasts a long time as
an Alzheimer’s treatment, reducing agitation, aggression, and social
withdrawal. If you see someone getting anxious, change the subject.
(John Zeisel, “I’m Still Here,” page 97)
ARTZ COMMUNICATION PRINCIPLES: Positively reinforce.
When they “get it,” or get a painter’s name or anything about the artwork, be
positive without seeming surprised.
(John Zeisel, “I’m Still Here,” page 97)
ARTZ COMMUNICATION PRINCIPLES:
Make everything failure free.
The entire experience is supposed to be failure free – to touch their amygdala,
the emotion center of the brain – positively. Don’t ask participants to compare
paintings they saw half an hour earlier with the one they are looking at.
(John Zeisel, “I’m Still Here,” page 97)
ART MUSEUM TOUR: How much do you teach?
How much do they encourage the participants to express what they see and feel
about the art? A shift was necessary in this type of tour from primarily
teaching and convincing to enabling the people and viewers to look and express
themselves.
(John Zeisel, “I’m Still Here,” page 98)
LIST OF ARTWORKS
The following artworks and objects were identified as increasing participants’
focus of attention, engagement, and self-confidence.
(John Zeisel, “I’m Still Here,” page 99)
ARTWORKS
The Card Sharp, Georges de la Tour, 1633-1639
(John Zeisel, “I’m Still Here,” page 99)
ARTWORKS
Charity, Jacques Blanchard, 1633
(John Zeisel, “I’m Still Here,” page 99)
ARTWORKS
Cardinal Richelieu, Philippe de Champaigne, 1639
(John Zeisel, “I’m Still Here,” page 99)
ARTWORKS
Peasant family, Le Nain brothers, 1640
(John Zeisel, “I’m Still Here,” page 99)
ARTWORKS
Peasants’ meal, Le Nain brothers, 1642
(John Zeisel, “I’m Still Here,” page 99)
ARTWORKS
Christina’s World, Andrew Wyeth, 1948
(John Zeisel, “I’m Still Here,” page 100)
ARTWORKS
Agrarian Leader Zapata, Diego Rivera, 1931
(John Zeisel, “I’m Still Here,” page 100)
ARTWORKS
The Sleeping Gypsy, Henri Rousseau, 1897
(John Zeisel, “I’m Still Here,” page 100)
ARTWORKS
La Goulue at the Moulin Rouge, Henri de Toulouse-Lautrec,
1891-1892
(John Zeisel, “I’m Still Here,” page 100)
ARTWORKS
Girl with Ball, Roy Lichtenstein, 1961
(John Zeisel, “I’m Still Here,” page 100)
ARTWORKS
Portrait of George Crowninshield, Jr. attributed to Samuel F. B.
Morse, 1816
(John Zeisel, “I’m Still Here,” page 100)
ARTWORKS
Queen Elizabeth I, large-scale model, Basset-Lowke Ltd, 1949
(John Zeisel, “I’m Still Here,” page 100)
ARTWORKS
Miss H., Douglas Volk, 1880
(John Zeisel, “I’m Still Here,” page 100)
ARTWORKS
Waves, Yuko Nishimura, 2008
(John Zeisel, “I’m Still Here,” page 100)
ARTWORKS
Radio Man, Gina Kamentsky, 2006
(John Zeisel, “I’m Still Here,” page 100)
ARTWORKS
Sunflowers for Vincent, Mark di Suvero, 1978-1983
(John Zeisel, “I’m Still Here,” page 101)
ARTWORKS
Listening Stone, Joseph Wheelwright, 1995
(John Zeisel, “I’m Still Here,” page 101)
ARTWORKS
Requiem to the 20th Century, 1936, Chrysler Air Stream,
Nam June Paik, 1997
(John Zeisel, “I’m Still Here,” page 101)
ARTWORKS
The Musical Fence, Paul Matisse, 1980
(John Zeisel, “I’m Still Here,” page 101)
ARTWORKS
The Flapper, Margarte Preston, 1925
(John Zeisel, “I’m Still Here,” page 101)
ARTWORKS
The Dover’s Wife, Russell Drysdale, 1945
(John Zeisel, “I’m Still Here,” page 101)
ARTWORKS
The Landing of the Pilgrim Fathers in America, A.D. 1620, Charles
Lucy, 1868
(John Zeisel, “I’m Still Here,” page 101)
ARTWORKS
Benjamin Franklin, Joseph Wright, 1782
(John Zeisel, “I’m Still Here,” page 101)
ARTWORKS
George Washington, Rembrandt Peale, 1847
(John Zeisel, “I’m Still Here,” page 101)
ARTWORKS
Sunday Stroll, Robert Dickerson, 1960
(couldn’t find an image)
(John Zeisel, “I’m Still Here,” page 101)
ARTWORKS
Interior in Yellow, Grace Cossington Smith, 1962, 1964
(John Zeisel, “I’m Still Here,” page 101)
NATIONAL HERITAGE DISPLAY
Raggedy Ann doll, 1939-1949
Baseball glove, Draper-Maynard Co., 1920-1925
(John Zeisel, “I’m Still
Here,” page 101)
NATURAL HISTORY MUSEUM
Whale skeleton
Gorillas
Hippopotamus fossil
Glass flowers
(John Zeisel, “I’m Still Here,” page 100)
DO IT YOURSELF MUSEUM TOUR
Find out what artworks are on display at the museum you choose. Ask the museum
if there is a special day of the week or time of day during which the museum is
quieter than usual. If you think she will get tired and need a folding chair
during the tour, arrange this with the museum beforehand. At home, show a dozen
images of the artworks on display that you think your mother might enjoy. Ask
her to choose the ones she likes best and ask why. Take notes. At the museum,
stop in front of each artwork and ask her again what she feels, likes, and
dislikes about each one. Prompt her with the notes you took from the earlier
conversation.
(John Zeisel, “I’m Still Here,” page 104)
FLOOD GATES OF MEMORY OPEN
“As soon as we hear a song that we haven’t heard since a particular time in our lives, the flood gates
of memory open and we’re immerse in memories… a key unlocking all the
experiences associated with the memory for the song, it’s time and place.” –
Daniel J. Levitin
(John Zeisel, “I’m Still Here,” page 105)
The Dramatic Arts: music, poetry, theater, films and the circus
Dramatic Arts different from the visual arts because they touch multiple sense
and thus different types of memories. They surround with sound, sights, and
proprioceptive body experiences. It’s harder to look away.
(John Zeisel, “I’m Still Here,” page 105)
RHYTHM
The rhythm and the beat of music are as engaging as the song. Why does her
father like listening to reggae music so much, which he never heard before?
Rhythm and beat contain their own messages. (John Zeisel, “I’m Still Here,”
page 105)
WATCH OR CREATE
Listen to music or create it. Attend the circus or put on a clown’s face and
clown around yourself. Watch a play or write and act in one. Each engagement
brings with it special challenges and joys. Each draws on unique brain
abilities. Each can be part of your relationship building.
(John Zeisel, “I’m Still Here,” page 106)
THEATER: ATTENTION
Drama grabs the attention of people living with Alzheimer’s both when they are
part of a theater audience and when they are acting in plays. Drama coveys
feelings and ideas more forcefully than any formal lecture presentation can.
(John Zeisel, “I’m Still Here,” page 106)
PERSONAL STATEMENTS
One of the actors in that performance expresses eloquently that he is very much
still alive and engaged in life: “I still get excited about politics. I am
concerned about the war in Iraq and hurricane Katrina and what’s happening in
Washington and Staten Island. I do have an opinion about President Bush. I do
worry about the future of our country and our world. I also worry about my
future.”
(John Zeisel, “I’m Still Here,” page 109)
PERSONAL STATEMENTS
Above all, I want to tell you: Don’t avoid us! Don’t forget us! Don’t abandon
us! The stigma of this illness stands in the way of all of us being part of
society with respect and dignity. My name is Jim. I am a husband. I am a
father. And I am a person living with Alzheimer’s.”
(John Zeisel, “I’m Still Here,” page 110)
POETRY
Poetry is an art form that also turns on parts of the brain that mere words do
not. Both the reading and writing of poetry cuts across the brain’s
dysfunctions, enabling people living with Alzheimer’s to engage fully – it
touches parts of the brain that song also activities.
(John Zeisel, “I’m Still Here,” page 111)
ARTZ LIST OF POEMS
(John Zeisel, “I’m Still Here,” page 115-116)
List of Poems that Grab the attentions of participants with Alzheimer’s
Sonnet 18, William Shakespeare, 1609
The Tyger, William Blake, 1794
The Daffodils, William Wordsworth, 1804
How Do I Love Thee? Sonnet 43, Elizabeth Barrett Browning, 1845
The Arrow and the Song, Henry Wadsworth Longfellow, 1845
The Owl and the Pussycat, Edward Lear, 1871
I Hear America Singing, Walt Whitman, 1860
I’m Nobody! Emily Dickinson, 1870
The New Colossus, Emma Lazarus, 1883
Wynken, Blynken, and Nod, Eugene Field, 1889
The Road Not Taken, Robert Frost, 1916
Stopping by Woods on a Snowy Evening, Robert Frost
Sea-Fever, John Masefield, 1902
The House with Nobody in It, Joyce Kilmer, 1914
DO-IT-YOURSELF POETRY
You can write poetry with an individual living with Alzheimer’s or with a
group. Poetry writing enables the person living with Alzheimer’s and their
partner the opportunity to express insights and to creatively use words.
(John Zeisel, “I’m Still Here,” page 117)
FIRST RULE FOR POETRY WRITING:
Keep quiet and listen intently. It is too easy to fill a silence with your own
chatter. Instead, give the person time to gather thoughts and feeling san give
her all the time she needs to find the right words.
(John Zeisel, “I’m Still Here,” page 118)
ASK PERMISSION
Ask permission to write down or tape-record their words. Never transcribe what
a person says without the common courtesy of asking permission.
(John Zeisel, “I’m Still Here,” page 118)
AVOID SUGGESTING A SUBJECT
You are there to record, not direct. Stop when they seem to have had their say
or too tired. Tell the person you will bring a typed version of what they have
said next time.
(John Zeisel, “I’m Still Here,” page 118)
STRIP AWAY, BUT DON’T ADD
Search for rhythm, repetition, emotional phrases, metaphors. Rhyme is the least
likely characteristic, except occasionally by accident. Strip away irrelevant
or unhelpful elements. At no point add anything. Every word must come from the
person.
(John Zeisel, “I’m Still Here,” page 118)
REVIEW AND REVISE
Bring the poem back to the person. Read it. (At this point you could ask
inspired questions, guiding them to add anything else that comes to mind, and
see if anything should be added.) Ask permission to share.
(John Zeisel, “I’m Still Here,” page 119)
STORYTELLING PURPOSE
Partners can create stories together as a way of developing relationship. These
art experiences focus on the person’s abilities, they are essentially ways for
two or more people to relate to each other, and they bring joy and fulfillment.
(John Zeisel, “I’m Still Here,” page 120-121)
STORYTELLING: FANTASTIC PHOTO
Pass around a unique and surprising photograph – a baby sitting in an old
leather doctor’s bad, a woman in a long dress aiming a rifle along railroad
tracks, a mountain climber leaping, almost flying, between boulders over a deep
ravine. Using a fantastic, slightly unreal photo, instead of natural snapshots,
enables the person to imagine a story without the risk of being “wrong” about
facts.
(John Zeisel, “I’m Still Here,” page 121)
STORYTELLING QUESTIONS
Draw on the ideas and words that the photograph brings to mind, enabling the
creation of entertaining and interesting stories. The facilitator asks
questions, honoring every answer. What name would you give this person? When do
you think this takes place? Where might she have come from? How long do you
think he has been doing this? Every answer is okay.
(John Zeisel, “I’m Still Here,” page 122)
MOVIE MEMORY LANE
ARTZ has identified a set of mostly Hollywood movies, musicals and television
scenes that seem to grab the attention of an audience of people living with
Alzheimer’s. They touch the emotions.
(John Zeisel, “I’m Still Here,” page 127)
ARTZ LIST OF TV/MOVIE SCENES
(John
Zeisel, “I’m Still Here,” page 128)
“Oh, What A Beautiful Mornin',”
Gordon MacRae, (Rodgers & Hammerstein's OKLAHOMA! 1955,)
“Somewhere Over The Rainbow,” Judy Garland, (Metro-Goldwyn-Mayer’s The Wizard
of Oz, 1939)
“If I Were a Rich Man,” Chaim Topol, (Norman Jewison’s Fiddler on the
Roof,1971)
"I am Dracula,” Bela Lugosi (Dracula, 1931)
“Let ‘em Roll!” The Chocolate Factory, Lucille Ball and Vivian Vance (I Love
Lucy, 1952) “Vitameatavegamin,” Lucille Ball, (I Love Lucy, 1951)
“A Plumbing We Will Go” (The Three Stooges, 1940)
“Singing in the Rain” Gene Kelly ( Singing in the Rain, 1952)
“Do Re Mi,” Julie Andrews (The Sound of Music, 1965)
“We'll Always Have Paris,” Humphrey Bogart and Ingrid Bergman (Casablanca,
1943)
“The Richest Man in Town” Jimmy Stewart, (It’s a Wonderful Life, 1946)
FROM ARTZ LIST OF TV/MOVIE SCENES
FROM ARTZ LIST OF TV/MOVIE SCENES
FROM ARTZ LIST OF TV/MOVIE SCENES
FROM ARTZ LIST OF TV/MOVIE SCENES
FROM ARTZ LIST OF TV/MOVIE SCENES
FROM ARTZ LIST OF TV/MOVIE SCENES
FROM ARTZ LIST OF TV/MOVIE SCENES
FROM ARTZ LIST OF TV/MOVIE SCENES
FROM ARTZ LIST OF TV/MOVIE SCENES
FROM ARTZ LIST OF TV/MOVIE SCENES
FROM ARTZ LIST OF TV/MOVIE SCENES
WHY WATCH MOVIE SCENES TOGETHER?
EMOTION: FEELING PRESENT AND ENABLED
The point is not to have THEM watch it, but to watch together and discuss it. The
most important feature of all these movie excerpts is the emotions each evokes:
joy, anxiety, fear, sadness, hope, humor, silliness, love, regret, and relief.
What is the effect to evoking emotions? The person feels present and enabled.
Partners make connections at a deep personal and familiar level.
(John
Zeisel, “I’m Still Here,” page 129)
INTRO MOVIE SCENES:
“The next clip you’re going to see if from one of the most tender and yet
saddest films I know, a real love story. What might that be? [Wait for an
answer.] It takes place in North Africa in World War II, in a city with a
casbah. One of the famous lines from the movie is: “Play it, Sam.” The movie
stars one of the most famous actors of all times, Humphrey Bogart, “Bogey,” and
one of the most beautiful, Ingrid Bergman. [They may guess the movie before all
the cues are given.]
(John
Zeisel, “I’m Still Here,” page 129)
QUESTIONS AFTER MOVIE SCENE
Isn’t that the saddest scene? It’s also very tender and loving. Have you ever
been in love like that? Have you ever had to leave a loved one behind? Many
people lived during World War II. Did you know someone that lived through the
war? Were you in the army or did you know someone that was?
(John
Zeisel, “I’m Still Here,” page 130)
DO IT YOURSELF MUSIC AND PERFORMANCE
(John Zeisel, “I’m Still Here,” page 131)
Why even take notes? It’s our life!
THE CIRCUS
Why does circus have the same effect as other art experiences? It feels
familiar to all of us. The noisy audience expresses its feelings. Circus people
use their bodies to show off their skills, and use facial expressions. The
circus is fun. The sense of self people living with Alzheimer’s develop,
knowing that they are out and about in the city and taking part in life, enable
people to say, “I’m still here” and build relationships.
(John
Zeisel, “I’m Still Here,” page 134)
ENVIRONMENT CAN REDUCE SYMPTOMS
I had the exceptional opportunity to explore in depth the relationship among
sociology, architecture, interiors, landscape, and planning. If I could
discover how physical environment helps people in this extremely vulnerable
group find their way and access their memories, these same principles could be
used to create healthy environments of all sorts. In fact, the designed physical environment
can reduce Alzheimer’s symptoms.
(John Zeisel, “I’m Still Here,” page 137)
8 MAJOR CHARACTERISTICS CORRELATED WITH REDUCTION IN SYMPTOMS
1) Exit control, 2) walking paths, 3) privacy, 4) shared spaces, 5) gardens, 6)
home-like living, 7) five senses, 8) independence and empowerment.
(John Zeisel, “I’m Still Here,” pages 138-143)
REDUCTION IN SYMPTOMS: EXIT CONTROL
Safe and completely secure gardens with unobtrusively locking doors, windows,
fences, and other potential exits, camouflaged exits that lead to danger.
Oxytocin is released when people feel safe, contributing to lower stress and
greater trust.
(John Zeisel, “I’m Still Here,” pages 138)
REDUCTION IN SYMPTOMS: WALKING PATHS
Clearly understood and visible destinations. Landmarks where decisions must be
made, at corners or doorways. Music, smells of food and a hearth are excellent
landmarks.
(John Zeisel, “I’m Still Here,” pages 138)
REDUCTION IN SYMPTOMS: PRIVACY
surfaces on which mementos and other personal objects may be easily displayed.
All living creatures want some territory that is their own.
(John Zeisel, “I’m Still Here,” pages 139)
REDUCTION IN SYMPTOMS: SHARED SPACES
Decoration and furnishings that clearly differentiate one place from another
help promote appropriate behaviors in each room, telling us what is expected of
us.
(John Zeisel, “I’m Still Here,” pages 139)
REDUCTION IN SYMPTOMS: GARDENS
porches, patios, and gardens provide safe access to the out-of-doors. Early in
the progress of Alzheimer’s, people’s sense of time is disturbed. Physical
contact with nature (time of day, the weather, the passing seasons), help them
remain aware of time passing.
(John Zeisel, “I’m Still Here,” pages 140)
REDUCTION IN SYMPTOMS: HOMELIKE LIVING SPACE
Homelike bedrooms that are not too big, with familiar decor on the walls.
Territorial imperative, also linked to oxytocin, is centered at “home” for all
living creatures.
(John Zeisel, “I’m Still Here,” pages 141)
REDUCTION IN SYMPTOMS: THE FIVE SENSES
If the kitchen is intended to be the social hub, it should look feel, sound,
and smell like a social hub. If a garden is to be used frequently, it needs to
be inviting and visible through a window. Multiple sensory cues to understand
the environment, reduces agitation and psychotic symptoms.
(John Zeisel, “I’m Still Here,” pages 141)
REDUCTION IN SYMPTOMS: INDEPENDENCE AND EMPOWERMENT
Enable people to do by and for themselves, fostering independence as much as
possible. Have bathroom doors that are visible. High toilet seats, (making it
easier to sit down and get up), ensure more frequent independent use. Safe, secure gardens enable independent use.
A sense of control over our environment leads to a greater sense of
empowerment.
(John Zeisel, “I’m Still Here,” pages 142)
5 RULES OF COMMUNICATION
1) Hear and respond to the other person’s “reality.” 2) Be honest. 3) Always
address the person directly. 4) Don’t test! 5) Don’t say “don’t”; divert and
redirect instead.
(John
Zeisel, “I’m Still Here,” pages 155-163)
RULES OF COMMUNICATION: #1 Hear and respond to the other
person’s “reality.”
People
who live with Alzheimer’s may not know that the person they are talking to has
a different reality. It’s kinder and much more respect to understand and
respond to whatever reality the other expresses. Responding to the feelings
underlying what another is saying can reduce anxiety, agitation, and
aggression.
(John Zeisel, “I’m Still Here,” pages 156 )
RULES OF COMMUNICATION: #1 continued (understanding the
other person’s reality)
It
would be as if someone persistently tried to convince you that you are actually
a citizen of the moon, and refused to stop no matter how much you objected. At
some point your patience would wear thin. When others attempt to get someone to
change how they see the world, the reaction is predictable: anger, resistance,
and withdrawal.
(John Zeisel, “I’m Still Here,” pages 156 )
RULES OF COMMUNICATION: #1 continued (How do you respond to
others?)
An
upset friend complains “I’m having the worst day of my life.” You wouldn’t say: “No, not really. The worst
day was probably when your father died in a crash.” I would only upset your
friend more, getting more angry, anxious, and unhappy. This is the same effect
that correcting the reality of a person living with Alzheimer’s has on her.
(John Zeisel, “I’m Still Here,” pages 156
)
RULES OF COMMUNICATION: #2 Be honest.
Honesty means being yourself. Some people interpret honesty to mean expressing
every attitude and feeling they have, even telling the other person that they
are wrong, correcting the person each time you see things differently. A person
can correct in a non-confrontational and respectful manner by expressing her
own reality. To someone who thinks night is day, your truth could be presented
as: “I believe it’s the middle of the
night.” Others have their truth; you
have yours.
(John Zeisel, “I’m Still Here,” pages 157 )
RULES OF COMMUNICATION: #2 continued (empathy)
Honesty includes responding with empathy. It is not a lie to feel concern when
a person cries about being abandoned. She feels abandoned. Address the feeling
without correcting. Not telling someone that the husband she is waiting for
died is no more a lie than not correcting your spouse when she says it was the
worst day of her life.
(John
Zeisel, “I’m Still Here,” pages 158 )
RULES OF COMMUNICATION: #3 Always address the person
directly.
No one likes hearing people talking about them
as if they were not there. In every situation be sure to talk directly to the
person living with Alzheimer’s. The person knows she is there. It is up to
others to remember and recognize this always. Acknowledging the person by words
and actions reduces symptoms.
(John Zeisel, “I’m Still Here,” pages 158 )
RULES OF COMMUNICATION: #3 continued (Donald L. Coburn’s
“The Gin Game,” 1977)
HE:
I hate it when people say, “Are we hungry for dinner now?” When they mean, “Are you hungry?”
SHE: I feel even worse when they talk about me in the third person to someone
else, and I’m sitting right there. “Do you think she needs a bath?” they ask
another nurse.
(John Zeisel, “I’m Still Here,” pages 159
)
RULES OF COMMUNICATION: #3 continued (PBS documentary, “The
Forgetting,” 2004)
Professionals can get it wrong. In a PBS television special, on scene takes
place in a doctor’s office. The doctor is giving advice to an older couple in
which the wife is living with Alzheimer’s. Throughout the scene the doctor
addresses all his remarks to the husband, ignoring the wife’s presence, as if
she could not hear, understand, or were not there.
(John Zeisel, “I’m Still Here,” pages 159 )
http://www.pbs.org/program/forgetting/
RULES OF COMMUNICATION: #4 Don’t test!
Every
day we ask others for information and data because we don’t know the answer.
The term, “Can you” is a test question that always needs to be avoided. From
the very beginning of the illness, posing such questions feels increasingly
like a test of memory they are sure to fail. The person wishes he were the same
person he always was. We all wish he had the same access to memory, the same
recollections, the same skills.
(John Zeisel, “I’m Still Here,” pages 160 )
RULES OF COMMUNICATION: #4 continued (Our relationship and
their enjoyment)
Every time a person is tested, he is made aware again that he is losing a grip
on reality. He knows he ought to remember the child’s name, but he can’t. We
test to make OURSELVES feel better. We want to exist in the person’s mind.
Avoid testing for knowledge.
(John
Zeisel, “I’m Still Here,” pages 161 )
RULES OF COMMUNICATION: #4 continued (Give him the answers)
Give him the answers rather than asking questions. Adam could wear a name tag.
“Hi Mom, this is your grandson Adam who you always enjoy singing songs with.”
Such an introduction gives her all the information she needs to be socially
appropriate. This is a critical form of Alzheimer’s treatment that makes her
feel competent and in control.
(John
Zeisel, “I’m Still Here,” pages 161 )
RULES OF COMMUNICATION: #5 Don’t say “don’t”; divert and
redirect instead.
A person living with Alzheimer’s doing something silly, inappropriate, or
dangerous is not likely to realize the effects of his actions. “Don’t,” doesn’t
mean anything to a person who does not understand why he should not do
something. Explaining the reason may not help. It’s kinder and more effective
to change the subject (divert) so that the person focuses on something else,
and then to suggest another alternative (redirect).
(John Zeisel, “I’m Still Here,” pages 162 )
RULES OF COMMUNICATION: #5 continued (divert FIRST before
redirecting)
If someone asks you not to leave when you are headed for the door, you may get
annoyed. But if you are stopped by someone asking about your kid’s music
lessons, or are stopped by the clamor of pots being dropped in the kitchen and
then asked, there is less likelihood of being annoyed. Create a diversion first
before suggesting a more appropriate activity.
(John Zeisel, “I’m Still Here,” pages 163 )
CHANGING ME, NOT THE PERSON WITH ALZHEIMER’S
Communication is the building block of relationships; others building blocks
include understanding and embracing the other person for who they are. This section is about not changing the person
living with Alzheimer’s; it’s about changing and modifying the way you react so
you don’t make matters worse.
(John Zeisel, “I’m Still Here,” pages 164 )
THE 7 RULES OF RELATIONSHIP BUILDING
1) Respond, don’t react 2)
Be present 3) Do as little as possible to help the person to be successful 4) Use all the senses 5) Find the person’s doodling 6) The principle of “I” in the “we” 7) Follow the flow of the day.
(John Zeisel, “I’m Still Here,” pages 164-176 )
RELATIONSHIP BUILDING #1 Respond, don’t react: Responding is
treatment
When they get angry, you get defensive and angry back. When they repeat
themselves, you get frustrated and tell them stop. Thus they get more anxious,
agitated and aggressive. We don’t smash our car into every other care that cuts
into our lane; we think first. When we are small children, we react more than
we respond, as we become adults, we respond more and react less. Responding is
treatment.
(John Zeisel, “I’m Still Here,” page 164 )
RELATIONSHIP BUILDING #1 Respond, don’t react: Repeated questions
When the person asks the same question over and over, answer the question over
and over with no emotion, or impatience. Give the person a note with the answer
written clearly on it. Each time they ask, remind them to look at the note.
(John Zeisel, “I’m Still Here,” page 165 )
RELATIONSHIP BUILDING #1 Respond, don’t react: control yourself
When the person gets angry, control yourself and don’t get angry back. Don’t
escalate the anger. Each measured response contributes to reduced agitation and
aggression. Each measured response is treatment.
(John Zeisel, “I’m Still Here,” page 166 )
RELATIONSHIP BUILDING #2 Be present – are you ignoring her?
Pay attention. When you smile, frown, pay attention to what is being said, or
have your attention diverted – all these actions directly affect the
relationship. If you go out for ice cream with the person who has Alzheimer’s
it is likely they will react to: the strange environment, the menu choices,
little understood topics of conversation, interesting activity outside on the
street. She will look out the window, interrupt your conversation, and be
disruptive.
(John Zeisel, “I’m Still Here,” page 166 )
RELATIONSHIP BUILDING #2 Be present – focus on her
If you move to a simpler place and focus on her, she will focus back on you.
Their minds are not wandering. They are not thinking about something else to do
because you are there and you are what they are doing. If your mind wanders, so
will the person’s. Express tenderness, caring, and love.
(John Zeisel, “I’m Still Here,” page 167 )
RELATIONSHIP BUILDING #3 DO
LESS – let them do for themselves
(Do as little as possible to help the person be successful, but leave nothing
undone.)
The more we do for someone, the less they do for themselves. The more dependent
they grown on you, the less they learn how to get themselves out of trouble.
Often wanting to do the right thing, they say, “I’ll do it for you.” Don’t say
this. Do only what is needed.
(John Zeisel, “I’m Still Here,” page 168 )
RELATIONSHIP BUILDING #3 DO
LESS – fill in the blanks and organize the task for them
(Do as little as possible to help the person be successful, but leave nothing
undone.)
People living with Alzheimer’s slowly but surely need more help with dressing,
bathing, eating, grooming, walking, and so on. Fill in the blanks, organize the
steps, and help the person carry them out. The more you do, the faster they
learn helplessness. The less they do, the more you do, and the easier it is for
them to slip in to apathy.
(John Zeisel, “I’m Still Here,” page 168 )
RELATIONSHIP BUILDING #3 DO
LESS – allow their success
(Do as little as possible to help the person be successful, but leave nothing
undone.)
The more a person is self-sufficient, the more successful she feels. Success
breeds success in every activity. “Use it or lose it” holds true with Alzheimer’s.
The more the person controls the outcomes of his actions the longer these
skills last in his life.
(John Zeisel, “I’m Still Here,” page 169 )
RELATIONSHIP BUILDING #4
Use all the senses – encourage the experience
Don’t talk so much. The language centers are not working will. It is more
difficult for him to pay attention. Non-verbal cues can convey it is
dinnertime. Broadcast the smell of the chicken, the sound of dinner plays as
the table is set, activity in the kitchen, a taste of the soup for “testing.”
(John Zeisel, “I’m Still Here,” page 169 )
RELATIONSHIP BUILDING #4
Use all the senses – prepare before asking
A hug, a rub on the back, and a kiss always covey love better than words. If
you want to take a walk, put on your overcoat first and get hers out before
suggesting a walk. Use sounds, sight taste, sensations of warmth and cold to
communicate. If that does not work, use words.
(John Zeisel, “I’m Still Here,” page 170 )
RELATIONSHIP BUILDING #5
Find the person’s doodling (SKILLS)
By “doodling” I mean his own unique self-expression. It may be knitting,
playing the piano, reading aloud to others, painting, and working on a
computer. Each has his specialty. Find those skills that relaxes and soothes
him.
(John Zeisel, “I’m Still Here,” page 170 )
RELATIONSHIP BUILDING #5
Find the person’s doodling (a place with no Alzheimer’s)
Mary doesn’t have to think about how to bowl strikes when she bowls. She knows.
It’s second nature to her. Repeated years of practice embedded the know-how.
When Mary bowls, she is not confused, she fits in, and she enjoys herself;
there is no Alzheimer’s in the bowling alley for Mary.
(John Zeisel, “I’m Still Here,” page 171 )
RELATIONSHIP BUILDING #6 The principle of “I” in the “we” –
give them something to do
Everything we do is part of our definition of who we are. Jobs or social
positions develop a strong self-image, their sense of self. A significant part
of our spiritual and personal growth is to understand who we are in within a
greater collective whole – the “I” in the “we” and how we are connected.
(John Zeisel, “I’m Still Here,” page 173 )
RELATIONSHIP BUILDING #6 The principle of “I” in the “we” –
always call everyone by name
Instead of randomly tapping a balloon, they each had to catch a large ball.
When caught, they were congratulated by name with a “well done!” Everyone heard
their own name and recognized the others in the circle by name. Every social event can include these two
elements. Address each by name when sitting down to dinner. Introduce them to
their neighbor: “Do you want to sit next to your grandson Evan?”
(John Zeisel, “I’m Still Here,” page 174 )
RELATIONSHIP BUILDING #7 Follow the flow of the day. –
Provide things to do
A person living with Alzheimer’s who
enjoys doing things may find it burdensome to play a sequence of tasks to do to
keep herself busy all day long. Providing the person a daily flow of things to
do that engages her mind, body and spirit helps her live a more normal life.
(John Zeisel, “I’m Still Here,” page 175 )
RELATIONSHIP BUILDING #7 Follow the flow of the day. -
Morning energy
Our brains have a higher level of neurotransmitter acetylcholine in the morning
when we wake up, so we have a greater energy than when we go to sleep at the
end of the day.
(John Zeisel, “I’m Still Here,” page 175 )
RELATIONSHIP BUILDING #7 Follow the flow of the day. –
Mealtimes
Usually we are hungry three times a day – although this may be more cultural
than hard-wired. Meals are preceded by preparation and succeeded by cleaning
up. Preplanning and shopping are part of longer-term meal preparation.
(John Zeisel, “I’m Still Here,” page 175 )
RELATIONSHIP BUILDING #7 Follow the flow of the day. – social
contact
In our daily lives we have social contact with others – family, friends, those
with whom we have commercial interactions, and even strangers. Some of the
things we do require us to engage actively, to participate, whole we may engage
in other activities passively – watching and enjoying.
(John Zeisel, “I’m Still Here,” page 175 )
RELATIONSHIP BUILDING #7 Follow the flow of the day. –
different purposes
Some of the things we do for relaxation, exercise, to engage our aesthetic or
spiritual capacities. The day has more and less active times. In the evening we
get tired and go to sleep.
(John Zeisel, “I’m Still Here,” page 175 )
RELATIONSHIP BUILDING #7 Follow the flow of the day. – engage
The more of the day is natural, the more this treatment will engage him, keep
his attention, and reduce anxiety, agitation, aggression, and apathy.
(John Zeisel, “I’m Still Here,” page 176 )
APPRECIATING THE NEW RELATIONSHIP - Accepting the changes in a
loved one living with Alzheimer’s.
In a healthy parent-child relationship, each time one person goes through a
major life change, both have to develop a new relationship. Partners have a
choice to build a new and dynamic relationship with the person living with
Alzheimer’s or not. Many make the latter choice.
(John Zeisel, “I’m Still Here,” page 177 )
TRANSFORMATION WITH LIFE’S PASSAGES
I develop a new relationship with my children when each moved from being a
dependent child to an adult. In one sense, they remain my children; in another,
they have become adults to whom I must relate to as an adult. They had changed;
I had to change too. Each of life’s passages is a transformation we all
experience. We must face the shifts presented us just the same, whether happy
or less happy.
(John Zeisel, “I’m Still Here,” page 178)
HAPPY TRANSFORMATIONS
The child becomes an adult; I have a friend as well as a dependent. The child
has children; I am a grandparent. My colleague was promoted; I have a friend in
a position of influence.
(John Zeisel, “I’m Still Here,” page 178)
LESS JOYOUS TRANSFORMATIONS
Her son is addicted to heroin; she has to express her love in a different way.
The wife left him for another relationship; he has to establish a more distant
yet respectful relationship to her. My mother is getting old; I have to forget
the many slights of childhood and make peace.
(John Zeisel, “I’m Still Here,” page 178)
HOW WE RESPOND DETERMINES QUALITY OF LIFE AFTER TRANSITION
If we deny the changes and fight against them, we have a bad divorce, a bad
parent-child relationship, a bad relationship with our aging parents. If we
accept the changes, we have the opportunity build a new and fruitful
relationship that can enrich our lives.
(John Zeisel, “I’m Still Here,” page 179)
MAKE THE BEST OF THE CHANGE
We have the choice of making this change miserable for everyone; or we can make
the best of it. We can do even better – we can improve all our lives. We all
need friends with whom we can build a relationship. The person you used to love
is turning into a new person whom you can embrace and enjoy. All happy change
is tinged with sadness; all sad changes are tinged with joy. Continue to see
the good as well as the bad as the disease and relationship continues to
change.
(John Zeisel, “I’m Still Here,” page 179)
REPLACE UNREAL IMAGE WITH REALITY
It is incredible difficult to give up the person we love and that has shared
many of life’s other passages, and who we expected to enjoy later in life, but
you don’t have to. The person living with Alzheimer’s still has many of the
experiences and characteristics that have made her who she has always been. She
just can’t draw on these life experiences and express them in the same way.
Instead give up the unreal image, the future you dreamed of having, the fairy
tale stories. Replace them with new reality-based dreams.
(John Zeisel, “I’m Still Here,” page 180)
ACCEPTANCE FEELS LIKE LOVE
Bill Keane, on the board of the National Alzheimer’s Association, tells a story
of his mother falling ill with Alzheimer’s. He visited her daily, bringing her
favorite things, a hug, and a smile. Bill’s father felt his life was over when
he realized she had Alzheimer’s and never accepted her for the person she had
become. Somehow she knew this. A major reason for accepting and even embracing
the changes is that the person you love will know that you continue to love
them.
(John Zeisel, “I’m Still Here,” page 182)
NEW RELATIONSHIP GOAL: To discover the uniqueness of the person
living with Alzheimer’s.(John Zeisel, “I’m Still Here,” page 183)
BEGINNING A NEW RELATIONSHIP: 1. Keep a written log
(John Zeisel, “I’m Still Here,” page 183)
BEGINNING A NEW RELATIONSHIP: 2. Take notes
(John Zeisel, “I’m Still Here,” page 183)
BEGINNING A NEW RELATIONSHIP: 3. Record actual behavioral
observations.
(John Zeisel, “I’m Still Here,” page 183)
BEGINNING A NEW RELATIONSHIP: 4. Write down “quotations” to which
you might want to refer later.
(John Zeisel, “I’m Still Here,” page 183)
BEGINNING A NEW RELATIONSHIP: 5. Note the time of day and day of
the week.
(John Zeisel, “I’m Still Here,” page 183)
BEGINNING A NEW RELATIONSHIP: 6. Describe the physical environment
and social context of each observation.
(John Zeisel, “I’m Still Here,” page 183)
BEGINNING A NEW RELATIONSHIP: 7. Take digital photos of
activities, interactions, and physical context.
(John Zeisel, “I’m Still Here,” page 183)
THEIR NEW SKILLS
Staying present to the person enables discovery of present skills and aptitudes,
not only those he USED to have and you WISH he still had. While the person you
used to know was exceptional at multitasking, the new person is better at
focusing.
(John Zeisel, “I’m Still Here,” page 184)
WHAT MAKES HER HAPPY?
You will discover what makes her happy, that she loves holding hands, walking
in gardens, shopping, pets, children, and old movies.
(John Zeisel, “I’m Still Here,” page 184)
WHAT MAKES HER SAD?
He’ll remember his wife passed away, or thinking of lost friends, or when you
leave after visiting. Based on your observations, you can build your new
relationship.
(John Zeisel, “I’m Still Here,” page 184)
CREATING A POSITIVE
RELATIONSHIP: How to say hello
Sit down next to her, hold her hand, look her in the eye and say, “Hi, Mom. I’m
you daughter Miriam, and I love talking with you about Oakland, where you were
born.” Don’t just say, “Hi, Mom.” As you used to.
(John Zeisel, “I’m Still Here,” page 185)
CREATING A POSITIVE
RELATIONSHIP: Topics of conversation
Tell him about your day, and discuss what you know of his day. Talk about
sports, politics, family, his past, your past together, the job he used to
have, or just any subject that comes to mind. Don’t sit quietly waiting for a
topic of conversation to arise. It won’t.
(John Zeisel, “I’m Still Here,” page 185)
CREATING A POSITIVE
RELATIONSHIP: The rhythm of visits
Start each visit excitedly talking about the things you did that day and slowly
turn down the energy level until she walks you to the door. Or calmly chat the
entire time you’re there and then divert her attention to something else when
you quietly slip away. Don’t expect her to dictate the rhythm of the encounter.
(John Zeisel, “I’m Still Here,” page 185)
CREATING A POSITIVE
RELATIONSHIP: The images you bring to communicate with him.
Bring photos, trophies from your childhood, news clippings from significant
events in his life, a video of the family saying hello, or that day’s newspaper
to tell him about the world.
(John Zeisel, “I’m Still Here,” page 185)
CREATING A POSITIVE
RELATIONSHIP: The props with which you surround the person.
Make sure there are familiar paintings on the wall and discuss them with you’re
with him. Make sure he has a bedspread he knows is his. It is a memory jogger.
Don’t buy new things to make him feel good as it might you.
(John Zeisel, “I’m Still Here,” page 185)
CREATING A POSITIVE
RELATIONSHIP: Arranging the room.
Simplify the kitchen so it is least confusing. Move the coffee table in the
living room and put her favorite chair directly opposite window so that she
does not bump her knees.
(John Zeisel, “I’m Still Here,” page 186)
CREATING A POSITIVE
RELATIONSHIP: Things you do together.
Create opportunities to do things together. Don’t wait for them to arise on
their own. Take the initiative to walk in the garden together or down the
street. Take the initiative to drive to an ice cream shop and share an ice
cream cone. Go out to dinner.
(John Zeisel, “I’m Still Here,” page 186)
CREATING A POSITIVE
RELATIONSHIP: Cultural events
Go regularly to the museum he was a member of. Buy tickets to the opera for him
and you. What about the circus? Would he enjoy that? If you think he might, get
tickets and have a good time. What about visiting the local historical society
with pictures of the town when he was young?
(John Zeisel, “I’m Still Here,” page 186)
CREATING A POSITIVE
RELATIONSHIP: Sequence of things you do together
Decide how you are going to spend your time together. Don’t leave it to chance.
Plan a sequence, such a sitting together, going out, driving around, stopping
for a snack, returning home. Get his coat on the right away, go out, and then
sit for a while when you get back before you leave. Don’t expect things to just
happen by themselves.
(John Zeisel, “I’m Still Here,” page 186)
CREATING A POSITIVE
RELATIONSHIP: The way to say good-bye
Decide if you are going to explain to her when you leave where you are going
when you will be back. If so, describe these events simply. In a group setting,
when you are going to leave, make sure she is involved in another activity with
someone else before leaving. If you find this works well, time your leaving to
coincide with something else going on that will interest her, then, if it makes
you comfortable, prepare what you are going to take with you. Pick it up and
offhandedly say, “Bye, Mom,” as you are at the door.
(John Zeisel, “I’m Still Here,” page 187)
CREATING A POSITIVE
RELATIONSHIP: Leaving a record of you visit. Decide what sort of trace
you will leave of your visit. Every time you come to see her, write your name,
the date and time, and a note about what you did together. If that feels too
formal, place a large calendar on the wall and sign it each time you see her.
(John Zeisel, “I’m Still Here,” page 187)
CREATING A POSITIVE
RELATIONSHIP: Leaving a record of you visit. Decide what sort of trace
you will leave of you visit. Every time you come to see her, write your name,
the date and time, and a note about what you did together. If that feels too
formal, place a large calendar on the wall and sign it each time you see her.
(John Zeisel, “I’m Still Here,” page 187)
DISCLAIMER OF CREATING A POSITIVE RELATIONSHIP: While some of
these principles apply to all partners, each needs to be practiced differently
by family members.
(John Zeisel, “I’m Still Here,” page 187)
A TWO WAY STREET: WHAT YOU SAY AND DO HELPS THEM FIND EMOTIONAL
RESPONSE
A person living with Alzheimer’s actually does need other people. The more
sensitive to emotional expressions YOU show, the more responsive he will be to
other people’s needs. A person with Alzheimer’s can find she needs to give as
well, to figure out how to make you feel better, express empathy, and tell you
how much she loves you. She is responding with the hardwired part of her brain
where a need to care for others is embedded.
(John Zeisel, “I’m Still Here,” page 189)
PROVIDE MEANING: Amygdala emotions
Be sure to ask the person with Alzheimer’s for expressions of emotions rather
than cognitive data. Ask how they feel about a topic, not who was there a
little while ago, or someone’s name.
(John Zeisel, “I’m Still Here,” page 190)
PROVIDE MEANING: Memory joggers
In conversation, bring up all the topics you have identified as jogging her
memory. These may include a particular aspect of her life – her neighborhood or
her job, her children or grandchildren, or particular life events. Whatever you
do to trigger her access to memories plays a part in her treatment.
(John Zeisel, “I’m Still Here,” page 190)
PROVIDE MEANING: Visual props
Photographs you share, mementos of special events, graduation certificates,
military medals, a local team’s baseball hat, anything three-dimensional that
has meaning and that you can employ to generate interest or conversation is
part of his treatment. Don’t worry if there is a sad reaction to some of this.
Enabling him to be present to his own memories and emotions is the gift and the
goal.
(John Zeisel, “I’m Still Here,” page 190)
PROVIDE MEANING: Be the conversation generator yourself
Be prepared to talk about your day, the kids, your work the way you feel about
a movie you saw, a trip you took recently. Don’t expect the other person to
draw on his memory bank of topics and recent experiences to generate
conversation. If you have to carry the conversation as a monologue, carry it.
To do this you may need to make and refer to a written list of topics you are
going to cover, like a cue card.
(John Zeisel, “I’m Still Here,” page 191)
PROVIDE MEANING: ONE AT A TIME
A person who tries to implement all of the suggestions in this book might well
collapse from exhaustion. To do everything oneself to maintain a relationship
and provide meaning to another’s life would take more time than there is in a
day, and more energy that anyone has. It is essential, therefore to take the
things-to-do suggestions one at a time, and even to think of getting others to
help carry them out.
(John Zeisel, “I’m Still Here,” page 191)
CAREGIVING:
Life cannot be the sole responsibility of a single person. There is literally
never any real rest. See the parallel between the destruction of the liver or
heart, and the destruction of the brain.
Alzheimer’s is an organic illness of the brain. Sharing care tasks is
keeping a promise, not breaking it.
(John Zeisel, “I’m Still Here,” page 192)
CARE OF YOURSELF
Those who care of people living with Alzheimer’s tend not to take care of
themselves. They tend to get sick more
often and for longer periods than the people they care for. If the partner of
someone living with Alzheimer’s gets sick, the person living with Alzheimer’s
suffers.
(John Zeisel, “I’m Still Here,” page 209)
WHEN THINGS GET DIFFICULT:
Live within your own capabilities and limits; Don’t push the limits as far as
they can go; Establish your own life and rhythm; Establish a lifeline or two;
Learn to say: “Please help me;” Learn to give up.
(John Zeisel, “I’m Still Here,” page 211)
WHEN THINGS GET DIFFICULT: Live within your own capabilities and
limits
How much can you endure/ Determine how much care giving and treatment a partner
can take on. Your health depends on living within the limits of you capability.
If we don’t, the person we are caring for suffers as well.
(John Zeisel, “I’m Still Here,” page 211)
WHEN THINGS GET DIFFICULT: Don’t push the limits as far as they
can go
The measure of when to get help or attend a support group is when it is best
for the relationship – which means when it is best for both the person with
Alzheimer’s and the partners. “It’s not bad enough yet” = enduring discomfort,
suffering, pain instead of a healthy, compassionate relationship.
(John Zeisel, “I’m Still Here,” page 211)
WHEN THINGS GET DIFFICULT: Establish your own life and rhythm
The person with Alzheimer’s will have a new life and become a new person.
Establish your own new life; it is the only way to stay healthy. Decide on a schedule to be with her, (schedule
whether to have afternoons, or mornings, or evenings for yourself). Develop new skills, hobbies, pleasures,
trips, and friends.
(John Zeisel, “I’m Still Here,” page 212)
WHEN THINGS GET DIFFICULT: Establish a lifeline or two
It becomes more trying as the disease progresses. There will be times when you
will despair. You need to have friends or professional helpers who are
lifelines you can rely on. Find someone to whom can you vent? Find a formal support group of people dealing
with similar issues.
(John Zeisel, “I’m Still Here,” page 213)
WHEN THINGS GET DIFFICULT: Learn to say: “Please help me”
One of the gifts of Alzheimer’s is that the act of caring for another teaches
us to be aware of our own limits. We need others; they need us. Learn to say,
“Please help me.”
(John Zeisel, “I’m Still Here,” page 214)
WHEN THINGS GET DIFFICULT: Learn to give up
You have to learn to do what you can and learn to give up and drop it when the
task is overwhelming.
Know yourself well enough to do what you can, accept what you can’t and avoid
deceiving yourself into believing that you can achieve the impossible.
(John Zeisel, “I’m Still Here,” page 215)
THE GIFTS OF ALZHEIMER’S - Insights gained from learning to give
and receive.
“Feelings form the base for what humans have described for millennia as the
human soul or spirit.” – Antonio R. Damasio.
More can be positive in a life with Alzheimer’s. Relationships foster
and unwrap gifts; we learn a great deal about them and ourselves.
(John Zeisel, “I’m Still Here,” page 216)
THE FALSE IMAGE FOR FUNDRAISING
The term, “Alzheimer’s bring to mind for many a false image of a sick, old,
bedridden person whose mind wanders, who forgets the names of friends and
family, and who is rapidly becoming a nonperson. This extreme mental picture
develops because the media frequently presents this image and because those how
fund-raise for cure research find that such an image stirs people’s hearts – as
well as their pocketbooks.
(John Zeisel, “I’m Still Here,” page 216)
ENGAGING CAN AWAKEN
The picture of them attending a concert, enjoying a museum, does not pull on
the heartstrings of potential donors. People with Alzheimer’s live most of
their lives with bodies at least as healthy as those of others their age – and
minds that work, although stressed more by everyday situations than true for
many others. This book has described how engaging people living with
Alzheimer’s can awake them and their partners.
(John Zeisel, “I’m Still Here,” page 217)
THROUGH FATHER’S EYES
After Ellen’s mother died, when she was only seven, he became distant and paid
more attention to his work. “I would
never have said we were close – until he got Alzheimer’s.” He showed wonder,
surprise, and pleasure whenever he saw her and was extremely kind, sharing his
food when she visited. Many parents and children never achieve this.
(John Zeisel, “I’m Still Here,” page 218)
HOW HAVE I IMPROVED?
No one embraces the disease saying, “I am so happy my wife is living with
Alzheimer’s.” All say that if there were a way to return to the time before
Alzheimer’s they would jump at the chance. But there isn’t. The way each of us
has “improved” as human beings as a result of the relationship we have built
with our loved one’s over time. These are the gifts we receive.
(John Zeisel, “I’m Still Here,” page 219)
WORKING WITH ALZHEIMER’S PATIENTS LED TO PROFOUND RELATIONSHIPS.
I used to be angrier. Angry that my kids were not with me, I took it out on my
family. I was impatient, seldom present to what others were experiencing. I
pushed the limits of every relationship. As I increasingly spent time with
people living with Alzheimer’s, I realized that anger and impatience worked
against me. I was led to more profound friendships and relationship than when I
thought I was the center of the world.
(John Zeisel, “I’m Still Here,” page 219)
THE GIFT OF EMOTIONAL OPENNESS
My mother is exquisitely open emotionally to me and to those around her. I am
learning form her to be more open and loving myself.
(John Zeisel, “I’m Still Here,” page 220)
THE GIFT OF CHERISHING MEMORIES
With gentle reminders, my father recalls many memories of childhood, family,
and friends. These seem timeless and appear not to be fading. The more I am
with him the more I cherish these things in my own life.
(John Zeisel, “I’m Still Here,” page 221)
THE GIFT OF A SENSE OF HUMOR
I have to laugh sometimes at the things that happen and at the things she says.
Now I can laugh at situation in the rest of my life that otherwise used to
drive me up the wall.
(John Zeisel, “I’m Still Here,” page 221)
THE GIFT OF ACCEPTING HELP
I always thought I had to do everything myself, that I had to do all the
caring. Now I can accept the help of others more. It is a blessing to be
relieved of all the pressure I felt.
(John Zeisel, “I’m Still Here,” page 221)
THE GIFT OF TAKING CARE OF MYSELF
I always thought I needed to do everything for everybody. Now I realize that if
I don’t take care of myself, I won’t be able to help my mother.
(John Zeisel, “I’m Still Here,” page 221)
THE GIFT OF RECOGNIZING THE IMPORTANCE OF HOME AND HEARTH
The more I get to know him again and realize the importance of his home to him,
the more I value the friendliness of others, of sharing food, of having a place
of my own.
(John Zeisel, “I’m Still Here,” page 221)
THE GIFT OF LIFE STORIES
My mother has an active imagination and deep memories of places and times from
her past. She loves an appreciative audience. I hone my skills at storytelling
the more I realize that this is a skill that will continually increase
throughout my life.
(John Zeisel, “I’m Still Here,” page 222)
THE GIFT OF PATIENCE
Whenever I try to speed things up when I am with my father I become aware that
life has its own pace and that there is little I can do to speed it up or slow
it down. He just tells me bluntly to relax. Every time I am with my father, I
develop more patience and understanding.
(John Zeisel, “I’m Still Here,” page 222)
THE GIFT OF ENJOYING THE MOMENT
My mother is perpetually in the moment. Whenever we are together, I am given
the cherished gift of being there with her at that moment. Any regrets about
the past I might have, or hopes and fears about the future, have little place
in our relationship at that moment.
(John Zeisel, “I’m Still Here,” page 222)
THE GIFT OF SELF-AWARENESS
Every expression and every movement of mind counts when I am with my mother and
her friends. The notice everything around them and are exquisitely sensitive to
nuance and detail. I have learned from her how important everything I do is to
others.
(John Zeisel, “I’m Still Here,” page 222)
THE GIFT OF SEEING OTHERS FOR WHO THEY ARE
While they may still have certain skills or even money, those achievements and
possessions pale in the light of who they are. Their smiles, their tenderness,
their sensibilities – their basic human instincts become the person I relate to
– not their possessions.
(John Zeisel, “I’m Still Here,” page 223)
THE GIFT OF DISAPPEARING PROBLEMS
My mother gets upset when she senses others are coping with unresolved
problems. Whenever I drive to see my mother, I prepare myself by emptying my
mind of daily problems, no matter how immediate they may be. This is a skill I
have only mastered since Mom has been living with Alzheimer’s. Now I do the
same things with my friends and family.
(John Zeisel, “I’m Still Here,” page 223)
THE GIFT OF THE IMPORTANCE OF FAMILY
Even though I am only thirty years old, contact with my friend living with
Alzheimer’s has made me realize how fragile and transitory life is. I cherish
the time I spend with my parents – no matter how difficult those relationship
might be.
(John Zeisel, “I’m Still Here,” page 223)
THE GIFT OF REALIZING THAT PLATO WAS RIGHT
Plato describes life as a cave at the center of which is a fire that casts
shadows on the wall of people chained there. Reality is different to everyone
because each person sees different shadows on the wall. People didn’t see
either the fire or themselves, only ever changing shadows. Reality is like
that. My father sees the shadows one way, and I see them another. And we’re
both right.
(John Zeisel, “I’m Still Here,” page 224)
THE GIFT OF BEING PREPARED
I never knew how much being prepared could help others and could help me. When
Mom first started living with Alzheimer’s, I had trouble helping her get
dressed. Last week I had all her clothes laid out for her before she came into
the room. It was a lot easier this time. It’s a lesson for life.
(John Zeisel, “I’m Still Here,” page 224)
THE GIFT OF KNOWING MY WORK IS GOOD WORK
When I massage these clients, they have a big smiles. I give them the gift of
touch; in return they give me the gift of value.
(John Zeisel, “I’m Still Here,” page 224)
THE GIFT OF GOING WITH THE FLOW
When my husband I learned how just to be appropriate and to say the right
thing. I learned I can only do what I can do – no more. So what if I can’t go
to a show or an event I wanted to attend. I greet each morning without plans. I
just go with the flow. Something I’ve never before been able to do.
(John Zeisel, “I’m Still Here,” page 225)
THE GIFT OF COPING WITH THE COMPLICATED
Nothing is simple with Alzheimer’s. It’s all just complicated. I’ve learned
over time that I can handle it. I can handle all sorts of complicated things in
the rest of my life too that I hadn’t been able to handle. (John Zeisel, “I’m Still Here,” page 225)
THE GIFT OF KEEPING GOING
When my husband was diagnosed a few years ago, I decided we’re just going to
keep going. Last month we took a boat ride to Nova Scotia. We play golf each
week. We’ve been happily married for forty-two years. Every day I just try to
make life as happy as it has always been – and it works.
(John Zeisel, “I’m Still Here,” page 225)
THE GIFT OF GREATER INSIGHT
Alzheimer’s has opened a window into a part of my mother that was mostly
guarded in the past. Now she is able for the first time to show the more
affectionate part of her nature. There is less conflict between us now. I have
become more open not only to her but to my family and friends as well.
(John Zeisel, “I’m Still Here,” page 225)
THE GIFT OF GIVING
It was always hard to please my father – no matter how hard I tried. Now he has
‘the smile of the moment that means everything.’ Now I always know when he is
happy with something I have done for him and I am able to give more freely of
myself.
(John Zeisel, “I’m Still Here,” page 226)
THE GIFT OF COMMUNITY
When I come to visit my mother is’ fun because all the people here respond so
gleefully to me Each person in this community has unique characteristics. It’s
wonderful for me and for my mother.
(John Zeisel, “I’m Still Here,” page 226)
THE GIFT OF MY OWN HUMANNESS
I have learned to let go of my view of what is beautiful is the right view.
It’s their beauty that’s important. They don’t ask for your résumé. All they
want is a smile and a kind, warm look. Your humanness is all that matters.
(John Zeisel, “I’m Still Here,” page 226)
THE GIFT OF EMOTIONAL TIES
With people living with Alzheimer’s you have a strong feeling of doing what has
to be done to make their lives better. It’s not a matter of thinking about what
to do or figuring out what’s needed. You just know. It’s so immediate. Rather
than having emotional baggage, you find you have emotional ties.
(John Zeisel, “I’m Still Here,” page 226)
THE GIFT OF LISTENING
People just want to be listened to. It’s as if you’re called out of a tense
meeting for a phone call as opposed to having your cell phone go off in the
meeting. It gives you a chance for energetic cleansing. That’s what it’s like
being with my mother. She listens so well, and I listen to her so well.
(John Zeisel, “I’m Still Here,” page 226)
THE GIFT OF ACCEPTING DEATH.
We always want to fix everything, and yet there are certain things we can never
fix. The true gift I have learned to give my mother is the strength to face her
upcoming death. By accepting her for who she is, by my not feeling fear and
alarm, she is at peace – and so am I.
(John Zeisel, “I’m Still Here,” page 227)
THE GIFT OF GROWING UP
In order for me to cope with this disease and to learn new ways of being with
my mother, I had to grow first, emotionally, spiritually, and mentally. From
this growth I have gained hope – hope and belief that I have a chance of
growing up someday.
(John Zeisel, “I’m Still Here,” page 227)
THE GIFT OF “WE”
It’s hard to make it an “I” when I am with my mother. If I am not connected to
her when we are together, we lose each other. I have to give up the “I” and
become the “we” with her.
(John Zeisel, “I’m Still Here,” page 227)
THE GIFT OF A KINDER WORLD
My father shows more emotion now than he used to. He sees the world differently
– not as competitive and not as possessive. I am learning to see it that way
too.
(John Zeisel, “I’m Still Here,” page 227)
THE GIFT OF NURTURE
I never had children so taking care of someone is new. It put me in a different
role than I had experienced. Helping my mother helped me. I used to think she
knows better, no matter what the situation. I let go of my expectations of who
and what she was before and accept who she is now.
(John Zeisel, “I’m Still Here,” page 227)
THE GIFT OF REALIZING LIFE IS PRECIOUS
Every day that I come to work I learn so much from all these people living with
Alzheimer’s. Every day I touch someone on a certain level. I see someone
gaining ground in how to do something – even a simple task. When I come to work
I could be in the best mood, or the worst. Now I live in the moment. I realize
that no matter how long a person may seem, there is still a person there. I
have learned that life is precious.
(John Zeisel, “I’m Still Here,” page 228)
THE GIFT OF CAPABILITY
When my mother got ill I found myself being very responsible and necessary. The
sense of being needed was and is still very intense. I had a tremendous sense
of obligation and duty. I never thought I could toilet my mother or clean her
up after she was incontinent during the night. I learned I was personally
capable of so much more than I thought I was.
(John Zeisel, “I’m Still Here,” page 228)
THE GIFT OF REVISITING
Since my mother started living with Alzheimer’s I revisit old things and experiences
in new ways. I am more balanced about them, more tolerant, more understanding.
It is somewhat cyclical looking at the past this way, but I get a smile from
it.
(John Zeisel, “I’m Still Here,” page 228)
THE GIFT OF TAKING RISKS
Every so often my dad says, “Kill me.” But every day they learn something new
about the disease. I take more and more risks every day as a result of my dad’s
illness. I am glad to be alive now.
(John Zeisel, “I’m Still Here,” page 229)
THE GIFT OF UNDERSTANDING BASIC TRUTH
My husband told us he was worried about something he had forgotten to do. My
dad said, “That’s okay, that what I do half the time around here.” We were
talking about the quality of the caregivers here. My said dad, “They have a
good team here. Well, there are times you wish you were someplace else. But
that’s true anywhere.” We all laughed at the basic truth of my dad’s way of
seeing the world.
(John Zeisel, “I’m Still Here,” page 229)
THE GIFT OF VALUING OTHERS
II never thought I’d be taking care of my parents. I never thought I’d be
changing my mother’s clothes. I have had to develop a lot of patience,
scheduling taking care of my parents along with taking care of my four kids.
What I have gained is appreciating the value of others in my life.
(John Zeisel, “I’m Still Here,” page 229)
THE GIFT OF THE ZEN MIND
My relationship with my father has become incredibly direct. The illness has
led to our narrowing things down – to a state of grace, to the Zen mind.
Whereas before we might have analyzed everything and even fought about how we
saw things, now it’s just about “Ow, it hurts!” and “Oh.”
(John Zeisel, “I’m Still Here,” page 229)
THE GIFT OF CONTROL
I’m grateful that my father and I have grown in our relationship. He is a new
person. That “old” person of my childhood wasn’t so easy. He always had to be
in control and I distanced myself. Now he feels good that I am in control and
so do I.
(John Zeisel, “I’m Still Here,” page 230)
THE GIFT OF CONVERSATION
Whenever I realize how little I talked to my dad in my life, and that I can no
longer have those conversations, I appreciate conversations more. I think about
my friends and say appreciatively to myself. “I can have a conversation with
you!” It makes me want to talk more – to call up friends I haven’t talk to for
a while.
(John Zeisel, “I’m Still Here,” page 230)
THE GIFT OF GIVING AND OF GIVING UP
Before my mother lived in this special place, there was such a dependency on
the amount of support that I needed to give. Now that I don’t have to provide
that support I have inner peace, knowing that her basic needs are being met in
a thoughtful way. This has released me to be “ha-ha! hee-hee!” with her. It’s
amazing how much you get by giving up. But you know, even though it was a lot
of responsibility I kinda miss it.
(John Zeisel, “I’m Still Here,” page 230)
THE GIFT OF QUALITY TIME
I have gained a better sense of time in my own life. When you see them – the
people with Alzheimer’s – you realize that time really is fleeting. You really
know what quality time is.
(John Zeisel, “I’m Still Here,” page 230)
THE GIFT OF KIDS COMING TO VISIT
My kids were always afraid of visiting grandfather. They didn’t know how to
deal with his illness. One thing that is so helpful for them, that is a real
eye-opener, is the warmth that staff and families exhibit toward my father and
everyone here. Seeing this has made them much more willing to come visit.
(John Zeisel, “I’m Still Here,” page 231)
THE GIFT THEY TEACH US
In sum, people living with Alzheimer’s teach us to have open hearts and minds
and to become better people. What we learn – the gifts we receive – helps us
not only in those relationships, but also in all the relationship in our lives.
(John Zeisel, “I’m Still Here,” page 231)
BE HAPPY
Be happy in the moment, that’s enough. Each moment is all we need, not more. –
Mother Teresa
(John Zeisel, “I’m Still Here,” page 232)
MEDITATION: STRESS REDUCTION
Stripped of its religious context, mindfulness meditation is simply learning to
have an open and accepting attitude towards whatever arises in one’s mind. This
very simplicity makes it useful as a stress-reduction technique.
(John Zeisel, “I’m Still Here,” page 233)
TIMELINES
The line of time that most of us experience comprises:
1) the past about which we hold many “what if” regrets,
2) the present that is always fleeting – we never have “enough” time,
3) the future that we worry about because we can’t predict which of the
infinite alternative things that might happen will actually occur. We believe a
clearer vision of the future would help us make better decisions in the present
moment.
(John Zeisel, “I’m Still Here,” page 233)
POINT OF TIME
People living with Alzheimer’s tend more and more to experience a point of time
rather than the time line. It is as if past experience and the future have
drawn together with the present as one; much like how our unconscious minds
combine several dimensions of time and place when we dream. The present moment
represents all moments. People who meditate regularly strive to be in the
present moment.
(John Zeisel, “I’m Still Here,” page 234)
THINKING ABOUT THE NEXT MOMENT
In our daily lives our minds are always churning with thoughts, as we think
about things other than what we are dealing with at the moment. When we are
washing the dishes we think about a conversation we had earlier in the day or
about something we plan to tell someone the next day. The next day when we are
with the person, we think about next months’ vacation. When our bodies are in
one place and our mind in another we don’t truly experience the present
moment. Medication plays a role in more
self-improvement, spiritual, and religious practices by bringing the anxiety of
the past and future together with Alzheimer’s point in time. So we can be more
understanding of each other.
(John Zeisel, “I’m Still Here,” page 235)
THE IRONY
Those who experience “normal” time as a line, work hard to forget the regrets
they have about the past, and put aside their worries about the future that
they cannot control. At the same time they often urge those living with
Alzheimer’s to replace their experience of time as a “point in time” by
searching for past memories and thinking about the future. Awareness of these
capacities provides us with peace of mind and with important insights for
finding the key to connection with those living with Alzheimer’s.
(John Zeisel, “I’m Still Here,” page 236)
