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[orchestral fanfare]

(LIPSYTE)

Coming up on "Life (Part 2)," taking care of a loved one can be as brutal for the caregiver as it is for the patient. We'll help you cope. And later, growing older and funnier with Joy Behar. Plus, best-selling author Alix Kates Shulman on an accident that changed her marriage forever. All coming up on "Life (Part 2)."

(woman)

Major funding for "Life (Part 2)" was provided by The Atlantic Philanthropies--engaging many to improve the lives of and achieve health and economic security for older adults. And by MetLife Foundation--celebrating the wisdom, talent and experience of older adults. MetLife Foundation proudly supports "Life (Part 2)."

[bass, & plucked strings play in playful rhythm; bright in tone]

(LIPSYTE)

Welcome to "Life (Part 2)," I'm Robert Lipsyte,

Caring for a severely ill loved one can kill you. Nothing illustrates this better than "The Forgetting," the Emmy Award-winning PBS documentary on Alzheimer's disease. Since the film was made, 2 of the 3 caregivers died before the Alzheimer's patients they were caring for.

Here's a look at one extraordinary caregiver, Harry Fugate and his wife Gladys.

(HARRY)

Why you stop? Why you stop?

 (GLADYS)

Get out my way, you always try to know everything, don't know nothin', get away.

(BOY)

I don't want to push you!

(GLADYS)

I do not want him to push me, I don't want him doing anything.

(HARRY)

Gladys is operating at the level of a 4-year-old and wanting her way. My big concern is

hat he can't understand why his grandmother will love him one minute and then fuss in another.

(GLADYS)

 I'm not going to swing.

(BOY)

Could you push me?

(GLADYS)

No, I'm not pushing you!

(BOY)

Look, she's not going to push me.

(HARRY)

How do I convince him that his grandmother still loves him, and it's not really her fault that she is that way?

(GLADYS)

I'm going to spank your behind.

(BOY)

No you're not, I'll be gone by then.

(GLADYS)

You can't be gone. You can't disappear nothin'.

(BOY)

I disappear your foot.

(GLADYS)

You can't do nothing but run your ugly mouth.

(BOY)

Yes I can; I'll be big.

(GLADYS)

I don't like him anymore.

(HARRY)

And I don't like her either.

(GLADYS)

 Liar.

(BOY)

 You're a liar.

(GLADYS)

Don't you call me no liar.

(HARRY)

I feel sorry for him, and I'm sorry for the kind of lasting impression it makes on his mind.

(GLADYS)

Christopher, did you hear me calling you?

 

(HARRY)

See what your grandmother wants. I'm not really sure what would set it off in a given situation.

(GLADYS)

Now what did I want?

(BOY)

I don't know.

(GLADYS)

You said you know.

(BOY)

I did.

(GLADYS)

You don't know nothin'.

(BOY)

Ow, stop!

(GLADYS)

But you just a smart mouth.

(BOY)

Get off of me!

(HARRY)

And it's no way that I can predict when such a thing will occur.

(GLADYS) No! [Christopher cries]

(HARRY)

The biggest stress I have is when it does occur, how do I resolve it? How do I calm her down,

how do I calm him down? Right after it's over, she'll forget what caused it, and be unhappy, and she was the one that did it. It feels like you're on a constant treadmill, but there's no escape; there's no way out.

(LIPSYTE)

As I mentioned, Harry died before his wife Gladys. But we're here with three survivors, veterans who have taken care of loved ones and are living and telling the tale.

Dr. Esther Sternberg is Director of the Integrative Neural Immune Program at the National Institutes of Health and the author of...

Tommy Hays is the Director of the Great Smokies Writing Program at the University of North Carolina at Asheville. His novel, "The Pleasure was Mine," is a moving story of caring for a spouse with Alzheimer's.

Since 1976, when Gail Sheehy raised American consciousness with her best seller, "Passages," she has been teaching us about the stages of life. Coping with the lengthy illness of her late husband, the legendary magazine editor, Clay Felker, has inspired Sheehy's 16th book.

Welcome all to "Life (Part 2)."

Now, I've been a cancer patient and a caregiver to a cancer patient. No question in my mind, caregiving was much harder. Dr. Sternberg, why was that? What was going on emotionally, physiologically that seemed so hard?

(DR. STERNBERG)

Well, when you're caregiving, you're undergoing chronic stress. And what's happening is, you're worrying about your loved one, but at the same time, your own stress response is having ravages on the body. You're pumping out stress hormones that tune down your immune system's ability to fight disease. You're anxious, you're mood may be depressed.

(LIPSYTE)

But there is a physiological reason for all this.

(Dr. Sternberg) Absolutely. I mean, these stress hormones are giving you energy, they're doing something for you.

Right, so whether you're a fruit fly or a mouse or a cat, or a rat or a human, we all have a stress response. And we need it to give us the energy to fight or flee, to focus our attention on the task at hand, and to give us a burst of energy to take care of that loved one. It takes a lot of energy. But the problem is, if that goes on too long, it's like running a car down to--you're driving it 120 miles an hour down the highway, and you burn out the motor. So this was created for the saber-toothed tiger attack, for this constant grinding.

(LIPSYTE)

Well, this must have real resonance for you.

Oh yes, it does.

(GUEST)

So many people have run marathons now. Caregiving turns into a marathon.= It starts as a sprint, and really nobody's prepared, nobody's prepared to take over the duties that dozens of people do in a hospital over a course of 24 hours. And suddenly, when your loved one is home, it's all on you. And the constant stress--am I doing it right? I must be doing it wrong, he's not getting better. I'm the only one who can take care of him, I'm what a state--between life and death. And this goes on and on and on. Anybody can do a sprint for months, maybe even 6 months, but this is a marathon, and you have to stop at the water stations.

(LIPSYTE)

You hit the wall at some point, didn't you?

(GUEST)

I did; it was about after 2 years of constant, towards the end, after 15 years of off-and-on caregiving. I felt, suddenly realized I couldn't bring myself to throw away the newspapers and magazines, and in a house with journalists, there's a lot. And I was dimly aware that there must be something really wrong when you can't do simple tasks like this. Finally, I mentioned it to the doctor and he said, "These are the symptoms of depression." And only because he was able to tell me that that's what it was did I take steps to address it. Otherwise, probably I would have burned out. I might very well have died before my husband.

(LIPSYTE)

You think this is more of a woman's problem?

When I was taking care of first my late wife, and then my parents, people joked and said, "You're the daughter."

Women take it on. I think the biggest first hurdle is that most people do not recognize themselves as caregivers. It's just what we do. You don't know that you need to treat yourself as well as your loved one.

 Tommy wrote a powerful and moving novel and the caregiver in Tommy's novel is a man, and in real life, it was your mother taking care of your father. And I wondered, reading the novel, if you needed to not make it a memoir, but a novel to approach this at a remove.

(TOMMY)

That's exactly right. I spent about a year recording our conversations, my conversations with my father who was the one with Alzheimer's. And also some of the scenes, some of which were funny, some which were heartbreaking. But after a period of time, when Daddy had to go into a nursing home, it was just too close, I just couldn't do it anymore.

(LIPSYTE)

And writing about it directly was too painful for you.

(TOMMY)

 Right, so when I adopted this point of view of this older man who was caring for his wife, it gave me enough distance to write about it in a way that used humor and in ways that I wouldn't have expected.

(LIPSYTE)

Do you think that caregivers should keep journals?

(TOMMY)

Oh yes, and you know, the other thing is, a simple thing--we have to feel it to heal it. And so whatever outlet you have, playing music, composing a poem, dancing-- you have to feel it. Also those kinds of activities help you go off-line, so whatever it is that allows you to completely focus on something else in a meditative kind of way counters those negative effects of stress on the brain and on the immune system; it shifts that brain's stress response towards a relaxation response.

(LIPSYTE)

So respite doesn't have to be 4 days in a spa.

(TOMMY)

No, but that's a good way. I also think you have to really, sometimes you, at least once a year, you really have to get away for a full week, a vacation, just like everybody does.

(GUEST)

Well in my mother's case, she wouldn't leave my father. She went every day, well, when he was still at home, he was at home, and there really wasn't anybody to come relieve her. Then once we made the shift to the nursing home, which was a big shift, she went every day. And she wouldn't go away, she wouldn't take a vacation.

(LIPSYTE)

How big a shift was that, how difficult was that?

(GUEST)

It was very difficult, that change, and in fact, my brother and me and my mother, we couldn't really even bring it up. And so my mother's brother, a wonderful man, came over and sat down with all of us in the living room, including my father, and he turned to my father and said, "Tom, how would it be for you to be in a place where you could get 24-hour care?" And Daddy said, "I wouldn't like it very much." And then he said, "But you never know." It was just like this unexpected opening.

(LIPSYTE)

You had real instructions. I mean, Clay didn't want, wanted to be at home.

(GUEST)

Yes, well most Americans want to be at home in the late afternoon of their life. His mind was acute, he was still advising his students, we'd get to go out to concerts and for an evening with friends. But Medicare does not make that possible unless you have the money to hire people, because Medicare pays nothing for long-term care at home. It comes as a shock to most people. So we're taking down the caregivers who are in their 40's and 50's and 60's, along with the aging parent in a longevity revolution that we're not recognizing has a downside economically. And it also has a downside from the stress response, because economic distress is a huge stressor. So you're compounding all those personal guilt and feeling stress responses that the caregiver is having from the poignant family situation, you're compounding it with a very real stressor called how am I going to pay the bills?

(LIPSYTE)

Talking about guilt, and I'll go first if you guys don't want to. There have to be moments in the darkness of your soul when you say, "Die already." You know, I think as caregivers, we all live with the unanswerable question, how long? And so does the patient, and nobody can give you that answer. And so there are days when you say, wouldn't it be better if it was sooner, because there's so little left. But you can't tell what the loved one is going to feel because they may be, they're just able to see the sunrise in the morning, they're just able to hear the voice of a grandchild on the phone. And that may be enough. And then you think about that, you feel guilty, don't you?

(GUEST)

Right, and there's also another guilt. I've watched my mother care for my father, but I live a little ways away from where they live. So there was my guilt of feeling like I couldn't participate enough. Then my brother, who lives even further away, I'm sure he had even more guilt, because he couldn't be there. So there's guilt radiating out.

(LIPSYTE)

Let's talk a little bit about what the caregiving we can give or we expect for caregivers. Let's forget about the patient.

(GUEST)

In my case, I would just say, "Okay Mama, you have the day off and I will go down and spend the day with Daddy, however long."

(LIPSYTE)

I have a feeling that it was not so easy to say, "Mom, you've got a day off." You almost had to construct a program.

(GUEST)

That's exactly right, that's exactly right.

(LIPSYTE)

So what did you do? Did you have somebody come and drag her away?

(GUEST)

No, I would call her and we would meet and discuss like the laundry; she would do the laundry for the nursing home to save money. So I would meet her at our home, then I would get the laundry

and she'd tell me which drawer it would go in, and step by step, we would walk through it. And she would say, "Now make sure that the aides have changed him because sometimes they forget." And so I had a little checklist. But it wasn't just me; I mean, she has a lot of friends. And so they would stop in. And sometimes we wouldn't always know they'd stopped in because Daddy didn't remember that they had. But there was a sense of support from her friends that was really important. Well, and social support is such an important piece of diminishing the stress response. Again, there's studies that show that people who are isolated, that have fewer social contacts, a smaller network, they also die sooner. I think the key to it is the family meeting, and the sooner the better, because I've interviewed a lot of families, where if somebody, if the daughter-in-law, or the daughter steps in and takes over everything, everybody else just sort of drifts away. But if the family meeting happens and everybody is asked what can you do, then everybody can feel like they're contributing. It assuages the guilt and it take the onus off one person. And it also gives each person a sense of control. You feel you're contributing and you may say, so the family meeting is a brilliant idea because you may think, what can I do, I'm not a doctor or a psychologist or whatever, but everybody can do something. Somebody can cook, somebody can draw, somebody can drive.

(Lipsyte)

The secret then really is while everybody is well, make a lot of friends, which we are going to do right now.

Thank you all so much for joining us on "Life (Part 2)."

I schedule my elliptical machine workouts to watch Joy Behar, the fearless co-host of "The View" on ABC, she proves every weekday that humor and honesty are a powerful combination. But I was still surprised by how frank, fierce, and funny she was when we sat down to discuss the pleasures and terrors of her late-blooming career on television.

Joy, thank you so much for being with us. This word "fundant," which you created. Why aren't you a pundant, or a comic?

(JOY)

Well, I am a comic; I do stand-up comedy, and "The View" is kind of a place where I express my opinions quite a bit, and so I came up with fondant because it seemed to combine what I'm doing, which is to give my opinion about things, seriously, and to make it fun to do.

(LIPSYTE)

Just before he died, I talked to Alan King, and he was saying that as you grow older,

comedy becomes more difficult because you become compassionate. And you kind of lose that edge of cruelty that you find necessary. Is that anything, does that resonant with you at all?

(JOY)

No, not at all. I don't know that I'm cruel at all, I don't think I'm cruel. There's a certain amount of meanness, I think, that does go with it if you're going to be pointing. And your comedy has not changed as you... I've grown a lot....grown in wisdom. I think that I'm better at it, I'm much better at it. I've been at it for 25 years, I have much more confidence, I have more subjects to talk about now. I don't understand comedians who start at 21 years old. What are they going to draw on, when they were in utero. I mean, how far back can you go when you're 20. But when you're 40, then you have stuff to talk about. You've been married, you've had jobs, you know people, etc., there's a conventional wisdom that women become less afraid as they get older.

(LIPSYTE)

Do you think that's true?

You get to an age, menopausally speaking where you're like, you don't really care if you're as sexy anymore to men. It's such a drain on women. You spend your 20s, your 30s, even your 40s, trying to be attractive, trying to be demure on a date. When I met my guy 26 years ago, I was a comic, I was doing it in the Village and here and there. I never told him for a year when I was dating him, never told him I was a comedian for a year. Now that tells you something. That's because I didn't want him to get scared of me, 'cause I knew that once you tell a man that you're a comic, you're standing up there like a guy, with a microphone. It's not the most feminine thing to do. Luckily he saw me perform finally. And he laughed. He said, yeah, you were very funny and he was fine. But I wasn't sure if it would work.

(LIPSYTE)

Let's cut to the face.

(JOY)

Cut to the face?

[laughs]

(LIPSYTE)

Yeah, you talk about Botox.

(JOY)

Oh yeah.

(LIPSYTE)

You're a fan.

(JOY)

I'm a big fan of whatever needles they want to give me in my face, but no knives.

(LIPSYTE)

Why do you make a distinction?

(JOY)

Because I'm afraid of the knife. I don't want an anesthesia, no anesthesia and no recovery, that's my motto. But a few shots to pull this up a little and whatever, I don't mind it.

(LIPSYTE)

You think women should do it?

(JOY)

Yeah, you want to look younger, the way you feel. I feel like I'm still 25 or 30 and I don't want to look like an old hag. I said to my mother one time, 'cause she always was blonde. And the Italian women, the older they get, the more blonde they get, it's like a thing. I said to her, "Are you ever going to be a little old gray-haired old lady?" "Never!" And she died blonde.

(LIPSYTE)

Does anything scare you anymore?

(JOY)

Death-- the fear of pregnancy has been replaced by the fear of death, and so that's where I'm at now. There's no pill yet. There's no pill for that, which annoys me. I really don't approve of dying, I think it should be eradicated. It's not being dead that I'm afraid of, it's dying, it's the part of dying. Once I'm dead, bye, that's it.

(LIPSYTE)

Wait a minute, you're talking about pain, you're talking about debilitation.

(JOY)

No this is what I don't like--the diagnosis. I don't want to hear those words, "You know what, it's inoperable." I don't want to hear those words. I want them to just, when they know that, they could kill me then, it's okay. You've got 6 minutes to live.

[laughs] Exactly. I have set up several people to step on the air hose, just FYI.

(LIPSYTE)

Do you have a living will?

(JOY)

Of course, "Do not resuscitate." Although those bracelets can be tricky, because you're accessorizing and they think, you could pass out and then they think you shouldn't be resuscitated. So it's a gray area here.

(LIPSYTE)

 Until the curtain drops, is your course set? Do you know what you're going to do? People say, "What do you want to do next?"

(JOY)

Yeah, when you grow up. At a certain point in my life, and it took me many years of psychotherapy, but I started to really start to live in the moment, which is the goal really, of anybody, if you really want to live your life, you have to be in that day, and that is my goal. Continues to be my goal, to have the day. That's it, it's like AA says that one step at a time, it really is very good for everybody, even if you're not an alcoholic.

(LIPSYTE)

Thank you so much for giving us your moment.

(JOY)

You're welcome, it was lovely.

(LIPSYTE)

Joy, thank you. Okay. Alix Kates Shulman broke into feminist consciousness in 1972 with the publication of her best-selling novel, "Memoirs of an Ex-Prom Queen." It was an ironic look at growing up as a beautiful girl in middle class America. Her most recent book is a memoir, "To Love What Is," and it describes her approach to caring for her ailing husband.

(ALIX)

Four years ago, my husband fell from his sleeping loft and suffered a traumatic brain injury, which left him unable to remember anything that happened from the day of the accident on.

On that day, our marriage, which had been built on equality and autonomy, was transformed forever. My husband sometimes exhibits frightening behaviors typical of his condition like screaming and cursing when he's frustrated or fearful, things he never did before his fall. It's often very hard to deal with. Still, he is the same dear man I first fell in love with in 1950 and have lived with for more than two decades.

Behind his symptoms, his self is intact. He is my gentle, loving husband, who thanks me a dozen times a day for sticking by him and who takes as much joy as ever in sipping a cappuccino at our favorite cafe, or dancing with me in our living room. I don't hold with that widespread cliche that says that people with dementia change their personalities, becoming entirely different people. They may lose the capacity to control their emotions, and many other capacities too, but it's not true that they are no longer themselves and can be dismissed. Even as he gradually gets worse, he remains himself.

People ask me why I don't put my husband in a nursing home, or hire someone else to care for him around the clock, and get on with my life. They don't understand that aside from the practical difficulties and astronomical costs, he is and always will be a major part of my life. In some ways, paradoxically, we've grown even closer since his accident, Now that he's so dependent on me. I realize that the time may come when I'll no longer be able to care for him by myself and I'll have to follow their advice, but I hope to postpone it as long as possible. And should that day come, I hope I'll be able to adapt to it gracefully--that's my goal, to accept and adapt to whatever comes, to love what is.

That's what has enabled me to cope with the many difficulties we've had to confront so far. That's what I count on to carry us through to the end.

(LIPSYTE)

We wish Alix Kates Shulman and her husband all the best.

For now, that's it for "Life (Part 2)." I'm Robert Lipsyte, thanks for watching.

See you next time, older and better.

 (woman)

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[orchestral fanfare]

(woman)

Major funding for "Life (Part 2)" was provided by The Atlantic Philanthropies--engaging many to improve the lives of and achieve health and economic security for older adults. And by MetLife Foundation--celebrating the wisdom, talent and experience of older adults.

MetLife Foundation proudly supports "Life (Part 2)."

(woman) I am PBS.