Fight against dementia: A forgotten life

Does she know how hard she fought it? Who knows if she feels anything at all. Waltraud is 81 years old. She is lying in bed with her vacant eyes open, gazing at the small TV across the room. It is Sunday evening. The clock on the wall stopped at 1.20pm. Time does not matter to her anymore.

Waltraud is my grandmother, though she does not know that these days. Waltraud suffers from dementia.

By definition, dementia is a 'decrease in the ability to think and remember that is great enough to affect a person's daily functioning'. Waltraud has forgotten how to eat, how to speak, and who she is. She has been defeated by her greatest fear.

Waltraud knew how cruel the disease was and how it could change people. My great-grandmother had also suffered from it. After her death, Waltraud found a letter addressed to her that said, 'God will punish you!' She knew it was the disease talking, not her mother. But it bothered her anyway. After everything they had been through in their lives….

My grandmother never really told me about her life. But she wrote it all down in diaries and letters. She kept files and documents. Every argument was taken note of, along with every kind word that was said to her. In writing, she preserved every happy day and the many dark ones. Therefore, the day she lost her mind was the day I began to get to know her.

It is 7 July in 2006. My father's cell phone rings. It is the Lübeck police department. They tell him they found Mrs Gennies in the streets. She seems confused and helpless.

Waltraud had been on her way to the laundry. She was carrying a couple of bags and it was hot that day. Half-way there, she needed a break. So she sat down in the shade of a tree and waited. When the policeman asked for her address, she could not remember it.

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The next day, my father and I were off to Lübeck.

I knew that my grandma was born on 9 October 1934 in Memel, an area in present-day Lithuania. I also knew that she spoke Russian fluently and that she moved to Lübeck at some point in her life. That was about all I knew.

She had just been the grandmother who took me to the puppet theatre every once in a while. She gave me pullovers as a birthday present. She promised to take me to Paris so we could see the Eiffel Tower-someday when she would not have to take care of my great-grandmother Trude anymore. She was a serious woman who was on a first-name basis with almost no one, not even her friends or neighbours.

As she opens the door in summer 2006, I instantly know that the grandma I knew is gone. The hallway is packed with bags filled with laundry and garbage. There is toilet paper on the kitchen table, pots and pans on the floor.

The main cause of dementia is Alzheimer's disease. There are an estimated 46.8 million people worldwide living with dementia. The disease is subdivided into seven stages. The day the police called my dad, Waltraud had already reached Stage 5-moderately heavy reduced perceptiveness. She could not remember her address or phone number but she still recognized us.

I, however, hardly recognize her. She looks confused and her hair is disheveled. Usually, we visit her once a year. How did she become this way? When?

She has put up post-its everywhere in the flat. In her calendar, she notes every phone call, every show she has watched on TV, and what the weather had been like on a certain day. We hoped these notes would tell us more about her condition. But as we go through her diaries and letters, one thing becomes clearer with every page we turn: I never had a clue who she really was.

Waltraud is afraid. It takes time to persuade her to come with us. Meanwhile, my mother registers her in a nursing home in Bavaria, where my father lives. As she leaves her flat with us, she whispers, 'So this is it then.'

Later, as we dissolved her household, we found more and more letters, documents, and diaries. It took me 10 years to find the courage to go through it all. Her personal archive tells the story of a life she had never wanted to discuss.

East Prussia, World War II: 'We had a small farm, some cows, chickens and an evil dog,' reads one of her diary entries. 'My father rarely was at home but he taught me how to dance the waltz. I was very sad when he had to join the army in 1940.'

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The family tried to escape the war in 1944 but it was too late. 'On my 10th birthday, the Soviet army intercepted us. A soldier tried to rape me but let go of me when I started crying.' On 28 January 1945, she witnessed the battle of Memel: 'The sky was glowing. As we walked home we saw bodies everywhere in the streets.'

Now, 60 years later she sits beside me on the backseat of my father's car. She has never mentioned what she had to live through. She gazes at the sky through the windows of the car: 'Sidney, do you want to play a game? If you look at the clouds long enough you can see figures.' I play along, saying, 'I see a rabbit.' My grandmother giggles, 'Don't be silly!'

She was not allowed to leave the Soviet Union until 1958. The family eventually reunited with Waltraud's father. After the war, he had become a prisoner of war and was released to Lübeck later.

In East Prussia, Waltraud once knew a boy who she had admired since she was a little girl. He was the first to get a postcard once she arrived in Germany: 'When will we see each other again?'

The boy's name was Helmuth Gennies. He was my grandfather though I never met him.

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Over the years, Waltraud wrote hundreds of letters to Helmuth. He lived in Eastern Germany, Waltraud in Western Germany. As a result, they could hardly ever see each other. Then Helmuth went to Berlin to study theology and Waltraud got a job at a hospital in West Berlin. 'In the night from 12 to 13 August I was working a night shift. I only learned what had happened the next day.' This was in 1961; it was the night the Berlin Wall was built.

Three years later, on 17 April 1964, she boarded a train with nothing more than a suitcase. The East German border patrol took her to a camp guarded by soldiers. The other inmates asked her, 'Did you also run away from your parents?' She had not. She had deliberately moved to the German Democratic Republic (GDR) so she could be with Helmuth.

Our trip from Lübeck to Bavaria takes five hours. My grandmother is silent for most of the journey. Once we arrive at the nursing home, I help her get out of the car. We enter the building. It has the scent of disinfectant. Her room is in Station 1, the secure section of the nursing home. We ring the doorbell and a nurse opens it. Some of the residents are standing in the hallway. One woman is screaming while another is chewing on a towel. Her nursing home file later states, 'Waltraud joined a group activity. She sang old songs with the others. But after only a few minutes she said she was too sad to keep singing.'

She also stops eating. Weight: 34.8 kilograms. Risk of self-endangerment: 'Very high'.

There have also been happy times in my grandmother's life. Helmuth became a priest and took care of a congregation in Hordorf, a village in Saxony-Anhalt. For more than 20 years, they lived together in the red vicarage, Kirchenwinkel 7.

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When Helmuth held a service, my grandmother would sit in the front row. Whenever he preached longer than 20 minutes, my grandmother would audibly clear her throat. If it were up to him, my grandfather could talk forever.

In those years, my grandmother took notes about almost everything in her calendar. In 1964, for example:

14 May, Wedding.

8 October, 5.45pm, MARTIN, 3,900 grams, 58 cm.

She also wrote down that my grandfather had a cold in February 1970 and my dad did not want to go to school one day in 1974.

However, there is not a single entry about my father's two sisters, both of whom died only days after they had been born. Waltraud must have erased those entries afterward. With her suffering from dementia, every memory of those two girls is now gone. There are no graves to remember them by either. There is only a file that we found in the archive of the East German intelligence: 'G. had three children. Two of them are dead.'

Being the wife of a priest in the GDR meant being under surveillance. An intelligence officer wrote, 'She does not have a very high opinion of our workers and peasants state.' Another added, 'All in all she makes a good impression. She's always dressed appropriately.'

One afternoon at the nursing home, Waltraud is standing in her room, praying silently. As a nurse enters, she asks Waltraud if she would like to say a prayer together out loud. 'She happily hugged me and said, "This was my greatest present today!"' the nurse later notes in Waltraud's file.

When I visit her, she calls me Martin. She cannot tell my father and me apart. This is Stage 6: You can tell that a face looks familiar, but you cannot remember the name. She turns to my father, 'Helmuth?'

The last time she saw Helmuth was in 1986. He was in rehab after a heart attack in the town of Bad Bromburg. She was informed about his death on the phone. Apparently, he had another heart attack. He was going for a walk in the woods when he collapsed. With the help of two men, he managed to reach the front door of the clinic. 'The doctor was called twice. It took him 10 minutes to arrive. Meanwhile, Helmuth had turned silent,' my grandma wrote in her diary one month after his death.

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There is a picture of Helmuth on her cabinet wall at the nursing home. She does not care anymore.

After one year at the nursing home, her file states, 'All she talks about is faeces and the "downfall". Having a normal conversation is impossible.' When we visit her, the silence is awkward. My father therefore now reads short stories to her every Sunday.

The first time Waltraud mentioned me was in a long letter to her mother in 1988. Having spent her youth in war or as a refugee, Waltraud was outraged that her 21-year-old son would become a father at such a young age: 'I think we both will have to get used to our new roles as grandmother and great-grandmother respectively. But this thought is not as absurd as the thought that those "kids" are soon to become parents!'

After the Berlin Wall fell, Waltraud moved to Lübeck to take care of her mother, who by then showed symptoms of Alzheimer's disease. 'She forgets everything! It's a big problem. Like talking to the wind.'

The darkest hours Waltraud always faced alone. When we were visiting her in Lübeck, she would serve tea as usual. But beneath the calm surface, Waltraud was desperate.

23 March: 'This is like war. Her snooping around is unbearable.'

24 March: 'It's a catastrophe. When I try to clean her bedpan, she always tries to get it back. She is obsessed!'

25 March: 'Found a puddle in the hallway. Right where I keep my shoes.'

And over and over again she wrote: 'It's unbearable.'

Her son and her grandson sent her postcards from Egypt and Indonesia.

7 October: 'She always wants "to go home". When I ask her where that is, she answers: "East Prussia". I can't calm her down. She would kick and beat me.'

After her mother's death, there is only one more entry in that diary. Waltraud was there when she died, sitting right next to her bed. She said a prayer and apologized for every mean word she had said due to her own frustration. 'Death gave her back dignity. They took her away at 11.30am.'

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If there has been a case of Alzheimer's in the family, the risk of some day also suffering from the disease is much higher as well. Waltraud knew that and she tried to fight it. She took courses at community college: 'Train your Brain!', 73.40 Deutschmark.

I sent her postcards from Kenya, the USA, and France.

In the afternoons, she went dancing; every Monday, she took an English class. She now had a lot of time on her hands. Sidney, when will we go to Paris?

It did not save her memory but she went on writing a diary even after moving to the nursing home.

8 July 2006: 'Expensive nursing home. I fear my pension won't last long.'

8 August: 'I'm freezing like an Eskimo.'

15 August: 'I believe it's August already.'

Then nothing.

I visit her in February 2016. Someone has pinned a photo of the Eiffel Tower to the door of her room. Inside, you smell the scent of urine and death. This is Stage 7: In the final phase of the disease, you completely lose the ability to communicate, even the ability to smile.

'So long,' I tell her while leaving.

We never visited Paris.