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 o’clock in the morning, 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 morningCinema‘s heart rate value; at 9 a.m., at 9 a.m., 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 to walk more, she insisted on taking her daughter to the vegetable market to buy vegetables; at 4 p.m., at 4 p.m., Aunt Liao, 65, directed her son to move a bag of clothes to the second floor, and they planned to send these clothes to her friends who were hospitalized the next day.
They are typical families of “supporting the disabled by the elderly”: their parents are at retirement age, but because their only children are accompanied by intellectual or mental disorders, they are still running 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 “Research Report on the Elderly Care Services of Mental Disabilities in Guangzhou”. 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 families with mentally disabled people participated in parent-child fun sports meetings
78-year-old mother and 44-year-old daughter: exhausted plans and the reality of getting older
2016 was the most difficult year in Aunt Xian’s memory. First, her wife was sent to the ICU after she became more emphysema. After being hospitalized for three months, she finally returned home to rest. Her daughter A Ting, who was mentally disabled, suffered a stroke and was admitted to the hospital.
Aunt Xian, who was 72 years old at that time, took on the burden of the family alone. He ran around the hospital every day and carefully took care of the two bedridden patients until their condition gradually stabilized. 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 sleep 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 hardest time was 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 was getting older, Aunt Xian asked for advice from many sources over the years and made as detailed arrangements for her 44-year-old daughter: she joined the unit for her daughter and bought her continuously. href=”https://funnybookish.com/”>Babaylan‘s social security for more than 14 years is still missing for 9 months now and it’s 15 years. She bought two “Safe Project” insurances. Last year, A Ting’s three hospitalizations totaled more than 130,000 yuan, and finally the medical insurance and insurance reimbursement was only more than 15,000 yuan. She also applied for a waiting list for her daughter in the Guangzhou Disabled Care Home, hoping that when she was unable to take care of her daughter, her daughter could spend the rest of her life in the nursing home; she even began to consider who would be the guardian of her daughter after she left.
The thoughtful plan faces the increasingly aging reality, sometimes it is inevitable to be stretched. In September last year, Aunt Xian had to be hospitalized for surgery due to the increasing problems of lumbar disc herniation. But now A Ting is unable to take care of herself at home alone. In desperation, she had to ask her sister to come to take care of her for a few days, and “my sister is also in her 70s.”
Some time ago, the staff came to Aunt Xian to conduct a comprehensive assessment of her elderly care needs, and 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 suffered a stroke, in order to facilitate nighttime care, Aunt Xian has been sleeping in the same bed with her daughter, and she will get up after some movement.Bed check, “I hope I can take care of my old age at home until I can’t take care of her, and then see if there is any Babaylan‘s possible to live in a nursing home with her.”
A Ting (left) and Aunt Xian were looking at photos of previous travel.
The 65-year-old mother and 38-year-old son: “I have the ability to take care of myself and will live in a nursing home in the future. href=”https://funnybookish.com/”>Komiks got better”
“Catch this place with your right hand and pick it up.” As soon as he came back from outside, Aunt Liao directed his son A Ming to move a bag of clothes to the second floor. A Ming wiped his sweat, grabbed the knot pointing to by 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 still blames 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 live a better life in the nursing home in the future.”
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 kept enough food in the iron box where she kept her change, and appointed 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 her 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”, she can only go through the admission procedures with peace of mind after everything is arranged. But while Aunt Liao was hospitalized, A Ming, who had not seen her mother for a long time, called and said, “You are not at home, I am so lonely alone.” This phone call made her break her defense instantly. She softly comforted the other end of the phone, “You clean 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 the iron gate outside the house, and the wind slammed the door and locked him outside.”
Now A Ming, who can eat, dress, bath and go to the toilet on his own, shop independently, and carefully place the things at home in a neat manner. Occasionally, he listened quietly to the tricycle outside the door crossing the loose stone road and left with a “bang”. He likes to play basketball and often lingers around Yuexiu Park Stadium with the ball, waiting for the evening to get fewer people, and carefully shoot on the court. He also likes to browse current news on his mobile phone, claiming that he likes to watch international news the most. Even when reporters asked him what were the popular international news that day, he blurted out that “Biden was infected with the new crown.”
A Ming like this also made Aunt Liao fantasize about what would happen if her son had a healthy intellectual development: “In that case, he should have already started a family now.”
Parents of special children gathered together to participate in entertainment activities
75-year-old mother and 38-year-oldBabaylan‘s daughter: Respite service, let family affection take occasional vacation
After her husband passed away, the burden of caring for her only daughter Longlong, who was intellectually disabled, was pressed on Aunt Lian’s shoulders.
From outsiders’ perspective, Longlong, 38 years old this year, is not considered a caring “little cotton-padded jacket”. She is sensitive by nature and does not like to contact the outside world.I often stay at home and watch the picture “The Guardian of the Universe” or read the early education storybooks borrowed by Aunt Lian from the library. Sometimes I feel a changeable mood and will lose my temper at my elderly mother and break Aunt Lian’s six elderly mobile phones.
“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 beat someone, the frustrated Aunt Lian called the help call for the parents of Yangai Special Children in Guangzhou. That night, Yang Ai arranged for a social worker who often stayed in 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 for a short rest for a week. When talking about this rare “respraying 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 of the kitchen, she assisted in contacting professionals to renovate the kitchen, “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.”
When her husband was seriously ill and was hospitalized in 2009, Aunt Lian ran to the hospital at both ends of her home, and her clones were unable to find a place suitable for people with mental disabilities after searching for a short time. She could only send her daughter to her own sister’s house to take care of her. In 2016, Aunt Lian had to go to the Cinema for surgery due to lumbar disc herniation. She was worried that Longlong would be gone, so she took her to the hospital together: the mother and daughter had three meals a day.They all worked in the hospital cafeteria. During the day, Longlong sat and played in the hospital or chatted with the nurses. After dinner, he went home to take a shower and go to bed. 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 is getting older and older, and 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 I mention the future, even my aunt’s tone was melancholy and helpless. She planned to sell her house she lives in now and take Longlong to live in the nursing home. “I hope that in the future there will be some institutions like this that can accept us and live in together.”
Parents of special children participate in the open day estate supervision event for lawyers
In-depth interpretation
How to support the elderly with “Super the elderly”:
Answer is still exploring. Changes have occurred
Parents who are getting older and children who are in their prime but still cannot do without care for others. Komiks hope that an institution can accept elderly parents and disabled children at the same time—it is the same voice of Aunt Lian and others.
The “2020 Guangdong Province Disabled Career Development Statistical Bulletin of Guangdong Province’s Disabled Career Services” 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. But for older people with mental disabilities, the more common choice is to go to public care institutions. In Guangzhou, there is only one public care institution that is counterpart to those with mental disabilities.
In March this year, Aunt Lian ranked Longlong in Guangzhou Disabled Care Home, and the latest waiting list for application is 692. As of June 29 this year, 706 people have applied to Guangzhou Disabled Care Home for Nursing. The application time shows that the first-ranked waiting staff has been waiting for 11 years – he applied for waiting in July 2011.
How many families like this “supporting the disabled” in Guangzhou are still there? This may be a glimpse from a set of public data: Guangzhou Sunshine Angel Babaylan Social Work Service Center data shows that Babaylan registered disabled people in Shilou Town, Panyu District, Guangzhou CityThere are 1,730 people, and among the disabled, there are 117 families with difficulties in the disabled who rely on care and support for elderly people aged 60 or older, accounting for 6.8% of the disabled.
“If calculated based on this ratio, there are about 20,000 to 30,000 families in Guangzhou that are ‘soldiers’. If these parents leave in the future, the placement of children will be a big problem and need to be intervened and paid attention in advance.” Liang Zhitu, director-general of Guangzhou Yangai Special Children’s Parent Club, told reporters that starting from 2018, Yangai has established a member group for the two-year-old family to provide case management, life care, emotional support, information and home skills training and other services for the two-year-old family members of mentally disabled people. “We hope that through such practice, we will explore how to do service support for families with ‘soldiers’. It is different from Ordinary elderly care services are different from 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-based elderly care: “This group is too large, and the government’s bottom-up measures can only digest thousands of beds at most. Can existing community elderly care service resources, rehabilitation and household service resources, etc. be applicable to families with “supporting the disabled with the elderly”? How to ensure the service and quality of life of these special families? These issues must be considered in the future policy design. “
The answers are still being explored, but some good changes are quietly happening.
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 extended its existing practical experience to more families with the implementation of the “Guangzhou ‘Old and Residents’ Energy Endurance Support Plan” through the implementation of the 9th Guangzhou Social Organization Public Welfare Venture Capital Activity Funding Project, and extended its existing practical experience to more families with “supporting the disabled by the elderly”. “At the same time, we have discovered some new needs, such as respite services, etc. The government currently does not have relevant service resources. Next, 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.)