Joan’s Daughter on Living With Her Mother’s Decision

November 13, 2012

FRONTLINE’s cameras stopped filming Joan Foley Butterstein in May, just three days before the terminally ill grandmother “hastened” her death with the support of her husband Art and daughter Kathleen.

Almost six months after Joan’s death, FRONTLINE spoke with Kathleen Coulter, who had been at her mother’s side throughout the journey, about what it was like to watch her mother die, how she and Art are both grieving and her outlook on the decision Joan made.

You said you knew your mom wouldn’t go until she was ready. But when that day came, did you feel ready?

I felt as prepared as I think I could be. I was strictly in a supportive role. I didn’t take the medication. I didn’t prepare the medication. I didn’t do anything. She had to do it all, otherwise I would be legally liable. But emotionally, yeah, I was ready.

I saw my father suffer with cancer for two years with chemo and radiation and all of that stuff, and it was horrible. So the fact that she chose this way to go was so much easier for me to deal with. In retrospect, I’m glad she did it the way she did because I didn’t have to watch her suffer. She didn’t have to suffer more than she was already suffering.

She was starting to feel pain daily. It was so hard for her to move around and get around. She’d have one illness after another, and all kinds of different things would just hit her. And Art, my stepfather, would call and say, “Why don’t you come down today? I could really use your help.” And it was getting to the point where she really didn’t want to suffer anymore, so I’m glad that she had the option to do it the way she did it.

How did it happen? Can you explain the process of her “hastening” that day?

I had all these images beforehand of tearful goodbyes and things like that before she took the medication, and it didn’t work out that way at all.

If  you ever knew my mother you would know that she was very determined, and she was very prepared. We had rehearsed what we had to do many times, and when she woke up that morning, she was ready because it was time. So it wasn’t a lot of tearful goodbyes. It was, “OK, I can’t eat too much. First I have to take this medication, the anti-nausea medication. Then I have to take the anti-anxiety medication. And then I have to wait.” … So it was very regimented; it was very organized; it was very well rehearsed.

And when we finally got her into bed and she had finished taking the lethal dose of the medication, she fell asleep very quickly. But she was still aware of what was going on around her, so basically I kissed her and I said, “Go with God,” and “Kiss Daddy for me.” And then I just watched her sleep for four hours. That was the hardest part, waiting for her body functions to cease, which we knew was happening. We knew she wasn’t in pain. She was absolutely sound asleep, almost comatose, so there was no discomfort for her. It was mainly discomfort for us, Art and I, watching it. But I know that she went peacefully.

When she finally did go, we took our time before we called hospice to let them know that she had passed. And when the mortuary came to take her body away, I left. I went for a walk. Art went into a different room. Neither of us wanted to see her body taken out of the house, but it was peaceful for her.

One of the things that amazed me the most was that we had a representative from Compassion & Choices [the right-to-die organization that counseled Joan through the process] on the phone. I was on the phone with this representative, who had been through the whole journey, the whole decision-making process and everything else with my mother. She was on the phone while she was taking the medication. She stayed on the phone with me for three hours. She cleared her whole schedule for the entire day. She was just so supportive, so informative to me, as far as this is what’s happening with your mom now, stuff like that, because mom obviously couldn’t tell me. During the periods when I had nothing to say, or she had nothing to say, she would say, “Tell me one of your favorite stories about your mother.” And she was just so there with me in the moment for three hours on the phone. It was just incredible and I can’t say enough about that.

What was it like afterward? What has the grieving process been like?

Obviously any kind of grieving is a process, but for me, I think it’s been prolonged because I felt like I needed to be more supportive of Art, going through this. I know it was difficult for both of us, but more difficult for him. At 92 years old, losing the second love of his life was very difficult for him. …

Art’s having a hard time. He goes to the cemetery every day. He misses her so much, and I think he feels like I’m neglecting my duties as a daughter because I don’t go to the cemetery every day. But the fact is that with my beliefs, I know that mom is right on my shoulder, she’s here with me. … She’s just gone to a different place, so I’m OK with it. I really am. And I’m OK with the fact that she’s not in pain anymore, and she’s not suffering anymore, and she didn’t have to suffer the way my father suffered. I have my cheerful moments, and I cry and I miss her, but I’m OK. It was time for her to go. God wanted her.

And then the other thing [that has prolonged the grieving process] was that she was cremated, and half of her ashes were buried with my father, but the other half she wanted scattered in the mountains. We didn’t rush that. That didn’t happen until the first weekend in August when my children came out from Illinois so they could be there.

So it’s been a long process for me, and then with this show airing, it’s still not over.

How is Art grieving?

… He lost his first wife of almost 60 years, and he took care of her for I think nine years with Alzheimer’s. Then and he met my mom a couple of years after [his first wife] passed away, so he [and my mom] only had like six years together, and I think he feels really cheated. He’s 92 years old. He’s lonely. He’s grasping at love in a lot of different ways, and I feel for him. He just misses her so much. And he missed the company of her so much. They had such a good fun, marriage for six years. They laughed. They had a few fights, they had issues, but through it all they could laugh and they loved to be together and they loved each other so much. And he’s devastated. …

I know this was a real struggle for him because of his [Catholic] religion and his beliefs. But because he loved her so much, he said OK, I’ll do this your way. And I think he’s feeling really guilty about it.

In the film, you say that Joan had not told many people, that this was a process you didn’t feel comfortable telling people about while it was happening. Presumably after her death, and certainly after the film airs, people will find out.

I think there’s going to be some definite repercussions. I actually sent out an e-mail last week to family and friends. There are still very many people who do not know. A lot of family who didn’t know, who were told that mom passed away, but they didn’t know how. And they won’t know until they see the film air. I didn’t tell them, and they’re just going to watch it, and they’re going to see it.

I’m sure there’s going to be repercussions. Some people are going to call me and say, “Oh I’m so glad your mom did it that way,” and “How are you?” And other people are either not going to talk to me again, but the fact is it wasn’t my choice. It wasn’t my decision. I was in a totally supportive role. It was what she wanted. … It was something that my mother chose not to tell very many people and we just left it at that. And this film is her legacy and that’s the way she wanted it. …

I can’t control other people’s feelings and other people’s opinions, and I don’t intend to. If they’re happy about it and pleased about it, and they want to remain in touch with me, that’s wonderful. And if they’re not, and they just want to complain about it to me, I’m just going to back off from those people. I can’t handle that. …

Looking back at this process, would you do this for yourself if you were terminally ill?

Yes, and I think I would do it the same way. Very few people would know about it, and it would be my choice, my decision, my way. But I wouldn’t broadcast it. I wouldn’t want to put Compassion & Choices in that situation, legally. …

It was peaceful for her, it was unnerving, a little bit, but we had so long to prepare for it. She had been planning this for a long time. … Being her only child, I had to take it. I wasn’t going to disown my mother because she wanted to die this way. I give her kudos for having the gumption, the courage to do it.

Was anything about the experience different than you had expected?

Not really. As I said, process is still ongoing. Right now, it’s a lot of anticipation on my part about how this show is going to turn out.

Why did your mom want her story documented? What did she want people to take away?

That was the biggest focus of the end of her life. When FRONTLINE contacted her, it was like, “Not only am I going to do it my way, but I’m going to go out on top!” So it wasn’t a joke, it was very serious, but it gave us something else to focus on other than just, I’m going to lose her, and it’s going to be so sad, and so horrible. It gave all three of us something else to focus on. And we did. And her determination was just incredible and it kept us going. …

My mother was in show business years ago. She was a showgirl in a nightclub in New York City in the 1950s, and then she settled down and raised her family, so this was like, “I always wanted to be a star, now I can!” What a way to go. I told my best friend, and she was like, “Oh that is so Joan.” …

The legacy that my mother wanted to leave was that this is OK, and this is what I wanted, and the option was there for me and I’m grateful. I hope other people will see that and not fear death as much as they do. My mother made peace a long time ago with whatever she had to make peace with and she was not afraid to die, she was just afraid to die in pain. And having this option was a Godsend for her and for me, because I didn’t have to watch her suffer. So blessings to Compassion & Choices. … I hope that they can progress in a good way and keep this going for the people who want this option. …

She took her final journey, and I took the journey with her to a certain extent. Now I’m continuing my own journey, but it’s part of the process and sometimes it hurts. Sometimes I smile. I think about the good times. I look at the mountains where I know we scattered her ashes every day. I talk to her when I’m on my way to work in the mornings. I say: “Good morning Mom. It’s a beautiful day. Thank you.” I just feel at peace with it and I hope that other people who are in her condition or who may become in her condition will remember this and may consider it and do what they need to do in their own way, and I know this was the best way for her.

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