NEAL CONAN, host:
This is TALK OF THE NATION. I'm Neal Conan in Washington.
For the millions of Americans caring for a loved one with Alzheimer's disease, communication can be emotionally exhausting. Feelings and thoughts run rampant for the patients. They can swerve rapidly between past and present, reality and fantasy, calm and anger, and memory becomes increasingly elusive. Caregivers can find themselves caught in the middle. If there is bad or maybe just disturbing news, the patient doesn't remember, or doesn't know. Is it compassion to skip it or lie about it, or is that just a lie? If you're in this situation, our phone number is 800-989-8255, email us: email@example.com.
You can also join the conversation on our Web site, that's at npr.org, click on TALK OF THE NATION. Later in the program, Dan Neil joins us to talk about emissions, fuel economy standards, and the price we may all have to pay for the Obama administration's new policies. But first, Ron Bel Bruno joins us. In this week's issue of Newsweek, he wrote about a conversation with his father, who suffered from Alzheimer's, a conversation that forced him to relive one of the more stressful days of his life and a talk peppered with the same, repetitive questions: Where do you live? Have I been to your place? Are you married? Bel Bruno came out of the closet for the second time to his father. Ron Bel Bruno is senior vice president and editorial director at HNW, and joins us now from NPR's bureau in New York. Nice to have you with us today.
Mr. RON BEL BRUNO (Senior Vice President, HNW): Hi, Neal. Thank you.
CONAN: And you wrote that there was a moment when you thought, you know, just might have told your dad a fantasy that he might like to hear.
Mr. BEL BRUNO: Yes, you know, because we were driving back from the doctor and we were in the car. And I was pretty accustomed to the typical battery of questions about where I live and what I do for a living. But then I noticed that he was veering into a special territory that he sometimes would go into. And yeah, you definitely have those moments where you see kind of a fork in the road and you say, well, I can just humor him, or I could just lay it all out here. And I think in retrospect at that, in that particular conversation, unlike many others, I felt the need to be truthful. And I didn't know quite the result I would get, and as it turned out, he was rather indifferent and very complacent.
CONAN: Hmm. A result very different from the first time you came out.
Mr. BEL BRUNO: Very different, very different. You know, the first time was much more emotionally loaded and, you know, he was reacting to, you know, to the kind of biases that were stereotypical of his time and place and…
Mr. BEL BRUNO: And - but very much like he was. After that initial conversation, it was never mentioned again and we sort of - we sort of just reverted back to an earlier time. Just without conversation around that area, quote-unquote, of my life.
CONAN: And then you were in the car driving with him. This time, I assume you were the one who was driving.
Mr. BEL BRUNO: Yes.
CONAN: And he starts going there and you'd - have to think you're saying to yourself, you know, boy, do I have to go through this again?
Mr. BEL BRUNO: Yeah, I have to admit that there was a part of me reliving, you know, the time it happened 11, 12 years before. And I felt the hesitation, but then I realized that it wasn't quite the same anymore, and maybe it would honestly be good for me to just say it, to say in a calmer way with frankly, less trepidation or fear. And I just had this gut feeling, and this is pretty much what inspired me to write the piece, was that the answer I got the second time was really closer to the truth.
CONAN: He took it much more calmly.
Mr. BEL BRUNO: Yeah. That perhaps without the layering of some of those cultural influences, that he was now sort of - you know, rather immune to, that he was just indifferent to it, and that it really didn't matter all that much. And I mean, to be honest, I think our differences as people were greater than that topic. And I think he was just owning up to that in a very nonchalant way that was very refreshing to me.
CONAN: Hmm. And your father passed away last year, and…
Mr. BEL BRUNO: Yes.
CONAN: Would there be other circumstances in which you might have gone the other route, other topics that you might have said, you know, hey, let's just let the fantasy exist.
Mr. BEL BRUNO: We actually did. Basically, these were white lies that we conspired to keep with him, to keep him feeling calm and secure. And I emphasize these were - these were the kind of lies that the consequence was good. For example: when he was well into his disease, we sold the family home. And you know, he turned to me one day in the role that he perceived to be as, you know, some family friend, because he didn't really know me as a son anymore, and he said, how much did we get for that house? And I said $5 million. And he just, ohhhh, and his face just lit up. And he was like, oh, good. And, you know, and my mother was like, don't do that. That's not nice. And I said, no, no, this isn't about nice and not nice, this is about the fact that he worked hard to provide for himself in his older age, and he succeeded. And he is well taken care of, and he will be forever as long as he lives, and he needs to know that - like, however we get there is okay.
CONAN: However we get there is okay. Other circumstances you could imagine saying the same kind of, as you describe them, white lies.
Mr. BEL BRUNO: Yes.
Mr. BEL BRUNO: Yeah. There were many cases - I mean, you know, he constantly talked about his parents and going to visit his parents, and I'm going to go see my parents this afternoon, you know? And my grandfather passed away 30 years ago. And I would just say, that's great, give them my regards. You know, because even if I told him, your parents died in 1952 and 1979, he'd forget that in five minutes, anyway, and he might be upset in the moment.
CONAN: And does the stage of the disease play a factor in what you tell him and when you tell it?
Mr. BEL BRUNO: Certainly. Earlier on, he - his early stage was a rather belligerent period where - I think it was a long period, actually longer than we initially realized, where he had full knowledge of what was happening. He was very well-read, and I think it was a - it was an internal struggle for him. And when you would correct him on something or as it later started to become, tell him he couldn't drive, there was a lot of hostility. So you had to choose the battles much more carefully there and choose the lies because some were, in fact, benign. You know, things that - again, I usually gauged it by what's the consequence. You know, will he do something differently? Will he become agitated? You know, where will this get us on the other side?
CONAN: We're talking with Ron Bel Bruno, senior vice president and editorial director at HNW, about a piece he wrote for Newsweek magazine titled "Do We Need To Go There Again?" about talks with his father, who had Alzheimer's disease; 800-989-8255, email us: firstname.lastname@example.org. And let's start with Nicole. Nicole with us from Cincinnati.
NICOLE (Caller): Hello. Thank you for letting me join your show today.
CONAN: Well, thanks for calling.
NICOLE: Just wanted to say that I'm a caregiver at the VA and deal with Alzheimer's and age-onset dementia on a day-to-day basis, and just find that it is necessary to lie to your patients at times, to lie to your family and say that - to be untrue because it's the most compassionate thing to do.
CONAN: In all circumstances, Nicole?
NICOLE: When a patient asks me if they're dying, or if they're going to go home, or what's going to happen next, that's about the only thing I can't, as a human being, lie to somebody about.
CONAN: Even though it's going to be disturbing news.
NICOLE: Correct, I - because I can still see that part of them - you don't ask that question unless you want to know in some way.
CONAN: Did that ever come up with your father, Ron?
Mr. BEL BRUNO: Yes, he at several periods when he was first going to his first nursing home, he did ask, you know, where am I, am I going home? We would say, Sure, you know, it's a temporary thing, you know, it's -this will pass, we'll see how things go. And that was a half-lie because I think there was always the possibility that if it didn't go well, that we would take him back into home care.
NICOLE: Try to make that work.
Mr. BEL BRUNO: Yeah, yeah, we - my mother was very committed to making that work, but she has her own ailments, and it became physically impossible for her to do it, and it really wasn't logistically optimal to have somebody 24/7 in the condo with her. So yeah…
CONAN: Yeah, yeah. Nicole, thanks very much for the call.
NICOLE: Thank you.
CONAN: Bye-bye. And I guess one of the questions I have, Ron, is the conversations you've had with your mother, who as you mention, has her own ailments. And is she now concerned you may lie to her?
Mr. BEL BRUNO: Well, you know, my mother's a very aware person. She's very confident of that awareness. Sure, I mean, I guess as a parent, she might. She might look at me askance and say, hmm, don't ever do that to me. But I think that, again, I think she knows in retrospect that the way I was doing it with my father was for his own best interests.
I think initially - I think initially when a parent hears you lying to the other parent, it's misperceived. She at first thought we were making light of it, and I said, no, you don't understand. This isn't about humor. This is about the end result.
CONAN: And when it came up to the question of, well, the essence of your nature, that was when you couldn't lie.
Mr. BEL BRUNO: Yeah. That's I guess where, you know, my person just couldn't step away, you know, my ID. You know, I - my ego could not go unacknowledged, you know, for lack of a better way to put it. You know, it was apparently necessary for me.
CONAN: Stay with us. We're talking with Ron Bel Bruno about caring with people with Alzheimer's, in case - his father who passed away last year. Have you been in a similar situation? Tell us your story, 800-989-8255, email email@example.com. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.
(Soundbite of music)
CONAN: This is TALK OF THE NATION. I'm Neal Conan in Washington. We're talking about how we talk with family and family members who suffer from Alzheimer's. More than 4 million people have the disease in this country, and caregivers can find themselves caught in the middle - what to say, what to leave out.
If there's bad or maybe disturbing news, the patient doesn't remember or doesn't know about a death in the family or a divorce or a bankruptcy. Is it compassionate to skip it or lie about it - or is that just a lie?
If you're in this situation, give us a call, 800-989-8255. Email us, firstname.lastname@example.org. You can also join the conversation on our Web site. That's at npr.org. Click on TALK OF THE NATION.
And our guest is Ron Bel Bruno, who wrote about his experience talking with his father, who suffered from Alzheimer's. We have a link to his piece, titled "Do We Need To Go There Again?" at npr.org. Just click on TALK OF THE NATION.
And let's see if we can get another caller on the line, and let's go to Canaan, Canaan with us from Burnsville in North Carolina.
CANAAN (Caller): Hi Neal. Hi Ron, how you guys doing?
CONAN: Very well, thanks.
Mr. BEL BRUNO: Great, thank you.
CANAAN: What actually happened, I'm in my mid-20s now, but my great-grandmother had Alzheimer's, and she died in November of 2000. So I was still in my mid-teens, but the last year or two especially was very difficult.
What happened with her is she would - basically she was living, you know, 30 years in the past, like you had mentioned about your dad, Ron, and what I found with her is that a lot of times, you know, she would confuse family members, think that her granddaughter - my mother - was actually her sister, and that I was my uncle, and a lot of times we wouldn't confuse those things - or we wouldn't set straight those confusions, rather. And as far as lying or making up facts to tell her, I personally have never been able to do that in good conscience because I have always based my decisions even, you know, as a teenager on the principles that are found in the Bible, and one of those was not to lie and to speak truth with our neighbors.
But another principle that's also very important is actually in the book of Proverbs 15 Verse 1, I think, that talks about a word causing pain makes anger to come up. So we noticed with her, she had led a very hard life and so she was a pretty stubborn woman. Of course, the illness made it worse.
So we would be careful not to speak anything to her that wasn't true, but also not to say things that we knew would hurt her, and I remember one time that my mother was having a particularly difficult time with it. She was in her 80s, and she showed her herself her reflection in the mirror, and she said I'll never do that again because it obviously caused her so much pain. When you think you're this 50- or 60-year-old woman and you look and there's this 80-something-year-old staring back at you, so…
CONAN: And so omissions rather than straight-out lies.
CANAAN: Or if she mistaken - most of the time is was about, you know, mistaken identities. We would just let it go, you know. She called me by my uncle names, but I never did anything to deceive her, or I never spoke anything to her that wasn't true, but if she believed in like -like Ron said, you know, in five minutes they're not going to remember anyway, so if she would speak anything, then I wouldn't feel the need to correct her because it would just upset her more.
CONAN: Yeah, that kind of conversation must sound pretty familiar, Ron.
Mr. BEL BRUNO: Yes, in fact what it makes me recall, actually, is that I did have some practice with this because my father's father, when he was in his last stages of life in the mid-'70s, now I see it was also Alzheimer's, but of course we didn't call it that then, and I would have similar conversations with him when he was at his nursing home, and he would talk to me as if I was my father at, you know, 14, you know, back in the '30s.
So he would talk about the radio and about, you know, his job, and I would just go along with him, and what's interesting to me is how we never questioned doing that with my grandfather, whereas with my father it was a very significant debate because, you know, my grandfather was a - you know, he didn't speak English well. He had a very simple life later in life because he didn't have a lot of entanglements financially like my father did, you know, or financial commitments, holdings.
So I think we regarded him differently, whereas with my father, you know, it was - you know, he was the head of the household, and he had built a business, and you know, he was a very active member of the world.
CONAN: Canaan, thanks very much for the call.
CANAAN: Thanks. You guys have a good day.
Mr. BEL BRUNO: Thank you.
CONAN: Here's an email - Darlene in Portland, Oregon. Did you learn, Ron, specific methods to cope with agitation? I find this to be the hardest aspect of this disease to deal with. Mom will become worried about something and will call me every few minutes with the same question. Usually she's concerned about whether or not she can afford to live where she is currently living, and she adds that she can afford it.
Mr. BEL BRUNO: Well, in our particular case, and I'm sure it's different with everyone, but my mother said that he always responded better to men, that she would tell him something, or the caregiver that they had there part time would tell him something, and he wouldn't listen. But if my uncle came in, or if I came in, and said, Jim, you know, why don't you just try to sit down and have your lunch? He'd like, oh, okay. You know, he - you know, and that was just our system, you know, that he seemed to respond better to another guy saying, you know, why don't you try this, Jim, you know, or he just was less agitated in that way. And if you spoke to him calmly and repeated something a few times, he would eventually go with you.
CONAN: Joining us now is Joanne Koenig Coste. She is the author of "Learning to Speak Alzheimer's," with us from her home in Massachusetts. It's nice to talk to you again.
Ms. JOANNE KOENIG COSTE (Author, "Learning to Speak Alzheimer's"): Hi, Neal, nice to talk to you.
CONAN: And the last time we spoke, you were the one who brought up the idea of compassionate lying. I know you've been listening to a little bit of this conversation, and a lot of people are uncomfortable with the idea of telling somebody who is effectively helpless an untruth.
Ms. COSTE: Yeah, yeah, but you know, I think it's about choice, Neal. We have a choice all the way through this, and I think one of the biggest choices is what kind of a day are we going to have? What kind of a week are we going to have? And that can be solely based on what our interaction with the Alzheimer person is.
Now, the choice is, do we chance a lie to them that makes them happy and makes us happy as a result of that and a nice homogeneous setting, or do we say this is the truth, mom, you know, this is really what happened, this is what you need to know because I promised I would never lie to you?
Mom never promised never to have Alzheimer's, I think. I think - what's our goal? I think that's the question every care-partner needs to ask themselves. What is our goal? The goal I always try to teach people is to have a good day today, and if it means doing these little things that we might not have done once upon a time, well, this is once upon another time.
CONAN: Does that - do you fear sometimes that might lead you or others down the road to situational ethics that…
Ms. COSTE: I don't, and I'll tell you why. I think there is a time and a place to do this. I think one of the mistakes we make is people hear people like me saying, you know, it's okay to use a fiblet, a little lie, a therapeutic lie. But in fact, it depends on where is the patient in the disease process.
Now, if Mom is still able to drive down to the corner and back, she is not the person we're going to try lying to. As a matter of fact, we probably have to bend over backwards the other way. And then there's this little period of a kind of suspicion that happens, almost a paranoia. Well, that's another place where we have to gauge how we're going to lie or not.
If the person knows outright that we, in fact, are fibbing to them, that's not going to work, and shame on us for trying. However, try once before you give up, and then you try again.
(Soundbite of laughter)
Ms. COSTE: You try again later. You try again next week, and when it works, then you realize that you have chosen another road, and it's a road that can be fairly pleasant. Different? Oh yes. Not the same road we've journeyed together once upon a time, but one that can be every bit as salubrious - if not more so.
CONAN: Let's get Michelle(ph) on the line. Michelle is calling us from - is it Methuen in Pennsylvania - in Massachusetts, rather?
MICHELLE (Caller): Yeah, Methuen, Mass. Actually, I (unintelligible) listening to your speaker. I absolutely agree with her. As a caretaker and as someone who has actually researched the disease and has someone in the family with the disease, I totally agree. You have to pick who you can tell these little white, therapeutic lies to. You have to learn the disease process.
As a nurse, you know when you have a patient, even if it's for that day, you really need to know and try to find out what process - or where the patient is at in the disease process. Again, like she said, I'm going to echo her a little here. You cannot tell a white lie to somebody who's going to go out and, you know, and remember the next minute.
Ms. COSTE: Absolutely. They'll never listen to you again, will they, Michelle?
MICHELLE: Exactly. They will never listen to you again and plus, it's not right. It's not right. Part of taking care of a patient is not to lie to them. However, like Ron said, if you have a patient that's not going to remember for the next second, do you really want to, you know, make them unhappy for just that second? No.
Ms. COSTE: Exactly, Michelle. I'll tell you the question that I hear most frequently, and it is: Do I tell my Alzheimer parent, let's say, do I tell my Alzheimer parent that her spouse has died? They've been married for 62 years. How do I tell my mom with Alzheimer's that Dad has died, and do I, or do I lie about it so that she doesn't have all that extra pain?
And my response is going to almost always be the same, and it is that if in fact your loved one hasn't been told, they need to be told. They need the opportunity to grieve, to mourn, just as we do. Remember these people are adults. They are the survivors so far, too, of another world indeed. They are the survivors. So, the question becomes…
MICHELLE: (unintelligible) agree with that. I mean, yes, and the death in the family - even if - in that case, yes, I do agree. (Unintelligible)…
Ms. COSTE: But we tell them once, and I think that's the important…
MICHELLE: Yes, I would tell them.
Ms. COSTE: Well then tomorrow...
Ms. COSTE: …when somebody asks, when, you know, when Mom is asking again, where is Dad? He'll be right back. He's gone to get the coffee.
CONAN: Yeah. Michelle, thanks very much. Appreciate it.
MICHELLE: You're welcome, Neal.
CONAN: Here's an email from Collin(ph) in Florence, Kentucky. When my grandmother had Alzheimer's, we would frequently have the same conversation multiple times in a 10-minute span. As we cycled through them, they become more and more fanciful, just as a way to find something new to talk about.
She would also talk about going to see my grandfather. When we reminded her that he was dead and she'd been to the funeral years ago, she was perfectly able to keep both concepts in mind at once - that he was dead, he'd had a funeral, and that he was coming by to pick her up to go to dinner.
Ms. COSTE: Mm-hmm.
CONAN: So, that's the way it worked…
Ms. COSTE: You know what, it sounds to me = the bottom line is that Grandmom was happy.
CONAN: That's it, yeah.
Ms. COSTE: And that's the goal.
Ms. COSTE: How do we keep somebody happy?
Ms. COSTE: You know, you've heard me say this before, Neal, that I don't think Alzheimer's will ever take away somebody's dignity, but I think we will. I think we are the ones who do it. And a loving family does it unintentionally. Professional people do it. We just want to do everything right. We want to be the loving, loving care partners. But there are times when we have to do it in a way we have never done it before.
CONAN: We're talking with Joanne Koenig Coste and with Ron Bel Bruno about, well, talking with Alzheimer's - patients with Alzheimer's, loved ones with Alzheimer's.
Do you tell them uncomfortable, unhappy truths, or do you deliver some therapeutic lies? If you'd like to join us: 800-989-8255. Email us: email@example.com.
And you're listening to TALK OF THE NATION from NPR News.
Let's get Stephanie on the line, Stephanie with us from Sacramento.
STEPHANIE (Caller): Hi.
CONAN: Go ahead.
Ms. COSTE: Hi, Stephanie.
STEPHANIE: I must say I absolutely agree with the use of a compassionate lie, because I've been there with my grandmother. My - she kept going back in time, and so I became my mother and then I became her sister. And then she thought I was her mother.
And my mother, her daughter, was trying to argue her into being well, and she kept saying, well, no, don't you remember, your mother died many years ago. And every time she told my grandmother that, my grandmother experienced the loss for the first time all over again. It was new to her every time she heard it, and she went through the same reaction you would go through if you just heard someone had died - every time.
Ms. COSTE: Yes. And I think that's cruel. I think if we're thinking about the things that we might think of as not being the right things to do when it comes to morality or something to that avail, but in fact this is the right thing to do.
And you know the darnedest part, when we do use the right fiblets at the right time, we make the patient happy, we then make ourselves happy because the patient is happy, and it's a win-win situation.
You can create all kinds of dialogue with an Alzheimer person - one foot in reality and one anise cupcake, you know? And it's not important…
STEPHANIE: My grandmother and I had some wonderful…
Ms. COSTE: Oh, I bet.
STEPHANIE: I did not correct her about who I was.
Ms. COSTE: Yes.
CONAN: Stephanie, thanks very much.
STEPHANIE: Oh, you're welcome.
CONAN: Which leads to another question. And Ron Bel Bruno, I wanted to ask you this.
Mr. BEL BRUNO: Sure.
CONAN: If it comes to it - we may all be there someday - do you want to be lied to?
Mr. BEL BRUNO: Yes, I do. I most certainly do because if I'm living in the moment - and that's what this disease is about, in many cases, you're living in the moment of your emotions - I want those emotions to be pleasant ones.
CONAN: What about you, Joanne?
Ms. COSTE: Well, I'm in complete accord with Ron, complete accord. I think that that is what it's about. We waste so darn much time looking back at who somebody used to be that we're missing all these great moments that we have right here, right now.
It's about living in this moment. This moment isn't always going to be a beautiful, sunny day. There are going to be a few clouds out there and a few other things. But make the best of it that you possibly can because this is all we got.
CONAN: I end with this email from Mary Ann(ph) in New Orleans. I run Alzheimer's Services of the Crescent City, a nonprofit for families of people living with Alzheimer's disease.
In the support groups and the lectures we have sponsored here in New Orleans, one of the things we as loved ones of people with dementia were told not to lie but not to tell all the facts. Too much information is overwhelming to people living with this type of memory loss. Also, they relive the grief or anger or overriding emotion.
If they ask about a person, say they're not here, they're out, they're sleeping. With Alzheimer's disease, where the brain is not going to be able to hold on to the information, why distress them? Also, the repetitive questions often mask a person's underlying need. Perhaps they need attention, a reassurance. A little creativity in meeting their emotional need could also open up new avenues of communication.
And I guess, Joanne, we get back to the point of their emotional need, and it's an emotional truth that you talked about.
Ms. COSTE: And I think that's very important that your listeners realize that we can talk about all the losses associated with Alzheimer's. The emotions stay intact. And they're grown-up, they're adult, and we need to treat people as if they are adult and grown-up.
Are they going to have some childlike behavior? Absolutely. I'd give anything to have some childlike behavior once in a while. I think it's a good thing. I think it's a good thing. It's the way we look at it that's not so hot. She said lots of things that made very good sense to me. And it's interesting that it's coming from a community that does Alzheimer care.
Ms. COSTE: And I think that if we had this conversation 10 years ago, we would be an entirely different place, you know?
CONAN: It's interesting. It might be added that lie-to-me-if-necessary might be added as part of people's living wills, along with the do-not-resuscitate orders and that sort of thing.
Ms. COSTE: Yeah. Even though we wear these masks every day of our life, every time we go out we have a little mask on, and we don't realize we do, but it's just our way of life - until we have Alzheimer's. The mask disappears, and what you see is a person exactly as they have always wanted to be but have lost some of the facade, some the control, you know, all those things that keep us from not going balmy.
CONAN: Joanne, I'm afraid we're going to have to end it there. Thanks so much for being with us today.
Ms. COSTE: Indeed.
CONAN: Joanne Koenig Coste is author of "Learning to Speak Alzheimer's." She joined us by phone from her home in Boston. And Ron Bel Bruno, senior vice president, editorial director at HNW, a financial services and marketing firm, thank you for your time today.
Mr. BEL BRUNO: Thank you, Neal.
CONAN: And when we come back, we'll be talking with Dan Neil about the new automotive standards policies of the Obama administration.
This is NPR News.
NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.