It was only when I entered the dying ward that I got to know my father again, who had emptied his memories

Stills from "Father Trapped in Time".

"To write about aging is to calmly recall youth, to write about illness is to cherish the beauty of health, and not to shy away from talking about death is to live better. ”

✎作者 | L

In the impression of writer Xue Shu, his father is the "person who can adjust the atmosphere" in the family. In the past, he loved to joke and always amused his family. The turning point occurred in 2012, and his father seemed to have changed, and when things didn't go well, quarreling was the first expression he thought of.

After noticing this, Xue Shu called his younger brother. The two talked about it, and initially thought that this was a common state for the elderly who had not long left their jobs - "retirement syndrome", "his wife is still working outside the home, and in contrast, it will make him feel that he has no contribution, and it is understandable that he is in a bad mood".

But after a while, my father did the same. Xue Shu thought to himself, this symptom is too bad. She typed keywords into the page, "senile depression" and "Alzheimer's disease" were the answers given by the website. Xue Shu's mood was a little complicated, "while doubting, while evading".

Her mother recalled an incident to her. A few days ago, the neighborhood committee informed Xue Shu's father to receive a bus card, and he went there twice, going around and around, but both returned empty-handed. "Forgetting" seems to have become my father's daily routine, and his temperament has also changed, "The person who used to be active and strong in action now feels annoying to do anything."

After many quarrels, Xue Shu's mother was overwhelmed, interrupted her work, and began to take care of her father at home. One day, my father was lying on the sofa, and after a long nap, he walked to the door and said coldly, "This place is not bad, where is this?" A few days later, he seemed to have forgotten all the things outside the door.

"When My Father Forgot Me"

Xue Shu said

Single reading ∣ Shanghai Literature and Art Publishing House 2024-1

01

"The struggles of the patient,

Probably a struggle for freedom and dignity"

It was not easy to take my father to the doctor. Xue Shu said: "The department corresponding to those illnesses is the psychiatric department, and when he saw those three words, he instinctively resisted. At that time, my father was still physically strong, so he often went out to avoid medical treatment. To put it mildly, Xue Shu persuaded his father and coaxed him to the hospital.

The results of the MRI showed that Xue Shu's father had a severe cerebellum atrophy. The doctor did not say "Alzheimer's disease", but he only suggested that since there is no specific drug for this area, if treatment is taken, stem cell transplantation can be used to relieve the symptoms as much as possible. Otherwise, the patient's forgetfulness will become more and more significant.

As a child, Xue Shu naturally accepted this diagnosis and treatment plan. But my father was worried and very entangled. At first, Xue Shu thought that his father was reluctant to spend the money for the operation. During a conversation, Xue Shu suddenly realized that the truth was not what she thought. "One day we were chatting and I said that I would not have surgery, and he was so relieved that he said, 'Daughter, I'm so happy'. ”

Later, Xue Shu thought that his father just didn't tell the sentence "I can call the shots in this matter". She reflected that her father was originally a determined person, making his own decisions in everything, and what he hated the most was that everyone was the same, and now, he has become a patient and seems to be forced to accept other people's choices. Xue Shu said: "I understand this behavior, on the one hand, he really wants to save money, and on the other hand, he wants to prove that he can still control the initiative in life." His struggle was a struggle for freedom and dignity. ”

Tianjin, November 9, 2017.

This hospital provides hospice care.

(Photo/Visual China)

In Xue Shu's memory, his father has always been a sensitive and strong person. As a young man, he traveled from Zhangjiagang in Jiangsu Province to Shanghai to make a living in a factory, "always maintaining a sense of vigilance, which is his survival instinct". He is self-motivated and positive, hoping that he can have a place in society, and he is gradually approaching his expectations.

became a family, and the family composed of a wife and a pair of children became the most cherished harbor for Xue Shu's father. In the process of educating his children, he often said, "You have to be able to afford to sacrifice." When she was a child, Xue Shu didn't understand much, but when she grew up, she realized that her father often suppressed and hid his expression of desire.

After the onset of the disease, my father's cognitive abilities slowly declined, and some of the character defects he had been wary of gradually became apparent. The quarrel between him and his mother became more and more intense, and Xue Shu often had to be a "firefighting team member". At first, as soon as Xue Shu received the call, he drove more than 70 kilometers from Hangzhou Bay back to Pudong. Later, she simply stayed at her parents' house.

During that time, Xue Shu's family struggled with his father's illness. Xue Shu did not have a relatively complete time, nor did he have the opportunity to calm down and write a novel. Whenever her father went to sleep, she wrote some fragmentary journals on the table, "writing something about my father every day, as a catharsis."

When he realized that this could be a book, Xue Shu took it more and more seriously - "When it came to some chapters, my dad fell asleep in the next room, my mom also fell asleep, I turned on the lamp, and in another room, I burst into tears. For Xue Shu, writing is an outlet for emotions, "on the one hand, it allows me to record everything honestly, and on the other hand, it also comforts me."

Screenshot of "Father Trapped in Time".

02

"Illness is a struggle for the whole family,

Write it down to resist shame"

Once Alzheimer's disease develops, the patient's confusion quickly manifests itself. Xue Shu's father had some hallucinations at an early age, which led him to make up a lot of past events, and sometimes blame his family for these things, and his mother was the biggest victim of them. One second, my father may have just made up a story about his mother's infidelity, and the next second, he went to the market to buy groceries.

At first, Xue Shu's mother called Xue Shu every now and then, crying about the harm she had suffered. Xue Shu felt powerless. After seeing these experiences, one editor wept as he told Xue Shu about his father's condition. She said: "My father has a similar situation, he writes to his first love every day, writing things like 'you are the only love of my life' and 'you are the one I will never forget', he has forgotten the present, but his wife is next to him, and he has to take care of him, and he will see such letters every day." ”

Situations like this often lead to conflicting emotions for those closest to them. However, it didn't take long for Xue Shu's mother to get used to this. After anxiety and entanglement, she calmly accepted the reality and took care of her wife day after day. Xue Shu said: "I think my mother is a very fateful person, and the advantage of accepting fate is that she can accept all changes. ”

Xue Shu's younger brother is also involved in this fight against the disease. He was working in other places, and when he learned that his father was ill, he considered returning to Shanghai to work. Throughout the process, he and his sister Xue Shu have always maintained close communication.

In the movie "The Long Goodbye",

The father played by Yamazaki Nu

Suffering from dementia.

One summer, Xue Shu visited abroad, and his mother took care of his father at home alone. One day, his father ran outside, and Xue Shu's mother couldn't persuade him to return, so she had to follow him while calling her son. On the phone, the son showed his father the way and explained where he should go to get home. The father knew that his son was on the other end of the earpiece, so he agreed to it one by one. But by the time his son actually returned to him, he couldn't remember the person in front of him.

Xue Shu said: "My father's confusion made the whole family chaotic. Before that, she had heard a similar case. The man was a doctor, about the same age as her father, and after experiencing the same symptoms, his family said they couldn't take medicine because "you would be stupid if you took it." There was a lot of noise in the house, things were smashed, and the family locked him in a small room. Xue Shu thought: Is this the cherishing of life?

In order to control the condition, the doctor prescribed psychotropic drugs to suppress his hallucinations and mental problems caused by cerebellar atrophy. Gradually, the father quieted down, but with it, a decline in cognitive ability. Xue Shu knew in his heart that one day, his father would forget all this.

Xue Shu wrote these down one by one, and put his inner feelings and the past of his family into "When My Father Forgot Me". Xue Shu said: "When I write and dissect myself and my family, I ask myself to be honest, but at the same time, I inevitably feel ashamed because I reflect on myself and my family, and dig into human nature. I think that by salvaging these memories with my writing, I am actually resisting this sense of shame. ”

In "The Long Goodbye",

Old photos of father and mother.

03

In the hospice,

Complete the long goodbye

After suffering from Alzheimer's disease, Xue Shu's father went back to his hometown once — a decision made by the family after discussion. Xue Shu recalled that during the days when he returned to his hometown, his father was noisy for a day, "probably because there were so many relatives and friends, which created a lively atmosphere, and he felt very good in that environment."

At the dinner table, Xue Shu's father often did not match the words before and after, and the relatives in his hometown laughed, and he laughed along. He couldn't feel that people were actually laughing at him. Xue Shu said: "Actually, he can't recognize everyone anymore, but in a group of strangers, he still wants to maintain an innate cheerfulness and decency." ”

Later, the father forgot and disabled the family, and these happened in turn. Like all patients, he was admitted to the geriatric ward. In that room, he lived for five whole years. Xue Shu wrote in the book: "He existed in the form of a body that constantly exuded the smell of corruption, like a wounded old animal, broken and dying. Talking about the changes in her father in the ward, Xue Shu described it as "living slowly", saying: "There is no change, he just lies there, at most he makes some screams." ”

March 24, 2021, Shenyang.

of a community health service center

In the geriatric ward, the family will share the patient's wishes

Hang on the Wish Wall. (Photo/Visual China)

In the ward, Xue Shu saw a lot of people coming and going, including nurses and patients who "were still asking you to beg for apples yesterday, and today you will 'ascend to heaven'". She said: "Only after going through that process will you know that in the hospital ward, everything is normal, and people will become calm." It became a place of crying and laughter. They are constantly aging, while maintaining a touching innocence. They accept oblivion, and they also welcome death. ”

In 2020, at the height of the epidemic, Xue Shu's father passed away. There was no memorial service, no ceremony, only a short five-minute farewell between the three closest relatives and their father. Sometimes, Xue Shu thinks that her father's choice to leave on that day is, to some extent, to take care of her. "He didn't have to grieve and worry about taking care of the family and friends at the funeral, so that we didn't have to deal with the tedious rituals. It could be that he was being considerate of me and taking care of me in another way. ”

Before his father left, Xue Shu wrote several novels set in a hospice. The writer walked around and commented on Xue Shu, saying that she "did not use her own black hole to write about the warmth of the world, but used her own warmth to write about the black hole of the world". In the spring of 2022, Xue Shu completed the book "Life in the Hospice" at home, telling the story of his father's journey in the last five years of his life. Those nurses and patients also appear as part of the story.

   "Life in a Hospice"

and "When My Father Forgot Me"

It constitutes the "Two Parts of Life".

"Life is meant to change people every day, and people are meant to be changed," she said. Different views on literature at any time are staged, or the means of literature will be different for different writing objects. And literature itself will not change, whether it is towards material, spiritual, aesthetic, or human nature, the attitude of literature will not change, that is, truth and sincerity. ”

In the eyes of many people, it is cruel and tragic to write about his father's illness and death without reservation. In this matter that many people are unwilling to face, what Xue Shu wants to do is to "show some kind of warmth". She said: "We still have to see that writing about aging is to calmly remember youth, writing about illness is to cherish the beauty of health, and not shying away from talking about death is to live better." ”