Judith Fox Turns A Close-Up Lens On Alzheimer's

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After Obama Visit, Assessing U.S.-China Relations

TERRY GROSS, host:

This is FRESH AIR. I'm Terry Gross. My guest, Orville Schell, was in China this
week during President Obama's visit. Schell has witnessed immense changes in
China over the decades. Now, he says, as governments across the West have
become increasingly bogged down, trying to fix a broken economy, China is
veritably humming with energy, money, plans, leadership and forward motion,
while the West seems paralyzed. He warns that Americans need to understand how
China has changed if we want to understand their impact on our economy and on
climate change.

Schell has written nine books about China and used to cover China for the New
Yorker. He's the former dean of the graduate school of journalism at the
University of California, Berkeley. Now he directs the Center on U.S.-China
Relations at the Asia Society in New York, where he's focused on issues of
energy and global climate change. Yesterday he went to the NPR bureau in
Beijing to record our interview.

Orville Schell, welcome back to FRESH AIR. What do you think was the most
interesting outcome of the summit?

Mr. ORVILLE SCHELL (Asia Society): Well, I think perhaps the most interesting
thing was that it was – it was a rather, I would say, flat summit. There was
not a tremendous amount of sort of emotional heat from it. The city didn't get
too disturbed. There was traffic, to be sure, because streets were closed down,
but often when leaders come to China or when the Olympic Games happen or
something of importance, the city goes into a kind of a paroxysm. You know,
there are no kids in the street waving flags. It sort of came and went without
making a tremendous disturbance, and I think one might say…

GROSS: What does that mean?

Mr. SCHELL: Yeah, well, that's – I think actually it means in a curious way
that China is becoming something more of a normal country and not quite so much
in awe of or not quite so willing to put itself out when big accounts from afar
come into town. And I think that speaks of a level playing field and a new kind
of equality the Chinese are beginning to feel when, you know, the biggest dog
on the block comes in, and it's sort of business as usual. I think that's quite
a big change.

GROSS: Since you're focusing on climate change and clean energy, let's talk
about that. Why do you think it's really important that the United States and
China work together in some way, reach some kind of agreements on climate
change and clean energy?

Mr. SCHELL: Well, you know, China and the U.S. are both extremely well-endowed
with coal, and about 70 percent of China's electrical power comes from coal;
about 50 percent of ours does. And we are also the two largest emitters of
greenhouse gases in the world, and together the two countries emit, oh, 40-odd
percent. That's a lot.

So what that means is that without the U.S. and China on board, some kind of a
climate regime, there will be no remedy, and it doesn't really matter what
anybody else does. And the reality of the matter is that even though Clinton
signed the Kyoto protocols, Bush never allowed them to be ratified, and they
wouldn't have been. The Congress never would have ratified them. So we're not
in the game. And China is a developing country, and that means that they too
are really not in the game in the sense that they had to set defined limits on
their carbon emission. So you know, Copenhagen has…

GROSS: You're saying because they're considered a developing country, they did
not have to set limits on carbon emissions?

Mr. SCHELL: That's right, and this is a huge division, and this is really what
all of the arguments that are leading up to Copenhagen center around, the
division between a developed country, the United States, Europe, etc., Japan,
and developing countries, which have produced, historically, far less
greenhouse gases than developed countries. And in the case of China, this is
roughly one-quarter the amount that the Americans have produced historically,
even though the population of China is much larger. It also means that the
average Chinese produces more than four times less greenhouse gas per year than
the average American.

So logically there should be a distinction because the Chinese have every
right, as every developing country does, to live as well as Americans. But the
distinction between these two kinds of obligations, where we and Europe are
obliged to set absolute limits on our emissions while developing countries
don't have to, is what has riled everybody up, and this is the problem in
Congress.

Congress is saying, well, how can we have a solution without China setting
absolute limits, defined limits, and why should we penalize ourselves and join
a climate regime and let China run free when all our jobs and factories will go
off to China and just compound our economic crisis? So this is the dilemma that
we are now in.

GROSS: So the meeting in Copenhagen to start a new framework for a climate
change agreement is going to happen in December because the Kyoto protocol
expires in 2012. So what do you think the odds are that there will be some kind
of agreement that China will also, like the U.S., have to respect certain
limits on carbon emissions?

Mr. SCHELL: Well, you know, it's very interesting. A lot of environmentalists
just heaved this sigh of great despair when Obama announced in Singapore that
we simply couldn't meet our obligations in Copenhagen and there would probably
be no treaty. But there is a kind of a curious thing that happened since then.

It's kind of a relaxation, and this argument that was going nowhere between
developed and developing countries sort of just expired, and then people
started talking in a very different way, and President Hu and President Obama
did commit themselves not to sign the treaty, which I don't think they could
ever agree on, but to coming up with some sort of arrangement with some agreed-
upon limit.

So in a curious way we may find that even though the old framework collapsed,
that this may start discussions in a different way, without the pressure of the
deadline in December, and something may actually come out of them.

GROSS: So you're talking about some kind of bilateral agreement between China
and the U.S., as opposed to a larger international framework like the one
that's going to be started in Copenhagen.

Mr. SCHELL: Well, if the U.S. and China could come together with some major new
breakthrough agreement, it would inspire every country in the world, and I
think then, you know, Europe's already on board, Japan, Korea. They've all made
very, very strong commitments, and so I think this would turn around rather
rapidly.

But we are the two countries blocking the way, and the U.S. particularly,
because the U.S. has no climate bill. The Senate won't pass it. And so Obama
arrived here in China really with his hands tied behind his back. He didn't
know what he could offer because he didn't have a bill.

So I think this too has made Obama feel a certain kind of weakness. He came
here and he didn't have a Senate bill on climate change. He didn't have any
money to give. He had really no remedies to offer. All he had was his very fine
rhetoric. and I think China perceived that and felt that, and that's a very
kind of new dynamic between China and the United States.

GROSS: So in China, President Hu and President Obama announced several new
clean energy initiatives. There's a clean energy research center that will be
jointly sponsored by the U.S. and China; U.S.-China electric vehicles
initiative; a U.S.-China energy efficiency action plan. Do you think these
things mean anything, or are they just kind of nice things to put on paper that
won't amount to anything?

Mr. SCHELL: Well, you know, yesterday I went to a meeting between the Chinese
and the American sides. Gary Locke, the secretary of commerce, Steve Chu, the
secretary of energy, and their counterparts in the Ministry of Science and
Technology here in China and other officials. And you know, it was sort of the
prelude to all of these agreements that they signed.

There was a lot of, I think, interest, a lot of excitement, but the truth be
told, when all was said and done, they sort of swept the floor and they picked
up everything they possibly could and threw them into these various baskets
that you've mentioned, on clean energy, on electric cars, on climate change,
coal.

So they didn't put a lot of money into them. This new research institute that
they agreed to undertake had already been agreed to, and they'd only put $15
million, and now they put $150 million from public and private sources, and
each side would put in half. But you know, in the grand scheme of things,
that's not much money at all.

So again, the U.S. is kind of crippled. Just as Obama wants to sort of take
leadership, he hasn't got any money, and no one in the U.S. Congress is about
to earmark any money for China, because China is perceived as the person with
all the money. You know, they're loaning us money. They own almost a trillion
dollars of our T-bills. So it's a very complicated, new sort of dynamic that
we're trying to work out between these two countries, where we're trying to
find sort of a new angle or repose, and it's difficult.

GROSS: You know, even if there was more money to put into these joint energy
initiatives, do you think that the United States and China would really feel
comfortable collaborating on clean car initiatives and things like that?
Because the U.S. and China are very competitive in terms of business. So what
are the odds that we'd want to share American business ideas and American new
technology ideas with our competitor?

Mr. SCHELL: Well, one could ask that the other way too. Does China want to give
away their business secrets to us? I mean, one of the things you just feel so
powerfully when you're here is that this is now a two-way street. You go to
these cities that you may never heard the names of, Dalian or Chengdu or
Tianjin, and you go through these Silicon-Valley-like parks and start-ups and
laboratories, and it's really stunning, and you realize that there's an awful
lot going on here and that it isn't simply a question of China taking our
technology and pirating it and stealing it.

They have a lot themselves, and it's going to be a very short while before we
will have – we may be competitors, but the competition will be going both ways,
and the truth is that I think if the United States cannot understand the terms
of the game have changed and do that very quickly and try to seek some more
collaborative relationship with China, we may miss the opportunity when the
Chinese then find it no longer interesting to do so.

And it's quite an alarming thought, and I know it sounds very heretical, maybe,
sitting back in America to hear someone say that, but that is the reality, and
America is very slow to wake up to this new reality, because it's happened so
rapidly. China's rise has happened suddenly, and our decline, I think, is -
with this economic crisis - is now happening more precipitously.

GROSS: My guest is Orville Schell. He directs the Center on U.S.-China
Relations at the Asia Society in New York. We'll talk more after a break. This
is FRESH AIR.

(Soundbite of music)

GROSS: Let's get back to the interview I recorded with Orville Schell
yesterday, when he was wrapping up his visit to Beijing. Schell has written
nine books about China, is the former dean of the graduate school of journalism
at the University of California, Berkeley, and now directs the Center on U.S.-
China Relations at the Asia Society in New York.

Are there ways in which China is more advanced than the United States in terms
of clean energy, transportation, infrastructure, power grids?

Mr. SCHELL: You know, I heard a statistic the other day that a couple years ago
they had 700 miles of high-speed rail, and now they have 7,000 miles. Now, I
may have those statistics slightly off, but that's a staggering figure. The
United States really doesn't have one mile.

We have the corridor from Boston to New York to Washington, but that's not
really high-speed rail. That's sort of faster-speed rail. So you see the
infrastructure that's getting laid down, the new highways, the new airports,
the new ports, the new railroad systems. It's extremely impressive, and I
think, you know, it raises a question that is sort of frightening to
contemplate for an American, and that's this: Does the Chinese system, this
sort of autocratic form of capitalism, deliver better than democracy?

And as an ardent democrat, I contemplate the answer to that question with some
trepidation, because I think, you know, we feel in America, and in fact I think
it's more than a feeling, that in many ways our government is paralyzed,
paralyzed by a lack of money, paralyzed in Congress, paralyzed by sort of
vicious partisan politics, whereas China is able not only to gather information
well but to form policy quickly and then, most importantly, to effect it. And
you feel that everywhere you look in this country now, that they are on top of
things, they're able to do things swiftly to meet the very high-speed demands
of the situation, whereas I think we are kind of languishing in many respects,
and I'd say climate change is a kind of a metaphor for how difficult it is for
us to do things, and health care would be another.

GROSS: So you think China's moving more swiftly in developing clean energy and
new infrastructure because it's got money and also because it's authoritarian,
and it doesn't have to have these long, protracted votes that never happen,
like in the United States? Yeah.

Mr. SCHELL: There is an element of truth to it, but there are other elements in
this equation, and there's extraordinary energy. I went to a green-tech, U.S.-
China green-tech summit for the last two days, and you hear these Chinese
entrepreneurs. Every one of them is 30 or 40 years old. Electric car companies,
you know, high-speed rail, all sorts of interesting new technologies, and these
people are cooking. Now, the interesting question is: How did this come to
pass?

GROSS: Yeah, can you answer that?

Mr. SCHELL: Well, I mean, I can – I have some ideas, but I don't think I can
completely explain it. I mean, I think one thing that happened, the great
paradox was that 1989 came along, and it was a disaster for China. The massacre
in Tiananmen Square, the demonstrations, it was humiliating, and it was really,
I think, even the Chinese leadership thought this might be the end of the line,
and it certainly was for communist regimes elsewhere in the world. But it so
shocked them that they realized they had to do something really, really severe,
really bold in order to save the day, and Deng Xiao Ping did exactly that, and
what he did was he managed to win the battle to re-open the economy in 1992.

The conservatives in the party didn't want that to happen, and he went down to
Shanghai and then down to Shenzhen near Hong Kong, and he said we must learn
from the West, from any society, we must have stock markets, we must go high-
tech, and he said it's alright for people to make money. And that started this
kind of revolution. And I think it never would have happened if China hadn't
been sort of stunned and put into this sort of desperate straits by 1989.

And then, of course, you know, they had a very savage, brutal revolution under
Chairman Mao, and when that ended, and when Deng Xiao Ping came along and sort
of let them breathe again and said it's okay for you to exercise your ambitions
and to make money and to look after yourselves as well as the commonweal, there
was such an amount of pent-up energy and so much sort of desperate energy
waiting to get out that people just put the bit in their teeth and they've been
running with it ever since.

GROSS: China is still thought of, in spite of all the technological advances
that China has made and the economic power that it has, China is still
officially considered a developing country. And in the Kyoto protocol, China
comes under the category of developing country. So when does that change? When
does the title – I mean, it seems like China – parts of China certainly are
developing. Parts of China really are, like, quite developed.

Mr. SCHELL: Yes, and there are many people who think we ought to invent a third
category for a somewhat-developed country, because developing doesn't quite
describe China. On the other hand, China's very loathe to abandon that status
because there are a lot of special dispensations that come to a developing
country.

And you remember back when Robert Zoellick of the World Bank proposed that the
U.S. and China really ought to form a G-2, and you might think China would be
flattered to be among the elect, the two top countries in the world, but no,
they didn't want to do that at all. They don't want the responsibilities of a
developed country, and they don’t want to lose the perks that come from being a
developing country, such as not having to set, you know, defined limits on
their carbon emission that we've discussed.

GROSS: So is their status likely to change anytime soon, the status of
developing country?

Mr. SCHELL: Well, I don't think China's going to willingly give up this status,
curiously. I mean, you know, they spent all this last century trying to
overcome their weakness, their backwardness, and you know, they were called
China's sorrow, and now they've sort of overcome it, and we are willing to
anoint them with the crown of G-2 status or developed-country status, and they
say no, no, no, wait, we quite like it down here in the developing-country
world where the burdens are lighter. So it is somewhat paradoxical.

GROSS: You're on your way, after Beijing, to a conference in Dubai that will be
about energy. What are the people in Dubai going to be looking at, and who's
going to that conference?

Mr. SCHELL: Well, this is the World Economic Forum, and one of the things that
they are concerned about is how do you pay for all of these remedies. One of
the most graphic problems that Asia is going to have to deal with is the
melting of glaciers in the Himalayas and the Karakorum.

I mean, these ice fields are the largest masses of ice short of the two polar
regions, north and south, and the melting of these glaciers has been
precipitous because at higher altitudes there's a much more rapid elevation of
temperature because of global warming, and as the glaciers melt, of course we
will find profound effects being felt in every major river system of Asia.

So when you think of China, and you think of global climate change, and the
Chinese leadership know this, you have to think of things like that, that
you're altering fundamentally the sort of hydrology of a whole continent with
2.5 billion people living in it.

GROSS: Orville Schell, recorded from the NPR bureau in Beijing. We'll hear more
of the interview in the second half of the show. Schell is the director of the
Center on U.S.-China Relations at the Asia Society in New York. I'm Terry
Gross, and this is FRESH AIR.

(Soundbite of music)

TERRY GROSS, host:

This is FRESH AIR. I'm Terry Gross back with more of our interview with Orville
Schell about how China is changing and what that means for America and the
world. Schell has written nine books about China, used to write about China for
The New Yorker and is the former dean of the Graduate School of Journalism at
the University of California, Berkeley. He now directs the Center on U.S.-China
Relations at the Asia Society in New York. He was in China this week for
President Obama's visit. Yesterday, he went to the NPR bureau in Beijing to
record our interview.

Now I think it's interesting that your specialty now in terms of the projects
you’re working on in China have to do with climate change, global warming -
that it's not about human rights. And I'm not saying that you’re not interested
in human rights, but what you’re focusing on is global warming, climate change.
When Obama was in China, his emphasis was on, you know, climate change,
economic issues, not on human rights. He mentioned that he thought the Chinese
president should meet with representatives of the Dalai Lama as soon as
possible. He said some positive things about the free use of Twitter, but the
emphasis was not on human rights. So is human rights kind of taking a backstage
here because global warming has become so important?

Mr. SCHELL: Well, that's a very interesting question and I think in my own
evolution an answer is suggested. You know, my children were at school here a
couple of years ago and we took a little vacation trip up North to see some
monasteries and Buddhist grottos and it turned out to be coal country.

We never saw the sky for a week, never saw the sun and I looked at this
landscape that was so desecrated by the mining of coal. And it dawned on me,
this was the problem. And if you look now at the problems that we as a world
confront, I think you have to rank climate change right up there at the top.

This doesn’t mean that I like people being put in jail or losing their rights
and I still think this is extremely important. But if you look at where we
really can not afford to waste a minute, I think you'd have to say that climate
change begs all of us to make as herculean an effort as we possibly can before
it's too late. And China is the heart of the matter and the United States is a
close second.

GROSS: Well, since you’ve been going to China since 1975, tell us what you
think the state of human rights is there now.

Mr. SCHELL: You know, it’s - the state of human rights is not terrific but the
Chinese fear, deeply, instability. And whether it was under the old sort of
regime of Confucianism and the imperial system or under the newer system of
sort of Leninist, one-party structure, it’s always been a society that's
emphasized control. And so this is the way they sort of manage in the universe
and when things get tough they crack down.

So from the perspective of anybody who believes in freedom, it's sometimes a
difficult country in which to live. But one can understand why they do it. One
can understand that a country of 1.3 billion people, if you spill all those
people out like marbles on a gym floor and let them roll in every which
direction, you would have chaos and that is their most passionate fear.

So it isn't that it doesn’t have a logic. And now the logic has results, has
verifiable results, that look quite impressive to many and I think to many
Chinese. A lot of - most Chinese that I talk to are quite pleased. They're very
proud of their country. They see the accomplishments and they’re a lot less,
you know, in the thrall of America. There's an old expression, you know, that
even the moon was rounder in the West in America. Well, you don’t hear that so
much anymore.

GROSS: I don’t think most Americans know much about China's president. Tell us
a little bit about him and where he fits in, in the history of Chinese
leadership.

Mr. SCHELL: Well, President Hu Jintao is a curious man. He is probably the only
leader from a country of consequence who’s never given an interview to a
foreign reporter. And on the last day of President Obama's visit, when he held
his joint press conference with President Hu Jintao - who incidentally, here in
China, they refer to as Hu Juche(ph) or Chairman Hu, meaning chairman of the
Chinese Communist Party, not president. It isn't the top sort of position.
Anyway, when they had their joint press conference they didn’t take any
questions. You know, that says something about the urge towards control. They
just don’t want a lot of crazy journalists jumping up and asking gotcha
questions so they just don’t do it. Well, that's a different system isn't it?

GROSS: Would you consider him any more or less authoritarian in terms of human
rights than his predecessors - than his recent predecessors?

Mr. SCHELL: I think, you know, if you compare China today with the way it was
20 years ago, before 1989, it's much better organized and I think in many ways
more controlling and in many ways sort of more tightly wound. And I don’t think
they're in any big hurry to relax these controls.

GROSS: Now as the former dean of the University of the California at Berkeley
Journalism School and as someone who's now involved in the New Media Project,
tell us what the Internet is like now in China and how much control the Chinese
government is exerting over its use.

Mr. SCHELL: Well, it was interesting, when President Obama had his roundtable
with students in Shanghai the first day after he arrived, they had big
discussion with the Chinese government about whether it could be aired live on
television and radio. And they finally decided no, but they would allow it to
be aired over the Internet. And incidentally, when President Clinton was here
and Jiang Zemin was the secretary general of the Chinese Communist Party, at
the very last minute at their joint press conference, he did allow it to be
aired live and he allowed questions. So that was, what, 1996 I think. So you
can see there's a little retrograde motion there.

So the Internet is an area where, you know, I think it's sort of a Petri dish
where we can see the efforts that control being injected into the Petri dish,
to try to control the sort of natural spontaneous forces of the Internet. They
need the Internet for business and even the party needs it to communicate with
its people.

But they're actually spending a tremendous amount of money and effort to try to
keep the Internet from being, you know, a kind of a wild animal that may eat
them alive. They don’t allow pornography and they don’t allow a lot of other
things which they find politically unpalatable. And again, it's because they
fear the sort of errant effects of too much freedom of information, too much
independence of organization and because of social stability.

GROSS: And do you get the sense that most Chinese people accept those
limitations?

Mr. SCHELL: You know, I think as long as the Chinese Communist Party is
delivering 10 percent growth rates people will accept a lot. Now some people
don’t and those people have a very tough life. They’ve made a basic wager. You
know, they’ve in effect said that here's two doors: one's politics, one's
economics. You open the economic door and go through, all good. You open the
political door and go through it, be careful. So there's a tradeoff. But people
have really gotten not just a lot of sort of an elevation of standard of living
but I think, you know, not to be overlooked is the tremendous feeling of pride
of accomplishment.

GROSS: Orville Schell, it's great to speak with you again. Thank you so much
and I wish you good travels.

Mr. SCHELL: A great pleasure, Terry.

Orville Schell spoke to us from the NPR's bureau in Beijing. He's the director
of the Center on U.S.-China Relations at the Asia Society in New York.

Coming up, we talk with photographer Judith Fox about taking pictures of her
husband as he lost his memory to Alzheimer's. Those photos are collected in her
book "I Still Do." This is FRESH AIR.
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Judith Fox Turns A Close-Up Lens On Alzheimer's

TERRY GROSS, host:

Just three years after photographer Judith Fox married her second husband, he
was diagnosed with Alzheimer's disease. That was in 1998. As she felt the
disease slowly taking away her husband, she took pictures of him through his
transformation. Those pictures are published in her new book "I Still Do:
Loving and Living with Alzheimer's." Fox had been a business executive before
giving that up to become a photographer. Her work is in the collections of the
Los Angeles County Museum of Art, the Museum of Photographic Arts in San Diego
and the Harry Ransom Center in Austin.

Judith Fox, welcome to FRESH AIR. I'd like you to read the opening from your
book. I mean, your book is largely photographs but there is some very personal
text in it, so if you can read the opening for us that would be good.

Ms. JUDITH FOX (Photographer, Author, “I Still Do: Loving and Living with
Alzheimer's"): Sure. I'd be happy to, Terry.

These are some of the things my husband used to do: fly a plane, perform
surgery, consult worldwide, head a university and medical centers, hit four
holes in one, and play on the same basketball team as Bob Cousy. These are some
of the things my husband can't do anymore: find his way to and from an
unfamiliar bathroom, work the coffeemaker, play tournament golf or remember
something I told him two minutes ago. These are some of the things my husband
can do: express his love and appreciation, explain a medical issue to a
layperson in such a way that they understand it, remember his best friend from
childhood who was killed at Normandy, answer some of my math questions, supply
words I can't recall, shave and shower.

GROSS: Were you surprised that while he was forgetting how to use the
coffeemaker and couldn’t get from an unfamiliar bathroom back to where he
started that he could still supply words that you didn’t recall and solve math
problems?

Ms. FOX: Ed is very brilliant and he has what’s called large reserves. And it's
interesting, because he was diagnosed eleven and a half years ago and he is at
an advanced stage but his brain is still logical often. So Alzheimer's is a
very confounding disease and it's always surprising.

GROSS: How did you start taking pictures of your husband after his diagnosis of
Alzheimer's?

Ms. FOX: The original impetus for the project really didn’t have anything to
do, at least consciously, with Alzheimer's. Originally, I had given myself an
artistic challenge. I had read a book called "The Model Wife" by Arthur Ollman,
who was a photographer and also the founding director of the Museum of
Photographic Arts in San Diego. And in this book he explored the lives of nine
iconic male photographers and their wives, who were their models and their
muses.

And I thought the book was wonderful but my immediate question was where is the
model husband? Where is the male as muse? Where is an aging, maybe no longer
quite so right, body? So I started photographing my older handsome husband, who
was 76 at the time and three years into his Alzheimer's diagnosis. And
photographing him was another way of loving him, of touching him, connecting
with him.

But again, initially, it was - I was thinking about my husband as my model and
my muse. And I went to Arthur Ollman and showed him some of the early work and
he said to me you’ve got a book here. And when we discussed it further and I
asked him about the Alzheimer's issue, he suggested that I not have any of that
in my book, that the photographs stood as they were and that if I brought
Alzheimer's into it I would confuse possible publishers and that it would be a
difficult book to get published. And I thought about everything he said, and
the more I thought about it the more I realized that in addition to my husband
being my model and my muse, he was an Alzheimer's - is an Alzheimer's patient.
And that that’s an important part of the story.

GROSS: So, in your book, you have a lot of pictures of your husband’s face.

Ms. FOX: Yes.

GROSS: Did his eyes start changing as he got deeper into Alzheimer’s?

Ms. FOX: Yes and no. It depended on the day. The photographs in the book are
not chronological. And one of the photographs that to me looks most like the
old Ed was taken fairly recently. I see pain in a number of the photographs and
I did go through the process of thinking about the candor and what I would be
doing to our privacy as this project went on. And I said to him, after seeing a
particularly revealing photograph, that some of the photographs were going to
show his soul and was that okay with him. And he said to me, yes, it’s okay to
show my soul, just don’t show my penis. So, that’s been our agreement and it
was a gift that he gave me using his humor, which is still very much intact. He
gave me permission to be honest about what we’re experiencing.

GROSS: It’s a funny line, I have to say.

(Soundbite of laughter)

Ms. FOX: It’s a great line. It’s typical of Ed.

GROSS: You say in the beginning of your book that even when he got the
Alzheimer’s, one of the things he could still do is shave. You have a picture
of him right after he shaved and…

(Soundbite of laughter)

GROSS: …he's kind of bleeding between his nose and his lip. There's little
pockets of shaving cream on his cheek and his nose and his ear. It’s a very
sweet photograph in a way, but it also shows how even the things he can do, he
can’t do fully.

Ms. FOX: Right. And I think the quote that I have near that photograph is
sometimes good enough is good enough. And that’s hard for me because I tend to
be a perfectionist. And there are many gifts that come to somebody who is
caring for somebody with Alzheimer’s and learning to be easier about those
kinds of things is certainly one of them.

GROSS: Have you shown your pictures of your husband to him and initially what
have his reactions been?

Ms. FOX: I showed Ed the photographs early on and - Ed is a very modest man.
And so his only question was: why are you photographing me? He doesn’t think he
is particularly handsome and I think he is. He doesn’t think he is necessarily
a model for a book. And of course, I disagree with that. But over the years his
brain has become more and more of an issue. He has what’s called severe visual
and spatial agnosia, which means that his brain does not interpret what’s in
front of his eyes.

So, he can’t read. He can’t see the photographs. He recognizes very little. So,
when the book was actually published and I had an advance copy, I brought it to
him and put it in his hands. And we talk about the book and we talk about the
tour and he understands that, but it really pains me that we can’t share that -
this important part of our partnership and this moment in my life.

GROSS: So, he looks at those photos and he doesn’t recognize that they are
photos of him?

Ms. FOX: He doesn’t recognize photos as photos. His vision – again, because of
his brain, there is very little that he can actually see and interpret
properly.

GROSS: One of the things I keep thinking about: You married your husband three
years before he was diagnosed with Alzheimer’s. May I ask how old each of you
were when you were married?

Ms. FOX: Well, he is 16 years older than I. And I was 54 when we were married.

GROSS: So, he was 70.

Ms. FOX: Right.

GROSS: So, if I may just bring up a sensitive subject here, I think one of the
concerns that some people have when they fall in love later in life and they
want to get married is what are they taking on.

Ms. FOX: Right.

GROSS: Are they taking on a spouse or will they soon be a caregiver. In your
case, the Alzheimer’s was three years after, so just as you are getting to
deeper know the person who you had married at the age of 54, he was slowly
being erased by a disease.

Ms. FOX: That’s all true and I had that conversation with myself along with a
few others. My first husband, my late husband, died of cancer when he was 53.
And he was only three years older than I. So, as I thought about becoming
increasingly involved with a man who was considerably older than I, one of the
things I said to myself is that life can be so random. I could die before he
died even. You know, we just have no guarantees, period. And so, I sort of put
that aside. But what I also put aside is the comment that I made to myself
before we decided to marry and that was that Ed might have Alzheimer’s. So, I
decided to marry him even though, at that point at least, I knew that it was a
possibility.

GROSS: What made you think that maybe he has Alzheimer’s?

Ms. FOX: That is the most difficult question to answer because Alzheimer’s is
so incredibly slippery. And Ed and I had been friends for many years, and I
knew that he had a selective memory. I don’t know if it was something that my
late husband said who was also a friend of Ed’s. And he mentioned in passing
once that he thought Ed might have a memory issue. I can’t put my finger on
something in particular. I just know that at one moment I had that thought,
thought it through, decided that if he did have Alzheimer’s, I loved him very
much, and that nobody could care for him better than I. And then I went back
into denial mode.

GROSS: My guest is Judith Fox. Her book, “I Still Do,” is a collection of the
photos she took of her husband as he lost his memory to Alzheimer’s. We’ll talk
more after a break. This is FRESH AIR.

(Soundbite of music)

GROSS: If you’re just joining us, my guest is Judith Fox and she has a new book
of photographs of her husband who has Alzheimer’s disease, and the book is
called, “I Still Do: Loving and Living with Alzheimer’s.” You write about the
word sundowning, a word that's…

Ms. FOX: Yeah.

GROSS: …often used to describe the anxious and erratic early evening behavior
that often comes along with Alzheimer’s. And you say sundowning, how about
howling at the moon, clawing at the walls? How about the twilight zone? What
was sundowning like for him when he was living at home? And I should mention he
is in a home now, not living at the home with you.

Ms. FOX: Correct. He’s been in a facility for several months now. It was very
difficult because he was tremendously anxious. And that was often the time when
he would think about his mother. His parents, from everything that I know, had
a very happy and good marriage. And yet he’d be upset about his father, to whom
he was very close. So, that was when he had thoughts that pained him the most,
and when he was often the most confused. Ed has also had hallucinations for the
last several years. And that’s been very difficult. And I’m not sure that there
isn’t a connection between the hallucinations and the fact that his brain
doesn’t process images, and therefore, is making up stories for him. But the
hallucinations would often become more difficult, starting during that
sundowner time. And that also is very disturbing for him and for me.

GROSS: So, when he was hallucinating, what would you do, just try to reassure
him everything was going to be all right?

Ms. FOX: Right. I would use those words, you know, that he was safe and that it
was okay. But I would also try and make the situation one that was more
comfortable for him. For instance, when he started to see strangers in the
room, men in the room, at first, I would tell him - and I hated lying to him
and that was not the foundation of our relationship, but it became part of our
relationship. So, I would tell him, because it would make him feel better, that
the men in the room were actually part of a local patrol. And he wanted me to
call the police, so these were the police, and that made him feel more
comfortable for a while. One of the things that I think is most difficult for a
person with Alzheimer’s is their loss of grounding. And we all experience
walking into our living room and saying: now, why I’m here? What did I want to
get? What brought me into the living room?

GROSS: Absolutely, absolutely, yeah.

Ms. FOX: And - but we don’t worry about it excessively. We may worry about it a
little bit, but it’s not too bad. But imagine if you’re somebody with
Alzheimer’s and you walk into your living room, and you not only wonder why
you’re there, but you've forgotten that it’s your living room. And on top of
that you don’t even recognize the building that you’re in. And if like Ed, or
like some of our friends, you have hallucinations and you see birds flying out
of the fireplace, which a friend has experienced, or like Ed, you see men
climbing out of the floor, perching on the ceiling. You’re seeing a threat.
Imagine what that might feel like and how frightening that must be not to have
a solid foundation under your feet or even around you.

GROSS: I don’t think that I saw any pictures in your book of him – your husband
hallucinating frightening images. I mean, he doesn’t look terrified in any of
the photos. It doesn’t look like he’s having that sundowning effect in any of
the photos. And, maybe I’m wrong, maybe I’m misinterpreting them, but it seems
like you maybe protected him from documenting that or perhaps protected
yourself from documenting that in your photos, or maybe you just kept them out
of the book.

Ms. FOX: I think what shows in some of the photographs is certainly his anxiety
and his confusion and his pain. I think that does show. Ed is also a very
dignified and elegant man. And as candid as this book is and as honest as it
is, I wouldn’t have done anything that compromised his dignity.

GROSS: Judith Fox, thank you so much for talking with us and be well.

Ms. FOX: Thank you, Terry Gross. Thank you very much.

GROSS: Judith Fox’s book of photographs of her husband is called, “I Still Do:
Loving and Living with Alzheimer’s.”

(Soundbite of music)

GROSS: You can download podcasts of our show on our Web site, freshair.npr.org.
And you can follow us on Twitter at nprfreshair. I’m Terry Gross.
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