Aging parents and special children who are in their prime but cannot do without care… “Supporting the disabled” families are looking forward to social assistance
Text/Yangcheng Evening News All-Media Reporter Li Meiyan Intern Guo Yixuan
Liwan District, at 6 am, 78-year-old Aunt Xian got up and prepared breakfast, turned around and walked into the room to wake up her daughter to take medicine, and helped her record the heart rate in the morning; Haizhu District, at 9 am, it was already a bit difficult for 74-year-old Aunt Lian to go up and down the four-story stairs, but in order to allow her daughter who doesn’t like to go out more, she insisted on taking her daughter to the vegetable market to buy vegetables; Yuexiu District, at 4 pm, Aunt Liao, 65-year-old, directed her son to move a bag of clothes to the second floor, and they planned to put this on the next day. href=”https://funnybookish.com/”>BabaylanSome clothes are sent to the hospitalized friends.
They are typical families of “supporting the disabled by the elderly”: their parents are at retirement age, but because their children are accompanied by intellectual or mental disorders, they have gray hair and still run around to support their disabled children, making it difficult to enjoy their old age as their peers.
In December last year, Guangzhou Yangai Special Children Parent Club, the first social service institution in China to serve parents of special children, conducted a survey on nearly 600 ordinary elderly people and nearly 300 “old and disabled” families in Guangzhou, and released the “Guangzhou City Mental Retardation Family Elderly Service Requirements Research Report”. When mentioning the difficulties and challenges of children’s future resettlement planning, more than 60% of parents are most worried that their children’s lives are not guaranteed.
The parents who are getting older and the special children who are in their prime but cannot do without care, the elderly care anxiety of families who “maintain the disabled” are tangled into a huge question mark, waiting for the society to straighten it with practical actions.
Two-year-old families with mentally disabled participate in parent-child fun sports meetings
78-year-old mother and 44-year-old daughter: the thoughtful plan and the increasingly aging reality
2016 was the most difficult year in Aunt Xian’s memory—first her husbandCinema Emphysema was sent in In the ICU, after three months of hospitalization, he finally returned home to rest, and his daughter A Ting, who was mentally disabled, suffered a stroke and was admitted to the hospital.
At that time, 72KomiksAunt Xian took on the burden of the family alone, and every day she was in the hospital.They ran around and took good care of the two bedridden patients until their condition gradually stabilized. Cinema During that time, she lost more than ten pounds at once.
But the crisis has not really passed. In August 2020, her husband, who had been bedridden for a long time, passed away. In September, A Ting was admitted to the hospital due to swelling throughout her body. The problem of bradycardia after the stroke became more and more serious. At the lowest point, her heart rate was only more than 20 times per minute. The doctor suggested installing a pacemaker for A Ting, otherwise “it is possible to fall asleep and the person will be gone.”
“It would be fine if I really fell asleep and left, but I was afraid of being paralyzed and even suffering.” Aunt Xian said that A Ting was hospitalized three times last year. For a period of time, she even had difficulty getting up and had to deal with urination and defecation in bed. In August last year, she made up her mind to install a pacemaker for A Ting: “I’m recovering well now, but my right hand is not as flexible as before and I can’t hold things.”
The most hard work is when I was in the hospital for a caregiver. Aunt Xian, 78, has hypertension, diabetes and heart disease, and her health is no longer as good as before. Once, A Ting was hospitalized for two weeks and happened to have an available bed in the ward, so she pleaded with the doctor and went in. For this reason, she has been thinking about the good things of the hospital and the doctor: “I also have a heart disease, and I can’t take care of myself even if I take care of my daughter. The doctor asked me and my daughter to be hospitalized together, which saved me from hiring a nursing staff.”
Considering that I am getting older, Aunt Xian has asked many questions over the years and made as meticulous arrangements for her 44-year-old daughter: She affiliated with her daughter to the unit of Cinema and bought social security for more than 14 years in a row. Now she has been missing for 9 months and now she has been 15 years in 9 months. She bought two “Safety Project” insurances. Last year, A Ting’s total hospitalization fee was more than 130,000 yuan. In the end, the medical insurance and insurance reimbursement was only more than 15,000 yuan. She also applied for a waiting time for her daughter in Guangzhou Disabled Care Home, hoping that when she was unable to take care of her daughter in the future, her daughter could be in the nursing home. href=”https://funnybookish.com/”>Babaylan spends the rest of her life; she even began to think about who will be her daughter’s guardian after she left.
The thoughtful plan faces the increasingly aging reality, sometimes it is inevitable to be stretched. In September last year, due to the increasing serious lumbar disc herniation problem, Aunt Xian had to be hospitalized for surgery. But now A Ting is unable to take care of herself at home alone. In desperation, she had to ask for helpMy sister came to take care of her for a few days, and “my sister is also in her 70s.”
Babaylan Some time ago, staff came to Aunt Xian to conduct a comprehensive assessment of her elderly care needs. The assessment results were mild disability and second-level care. “To take good care of her, I must ensure that I am healthy.” Since A Ting had a stroke, in order to facilitate nighttime care, Aunt Xian has been sleeping in the same bed with her daughter. She had to get up to check if there was any movement. “I hope I can stay at home until I can’t take care of her, and see if it’s possible to live in a nursing home with her.”
A Ting (left) and Aunt Xian were looking at photos of their previous trips.
The 65-year-old mother and 38-year-old son: “You have the ability to take care of yourself and you will live a better life in the nursing home in the future.” “Catch this place with your right hand and pick it up.” As soon as she came back from outside, Aunt Liao directed her son A Ming to move a bag of clothes to the second floor. A Ming wiped his sweat, tightly grasped the knot pointing to his mother with his right hand, and took the bag into his arms with his left hand. He looked focused, without saying a word, and obediently walked towards the stairs.
This is the daily life of the mother and son. 38-year-old A Ming was diagnosed with an intellectual disability since childhood and it was difficult to complete slightly complicated tasks independently. Aunt Liao, 65, patiently dismantled each move one by one and converted it into instructions that her son could understand and execute, so as to exercise his ability to take care of himself.
“In 2007, he suddenly fell ill, and after 10 years of adjustment, his condition was basically stable to control it.” Looking back now, Aunt Liao was very guilty of herself. A Ming suffered from epilepsy at the age of 6, but at that time, due to lack of understanding of this disease, he missed the best opportunity to effectively control it. In 2007, A Ming’s condition took a sharp turn for the worse. The schizophrenia caused by epilepsy made him unable to sleep at night. “Sometimes, he mumbled alone and spoke to the air.” In those 10 years, she took her son to seek medical treatment and medicine: “At the beginning, the monthly pension was only 1,111 yuan, and he had to spend six or seven hundred yuan a month just taking medicine.”
She never avoided his condition in front of A Ming, and even often “vaccinate” to him, saying, “My mother will leave sooner or later.” In the race against time and disability, her desire to help her son realize her basic self-care is becoming more and more urgent: “If I leave, he has the ability to take care of himself, and he will also live in a nursing home in the future.Better. “
At the beginning of this year, Aunt Liao had to be admitted to the hospital for thyroid problems, and how to take care of A Ming’s daily life became the biggest problem.
She left enough food in the iron box where she kept the change, and designated A Ming to solve three meals a day at a snack shop near her home, and asked the owner of the snack shop to help pay attention to A Ming’s situation; at the same time, she entrusted a distant relative to accompany A Ming at home every night to prevent accidents such as “touching the electric door with wet hands”. Only after everything was arranged was done, she could go through the admission procedures with peace of mind.
But while Aunt Liao was hospitalized, A Ming, who had not seen her mother for a long time, called her. href=”https://funnybookish.com/”>Babaylan said on the phone, “You are not at home, I am so lonely alone.” The phone call made her break her defense in an instant. She whispered to comfort her on the other end of the phone, “You clean up the house and your mother will come back.” The obedient A Ming focused on shiny tables, chairs, benches, and corners in the house: “He wiped all the way to the iron gate outside the house, but the wind blew the door slammed and locked him outside. ”
Komiks Ming, nowadays, can eat, dress, take shower and go to the toilet, shop independently, and carefully place the things at home neatly. Occasionally, listen quietly to the tricycle outside the door crossing the loose stone road, and go away with a “bang” all the way. He likes to play basketball, often linger near the Yuexiu Park Stadium with the ball, waiting for the stadium to gradually lose people in the evening, and carefully shoot on the court. He also likes to browse current news through his mobile phone, claiming that he likes to watch international news the most, and even asked him about the hot international news that day. When Komiks were there, he blurted out that “Biden was infected with the new crown.”
A Ming like this also made Aunt Liao imagine what would happen if her son had a sound intelligence development: “In that case, he should have already started a family now. ”
Parents of special children gather together to participate in entertainment activities
The 75-year-old mother and 38-year-old daughter: Respite service, let family affection take occasional vacation
After her husband passed away, the burden of caring for the only daughter of intellectual disability Longlong was all on Aunt Lian’s shoulders.
From the outsider’s perspective, Longlong, 38, is not considered a caring “little cotton jacket”. She is sensitive by nature and does not like to contact the outside world. She often stays at home to watch the cartoon “The Guard of the Universe” or reads the early education storybooks borrowed by Aunt Lian from the library. Sometimes she is emotionally changeable and will be anxious.The elderly mother got angry and broke the six elderly mobile phones of Aunt Lian.
“Although I have raised her for more than 30 years, sometimes I don’t know what she is thinking.” Aunt Lian said that Longlong’s temper comes and goes quickly like a child, and she can’t predict it. “For example, if the food is cold and she asks her to heat it up before eating, she will be unhappy. Sometimes she is taking medicine and telling her to pack up the things for a while, but she will be unhappy again.”
Mothers always use the greatest kindness to tolerate and understand the children. In Aunt Lian’s opinion, Longlong has poor language expression skills. She knows some things but cannot express them, so she will be anxious. At this time, “Don’t conflict with her head, and you can only reason with her after she gets angry.”
But the mother, who is overwhelmed by the double burden of life and psychology, also longs to be tolerated and understood. After Longlong lost his temper again and even started beating someone Komiks beat someone, the frustrated Aunt Lian called the Guangzhou Yangai Special Children Parent Club for help. That night, Yang Ai arranged for a social worker who often entered the household to move into Longlong’s house, and temporarily took over the care burden on Aunt Lian, so that Aunt Lian could go to her sister’s house to rest for a short week. When talking about this rare “respray service”, Aunt Lian is still full of gratitude: during that time, social workers helped take care of Longlong, led her to learn how to buy vegetables and cook, and study at the street medical station. After discovering the safety hazards in the kitchen, she even assisted in contacting professionals through Yangai to renovate the kitchen room. “I think of that social worker when I see the kitchen now.”
Although he kept shouting from time to time, “I will ignore you if I get angry”, when it comes to Longlong, Aunt Lian always surrenders: “What’s the solution? I can’t let her go.”
In 2009, BabaylanWhile her husband was seriously ill and hospitalized, Aunt Lian ran to her hospital at both ends of her home. Cinema was unable to find a place suitable for people with mental disabilities for a short period of time. She could only send her daughter to her own sister’s house to take care of her.
In 2016, Aunt Lian had to be admitted to the hospital for surgery due to lumbar disc herniation. She was worried that Longlong would take her to the hospital together: the mother and daughter had three meals a day in the hospital canteen. During the day, Longlong sat and played in the hospital or chatted with the nurses. After dinner, she went home to take a shower and sleep. During the three months after the operation, when I went home to bed and rest, because it was inconvenient to buy vegetables and cook for Longlong, Aunt Lian specially hired a nurse to help.
“She’s comingThe older I am, the older I am, the more I am, our destination is always a nursing home. When I still have the ability, I always want to let her live a warm life with a family. “When she mentioned the future, even her aunt had melancholy and helplessness in her tone. She planned to sell her house she lives in in the future and take Longlong to live in the nursing home. “I hope that there are some institutions like this that can accept us in the future. ”
Parents of special children participate in the theme activity of the lawyer’s open day heritage guardianship
In-depth interpretation
How to support the elderly with “oldering the disabled”:
The answer is still being explored. Changes have happened
Parents who are getting older, and children who are in their prime but still cannot live without care for others. I hope that an institution can accept elderly parents and disabled people at the same timeCinemaThe child with the disorder—is the unanimous voice of Aunt Lian and others.
《20Komiks20 Guangdong Province Disabled Career Development Statistical Bulletin of Guangdong Province” shows that as of the end of 2020, there were 1,774 disabled care service institutions in Guangdong Province, including 30 boarding care service institutions, 1,695 day care institutions, and 49 comprehensive care service institutions. However, for older mentally disabled people, the more common choice is to go to public care institutions. In Guangzhou, there is only one public care in Guangzhou disabled care hospital.
In March this year, Aunt Lian ranked Longlong in Guangzhou Disabled Care Home, and the latest application waiting time is href=”https://funnybookish.com/”>Komiks ranking is 692. As of June 29 this year, 706 people have applied to Guangzhou Disabled Care Home for Nursing Home. The application time shows that the first-ranked waiter has been waiting for 11 years – he applied for waiting in July 2011.
How many “old-to-rescue” families in Guangzhou? This may be a glimpse of the public data: data from the Guangzhou Sunshine Angel Social Work Service Center shows that there are 1,730 registered disabled people in Shilou Town, Panyu District, Guangzhou, and among the disabled, there are 11 disabled families with difficulties who rely on elderly people aged 60 or above to take care of and provide care for 11 disabled families with difficulties who rely on elderly people aged 60 or above to provide care and support. Among the disabled, there are 60-year-olds or older.7 households account for 6.8% of the disabled. “If we calculate based on the ratio of Komiks, there are about 20,000 to 30,000 families in Guangzhou that are “to support the disabled with the elderly”. In the future, these parents will leave Cinema. The placement of children will be a big problem and need to be intervened and paid attention in advance.” Guangzhou Yangai Special Children href=”https://funnybookish.com/”>Cinema Director-General of the Child Parents Club Liang Zhitu told reporters that since 2018, Yang Ai has established a member group for the two-year-old family to provide case management, life care, emotional support, information, home skills training and other services to the two-year-old family members of mentally disabled people. “We hope that through such practice, we will explore how service support should be done for families with ‘old-bearing disabled’. It is different from ordinary elderly care services and special children’s families whose parents are not yet retired.”
In Liang Zhitu’s view, the key to truly solving these special family elderly care problems is to return to the community’s home elderly care: “This group is too large, and the government’s bottom-up measures can only digest thousands of beds at most, and the existing community elderly care services<a Can CinemaFunnybookish.com/”>CinemaFunnybookish.com/”>CinemaFunnybookish service resources, rehabilitation and household service resources, etc. be applicable to families with ‘soldiers and disabled’? How to ensure the service and quality of life of these special families? These issues must be considered in the future policy design. ”
The answer is still being explored, but some good changes are happening quietly.
In June 2019, under the business guidance of the Yuexiu District Disabled Persons’ Federation of Guangzhou City, the “Guangzhou District Mental Disabled Family Support Pilot Project” was officially launched, and some regular and emergency response services have been gradually formed, such as providing psychological counseling and emotional support, coordinating home-based elderly care personnel to take care of mentally disabled people in the short term to reduce the burden on parents of mentally disabled people, etc. At the same time, it is also gradually improving the service resource library and service support system. Liang Zhitu found that among the more than 30 families they provide case management, parents have gradually learned to refine specific needs, such as how to reasonably plan property and how to do custody, etc., and have a clearer understanding of children’s future planning and resettlement.
It is reported that Guangzhou Yangai Special Children Parent Club has implemented the “Guangzhou ‘Old and Disabled Family Energy Enhancement Support Plan” through the implementation of the 9th Guangzhou Social Organization Public Welfare Venture Capital Activity Funding Project, extending existing practical experience to more “old and disable” families. “At the same time, we have also discovered some new needs, such as respite services, and the government currently does not have relevant service resources. In the next step, we are preparing to establish a temporary care.Explore related service models. “Liang Zhitu said.
(At the request of the interviewees, A Ting, A Ming and Long Long are all pseudonyms.)