grief

‘Nature Has Its Way of Ending Life. I’m Changing the Manner and the Time.’

As her grandpa-in-law prepared for the end, Rachel called to say good-bye.

Photo-Illustration: The Cut; Photos: Aleen Bayard
Photo-Illustration: The Cut; Photos: Aleen Bayard
Photo-Illustration: The Cut; Photos: Aleen Bayard

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A few weeks ago, my partner Adam’s grandpa David called to let us know he was proceeding with his plan to have a peaceful, dignified death. David had been diagnosed with Parkinson’s ten years earlier, and in the last two years, as his mobility and quality of life had slowly declined, he’d been openly considering what is commonly referred to as voluntary assisted death (VAD). When he was initially diagnosed, he’d gone so far as to reach out to a facility in Switzerland, one of the only places where the practice is legal (it’s legal elsewhere, but often with many contingencies, including the necessity of a terminal illness). So we — Adam and I, David’s three kids, and his extended family and friends — knew he would likely go through with it down the line, but not now, not when he was only 85 years old, in moderately good health, and still able to live a relatively independent life (he’d just moved to a senior-care facility and was certainly having some health problems, but he had his own apartment and general freedom to move about the city of Chicago as much as he was able). In other words, we were prepared for the ultimate act, but we were surprised by the timing.

At the time, Adam and I were both recovering from COVID-19. He was a few days ahead of me and already testing negative, so he booked an early flight the next day and headed to Chicago to say good-bye to his beloved grandpa, who had been a father figure to him ever since he’d suddenly lost his dad at age 15. Frustratingly, I wasn’t quite healthy enough yet to travel, so I called David up on a Wednesday morning — five days before his planned Swiss exit — to have my own final conversation with him. David and I have not always been close. In fact, for many years, our relationship was contentious and difficult. I found him intense and overly aggressive; he found me withholding and stubborn. But over the 17 years that I’ve been with Adam, David and I eventually came to a sort of mutual love and understanding, and learned to not just tolerate but even enjoy each other.

On that Wednesday morning, we spoke for about 20 minutes, and I peppered him with questions about the logistics and decisions behind his planned death. I recorded the conversation, because I knew that Adam would someday want to hear it — he’d told me earlier he was worried that without me (obsessive, exhaustingly curious) by his side in Chicago, he (calm, normal) would forget to ask all of the questions he wanted to ask of David. At one point on the phone, I asked David if he knew that Jean-Luc Godard had just made the very same decision to purposefully end his life in Switzerland. David seemed a little annoyed by the intrusion of popular culture into our philosophical conversation and ended it a little abruptly. “Bless you,” he said. “Good-bye!”

Later that night, around 10 p.m., I got another call from David. He apologized for cutting off our chat at the knees and asked if I wanted to talk more. Of course I did. He paused for a minute. “Earlier,” he said, “when you were asking me all of those questions, was that because you were just curious personally, or because you wanted to interview me? Because I would be fine with that.” I laughed. I hadn’t expressed that desire out loud, but of course I wanted to interview him. I found his decision to die on his own terms fascinating, brave, terrifying, devastating, infuriating, and awe-inspiring. Selfishly, I wanted to understand everything about that choice. I’ve always processed things by burrowing deep into them, dissatisfied until I hit the bottom, as dark and weird as it might be down there. As a partner, I wanted to help Adam, a more careful, thoughtful, and methodical processor, with answers at the ready to questions that he might not pose for years. And as a journalist, I wanted to better understand assisted dying — to try to normalize or at least conceptualize something that most people have no experience with, no idea what to say when presented with, no real cultural road map for how to grieve before and after. So David and I spent the next hour talking and laughing and crying about death, the act of dying, fear, rabbis, how we treat the elderly, Adam, the afterlife, and what David was going to eat.

You’ve been considering VAD for two years. Why now?

Oh, I’ll tell you the reason — I can’t see anymore. My eyes. They’re out of focus. I’m seeing double. You know, it took me three or four times to dial you, because I can’t control my hands anymore. I can’t control my fingers. I can’t write my name. I can’t control a pen. The only way I can communicate now is basically by dictation. And then I can’t correct the errors. I know what people say about Lou Gehrig’s disease, that you’re locked in your own body. That’s how I feel. I’m dizzy all the time. If I don’t have a walker, I’ll fall. I can do 20 push-ups right now — this is fascinating — but when I’m down on the ground, I can’t get up by myself. I have to hold the walls, the table, the chairs. Parts of my body work. The parts that are muscular. But nothing that needs any help from the brain.

What I see in front of me is scary, and I can’t control it. I don’t want to become a burden. I’ve watched others go through this; they don’t have a choice. I’m not reactive; I’m proactive. I think about the choices I have. I don’t let them happen to me. I don’t let Mother Nature control me totally. I don’t let anyone control me. I decide myself what I want to do and I do it.

Is your decision mostly about being a burden?

No, it’s about me. I can’t live like that.

You first started thinking about assisted dying a few years ago, right?

I started the process two years ago. I didn’t know whether or not I’d need it. That’s why we buy insurance; you may never need it, but if you do, you’ve got it. But it changed when my eyes no longer worked and I couldn’t control my fingers. That’s when I said, “I have to go.” It’s only in the last three months it’s gotten unbearable. I went to see the doctor to be able to sleep and he had to help me from my walker to a chair. Parkinson’s is a destruction of the pathways that the nerve impulses travel. Yours are a clear highway. Mine are broken up. The impulse doesn’t get to where it’s going without being damaged. That part of my brain doesn’t work anymore.

Are you scared to go through with it?

I’m not the least bit scared. I’m scared if I don’t do it — that’s my fear. That’s why I am calling the people I know to say good-bye. I want them not to be scared for me. I’m not happy I’m doing it. It’s contrary to my belief about life, which is so precious, so unique, so wonderful. I don’t want to do this. I don’t want to leave this wonderful world, leave you and Adam, and what life’s about. But I don’t want to end up like people I’ve watched die. It is brutal. That’s where I’m going. And I have a choice not to do it. I have a choice to be remembered as being alive, and not looked at with pity.

Climbing the hill of life is challenging but marvelous. The way down is slippery. Literally. It’s easier to walk up than down. Even though gravity helps you. I have these conversations so people like you can process it and not feel sorry.

Do you think there’s a chance you’ll get to the moment of death and change your mind?

There’s always a possibility. I live in a world of possibilities, not conclusions. It could happen, but it won’t happen. I recently went through a time period where I was out of control. I was yelling. I became the disease. The last couple of weeks, my son said to me, “You seem so comfortable in doing what you’re doing.” I’m comfortable. For me it’s the right thing. I can’t speak for anybody else.

Did you see that Jean-Luc Godard just did the same thing?

I haven’t read a newspaper in weeks. I don’t know who you’re talking about. I’m going to a place of beauty. [Ed. note: For personal reasons, David’s family requested that we not name the facility.] They help people transition from life to death. I’ve been nothing but impressed with who they’ve turned out to be.

How did you find the place you’re going?

One of my daughter’s first boyfriends in high school. I became a mentor for him and didn’t know it. Years later he told me how important I was in his life. When I told him what I was seeking, he found a magazine article about this organization.

And you reached out back then?

My first email is from August of two years ago. That’s my first recorded correspondence. I’ve never talked to them. They won’t talk to me. They only communicate by email.

For legal reasons?

I think for ethical reasons. They don’t want to help you do anything. They don’t want to encourage or discourage. They want to respect what you’re going to do. Make sure you understand what you’re doing. I couldn’t understand why I had to give them so much information — on my family, my children, my parents, my siblings. I think it’s because they want to make sure the person involved isn’t planning a crime, or a false claim of death for insurance purposes. I think, I don’t know. They want notarized copies of birth and death certificates. They want to make sure the person they’re dealing with is who he or she represents themselves to be.

So there’s a lot of hoops to jump through?

Just information. Send me your birth certificate, your father’s birth certificate. Just to legitimize the applicant.

So do you have to prove you’re sane when you arrive? How?

Yes. There’s a psychiatrist I have to meet with. That’s the only condition I have to achieve when I’m there.

And what will prove to the psychiatrist that you’re of sound mind?

His judgment of my answers to his questions.

Can they turn you away if they think you’re not sane?

Of course they can.

And they have to open specially for you, right?

Ordinarily, you have to wait about eight weeks. They’re doing it in one week, which was my request. They’re coming in on a Sunday. They’re doing this because of their compassion. That’s what I believe.

How exactly will they help you die?

Intravenously. They don’t do it. I do it. It’s one of only three places on earth where assisted end of life is permitted. There’s only one condition: that I understand what I’m doing. They say, “Here’s what you have to do.” They don’t tell you how to do it. But it’s a very thorough investigation.

Can you tell me about the logistics? You get there, and then what?

They set up an intravenous system in my veins. They have the poison — I use the word “poison” [Ed. note: It is sodium pentobarbital.] — in a syringe. I have to push the button down myself, force it out of the bottle into my body. I fall asleep and from there I go … wherever I go. My life is over. My life on earth as we know it is over.

How long does it take?

To fall asleep, very fast. Then about ten minutes. But I’m asleep at that time.

Will you be alone?

My children will be with me. Holding my hand. They want to hold my hand as I drift off. They want to be there as I am no longer alive. That’s their desire.

Did you want them there, or did you want to be alone?

My preference for myself is alone. If they wanted to be there, I said, “Of course.”

I think it’s a brave way to die. It’s a really difficult choice.

I say the opposite. It’s the easy way out. In a way, I don’t want to let Mother Nature dictate me. I’m challenging Mother Nature. How presumptuous of me. Who am I not to allow her to do her thing? But when I see friends, what they’ve gone through in their dying days … I’m just preventing that. The burden on individuals and on society. Consuming medical attention that the young people are entitled to. I’ve thought this through for two years. I’m very comfortable with what I’m doing.

What would you do if this wasn’t available to you as an option?

You can put a “do not resuscitate” in your will. That I’ve done for a long time. If I didn’t have this insurance policy, I would starve myself. Eight days without food and water. I wouldn’t use a knife, or jump off a building, or in front of a car. That’s a violent death. I want a pleasant death. I want a natural death.

Where are you now, and where will you be until you go to Switzerland?

I’m living in a 300-unit assisted-living facility.

My grandma is in a similar facility, and she has dementia. I’ve since thought a lot about the way we treat the elderly in our society and in our country. I’m curious if the circumstances were different around the way we treated the elderly, if you’d feel —

They don’t command respect, the elderly. I can’t explain to you the pain, the frustration, the gestalt of what I live with. That I can do push-ups but I can’t write my name; I can’t see. All of these things happened recently. When I go to my computer or my iPhone, and I want to touch your name, I hit someone else’s name. If I can’t control how I speak, when I speak, who am I? I am a prisoner in my own body.

I guess my question is, if there were other options for you as an elderly person, is it possible that you wouldn’t be doing this?

No. I’m just one of a subsection of people. When I first had Parkinson’s, it didn’t bother me. In the last month, the vector of decline has been so fast and so critical. What am I left with? Frustration. Fear of what happens next. There’s a much higher probability that I am going to die from falling and then get pneumonia. Because Parkinson’s takes away your balance. So I’m thinking about risk. Do I allow Mother Nature to do her thing her way, or do I help her do it my way?

Do you feel like your only options now are: live in this home and decline, or go to Switzerland? What if there were another option available to you, like living with your family, or —

It’s not about living. It’s about the disease preventing me from the ordinary things that people do, that they have some control over. It’s about quality of life.

That makes a lot of sense to me.

Nobody gets it. Because I’m so healthy, I come out on top in all the tests that they give me. But they forget I started at a higher level.

Are the doctors trying to convince you not to do this?

Every doctor I’ve ever been to, I tell them right away. But I’m not asking for their permission. The only one who tried to talk me out of it was a psychiatrist today. See, I’m still trying! Today I talked to a psychiatrist. I’m ready to go bye-bye on Sunday morning and I’m still trying to figure it out. Still trying to figure out, Is there a way I can not do this, and still have some quality of life? Without risking being a vegetable, becoming a burden on people? But I’m risk averse.

What did the psychiatrist say?

“Don’t do it, Davey. We’ll cut down your pain.” I say, “Doc, you cut down my pain, then you take my mind away.” The only way to dull the pain is to decrease the awareness of the body.

Did you convince him you were right?

No. I didn’t try to convince him. I’m not seeking approval. I just tell them. I respect who they are; if they ask me a question, I’ll answer it. Chicago has some of the best hospitals in the world. But they have no way of stopping the disease of an 85-year-old man. It’s nature. The way we live and die; the way trees live and die; the way an animal lives and dies. It’s not a choice. Who the hell wants to die? I don’t. I’ve had so much fun in my life! The places I’ve gone to, the things I’ve done. I love it. But I can’t enjoy it.

I understand.

The doctors say, “Stay alive at any cost!” When [my wife] Dotti was ill with pancreatic cancer, we stopped taking infusions of poison. We both agreed that it just made her life more miserable. She was going to die soon. Let her die in peace in her bed without pain, not in some fucking hospital someplace. The sun was setting over the Pacific in Newport Beach. My daughter says, “Dad, get some Champagne for Mom.” I got a Q-Tip and I grazed her lips. Seven hours later, she took her last breath.

Has anyone in your family tried to talk you out of it, or what’s been their reaction?

No. Just the opposite. My children have never told me their opinion. They said, “If you want to do it, you’ve thought about it, we support you, Dad.” All three. And I’ll tell you what the result of this is: I’ve experienced and felt their love like never before.

Did that surprise you, that immediate acceptance?

Not really. Because I represent who I am with transparency, fidelity, openness, respect. I try to respect everyone. When I don’t, I try to apologize. My daughter and granddaughter and I went to a last supper last night. We laughed about it. We brought some humor and reality to the elephant in the room. We cried together. It was a marvelous experience.

So you were open with your grandchild about what was happening?

Yes. I didn’t go into exactly how it happens. But she knows it’s not running away. It’s acknowledging that trees die, and people die. And the process is painful, but you have some choices about how it’s done. It’s inevitable that everything dies. It’s just when and how.

The way that our culture deals with death is really a mess. It’s something to be exclusively terrified of, not to be talked about …

Oh, yes. And that’s why I took the elephant out of the room. We had the best dinner at a steakhouse, very expensive, a big piece of chocolate cake. We laughed about it today. She goes, “Bye-bye!” I tried to bring reality to death; it’s nothing to be fearful of.

I think there are two reasons that our culture is so uncomfortable with the idea of voluntary assisted death — I think part of it is the Christian theocracy that’s baked into American culture, this idea that we can’t offend or play God. And then there’s the idea of not messing with “nature.”

I am messing with it. I am being very presumptuous.

I don’t know if I agree.

Nature has its own way of ending life. I’m changing the manner and the time. That’s presumptuous.

Is any part of you scared of what it will be like, the act of dying itself?

Not at all. In a way, I’ll look forward to it. I’ll be out of my … not “misery.” But when it gets dark out, I’m fearful I won’t be able to sleep.

What keeps you awake at night?

Do you know what nervous-leg syndrome is? My whole body does that. I can’t find comfort. There’s nothing I’m anxious about. I’m not scared of anything. My family is in decent shape. My finances are clear. I have no real anxiety, but my body is not working. So my whole body feels like nervous-leg syndrome. I can’t find a position that’s comfortable. Sometimes I go to sleep on the couch; sometimes it works and sometimes it doesn’t. Right now I have anxiety about falling asleep and if I don’t, I toss and turn, then take a shower at two in the morning. That does it.

Underneath it all, I think, there is anxiety. There are questions. I’m really by myself. There’s nobody with me who understands what I am going through. So I’m lonely. That makes me scared. I think that’s what it is, Rachel.

What do you think happens after we die? What’s your best guess?

Until recently, I hadn’t thought about it. I’m a “here and now” person. Yesterday was the first time I really thought about it. My belief is nothing happens. I’m gone, and that’s the end of it. What remains is the memory of those who remain. Tradition, culture, is the result of the memory of those who have passed or died. That’s who I then become. I become an idea; I become a memory. We talk about Dotti, the way she baked a cake. And that creates the fabric of society. Survivors get together and talk about their forefathers. It creates a rubric for those who remain. That’s what happens.

Do you have any regrets?

The one regret that I do have, Rachel, is I find that philosophically I’ve expanded dramatically. My capacity of feeling and thought. That’s the only regret I have at this point in my life. That I can’t let the  people I’m leaving behind understand what they meant to me. And how wonderful my life is. How grateful I am to be alive. How much I love life.

You’ve been a really good person in my life. I know we had our issues in the beginning. We worked them out over time. I’m really sad I won’t be able to say bye to you in person.  And give you a hug.

We’ll do it right now. Picture in your mind’s eye. I am in my office in a little chair. Talking to a woman who I love. I’ll give her a hug right now.

How do you think Adam will remember you and talk about you?

I think he’ll talk about me first with the experience he had when we went fishing in Mexico: “My grandpa taught me that I could do it. If I catch it myself, then the fish is mine. He taught me how to drive by myself on a little road in Mexico. He gave me the opportunity to be who I was.” That’s what I think he’ll say about me.

He loves you so much. 

I know that. He’ll say, “I miss my grandfather. I could count on him, rain or shine.” That’s who I tried to be. Because I didn’t have anyone behind me, ever. Until I met Dotti. She filled up some of those holes. And my children, as they grew. And this conversation I am having with you is very powerful for me. I hear your tears, and they’re really tears of happiness.

Well, I’m sad for Adam, because I know this is a huge loss for him.

It’s only a loss because of what it was when I was alive. When the next-door neighbor’s uncle’s brother’s mailman dies, we don’t give a shit. But when someone important to us dies, that’s when we’re sad. And it turns into joy. Underneath that is the times we had together, what we learned from each other, the fun we had. Catching a fish. Teaching him to ride a bicycle, chasing him, falling down. Playing soccer in the backyard. That’s what he’ll remember. That’s what it’s all about.

Symbolically and actually, you were a father figure for him for a long time. It will be tough for him to lose you because of that.

Of course it will be. But he had me. And that’s what he’ll remember, the joys we had together. Who I was and will still be in his life. My grandfather is still a prominent figure in my life. I talk to my cousins and we always talk about my grandfather. He was a role model. He lives within us and is part of us. I’m not going anyplace. I just won’t talk back. What I represent is always there. I’ll always be there, what I represent, and I’ll always be with him. I don’t know where I’m going. If I could tell you, I’ll tell you when I get there.

Yeah, will you tell us?

I would tell you if I could. But nobody’s told any of us, so I suspect I’ll be treated the same. If there is such a place.

Is there anything in the past week, since you’ve made this decision, that you’ve changed your mind about or had a revelation about?

The frailty of man. I see how it’s playing out with certain people, whose beliefs and conduct are contrary to each other, who have tried to talk me out of doing this. It’s very hurtful and confusing. I need to speak to a rabbi so I can forgive them.

What else do you want to ask a rabbi about?

I want to ask what the Jewish belief is about suicide. Is it so much against the religion that there’s no place for someone like myself, who loves life, who has lived a good life, but now the pain of existing is for me unbearable, and is there a way that I can leave this earth with the blessing of the rabbis because I’m a Jew? I want to honor my heritage, what a Jew is. It’s about seeking their permission and consent. I’m wearing a yarmulke now. Which I did periodically over the years. It’s a need to connect. I want to be proud of being a Jew, to continue in my own way honoring our forefathers, those who died in the camps, those who have been taken advantage of.

What if the rabbi doesn’t give you permission? Will that change your mind?

Not at all. I’d rather go with a blessing. But I’m going anyway. When my son was in the Gulf War, one of the things about a Jew is that you don’t lie about being Jewish. He went to our rabbi and he said, “Rabbi, if I’m in the war and I’m captured and asked if I’m Jewish by a soldier, may I lie and say no?” The rabbi said, “The religion permits you to lie to save your life.” So he went off to war. Fortunately, he was not exposed to that particular risk. But he wanted the blessing to lie. He wanted to honor the tradition. I want to honor it to feel better. I’d like things clean when I leave.

What’s the last thing you’re going to think about?

I think the last thing will be tears. Tears of just being fortunate enough to have lived the life I’ve lived. Tears that I’ve brought sadness to certain people. And not being able to convert that to joy.  Sadness that I’ve done some things and been part of some things — even with you, it took us years to get to where we are now. I have sadness over those lost years. But that’s what life is. We couldn’t find the language. What’s most important is that we’ve come together now. When I’m gone, you don’t have to worry about what we could have done. We did it. That’s the most important. Those tears will turn to joy.

When are you leaving for Switzerland?

I leave at three o’clock on Saturday. And I get there about seven in the morning. I don’t know how long it takes, but probably by 2 p.m., I’ll be a memory.

So what will you do with your last few days?

People are coming to town. I’m calling people like yourself who are important. My brother is coming to town.

What’s your last meal going to be?

Probably something very simple. I’m starting to cut down on the heavy stuff so I don’t have a problem with the long ride. I can’t walk around an airplane too much. So as of today I’m starting to cut meat and heavy foods so the trip will not be difficult from a digestive perspective. I’ve stopped taking pills except for Parkinson’s and for sleep.

Are you angry about what’s happened to you?

Not at all. Angry? I’m grateful. Angry at who, what? Eighty-five years of my life — whew! I had the greatest life there was.  I touched people and made a difference. And I learned from each of them. Anger? No! I just want more time to have more fun.

I hope you know how much you mean to us both.

That’s why I can go. Because I’m clean with you. That’s my responsibility before I leave this earth, a little better than I found it, with no unresolved issues with anyone. Anyone with any issues, I welcome them to get it out now. My ego is gone. That’s it. There’s no right or wrong.

The wise man is he who knows there are no answers, only questions. That’s what life’s about. You can’t understand life. How can you?

On September 20 at 10:38 a.m., in a small Swiss town, David died in the arms of two of his children.

This conversation has been edited for clarity.

‘I Don’t Want to Let Mother Nature Dictate Me’