It was a cool day with wisps of high clouds. A flock of finches was looking for food among the raspberry bushes.
I was working on the idea for my novel All About Sally and drinking coffee from a battered old cup when my mobile rang. It was Maria, one of the carers. She had wanted to give my father a shower, but he hadn’t wanted one, and so he locked himself in the bathroom the moment she left the room. Now he wasn’t coming out.
I went upstairs to help. I begged repeatedly before my father opened the door. He was sitting on the bathroom stool in his trousers and a white undershirt, his skin hanging slackly from his arms. The two towels around his neck were knotted together on his chest, and in one hand he held up a long-handled back scrubber, and in the other, nail clippers with the file flicked out. He did look like a king now, with a sceptre and sword. But his face bore the mark of madness.
I asked if he wanted to watch television with me.
He didn’t look at me and his grim expression suggested he was determined to take things as far as possible. He was hallucinating. He kept looking into the shower and asking what he should do with ‘the others’.
Since he was fumbling around with the giant brush and the file all this time, I was a little distracted. Instead of calming him down by letting him know I’d protect him and chase off ‘the others’, I tried to divert his attention – in vain. He still felt threatened. With his head hunched over, he kept darting glances left and right, alert to any dangers.
When I tried to take the scrubber from his hand, he made as if to hit me. I jumped back in surprise and then gave him an earful, shouting, ‘Are you crazy? You’re a pillar of the community – and that’s how you behave?! Who taught you that? Certainly not your mother! And you never taught us, your children, to do anything of the sort!’
I really let rip, mentioning all the things that would cut him to the quick. Interestingly, the lecture had an effect. He looked disconcerted, as if he were ashamed. Of his own initiative, he put down the scrubber and agreed when I said I was going to take the file. Now the worst was over. I helped him on with his shirt and steered him to the television. He appeared relaxed, exaggeratedly cheerful, and ready to joke around. Meanwhile, Maria was crying in her room. She had struggled with him for an hour and let him threaten her with the scrubber many times.
I called Helga, who was often first in the line of fire. Could she come and be there for Maria? I spent the evening with our father. The incident in the bathroom was the first time he had become aggressive. That night he was cheerful and made a special effort to be friendly, as if he knew that I was worried about him, and as if he were determined to make us forget his actions. This time the hellfire had only singed us.
But at that moment I couldn’t see a way forward. Our father couldn’t afford too many outbursts like this. His carers reacted badly to such escalations and he had even scared me – I’d had visions of a violent madman.
My father’s sense of things might have been, What does this woman want from me? That I shower? Just a trick! I’m not going to let strangers boss me around any longer. She barely speaks German and yet she thinks she has the right to order me around. Suspicious behaviour.
He didn’t like to remember the Soviet nurses from that ramshackle building near Bratislava. They had given him orders instead of care. Maybe something from those distant days had stuck and was now surfacing. No idea. In any case, it was a strange coincidence that his carers came to him in Wolfurt from Slovakia, and some were from Bratislava itself.
That evening we watched Candid Camera together. My father was interested, would laugh and comment on the ‘nonsense’, as he called it, while I typed up notes on my laptop about what had happened. I had given Maria the evening off, to recover. She missed home. A few days later, she quit.
Was it on that evening’s Candid Camera that there was a scene in a hotel lift with the doors shut? Suddenly, the light went out, and when it went on again a few seconds later, a young man was missing. Only his bag was left on the floor. Most of the people in the lift reacted in shock, although one woman couldn’t stop laughing hysterically.
When my father hallucinated, it must have felt similar in his head. Suddenly, the light would go out and he would be faced with a changed situation, with no explanation. A brain that has to constantly deal with such strange occurrences can’t help but go into a state of alarm.
*
A few weeks later, Aunt Hedwig, Emil’s wife, left a message on my answering machine. I called her back. It was about Katharina, my cousin Maria’s daughter. A viral infection had left Katharina paralysed for weeks, and she was able to move only her eyes. Afterwards, she had recorded the whole experience, including the nightmares brought on by the medicine. Aunt Hedwig and I also talked about my father. She mentioned a trip that my cousin Stefan had gone on with him, during which my father made a point of saying he’d always had it good in life. Aunt Hedwig was quite amazed at that. She heard so few people say anything like it. She commented that his attitude was all the more remarkable when you recalled the photo taken after his captivity.
I replied that it was a shame the photo had been lost along with his wallet. Aunt Hedwig said, ‘Oh, Arno, we’ve got a copy. No idea how we came by it, but we’ve got one.’
‘Are you sure?’
I described the photo.
‘Yes, I’m sure. If you want, I’ll dig it out for you. You can pick it up tomorrow.’
So I picked up the photo and made a copy of the copy and was allowed to keep the original copy. It’s one of the things I treasure most.
The stamp on the back of the photo reveals that Emil made the copy in 1995, when he and my father were already old men. 1995. It was around then that the whole mess started.
You know, I’m not such a young lad. You, on the other hand – you’re a spring chicken.
True enough.
Some bits of me have got old.
But however old a person gets, he can always learn new things.
Not me, sadly. There’s nothing more in me. And I’d be very happy if I could soon… soon… soon… not have to help out any more. I’d prefer to take a stroll and do nothing.
You can do nothing as much as you’d like.
That’s what you think. There’s always something or other to be angled into place. But I want to give that up soon.
The water was gurgling down the drainpipe, a mesmerising and somewhat hostile sound. Against time and the weather we are powerless.
I mentioned the rain to my father. He looked over at the window and said, ‘Oh, the beautiful times when I was young, when I was young, it was still beautiful outside. Now it’s grim – grim.’
He hadn’t completely lost his sense of time yet, but, as he put it, he had ‘a screw loose’. Confusingly, the very thing he kept was an understanding that his abilities were waning. It was an increasingly common topic of his conversation, something I found all the more surprising, given the fact that he was no longer able to master everyday tasks. He didn’t know if he was hungry or thirsty, and it was ‘not an easy thing’ to eat and drink in the usual way. Once, a slice of bread was on his plate and he apologised for not knowing what to do with it. He asked me for advice.
‘Just take a bite,’ I said.
Instruction didn’t help. He answered sadly, ‘Hmm. If only I knew how. You know, I’m a poor devil.’
He said he was a poor devil every few hours, but certainly not always in a sad tone or out of protest – normally in a friendly way, as if he had to make an important statement. ‘I’m a person who has no say. Nothing to do about it now.’
Sentences like this could have come from a Kafka or Bernhard character, I thought – what a perfect pair, someone with Alzheimer’s and a writer. In Frost, Thomas Bernhard’s protagonist laments, ‘But I’m utterly incapable, utterly incapable.’ And at another point, ‘Everything is incomprehensible to me / I don’t understand anything / Nothing makes sense to me.’
r /> ‘I don’t understand all this!’ my father kept saying, a comment on the opacity of the system into which he’d been dragged. And his follow-up sentence was categorical – ‘I’m nothing now.’
Often my father went into detail in his evaluation of the situation. A shiver went down my spine at the calmness with which he made announcements about himself.
‘I’m a nobody,’ he said. ‘Yes, yes, I was once upon a time. I started strongly. But now, I’m old… and with age came a certain lack of concern… no, not a lack of concern… that’s a bad expression… problems arose.’
He made a sign for The End by crossing and uncrossing his hands in front of his stomach. Then he started to look in different drawers, opening and closing them. When I asked what he was looking for, he couldn’t give me a concrete answer.
‘Nothing. Nothing to pass on to someone or to work on.’ He added a ‘Yes, yes’ and then said, ‘I’ve seen things too, and in principle I’m happy I did. But I’m in no state for that any more.’
‘And what state are you in, would you say, Dad?’
‘A weak one. I can only achieve things with other people’s help. Nothing much going on with me nowadays. Well, well, that’s life, and I can’t change it. A lot went wrong in my life, there’s a lot – well, a lot could have gone better. But I don’t mourn it. I have no complaints, although I haven’t managed to do much lately. At first I still could, but then it got worse. I’ve had bad luck, too.’
‘What bad luck did you have?’
‘Something broke in my hands. Things weren’t worth anything any more… not that I want to blame others. It was a loss of strength. I’m no longer fit for things. I haven’t flourished in – let me see – months. Maybe even longer.’
‘What were the times when you did flourish?’
‘I don’t dwell on them. I had good times. I was often happy. But… but… but… they’re over now. Yes, some bits of me are broken, I know. But I don’t need them any more.’
He went to the door and exclaimed, ‘For God’s sake!’ Five seconds later, he sang a few bars of a song, then peered into the pots on the stove and went out into the gazebo. When he came back, I asked, ‘And? What’s new?’
‘With me, nothing – there’s nothing new with me. With you, always, and I’m happy about that. You know, nothing’s going on with me. I’m weak, I achieve little, and that’s how things turned out.’ He sang a few more bars. ‘Soon, I’ll… lie flat.’
‘What?’
‘Do nothing. You know, I’ve got no important matters to hand. That’s my feeling. I can’t prove it, but my feeling is that I’ve got nothing important to hand. Yes, that’s how it is. Whatever still has to be done, has to be done by other people.’
‘No need to worry. I’ll take care of things.’
He laughed and, taking my hand, said, ‘Thanks, I just want to say thank you. I’m a poor devil. Once I was a – thanks for not making a fuss that nothing’s going on with me.’
‘Dad, everything’s been done, everything is arranged. Now the sun’s setting.’
‘Do you think so?’
‘I know it.’
‘Thanks for telling me that. Unfortunately, I’m no good at anything any more.’
Then he sat down at the table and lowered his head onto his folded arms.
*
He was often worried that something might be left undone. When I came down from the attic one evening, I bumped into my father and his carer Ludmilla in the first-floor hallway. Ludmilla was trying to put him to bed, but he was concerned that not everything was done and that someone was waiting for him. I told him there would be nothing more today, and it was bedtime for everyone. Distressed, he asked, ‘And who will dismiss the crew?’
I took his hand, and, squeezing it briefly, said, ‘I’ll dismiss them. They can go home now.’
Behind his doubt, a smile started to spread over his face. With a wink he said, ‘You’re my best friend!’
*
Everyday interactions with him were increasingly like fiction. We accepted all the faulty memories, paranoia and workarounds with which his mind defended itself against the hallucinations and everything else it didn’t understand. The only remaining place where we could be together was the world as he understood it. We would say everything we could to affirm his sense of things and make him happy. We learnt that holding sanctimoniously to the truth was the worst approach of all. The truth didn’t get us anywhere – it served no one well. To give someone with dementia an answer that, according to the usual rules, is objectively correct, but which pays no attention to the place where that person finds him- or herself, is to enforce a world that isn’t his or her own.
So we struck out away from sober reality and would only return after long detours. When our father wanted to go home, I’d say, ‘Let’s see what I can do for you, I think I can help.’ And when he asked after his mother, I pretended to believe she was still alive and reassured him that she knew about everything and was taking care of him. He liked that. He would beam back at me and nod. His beaming and nodding were the return to reality.
Objective truth was often thrown under the bus. I didn’t care – it was worthless. At the same time, I took more and more pleasure in letting my responses slide into fiction. There was only one standard in use: the more something soothed our father, the better.
In daily dealings with him, much was a question of technique. What was demanded of us was extremely complex. Terrible as it was for my father that his brain was deteriorating, for his relatives it was true that adversity sharpens the mind. Conversations with him were good mental exercises. They required a considerable amount of empathy and imagination. A good one managed, with the right words and the right gestures, to banish his unease for a while. As Felix Hartlaub once said in a different situation, ‘Only officially recognised tightrope walkers can survive here.’
Daniela said that putting my father to bed and getting him up in the morning wasn’t as difficult when she asked him questions.
‘Are you tired?’
‘Yes.’
‘Would you like to go to bed?’
‘Yes.’
You had to try to get him to express the desired wish through your questions. In this way you could bring some order to his disordered world. Commands, on the other hand, didn’t work. If she said, ‘August, you have to go to bed now,’ then he would ask, ‘Why?’
Once, when Daniela was ironing, my father lost patience and said he was going home – no question about it, he wasn’t going to stand for it any more. Daniela looked at him in shock and said, ‘August, you can’t leave me here on my own! What will I do without you? If you go, I’m coming, too. But I just need to do the ironing first.’
He saw the point of that, and she said thanks. Daniela told us she always said thanks, even when she had just done something for him. It built him up, left him contented, and created a certain dependence. He would look for her all day, following her around the house. He needed a sense of security. Then he felt good. He knew that he needed someone if he were not to drown. Once he told her, ‘I live in this house that I built all on my own. None of my family are here right now – I’m alone with my carers.’
Once when he asked me who was in the house besides him and me, and I told him that no one was, and we were alone right then, he found the answer unnerving. He said, ‘That’s no good. I need care. I’m in trouble without care.’
Such statements always shook me, because I never expected such a clear-eyed appraisal of the situation from him. I quickly said, ‘I’m here. I can care for you.’
His expression brightened up and he replied, ‘I think highly of you for that, for taking the time.’
On another day he said, ‘No one has ever done anything for me. You, perhaps?’
‘Yes, I have. Sometimes.’
Bitterly, he retorted, ‘You’ve never done anything for me!’
*
Of all the carers, Daniela got along best with him. I
could only shake my head in amazement at how well. I came up to them once when she was showing him photos of her husband. My father said he knew the man. Impossible, she replied, her husband lived in Slovakia. My father replied, ‘I like you, even though I don’t believe what you’re telling me.’
She insisted that her husband had never visited Vorarlberg and that he couldn’t speak a single word of German. ‘Not a single word!’ she repeated, to which my father said, ‘You’re a nice woman. There’s nothing more I can add.’
Daniela said that her time with my father wasn’t difficult. She said you just needed patience. If he didn’t want to get up, she waited for him – she had time. And if he didn’t want to shave, she said it didn’t matter. Half an hour later, he’d normally forgotten that he’d just refused her. Each day she could wait as long as need be, twenty-four hours if necessary.
Most of the other carers didn’t fare as well. When he refused to do something, they would get nervous. Finely attuned to their nervousness, he would then be unable to appreciate their attention. Discouraged by such incidents, the mutual unease would ratchet up so high that, although our family gave extra support in such moments, there were more and more days where we were all ready for a straitjacket by the evening. Sometimes, standing under the shower, I had the feeling that I was still running. Once, when I passed the wardrobe, I felt a need to sit inside it. At night, staring from hot and sleepless eyes into the uncertain future of the next day, I recalled the Latin expression nox est perpetua. Night never ends.
*
Now and then, something like hope returned. But the lulls between outbursts became shorter and shorter. There was nothing we could do to change that. In an unpredictable atmosphere, the tension was sometimes hard to bear. It was terrible to see so much suffering on every side. The dysfunctional relationships between our father and some of his carers only fed the illness. The carers quickly reached their limits, which in turn had a negative effect on our father. The downward spiral continued.
The Old King in his Exile Page 7