….this spouse
shares creative solutions of learning to speak
Alzheimer’s
Rose sits in the
lounge chair. The morning rays of sunlight shine on her
face, illuminating her once bright, blue eyes. A person
greets her, “Good morning Rose.” Rose doesn’t respond,
doesn’t recognize this person who is greeting her.
Morning follows morning, day follows
day at Memory Care Manor where Rose now lives. Family
photographs hang on the wall, persistence of a memory
long ago. Rose sits waiting, waiting for Jack, her
husband, who is coming for a visit. And when he enters
the lounge, prepared to assist his wife of 57 years with
her breakfast, Rose displays no apparent recognition of
him.
Rose remains motionless, eyes
fixated. This could mean that she no longer knows her
husband. Or it could mean that she doesn’t wish to
violate the etiquette of Memory Care Manor with an
enthusiastic greeting, which may be interpreted by some
as inappropriate. Or it could mean that the acceptable
response to a “Good morning,” from Jack, is a dead-eyed
stare.
However, Jack finds encouragement in
this lack of reaction. He continues to prepare Rose to
eat her breakfast. Jack is not surprised. He knows that
Rose has Alzheimer disease. What Jack doesn’t
comprehend, is why his darling wife of 57 years, no
longer speaks to him.
Jack lives close by Memory Care
Manor. This day, following his visit with Rose, Jack
visits the public library. He has decided to tackle
head-on, his own research of learning to speak Alzheimer
disease. In the library that day, Jack learns that in
1906, Dr. Alois Alzheimer examined a slice of brain
tissue under the microscope, identifying plaques and
tangles surrounding the brain cells, a hallmark of
Alzheimer disease. As a result, there may be mental
deterioration. Jack learned that the person affected,
his Rose, may no longer be able to communicate as they
previously could. Due to the mental deterioration, the
language center of the brain may be affected.
Consequently, the person has difficulty understanding,
or being understood. Jack begins to realize that Rose is
doing the best she can.
The next morning, Jack arrives early
at Memory Care Manor, armed and ready with his new found
knowledge. Rose is sitting in her familiar place in the
corner of the lounge at Memory Care Manor, motionless,
waiting, waiting, waiting.
When Jack enters the room with a
cheery “Good morning,” he makes a special point of
warmly embracing his wife. He then asks the caregiver if
she might play a soft piece of classical music (Rose’s
favorite) on the stereo. Jack moves Rose’s lounge chair
to a quieter corner of the lounge, removed from the
other noises and distractions. He then brings Rose’s
breakfast tray and sits with her, preparing to feed her
breakfast.
“Here my Rose, have some porridge,”
says Jack, offering a spoonful to Rose’s lips. No
reaction. This does not discourage Jack. He takes Rose’s
hand and holds it, as he offers a second spoonful of
porridge. This time, Jack notes a special little smile
around Rose’s mouth as she swallows the cereal.
Something else he notices, is that Rose’s body language
is more relaxed. She is listening to the classical music
softly playing in the background.
Jack leans forward, closer to Rose
and says, “Does my Rose love me?” At first, no response.
And then, Rose also leans forward, puckering up her lips
for a kiss. Jack responds in kind with a kiss. Once
again, Rose puckers up her lips and leans forward. Jack
smiles and says, “My Rose wants two kisses.”
The interview with the husband
follows:
Jack, when did you first notice
that something might be wrong with Rose?
It was a gradual thing. Rose had short-term memory loss
and this was distressing for her. She couldn’t seem to
remember from one minute to the next what she had done
and not done. She would tell our daughter a story of
something that had happened, and then five minutes
later, she would tell the same story.
It is interesting that in spite
of the fact that Rose doesn’t speak to you, you still
remain so positive. Could you comment on that?
I can see her brightness vanishing, but I love Rose
because she is so loveable. Nothing can ever change
that. Not even this Alzheimer’s disease. I believe that
Rose’s spirit is alive and well, in spite of it all.
This keeps me going.
And you mentioned she had a
special little smile that morning. What do you think she
was thinking?
Rose and I met on Valentine’s Day. That same piece of
classical music was playing when we met. And that
morning when the girls played the music, and I saw
Rose’s little smile, I really believe that she is
remembering too.
When Rose sits there in her
chair, larger than life, you must feel wistful for days
gone by. Do you want to talk about those feelings?
Well, yes, I’m pretty attached to my memories with Rose.
We’ve been married for 57 years. That’s a lot of years
and a lot of memories. I guess though, I’m coming to a
place where I feel like Rose and I can still have a life
without those memories. I know that sounds kinda
strange, but I tell the kids, “Mom and I are making new
memories every day.”
Jack, how do you handle it when
Rose no longer recognizes you?
It makes me sad. I tell myself, this disease is not
about me. But I can’t help my feelings. Rose has always
been so vibrant and alive and chatty. These days she is
in her own little world.
You mentioned you had done some
research on the subject at the public library. Was this
information useful for you?
I’ll say. I was reading about the mental deterioration
and the fact that the brain size is actually shrinking,
and about the plaques and tangles surrounding the nerve
cells of the brain. I can understand that the language
centre of Rose’s brain may be affected, and this is why
she no longer speaks to us. I mentioned before I believe
Rose’s spirit is alive and well, in spite of the
Alzheimer’s. I believe my Rose is still in there, and
when she doesn’t speak, she is swallowing her feelings.
How do you deal with the silence?
I now understand that Rose is doing the best she can.
It’s hard sometimes because I’ll be talking to Rose
about a memory or something we’ve done together with the
family, and I pause, waiting for Rose to respond like
she always has. And there’s silence. That’s hard to
take.
What are some of Rose’s favorite
things? And is she still able to enjoy some of these
things?
Rose always had incredible energy and creativity. She
spent countless hours with the children, of course she
was a mother first, but Rose was very involved in
community and school committees. And she loved to
entertain. Rose was always busy helping others. Today,
Rose still loves having people around her. And she
enjoys listening to stories.
Let’s talk about you for a moment
Jack. What things do you do to take care of yourself?
I read a lot. And I enjoy walking. I’m here at Rose’s
side every day, and when the weather warms up, I’ll take
Rose outside to the garden. We always enjoyed working in
the garden together. I still do.
What did you feel in that moment
when Rose puckered up for a kiss?
Our eyes connected briefly just before the kiss, and I
thought to myself, “I’ve got my Rose back once again.” I
was so astonished; I hugged her and said, “we really do
love one another, don’t we Rose?”
Your journey with Rose has
encouraged so many. What do you tell people who are
angry?
I tell them that there is help and there is hope. I
haven’t worked it all out yet. I’m struggling. But on
the good days, I know that this Alzheimer disease has
happened to my Rose for a reason. And I’m grateful that
we have this time together.
ANALYSIS
Getting Started
Communicating with the person with dementia can prove to
be one of the greatest challenges. This individual may
no longer communicate with words. Rather, they
communicate with feelings. Because of this, frustration
levels can run high, both on the part of the person with
dementia and their caregiver. The communicated message
may not be received or understood. The person with
dementia may not be able to express themselves or even
complete a simple sentence.
Jack truly believes that Rose’s
spirit is alive and well. Sometimes, this is the only
hope that families have.
Adding Flavor
When caregivers face this situation, they need to first
assess who is this person? Although the individual may
not be speaking, their body language is alive with
feelings. Is the person happy, sad? Are they moving
around in an agitated manner? What are the eyes saying?
The eyes are the ‘windows of our soul.’ Jack has learned
to read the message in Rose’s eyes and her relaxed body
language. Jack discovers that he needs to pay particular
attention to Rose’s facial expression, as he notes “a
special little smile around Rose’s mouth…………”
Putting it all Together
A large part of communicating with anyone is related to
‘the knowing.’ Knowing who this person was prior to the
dementia. Jack knows that Rose loves classical music. He
knows about her personhood, and her sense of self? When
caregivers have this information, they are then able to
embrace who Rose is, and to understand her emotions so
much better. This truly enhances the communication
process, empowering both the caregiver and the person.
What Works:
- gentle touch
- understanding the body language
- knowing the person
What Doesn’t Work:
- noisy environment
- rushing the person
- don’t talk about them in front of them
Suggested Readings:
- There’s Still a Person in There; Michael Castleman,
Dolores Gallagher-Thompson, Matthew Naythons; 1999
- Best Friend’s Approach; Virginia Bell, David Troxel;
2002
- Learning to Speak Alzheimer’s; Joanne Koenig Coste;
2004
Gwendolyn
deGeest RN,BSN,MA has been working in dementia care
for over two decades and has witnessed the joys and
sorrows of families struggling to maintain a quality of
life for themselves and their loved ones. Gwendolyn’s
thesis, “The Relation Between the Perceived Role of
Family and the Behavior of the Person with Dementia” is
published in the American Journal of Alzheimer’s
Disease, May/June, 2003. This work was presented at The
International Congress of Gerontology, Vancouver,
Canada. Gwendolyn resides in Vancouver, with her family
where she is a professor. Gwendolyn welcomes your
questions/comments at
gmdegeest@cruiserespite.com
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