By: Margaret P. Calkins, Ph.D.
I must confess, I don't have Alzheimer's disease. So I can't
tell you, in my own words, how the world looks to someone who has
dementia. But given that the theme of this issue is "The Lived
Experience of Dementia" I thought I would share three stories
with you-stories that might give us some insight into what it is like
from the perspective of the person with dementia/their perspective.
The first story comes from the book My Journey into Alzheimer's
Disease by Robert Davis. After having been diagnosed with Alzheimer's
disease, and finding it necessary to retire as minister of his church,
Robert and his wife decided to take that cross-country trip they
had always planned on doing once they had the time. Unfortunately,
their timing was such that they arrived in New England on the peak
fall "leaf peeping" weekend, and there was not a hotel
room to be found for 300 miles. After spending one night taking
turns sleeping in the car and walking the aisles of L.L. Bean, they
found a hotel for the next night and checked in as soon as they
could. Robert's wife Betty, who helped in writing the book, described
what then happened.
"As we carried our things into the motel room and I collapsed
on the bed, thankful for a place to stretch my weary body, Bob just
stood by the dresser. As I looked at him, my heart was gripped by
an icy terror. The look on his face was one I had seen so often
on his mother's face. How can I describe it? Empty, confused, blank,
perplexed, unmoving. Yes, all of these. I said "Honey, what's
He replied in the most pitiful, childlike, pleading tone, "I
can't find the bathroom." I went to him. "It's right here,"
After two hours of sleep he was "back again." That look
did not appear until a week later after another too-long day of
driving. We were already on our way home after only two weeks away.
We had learned that we needed to learn some more about our limitations
and also travel at a less crowded time. This time, the "look"
occurred as he picked up the ice bucket and again stood glued to
the floor. "What's wrong?" I asked.
He replied "I can't find the door." I showed it to him,
and he replied "Oh, I thought that was the door to the adjoining
room." Needless to say, I propped the door open so he could
find it on his return from the ice machine, which was only three
doors down the hall" (p 79-80).
The second story comes from Carol Hocevar, an inspiring woman who
is facing the challenge of Alzheimer's Disease. Having been a 5th
grade school teacher for 38 years, Carol has had to retire because
of her dementia. But the skills she developed as a teacher are serving
her well now. When faced with her increasing inability to follow
recipes to make dinner, she and her caregiver Sharon took their
favorite recipes and rewrote them in clear and concise steps ("Take
the chicken out of the refrigerator at 10:00 in the morning")
on cards, which they then laminated. Now, when she does a step in
the process, she draws a line through it so she knows it was done.
When she's all through, they wipe the card clean and it's ready
to use next time. Carol only remembers something that she has written
down. If she wants to go to the kitchen for a drink of water, she
knows she needs to write it down on one of the many pads of paper
that are kept around the house. If she doesn't, by the time she
gets to the kitchen she may have forgotten what she wanted. When
she gets the water she crosses the note off. She still drives, but
only to places she can visualize the whole path to. "If I can't
see the path, I don't go there."
Used to being busy and helping others, Carol found being home all
day was not very satisfying. She now gets a kit from the library
each week, which has ideas for songs and discussions, and occasionally
a video, which she organizes into a short program. On Tuesdays,
Wednesdays and Thursdays she goes to a nearby adult day program
or local assisted living facility for people with dementia and runs
the program. There's no pressure that she has to "be right",
the people seem to enjoy it, and it gives her a tremendous sense
of accomplishment, knowing she's brightened their lives a little
bit. This also provides important structure to her week; it helps
her to keep track of time/, so it helps her keep track of time.
"Structure is so important." Carol told me, "I have
a central place in the kitchen where I keep my daily calendar. I
write everything down in it that I need to do. It's my mind on paper-my
Not everything is easy. Carol says it's hard to let go. "I
used to be a 'dot the i and cross the t' kind of person-being a
schoolteacher for all those years. But I'm learning that it's vital
to be able to let go of things when they're not that important.
I have a good cry, and then just say 'OK, that's something I can't
do any more." But when something is important, like her ability
to cook dinner, she and Sharon find a way to make it work. Reading
was also a passion for Carol. She fit it in around her busy schedule
while she was teaching. And when she retired, she thought she'd
have lots of time to read. Unfortunately, now she can't always keep
track of the characters or the plot of the story. Rather than give
it up, or just read simple stories, she discovered books on tape
at the local library. Now she can listen to the book, and when she
misses something, she can rewind the tape to listen to what she
missed the first time. Or, if it's not important, she just goes
on. "It's not like I have to write a book report on it or anything.
There's a difference between a threat and a challenge. If there's
something I have to do, and I can't, then that's a threat. And I
learn how to let go of it. I tell myself I did it well when I could.
But I can't now, so I just let it go."
The third story is my own, from almost 20 years ago, which was
about the time that plastic 'credit card' type keys were being introduced
into hotels. The hotel clerk who handled my check in asked, as she
handed me the key, if I needed instructions. I said no, I had used
them before-which I had, once. I must admit to feeling, not smug
exactly, but like an experienced traveler. When I got to my room,
I inserted the card, removed it and turned the knob to enter (this
was before the days of ADA-required lever door handles). Well, the
door knob turned and turned and turned, but never "caught"
to unlatch. "OK," I thought to myself, "you must
leave the card in the slot." So I inserted the card, left it
in, and turned the door knob, and turned and turned. "Maybe
you insert the card and pull it out quickly." Turn, turn, turn.
"Maybe it requires a slow motion." Turn, turn . . . well,
you get the picture. I was beginning to feel very foolish. After
all, I had a Master's degree in Architecture! I ought to be able
to figure out how to open a silly hotel door!!! After almost five
minutes of trying, I finally humbled myself (that's honestly what
it felt like) to asked a housekeeper down the hall for assistance.
"Oh everyone has that problem at first. You have to insert
the card" (I nodded, knowing this was the first step) "pull
the door and turn the knob." She very nicely walked back with
me, and we tried the recalcitrant door. It opened very easily, just
as if it had not just caused me much gnashing of teeth. I thanked
the housekeeper and went into the room, feeling like a total fool.
I was embarrassed at having to ask for help over something as simple
as opening a door. The more I thought about it, the angrier I became.
It wasn't my fault, after all. It was a dumb design. You don't usually
have to pull the door to make the doorknob catch so it will open
up. It's not my fault at all. Feeling a little more righteous, I
sat down on the bed, and gave it a little more thought.
Why had the experience upset me so? A couple of reasons. First,
I KNOW I know how to open a simple hotel door. It's not like I was
trying to break into Fort Knox or anything complicated. But I couldn't
make the process work. I couldn't make the key that the hotel clerk
had given me work the way I knew keys were supposed to work-even
keys that look like credit cards. It was also my pride. I hated
having to "embarrass" myself to ask a housekeeper (it
would not have mattered who I asked, she was just the first person
I saw who might know how to make it work). I considered (and still
do) myself to be quite environmentally astute. I seldom lose my
way, and can fix a lot of things easily. So it hurt my pride to
have to ask for help on something supposedly as simple as this.
And then, sitting there on the bed in that hotel room, I realized
I had just been given the opportunity to experience-on a small and
temporary basis-what it's like for people with dementia. Struggling
to make something work, something they KNOW they know how to do,
but simply not being able to make it all come together and work.
The frustration, the hurt pride, the embarrassment. Now, I had a
sense of what it was like for them. However, for me, it was a single
experience-not an everyday occurrence.
How we face our challenges is as important as the what challenges
we face. Some people freeze up with fear and terror, as when Robert
could not find the doors in the hotel rooms. Others are ruled by
emotion, as demonstrated by my near catastrophic reaction to not
being able to complete a task I thought should be simple. Others,
such as Carol, are able to recognize passing capabilities, and let
go with dignity.
Everyone has these types of experiences over the course of their
lifetime. People with Alzheimer's disease face it on a daily basis,
and struggle to make sense of an increasingly complex and foreign
world. It's not the experience that matters. It's what you learn
from it, how you handle it, that's important. So I invite all of
you to take a moment, think of an experience you have had that gives
you insight into what it is like to live with Alzheimer's disease
or another dementia, and share your story with others. Think about
whether there are ways you can alter the environment to reduce the
frustration it can cause someone with dementia. Do things work in
simple, easy to use ways? If not, how can you modify it to make
it easier for someone with Alzheimer's disease or a related dementia?
Remember, you can make a difference in someone else's life. That's
what being a caregiver is all about.
Margaret P. Calkins, Ph.D. President, I.D.E.A.S., Inc.: Innovative
Designs in Environments for an Aging Society. mcalkins@IDEASconsultingInc.com.
Reprinted with permission from Aspen Publishers, Inc., Alzheimer's
Care Quarterly (ACQ), Volume 2, Issue 2. Order by calling 1-800-638-8437
or on-line at www.aspenpublishers.com/journals/acq.
I would like to thank Tyndale Publishers for giving permission to
quote from My Journey into Alzheimer's Disease, ©1989, by Robert
Davis. All rights reserved. I would also like to thank Carol Hocevar
and her caregiver Sharon for sharing their stories and brilliant
ideas with us.