Anne Strainchamps: So, how do you even begin to have these kinds of conversations? What do you ask? And how? Psychologist, Lani Leary, has sat with hundreds of dying patients and their families. Her book is called "No One Has To Die Alone" and she told Steve Paulson that she learned early on, the cost of not talking about death.
Lani Leary: When I was 13 years old my mother had an illness for quite some time and in my family no one talked about her illness. It felt as though the rug had been pulled out from under us. She was there one day and gone the next um, taken to the hospital and I was not able to see her in the hospital. I wasn't able to say goodbye and she was dead two days later and my father did the best job that he could but, there was no information as to, how she died, why she died, so in the absence of information, I filled in the blanks.
Steve Paulson: What did you think happened?
Leary: Well, I was a typical 13 year old trying you know, to find my own independence in my own way and so probably a week before she died I clearly remember. I can close my eyes and still see it and feel it, um, she was at the kitchen sink and I was passing through the kitchen. She turned around and she said to me, "Lonnie, I love you so much."
And I just kind of rolled my eyes you know, as a 13 year old would and just kept walking and a week later when she died, in my mind I made up a story that she didn't fight to live because she didn't think that her own daughter loved her and I lived with that, um, guilt and regret and remorse, on top of the grief for years and years and years. And she died in the hospital and no one told me how she died and-
Paulson: So she had died. I mean ,your father came home, your other relatives came home to tell you...
Paulson: ...this shattering news. They didn't explain what happened?
Leary: No, they didn't. No. I believe that they thought they were trying to protect a child. I know they meant well but it wasnt helpful. I also believed that mother died alone on the operating table and it was 15 years later that my father made some mention of being with her as her eyes rolled back in her head and hr heart stopped and my reaction was anger. I said, "Do you understand that for all these years I had this horrible image of my mother dying alone?"
Paulson: So if you could rewind the clock and do it differently, um, how do you wish you mothers death had been handled?
Leary: Oh, well, I wish that after my mother had been taken to the hospital that I was taken in to be at my mothers bed side, whether she was conscious or not, so that I could have told her loved her or I could have said good-bye. I wished that they had given me information about the illness she had and that it was expected that she would die. So that I had time to, time to get use to that fact and um, I wished that I had been there holding her hand and then after she died I wish that, I wish that people had asked me questions, "What're you thinking? What do you believe? What're you feeling?" And just, had really been a presence through my grieve but I felt very very alone.
Paulson: Oh and then it's striking of course that you since have devoted your whole life basically to working with people who are dying. I mean both those who are actively dying and those who have been left behind, who are grieving. I mean that's what you've devoted your career to.
Leary: And hence the title of my book that we don't have to be alone, we don't have to be alone in our dying and we don't have to be alone in our grief and when we're not, it makes a difference.
Paulson: Well then I know you were very involved, years later, when your father died. I mean as...
Paulson: ...he was approaching death you and he talked a lot about it.
Leary: Um, yes I really spent the rest of my life learning everything I could about death and dying and grief and I vowed, no matter where I was that I would drop everything if my father became ill and it happened exactly that way. I was living and working in Virginia and my father was in Hawaii and I got a call from him saying that it wasn't pneumonia that he thought he had, in fact it was late stage lung cancer and so I closed my practice and I closed my university class and I flew home to be his primary caregiver and um, we began talking about everything. I laid it on the table and I asked him very direct questions such as, "Where do you want to be? Who do you want to be with you?" And "Let's make a bucket list. We don't know how much time you have left but let's make this quality time, let's make this the best time of your life. Lets make it intimate, lets make it rich, let's make in authentic." And...
Paulson: Were those hard conversations to have?
Leary: Not for me they weren't.
Paulson: What about for your dad?
Leary: No, actually you know, in my experience at the end of life is that they are so hungry for someone to start the conversation, they want to talk about it but most of them feel alone with the reality of whats really going on. Um, in other words, there's a big elephant in the room and everyone is walking around it.
Paulson: So the lesson here is communication.
Leary: Mm-hmm. We do.
Paulson: We have to have the conversation that probably many of us are more scared of then any other conversation we can have and you're saying, "It's not just talking with people who are getting ready to die."
You're saying, "We've got to talk to our children about it too."
Leary: I have been talking to my daughter since the time she was five years old.
Paulson: When she was five?
Leary: Well, I'm just interested in the subject.
Paulson: [laugh] And what do you think your daughter took away from those conversations?
Leary: Ease. So that even now later, shes uh, 32 year old woman in a very dangerous job on the ocean.
Paulson: What does she do?
Leary: She's an officer in the Coast Guard and she is the commanding officer of a ship. She's out there on the high seas and um, so I asked her one day, "If you could have your perfect death and we know we're all doing to die, what would it be?"
And she said to me without you know, hesitation, "Oh, I'd prefer to drown."
Leary: And so as a mother of a woman who spends probably, at least 50% of her life on the ocean. Can you imagine, as a mother, how my grief will be different if she were to drown?
Leary: And so, that's a gift. I asked the question, we had a conversation and she gave me the gift of her values, you see? I know more about her, you know? And as we have conversations at the end, about the end of life? Our values do come out.
Paulson: Let's talk about, lets say, adults who feel like they need to have this conversation with their aging parents.
Leary: Mm-hmm. Mm-hmm.
Paulson: What if their parents don't want to talk about death?
Leary: Actually that comes up a lot in my hospice work. It may not be that they don't want to have it. It may be they don't know how to have it. So, I begin with myself and I'll say, "Mom you know, the other day my 60 year old friend died suddenly and it occurred to me that I had never told my husband how I wanted to be buried or what I cared about. So Ive started having this conversation with my husband and I want you to know that I want to be cremated and I want my ashes to be spread out in the water and I want just a small private memorial service and this is what I hope you remember." So, again I'm just talking about myself and I'm modeling that conversation and by the way we don't have just one conversation, we go back to it, little pieces, little pieces, little pieces. But at the end of this conversation I might say to this mother, "you know, I don't think I really know what you really care about and I want to follow your wishes but I don't want to guess and I wonder if as a gift to me, you would tell me what you care about most."
Paulson: This is really about developing your relationship. In other words...
Paulson: ...it's not just helping her talk about...
Paulson: ...how shes going to deal with, with death later on. I mean, you might change in the process as well.
Leary: Oh, we all win. Oh, we all win. So that at the end of um, when my father did die because we had these conversations. My grief was so different then the grief I felt after my mothers death. My, what I said to myself after my fathers death was, "I gave him what he wanted. Not only did I give him the death that he wanted, I give him the life that he wanted right up to the moment of his death."
And I did not have the regret, I did not have the remorse. Of course I had grief, I missed him. I still miss him but I feel full. I feel grateful, I feel as though the experience was as much for me as it was for him. So everybody wins when we have these conversations.
Paulson: Now there's another kind of conversation as well and that's with people who are dying. I mean who are in their final days...
Paulson: ...and you've talked with thousands, literally thousands of people and you've been at the bed side...
Paulson: ...hundreds of times and the moment of death. I mean you've worked in...
Leary: Mm-hmm. Yes.
Paulson: ...hospice and other places. Um, what are those conversations like?
Leary: Rich. They're very rich. They're not superficial conversations. They really get down to pretty much the five things that um, people need to say at the end of life. Which is, thank you and I love you and at the end of life also, people have conversations with deceased loved ones who they report are in the room with them and one of things I try to do with families is to encourage them to validate that experience and I can hear the dying person sigh, as though, [sigh of relieve] you know, someone believes me and it's not uncommon that um, soon afterward they do let go and die.
Paulson: So these are common? These, these kinds of...
Leary: Very common.
Paulson: ...death like visions.
Leary: Yeah. Pre-death visions are very, very common and my response to um, a person who says, you know, "Johnny's in the room. Johnny's here."
And I might say, "Who's Johnny?"
And the woman says, "Oh, my husband. My husband."
My response is, "Well, of course he's here. Where else would he be?"
Where as, other people might say, " Oh, you know, hush, hush. It's just the medication, you're hallucinating."
Why would we take the comfort away from someone?
Paulson: what would you think for people who are dying, what are their biggest fears? What are their biggest worries do you think?
Leary: Uh, in my experience, most people are ready to let go but they're concerned as to um, whether their loved ones are going to be okay and so as family members, one of things that I coach is to be specific and to let them know, dad this what I'm going to remember of you. You have a legacy, you'll always been in my heart.
Paulson: And I would think that would be so important. I mean, you know the person...
Paulson: ...who's dying wants to know that they're life has meaning.
Leary: They're life had meaning. Yep and they will not be forgotten. Mm-hmm...
Leary: ...and they will not be forgotten. Yes.
Paulson: Lonnie this has been a gift to talk with you. Thank you.
Leary. Thank you.
Strainchamps: That's Lani Leary talking with Steve Paulson. She's a psychotherapist and the author of "No One Has To Die Alone".