Love you forever (accompany your mother to the end of her life)

When my mother's Alzheimer's disease developed to the late stage, she suddenly stopped looking up. Lu Xiaoya needs constant massage and relaxation. (Photo courtesy of the interviewee/picture)

A memory test for Alzheimer's disease is like doing homework. Lu Xiaoya coaxed his mother to go to the hospital and finally finished her homework. Seeing this result, her mother flew into a rage and shouted in the corridor: "Nonsense! Who says I have a bad memory? My memory is better than all of you! I'm not sick! "

Signs have already appeared. My mother calls a dozen times a day and asks the same question-I can't find my passbook. When I got home, the door was open and no one was there. Neighbors smelled burning and complained several times. Mother forgot to turn off the fire, and all the pots and pans in the house were burnt.

It was in 2006, a year before Lu Xiaoya retired, that her mother was diagnosed with Alzheimer's disease. Lu Xiaoya dreamed that she was on her way back from a trip. Suddenly, she was told that no one would pick her up when she arrived at the station. She wandered helplessly around the station with her mother and a lot of luggage.

Lu Xiaoya's parents are Xinhua News Agency reporters abroad and work abroad all the year round. Lu Xiaoya left home at a very young age and was sent to her grandmother's house at the age of one. At the age of five, she began to attend kindergarten and primary school alone in Beijing. 15 years old, she went to the countryside to jump the queue and spent few days with her parents. Father died on 1987. She lamented the cruelty of fate: "A person who has not experienced much maternal love has to be a mother for his mother."

Mother gradually degenerated and even recognized her as a mother. She asked her mother, "Am I your mother?" "yes." "How did I do as a mother?" "Not bad." The old lady said.

The first domestic survey report on the family life of patients with Alzheimer's disease published in 2020 shows that 80% of caregivers have to take care of patients all the time, and 60% to 70% of caregivers' social life and sleep are affected. Most people are anxious to get rid of the current state and see no hope of treatment.

"Support and filial piety, once these big words fall into the details, will lead to countless conflicts and challenges, but in China, which pays attention to filial piety, they are rarely seen and recognized." Lu Xiaoya wrote.

After his mother was ill for thirteen years, Lu Xiaoya accompanied him. When she was really uncomfortable, she used writing to relieve her anxiety. "I turned my helplessness to fate into observation, awareness and introspection of life." One year after my mother's death, 202 1 published the book Being a Mother.

Kebowen, a famous psychiatrist at Harvard University, became one of more than 50 million family caregivers in the United States after his wife fell ill. He recorded his ten years with his wife and wrote: "Caring is actually the essence and core of all relationships in the world-caring for others and being cared for by others, which is like a process of exchanging life gifts."

On the day of being interviewed by Southern Weekend, 67-year-old Lu Xiaoya was wearing a thick green sweater and jade earrings were swinging gracefully. She just finished watching the movie Hi Mom. Unlike the sudden death of his mother in the movie, Lu Xiaoya saw her mother's soul gradually leave her body and experienced the "longest farewell".

But she envied Jia Ling. Speaking of the details of Li Huanying calling her daughter "Bao Er" and sewing trousers for her daughter, Lu Xiaoya suddenly choked up. "My mother has lived for a long time, but there are not many scenes that are particularly warm and can be recalled."

Where is your home? Walking on the road with my mother is like crossing time and space. When I was in Beijing, my mother would point to the buildings on the roadside and say, this is the liberated area and that is Paris. All the clothes in these years were bought by her children, but she insisted that they were bought in Paris.

My mother is always looking for something, and she fumbles in the closet when she has nothing to do. First, she hid her passbook, ID card and money. Later, when she really couldn't find it, she called Lu Xiaoya. Lu Xiaoya simply changed a handful of change, and his mother took a pile of money, thinking it was a lot of money, and hid it contentedly. Later, my mother began to hide shredded paper. As soon as she undressed in the shower, the paper fluttered like snowflakes.

My mother has been dealing with words all her life, but now she can't read books and newspapers. She has gradually lost her aphasia and can only mumble something that no one can understand. Some scholars use "spiritual barrenness" to describe the emptiness of cognitive patients. Filling mother's time has become an arduous task, and leisure will make her anxious. One winter, my mother refused to stay at home and took Lu Xiaoya out crazy. All the shops in the street are closed. After a long walk, I finally saw a KFC open, and my mother was willing to go back indoors.

Doctors say that socializing is the most effective way to prevent and treat cognitive impairment. Mother was never sociable. 1948, my mother met her first boyfriend in the liberated area, and later went south with the army, and the war broke out. It was not until after the Cultural Revolution that the two sides reconnected. The old man said to Lu Xiaoya, "Your mother will go abroad, go abroad, and then go abroad. I'll delegate, delegate, delegate."

When Lu Xiaoya offered to see this uncle, her mother couldn't communicate normally, and she didn't refuse. Lu Xiaoya took her mother by bus for a long time. When she got to the station, it was already dark and the street lamps were dim. The old man bent down to help them up, grabbed the old lady Lu, and they staggered together.

Mom doesn't cry or laugh, she doesn't talk much, she asks and answers, and there is no strong reaction. At that time, Lu Xiaoya was always eager to see the flow of emotion from his mother's face, but he was always disappointed. "I wish I had done it earlier." She lamented to the Southern Weekend reporter.

Gradually, my mother lost her understanding of many normal things. She forgot how to wash, eat and go to the toilet, and she looked at a loss. In order to teach her mother to go to the toilet, Lu Xiaoya moved a small chair and sat next to the toilet, making a "uh-huh" sound while demonstrating hard until her mother finished defecating.

When you get along with your mother, everything should be light and slow. Dress her softly and walk with her at the slowest pace. Even if you go to the toilet to flush, wait for her to leave, otherwise the roar of water will scare the old man.

Once my mother was ill, Lu Xiaoya and her sister coaxed her to the emergency room, dragging her along and hugging her. Take her temperature, do B-ultrasound, and every examination makes her very entangled. She refused to sit down, so the doctor had to stand for her auscultation. When it was time to draw blood, the sisters tried their best to make her sit still. As soon as the needle was pricked, my mother screamed, "Ah! You are going to kill me! "

Security guards and patients gathered around, thinking there was a medical trouble. Lu Xiaoya hugged his mother and kissed her, trying to appease her. A middle-aged man felt the same way and lamented that there were four old people to take care of at home. An old lady whispered "How nice" with tears in her eyes.

Lu Xiaoya tried to understand this fear and loneliness: "I think people might feel unsafe at that time. It is conceivable that every morning when she gets up, she is surrounded by strangers and she forgets her home. "

I don't know since when, my mother has been talking about going home. When I was not at home, I said I would go home. When I returned to the house where I had lived for more than 20 years, I still cried to go home. In the spring of 2009, on the occasion of her 80th birthday, Lu Xiaoya decided to take her back to her hometown in Changshu. In a few hours' journey, everything is a challenge, from getting up in the morning, going to the toilet on the way, checking tickets to the confined space on the train.

After tossing to my hometown, my mother still didn't respond, quietly looking at relatives and old friends, as if she were an outsider at home. Lu Xiaoya found that her hometown was still not the home she wanted to go back to. Lu Xiaoya found that in her mother's mind, she had no home.

After her mother became ill, she often regarded the streets of Beijing as Paris. (Photo courtesy of the interviewee/picture)

One day when the breathing time is 20 13, Lu Xiaoya originally planned to spend the whole day with her mother. Go to yuyuantan park with her in the morning and sit and chat with the nanny at home in the afternoon. Mother felt left out, became furious, and began to beat the door and bed to express her dissatisfaction. Lu Xiaoya suddenly has a strong impulse to escape, and she has been killing time here. She was distressed by her inability to read and write. The nanny advised her, "You have achieved a lot."

She is even more angry. For the sake of her mother, she had to give up her original way of life. "I'm not a saint. I can't stand this kind of trouble, pretending to be patient, talking about chickens and ducks, and endless companionship. " I want to study, I want to write, I want to prepare lessons, I want to have spiritual communication ... why should I sacrifice my creativity for a mentally poor person? "

There are countless accusations in Lu Xiaoya's mind-"She is a patient, you can't treat her as a normal person." "She is your mother. She gave birth to you and raised you. Now she is ill. You should put everything down to accompany her. " "How long can she live? You have a long day. What can't be put down? "

Lu Xiaoya recorded this "escape" experience in his book. In European and American countries, there is a "breathing service" for caregivers, and relevant institutions temporarily look after the elderly to give their families a chance to breathe.

Although it's not easy to stay with her mother, with the help of her younger brother, sister and nanny, Lu Xiaoya doesn't have to stay with her mother full-time. She envies those friends who choose full-time. A good friend gave up his job and small family to take care of his mother. Shortly after her mother left, she found cancer herself and died before she could do anything. Another friend took care of his father after retirement, from his eighties to now he is 97 years old.

Lu Xiaoya saw a son pushing his mother to wait for treatment in Union Medical College Hospital. The old man kept yelling at the children. This son is Lu Xiaoya's contemporaries, and his hair is gray. "Do you want to be a child easily in this process? It is easier said than done. " She regretted it.

The pain and suffering of caregivers are often underestimated. Many elderly people with cognitive impairment suffer from "sunset syndrome"-so does Lu Xiaoya's mother. Every time the sun goes down, she is in a bad mood and cries and scolds. One night, my mother started cursing "What the hell", and Lu Xiaoya cried sadly.

Lu Xiaoya tried his best to deal with emotions with professional psychological knowledge, but it was really difficult to calm down in the face of abuse. Once she simply asked angrily, "Do you want to leave us a bad face after you leave this world?" If you leave, we will think of this face when we think of our mother. Will you? "

Later, when mom loses control again, she will say, "vent if you want, but I don't want to be with you." Then go to the study for a while. Mom came in and spoke to her in a language she didn't understand. Lu Xiaoya listened attentively and made a gesture of understanding and repetition. Mother soon calmed down.

Mother has a strong personality. When she was still able to communicate, Lu Xiaoya wrote a long letter and wanted to talk to her.

"... but we almost never get your appreciation and affirmation. When the work is finished, we buy food, deliver food, take medicine, take a bath, buy clothes and walk with you. When you get angry, you scold us. It makes us sad that you scold us. "

"Please don't take our concern as a criticism of you, and then lose your temper with us!"

In the letter, Lu Xiaoya carefully took care of her mother's self-esteem, asked her to consider her children's feelings, and thanked her. When she got home, Lu Xiaoya saw the cut letter and put it by the bed, but her mother didn't say anything. A few days later, after giving her mother a bath, she got up the courage to ask, "Mom, did you read the letter I wrote?"

"Are you? Maybe I haven't received it yet. " The old lady is expressionless.

When Lu Xiaoya was 5 years old, she left home alone and went to Beijing to attend kindergarten, and spent a short time with her mother. (Photo courtesy of the interviewee/picture)

"I really don't know whether my mother loves me or not." Lu Xiaoya followed her mother's surname, and the first marriage law of New China was promulgated in the early 1950s, which set off a wave of crowned mother's surname. As the mother of a new woman, she asked her eldest daughter to take her surname.

Mrs. Lu was born in a Jiangnan family. She is the third daughter and the two sisters are twins. She always wears her sister's old clothes. When her sister made tea and did her homework, she had to help the kitchen. Her early family life was full of grievances, and she fled to the liberated areas early to participate in the revolution.

She gave birth to three children, but they were not close. In Lu Xiaoya's memory, her mother never praised her, hugged her or called her kindly. The three brothers and sisters whispered "Look at other people's mothers, look at our mothers" when they were young.

When she was young, Lu Xiaoya visited her relatives in Shanghai. Seeing her plain clothes, relatives gave her a delicate "dacron" shirt. As soon as she got home, her mother took it away.

"Others give good things to children, she didn't. At that time, the best fruit at home must be hers. " After studying psychology, Lu Xiaoya understood her mother's behavior. "Later, I thought that because she couldn't get good things when she was a child, she was deprived, so she finally had the power after marriage, and she had to make up for it herself."

Lu Xiaoya and his mother only got along for a few years during the Cultural Revolution. Looking back now, they didn't leave too many warm memories. Lu Xiaoya 15 years old went to the countryside to jump the queue, and even her menstruation was instructed by her father.

The day before she cut in line, my mother searched the wardrobe and found two shirts brought back from abroad. There is exquisite embroidery on the thin cotton cloth, but the cuffs and collar are broken. Lu Xiaoya turned his back on her and lay in bed mending his shirt. She heard her mother sobbing softly under the lamp.

This scene is very important to Lu Xiaoya's life and is considered as the only evidence that her mother loves her. "If not, I really don't know if my mother loves me."

In adolescence, Lu Xiaoya was a serious and well-behaved child. She once went to a friend's house to play. She wore a sky-blue skirt, and her friend said, I think you are so depressed. Another friend once euphemistically suggested that she had a personality problem because she didn't grow up with her mother.

At the end of 1990, the first thing Lu Xiaoya did after studying psychology was to deal with his mother. At that time, she was 45. She tried to express her inner hurt to her mother, but she didn't respond. She longed for her mother to express a little gentle apology, but she never did. Before she lost her mind, her mother was seldom gentle.

Compared with their peers, mothers live a smooth life, work outside all the year round to avoid the current turmoil, and their children are filial, which should be enviable. However, Lu Xiaoya observed that her mother's happiness was not high-she seldom laughed.

On the contrary, after illness, my mother changed her normal state and showed a gentle side. Lu Xiaoya took her for a walk. When she sees a child, she will greet her kindly. "Hello, baby!" After getting the response, I smiled into a flower on my face. Another time I saw a strange young man smoking on the roadside, and my mother went over and patted him on the head. "ah! Why! "

Once upon a time, when crossing the street, Lu Xiaoya tried to hold her hand, and her mother would shake her hand. Until she slowly degenerated, mother and daughter finally had close physical contact. Lu Xiaoya gave her a bath and wrapped her in a big towel like a baby. At home, when Lu Xiaoya goes to other rooms, she will follow her like a shadow. When she goes out for a walk, she will hold Lu Xiaoya's hand tightly until the ring on her daughter's hand is embedded in the meat, which hurts.

Lu Xiaoya said frankly that taking care of her mother was originally out of responsibility. "Our education is that at least we should do our duty, which is not a problem for me." But in the process of accompanying her, she gradually felt pity for her mother, bathing her, dressing her, feeding her and pulling her to walk. "The feelings slowly came out."

She sees this friendship as an opportunity to mend her childhood wounds. "Although she may not be able to give me what I desire, even if it means' I love you' or' thank you'. But I also think this process is very important to me. I won't feel happy if there is only resentment and injustice left in my heart. The hole in that heart will always exist. "

On one occasion, Lu Xiaoya took her mother downstairs for a walk. Several old people are dancing. They invited Mrs. Lu. Her unsociable mother walked into the crowd for the first time and circled. Everybody clap your hands. It was a sunny day, and every smile of my mother made Lu Xiaoya recover.

As a foreign correspondent of Xinhua News Agency, my mother works in Paris (photo courtesy of the interviewee)

"Mom, don't suddenly understand." Lu Xiaoya and his brothers and sisters hesitated for three years about the decision to send their mother to a nursing home. 20 15, my mother doesn't know them. She showed her around the nursing home several times. Before she left, Lu Xiaoya was still unable to speak, so she had to change her statement: "Mom, let's go to that beautiful place where you went last time. You were very happy there that day. "

Lu Xiaoya has seen the documentary "Forgotten Time" in Taiwan Province Province. Director Yang Lizhou went to the old-age care institution for an interview, and saw an old man in his fifties and sixties send his demented father in his eighties and nineties to the hospital. After being picked up by the nurse, his father suddenly woke up, struggled and shouted at his son, "What did I do wrong?" The son had to bring his father home in tears.

After entering the nursing home, my mother was not unhappy, but seemed a little happy because of the large number of people. Lu Xiaoya prayed in his heart, "Mom, don't suddenly understand that we abandoned you!" For the first two weeks, the three brothers and sisters took turns to accompany her until she fell asleep every night.

Lu Xiaoya has free time, often comes to nursing homes, and is familiar with many old people. The oldest centenarians always hold a doll, kiss it, wipe its face, talk to it, and sometimes put it in their arms to put it to sleep. Everyone fell asleep at night, and she happily asked Lu Xiaoya, "Where is my mother? When will my mother come? "

An old professor always sits at his desk alone, staring at the black bag on the desk, not talking or walking. Lu Xiaoya was shocked by this great loneliness and didn't dare to look at him. Once approached to chat with him, the old professor twitched his mouth, but he could not speak. He opened his schoolbag and took out what he had been carrying with him-a red certificate of honor and a postcard from Tsinghua University No.2 school gate.

Mother always lingers in the nursing home with trepidation. Lu Xiaoya wants to know the world in her mother's eyes. She imitated the angle of her mother's bow and found that she could only see a small area in front of her feet. If no one drags, mom will go straight to the corner and bump into it.

After a year in hospital, my mother won't look up. Whenever her neck hangs down, Lu Xiaoya buys her a baby saliva towel. Bowing her head for a long time made her right eyelid swollen, so everyone had to let her lie flat and try to lie flat. The two sisters kept massaging their mother to relax. "... let her feel that the person sitting next to her loves her little by little, and want her to feel that she is still loved. "She wrote.

When her mother was 89 years old, Lu Xiaoya, who was traveling abroad, received a phone call from a doctor in a nursing home. She flew back to Beijing immediately. Lu Xiaoya and her sister felt that the clothes in the shroud store didn't conform to their mother's temperament, so they had already prepared the dark green velvet cheongsam she had worn when working abroad, with satin shoes and silk scarves. When she died, her mother, who had been sleeping on her side for many years because of cervical curvature, finally lay flat.

After his mother's funeral, Lu Xiaoya bought a plane ticket and flew to the seaside alone, hoping that the vastness of the sea would hedge against the smallness and fragility of life. Her husband wants to be with her, and she insists on being alone. "I cried because a person wanted to cry. I don't have to explain it to anyone. "

35 accompanying notes, she cried and reread, and the sadness of her mother's death was even more turbulent than she thought. She found that her biggest regret was that she could not understand her mother's inner world and could not piece together the story of her life completely. If there is an opportunity, she wants to ask her mother if she regrets not doing her favorite job all her life because she gave birth to a child and her husband was transferred to Beijing to work. "If you can choose, would you like to have children?"

Lu Xiaoya told Southern Weekend that she was not afraid to hear the answer. "I have grown up and it is complicated enough to judge this problem simply."

A few days ago, Lu Xiaoya cleaned his computer and found a video file called "I love you forever". She opened it blankly and saw herself in the 20 14 video, holding the parent-child picture book "I love you forever" and reading it to her mother. She hugged her mother. "Mom, I love you. Do you love me? " Mother didn't answer.

Lu Xiaoya shed tears while watching.

Southern Weekend reporter Li