Changsha Furong North Road, all the way to the north.
One nursing home has a pair of special guests , a 65-year-old father, Chen Liberty, and a 35-year-old daughter, Chen Siyu , who live in two adjacent rooms.
Chen Washigh was afraid to mention the past. Whenever someone asks why his young daughter is admitted to a nursing home, this old father who "has tears but does not flick" can't help but cry.
Because, daughter Chen Siyu suffers from hereditary cerebellar ataxia, which is often referred to as cerebellar atrophy. The disease is currently incurable and hereditary.
In 2009, Chen Free's wife had just died of the disease, and her daughter had signs of illness. He knew that the disease was an "incurable disease" and that, not surprisingly, his daughter would suffer the same fate as her mother.
Suffering from no one to take care of him, Chen Free can only live in a nursing home with his daughter, spending 5,000 yuan per month, while his retirement salary is only about 4,000 yuan, which has to buy medicine for himself and his daughter and use it for life.
"You see my name is Freedom, am I free?" Chen Free is helpless, and now he and his daughter are trapped in this small nursing home, as if waiting for the judgment of fate.
Chen Free's life was like a building, experiencing two "big earthquakes" and almost collapsing to nothing.
When her daughter was 4 years old, Chen Free's wife suddenly walked unsteadily and had weak limbs, went to the hospital for examination, and was diagnosed with cerebellar atrophy. Since then, his wife has been paralyzed in bed and needs to be taken care of, and his daughter is still young and needs to be raised, and he has taken on the burden of family life.
(Group photo of Chen Siyu and his mother)
Chen Free never thought about divorce, "At that time, I thought, even if she can't move, I will take care of her for a lifetime."
At that time, he was a cadre of the government of Wenxing Town, Xiangyin County, Yueyang City, working while taking care of his family. Ten years of perseverance made him win the honorary title of the first moral model in Yueyang City, and was also awarded the "Top Ten Men of the Era" in Hunan Province that year.
Before his wife fell ill, Chen Free had never heard of this disease. Later, he flipped through the data and learned from a magazine that cerebellar atrophy is a genetic disease, fortunately it is "heterosexual inheritance", and his daughter has only a very small probability of inheriting it.
In the difficult years, her daughter was obedient and well-behaved and had excellent grades, which was Chen Free's greatest comfort and brightest hope.
(Before Chen Siyu fell ill)
Chen Siyu has been "someone else's child" since he was a child. She ranked among the best from elementary school to university, and at the age of 17, she attended Guangxi Normal University and chose to major in history. After graduation, she was sent to her major to continue her postgraduate studies.
During his time at the school, Chen Siyu achieved excellent results, won the first prize in the National English Competition, and also participated in archaeological work. She is well-written, not only writing commentaries for school documentaries, but also publishing articles on "Dream of the Red Chamber" in the journal.
Chen Siyu understood that the family's income was not high, and he hardly asked Chen Free to live on living expenses, and lived on work-study and scholarships.
Before graduating from graduate school, Chen Siyu and her boyfriend agreed to take the doctoral examination at Fudan University together, and successfully passed the written test, but unfortunately failed in the interview.
Chen freely speculated that perhaps his daughter's illness had affected her performance.
(Chen Siyu after illness)
When his wife died in 2009 and Chen Siyu rushed home, Chen Free found that his daughter would stumble or even wrestle on the slope in front of her house. When keeping filial piety in the spiritual hall, the daughter also needs two people to support her to kneel.
But both father and daughter were silent about "cerebellar atrophy", and Chen Siyu continued to return to graduate school.
Although the doctoral interview failed, Chen Siyu was admitted to the civil service and was admitted to the Xiangyin County Tourism Bureau. At the Tourist Office, she had the privilege of continuing her work in history. At the 200th anniversary of Zuo Zongtang's birth in Xiangyin County that year, Chen Siyu was responsible for translating relevant historical classics.
(Chen Free taking care of his daughter)
The good times did not last long, Chen Siyu gradually could not walk, could not eat. Just five months after working, the leader came to the door and said to Chen Free: "Your daughter is smart and talented, but now her health is important, or take her to the hospital first." ”
The father and daughter traveled to Changsha and Wuhan to seek medical treatment, but they did not get a good answer, and Chen freely decided to take his daughter to Beijing.
He knew that the disease was an "incurable disease", and although he said that he did not hold out any hope, he hoped that a medical miracle would happen in his heart; and that "going to Beijing to see" was his daughter's wish, and he wanted to help her realize this wish.
"It's too late to take her with you." Chen said freely.
When they arrived in Beijing, they hung up an expert number of more than 400 yuan and waited for a long time, and as a result, the doctor gave her an "ultimatum" when he saw Chen Siyu's symptoms: "This disease cannot be treated." Chen Siyu cried on the spot.
"She feels like her life is over." Chen Free sighed.
(Chen Free and his daughter in Beijing)
With her daughter's consent, Chen Free admitted to her boyfriend on QQ that cerebellar atrophy was complicated, "I don't want to hurt him, let him not associate with my daughter." Later, Chen Free learned that the boy entered the Chinese Academy of Sciences after graduating with a doctorate from Fudan University. Occasionally he would fantasize about the beautiful life that should have belonged to his daughter.
After returning home, Chen Free took good care of his daughter as he had taken care of his wife before.
Before going to work, he scrubbed his daughter and put it in the quilt, pressing the four corners of the quilt. At noon, ask the neighbors to bring her food, or bring food back to feed her.
Her daughter often had to go to the toilet at night, and When Chen Free heard a noise, she would get up and move her to the wheelchair and then push her to the toilet. Both father and daughter did not sleep well, and often took sleeping pills to fall asleep.
When she was treated in Changsha, many classmates came to visit Chen Siyu and celebrate her birthday. But as her health deteriorated, she voluntarily refused a visit from her classmates.
(Chen Siyu in a nursing home)
Chen Siyu's condition is deteriorating step by step.
The first is athleticism. At first she just couldn't walk, and then she had difficulty even raising her hand, and she couldn't read her favorite books anymore, and she had to sit in a wheelchair or lie in bed all day.
Further degraded is language ability.
Chen Free found that her daughter gradually began to be unable to utter a complete sentence, and could only jump word by word. In 2020, Chen Siyu almost lost his language ability and could only speak out "Mmmmmmm
After difficulty speaking, the father and daughter switched to typing and communicating on their mobile phones. Chen Siyu will write a "0" to mean "I", and he will name the dish what he wants to eat. Cerebellar atrophy made her limbs weak, and she could write less than one word. Usually Chen Siyu will use his mobile phone to express some needs, and the communication between father and daughter is limited to this.
(After having difficulty speaking, the father and daughter switched to texting and communicating on mobile phones)
Only one exchange impressed Chen Free. On the night of his birthday, the daughter edited a large paragraph with her mobile phone, in addition to blessings, she also hoped that he would pay attention to his body, check early, and promised that he would obey, and if possible in the future, he would return to his father ten times and a hundred times.
Perhaps seeing his father's sad face all day, Chen Siyu wrote at the end: "With my lifelong obsession, I sincerely pray that you can be happy in your heart, and your body will become stronger and stronger day by day." ”
Chen Free put this passage into his favorites and took it out from time to time to see.
(Chen Siyu sent to his father's WeChat)
In 2016, Chen Free retired and took care of his daughter at home. But within two years, he suddenly suffered a stroke, and could only spend 4,000 yuan a month to ask a nanny to take care of him, and at that time, his retirement salary was only more than 3,000 yuan, and he could only look around for relatives to borrow money.
Or it was too hard to take care of two patients, and the nanny quit after only a year. In desperation, Chen Free took his daughter into the nursing home together.
The head of the nursing home sympathized with their father and daughter and let Chen free and his daughter live in two adjacent rooms.
Usually, the two caregivers take turns to take care of Chen Siyu's diet and living, and Chen Free wants to visit his daughter, but can only drag the right half of the stroke to the right side of the body and move over.
(Chen Free and his daughter live in two adjacent rooms)
Recently, Chen Free has gone to his daughter's room less and less frequently.
First, he himself suffered from multiple diseases, and after the stroke, he suffered from high blood lipids and diabetes, and the doctor suggested that he rest more. And whenever he went to visit his daughter, he would recall the past and couldn't help but feel depressed, "She should have been a knowledgeable and cultured person, but now she can't say it with a stomach full of words, how painful it should be!" ”
The second is that he is afraid of not handling the relationship with the nurse. "If I always pass, I'm afraid they'll feel like I'm not at ease with their care."
(Chen Free injects himself with insulin)
Since last year, Chen Siyu's hand can't even press the mobile phone, and the father and daughter have lost the last way of communicating - Chen Siyu sits in front of the TV all day, his eyes sluggish.
Chen Free can only support and care for his daughter in his own way. He knew that his daughter loved to eat refreshing meals, so he placed an order online, asked someone to help get it back from the group purchase point, and then let the nurse make a separate one.
Some time ago, his daughter's toilet was broken, and he cobbled together more than 300 yuan to buy a new one.
He knows that there is no cure for his daughter's illness, but he fantasizes about a miracle, and when he sees a "medicine" on TV that can "activate brain cells", he entrusts someone to take out the only money left in the bank card to buy it, hoping to alleviate his daughter's condition.
Before, when she was at home, my daughter spent most of her time in a wheelchair, which was more comfortable. In nursing homes, for convenience, daughters are often placed on toilets by caregivers.
Afraid that her daughter would sit for too long and feel uncomfortable, Chen Free did not dare to complain in person.
He often sat at the door of the room, looking at the old people in the courtyard who were much older than himself, and his heart was even more sad.
(Chen Free sitting alone in the doorway)
For the 65-year-old Chen Free, living in a nursing home at this age may not be the life plan he once had, and when he lived in a nursing home, he also brought his 35-year-old daughter who could not take care of himself due to illness, which was even more unexpected.
Years ago, Chen Free had imagined a life after retirement, maybe traveling everywhere, and if he had grandchildren, he would also help his daughter take care of her baby.
But these visions have become dream bubbles.
Now he thought that if one day, his daughter could not escape the same fate as his wife, and walked ahead of him, he would immediately move out of the nursing home and live the rest of his life.
But as long as he still has a breath, he will guard his daughter.
Source: Tencent Medical Code