Richard’s Phone Interview, January 2011

Interview, January 2011 Richard Taylor Phone
by Jacque Budd

This is a transcript of an interview I had with a professional caregiver who had called me earlier and asked me if I would answer a few questions. The person she was caring for, and that person’s relative were also listening to the conversation. I think it was her son. Midway through the interview the person living with the symptoms of dementia said: “He knows what he is talking about” or something to that effect. She had not spoken in some time, and it was thought she was living so deep into the symptoms of dementia that she was unable to communicate – at least that is how I remember the story. In any case, what started out to be a 30 minute interview ended up being a three hour interview. Here it is.

It was transcribed by a very good friend of mine living in Switzerland, Bettina Hackel. I thank her for the time and effort she put into this project. She is now translating it into German! This is not a professional transcription. English is one of a number of languages Bettina speaks. She is an amazing person, in and of herself.

TAPE/TRACK 1 of the PHONE INTERVIEW:

RICHARD:
Just let go!

JACQUE:     
Why are we used … tell us what Alzheimer’s is believed to be in its symptoms!

RICHARD:
Okay.
Understand, I’m not a physician. I can’t tell you what it takes to diagnose this. This is just from my own experience … and from what other people tell me.
Alzheimer’s is a form of Dementia, which is really the keyword  the doctor will say: Of this type or that, and then he will say: probably of the Alzheimer’s type or Lewy Body type or Ischemic  Dementia …
And for some forms of Dementia there are tests, to see if you actually have that form of dementia.
Of Alzheimer’s there is no universally accepted test, and there’s really no consensus accepted to that test, so everyone would say: oh, yes, you got this form or that form, it just shows up in this  machine, and so we know you had Alzheimer’s.
You know what I mean, just something of an objective test.

JACQUE:
Do you know what…

RICHARD:
Well, it’s Alzheimer’s.
Alzheimer’s a form of Dementia.
The word Dementia means in French crazy. As when people began to live longer than 35, 40 years, right after the French Revolution, as they reached their fifties and sixties, a lot of them had Dementia, and the people in France and really around the world, lived longer and longer, they didn’t know how to characterize that, so they called them crazy.
Though we know that’s the wrong word probably to use for any kind of mental illness and certainly for physical illness.
What Alzheimer’s  is come  to me is, that a form of Dementia, I forget more than other people do, significantly more than other people do, and I have one (if you have to be diagnosed), one other cognitive ability that is slipping.
They used to say, my cognitive abilities are dying, but … well … I believe, they never die, they just slip. They’re inaccessible at some times, then at other times they are accessible.

Oh, oh … one of the things I tell people that Alzheimer’s is NOT, it’s not a death sentence. It doesn’t mean that I’m any closer to dying than I was before the moment the doctor speculated about the kind of Dementia that I had.
And unfortunately, because we see Alzheimer’s as a death sentence, are actually dying before your very eyes, that’s why it came to be called  “The Long Good Bye”.
And indeed, when we see it that way as the symptoms make it more and more difficult for us to recall in order ……………………………………………………………………………………………………
the same way that you recall, we begin to understand reality differently than you do, and people say, we’re fading away, when in fact, we’re not, no one ever fades away.
Not even old soldiers … we’re still all here, we just have some equivalence problems and some organisational problems that you don’t.
And so, when we retrieve information, we don’t retrieve information that you do, so we understand the moment differently than you do. Or we organize things differently. Or we remember it differently.
But Alzheimer’s is …at one … what I call a chronic disability. That’s right: it’s a chronic disability.
It disables you, and then it gets worse and worse, and there’s no cure for it. There are some things you can do, just as with Arthritis, you deal with some of the symptoms, but they have a regressable cause of it, because we really don’t know what the real cause of Dementia is … yes … nor do we know what the root cause of one of the forms of dementia is.
So, Alzheimer’s is forgetting; Alzheimer’s is: being in a moment that is not exactly the moment that people around you are in; and the longer you live with the symptoms of dementia, the more frequently that happens to you; or those moments become uniquely yours, rather than reflecting things how other people see them.
Eventually in Dementia …………………………..begins to ……………………………..the symptoms are chipped … I believe, later into the disease, and as these begin to decline, you could lose the capacity ….you could lose some of the bodily functions that you have.
No one ever dies from Alzheimer’s; you die of Alzheimer’s related something, they usually get respiratory problems, because the body has forgotten, it can’t master to clear its own lungs. It has lost the ability to control the swallowing mechanism that you have.
Or … becoming dehydrated because of emaciation.  It has troubles to control your blood pressure or your heart rate.
The brain, you know, is so central to everything in your life; but the disease in and of itself doesn’t kill you; it’s the consequences of it. Personally I’m not sure, “disease” is the right word to use when you talk about Alzheimer’s. As if we talk about a disease, we think about something that can be cured. In the sense we can either cut it out or we can give you a pill, because as we figured out the one second you didn’t have Alzheimer’s, and then something happened between your ears, and then the next second you did have Alzheimer’s. But we got a pill that’s gonna block that from happening.

I’m not sure that Alzheimer’s  isn’t just part of aging … in general, isn’t just part of an aging brain. And some people’s brains age faster than others, and if people live 150 years, we’ll all have Dementia.
There are those who really believe, Alzheimer’s is a disease, in a sense as cancer is, and so we can be cured, the disease could be stopped, it can be reversed. There’s no consensus building that that’s true or false. There’s just no consensus..

The year of the National Institute of Health, that’s what they call a consensus conference, and they pick one of the major diseases to look at, all the researches …. done for that in the last ten years, and then they say: Where should we put our money’?
Where are the growing consensus, even when we don’t know everything, what about most people agree, this part is true.
They went through 21 pages and every paragraph again, there is no scientific basis for this belief, and there is no consensus growing for this belief.
That doesn’t mean a lot of well-intended, smart people don’t believe they know what causes Alzheimer’s, or they have some idea how we might cure it.
It just means the scientific community as a whole is not colophon around this theory or that. Just seems there is no consensus about what to do. We learned about a lot of blind alleys in trying to understand it. Fishing in the dark, when you throw a pole, you pull a lot of things out until you pull a fish out  … and you can’t see it, but you feel it in your hands and then you say: Ah, I know it’s in the ocean. What are you doing in the dark?
You know one thing about your brain – there are two billion brain cells and you figure it out how these things work or these thousands, but you don’t know how these get along with another fish or what happens down there in the dark.
Some breed and create this kind of fish and some others create that kind of fish.
We’re standing in the dark, when we ask people.

A story in my book is about Albert Schweizer, he was a famous philosopher. He went in the jungle to write a book, and he got lost and somebody found him.
It was called “Search for the historical Jesus”. Because he wanted to find out, is there real evidence, some kind of evidence, so that everybody says: Yes, this is the Jerusalem Post of one eighty, and this is the birth notice of Jesus Christ, from Mary and Josef. You know, some little piece of evidence, about everyone could agree: this is the historical Jesus.

And so, when people tell you about who Jesus was, he concluded, what they were telling you, was the Jesus they  wanted to be, think Jesus should be or was, not who he actually was.

And so, when people tell you they know what Alzheimer’s is, they’re telling you:
“Well, this is the way my grandmother was”.
Or: “This is the way the hundred people I’ve seen come in my office, were.”
Or: “This is the way my professor at the university who had Alzheimer’s was.”

They just know “Gold Standards” about the way Alzheimer’s is.
Its symptoms are: forgetting.
Forgetting more than other people forget. We all forget naturally by the aging.

They say: “Alzheimer’s is not a natural part of aging.”
No one can tell you … well … how do you know when you crossed the line, what’s the moment when you didn’t have Alzheimer’s, and now you do have Alzheimer’s.
How much do you have to forget, how do you have to forget in order to know if you really have Alzheimer’s.

I sat next to a famous researcher once, and I asked him:
“How do you actually diagnose Alzheimer’s?”
And he said to me: “I can smell it.”
So what does it smell like?
Well, what he meant was … and then I asked that my own neurologist, who diagnosed me, and he said:
“I can diagnose 90% of the people who come in to be diagnosed with dementia. I’m sitting in my office across the hall and just looking through the crack in the door.”
I said: “How could you do that?”
He said: “Because they’re so far into the symptoms of this, it’s not a close call.”

And I think that is what happens to a lot of people with forms of Dementia.
They begin to forget more than other people do.
They begin to be confused more than other people do.
But we don’t get them to the doctor, we don’t get them diagnosed; in fact, we don’t do anything about it, until they’re deep, deep, deep, deep into the symptoms.
And that’s how people think about and remember Alzheimer’s.
They remember someone they knew, who died from it.
And how they died and what the cause of that was. And then they hear me talk and answer a question about what Alzheimer’s is, perfectly mimicking an answering profiler …
They say: “You don’t have Alzheimer’s!”
Now, what they are telling me, is:
“You don’t behave the way I think people with Alzheimer’s should behave.”

But because all of Dementia expresses  itself the way doctors know you have it, is by what you say, by what you do.
And what you say and what you do, is to a great extent determined by your brain, and every body’s brain is different.
So everybody expresses the symptoms of Dementia slightly differently.

But when you talk to … especially physicians, they can assure you, you’re in the 2nd stage of Alzheimer’s, or in the 4th stage of Alzheimer’s or whatever stages they happen to use.

A lady called me once at a calling show, and asked:
“Oh, what stage are you in?” and I said: “What are my choices?”
She said: “Well, I wonder about what stage you’re in, as in one stage of eleven stages.”
And so I said: “Well, I’m probably at 3 or 4”, and then she said: “A, B, C or D?”

You know, these are just words that people make up.
I’m not sure that this is the right question to ask, but it’s the first question everybody asks, and it’s what people want to know: Do I have Alzheimer’s or not?

I think what you want to ask is: Is the kind of forgetting I’m doing the kind that seems to be … that will get progressively worse, to the point, where it’s gonna be an issue to the quality of my life.
Or: is this what you see in most of your patients?
And if it is seeming to be worse than what you see … there’s some characteristics of some forms of Dementia that are reversible, very few, but a few.
And there are some forms of Dementia, that present with different symptoms, very few, but a few.
So it would be useful to people to differentiate one form of Dementia from another.
But the critical issue for you is not: Do you have Dementia? because somebody in a white coat told you.
The critical issue for you is: how do you live your life, if you seem to have this problem, remembering or forgetting, or you get confused, these …
Now, I think, we spend too much time just trying to distinguish if you have Alzheimer’s or not. I’ve had people come up to me and say:
“Thank God, I don’t have Dementia, I just have Alzheimer’s!”
And that’s the very same meaning, some come up to me and say:
“Thank God, I have Dementia, but not Alzheimer’s!”

You know, if you call somebody … somebody says to you:
“You’re not looking well today!” and three people tell you that throughout the day, by the end of the day you may even have a fever … and you certainly don’t feel well.

So, because everything is expressed by the brain, and the brain is always trying to figure out: How am I doing? – when it gets a lot of input that says: You got Alzheimer’s! You got Alzheimer’s! You got Alzheimer’s! you remember a lot of things you forget , ….. oh, there I go again, that must be another symptom!
Those are very …………………this is not an easy thing to answer. As you could tell from this rambling answer.

JACQUE:
Yes …

RICHARD:
Now, not about this question … it was a lot to think about …
It’s how you’re used to think: I just don’t think this is the true answer to it.

JACQUE:
That’s what it’s believed to be … and you just put it to shred …

RICHARD:
ha ha ha ha ha!
Well, this is for me … you’re right. I mean, I’m not questioning …

JACQUE:
That was the key, that was the key of the question, what people say to you, is …

RICHARD:
Well, you know …

JACQUE:
And what their statements are … and what it really is …

RICHARD:
I’m not sure now, that’s what it will become …
And that’s what I’m currently advocate, am speaking about, what’s happening to Dementia in general.
Don’t confuse these two words, Dementia and Alzheimer’s.
Because, there’s no National Dementia Association, but there’s a National Alzheimer’s Association. That’s which word is ringing out as a label of choice for people who forget more: Alzheimer’s.
Ah … and my heart goes out to people with who have confirmed Frontal Lobe Dementia or Ischemic Dementia or Lewy Body Dementia.
because nobody ever talks about those forms. They talk about Alzheimer’s.
And it would be particularly gracious if they would say: Alzheimer’s and other related dementias.
But in fact it is that other Dementias are not related to Alzheimer’s; but it is … related to Dementia.

Last year, when I went to the World Alzheimer’s Association’s conference, the International World Conference, I only heard the word Alzheimer’s twice. Everybody outside of the United States talked about dementia – not everybody, but there’s a few.
But most  countries become to focus and label on the concept of this form of Dementia, called Alzheimer’s.

Okay … I’m taking a breath!

.
JACQUE:

Now – how do you direct this book, the way it came about … the way it wasn’t intended
RICHARD:

Right. It wasn’t intentional.
No, I actually didn’t write a book. Now, again, if you call 125 pages of writing a book, it becomes a book.
Even though you wrote each one of these 125 pages, you didn’t say: Now, this is page 17 on my book.
It was, after I was diagnosed … I was so afraid, some big curtain was gonna fall down between me and the rest of the world, and I would become somebody else, and I wouldn’t even know it happened.
So I started to write about it: How did I do that day?
It has kind of a psychological bend to it. And then the next morning when I got up I would read it. And if I understood it, I would say: Well, there’s another day, when the curtain hasn’t fallen.

It sounds very simplistic, but that is how it was initially with this. I’ve written these, after about two years I had 200 of these excerpts, and I started to show them around to people, especially people with Dementia.
Because when I had showed it to them, they would agree and say: “You know, the other day it happened to me, too. You know, me too, the other day, you know, I’ve had that experience.”
You know, there’s some common theme, common reaction.
So, one day I took a bunch of them and I went to … I had a group for the early onset, and my spouse went to a group of people with early onset. And we went to the same building.
And I took these writings of mine and slide them under the door of the caregiver’s group. And then I went back to my group.
Well, they sent somebody down and they said:
“Have you more of these? Because our husbands aren’t psychologists, our husbands are not as verbally. It turns out we can see a lot of what you’re saying that you feel, we could see in our own husbands, but they don’t talk like that, like you do.”

So I showed them to more and more people, it got a wider circulation, and finally it got to a journal article, to a journal editor.
And they called me and asked, they might publish a couple of these, if I would be happy … so I started to publish.
I’m not a doc person, you know, that kind of person who writes a book every month about Alz. So when the publisher saw these articles he said: “Do you know this guy?”
She said: “Oh, yes, I just got a big stack of his writings here.”
So she sent them to the publisher.
And the publisher, literally out of the cold, at least out of the blue, dialed and said:
“Hey, we got your book, we want to publish your book!”
I said: “What book?”
They said: “You know, the book you’re writing, about what’s it like to have Alzheimer’s. It’s called: Alzheimer’s from the Inside Out. And you wrote the book.”
I said:
“That’s not a book! It doesn’t have a beginning, a middle and an end. It’s no plot to it. It’s just not like other’s books.”
“We’ll look through it and evaluate it.”

So they published the book, after about a year of editing and going back and forth.
Virtually the day after the book came out, somebody called me and said:
“Say, we see, you wrote a book here!”
“Yeah, that’s really not a book, you know, it’s just a collection of my writings.”
“Oh, wouldn’t you come out and talk about this?”
Oh, I was so flattered, I paid my way to fly to Chicago to talk about my book!
And I did that for about six months. And then, one day, somebody said to me:
“Let me give you 500 $, just to cover your expenses.”
“No, no, no, no! I’ve been just doing this, because to me it gives a lot, too, just talking about this!”

Well, that lasted about three weeks, then I learned I could do this for a living. I could contribute to my family. I’d have a job. This has really become the purpose, the driving, the defining purpose of my life right now.
It’s go around and share my experience. I don’t present myself as expert …. all I speak …
I’ve been diagnosed with dementia, probably of the Alzheimer’s type.
Now I know from talking to hundreds of people, there are some common feelings, common fears, some common responses, that many people have, that I have had, when you hear those words:
“Richard, you have dementia!”
I just gonna tell you about a couple of them. When they resonate in you, maybe you’re gonna understand your Loved One a little better.
And if they don’t fit, they don’t fit. Also … that’s part of my book, it’s how they seel it to the public.
They asked me if I wanted to publish it.
I said: “I don’t know, it’s just another book about Alz, that people have written.”
They said: “Well, you know, they’re mostly biographical, very personal stories about people’s lives.”
It’s about what my book is. It’s about my life, living with these symptoms of dementia, as opposed about me personally; that the fact I have dementia, and as a college professor I think about thinking, and I can tell funny stories once in a while about other people’s reactions.
In several years i became something of an advocate, they say, a strong advocate … although i have the symptoms of dementia ….
Yes – first of all – I feel with everybody who has dementia, as an obligation for everybody else who has dementia, to stand up and speak out about it!
Because the only way we’re gonna normalise ourselves is to find other people around us.
The only way for people who don’t have dementia, is to meet people who say:
“Yes, I have dementia!”
Yes, I have Arthritis! Yes, I have an artificial hand! Yes, I have this disability or that.
Although in the effect … it makes it a little more difficult for me to do this; I appreciate when people will help me with this or that.
But it doesn’t change who I am as a person.
I still like a good laugh. I still have an active sex life. I still like to eat well … I just forget more than other people do. I get confused when other people don’t get confused.

And so, I don’t know what the right term is. I’m an advocate in this sense, I’m speaking for other people. I advocate the fact that people don’t appreciate the fact, that people with dementia are whole human beings. They see us rather dying or fading away. I became an advocate for that principle.
I became an advocate for, I think, that the major organisations that are interested in dementia, are more interested in exploring it than they are in supporting the people who actually have dementia.
And after they’re done putting, eventually supporting their search for a cure, they’re interested in supporting caregivers, as most of those organisations began to be run by caregivers.
And because they don’t trust people with dementia being of sound minds, we’re not at anybody’s border directors, don’t work for those organisations.
But about here and there … they’re here and there for some … working shock experience.

When I was first diagnosed, I drove to my local Alzheimer’s chapter – my wife was still working – so one day I decided I would volunteer for the Alzheimer’s Association.
So I drove up there. I was still driving. I walked in and said:
“Hi, I’m Richard and I have Alzheimer’s. I’d like to volunteer here for you.”
They said:
“How did you get here? Where’s your caregiver?”
I said:
“Well, I don’t know where she is right now, she’s at work somewhere, but I drove here.”
“Ah – just a minute!”
About half the staff came out of the back .. it’s just nine years ago.
And they said:
“Oh, look, we have to tell your wife that you are here. Because, people with dementia just can’t go out by themselves!”

Now … that’s a view of dementia of people in the later stages of dementia. I honestly believe that anyone who has dementia at one point or another in their development of symptoms could have been just how I am. I’m not courageous. I’m not strong. I’m not different from other people who have dementia. I just happened to stumble in writing a book on it, that benefits from the misperception people have about people who write books, how they are smarter than other people – and they’re not.  But yes, I have become … because so few people stand up and speak out on this … you know, originally I went into the closet, too, I hid, for two years I didn’t tell anybody. I talked to my family. I didn’t tell my employer.
I was teaching at the university here, and I finally had to tell my employer, because, I asked them if I could have some support if I teach. And I won “Teacher of the Year” three years in a row.
I went to my dean and I said:
“I could use an assistant, graduate assistant. I got some assistant, but they’re all class. People from class there’s only so much you can ask them, when they’re taking the class. If you got a graduate assistant, you just could get them to everything you want (Richard laughs) … and I need some research done, filing, organisational things, that I can’t expect students to do.
And now, by the way, I was diagnosed with dementia. It’s really … not worth talking about, but – I just thought I should tell you that. It’s not contagious, but I did want you to know that.
He said:
“We’ll see what we can do for you, Richard.”

Well, the next day, when I showed up to teach, he was at my classroom door, keeping me from my duty. That’s how frightened people are about dementia. I just wanted you to know. It’s a chicken or egg argument. Why do people run into a closet and hide? Or are people driven in a closet by stories like I just told? It’s probably a little bit of both.

So my biggest disappointment so far – I’m only been speaking for a few, four years – made myself an advocate .. for four years – or three, that’s really I’m speaking.
I just don’t find a lot of Richard Taylors out there!
I find a lot of people who are former university people.
I know a lot of people who are engaged in life.
But it’s not yours … a life what it’s like to have Alzheimer’s. Because – everyone else seems to see the self-defining. I just kind of naturally responded to it, speaking out about it. And so I’m labeled as an advocate. I don’t see myself like a … you know … a political advocate or a social activist.

I can understand why that happens to people. I see a parallel between Alzheimer’s Dementia and the disability group. That really didn’t get moving until people with disabilities stood up and said: Don’t paying me any more, don’t see me as half a human being! Damnit, I have rights, and I want you to honor these rights!
But I also have disabilities. I want you to learn about us, and I need your help.

And that’s when the disability movement, I think, just went a giant step forward.

Oh, we’re not at that place yet with dementia. I think we will get there.
I think more and more people are beginning to say, that there’s some hiding in the closet, you know, I feel terrible, I was been diagnosed last week with dementia.
I don’t know what to do with that.
I’m crying, and it’s just about my life I don’t know. The back side of that is, I had a lady who lived in my street once,  who went home, and on her way home she went to her group or a club at her church.
And she said:
“I just heard this guy speak and I decided, I need to speak to everyone else about my dementia, because it’s not good for me, and I think it’s quite draining to everybody, if we hide this stuff.
And I just want you to know that I have Alzheimer’s. And now pass me the meal.”
Everyone had a discussing session. That afternoon the minister called the lady’s son and said:
“You know, we think it’s better when your Mom doesn’t come to the public meal!”
“Oh?!”
“As we recently learned, she has dementia.”

I mean – in a church – for heaven’s sake!

But that’s the kind of backdoor reaction – unexpected .- that you get!
So it’s no wonder we stand in the closet!

But the only way we can break that cycle, get rid of those stigmas, is to stand up and say to the culting club:
“I don’t know what this means, but you are my friends. You have told me when your sons are incarcerated in jail, or when you had a lump in your breast, and your husband turned out to be an alcoholic. Because that’s when friends share their lifes with each other. And a part of my life I share with you is, that my doctor has told me, that I have dementia, and it might be of the Alzheimer’s type. And I need my friends just as much as I always needed them. I don’t know if I need you in different ways yet. But some time when I happen to need you, I’d really appreciate it … to figure out … how best can we still be best and enabling, supporting friends.”

Unfortunately those conversations don’t happen.
Now I go around saying to people:
This ought to happen more often. This seems like a good thing to happen.

And whether it’s a caregiver who initiates it or a doctor who initiates it or people with dementia, they ought to happen more often.
So, to that extend I’m an advocate.

Oh! there’s much of a larger part to this question:
Tell us about the debate on the Health Care section…

JACQUE:
I’m gonna need to start another track!

RICHARD:
Am I talking too much …?

JACQUE:
No, that’s fine!

TAPE/TRACK 2 of the PHONE INTERVIEW:

RICHARD:
I cared for her just like it was before, and you didn’t marry them just because this was the first person you remembered what their name is.

JACQUE:
Right.

RICHARD:
But you know, we were changing all the time. Dementia changes people over a shorter period of time. Everybody knows her husband has changed, just since he was 21 years old. But it was over time, and sometimes you liked the changes and other times you didn’t. You still stayed committed to them.
And when you even at some times you didn’t even know you loved them – but you still stayed committed to them.
And you never thought of them as being less than a human being – or you maybe did, I don’t know.

But the point is: that’s what happens to people with dementia.
And so we feel abandoned.
We are treated like we’re not whole.

I personally believe we’re always whole. Everybody is always whole, up to the last breath of their lives they’re whole.
And the Hospice movement has figured that out, they’re advocates for that.
But somehow the rest of the world has – because they’re so afraid of death, they’re so afraid of change, they’re so afraid of losing what they come to understand and accept, that they make up all these myths and they treat us as we are not there. They knock at our door and if we don’t answer and say: “Hello!” the way we used to say: “Hello!” they’re gonna assume we’re not there.
“Nobody’s home, so what’s the sense to just hanging around here. He’s not gonna remember I was here. He gets mad and tells me I don’t call him enough. What’s the sense to comment on it.”

Oh, because he’s your husband – damnit! your son, your father, it’s your uncle!

Sometimes life doesn’t allow us to act like we’re twenty-five or thirty-five or forty-five, fifty-five, whatever.
That I can get worked out!
(Richard laughs)

Health care professionals would learn how to meet us and not only understand yet, but teaching people and coaching people – that that’s the truth.
The thing is we have nobody who speaks up for us in that sense.

My wife is a tremendous advocate for me, as her husband, and I’m very confident that she will always be my advocate.
But she’s not gonna be an advocate for all husbands who have dementia!
(Richard laughs)
It’s a personal thing with us.
And once you think that personal thing isn’t there, people just walk away either emotionally and/or physically from other people.

That’s why we have Memory Units. You know, not every country has Memory Units.

I always ask people when I got to speak:
“How many in the audience can’t wait to get old enough, so you’re gonna live with your children?”
Almost no one raises their hand.
And when I say:
“How many of you can’t wait to be old enough to have your parents to have your parents come to live with you?” nobody raises their hand.

But when you do that in Singapur or Japan or New Zealand, people raise their hands. It’s a part of their culture.
Now, old people in these countries aren’t any different from old people in America. Their cultures are a lot different. And they’re treated differently.
But just because they treat them differently doesn’t mean they are different.

So, one of the things or issues in Health Care is:
How do you treat people who have dementia?
What do you do for them?

Well, you don’t have a pill; there’s not much we can do with Health Care.

But there’s a lot they can do.
They can manage the case.
Your doctor can say to you:
“I’m gonna give you some news in a few minutes. Very difficult to hear. You’re not dying, don’t worry about that.
But understand that, because you have dementia, probably of the Alzheimer’s type, I’m still your doctor. I’m still here for your family to help you all get through this in a healthy way.
And so, I’m not just gonna give you a prescription for Aricept and say: Come back in a year!
Because I know how hard this is on my patients.
And there is such psychosocial  symptoms to this, fallout to this, and I feel the obligation as your health care professional to help you with that side of your health; to be your leader in getting you the information you need to make informed decisions about what you’re gonna do about your health, each other’s health.”

That’s not what people in the Health Care setting understand as their obligation.

In the media media is looking for simple answers to a very complicated question.
But they are bearer in many areas where they give us simple answers.

About the budget, how to spend money in very complicated areas.
And then they’re sensationalized:
“Let’s find the most famous person who has Alzheimer’s! Let’s find the one who wanders away and has Alzheimer’s, and let’s put that on the front page!”

We don’t go interview people who have dementia, because it’s a dull story.
from the media’s perspective, we’re  slower talkers, we talk differently, we can’t give you a one minute sound-bite like you use to get it from politicians – when they go interview people and they give them sound-bites. They go interview people who are caregivers or who understand what’s going on and can give sound-bites.
Research developers, and this in an area  that truly bothers me, research follows the dollars.
And the dollars follow what people believe that the dollars purchase, and if what they can purchase is something they need.
And what people need, is the belief, that they’re not gonna get dementia.
And if they do, there will be a pill there for them. So cure me! Or find a cure pill!

So the Alzheimer’s Association spends about 93% of its research dollars to cure pill research, bench research – what really doesn’t necessarily directly benefit people with dementia and their day to day problems.
It benefits people who don’t have dementia, and they want to be cured if they do catch it.
They say:
“Well, maybe we’ll find some little slow down on the progression.”
Now, I’m not sure, everybody wants a slow down when they get into later stages.
What we really want, and where’s no dollars, and where’s no returns to drug companies from the government or people who try to build a career, is in psycho-social research.
About what are the best practices; about how you maintain a successful marriage when you have dementia.
Let’s research that!
There are people who do a lot more successful than other people.
What’s the difference between those two couples?
Let’s begin to find those things out!
What’s the best way to deal with the issue of driving?
Should we let the State Police take care of it?
Should we let the doctors take care of it?
Should we wait until we get an accident?
What’s been successful in dealing with that?
What did you do?
What’s the research on that?
What’s the most successful way and the least successful way?

We don’t do psycho-social research to help the living, we do bench research to help people that aren’t even born yet, so if they do get dementia, they’re be cured of it. Or maybe they will become a vaccine to even keep them from getting it.

Look at the slogans of the National Alzheimer’s Association – there’s a “world without dementia”.
Though the fact of the matter is: we live in a world WITH dementia.
They’re not meeting the needs of other people, who have dementia.
So they take 80%of their budget and they spend it to create a world without dementia.

I think that’s what you do AFTER you met the needs of everybody who has dementia.
And those priorities are switched around.
Most people, most organisations, most governments – there’s money on behalf the drug companies, not to help you figure out what’s the purpose of your life.
Because there’s no cure you can get  what’s gonna help you to find a purpose to your life.
There’s a pill that can get you from crying, from sleeping too much or too little, and from hitting other people.
Those are specific things that pills could deal with.

But the psycho-social side of this disorder – and that’s what’s really all about, it’s about the psycho-social side – there’s no research on that, or very little, I should say, just a small group of people. But they are so small, and they exist not because of the government nor because of the Alzheimer’s Association. They exist because they are committed people, and their father had dementia, or their grandfather had dementia.

The debate in congress congress of course responds to the squeaky wheels.
And congress is looking for the simplest answer with the biggest payoff.
So, from my perspective, what’s happening in congress is: they’ve been convinced that this is the dementia crisis.
And it’s a public health crisis, it’s not the dementia crisis or the Alzheimer’s crisis.
This is about a health issue. But while we define it as just Alzheimer’s crisis, then we can just throw them more money to try to find a cure for it.
And then the crisis will go away.

Congress has done projections about how many baby boomers still are, what percentage of them probably have some form of dementia, and how much will it cost to take care of them.
How much will be the costs in missed work of their caregivers?
And how much will it cost our society and especially Medicare/Medicaid, and there’s a number out there for that.

So that has become the defining way of them responding to dementia:
How can we best spend our money to research and make this go away?

And they even say that right flat into people with dementia’s faces:
Oh, we’re gonna pay Medicare if it’s our only choice to spend money on this; so that we can save Medicare or we can save the deficit.

It’s very disappointing to see how the political system has responded to this.
None of this is a zero of one hundred sort of difference. But the degrees are so different, there’s so much more money to spend on cure, not psycho-social, there’s so much more money to spend on caregivers, than people, you know, speak for dementia.

There’s a big deal about respite care for caregivers. If caregivers reach a point where they really need a day off on living with someone with dementia.
And so, many speak up in purpose for that program: Now how about that program giving a respite to caregivers?
But most of the states that fund respite care have no standards for what respite care should be like.
And what should be the ratio in a respite care setting?
You have one person for every ten people there, or twenty? three?
Whatever levels of equity of people who come into respite care?

What kind of facility should they have?
What kind of obligations should they have towards individualizing the programs, rather than just say:
“From 10 – 11 we all exercise. We do the same exercise, and that exercise is just based on the most disabled person here.
And the fact that the rest of you are more able than that person is, in the physical sense, doesn’t make any difference to us.
Because we don’t have the staff to have individualized activity programs.
So we all do the same. One size fits all. And generally we’ll work with the person with the most severe disability. And because we have, just, as a rule, one hundred people we want to help, we focus on the person who needs the most help.”

But the room is full of other people, and this isn’t helping them.
But that’s what passes as respite care in many, many unities.

And we have a government that’s willing to fund those, because caregivers can get together, they put pressure on the government.
But demented people are not quite on that level of sophistication, they have. And because we have a progressive disorder, over time our leaderships just is going to lose its capacity to be leaders. And so, will we gonna get a new level of leaders?

Now, with that hope that somebody who doesn’t have dementia, is gonna enable  us and support us, and develop those kinds of organisations, but let us still be the leaders of them – that’s not happening.
No, I’m not very positive about the congress or about state legislators.
We’re so far behind. Most developed countries in the world now have an Alzheimer’s or dementia plan in place, a national strategy.

We just passed the law that gets HEW charged to come up with a plan.
But they didn’t even pass, and it has no money to support it. It just as well can come up with something in the next five years.
Most countries are already five years into that plan. We’re way, way behind.

Oh, my son just walked in. Yes, thank you. You can always close my back door.

JACQUE:
Would you say it was a mistake in the making? We’re talking to everyone else, but those who actually are experiencing the symptoms of Alzheimer’s dementia?

RICHARD:
And isn’t that, you know what I said at the very beginning

JACQUE:
Would you say

RICHARD:
It’s happening.
But why should people?
What use would it be?
What do you know?
You’re gonna forget, you get confused you don’t remember the doctor tomorrow anyway.
In the whole what is it what people learn about what it’s about, what didn’t happen to them.
Yes, and it prevails just an underlying mistrust in people’s competency.
And that’s true even on a much deeper level of incompetency, behind just: I can’t remember or I get confused.

It’s why the person who diagnosed you will ask where the power of attorney is.
As you know, you may be incompetent,  you wouldn’t have to sign for this.
Have we got it?
It’s one of the fundamental issues that we don’t trust people, and we’re unwilling to enable them.
Oh, there’s no question that there’s disability there, but there’s equally no question that there’s ability there.
And all you do is focus on the disability.

Just make that an obligation, make sure not to tell what happens to you.

“Yes – what about the rest of our lives?”
“We’ll just be happy nothing terrible happens to you!”
That’s not like us.
Oh, shit . there’s still 4 more questions!

JACQUE + RICHARD: both laugh

JACQUE:
The main thing I’m getting here on the debate: Was it in the health care, in the media, in development, in congress and in care giving – it’s everybody else who has the say. They’re not the people with the Alzheimer’s dementia. And so we’re doing it from the outside looking in, and we don’t have a clue to what we’re doing, and we’re screwing it up.
Would that be an accurate statement?

RICHARD:
Yeah! Yeah! But it’s

JACQUE:
We might make things worse for people who have it, and their families as well, because we’re not allowing them to maintain whatever independence they can have as long as they can.
So we’re fostering the dependence.

RICHARD:
Well, we always look at it from like they’re headed towards zero.

JACQUE:
Aha!

RICHARD:
We’re not it’s the wrong question to ask: How close to zero are you?
You’re different, and every time you’re at a different stage or level, it requires different kinds of support to enable you as much as you can be or used to be.
But you look at us as progressively worsening over time. It’s no wonder people get depressed when they hear it from the very recently

JACQUE:
Yeah.

RICHARD:
And it’s just it’s all relative judgment, you know, we hear and remember.
But the network, yes I think what we need is informed, social networks.
People with dementia need to initially be responsible in creating a form of social networks.
They have to be informed, because they have a disability, and people have to understand what the disability is, in order to because it’s a different kind of network.
We got somebody in the network who has this disability. And in order to be a supporting network, we have to understand what the disability is. So that obligates us to beat about it, talk about it, to know about it.
We can’t just say: “We just love you, Uncle Richard!”
Loving us is fine, but if you lost your right arm, and we’re gonna  pretend you have both arms, would that be a very supportive network?
So it’s real easy for us to adjust, because you lost your right arm, we can get you a phony baloney right arm, or we can do it for you.

But when you have cognitive deficits, they’re not as obvious to us. And we don’t understand, we’re gonna be afraid of ourselves, and so we either way rather don’t talk about it at all.

Or, we’ll just do everything for you.
And when we’re all off, somebody else can do everything for you.

Or they just stay away from you.
They’re afraid of you. I tell you that.

No …they’re not afraid of you – they’re afraid of embarrassing you. So they say to me.
“Why, we might ask you a question  you don’t know the answer.”
And so they will rather not ask me any question while being around me, because they would put me in a position like I soil myself, because I can’t remember your name.

Now, it’s my issue to learn that, yes, I’m gonna have some trouble with people’s names, and I try to make myself comfortable with that. Like it’s my issue to learn that I don’t have a lot of friends anymore; or I have only one eye.

But it’s your issue to learn: How can I still love this person?
How can I still be the best friend of this person, even though he only has one eye?
Does that change who he is?
Or does that change just what his needs are?
And so I should be informed about how I could provide those needs in a non- intrusive but supportive way.
And I think the people who are in the best position to do that initially are the people who have dementia.
Those are the people we stay away from.

JACQUE:
That’s why I put them on the top of my list of the resources.

RICHARD:
I bet, there is – and this is just a number I’m making up – but there is probably 25 support groups for caregivers for every 1 support group there is for people with dementia.
And people with dementia are not the first persons, people look to it and say:
“We got to have a support group for people with dementia.
And if we got time and we got the place and we can arrange it, we need to do something for caregivers, too.”

It’s the other way around how we look at it.
And it’s mostly caregivers who are leading these groups.
We don’t think first of the person with dementia, because we have in a sense written them off.
Because they’re on the blow.
Out of here.

And so, how can we most humanly support them, as they fade away?

I got to breath. Got to stop for a break. What time is it now?

JACQUE:
It’s 9:12. May I call you what do you think of you got some events coming up.

RICHARD:
Oh, maybe tomorrow night.

JACQUE:
Okay.

RICHARD:
Okay. When you listen to this – I don’t know how you make a head and a tail out of this. How this is useful for you and me. Because I’m pondering all over here, and these are not…

JACQUE:
Well, actually, you’ve been answering most of the questions. What you said

RICHARD:
Well, I’m stopping here; I’m sorry.

JACQUE:
Well, that’s alright! If anybody asks you any trouble asking these questions …my interview questions I’d say, well, there are these questions.

RICHARD: (laughs)
Call me in a while! Call me tomorrow about 8 h.

JACQUE:
Okay! Well, then!

RICHARD:
Thank you, Madam!

JACQUE:
Okay! Bye bye!

TAPE/TRACK 3 on the PHONE INTERVIEW

JACQUE:
How does Alzheimer’s affect your daily life and your relationships?

RICHARD:
Well, it’s there more and more to the point, where it really defines my daily life; not necessarily my relations yet. Sure, that’s inevitable.

I’m just so scared and unfocused. Just here at my desk my assistant stood next to me, my wife over my shoulder, and all three of us can’t keep me on track.
I just get up, wander around, and I’m real anxious, my sleeping has shifted, I usually go to bed about 5 AM now and get up about noon.
I just tried all sort of things to stop that from happening.
But I just had to go with the flow of it it’s very strange to me, you know. I’m still reasonably articulate. I know what’s happening, but I can’t do anything about it.

I can’t seem to do anything about it.

My attention span is so short, even when people are staying next to me, they say now:
“You have to get back and do this!” or “Do that!” or “What are you doing now?” –
I say: “Yes!”, and then just turn around and I’ll do something else, I’ll be somewhere else.

That’s very dismounting to me and very disrupting to me.
I haven’t been on the road about a month and a half, and I’m getting ready and go up, making a week of speeches in New York state, and I’m really anxious about that, about my capacity.
I just uhm you know, I have a world where I live in and a world of my advocacy about the worries with Alzheimer’s. And then I stay pretty much on top with that.
But when I get outside of that world and talk about other things, I don’t make as much sense as I used to talk about, or, you know, as I used to be.

And that’s my realization, everybody is increasingly worried about me now, because my distraction is going to the point where I sometimes just get up and walk out, and go somewhere, not necessarily due to a rational decision I made.
Sometimes when they find me, I don’t even know where I’m going, but I just walked somewhere, and that makes everybody a little uneasy about me (Richards laughs), and understandably so!
JACQUE:
Like when you walked tell us about that walk, that you had about your brother’s situation.

RICHARD:
Right. My granddaughters found me about seven hours later, looking like a lost street person, no shoes, lost my wallet, my glasses.
I have no idea what happened to me. I was miles away from my house. I thought everybody lives right on the edge right now. And I didn’t know what to do about that.
So, yes, it’s more and more intrusive into my life.
And the point where it’s beyond my ability to create a way, think of a new solutions that’s all scary to everybody.

JACQUE:
Does it seem to be prompted by worries, like about your brother?

RICHARD:
Yeah. Distraction, I don’t sleep well, or, you know, it’s like I’m right on the edge, and in case of my brother, even closer to the edge.
And I don’t think, even if he would have been miraculously cured of it, the situation would improve for me.
It kind of pushed myself beyond that now. But, yes, that’s what everybody liked to say.
It’s true because when we don’t have to deal with the issues, that my symptoms are getting more difficult to control, oh, we could just say:
“Well, you stand under a lot of stress right now, you know.”
Well, I am, but I’m not sure that necessarily if I would be blessed with a stress-less life right now, I would react to it as if it were a year ago or two years ago.

JACQUE:
Now, we were just talking about the wandering.

RICHARD:
Oh, well…

JACQUE:
Well, lot of people say: “He’s got Alzheimer’s, that’s why he’s wandering. “
Not because there’s any reason behind it, that instead of maybe walking an hour, they found you so far as five or seven hours from home…

RICHARD:
Yeah, right.

JACQUE:
And you didn’t know if you had fallen and lost your glasses then, at the run, you know, in front of, going across the street, either hurry up, or somebody robbed your wallet, and that’s the kind of scene everybody is scared of. And to what happened, why you didn’t have your shoes, or where are your shoes gone? your glasses and your wallet?

RICHARD:
I thought it was robbed out of the back of my pants.
Well, you see, i don’t know what the exact, the right word is.
But I think when people don’t have dementia, they’re about what other people do, always wondering.

It’s more a reflection of those folks, you of us, you know, because they can’t figure out where I’m going, it must just be aimlessly wandering.

JACQUE:
When in reality you’re trying to clear your head of whatever problem.

RICHARD:
To do something – now, it may not be the rational wander, f.e. they don’t get hit by cars. They cross streets, busy streets, they look both ways; sometimes they end up in risky situations. I think, they make I don’t want to say people make poor judgments, again, that’s a judgmental statement.  We make different judgments, based on attending to different details, you know, in a situation.

JACQUE:
Yeah.

RICHARD:
They may be seen as just stomping around, you know, the obvious.
But I think it’s an important distinction to make, we’re not we’re not making poor judgments. We’re making the best judgments that we can in any moment.
And that’s what everybody does.

JACQUE:
Yeah.

RICHARD:
What’s different from other people is:
We attempt to details around us. And we’re not consistent in how we do that. And as soon as people are not predictable, why that’s scary to other people. And so they put their labels on the others in order to explain.

JACQUE:
And I think that happens to people with dementia. And I think, wandering is an example of that.
It’s not why we’re zombies, it’s walking around with our hands out, so we can feel the wall, you know.
We’re going somewhere. We may forget where we’re going by the time we get there.
But it’s just another little paper cut that I see happen into people with dementia all the time.
People think the worst because they think the worst.

JACQUE:
Because they don’t see you as doing something rationally, because of the risk

RICHARD:
Right. I mean, how can anybody in their right mind be walking around in the middle of the night, looking for their brother?
Now, I actually think that people would say things like that.

JACQUE:
And you weren’t looking for your brother.

RICHARD:
No.

JACQUE:
You were trying to figure out what to do with all the doctors who had their own ideas of dealing with nobody in agreement. And it was hard on your brother.

RICHARD:
Now, you see, when people say: “You’re not in your right mind” – well, that implies that they are!
Instead of saying: wrong judgment, or different mind, or either different mind or we have a different view towards things, we’re responding differently to this situation.

Now I realize that we make some really bad judgments. But when we start saying:
“We make bad judgments”, it somehow covers up the good judgments that we do make from time to time. Or the half good judgments or the misunderstood  judgments.

JACQUE:
Well, there’s some worry about the time they found you. They don’t care what prompted this.

RICHARD:
Right, right. They’re all worked up and emotional about it and

JACQUE:
They’re just jumping at you:
“What in the Hooo got you there . woh – woh – woh! Where ‘d you go!”

RICHARD:
You know, they’re kind of stressing it around and they don’t know how to .
One time I wandered off, I did it when my family went on vacation in Hawaii.
And my son in law found me. He draw me in the van and he turned to me and he said:
“You know what this has done to your wife? Why do you keep doing this?”
And everybody in the car said:
“Jump on, Todd!”
And then my daughter in the back seat sais in a low voice, she said:
“Do you think he hears what we’re saying?”

(Richard laughs!)

JACQUE:
And you’re like: “Yeeees!”

RICHARD:
it isn’t because people are ignorant about it. It’s just I don’t know the right word just such a lack of appreciation of what’s happening on a real fundamental level. So sometimes they just say not the most appropriate things.

JACQUE:
What do you think is the quality talk of the doctors?

RICHARD:
Oh, yeah!

JACQUE:
I mean, they make you feel like you’re now you’re no longer Richard Taylor.

RICHARD:
Right.

JACQUE:
You’re somebody off Pluto. Your whole history is erased. Everything that’s happened to you in the past has nothing to do with you today.

RICHARD:
Yeah.

JACQUE:
You know, as if you were no more Richard. Yeah, you’re a person!

RICHARD:
And I’m scared in my dale, when they say things like that.

(Richard laughs!)

JACQUE:
Then you go: “It’s the doctor who’s off Pluto – not me!”

RICHARD:
You know, that’s what you want to do, is just dang around, blame the other person – but, you know…

JACQUE:
Well, doctors don’t like me.
I call them menacepholics…

(Richard + Jacque laugh!)

RICHARD:
They’re reacting, you know, like we’re actually not there. It doesn’t help you, it may help with the immediate feelings of frustration you have. But they ain’t gonna change.

JACQUE:
Yeah, it doesn’t. So I’m just going there where I feel it needs to be done, and when it walks out better than I expected, so I go back, taking her back.
They thought she was gonna die before the end of 2009.
And she just gets herself from the front of the bed in to the wheelchair, and she’s feeding herself, and she’s looking at puzzle books, and she’s watching TV, and gets herself around in the wheelchair and is doing all kinds of stuff…

RICHARD:
Yeah, you know, she’s an exception to their rules.

JACQUE:
She wasn’t an exception to begin with. They just got everything wrong…

RICHARD:
People may just have some wrong assumptions about people and about this process of dementia.

JACQUE:
Mhm. Yeah. I’d tell you about it. First day there was just everyday stuff, like everybody else has, you know, or whatever different situation they just say so. But after a while they ended up a whole lot better.

And it has little to do with dementia. Dementia makes it worse, complicates it, makes it harder to her to speak. The communication is harder. But oh, she is – when she was listening to you the other night, she tells her son:
“He knows what he’s talking about!”

RICHARD:
Yeah, I worked that into your Mom I mean that’s an amazing occurrence!

JACQUE:
Yeah! because half of what she says is not clear.

RICHARD:
Right, right.

JACQUE:
Mhm. Okay, let’s move right along.

Do you say it affects people differently, and what symptoms do you deal with – you talked about that. And how you handle them on a day to day basis?

RICHARD:
Well, we’re always you know, there’s not a permanent solution to a system.
Because symptoms come and go. Symptoms interact with each other. They’re backed up by emotions.
Well, you just have to be prepared that this is the way your life is gonna be. It’s constantly adjusting dealing with
I just broke in little pieces, when I first was diagnosed.
I was so scared to death, I was just emotionally destroyed by the diagnosis.
And so, I just I couldn’t focus. I had to write everything down. I forgot, and I just had piles and piles and piles of paper and little notes that might help.

And then, when I put myself together emotionally, I forgot, survived.
You know, I can’t have fifty pieces of paper at the end of the day.
I got myself a computer program, you know, a To Do list kind of program, and I used it as a map. And that worked for me very well a couple of years.

And then I found myself that I wasn’t using it, I forgot to go to it.

And I started with the notes again. Because that was the easiest thing, there’s always a pencil and paper lying around.

JACQUE:
Mhm. And you could write right there.

RICHARD:
Yeah. And then I got myself an alarm program. That was an alarm and I put in on the computer. And every hour, you know, the alarm went on with an awful noise, and in case I turned it off, flashing on my computer screen with a word:
“Have you checked your To Do list?”
And so, that worked for me for a while, got my attention, got me focused.

And then, after a while, I just came in, pushed the button and walked away from it!

(Richard laughs!)

JACQUE:
Push SNOOZE, huh!

RICHARD:
And so there I knocked off all kinds of computer programs.
Now I’m just back to little pieces of paper. I talk to people on the phone, say:
“Wait a minute, I gonna write that down.”
So I scribble some up, I must have a hundred pieces of paper.

JACQUE:
How do you find the right one. When I called up you didn’t know where it was?

RICHARD:
Yeah, I don’t know how I do. It just happened to be on top of the pile.

(Richard + Jacque laugh!)

JACQUE:
She’s like: He’s a lot sharper than he says:
And she’s impressed.
And so far, her son on line:
“He’s one sharp dude!”
He was impressed.
He was listening to these recordings, he played it at work.

RICHARD:
You know, when people say: “Boy, is he sharp!” what they’re saying, was:
“Yeah, I thought he would be a lot worse than that. That was my expectation.”

JACQUE:
Well, I mean, you’re talking about a lot of stuff!

RICHARD:
Well, I don’t see myself as being sharp. I just talk a lot about my life. And I think lot of what I said makes sense to other people. And so they confuse that, in order to make themselves feel good, with the fact  that they haven’t already thought of it.

JACQUE:
Well, that’s like people say, they’re not watching the news. You’re not paying attention. You’re not getting information on what’s going on.
And, you know, they keep saying: What’s the matter to deal with you? With Alzheimer’s you know, Alzheimer’s.org or, you know, the NAPA, you know, that National Alzheimer’s Protection Act. or something..

Then you knew what it was. You knew about it. And you are able to speak about it. And you’re sharp in research and development.
And in media. In health care. And I have to give up here and look at the rest of it. Yeah, okay. You’ve said congress. Okay. And then caregivers. And you have, too, addressed the different debates that are going on. And how you did agree with them and how . or why.

RICHARD:
You see, that’s my life.

JACQUE:
Yeah.

RICHARD:
You know, if someone who came just from Egypt, I’m sure, right now he could stand up and talk about Egypt for hours and hours and hours.

JACQUE:
Mhm.

RICHARD:
Because that’s their life..

JACQUE:
Yeah.

RICHARD:
And everybody else would say: Gosh, they are smart! you know. I didn’t think about Egypt or even know about it.
They have an insight to things that I had not even thought about. And it made sense what they thought about them.

JACQUE:
Mhm. Right. It’s like, you know, people think that you, like you have Alzheimer’s, they’re not paying attention to the (damn) thing.. Even if they relate to you, you know, it’s just something else where the other people are watching, or the family members, or the caregivers. We watch, but you don’t and embedding multi slides.

RICHARD:
You know, people don’t engage us. You know, the conversations just get simpler and simpler.
Because they’re afraid we’ll be embarrassed, or we won’t know the answer or make them feel bad or us feel bad.
So, we don’t have conversations, we don’t say to somebody:
“Oh, how you feel about that?”

JACQUE:
Mhm. Show them about these interview questions and let them play interview.
Yeah.
There’s a lot more going on upstairs in Richard Taylor than they may give you credit..

RICHARD:
Yeah.

JACQUE:
They’ll see a whole lot more…

RICHARD:
I’m just scatting around!

(Richard laughs!)

JACQUE:
Well, you actually got Mom excited!
Because when Mama said, that you knew what you’re talking about – she was going with all the stuff you were talking about. And she has made that comment, she was listening and she understood.

RICHARD:
Yeah, you know…

JACQUE:
She said there was more inside your brain…

RICHARD:
Yeah, these has been one of these Aha! moments.

JACQUE:
Yes, she watches a lot of TV, too.
Not so much news, but she watched this one show You’re helping Dr. Richard and Cindy . As the doctor talked to her about how
talked about natural measures and some of the science stuff.
And
And it’s an hour show.

And then she watched some other stuff: “Promised Land” and “Sir Thomas, FBI”, then “Doc” “Doctor Quince”…

RICHARD:
Now, these are mostly re-runs of shows, and old shows, although they’re enjoyed by all kinds of people.
Well, there’s room for that kind of stuff – but it shouldn’t be what your life is.

JACQUE:
Yeah.

RICHARD:
It’s not enough to fill your life out.

JACQUE:
Yeah.

RICHARD:
That’s what they have in their lives, that is their lives.

JACQUE:
Yes, we’re both with some music of Cleveland …

We just like the music!

……………………………………..

(Richard laughs)

Now, it’s fine, I have those I like the lyrics

Okay, we gonna move on here.

How do people relate to you since your diagnosis?
You covered some of this.
Since your diagnosis, have they changed?
And if so, how?
And how does that affect you as a couple?

You wrote about some of this in your book.

RICHARD:
Yeah, you know, people understand I miss a lot of what you do, and they’re a little paternalistic. They’re well intended, but really paternalistic.

“Let me help you with that! here, let me help you with that!”
But they say it in a way as they would say it to someone who is 130 years old and was crippled with Arthritis.

Often they don’t even say it, they don’t ask you – they just do it for you.

And sometimes they say that, and they tell you::
“Don’t worry, I’ll do this anyway. I’ll take care of this for you. I can take care of this.”

Well, it wasn’t a question, if you could take care of it. The question is, if I can take care of it?
Or can your mother or my brother take care?
Nobody ever gives you that option.

JACQUE:
Yeah. And I found myself doing some of that myself.

RICHARD:
Yeah, it’s just natural. It’s how did you know to draw the line, because we’re not used to draw this line.
You know, children are always thinking the best of them, always overestimating their abilities.
Because they want to share with you.
And when we’re teaching a child to walk, and they fall down we don’t pick that child up and put it in a wheelchair and then run to that chart and write a fall risk.

JACQUE:
Yeah.

RICHARD:
We pick them right up and we say:
“Well, that’s okay, that’s okay, I’m right here for you. I know now that I have to walk closer to you or hold both of your hands for a while. I’ve learned from this. But I really want you to walk on your own. And I think, you do, too.”

And so, that’s how I treat the situation. But when an older person falls down or somebody with Alzheimer’s falls down, They just assume: well, there’s proof, another part of you has passed. And I now in the name of safety pull you out of that risk.

JACQUE:
But have you forgotten how to walk?

RICHARD:
Yeah.

JACQUE:
When you haven’t, you really did trip over something on the floor.

RICHARD:
Well, even if you made this fall because of dementia. it’s not the reason to give up from let me walk anymore.
I tell people, I never did achieve a risk less life before I was diiagnosed, and it shouldn’t it’s not your responsibility that I live a risk less life after I’ve been diagnosed.

The idea is to flush out all risk on your life, because that’s what people worry about. They worry about the physical things. Because they’ve almost written me off intellectually and emotionally, so they can take care of me physically.

And they don’t realize that they’re over-attending my physical needs.
Essentially, what they’re doing is, limiting your emotional satisfaction and involvement in life.

I should have written that down!

JACQUE:
Well, we have it on tape!

RICHARD:
Well, as you can hear, we can still say these great things!

(Richard laughs!)

It just amazes me.
I don’t have the capacity I used to have, I just think about things.
Much of it is just: I open my mouth and out it comes.

JACQUE:
Yeah, I understand.

RICHARD:
I can’t remember, tell the question, what’s the answer to it?

JACQUE:
Well, we talked about people since your diagnosis, as they see you somehow…

RICHARD:
Yeah. There are little holes, they’re sympathetic, more than empathetic. Most of them don’t feel empathetic with me, because I can get so scary to people, that empathize, you know, being next to your feelings because they’re so afraid by what’s happening to them, that being family…

JACQUE:
You said they don’t want  to think about it.

RICHARD:
Yeah, right.

JACQUE:
Then, when they sympathize, then you are you, and they are them. They push it out, they can’t be you down the road.

RICHARD:
Because, when they think about it, they think about in terms of: he is dying.

So it’s no wonder people don’t want to sit around you.
They don’t want to talk about it.
Somebody said: whatever I try to talk about with family, their family sais – they just turned it down to conversation.
I just can’t handle it, so I don’t want to deal with this right now.

Well, when will you go to deal with it? You thought we can turn this around instead of it being a downer – it’s just an admission of where life is right now for somebody we love.

JACQUE:
Yeah.
And if they really did deal with it and they started looking at it – where are you? Not down there.

RICHARD:
Right.

JACQUE:
Well – but this is his job, and I put hands up for taking this

RICHARDS:
Yeah, when I went to the Hospice – How can you do that?
How can you let people get close to you – and they are all gonna die!

Well, we’re all gonna die, for heaven’s sakes!
JACQUE:
Mhm.

RICHARD:
And I will. And that’s a real difficult thing for people to understand and accept, deep down inside – yeah, they do actually understand everybody dies. But it’s scary, you know, I don’t want to think about it, nor want to talk about it nor I want to deal with it – though it’s part of our own life.

We’re around people all the time who’re dying.
But people who do know, who stay in the Hospice movement for 3 or 4 years as volunteers, they get it.

JACQUE:
Yeah.

RICHARD:
They love it!
Because they see this as life affirming, not end of life denying.

Oh what’s next?

JACQUE:
Okay, we got a little bit more time.
Okay…

What advice would you give family members and care givers?
What do you consider Do’s and Don’ts on caregiving?

Who’s seeking funding for research for a cure – congress, media, health care?

A lot of this you’ve already covered, really.

RICHARD:
Oh, you know, family always cares for me, though they’re like: “Why he just does this?”

What can I say to make them do that?
Or how can I make them feel happier, not afraid or whatever it is?
And I say to them:
You know, I don’t know your husband or wife, I’m not close enough or familiar enough to know what would be appropriate words.
But I hope that you by listening to me have a different appreciation of the person you’re taking care of, or the person you love. And if you do, if you see them as a whole living person rather than as half empty, dying soul who’s in pain and suffering.

I have enough confidence in you as a human being and certainly as someone who loves this person, you’ll find the right words.

JACQUE:
Yeah.

RICHARD:
I can’t put words in your mouth.

JACQUE:
Right.

RICHARD:
I mean, I could. But you say them, it would be my words, not yours.

JACQUE:
Yeah.

RICHARD:
And so, what I will ask you to do, is to think about the situation rather than the search for the right words to get, what you want to happen – it may be the whole thing that you don’t want to happen.

JACQUE:
They try to manipulate rather than….

RICHARD:
Yeah. They may be the most well intended person in the world.

JACQUE:
Yeah.
RICHARD:
We just have no you know, when little girls are playing dolls, they would say:
Well, this one has a broken arm. And this one may have Alzheimer’s.

You know, we have no way of preparing ourselves for this.
So we have no understanding of it at all..
It’s so painful for us, that we’re just in almost every way we can think of, working for ways not to deal with this.

And this works out some really bizarre things, when you think about it.

I had a lady in church, you know, on our way home she said:
“I want you to come up to my apartment!”
I started to walk up with her.
“Unexpectedly”, she said, “there was my son coming over here from California. He said, he was home and was so worried up about my safety. And he walked in here and he took out every piece of furniture that doesn’t weigh more than 400 lbs and gave it away. He pushed off the rest of the furniture against the 4 walls, rolled up the rugs on the floor, and as he walked out of the door to go back, he turned to me and said:
“I feel a whole lot better now, because i know you’re safe!”

And she said to me:
“Does this look like a home, Richard? I got people over here yesterday for a brunch, and we had to holler at each other, because the furniture is so far apart from each other.”

People are so well intended, but this is an area where intention is just not enough.

JACQUE:
Kind of mindless attempt.

RICHARD:
Well, they’re always mixed. And you know, as you don’t have actually a psychologist in your house working it’s easy to mix up messages..

So, you have just to talk about, you know, this stuff, and you ought to think about, because for you, thinking about is really confirmation of all your prejudices, of your worst nightmares, of all the myths and stigmas, all those things are wearing you off, while you’re trying to think of this in some objective way.
And it’s these things you can’t seem to stop from happening, because you’re stuck, you just stop to talk of them.
And you think about some absolute truths:
Mommie, it’s true, yes, I did this.
Am I wandering? Yes, that’s true.

And so you may come up with just a One size fits All solution, and you don’t want to talk about any further events, when this happens…

You just draw your own conclusion; I don’t want this to happen again, but on the other hand, I don’t want my freedom restricted.

And isn’t there some middle ground, and can’t we think about this creatively together?
And can I feel a positive: can we all work as a team in this?

“No, it’s just gone too far.”

Well, it probably has but it’s now the restrictions which go too far.

You know, the average age of diagnosis to people is 72.
Well, that’s because we just sit and lock folks.
Not for necessarily the   symptoms, but with the fact that there are laws in dealing with this disability.
And I don’t want to people just say: they already got into this, the myths and stigmas.
Your mother is not gonna tell you:
“I worry I have Alzheimer’s”.
Your mother is gonna worry to herself about it.
And you’re gonna worry to yourself about it.
You’re both gonna see symptoms in your Mom, but you’re not gonna sit down and lovingly say:

“I saw this, Mom, and I really don’t know what it means medically. But I have some ideas about how I can help you, so this doesn’t become a problem for you in your life, or it’s manageable, or you know, I’m here for you” – whatever supportive words you can say.

Because we didn’t have that kind of relationship in the past with our mothers or our fathers, we seem to find it’ difficult to do it.

While we expose our bosoms to them and they just walk away from us, like your Momma used to do it, you know.
And I say to people:
“You got to have change. Well, if you lost your hand, you cannot say: Oh, let’s just pretend like it didn’t happen.
Because that’s the way we dealt with so many tremendous crisis now, but we got through them.
We’re all here still you know, we’ve had so much emotional pain and suffering from that. That’s just something we don’t talk about as a family.
Now this is not what we still need from each other.
Because we got to preach your health…

JACQUE:
This is a good one.

RICHARD:
No, my son couldn’t stand that message.

(Richard + Jacque laugh!)

I don’t know if anybody cares, but

JACQUE:
Yeah. okay, we gonna go. We got a lot.

RICHARD:
You’re gonna do it, all this stuff, you know, listen to it  or write and publish it. Or are you going…

JACQUE:
What I’m gonna do I’m going to do an audio file and put it in a newsletter.
I’m gonna see if I can put it on Facebook.
I’m not sure if I can put it there in audio.

RICHARD:
No, I’m not either.

JACQUE:
And I’m gonna see, if we can and how to deal, I was told, I could even put it on YouTube. I wanna get the word out, because I initially thought:
If we start listening to the people who have dementia or Alzheimer’s or whatever, we may come up with better meanings of handling this situation.

RICHARD:
Yes, this is such an individualized, you know, everyone who’s got liver cancer, has some of the same issues. He deals and has the same symptomatology and progression.

But everyone who has dementia, has a different form of it, a different progression of it, it’s mixed in with the family history and dynamic how we deal with crisis.
It’s mixed in with their personalities.
I’m sure that’s true with cancer, too. But it’s much more…

JACQUE:
more individualized?

RICHARD:
Yeah, it’s much more individualized, so there are just not these easy answers. The people…

JACQUE:
So I should just listen to her more?

RICHARD:
Yeah!

JACQUE:
and pay attention to her more, and sometimes there’s been saying that she has said,  you know, what enlightens them.

RICHARD:
I’m surprised, because you haven’t to be enlightened to handle it.

JACQUE:
Well, there were things oh, I should try …to recall what it was.
Oh when a person keeps repeating things, the same story again and again I’ve had people who have done that. And you’d made a statement:
“I know you want to keep us reminiscing over the past, but I want to be in the present!”
That’s not exactly your words, but it was something to that effect.

RICHARD:
You know, in effect, the fact that they keep asking me these questions over and over again, tells you that they’re struggling to stay in today, in the moment.

I may have forgotten what my son’s name is and I’m not asking him over and over again. But I ask you when we’re going to the doctor, or where we’re going now? What’s this attorney said?

It’s just we can’t turn the brain off from the present.. My brain makes it more difficult for us to understand….

JACQUE:
Now, it turns out it doesn’t make sense either.

RICHARD:
Right.

JACQUE:
Is there anything else you’d like to say that we haven’t covered?

RICHARD:
Oh my God, it was gone for hours no wonder what time it is

(Richard + Jacque laugh)

I’m just assuming we got almost everything there was to cover.

JACQUE:
Well, I think, a lot of it was thinking even throughout, you covered a lot of it, you know, the health care, to start the listening to patients instead of coming up with their own conclusions, and the suffering and the pain in the first place.

Sometimes you got to say:
“I know that I don’t know.”

RICHARD:
Yeah..

JACQUE:
And when you say that I don’t know it’s furry I don’t have all the answers.

RICHARD:
Right. It takes a big burden off you.

JACQUE:
Yeah. And other people themselves, they go: oh, okay, oh, maybe I can ask. Maybe have to pay them closer attention.
Maybe in reading some of the different disabilities that people may have, Alzheimer’s or some form of dementia, maybe I can learn something, when I take care of you, that particular situation, and it helps me to think something

RICHARD:
I didn’t hear what you just said. I happened to nod off.
I can’t think of anything else to do.
I don’t know what else to do. And I said the one thing you should not to, is just give up trying.

JACQUE:
Yeah.

RICHARD:
What you’re saying to me: I can’t think of anything more, and I don’t know if I can or not.
But that’s not the question.
If you feel like you’re blocked, maybe you need to talk to somebody else.

JACQUE:
Yeah.

RICHARD:
because if you don’t, you just gonna keep saying, just like I do:
I don’t know what to do!
I don’t know what to do!
I don’t know what to do!

And if I’m blocked, I wander away. And when you are blocked, you may wander off, too!

But if you are too consumed by the odds or the fact that you cant’s think like me, it doesn’t serve either one of us.

You ought to come into a position to adjust to this really, you and me.

JACQUE:
Yeah. And sometimes I think, when we just take what the doctors have been saying all along and take it at face value, they’re gonna get you worse. I think, they’re trying to get you worse, because it doesn’t
And they’re  saying self fulfilling prophecy and it blows up in your face, and that’s from what the real frustration comes.

RICHARD:
I don’t know how many people have told me, you know, to make a number of suggestions I want to ask my doctor.
And I’ll say to them:
“Oh, when we’re gonna see them?”
They say: “Oh, you know, he’s busy. You can’t get in until April.”
And so I say:
“Don’t wait. These are real important questions. You ought to find a doctor that you can get in before April.”

But I’m worried to that, as when you walk out the doctor’s office, you would have more questions, than when you walked in to the place.
Because many or all of the answers are ultimately within you.

JACQUE:
Exactly.

RICHARD:
The doctor is gonna say:
Well, you know, if only he left his right arm upstairs his right leg, he’s sure happy that it works – and sure enough it worked!
What a miracle working!
That’s why they went to medical school to learn those kinds of manipulations.
But there’s no manipulation to people with dementia.

JACQUE:
Yeah, when you go home, then you find out it didn’t work and you better headed right back in.
He must have done something right!

RICHARD:
Well, you know, when I went to the doctor, and I waited this long, and this is what he had to tell me – instead of saying:
“Oh, maybe that wasn’t the best strategy in the world for me, because this really didn’t serve me. And it didn’t serve the person I’m taking care of – I’ll think of a different way to deal with this.”

Yeah, I really enjoyed this chat!

JACQUE:
You want to say hello to him? You can! You want to say: Hi, Richard!

MOM:
Hello!

RICHARD:
Well, I’ll say “Hello” back before you even say Hello to me.

(Richard laughs)

Yeah, well, your Mom is in good spirits, whatever special relations you have to each other ..

 

 

JACQUE:

Yes, that’s true.

—————————————————————————————————-

 

Transcription of audio tapes in August 2011

Edited: December 2012

 

Bettina Hackel

Switzerland

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: