Text/Yangcheng Evening News reporter Li Meiyan intern Guo Yixuan
Liwan District, at 6 am, 78-year-old Aunt Xian got up and made breakfast, turned around and walked into the room to wake her daughter to take medicine, and helped her record the heart rate in the morning; Haizhu District, at 9 am, 74-year-old Aunt Lian went up and down The four-story stairs are already a bit difficult, but in order to allow her daughter who is not very fond of going out to go out more, she insists on taking her daughter to the vegetable market to buy vegetables; in Yuexiu District, at 4 pm, 65-year-old Aunt Liao directed her son to carry a bag of clothes. On the second floor, they plan to deliver the clothes to friends who are hospitalized the next day.
They are a typical "old-aged and disabled" family: their parents have reached the retirement age, but because their only child is accompanied by intellectual disability or mental disability, they are still running around to support their disabled children, and it is difficult to enjoy their old age like their peers.
In December last year, the first social service organization in China to serve parents of special children - Guangzhou Yangai Special Children's Parents Club conducted a survey on nearly 600 ordinary elderly people and nearly 300 mentally handicapped "old and disabled" families in Guangzhou. , and released the "Research Report on the Demand for Elderly Care Services for Families with Mental Disabilities in Guangzhou", in which, when it comes to the difficulties and challenges of planning for their children's future placement, more than 60% of parents are most worried about the insecurity of their children's lives.
Parents who are getting older, and special children who are in their prime but cannot be taken care of, the anxiety of "retirement for the disabled" families is becoming a huge question mark, waiting for the society to straighten it out with practical actions.
78-year-old mother and 44-year-old daughter: exhausted plans and the reality of growing old
2016 was the hardest year in Aunt Xian’s memory—first, her wife was sent to the ICU with aggravated emphysema. After three months of hospitalization, she finally returned home to recuperate, and her daughter A Ting, who was accompanied by intellectual disability, suffered a stroke. into the hospital.
At that time, 72-year-old Aunt Xian took on the burden of the family by herself. Every day, she ran around the hospital and took care of the two bedridden patients until their condition gradually stabilized.
During that time, she lost ten pounds at once.
But the crisis has not really passed.
In August 2020, his wife who was bedridden for a long time passed away. In September, A Ting was admitted to the hospital because of edema of the whole body. The problem of bradycardia after a stroke became more and more serious. The lowest heart rate was only more than 20 beats per minute.
The doctor suggested to install a pacemaker for A Ting, otherwise "it may fall asleep and the person will be gone".
"It would be fine if she really fell asleep and walked away, but I'm afraid I'll be paralyzed and suffer more." Aunt Xian said that last year, A Ting was hospitalized three times, and for a period of time, she even had difficulty getting out of bed, so she had to take care of urine and urination on the bed.
In August last year, she made up her mind to install a pacemaker on Ating: "Now she is recovering well, but her right hand is not as flexible as before, and she can't hold things."
The hardest time was when I was in the hospital.
Aunt Xian, 78, has high blood pressure, diabetes, and heart disease. Her health is not as good as before. Once, A Ting was hospitalized for two weeks, and there was a vacant bed in the ward, so she pleaded with the doctor and moved in.
To this end, she kept thinking about the goodness of the hospital and the doctor: "I also have a heart disease, and I can't take care of myself when taking care of my daughter. The doctor let me and my daughter be hospitalized together, which saves the need for a nurse."
Considering that she is getting older, over the years, Aunt Xian has consulted in many ways and made as detailed an arrangement as possible for her 44-year-old daughter. It will be 15 years in a month; she bought two "Safety Project" insurances. Last year, the total cost of A-Ting's three hospitalizations was more than 130,000 yuan. In the end, the medical insurance and insurance reimbursed the out-of-pocket expenses for only more than 15,000 yuan; The Guangzhou Nursing Home for the Disabled applied for the waiting list, hoping that in the future when she is unable to take care of her daughter, her daughter can spend the rest of her life in the nursing home; she even began to think about who will be her daughter's guardian after she leaves.
Elaborate plans face the increasingly aging reality, and sometimes they are inevitably stretched.
In September last year, Aunt Xian had to be hospitalized for surgery due to the increasingly serious problem of lumbar disc herniation.
But now A Ting can't take care of herself at home alone. In desperation, she had to ask her sister to take care of her for a few days, and "my sister is also in her 70s."
Some time ago, the staff came to the door to conduct a comprehensive assessment of the elderly care needs of Aunt Xian. The assessment result was mild disability and secondary care.
"To take good care of her, I must ensure that I am healthy." Since A-Ting's stroke, in order to facilitate night care, Aunt Xian and her daughter have been sleeping in the same bed, and she has to get up to check if there is any movement, "I hope I can. Stay at home until I can't take care of her, and then see if it's possible to live with her in a nursing home."
65-year-old mother and 38-year-old son: "Having the ability to take care of themselves, will be better in the nursing home in the future"
"Grab this place with your right hand and pick it up." Just after returning from outside, Aunt Liao instructed her son A Ming to move a bag of clothes to the second floor.
A-Ming wiped his sweat, his right hand tightly grasped the knot pointed by his mother, and his left hand took advantage of the situation to take the bag into his arms.
This is the day-to-day life of the mother and son.
The 38-year-old A Ming was diagnosed with intellectual disability since he was a child, and it is difficult for him to complete slightly complicated tasks independently.
The 65-year-old Auntie Liao patiently disassembled each action step one by one and converted it into instructions that her son could understand and execute, so as to exercise his self-care ability.
"In 2007, the month I retired, he suddenly fell ill. After 10 years of adjustment, his condition was basically stable and controlled." Looking back now, Aunt Liao still blames herself. A Ming suffered from epilepsy at the age of 6, but he Due to the lack of understanding of this disease, the best time for effective control has been missed.
In 2007, A Ming's condition deteriorated sharply. The schizophrenia induced by epilepsy at the same time made him sleepless at night.
In those 10 years, she took her son to seek medical treatment everywhere: "In the beginning, the monthly pension was only 1,111 yuan, and he had to spend 600 to 700 yuan every month to take medicine."
She never avoided his illness in front of A-Ming, and even "injected" him from time to time, saying that "my mother will leave sooner or later".
In the race against time and disability, her desire to help her son achieve basic self-care has become more and more urgent: "If I leave, he will be able to take care of himself, and he will have a better life in the nursing home in the future."
At the beginning of this year, Aunt Liao had to be hospitalized for surgery due to thyroid problems. How to take care of A Ming's daily life became the biggest problem.
She left enough food expenses in the tin box where she put the change, and designated a snack shop near A-Ming's home to handle three meals a day, and asked the owner of the snack shop to help keep an eye on A-Ming's situation; at the same time, she entrusted a distant relative. She accompanies A-ming at home every night to prevent accidents such as "touching the switch with wet hands". After all arrangements are made, she can go through the admission procedures with peace of mind.
But while Aunt Liao was in hospital, A Ming, who had not seen her mother for a long time, called and said, "You are not at home, I am so lonely."
The phone call broke her defense instantly.
On the other end of the phone, she comforted her softly and said, "You clean up the house, and mom will come back." The obedient A-Ming focused on polishing the tables, chairs, benches, and corners in the house to a bright, shiny finish: "He wiped all the way to the iron gate outside the house. , and the wind slammed the door shut and locked him out."
Today's A-Ming can eat, dress, bathe and go to the toilet independently, shop independently, and carefully arrange the things in the house. Occasionally, he quietly listens to the tricycle outside the door passing over the loose stone road, all the way. go away.
He likes to play basketball. He often walks around the Yuexiu Park court with the ball. He waits for the court to gradually become less crowded in the evening, and then takes the shot carefully.
He also likes to browse current affairs news on his mobile phone, claiming that he likes watching international news the most, and even when a reporter asked him what was the most popular international news of the day, he blurted out that "Biden was infected with the new crown."
Such A Ming also made Aunt Liao imagine what it would be like if her son was mentally sound and developed: "In that case, he should have married by now."
Mother, 75, and daughter, 38: Respite service, family time off
After the death of her husband, the burden of caring for her only daughter, Long Long, who is mentally handicapped, rests on Aunt Lian's shoulders.
From an outsider's point of view, the 38-year-old Long Long is not a caring "padded jacket".
She is sensitive by nature and doesn't like to be in contact with the outside world. She often stays at home watching the cartoon "Guardians of the Universe" or flips through the early childhood storybooks that Aunt Lian borrowed from the library. In his temper, he also broke 6 old cell phones of Aunt Lian.
"Although I have raised her for more than 30 years, sometimes I don't know what she's thinking." Aunt Lian said that Longlong's temper comes and goes as fast as a child, and he can't predict it, "For example, when it comes to food. It's cold, and she's not happy when she is told to warm it up before eating. Sometimes she's taking medicine, and she's not happy when she tells her to pack her things in a while."
Mothers always embrace and understand their children with the greatest kindness.
From Aunt Lian's point of view, Longlong's language skills are poor. There are some things she knows but can't express, so she will be anxious. At this time, "don't confront her head-on, wait until she loses her temper before you can reason with her."
But the mother, who is overwhelmed by the double burden of life and psychology, also longs to be tolerated and understood.
One time, after Longlong lost his temper again and even hit someone, the frustrated Auntie Lian called the Guangzhou Yangai Special Children's Parents Club for help.
That night, Yang Ai arranged for a regular social worker to live in Longlong's house, temporarily taking over the care of Aunt Lian, allowing Aunt Lian to go to her sister's house for a short rest for a week.
Speaking of this rare "respite service", Aunt Lian is still full of gratitude: during that time, the social worker helped take care of Long Long, led her to learn how to buy vegetables and cook, study at the street medical station, and even after discovering the hidden safety hazards in the kitchen , through Yang Ai's assistance to contact professionals to remodel the kitchen, "When I see the kitchen now, I will think of that social worker."
Although she kept shouting, "I'll ignore you if you're angry again," but to Longlong, Aunt Lian always obeyed the softer side first: "What can I do, I can't let her go."
In 2009, when her husband was seriously ill and was hospitalized, Lianyi's hospital ran both ends of the house and was unable to do anything, but after searching around, he couldn't find a suitable place to temporarily care for the mentally handicapped.
In 2016, Aunt Lian had to be admitted to the hospital for surgery due to a herniated lumbar intervertebral disc. She was worried about Longlong, so she also took her to the hospital: the mother and daughter had three meals a day in the hospital cafeteria, and Longlong sat in the hospital during the day. Play or chat with the nurses, and go home to take a shower and sleep after dinner.
During the three months of going home and resting in bed after the operation, because it was inconvenient to buy food and cook for Long Long, Aunt Lian specially hired a nurse to help.
"She's getting older and older, I'm getting older, and our home is always a nursing home. When I'm still capable, I'll always let her live a warm life with a family." When referring to the future, Aunt Lian's tone There is both melancholy and helplessness. She plans to sell the house she lives in in the future and take Longlong to live in the nursing home. "I hope there will be some institutions like this that will accept the two of us together in the future."
In-depth interpretation
How to "reserve the disabled with old age":
Answers are still being explored, changes have occurred
Parents who are getting older, and children who are still in their prime but still cannot be taken care of by others, hope that there will be institutions that can accept both elderly parents and children with disabilities. This is the unanimous voice of Aunt Lian and others.
According to the 2020 Statistical Bulletin on the Development of Persons with Disabilities in Guangdong Province, as of the end of 2020, there were 1,774 nursing service institutions for the disabled in Guangdong Province, including 30 boarding and nursing service institutions, 1,695 day care institutions, and 1,695 comprehensive care institutions. There are 49 maintenance service institutions.
However, for older people with mental disabilities, the more common choice is to go to a public nursing institution. In Guangzhou, there is only one public nursing home for the mentally handicapped in Guangzhou.
In March of this year, Aunt Lian lined up for Long Long at the Guangzhou Nursing Home for the Disabled. The latest application waiting list is 692.
As of June 29 this year, 706 people have applied for foster care in Guangzhou Nursing Homes for the Disabled.
Application timelines show that the number one person on the waiting list has been waiting for 11 years - he applied in July 2011.
How many families are there in Guangzhou that "reserve the disabled with the elderly"?
This may be seen from a set of 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 City, and among the disabled people, there are people who depend on people aged 60 or above. There are 117 families with disabled persons who are cared for by the elderly in difficulty, accounting for 6.8% of the disabled persons.
"If it is calculated according to this ratio, there are about 20,000 to 30,000 families in Guangzhou 'reserving the disabled' for the elderly. In the future, these parents will leave, and the placement of the children will be a big problem, which requires early intervention and attention." Guangzhou Yang Ai Special Liang Zhitu, director-general of the Children's Parents Club, told reporters that since 2018, Yang Ai has provided services such as case management, life care, emotional support, information, and home skills training for the mentally handicapped dual-elderly family members through the establishment of a dual-elderly family member group. "We hope that through this practice, we can explore how to provide service support for 'old-aged and disabled' families, which is not only different from ordinary old-age care services, but also different from families with special children whose parents have not yet reached retirement age."
In Liang Zhitu's view, the key to truly solving these special family pension problems is to return to the community's home-based pension: "This group is too large, and the government's bottom-line measures can only absorb a few thousand beds at most. The existing community pension service resources, Can home-rehabilitation service resources and other resources be applied to 'old-aged and disabled' families? How to ensure the services and quality of life of these special families? Future policy design should consider these issues."
The answer is still being explored, but some good changes are quietly happening.
In June 2019, under the business guidance of the Guangzhou Yuexiu District Disabled Persons' Federation, the "Guangzhou Area Mental Disability Dual-Old Family Support Pilot Project" was officially launched, and gradually formed some routine and emergency response services, such as providing psychological counseling emotional Support and coordinate home-based elderly care personnel to take care of the mentally handicapped in a short-term to reduce the burden on the parents of the mentally handicapped, etc. At the same time, it is also gradually improving the service resource database and service support system.
Liang Zhitu found that among the more than 30 families where they now provide case management, parents never only asked the general question "What should I do after I leave?", but gradually learned to refine their specific needs, such as how to plan their property reasonably, and how to decide on guardianship. By doing so, you will have a clearer understanding of your child's future planning and placement.
It is reported that this year, Guangzhou Yangai Parents Club for Special Children passed the implementation of the 9th Guangzhou Social Organization Venture Philanthropy Funding Project "Guangzhou 'Elderly Retirement and Disabled' Family Empowerment Support Plan", extending the existing practical experience. Serving more "old-aged and disabled" families.
"At the same time, we also found some new needs, such as respite services, etc. The government does not have relevant service resources yet. Next, we plan to establish a temporary care point and explore related service models." Liang Zhitu said.
(At the request of the interviewee, A Ting, A Ming, and Long Long are all pseudonyms.)