Holland “Dutch” Harpool, 85, and his wife Patricia “Pat” Green live in Overland Park, KS. Dutch has Alzheimer’s Disease, and sat down with Dementia Care Specialist Lora Swartzendruber to share his thoughts on living with memory loss.
How many years have you had Alzheimer’s Disease?
Six years ago it was suspected. Two years ago after that it was confirmed so that would be 4 years ago.
So you’ve been living with it for about 6 years?
Yes. And it’s gradually gotten worse; I guess it’s like leprosy it just gradually takes over. It’s very frustrating. My anger is much more explosive than it used to be. I’m more easily frustrated. I’m constantly frustrated by not being able to retain the gist of conversation, or to think of a word or to think of a name or to think of a lot of things.
Is that something that you’ve realized about yourself or is that something that someone like your wife has told you?
Partially. Both. Also the repetition of questions gives me a strong clue and my inability to stay focused at times. If you were to ask me to go upstairs and bring something down and I would go upstairs and I would see something lying on my desk and I would say “oh yeah, I meant to do this”…it’s hard to stay focused and I’ll go blank in the middle of a sentence and also during the day I find that I decline; my ability to focus declines in the morning when I wake up first I’m pretty groggy, but I can get past that I’m sharp. I can think, I can analyze, I can start the day, but then the longer I go into the day, I sit at my desk and think which one of those was I going to do? And then I don’t do any of it, it’s very lackadaisical.
This was interesting, a woman who was my production assistant for years, sent me a book [Deeper into the Soul: Beyond Dementia and Alzheimer’s Toward Forgetfulness Care by Nader Robert Shabahangi, PhD and Bogna Szymkiewicz, Ph] when she found out I have Alzheimer’s and I was looking through it today and it says “we forget many things that other people feel and know”. People who have AD forget that other people are hard of hearing or need glasses or that people who are walking on crotches or are crippled- we forget things as unusual as that.
Why does that stick out to you?
Because I forget a lot of things about people that I know, problems they’ve had, places they’ve lived, and sometimes I’ll say, “Where did you live before you came here?” “Well, I told you”, they’ll say. I’ll say, “Oh, yes!”
How does that feel when you forget something important like that about a person?
It’s embarrassing, but at the same time, I accept why I don’t know. Here’s another thought from the book: “We forget many things that people who don’t have AD feel are worth remembering and people with AD forget them, like birthdays.” Well, birthdays aren’t too big of an example. (Dutch laughs.) It’s like we move into a parallel world, where the realities are totally different and we can’t really recognize some of the other realities. Like, for example, my wife wills say, “Get the pen.” And I’ll say, “Pen? Pen? What’s a pen?” That hasn’t happened yet, but that’s an example of what’s coming.
Do you worry about that happening?
No. It’ll happen sooner or later and she’ll have to get used to it.
Is it about preparing?
Yes. It’s more about preparing. Actually, it’s just about accepting that things are going to change for me; that I’m going to be somebody totally different from who I’ve been.
If I had to describe your relationship to this disease, I would use the word empowerment. Do you think that fits?
I think so. Yes. The disease has empowerments.
Well, and you’ve used empowerment to face the disease.
Yes, that’s true. There’s nothing I can hide from. There’s nothing I can run away from so I’m just making the best of it that I can.
I respect that.
This book speaks of consensus reality and the reality of people with AD. People with AD can’t always discern or define what they are seeing or thinking and they can’t express to people what they are thinking or seeing or what is happening to them because they don’t have words for it. It’s like you’ve moved into a different country.
I have found this book although written for caregivers very useful. I can say, okay that’s where I am now; that’s what’s happening. We with AD past a certain point especially, are trying to understand a world that others urge us to recall and we can’t because to our knowledge we never experienced it.
Those are poignant thoughts.
Yes, they are. When I can look at things objectively it helps me to know what’s going on. “Yours is a world of remembering and mine is a world of forgetting.” That’s a wonderful sentence from the book for anybody who’s going through this difficulty finding and using words and understanding. Some words just don’t feel familiar to me at all.
I have difficulty following directions because I can no longer remember where things are, but I can remember, I’ve found, symbols. Pam, my wife, was going to go with me to a panel I was serving on, she said, “I’ll go with you”. We turn off the interstate on Broadway and then we go to 20th street and I thought “Oh, 20th street there’s that thing on the corner there”.
There’s a landmark.
Yes, a landmark. And then I thought,” Okay we go to such & such, and we go around the Y there and then I will turn left, but I won’t go all the way up the hill; I’ll turn on this street here and there’s a big white brick building there outside.”
Finding landmarks is another way of coping with AD.
Yes, exactly. Exactly. Confusing the past and present is becoming more and more one of my problems. I call my son to say, “Well, we just got back from Salina, KS”. And he’ll say, “Yeah, Dad, you called me yesterday to tell me that”. And I say, “Oh”. That bothers me because your parents are people you don’t want to get weaknesses. But anyway, people with AD confuse the past and the present; that’s what happens to people like me.
Well, Dutch, you handle it with grace. You truly do.
Thank you. And Grace handles it with me. (laughs) See there’s humor again. Too serious and I try to shut it down.
Any final thoughts? Anything you’d want to tell someone reading this interview?
Find your way. Don’t try to make your way. Find your way. Discover what you can and can’t do. Discover what people can no longer expect of you and be able to tell them that.
Spoken like a poet.
(Dutch laughs) Thank you.
Please enjoy some of Dutch’s poetry and writing.
When I Was
By Holland Harpool
I bought my Self a bicycle and
felt the world turning beneath me.
I hoisted a kite on a string and
fished for the wind.
I tossed a pebble at a cloud and
bent a blade of grass.
I did all these things and more
and when I had, I placed them
in a red lacquered box
lined with silver silk.
And waited
until my hands had turned
more calendar pages than
there are leaves on the
world’s tallest tree.
And on a day when the rain’s
teardrops were caressing the
cheeks of my windows,
I took them out, one by one,
and learned how a lake feels
when its ripples are touched
by moonlight.
My office window in springtime
by Holland Harpool
Out there
somewhere
birds sing
swings swing
grass grows
wind blows
fresh air
everywhere
brooks run
shines sun
lips touch
there’s much
out there…
oh dear
I’m here!
Remember…
by Holland Harpool
At first I believed
you were only shy
and that in time
your love and mine
would be as alike
as moonlight seen
through one set
of eyes. But I
guess I forgot
that some people
prefer to look for
craters, while
others choose to
look for faces and
others, such as I,
never see the
moon with
our eyes,
just
moonlight
with out
heart.
Behind my mask
by Holland Harpool
There is within us each
a street of emptiness
waiting for the footstep
sound of hope approaching,
There is an unseen veil
we wear to hide the
child face with its eyes of
caution that look for a
soft glow of acceptance,
There is a mirror of Self,
a posed portrait which we
hold before us to show the
world, and which we oh-so-
carefully hide behind.
But mirrors can be taken
down, and veils lifted, and
barricades moved and
Helpless Hope changed
to a Triumphal Now as we
let the light of our Me
reveal our Self, our My
Self that we have
hidden behind our mask.
The Boy Who Played Trumpet
By Holland Harpool
Many say that jazz is the only true American music, although there are some who will argue with that. But even those who disagree with the idea are aware that jazz, like the nation where it was born, has undergone many changes. Yet one thing about jazz has remained constant, and that one thing is the kind of people who play it.
For the most part, they are people who enjoy, really enjoy, working with other jazz musicians. In the creation of their blend of sounds, they are openly appreciative of what those others contribute. And, as you might suppose, this respect for sharing carries over into relationships with people whose hearts and minds are not quite in tune with their own. Sometimes this happens to an unfortunate degree.
I think of a young man I once knew who played trumpet, back in the time when jazz was a Big Band type of music. These bands always had a group of trumpet players, and the boy was good enough to play first-chair in the trumpet section and also take the solos given to that section. This was called “playing lead and go,” and he did so while still a teen-ager – a degree of musical success quite rare in those times for such a young person.
As often happens with young people, and with those not quite so young, this trumpet player was vulnerable to beauty other than music. The particular beauty of which I speak came into his life in the person of a young girl with hair more golden than his trumpet and eyes more blue than any blues song. She was from a family with greater success in the accumulation of money than his own. And, yes, her parents felt a jazz musician to be less than a perfect match for their daughter.
In truth, it must also be said that while she loved the boy, she too found his trumpet playing to be something of an embarrassment.
It so happened, as time went by, that his love for the girl became greater than his love for the music. The golden trumpet which had been the center of the circle of his life was replaced by a golden ring that encircled his finger. But this happened only after the girl’s father had arranged an office job for the boy in a company owned by a friend.
As years passed, the trumpet case lay unopened on a closet shelf gathering dust.
At the same time, with the help of his wife’s guidance and encouragement, the young man achieved quite an acceptable level of success in her world. She helped him choose clothing more appropriate to their kind of life, helped him learn to play golf and tennis, helped him in the selection of the right kind and color of car, helped him gain membership in a certain country club, helped him in so many ways.
Which is why her family and friends could never understand the reason he phoned her one evening to say he wasn’t coming home any more. And why the only thing he had apparently taken away with him was the trumpet, which had gone so long unplayed.
Opinion was divided as to whether the reason for his ingratitude lay in faulty genes, or the jazz environment in which she had found him.
Perhaps it was neither, or both. Or perhaps it was simply that they gave too much of themselves to each other. And gifts given as barter cease to be gifts, becoming instead a price too high to pay in the long, long run.
