People who spend the time until their death in hospice: They see what matters with different eyes. Five protocols.
"I don’t think about what comes after death," says Luzi Brand Photo: Lia Darjes
Not having to be better
I’ve worked everything. In factories. Everything. I was at Siemens a lot. Piecework, right? It started with a sore throat, I had such a thick neck. Then I went to the clinic and they diagnosed cancer: Cancer had already spread, so it was too late. I don’t know what kind of cancer, from head to toe. That was only a year and a half ago. I could no longer live on my own, I collapsed a few times, almost dead. Oh, I don’t know, I was so resigned to it. I just thought: And now? What are you going to do now? What can happen? Yes, nothing. Except that you close your eyes, have a lot of pain, nothing can happen. Or I go there, where they help me, where I have no pain and I can fall asleep peacefully. I didn’t want to go to a home. You just bum around there. Here it’s still dignified, everything is clean, it’s like my little apartment, I think. I’ve been here for a quarter of a year now.
I don’t think about what comes after death. I imagine it like this: I fall asleep. I just fall asleep. That’s it. That’s all there can be. I thought about my life. I thought it was all right. With all the ups and downs, I’ve been married 53 years. And so, I think, I can go away peacefully. The most important thing is health. And contentment.
You are satisfied when you don’t want to have everything. I don’t have to have two, three cars, I don’t have to have a house, you know? I have to have: a healthy family, be healthy myself – that’s all I need. That’s all I’ve ever needed. We were always very modest. Others always wanted everything. Big vacations, everything. We were content.
I was never sick in my life, never. I have two children, they also live here in Berlin. But I don’t want them to see the end coming. I don’t want my children to see that the end will come at some point. They will see that. The children don’t come. I call, that’s enough. Once they were there, they checked if everything was okay. And that’s enough. My husband has been in a dementia community for many, many years. He lives in his own world, he doesn’t know anything. I told my children not to come, so they wouldn’t see mother die. I saw my mother die.
I just want to go from this world in peace and quiet. I deserve that. No, I had a nice life otherwise. Small vacations, small parties. Italy, Spain, short trips. Nothing big happened there like with many others. Nothing big happened with me. Just little things. And yet I was content and I am content now, calm and content. When I was diagnosed, I was numb. I did not cry. I still haven’t cried to this day. I don’t know why.
Take time when you have children. Take time for parents. Young people today live so larifari, just like that. No, you have to make time. Have an extra hour of coffee with your mother, that kind of thing. Just like gifts – what good is the most expensive gift for your mother, who already has everything, if I don’t have time to go out for coffee with her? Being successful is not so important; being recognized is important. I don’t have to be better than others. I just want to belong, to be accepted. That people accept that I am the way I am.
Luzi Brand is 72, she comes from the Rhineland, but has spent most of her life in Berlin. The conversation with her only lasts about twenty minutes, then she is exhausted. Knowing what you want
My first husband wouldn’t let me work, I don’t know what his problem was. For twenty years I was a mother and housewife, I cared for my second partner until he died. From 2012 I worked in a social goods store. They get donations and sell them. My department was china and decorations. I made sure the dishes were clean and intact. People donate different plates and cups and stuff, yet you want it to look like something on the shelf. That was a nice feeling, to be needed. And then you get a mess like this.
"Now I’m just waiting to die," says Manuela Fahl Photo: Lia Darjes
I was in the department store for four years. Shortly after I started, the illness started. I had to take breaks – sometimes weeks, sometimes months. It hurt me a lot when I had to leave again. When it got worse, I only wanted to come for two hours. Three times we tried. Then my boss said: get well first. I have been on sick leave since December 2016. All this time they kept my job free, only a few weeks ago I signed the termination notice. The employment contract was my proof that I was alive.
The doctors know what I have, but they don’t know why. If I understood why I have such brutal pain in my stomach, then maybe it would be easier.
Now I’m just waiting to die, and I’m so sick of waiting. I have been in hospice since August 2017, before that I was almost only in hospital for a year. At two o’clock, quiet returns here, only a few are still walking the corridors, most are in their rooms. For me, it feels as if someone has closed the door and thrown away the key. Germany should introduce euthanasia, just like Switzerland. I can’t go on, I don’t want to go on, and I have to wait here to be picked up. That is cruel.
With the loneliness and being alone, it’s strange. My current boyfriend comes most days and when I’m not feeling well, I fall asleep. But if he is gone, I feel alone. It can’t be any different in jail. I would like to have a button. Press it once and there are people around me. Press it again, and I’m alone. Of course it’s nice to know: Someone cares about you. But the attention of other people can be very exhausting.
If I had one wish, I would just want my old life back. With all the crap and all the beauty. Whether I would do anything differently, I don’t know. I asked myself for a long time what I had done to be punished like this. And I’m not even a believer.
Many people shake their heads because I became a mother so young. I was with my first husband since I was 14. A month before my 17th birthday I had my daughter. Later, two more sons. Thank God the three of them are grown up today. My heart swells when I see them.
When I was a child, I missed life as a family. My mother didn’t want me, so I grew up with my grandma. I wanted to be with my mother so much, I even went to a home that was close to her apartment. Then when I saw my daughter, I had this holy feeling: this is mine.
My grandma said at that time: Nix here, baby, I’ll take care of it, you do your education. So I went back to the home, to the mother-child home. The important thing in life is to know what you want and to get it. By hook or by crook.
I had no contact with my husband for years. My daughter called him because she was overwhelmed. There was a 30 percent chance I would survive my first surgery. He came right away. He says, by the way, if he had known better at the time, he would have done a lot of things differently. Then he would have let me work.
It’s good that my daughter called her father. When you’re as sick as I am, and you’re sitting in this glass ball and everyone else is in front of it, it’s a shitty feeling, but I know if I leave, they’ll stick together.
Manuela Fahl, 47, suffers from angina abdominalis. Her veins are closing up, and her intestines are dying. A pump constantly feeds her painkillers. At the first meeting, she speaks quietly and haltingly, as she says she does in her low phases. At the second meeting, she is more lively. Friends are important
When the doctors told me the diagnosis, I thought: All right, all right. I didn’t see it as tragic. It’s just that my children are suffering, and that bothers me. My three daughters make it a little difficult for me because they’re so, so … they take care of me excessively. If they came once, twice a week, it would be quite nice. They could also take turns. But if possible, both daughters, who live here in Berlin, would like to come every day. If I then say something, they are offended and claim: You don’t want to see us. But that’s not true.
"I think death is a final stroke," says Gabriele Muller Photo: Lia Darjes
I don’t think about what it will be like when I’m no longer here. Sometimes I think: Too bad it’s taking so long. Who knows how much longer. I was operated on December 21, 2016, and on the 24th the doctors said to my children: take your mother with you, have a nice Christmas. So we didn’t expect it to go for another year at all. The summer was still nice, I traveled a lot: To the Baltic Sea, to my daughter in Hamburg and here in the surrounding area. I would have liked to go to Dresden again, I’ve been there more often. Well, and to the North Sea.
I think death is a final stroke. There’s nothing to come. I don’t think much about the past. I’m content with the way things were. You can’t change it anyway. My husband died in 1980, but we were already separated. He realized at some point that he was still too young for children and would rather leave. I raised the three daughters alone. I would not have given up children for a man. I had my job, my children, they had an education.
What is important in life? That you are at peace with yourself and satisfied. Work is important. I couldn’t have stood being unemployed. A good job is one that you can make a living from and that is fun. I think people make far too many compromises in this regard for fear of losing their jobs.
Success is nice, but forgetting everything around you – I don’t think that’s worth it. Money is so important to get by. Here in the hospice, I realize how little you need to live. Table, bed, chair. To know a little bit about the world, also either newspaper, radio or television. Friends are important, everything else is not so great.
Young people definitely spend too much time on the Internet. When my daughters come, they first put the thing on the table. And then it jingles and they look. There’s always something there.
Actually, I want to prepare for D-day, there are still a few things to sort out. My granddaughter gave me a book, it’s called "Grandma, tell me about it." That’s terrible, isn’t it? There are questions in there about what you did. I’ve already put my name in, great. I was going to finish that, but I actually don’t like that I’m supposed to fill that out. I’m not going to answer all the questions.
We talked about burial years ago, and I just said: I want to be buried under a beech tree, it rustles so beautifully. And the beech tree exists now. Actually, it wasn’t that important to me, but my children took it seriously. That is often the case. Sometimes I say: You make a thunderclap out of a fart. They always want to know everything in detail and ask questions. Even about things that you don’t really want to answer. And if one knows more than the other, that’s also really bad. Oh, well. Sometimes I forget who I told what to.
Not knowing when it’s time doesn’t make me nervous. The way the doctor explained it to me, when the pain is so great, you get appropriate painkillers, and then you sleep and sleep away like that. That’s what I hope happens.
Gabriele Muller, 75, comes from near Hamburg, but has lived in Berlin for more than 50 years. Most recently, she worked in the youth welfare office in Berlin-Wilmersdorf. Cancer has also spread in her body. Especially when she talks about her daughters, tears come to her eyes. Falling in love again
My next goal is Easter. That’s when my American relatives are coming to Germany. I’m doing so well right now, I could do it. When I take on such small stretches, I manage better to detach myself from the big things. I would have enough ideas for a new book, but my scientific work is finished. I am no longer able to do that in terms of strength.
"I’m getting wiser again this close to death," says Siegfried Brauer Photo: Lia Darjes
I spent a large part of my life studying the reformer Thomas Muntzer, the leader of the Peasants’ Wars in the 16th century. In the GDR, they made a socialist out of him and named streets and squares after him in every village. That is nonsense! In the end, however, nothing will remain of my research. Others will overwrite my results. Books do not mean immortality and my entry at Wikipedia also not.
Doctors like to divide dying into phases: first comes the shock, at some point the sadness of having to leave, and at the end serenity. That is much too static. I have become more serene, but sometimes I grieve for myself several times a day.
If I had one wish, I would go once again to my home village in Saxony and look across the river to the Czech Republic. I was born in 1930 and lived through the whole Nazi era. When it was over, the communists said: Now everything will be different. And nothing changed.
First came the drums and the flags and then the invitations to join their organizations, which were half blackmail: Do you want to ruin your future? The question always came at the same time. I didn’t believe in communism for five minutes. And the communists didn’t believe in me either. When I was a pastor, I organized church services with bands. Every few weeks, the state authorities were at my door.
Pastors were important people in the GDR, sometimes the most important people in town. People could talk to me about what they were not allowed to discuss openly under socialism: embezzlement, bullying, the anger about the solidarity contribution for Vietnam, which was debited from people’s accounts without asking them. Then even the high party comrades were with me.
There were very educated people among the Marxists. In 1980 I became the director of the Evangelical Publishing House, and a clever and well-read censor controlled the books we published for the ministry. Today we are on first-name terms and see each other regularly. Many old acquaintances visit me anyway, and later a confirmand who has traveled all the way from Hanover will come.
I email many people because I want to know how they experienced our time together. I studied theology because a pastor said I was needed in youth ministry. He convinced my father. He actually wanted me to become a businessman, and I would have liked to study literature. In my life, I was pushed more than I went. But it’s the tension between what life throws at us and what we ourselves make of it that is fruitful.
I would have liked to find more time to walk with my wife. We were inundated with work and requests. If I have any real regrets, it’s that I didn’t pull the ripcord once in a while.
This close to death, I am wising up once again, with my wife. We rediscover our life together. We put our letters in order. My written communication has not known my wife. She worked in the church, she took care of our children much more than I did. Especially for our severely disabled daughter, who died when she was 14.
My wife has only just begun to see all the things I have done. Where I have been everywhere. It puts a whole new light on everything she did without, and it makes everything make more sense. She’s got me covered still and more. When translating from Latin, I often asked her. She’s an A-grade guy when it comes to languages. Our language teacher in college called me "Mr. Michael," meaning he addressed me by her last name, because she was his star.
When I had to lecture somewhere, I always said how important my wife was to my work. But I never put it in any of my books. What was holding me back? Perhaps my horror of the Americans. With them, the dissertations go out with this ringing, they thank the whole family right away.
After the death of our daughter, my wife developed a cultural life of her own that I knew nothing about. She bought an annual pass for museums and went out. For example, she was very interested in Queen Luise of Prussia. I, in turn, am only now learning about that. And I fell in love with her all over again.
Siegfried Brauer, 87, has survived with kidney cancer for more than seven years, but a few months ago he moved into a hospice in northern Berlin. In 2016, he still published a book about the church reformer Thomas Muntzer. Brauer studied theology in Leipzig and worked as a pastor. In our conversations, he talks like a preacher: entertaining anecdote – pontificate – and then the next anecdote. Live, live, live
This is simply the Wegsterbehaus here, ne? But I don’t really belong here, I’m going home tomorrow. Because I live alone, the doctor chose this hospice for me. He said: Let yourself be nursed there. If it was my time, I would stay. This is a good place to die, a quiet place.
"Dying is part of life, isn’t it?" says Regina Engel Photo: Lia Darjes
In 2015 I had a very bad cold, it was winter, everyone had a cold. I had a cough and was spitting up blood. That’s when I actually knew what was going on. I think you know inside: okay, this is bad for you now. But unfortunately you’re far too sloppy with your own health. I smoked all my life, I loved to smoke. Coffee and cigarettes were always such daily starters. What can I say? It was my own fault.
Then they operated on my lung, where the tumor was. But of course the cancer had already spread. Metastases in my brain, in my bones, everywhere, everywhere. For me it’s like this: My illness is my illness. There’s no whining about it. But what is really bad for me is when my children stand in front of me and cry. Because of me. I have two girls and a boy, they are between years old. It’s hard for the family to watch. I have a granddaughter who is four. She always says to me: Grandma, I don’t want you to go. What do you say? I don’t want to either? I don’t want to either. I’d like to stay. But life itself becomes difficult when you can no longer do many things and have to ask others. I was always very quick and fast. But that is no longer the case.
The importance of things in life has changed completely for me now. I used to think it was important to raise money and be hardworking so that I could raise my children. Today I think, pfff, money. You need money to pay your bills, that’s it.
I would never bother with two or three jobs again. There has to be another way. When the children were small, I worked extremely hard. And today I think: That has led to neglect. I can’t get that time back. How sad it is that you can’t turn back time and make it better. I think that a lot.
It is important that I tell my children that I love them. It’s not important that I can go shopping for them. Also, I would have liked to bicker less, with my mother for example. We didn’t have such a good relationship. I think I got carried away with a lot of things. You also have to be able to say: Okay, I’m going to take a step back and come at you and get over my own frustration. That’s something you should just learn and do. Not putting things off is also a very important thing.
I accompanied my mother to her death. She died so well, calmly and not in despair. She took away my fear of dying. In this day and age, nothing has to hurt anymore. We are in such a good position with regard to medication, hurray for morphine.
Dying is part of life, isn’t it? I think it’s straight to the top after that, and that’s where all my people are: my parents, my grandma, friends. I’m so convinced that it’s like that, maybe that’s why I’m not afraid.
I did everything I wanted to do. I went on vacation with my sister. We’ve never been before, so really. We were in Punta Cana, in the Dominican Republic. It’s paradise there: white beach, turquoise light blue sea. I also went swimming with dolphins, I really wanted to do that.
What advice do I give people? Live, live, live. Vacation, travel, see countries. Get to know people. Life is not just about working.
We have already thought about my funeral. "Life is beautiful" by Sarah Connor is supposed to play there. As it is in the song, so I see it: Life is still beautiful, even if someone dies. Of course, they’re missing, but life isn’t ruined for those who stay behind.
Regina Engel is 52, a true Berliner. She worked as a ward assistant in a hospital. During the conversation, her daughter comes to visit, bringing her ice cream, cocoa and cigarettes. Why should she do without anything now? Because Regina Engel collects medicines so that she can take her own life in an emergency, she doesn’t want her real name to appear here.