Moyers Thinks the Drug War is the Vietnam of Our Time.

Show: FRESH AIR
Date: MARCH 26, 1998
Time: 12:00
Tran: 032601np.217
Type: FEATURE
Head: Caring for the Seriously Ill
Sect: News; Domestic
Time: 12:06

THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT
BE IN ITS FINAL FORM AND MAY BE UPDATED.

TERRY GROSS, HOST: This is FRESH AIR. I'm Terry Gross.

When you find out your parent has had a stroke or your spouse has cancer, you not only have to deal with your emotions, you have to take on a new job. You become a caregiver and you may feel totally unprepared.

A new book called "The Complete Bedside Companion" is filled with advice on caring for loved ones at home and on being their advocate while they're in the hospital. The author, Rodger McFarlane, writes from experience. He's taken care of dying members of his family. He's cared for many friends who have died of AIDS and has offered advice to hundreds of people caring for loved ones.

McFarlane has been the head of two influential AIDS service groups: Gay Men's Health Crisis and Broadway Cares/Equity Fights AIDS. Let's start with some advice for anyone with a loved one in the hospital. McFarlane says even if you're annoyed with the nurse, even if the nurse hasn't brought the pain medication on time, don't blow up.

RODGER MCFARLANE, FORMER EXECUTIVE DIRECTOR, GAY MEN'S HEALTH CRISIS AND BROADWAY CARES/EQUITY FIGHTS AIDS, CO-AUTHOR, "THE COMPLETE BEDSIDE COMPANION: NO-NONSENSE ADVICE ON CARING FOR THE SERIOUSLY ILL": The real trick to being a good caregiver is to remember this isn't about being right. This isn't about getting your way. This is about getting your loved one exactly what they need...

GROSS: Mm-hmm.

MCFARLANE: ... whatever that takes. And often, that takes a white lie and a big smile. It also takes, you know, thinking of everything before it becomes a problem and asking the nurse and the staff, and nudging them and making yourself indispensable to them, and being friendly and building a rapport very diligently with them, so that when you do have a problem, you can get someone's attention and get it tended to.

GROSS: What do you think is a kind of nice way of insisting that somebody bring the pain medication?

MCFARLANE: There's two things. First of all, anticipate it. Don't just be passive. You know when it's due. You know when they do it, and go ask for it early. The other thing is, ask a question instead of making a complaint. I walk up to the nurses's station and I say: "who can I talk to about getting Mr. McFarlane's pain medication?"

GROSS: Now, you deal with a problem that is really common and really frustrating, and that is nurses who don't do a very good job at putting the needle in for the IV -- the "veinny (ph) puncture."

MCFARLANE: Mm-hmm.

GROSS: And people's veins gets really irritated and inflamed when it's not done right, and it can be just one of those real aggravations of an extended hospital stay. How do you deal with it, if you see a nurse who is kind of striking out with the needle and you're getting more and more uncomfortable watching this happen?

MCFARLANE: First of all, let's be -- let me tip my hat to all the nurses in the world. Often, the nurse is the best person. It's medical students and doctors who haven't practiced recently who can also drive you crazy, as well as lab technicians who are undertrained or in a hurry. But also many of us just have bad veins, particularly when you're very old and very sick. So, it's inevitable these repeat stickings is going to be a familiar scene.

My personal rule is three strikes, you're out. That we'll -- that I just say: "let's stop now and wait until later." And everyone should know that you have a right to demand a more experienced provider, too.

GROSS: How do you demand a more experienced provider without sounding, you know, like the -- the uppity relative who's ordering everybody around?

MCFARLANE: Well, first of all, if you diligently built this rapport with the staff like I talk about from the get-go, that's an easy thing to do. But even if you're dealing with a perfect stranger, I just put my hand out on my father's arm and say, "that's enough for now. This is hurting him. Let's wait a little while and try this again or get someone else in here to try this."

And usually that's sufficient. If that's not sufficient, I'm on the phone to the doctor or the charge nurse.

GROSS: Now I've kind of started with criticisms of nursing care, but I mean I think so many of us have had really good experiences with nurses...

MCFARLANE: Sure.

GROSS: ... and feel enormous gratitude for the care that they've shown.

MCFARLANE: People don't become nurses and doctors because they're -- because they're mean and selfish.

GROSS: And I don't think people become nurses because -- you know, because they're in it for the money, 'cause the money...

MCFARLANE: Right, right.

GROSS: ... money probably is not that good. You suggest leaving your name and phone number with the nurse and saying "call me if you need -- need me to bring something for, you know, my father or my lover, my husband, whatever."

What's the point of that?

MCFARLANE: A number -- and I'll give you a couple of examples. I give them a business card and insist that they take it to the front of the chart. My good friend George Kingsley (ph) died a few years ago, and he had a sudden brain infection in the middle of the night, and he was at the end of his life.

He had issued an advance directive. He did not want to be resuscitated or put on a ventilator. But he lost consciousness in the middle of the night, and the intern and resident who had never seen him, you know, were very conscientiously rushing him to intensive care and getting ready to put him on a ventilator.

If my card hadn't been on the front of that chart, to make the resident call and say "George has taken a turn for the worse. What should we do?" -- I would never have had the opportunity to stop those things.

GROSS: Wouldn't your name, though, be on the equivalent of a next-of-kin form where somebody had written down the person who they want to call?

MCFARLANE: In all honesty, those names aren't called until there aren't many choices left.

GROSS: Right, right.

MCFARLANE: I would rather -- and again, I want that rapport. I want people call -- feeling free to say "could you bring in some socks and underwear in the morning." And -- because the same person who's gonna make that call is the person who's going to tip you off at two in the morning that something's going on.

GROSS: Yeah. Roger McFarlane is my guest, and is the author of the new book The Complete Bedside Companion: No Nonsense Advice on Caring for the Seriously Ill. And that's something he's had a lot of experience doing. And he's also the former executive director of the Gay Men's Health Crisis and Broadway Cares/Equity Fights AIDS.

How do you deal with visitors who overstay their welcome? You know, your loved one is very popular, has friends and family, and it's maybe a little bit exhausting for them to have a lot of people around.

MCFARLANE: It is. There -- I laughed when you asked that question. There was this old man who was a friend of my dad's who brought us all joy because the first hour of his visit was delightful as we strolled down memory lane together. But after the third or fourth hour, and my dad was really sick and weak, this became a problem.

What I would -- generally, I just lie in that situation. I stand right up and smile at him and say: "Mr. Bolton, it's time for dad's bath. You need to go on home now. Thank you so much for coming. I can't tell you how much it -- how nice it is to have you here" -- as I hold the door open and pat him on the back and help him with his coat.

There's a more direct way to do that, too, though and I've also turned to my stepbrother, I remember at one point, when his -- he was overstaying his welcome when his mom, my stepmom, was dying and I just turned to him and said: "Johnny, you're no use to anybody today. You're too upset to be here. You're upsetting Lynn. I think you need to go home now."

GROSS: A lot of people will say: "oh, is there anything I can do to help?" -- and some people mean it and some people are just being polite, hoping that you say "no, everything's fine; there's nothing you can do." When people ask you that, how seriously do you take it and do you actually give suggestions of things they could do?

MCFARLANE: I have a list by the phone, like the garbage bags, like could you pick up this prescription, like could you run the kids, you know, to soccer practice. I keep a list by the phone of everything -- literally everything I know -- can you pick up the mail; there's a package at FedEx. And when somebody says "is there anything I can do?" -- I start down the list. Could you run by the market for me? I need some garbage bags. I need some toilet paper.

GROSS: And do you feel bad about actually making the assignments? Or do you feel like, well people asked and they'll probably feel good that they've done something to help?

MCFARLANE: Most -- listen, I really believe in -- that's been my experience. When people say that, they're not -- they really want to be of help, and they don't have a clue where to begin. They're dealing with a stranger. They don't want to intrude. They don't want to be nosy. They ask -- they just ask you: is there anything I can do?

When you give them an answer to that, I think nine out of 10 people are delighted and feel useful and are -- and actually helpful, as opposed to standing impotently by wringing their hands.

GROSS: One of the times that you really want to be in the room at the hospital is that time of day when the doctor's there making rounds, and that way you could get the direct story from the doctor about how, you know, the condition of the patient is. And you can ask any questions that you want to ask.

What do you do when you can't be there for the rounds and you still want to be able to talk with the doctor?

MCFARLANE: What most people -- I make a date. Either I make an appointment, whether that's once a week or every two weeks, with my dad's doctor and go over there and sit down and talk to him myself. The best way to do it, though, is to call his receptionist or secretary first thing in the morning and make a phone date -- literally make a phone date. Pull out your calendar and say: "can I speak to him at 1:15? 2:15? She has his calendar right there. She knows when he'll be in the office. And you make a date and ask those questions.

I think you'll find most doctors' offices are extremely accommodating.

GROSS: How do you avoid going crazy when you're spending lots of days in the hospital? I mean, not as a sick person, but as the loved one of a sick person? What do you do? I don't know if you get this. I know when I walk into a hospital, I just get this like creepy, sinking feeling. It's -- you just -- you feel the illness all around you. You feel the despair and it doesn't -- it's not exactly great for the spirit.

So, how do you deal with being in a hospital day-in and day-out for a period of time?

MCFARLANE: You know, we -- we interviewed about two dozen families for this book, so that it was really grounded in reality. And that was a really completely consistent theme. No one had a easy answer to that one. They looked back on caring for the people they loved, and say "I don't know how I did it."

These people had kids. They had jobs. They had health problems of their own. They were spending 30, 60, 90 hours a week taking care of someone they loved, and their household income was cut in half; the pressures, the demands are incredible. But everyone also said they would do it again for someone they loved.

And the way you do this is not to make the mistakes everybody else has made. You make sure you don't try to do everything yourself. You spread the work around from the get-go. You give yourself a break religiously, every day. You get, you know, six to eight hours sleep every day. And if you're not getting it, then you talk to the doctor about a sleeping pill and getting more help -- community services, respite care, adult day care.

You do whatever it takes to stay in the saddle until this is over.

GROSS: My guest is Rodger McFarlane, author of the new book The Complete Bedside Companion. We'll talk more after a break.

This is FRESH AIR.

Back with Rodger McFarlane, author of The Complete Bedside Companion: A No-Nonsense Advice Guide on Caring for the Seriously Ill.

Let's talk a little bit about home care. A lot of patients are released earlier than they used to be, for several reasons. One is 'cause it's cheaper that way. Another is because there's actually medical technology that makes it possible to administer home IVs and to do, you know, other procedures at home that used to only be done by professional staff in the hospital.

I think it's -- it's so terrifying the first time you have to, say, administer a home IV and you feel like you're -- you're not trained for it. I know when I had to do that, I was afraid I was going to, you know, kill my loved one. You know...

LAUGHTER

... instead of -- instead of helping him. It was terrifying to me.

MCFARLANE: But that's -- but what you have to remember is that's exactly what every nursing student and every medical student felt like their first time. I bet you also got good at it.

GROSS: I got better at it. I never really felt confident.

MCFARLANE: Mm-hmm.

GROSS: It caused me great anxiety.

MCFARLANE: Listen, it can go both ways. And what I -- my advice there, there are people who learn this. There are people who do a better job, a more conscientious job, than the medical team. Just -- you know, Suzanne Hardy (ph), who nursed her daughter Kristin (ph) in our book, with very advanced diabetes, wouldn't let anyone near her IVs with very good reason. They had had every terrible experience.

On the other hand, if any job is too much for you or you can't master it and you can't get the help you need, then it becomes your job to make sure it's done well. Then maybe they shouldn't be on IV therapy at home, if you can't do that reliably and safely; then maybe it's time to start talking about a different setting or having the home nurse come do that.

GROSS: For me, I -- I think the isopropyl alcohol industry made a lot of money during this period because I was so busy, like, tripling -- disinfecting things. You know, just to be on the safe side.

LAUGHTER

In your chapters on home health care, you have some very good advice on how to deal with nausea. And, you know, you gotta get the patient to eat and yet, you know, maybe they've had chemotherapy or they're taking medicine that isn't agreeing with them or they have a digestive illness. And it's hard for them to eat and they're nauseous a lot of the time. I think one of the bits of advice that you give that some people might think of as obvious, but I thought was really very good, was if somebody is nauseous, that's not the time to feed them their favorite food.

LAUGHTER

Explain why not -- I thought this was very, very good.

MCFARLANE: Well, my dad was -- my dad was sick to his stomach for, oh, for months and months and losing weight. And so -- and feeding him took every trick in the book. And then the one time -- the one time you have his favorite meal, he feels like eating and he's sick, and you know, and you repeat your favorite meal, then the one thing that he would eat was knocked off the menu for the next month. It would make him sick again every time he looked at it.

So it's -- there's a -- you know, there's a lot of little tricks, not just from my family, but from experts and from families who have lived this, there are things to do and not do to get good symptom control whether it's nausea or diarrhea or pain; that you really have to know to get through this at home.

GROSS: Yeah, so if you -- if you serve a favorite food during a time of nausea, then nausea's going to become associated with the food and it's not going to be a favorite food for much longer.

MCFARLANE: Right, and that was the one thing they would eat when it was so hard, and now they -- now they're off that, too.

GROSS: I think everyone who's cared for somebody who's been sick has dealt with this. Now, you're feeling like quite the hero 'cause you're doing such a great job taking care of the person who you love, and you're sacrificing a lot in your own life. And suddenly this person is like lashing out at you and criticizing you and maybe there's other people around and they're overhearing it and you're feeling not only insulted, but embarrassed. And you say that this is a very typical thing that happens. Why do you think it's so typical?

MCFARLANE: It's very common. First of all, sick people and dying people have plenty of things to be mad at. On the other hand, they can't always -- they have to -- they have to lash out at a safe target. They know they're not going to drive us away.

They know that -- it's the same way in a relationship. People face illness and die exactly the way they dealt with the rest of life: those that lay blame; those that lashed out; those that got defensive; those that got ugly, pushy; who scream and yell -- they're gonna behave the same way.

Although it can also -- I tell a very funny story about my dad, you know, me slavishly catering to his culinary whims, trying to get him to eat anything. And then someone brings over some nasty casserole and he wolfs it down in front of the company and says, you know: "damn, I haven't had a decent meal in a week."

And I wanted just to bust him. But you realize that these needling remarks and passive behavior -- overextending themselves -- these are the way sick people express anger, and the balance of power is dead set against them. They have a lot to be angry about and not many ways to express that.

GROSS: So on the one hand, you advise people, don't take it personally if the person you're taking care of suddenly starts like criticizing you; but on the other hand, enforce appropriate boundaries and protect yourself. What do you think you should do to protect yourself and enforce those boundaries?

MCFARLANE: There's a wonderful story in there -- one of our caregivers, her husband got a little strong-armed and he was just really frustrated and she did -- she did exactly what the experts advise. She just stepped back and said: "you're not going to behave that way."

She walked away until it was over and left him there long enough to realize, you know, "I'm not the enemy. I'm part of the solution. You're mad at something else." You simply say it and you walk away and leave it, and it will -- and it usually changes.

If not, it's time to get some professional help, too. There are people who really -- you know, who in their rage and their impotence and their fear, become truly abusive. And you have to -- and you have to spread the work around. You have to protect yourself. You have to get away from them as much as you possibly can.

GROSS: We've been hearing a lot lately about how pain is often under-treated and we should keep people who are very sick and who are terminally ill comfortable, and -- you know, treat the pain medically, and treat it sooner rather than later because the pain's only going to get worse if you let it go untreated and then you'll need more medication, finally, to treat it.

You give similar advice about depression -- about making sure that you treat depression. Why do you emphasize that?

MCFARLANE: The reason we emphasize depression is because it happens to most people, and there's something terribly American about, you know, well, we'll scream and fight about pain medication, or sometime we will, or when you see somebody who's in, you know, obvious denial, we'll all just, you know, talk 'til the cows come home. There's something -- I don't know -- there's something very puritanical about the stiff upper lip, this -- we admire people who just buck up and hang tough.

Most sick people get clinically depressed and so do their caregivers, and that's a medical condition that can make the disease worse and even kill you, left untreated. And I have seen people mired in depression with the entire medical team and their family standing there thinking, going: "oh isn't that sad. Gosh, I guess it's obvious they're depressed. They're" -- you know -- "they have cancer after all" -- instead of treating it.

GROSS: Well I think one thing that confuses the issue is that often the medication that you're taking can be mood-altering as a side effect. You know, the sedatives and so on can -- can make you depressed.

MCFARLANE: Absolutely -- all the -- and pain medication, and some sedatives -- that's so I can sleep...

GROSS: Painkillers -- right.

MCFARLANE: ... drugs, and God knows chemotherapy and...

GROSS: Exactly. Right.

MCFARLANE: ... steroid -- steroids will make you crazy.

GROSS: Right.

MCFARLANE: But all the more reason to get a handle on it.

GROSS: Mm-hmm.

MCFARLANE: That you have to treat it. It's like you have to treat it because when you're -- when that many chemical interactions are going on, it's ridiculous to say "cheer up."

GROSS: You warn in your book that, you know, the importance of, like, the death bed reconciliation scene is usually exaggerated and over-romanticized. What about it -- what about your experiences has led you to that conclusion?

MCFARLANE: Well...

LAUGHTER

... I have to laugh because we -- we form our impressions of dying and death from TV and the movies, and if you saw "Terms of Endearment" or "Philadelphia" -- things like -- or even "Camille" -- it's like your skin gets rosier, the strings swell, the camera focus softens, and you're surrounded by Joanne Woodward and Antonio Banderas telling you they love you.

LAUGHTER

That, in my experience, is not exactly what life in intensive care and the emergency room, where four out of five of us die, is like. Deathbed, you know, epiphanies and, you know, are not met with open arm absolution in most families.

I'll tell you a very personal story. We were -- we had a very tough childhood, and my brothers and I were physically and emotionally abused. And I remember my father most vividly walking away when those things would begin. There was no way...

GROSS: It was your mother who was the abuser?

MCFARLANE: Yes. And then, some other relatives. It's a long tormented story that many Americans share, I'm sure. On the other hand, my father many years later, I was still very bitter of him failing to provide us that protection as little children. And taking care of him was -- was really a very healing experience in my family because we did not -- you know, you don't return that stuff.

But all that to say, being able to care for my father, to provide the protection he could not provide for me, in the end I couldn't forgive him. He couldn't make up for that, but I gotta tell you what helps me survive his death in those years is knowing, before he died, he looked at me and my brothers and said: "I don't know what I would have done without you boys." And that was more important than -- than seeking revenge or some, you know, some -- some phony rapprochement that years of living had failed to deliver.

GROSS: When did he say that? How -- was this like during the process of caring for him? Or was this like moments before his death?

MCFARLANE: No, this was the last year of his life. Dad actually had heart surgery before his cancer was diagnosed, so I got to spend a month with him down on the river post-op. And that's when a lot of this was said. He did not have a good surgical recovery. He was very sick. We knew something else was going on. He was all alone. And I don't want to say "frightened." My dad was a big strong brave guy who faced this resolutely.

On the other hand, he was a vulnerable old man who was alone, and those were when these conversations were had. And that's when I promised him, as did my brother, that, you know, the past will not stand between us here. We will be here for you no matter what happens. We can handle the symptoms. We can handle the bills. You will be cared for. You know, what's past is past, and it was really important to move forward, like I said, and not return that abuse or that lack of protection.

Disease and death -- most families are not perfect, and certainly not mine. And disease and death takes place in the context of loveless marriages and years of addiction and abuse and great regrets. And that's the context, not some -- you know, not some sentimental soap opera a screenwriter dreamed up.

GROSS: Rodger McFarlane is the author of the new book The Complete Bedside Companion. He'll be back in the second half of the show.

I'm Terry Gross and this is FRESH AIR.

This is FRESH AIR. I'm Terry Gross.

Back with Rodger McFarlane, author of The Complete Bedside Companion. He's also the former head of two AIDS service groups, Gay Men's Health Crisis and Broadway Cares/Equity Fights AIDS. His new book is filled with advice for people taking care of seriously ill loved ones.

Have all your experiences with people who were dying made you kind of do these scenarios in your own mind about -- "and when I die I'm gonna do this" or "I'm not going to do that." Or, you know, "I'm gonna be a role model for how a dying person ought to live out those last few days."

LAUGHTER

MCFARLANE: My brother and I, to whom I dedicate this book, and who cared for my dad and the old people in my family with me -- we have so many schemes hatched for exactly how we're going to do this and who's going to do what when. And I'm also sure neither of our deaths will, you know, look anything like that.

It's interesting. My brother talks about this. We've worked so hard and so long to -- you know, to try to protect the people we love when they were sick. And we've come around to like almost this -- this Catholic understanding of it, that perhaps, you know, some of the suffering really is necessary; perhaps this -- whatever this journey is with this pain and physical indignity is part of the lesson on the way out the door. Who knows?

Maybe that's just because we're getting -- the older we get -- the older we get, the less -- then the more equivocal we get. I used to things -- say things like, you know, "you do not resuscitate me under any circumstances"; you know, "don't put me on the ventilator no matter what happens." Then it becomes "unless it's post-op" and "I'm gonna -- and I might get better."

LAUGHTER

GROSS: Right.

MCFARLANE: You know. So there was actually a very good study done recently where -- where people at the end of their lives were surveyed, and even if it was just a difference of one day or even one week, even with the suffering, indignity, the pain, the nausea -- you know, all of those things, most of them still wanted one more day. It's -- you know, all these things -- all these declarations we make about the way we're gonna die are pretty silly. It's the -- you'll cross that bridge when you get there.

GROSS: Now, you were one of the founding members of ACT UP, which was a group that used very kind of radical militant and theatrical tactics to...

MCFARLANE: I was just going to say "radical militants" -- is a bit strong. "Theatrical's" dead on the money. I led the first demonstration to shut down Wall Street to protest Burroughs-Wellcome's pricing of AZT back in 1987. And a few other times, and that -- but those were also really -- you know, that was the point we were forced to. It was like -- this is old news to NPR listeners -- the government response, the institutional medical response had been exhausted. There was no political leadership.

And then, you know, we realized that sometimes you only got action when you -- when you made it more painful for them -- you know, for the pharmaceutical company in this case, to do the right thing.

GROSS: What do you think of as being the most effective of the actions you participated in?

MCFARLANE: Oh, several of those. You know, everybody has this impression of ACT UP as this, you know, amorphous, unwieldy, disorganized, you know, reactionary bunch of wild-eyed kids. But I gotta tell you, that's where we got accelerated approval and investigation of new drugs; it's where we got these community-based research models; it's where we got -- we opened the tables to negotiating pricing and marketing of drugs. We influenced consumers -- now influenced FDA licensing and NIH research budgets like never before, as a direct result of all of that sort of thing.

So the cumulative effect of those, you know, one-by-one, taking on the NIH, taking on the FDA, taking on the president's AIDS Council, taking on Burroughs-Wellcome -- whoever -- you know, taking on Phillip-Morris week by week by week -- you know, making it painful for people not to do the right thing actually delivered a lot of results, I have to admit.

GROSS: Did you plan to be involved with healthcare professionally? Or, did you just kind of get dragged into this because of AIDS and circumstance?

MCFARLANE: Well, AIDS was the principal determinant. I had worked in the hospital, and after I came out of the service, I worked at a hospital management firm here in the city, but I wasn't ambitious that way. What happened was I knew my way around the hospitals and the medical centers in New York when -- in the earliest days of AIDS, so people started calling me. And there weren't many people who would take those calls.

And eventually, the hotline for the whole nation became my home answering service. And I would literally in the summer of '82, I answered all of those calls every night myself. And that was what gave birth to this extraordinary array of community services, you know, virtually in every major city now, these AIDS service organizations.

But no, I stumbled into it just like, you know, because I had to. Those were our friends and our lovers who were not being cared for, and we had to learn how to get them what they needed.

GROSS: Because there was so much fear of contracting AIDS and so much homophobia in the early days of the AIDS crisis, a lot of people didn't get the treatment that they should have. And this remarkable support network grew up around the epidemic -- the whole buddy system; people just taking care in remarkable ways, of friends and of lovers.

And there was an article not too long ago in the New York Times that kind of said that a lot of AIDS activists were now asking the question: now that this whole kind of like support system was -- you know, has been put in place around AIDS and some of that is being kind of applied to breast cancer and other terminal illness because people learned so much through the AIDS epidemic, is it time to further kind of bring into the mainstream the lessons learned from AIDS, and should AIDS be treated any longer as this kind of like special thing requiring a special kind of care? Or, is it time to just kind of look at the health care industry as a whole and figure out what's wrong with the health system as a whole?

I'm wondering if you read that article and what you thought of it?

MCFARLANE: Yeah, I did, and several -- and you know, this is an ongoing type of debate. Let me take this back to just a very personal example.

GROSS: Please.

MCFARLANE: When we were taking care of my dad down in Alabama, the friends, the neighbors, the people from the church, from the Kiwanis Club would come up to my brother Dave and me and say: "gosh, you guys -- Bob's so lucky to have you -- you guys always seem to know exactly what to do."

And what I realized was having taken care of hundreds and hundreds and hundreds of people with AIDS, that taking care of my stepmom with lung cancer or my dad with lymphoma or my Aunt Margaret with bowel cancer, Uncle Bill with Alzheimer's -- it really didn't matter what disease it was. It meant someone you loved was different and that they were probably going to die and that they depended on you.

And it really didn't matter which disease it was. We're not talking state-of-the-art treatment here. We're talking about diarrhea and nausea and pain and paying the bills and fighting with the doctor and getting them what they needed. And once again, I guess it's almost trite to say, but what we -- what we have in common interests me so much more than what separates us.

And AIDS was different because it was treated differently by the hospitals, by the health authorities. On the other hand, the model we've built for AIDS should also be the model for Alzheimer's and cancer.

GROSS: Is there any last piece of advice about caring for a sick loved one that you'd like to leave us with?

MCFARLANE: Yes. When someone you love is sick, we always focus on what we can do to help them, and that usually takes the form of learning about the disease and looking for the best treatments. And what nobody does, or what very few people do unless you've lived through this, is ask the doctor: what if this doesn't go well; we don't play out the worst-case scenarios and plan accordingly? And only year after year after year of doing this, do you -- do you realize you have to have that Plan B in place, and that's really not just to sell books. I really want people to understand that to protect yourself and to protect the people you love, you have to have a Plan B for when things don't go well.

GROSS: Is there somebody who you're close to now who you're taking care of?

MCFARLANE: Not right this minute. Oh heavens, I'm so -- I'm so lucky. My Uncle Howards has Parkinson's disease and my Aunt Kitty, I promised her if she -- you know, this book -- she stood by us shoulder-to-shoulder through all this. I promised my Aunt Kitty when her time comes, Dave and I will nurse her. But that's it right this minute, and I thank God every day for this season.

GROSS: Rodger McFarlane, thank you so much for talking with us.

MCFARLANE: Thanks for having me, Terry.

GROSS: Rodger McFarlane is the author of The Complete Bedside Companion. He's the former executive director of Gay Men's Health Crisis.

Coming up, we meet Betty Degeneres, Ellen's real-life mother.

This is FRESH AIR.

Dateline: Terry Gross, Philadelphia
Guest: Rodger McFarlane
High: Rodger McFarlane is co-author "The Complete Bedside Companion: No-Nonsense Advice on Caring for the Seriously Ill." It is published by Simon and Schuster. McFarlane is former Executive Director of two of America's most successful and influential AIDS service groups, Gay Men's Health Crisis and Broadway Cares/Equity Fights AIDS. Rodger has personally cared for many sick and dying family members and friends over the past 25 years. McFarlane co-wrote this book with Philip Bashe.
Spec: Health and Medicine; Deaths; AIDS; Homosexuality; Hospice
Please note, this is not the final feed of record
Copy: Content and programming copyright 1998 WHYY, Inc. All rights reserved. Transcribed by FDCH, Inc. under license from WHYY, Inc. Formatting copyright 1998 FDCH, Inc. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to WHYY, Inc. This transcript may not be reproduced in whole or in part without prior written permission.
End-Story: Caring for the Seriously Ill
Show: FRESH AIR
Date: MARCH 26, 1998
Time: 12:00
Tran: 032602np.217
Type: FEATURE
Head: Betty Degeneres
Sect: News; Domestic
Time: 12:40

THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT
BE IN ITS FINAL FORM AND MAY BE UPDATED.

TERRY GROSS, HOST: When Ellen Degeneres came out last spring in real life and on her sitcom, it put her mother Betty in the spotlight. People wanted to know her reaction to her daughter's sexual orientation.

So there can be no doubt, Betty Degeneres has become a gay rights advocate. She's now a spokesperson for the National Coming Out Project of the gay rights group The Human Rights Campaign.

Fans of the sitcom saw what it was like when the character Ellen came out to her mother. I asked Betty Degeneres what it was like when Ellen came out to her.

BETTY DEGENERES, SPOKESPERSON, NATIONAL COMING OUT PROJECT: Twenty-one years ago, we were walking on the beach together at my sister's house on the Mississippi Gulf Coast. And I'm sure it was a big family gathering. We all -- we went there a lot for Thanksgiving and Christmas. And she told me she was gay. And she cried when she told me, I suppose knowing or thinking that I would be very upset knowing the way society feels about this. And we hugged and, I suppose I went through all the emotions that most parents do go through, which is why they can relate to me.

For me, it was a process of educating myself and learning what this really meant, and always accepting and loving her.

GROSS: Until recently, Ellen wasn't out professionally. And I'm wondering if you had certain parameters in your life of people who you could tell and people who you couldn't because Ellen was, you know, becoming an increasingly public person who had this big secret.

DEGENERES: Mm-hmm. Right. Yes, I worked and she was becoming more and more famous, and when people found out that I was her mother, they'd want to know details, you know, that maybe they -- they wouldn't ordinarily know. And of course, they'd always want to know if she was married. And my stock answer was "she's married to her profession; she's married to her career."

So, that was kind of an easy out. My very closest friends knew that Ellen was gay. But as far as just everybody knowing it, either they had an inkling on their own. Certainly there were little leaks in tabloids through the years, and some people said yeah, they could tell that she was. But it wasn't out officially, and Ellen had said up until the time she came out that her private life was her private life, which it is. But there's a difference in that and feeling like you have to hide who you are.

GROSS: What were some of the most surprising reactions that you got when Ellen came out on television? When the character came out?

DEGENERES: I think maybe we were surprised at the positive response. So many people just were so -- so positive about it. They appreciated the quality of the show and her honesty. She was always the girl-next-door-type anyway, and sometimes the girl next door is gay. And that's real life. And I think maybe the -- the really historic nature of it.

We really didn't realize what a huge thing it would be; that it would actually save lives is what Ellen has been told and I have, as I travel and meet people and psychologists have told me this. And it was a big reason she did it, was for teenagers who get such negative messages, and the suicide rate is higher among gay teenagers. And that's why she wanted to come out and show that you can be a very happy, productive, normal person and be gay.

GROSS: Now, I'm also wondering what it's like to be the mother of a daughter who has a sitcom, playing a character very much like herself with parents. So in other words, you have a shadow figure on this sitcom, too.

DEGENERES: Well, in a way, but Alice Herson (ph) is a very good actress, and in fact is a good friend of mine. We've become good friends. And I hate to think that her character is modeled after me in any way, 'cause she's kind of ditzy in ways, and it is interesting to sit there and watch the things they go through, and sometimes they're very funny and Ellen gets -- Ellen Morgan gets exasperated with her mother, which I guess Ellen Degeneres maybe does too sometime, I don't know.

GROSS: Now, Ellen Morgan's mother pressured her to date and to marry and to wear skirts before Ellen Morgan came out. Did you ever do that?

DEGENERES: Oh, maybe I did a long time ago. Of course in high school, she did date and she had boyfriends and wore skirts, as a matter of fact. But then by -- after high school, the boyfriends and the skirts both went by the wayside.

GROSS: You know, I interviewed your daughter a couple of years ago when her book came out...

DEGENERES: Oh.

GROSS: ... and I had -- I had kind of, you know, heard through the grapevine that she was gay, but not out so, you know, I certainly wasn't going to ask her about that. But I did feel in the interview that she had to be very circumspect about what she could say.

DEGENERES: Mm-hmm.

GROSS: And that even a lot of her material as a comic was kind of at arms distance. I felt that maybe there were a lot of things that she -- a lot of like real parts of real life or about her real life that she could really be very funny about, but that she couldn't talk about for fear of betraying her secret. And I'm wondering if you think there's much truth in that?

DEGENERES: Probably. I think there probably is, especially back when she was doing standup, and so many of the comedians, you know, did sexual jokes and female comedians especially did typical female things, and the boyfriend things. But her's was always more just her musings on her skewed outlook on life and in everyday situations. And I think people always appreciated that.

GROSS: So it must have been hard for her as a comic, though, to not be able to do this kind of first-person observation humor that most comics can do.

DEGENERES: Well, but she did, just in different areas. You know, like with waiting for elevators or the -- or the airplane, you know, humor -- her jokes and her phone call to God which was so popular.

GROSS: Well, OK, let me stop you right there. The phone call to God -- this is one of the -- this is one of the monologues that helped establish her, and the phone call to God was really about a roommate who was killed in a car accident when Ellen was, I guess, in her 20s.

DEGENERES: Mm-hmm.

GROSS: And the phone call to God is basically talking to God about, you know, how come this wonderful person was taken by you, and all these kind of like fleas and lice get to live?

DEGENERES: Right. Except she never said that part. She just asked why there were fleas? She didn't, you know, say that other part, but that is what brought it on.

GROSS: But she wouldn't ever say that this roommate was also her lover.

DEGENERES: No.

GROSS: So -- so even that routine, which established her, had something very private and hidden at the center of it.

DEGENERES: Mm-hmm. Mm-hmm. Yeah. Right.

GROSS: So the last I heard, Ellen's ratings weren't as good as hoped, and the show seemed to be in a little bit of danger. What are your feelings about that?

DEGENERES: Well, that's the last I've heard, too. Ellen has not had the official word from ABC. Her own feeling is that it is not coming back in the fall, and she'll be moving on to other projects, which is sad. She really wanted to come back for one more year, and that would have been really, really nice. You know, they wanted to end it in a way that made sense. But, it's looking like maybe it won't come back.

GROSS: What impact did Ellen's success have on your own self-image and on your own goals for yourself, when you saw how far she could go?

DEGENERES: Oh, that's interesting. I think I accomplished a few things, but certainly nothing like she had done. And I was there from the very beginning, you know, of when she appeared at a coffee house at the University of New Orleans and just starting out and watching it grow just little by little -- just gradually achieving what she has. It was really something.

I'm kind of a late-bloomer. I only went to LSU in Baton Rouge for two years, way back right after high school. So, I went back to college after I was 50 years old and got my bachelor's degree. And then went to graduate school and got my master's and became a speech pathologist and practiced for, oh, 10 years or so. I just retired from Cedars Sinai out here about two years ago, and have been practicing privately and on call at the hospital as they need me.

But now, with all of this, I had to really retire. So, we kind of keep busy in our family.

GROSS: Well Betty Degeneres, I want to thank you very much for talking with us.

DEGENERES: Thank you, Terry. It's been delightful.

GROSS: Betty Degeneres is spokesperson for the National Coming Out Project of the gay rights group The Human Rights Campaign.

The sitcom Ellen is on hiatus until April 22, but ABC says this is subject to change. They're filming new episodes to finish out the season. ABC will decide in May whether to renew the show for next season.

Coming up, a review of Bill Moyers' new series on addiction.

This is FRESH AIR.

Dateline: Terry Gross, Philadelphia
Guest: Betty Degeneres
High: Betty Degeneres talks about her life before and after her daughter Ellen Degeneres publicly announced that she is a lesbian. Betty Degeneres is now the spokesperson for the National Coming Out Project for the Human Rights Campaign. HRC is the nation's largest national lesbian and gay political organization. National Coming Out day is celebrated every October 11.
Spec: Media; Television; Ellen; Family; National Coming Out Project
Please note, this is not the final feed of record
Copy: Content and programming copyright 1998 WHYY, Inc. All rights reserved. Transcribed by FDCH, Inc. under license from WHYY, Inc. Formatting copyright 1998 FDCH, Inc. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to WHYY, Inc. This transcript may not be reproduced in whole or in part without prior written permission.
End-Story: Betty Degeneres
Show: FRESH AIR
Date: MARCH 26, 1998
Time: 12:00
Tran: 032603NP.217
Type: FEATURE
Head: Close to Home
Sect: News; Domestic
Time: 12:55

THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT
BE IN ITS FINAL FORM AND MAY BE UPDATED.

TERRY GROSS, HOST: Sunday through Tuesday nights, PBS presents the latest Bill Moyers TV series. It's called "Moyers On Addiction Close to Home" and it's a five hour look at how people become addicted, how it affects them, and what if anything can be done about it.

TV critic David Bianculli has a review.

(BEGIN AUDIO CLIP, "MOYERS ON ADDICTION: CLOSE TO HOME")

UNIDENTIFIED FEMALE: But hers was always ...

DAVID BIANCULLI, TV CRITIC: Bill Moyers doesn't take up much air time in this new PBS series. Most of the time, he's content to sit off camera and coax people into telling their stories, or gently prod scientists into explaining their latest discoveries and theories.

But when Moyers does take center stage, he's very effective and very daring.

At the end of the series, Moyers steps up and takes a tough stance regarding the effectiveness of America's war on drugs. "Our policymakers are like addicts in denial," he says. He also says: "the drug war has become the Vietnam of our time. We keep doing the same thing, expecting different results."

It's quite a personal ending for a PBS documentary series. And Moyers starts it off with an even more personal beginning.

BILL MOYERS, TELEVISION JOURNALIST: My wife Judith and I felt we knew about addiction until it came close to home, then we discovered just how naive we had been. Ten years ago, our oldest son plunged into a long and painful struggle with drugs and alcohol. Our entire family was swept into the ordeal. It's come to a happy place for us, fortunately, and our son is doing well. Many others are not so lucky.

What we have learned from our experience and are still learning prompted this series. It's not about the use or even the occasional abuse of a substance. We're talking about that obsessive desire where a chemical you take, drink, or smoke becomes the master of your mind and the tyrant of your life.

That's what we'll be reporting -- the experience of addiction, how it happens, and what can be done about it.

BIANCULLI: Each of the five episodes of Moyers on Addiction hones in on one particular aspect of drug addiction. The first episode devotes itself entirely to just listening to recovering addicts telling their stories. And Moyers gets some real insight from them and some real poetry too.

One person likens the way people treat you at a recovering addicts meeting, like Alcoholics Anonymous, to the supportive way people band together after an earthquake. After the disaster, you start digging people out. And another addict compares first-time AA visitors, with their shaky hands and nervous mumbling, to villains from "Dick Tracy."

Interviewing addicts, even recovering ones, is nothing new, but Moyers clearly reaches these people as he interviews them. He also does one thing in the show that's simple, but brilliant. We listen to these folks for an entire hour before they're identified. Only at the end do we learn who they are, what they do, and how long they've been in recovery.

We get to know them as people on an equal footing before getting to all that other stuff.

Other hours are organized just as thoughtfully. The second hour looks at the chemical reactions drugs cause in the mind and body, and even shows a before and after experiment where a test subject is given drugs as her brain is photographed by a series of CAT scans. It's a literal visualization of that old public service announcement: "this is your brain. This is your brain on drugs."

The third hour, perhaps the most personal for Moyers, revisits one of the drug clinics that treated his own son. The fourth hour looks at the future and visits children who live in homes where one or both parents are drug addicts. Here, too, the secret is that Moyers steps back and listens and gives people the time to reveal themselves, including the obviously conflicted parents of a 10-year-old boy named T.J. We hear the parents first, then the boy.

(BEGIN AUDIO CLIP, "MOYERS ON ADDICTION: CLOSE TO HOME")

MOTHER: I see it affecting him. I do. He isn't able to ...

FATHER: I didn't say that it didn't affect him. I was saying that...

MOTHER: No, but I just don't think he's able to have a childhood as he should be having a childhood -- carefree.

FATHER: I'm sure -- yeah, he...

MOTHER: He's too worried about us.

FATHER: Yeah, he's had to take on a lot of responsibility. I'll give you that, but ...

MOTHER: Taking care of me, you know, which a 10-year-old shouldn't have to worry about -- taking care of his mom and dad.

FATHER: No, no -- that's true. He's never going to take care of me. He's taking care of you.

MOTHER: He's taken care of you a lot. He saved your damn life.

CHILD: I know they're trying to teach me not to do drugs. And they are doing drugs, but not my mom. I know my dad's trying to get on methadone, but not as quick as I want him to. I don't think he's doing the very, very best he can. I know that I still got faith, but I don't know if it's going to help him.

BIANCULLI: Finally, the fifth hour, called "The Politics of Addiction," looks at what our government is doing and not doing to solve the drug problem. Moyers by this point seems positively impatient with our country's current efforts. And after watching this series, you may share his frustration.

GROSS: David Bianculli is TV critic for the New York Daily News. Moyers on Addiction: Close To Home airs Sunday through Tuesday nights on many PBS stations.

Dateline: David Bianculli, New York; Terry Gross, Philadelphia
Guest:
High: Sunday through Tuesday nights, PBS presents the latest Bill Moyers TV series. It's called "Moyers On Addiction Close to Home" and it's a five hour look at how people become addicted, how it affects them, and what if anything can be done about it. TV critic David Bianculli has a review.
Spec: Media; Television; Health and Medicine; Drugs; Bill Moyers

Please note, this is not the final feed of record

Copy: Content and programming copyright 1998 WHYY, Inc. All rights reserved. Transcribed by FDCH, Inc. under license from WHYY, Inc. Formatting copyright 1998 FDCH, Inc. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to WHYY, Inc. This transcript may not be reproduced in whole or in part without prior written permission.
End-Story: Close to Home
Transcripts are created on a rush deadline, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of Fresh Air interviews and reviews are the audio recordings of each segment.