Does she even know how hard she fought? Watching my grandmother lie listlessly in bed while the TV blares, it’s hard to know if she feels anything at all. She has been defeated by what she most feared; dementia has robbed her of her ability to eat and speak or even know who she is.
My grandmother Waltraud knew how cruel the disease was and how it could change people. She had cared for her mother but after my great-grandmother died, also having had dementia, Waltraud found a letter addressed to her that said, ‘God will punish you!’
She knew it was the disease talking, not her mother, though it bothered her after all they had been through.
I didn’t really know much about my grandmother’s life, but she wrote it all down in diaries and letters, documenting every harsh word and compliment. So, just as she was losing her mind, it was through her writing that I got to know her, learning of the happy days and darker times alike.
My grandmother was born in Memel, in what today is Lithuania, in October 1934. She spoke Russian fluently. At some point, she moved to Lübeck, a town in northern Germany.
My journey towards knowing her better started with a call from the Lübeck police in 2006. They called to tell my father they had found Mrs. Gennies in the street, confused and helpless.
Waltraud had been on her way to the laundry. It was hot, and she was carrying a couple of bags. She sat down for the rest in the shade of a tree and waited. When the policeman asked her address, she could not remember it.
My father and I headed for Lübeck the next day. And when she opened the door, I saw straight away that the grandmother I remembered was gone.
She had been a formal, formidable woman, who nonetheless took me to the puppet theater every once in a while, gave me sweaters for my birthday and promised to take me to Paris one day to see the Eiffel Tower.
But when we entered her home, we found the hallway was packed with bags of laundry and garbage, toilet paper on the kitchen table, and pots and pans on the floor.
The family tried to escape the war in 1944 but it was too late.
The main cause of dementia is Alzheimer’s disease, which affects 46.8 million people worldwide, according to estimates. Doctors identify seven stages of the disease. By then, Waltraud had already reached stage 5, where perception is heavily reduced.
She couldn’t remember her address or phone number, though she still recognized us. But in her dishevelment and confusion, I could barely recognize her. How had she gotten this way?
She had fought hard, plastering post-its throughout the flat, noting in her calendar each phone call, the weather, the shows on TV. We hoped these would tell us more about her condition but going through her diaries, all I realized is that I never really knew who she was.
Afterwards, as we cleared her apartment, we found more and more letters, documents, and diaries that told us of the life she had never told us about.
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.”
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 January 28, 1945, she witnessed the battle of Memel: “The sky was glowing. As we walked home we saw bodies everywhere in the streets.”
She wasn’t allowed to leave the Soviet Union until 1958. Eventually, her family reunited with her father. He had been a prisoner of war and was released to Lübeck after the war.
There was a boy she liked, back in East Prussia. When she got to Germany, she wrote him a postcard: “When will we see each other again?”
His name was Helmuth Gennies. He became my grandfather, though I never met him.
Over the years, Waltraud wrote hundreds of letters to Helmuth. He lived in East Germany, Waltraud in West Germany and they hardly ever saw 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, the night the Berlin Wall was built.
Three years later, on April 17, 1964, she boarded a train headed East, carrying 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 run away from your parents too?” She had not. She had deliberately moved to the German Democratic Republic (GDR) to be with Helmuth.
Being the wife of a priest in the GDR meant being under surveillance.
Now, taking her from Lübeck to the home in Bavaria where she lives not far from my father, my grandmother is silent. The nursing home smells of disinfectant. One resident screams while another chews on a towel. Later, it says in her file, “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 later stopped eating and her weight fell to 34.8 kilograms. Risk of self-endangerment: “Very high.”
In my grandmother’s life, there were also happier times. Helmuth became a vicar and they lived together in a red vicarage, in a village in Saxony Anhalt. 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.
Her notes in her calendar tell of happy times, such as 1964:
“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.
There are gaps too: no mention of my father’s two sisters, both of whom died only days after they were born. Waltraud must have erased those entries later. There are no graves to remember them by and with her dementia, every memory of those girls is now gone. Only in the archives of the East German secret police is a report stating, ‘”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.”
Later, Waltraud found comfort in prayer. One afternoon at the nursing home, she stood in her room, praying silently. A nurse asked her whether they would like to say a prayer together out loud. The nurse later wrote in Waltraud’s file that she hugged her and said, “This was my greatest present today!”‘
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?”
She last saw Helmuth in 1986, when he was in rehab after a heart attack. He later died of another heart attack, collapsing in the woods. She described the day in her diary a month later.
A picture of him hung in her nursing home wall, though she no longer seemed to care.
After one year at the nursing home, her file stated, “All she talks about is feces and the ‘downfall.’ Having a normal conversation is impossible.”
When we visited, there was an awkward silence. My father read her short stories.
The first time Waltraud mentioned me was in a 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: “We both will have to get used to our new roles as grandmother and great-grandmother respectively. But this thought isn’t as absurd as the idea that those ‘kids’ will soon 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!” she wrote. “It’s a big problem. Like talking to the wind.”
The darkest hours Waltraud always faced alone. When we visited her in Lübeck, she would serve tea as usual but beneath the calm she was desperate.
March 23: “This is like war. Her snooping around is unbearable.”
March 24: “It’s a catastrophe. When I try to clean her bedpan, she always tries to get it back. She is obsessed!”
March 25: “Found a puddle in the hallway. Right where I keep my shoes.”
Over and over again she wrote: “It’s unbearable.”
October 7: “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.”
Waltraud was with her mother when she died. “Death gave her back dignity. They took her away at 11.30am,” she wrote in her diary. She said a prayer and that she was sorry for harsh words spoken in frustration.
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. Waltraud knew and she tried to fight. She took courses at the community college: ‘Train your Brain!’ In the afternoons, she went dancing. Every Monday, she took an English class – she had time on her hands. She asked: Sidney, when will we go to Paris?
Later, in the nursing home, she kept writing.
July 8, 2006: “Expensive nursing home. I fear my pension won’t last long.”
August 8: “I’m freezing like an Eskimo.”
August 15: “I believe it’s August already.”
I visited her in February 2016. Someone had pinned a photo of the Eiffel Tower on the wall of her room, which smelled of urine and death. This is Stage 7, when you lose the ability to communicate, even the ability to smile.
We never did visit Paris.
Sidney Gennies writes for Tagesspiegel. To contact the author: firstname.lastname@example.org