According to statistics, China’s per capita Life expectancy will increase to 77.3 years in 2020 and will increase by another year during the 14th Five-Year Plan. By 2025, China’s elderly population aged 60 and above will exceed 300 million, and centenarians will no longer be a rarity. But with the advent of an aging society, old age, especially for the disabled, has become a heavy burden on more and more Chinese families.
The sudden arrival of old age
In Beijing, his 95-year-old daughter suddenly screamed in the bathroom. Li Jian rushed over to see. It turned out that his daughter had found a black ball on the bathroom floor and thought it was garbage, so she picked it up without thinking, but she immediately realized that it was her grandmother’s dried-up stool pellets.
Li Jian was born in 1964 and is 57 years old. His mother, 85, was diagnosed with moderate Alzheimer’s disease last year. Since 2021, Li Jian has noticed that his mother is losing control of her body. Although already living in the house closest to the bathroom, her urine and even stool would leak out on the way up to go. Her mother refused to wear adult diapers.
Jian Li and his sister took turns taking their mother into their Home each week for care. When it was his turn, Jian Li would immediately perk up his ears when his mother got up from bed or put on her slippers and walked out of the room, and his heart would always be on edge no matter what he was doing.
When his mother sat on the toilet, Li Jian had to listen for the normal sound of excretion. When his mother finished using the toilet, he had to check immediately in case what happened to his daughter happened again. Since his mother has been living at home regularly, Jian Li has become the emotional balance of his Family, suffering from internal and external torment.
Nurses and caregivers support an elderly person with mobility problems Photo: IC photo
Qiao Xiaochun, a professor at Peking University’s Institute of Demographic Research, said, “The number of such families with living Parents will increase after children retire, and it will grow exponentially.” China experienced two population peaks in births between 1949 and 1958 and between 1962 and 1971. “The people born in the first peak are basically retired. Now the people born in the second peak, that is, after 1962, will soon enter retirement as well, and there will be more people than in the previous peak.”
At the same Time, cognitive disorders, including Alzheimer’s disease, are becoming more prevalent with aging. “The growth rate of the older population diagnosed with Alzheimer’s disease, even higher than its own growth rate, will explode.” Qiao Xiaochun said.
Wang Chino, a project manager at the Fosu Kang Group of Companies, who has been in the senior care field for many years, told reporters, “Compared to disability, seniors with dementia can have a more devastating impact on a family.” Among the elderly, the loss of self-care and mobility (dysfunction) is often intertwined with cognitive deterioration and even loss (dementia).
Elderly people who are incapacitated and bedridden for long periods of time are at high risk of eventually developing dementia. Elderly people with Alzheimer’s disease may also experience loss of self-care, severe decline in body functions, and incontinence when their disease progresses to severe levels.
Elderly people in need of care Photo source: Interviewee’s photo
Minister of Civil Affairs Li Jiheng said at the 2020 National Civil Affairs Work Conference that China’s elderly population aged 60 and above would reach 254 million by the end of 2019. In the 14th Five-Year Plan period, China will enter a moderately aging society. By 2025, the number of elderly people aged 60 and above will exceed 300 million, and the task of coping with population aging will be the heaviest.
Elderly care has always been a topic of great concern. In this year’s government work report, the 14th Five-Year Plan mentions “comprehensively promote the construction of a healthy China, and raise life expectancy per capita by one year”, and in the key work for 2021, it is mentioned that In the key work for 2021, it is mentioned that “we will promote the integration of medical care and health care, and steadily promote the pilot of long-term care insurance system”.
In 2020, the number of cities approved for piloting long-term care insurance in China has expanded from 15 to 49. The intention of the expansion of the pilot is interpreted as the state is exploring the establishment of independent insurance to focus on the long-term care protection of the severely disabled.
Qiao Xiaochun told reporters that the solution to the problem of old age depends on the organic division of labor and connection between the three systems of old-age insurance, long-term care insurance and medical insurance. “The core of old age is care, so the establishment of long-term care insurance is the way to go. At least from the perspective of public services, this road does not go, the problem of old age can not be solved.”
The long-term care insurance pilot is currently only available in a limited number of cities. But the weight of family caregiving is already real in many Chinese families. In Beijing, for example, only Shijingshan District is currently included in the long-term care insurance pilot. But Li Jian’s family is not yet included.
“Going to work” at his parents’ home
In 2019, his mother’s fracture became the first domino in a series of subsequent chain reactions in Li Jian’s family. During her three-week stay in the hospital, Li Jian sensed that something was wrong with her mother. She asked her caregiver’s name over and over again, even though it might have been shortly after. At one point, she even asked Jian Li who her daughter-in-law was who had come to visit her.
Affected by the Epidemic, Jian Li’s mother was not diagnosed with Alzheimer’s disease in the hospital until mid-2020. The disease process was moderate. Doctors told him that his mother had three to five years before she was completely disabled.
By then, Ken Lee had more than two years before retirement and had already made plans. “I was on a quest of my own,” he says. He said.
As originally planned, Li Jian would continue to work until retirement. After retirement, he would join full-time in the charity he had been involved with for years, planning new activities, training new volunteers, meeting new people and helping more people.
But in order to take care of his mother, Ken Lee applied for a transfer away from the front line this year. This allows him to spend his time on his own when he has no special arrangements. Now, Ken Li works every other week because he can no longer leave his mother’s side.
In-home care services
Source: Photo by interviewee
Jian Li’s mother originally lived with his sister, but after she became ill, the siblings agreed to take turns bringing her into their home every week to care for her. “It’s too much of a challenge to care for one person.”
When his mother was first discharged from the hospital, Li Jian was close to collapse. At that time, he had not applied for a transfer away from the front line. His mother lived in the room closest to the bathroom in his house, but the room was too small to accommodate him as well. In order to hear his mother’s movements, Li Jian moved his bed to the living room couch that was only a wall away from her room.
At night, his mother got up frequently. When the old man got up, the bed made a rubbing sound, followed by the dull sound of slippers. Li Jian listened exceptionally carefully each time, he had to be alert to his mother falling again.
When his mother sits smoothly on the toilet, Li Jian still has to hold his breath and listen. Most of the time in the dark, he can only hear a few drops of water falling. “Just a tiny bit.” Li Jian pinched the tip of his little finger and described it to the reporter. This process is repeated seven or eight times in a night. In the daytime, Li Jian has to be strong to deal with the work of the unit.
“Physically is one aspect, the biggest or psychological, because I do not know when to be a head. At that time, I did not apply for the second line, I did not know what to do.” Jian Li recalls.
Lu Xiaoya and Li Jian are friends with similar experiences. Lu, 68, was also two years away from retirement when her mother was diagnosed with Alzheimer’s disease, after which she and her younger siblings cared for her mother for 13 years. She has offered death Education courses at Beijing Normal University and other universities, which have been well received by students and the industry. In 2021, Lu published a collection of her journals about caring for her mother in a new book, “For Moms as Moms”.
A young Lu Xiaoya with her young mother
Source: Photo by interviewee
Lu Xiaoya sums up the act of children taking care of their parents in their homes full-time after retirement as “going to work” at their parents’ homes. This phenomenon has become very common.
“My father-in-law went there at 96; my next-door neighbor went there at 102; a friend of mine has a father of 100 and a mother of more than 90. This means that children may take care of them not for 10 years, but for 20 or even 30 years. For example, if you are 70 years old, your father is 100 years old. That’s 30 years, as long as a career.” Lu says.
Lu’s 64-year-old brother, her father-in-law is 97 and her mother-in-law is 95, and her children and grandchildren are abroad. Lu’s husband is the same age as she is. While she was caring for her mother, Lu’s husband also cared for his father until the old man passed away.
More than one of her close friends moved in with her parents directly after retirement to make it easier to care for them. But in the end, physical and mental exhaustion took precedence over her parents.
It wasn’t until the last few years of her mother’s life that Lu and her younger siblings sent her to a private nursing home. There, Lu met more people with similar experiences to her own. Because of physical exhaustion, some elderly people in their 70s sent their parents, who were in their 90s or even over 100 years old, there and then visited the home regularly.
An 89-year-old mother and her 62-year-old son
Photo source: IC photo
Before their children took over, many elderly people were first cared for by their partners. Li Ran, who lives in a county in Guangyuan, Sichuan province, told reporters that his grandfather is 80 years old and his grandmother is 79, both bedridden. Before his grandmother collapsed, she had been taking care of his grandfather, who had suffered a stroke and was gradually losing his mental capacity, for more than a decade.
Until November 2020, Li Ran’s grandmother suffered a cerebral hemorrhage. After being discharged from the hospital, she also lost her self-care and cognitive abilities. Li Ran believes that the years of caregiving drained her grandmother’s physical and mental strength.
“If there is no external assistance, and we only rely on our equally elderly partners to take care of each other, we will either end up with our partners physically collapsing as well or mentally overwhelmed.” Wangchino said.
“I don’t have me anymore.”
Li Jian lives with a huge struggle.
His father died at a young age, and he and his sister were raised by their mother alone. “Deep down inside, it would be like, when she needs us, how come we can’t do it?” Ken Lee feels a real responsibility and obligation to take care of his mother. It’s a universal tradition.
More than 90 percent of the country’s elderly currently live at home, says Qiao Xiaochun, a professor at Peking University’s Population Research Institute. “Whether it’s from the concept or the actual situation, children or the elderly themselves, home is now the most dominant way.” And in this scenario, children have become the number one source of senior care for the elderly.
According to Wang Chino, the project manager of FSH Kang, among the clients served by FSH Kang and the research conducted, most of the disabled elderly group in their 80s and 90s rely on the care of their partners or children. When the elderly have more than one child, they usually take turns to take care of each other. Fewer than 30% of the elderly are willing to hire specialized caregivers at their own expense or by their children.
When Jian Li was a child, families generally had more than one child, and almost all of his parents’ care was at home. Li Jian’s grandparents were cared for by his uncles and aunts. “In those days, 80 years old was a very high life expectancy. My grandparents died one after another, not disabled or dementia. My aunts and uncles were about the same age as I am now.”
My mother would eventually be sent to a nursing home. This was actually a consensus between Li Jian and his sister. However, in addition to himself, there is also the 70-year-old sister of his mother. The Perception that sending a parent to a nursing home is tantamount to unfiliality is still widespread.
Nursing home caregivers helping the elderly eat
Source: IC photo
In the Spring Festival of 2021, my mother’s sister came to visit Li Jian’s home. “When she came to see my mother, she said, ‘Look how well my sister is being taken care of by you, or how well her own children are taking care of her, I tell everyone that my nephew is doing well.’ In effect she’s telling you that you need to keep going.”
Mothers who have Alzheimer’s disease no longer have the concept of privacy or shame. Bathing her mother, washing underwear and sheets with feces and urine on them, all of this was challenging for Ken Lee in the beginning.
And facing his mother’s body again. Ken Lee bathed his mother twice a week. “Maybe two or three years old or more before that, you’ve seen it. After that you don’t actually know anymore. How big is that challenge when you see it again, you know?”
Aside from the inconvenience caused by the gender difference, what really tormented Ken Lee was facing his mother’s aging. “That inner torment. You think, “How could she be like this? It’s like all of a sudden, she’s not the same mom you remember.”
What also keeps Li Jian trapped is the atmosphere at home. In Li Jian’s mind, he, as a son, is supposed to be the first person responsible for taking care of his mother and cannot ask his wife and daughter to do so.
“When dealing with some situations, I actually feel inside more or less, do not affect them. I have such concerns. The house wasn’t that big, and the poop got everywhere and anyone could smell it. So I have to take into account their emotions. This time my feelings are more complicated.” Li Jian said.
Compared to the various conditions triggered by the mother, the fear of affecting the family emotions, such pressure is more subtle and difficult to say, but may be more heavy. “There were actually times when I was especially happy to be home by myself.” During the epidemic, her daughter, a graduate student, was unable to return to school and was home for online classes. Sometimes it happened to coincide with an episode of her mother’s condition, such as sudden shouting. “You say let her understand Grandma? She’s there in class. So there are times when I especially wish I was home by myself, it might be more relaxing.”
Ken Lee says, “The caretaker mom chains me there, and I don’t have me anymore.”
nowhere else to go
Taking turns caring for his mother for a week with his sister was, in Li Jian’s view, a relief and release for himself. In Beijing, Li Jian inquired about public nursing homes with professional services and moderate prices, and the queue took two or three years. In order to find a suitable professional nursing home for his mother, Li Jian visited several, including the one where Lu Xiaoya’s mother lived.
But the situation could not satisfy Li Jian. On the one hand, it was because of the low level of hardware and software. The main function of several community care centers near his home is to provide only basic care services, and the functional partitions are relatively small. What concerns him more is that the staff in the centers, who do not have professional medical background, are mainly middle-aged and elderly people from rural areas, without professional training and accumulation.
A significant portion of the caregivers in the city are from the rural middle-aged and elderly population. They “work for their old age” and rely on urban jobs to save for their old age. One woman who left rural Heilongjiang and has been working outside for 10 years told the reporter that she came out to work to save money for her old age. “Ten years ago, I saw what happened to the old people in my village – I asked my children for money, and it was too difficult to live and see a doctor. So I still have to come out and earn money myself.” At present, the monthly pension for people aged 60 in rural areas in China is only 100 yuan.
The community care center that Jian Li looked at also costs $6,000 to $7,000 per month. The private nursing home that Lu Xiaoya recommended to Jian Li that his mother had lived in was a bit of a strain for Jian Li’s family to afford.
After the nursing home’s assessment, Li Jian’s mother was rated as a level 1, which means she has some mobility and can take care of herself basically. The monthly fee for such an elderly person is more than $12,000. If she is completely disabled and is assessed as a level three, the monthly fee is 16,000 to 17,000 yuan.
Li Jian said, if you go to live in that nursing home, your mother’s monthly pension “only a fraction”, the remaining gap to be shared by the two siblings. But more than 10,000 yuan per month is “a bit difficult”.
Elderly people eating at the nursing service center
Photo source: IC photo
But Lu Xiaoya told reporters that she might not be able to afford the nursing home her mother had been in when she needed to find a nursing care facility. Her mother retired from the Paris bureau of Xinhua News Agency in the late 1980s, and her relatively adequate pension allowed her to pay for high-quality care.
Li Jian and her sister had envisioned renting a one-bedroom apartment in the neighborhood where they lived and hiring a full-time caregiver. However, they eventually gave up because they could not convince their mother and could not find a suitable caregiver. When they tried to find a caregiver, they were often “reluctant to come as soon as they talked. “If it is to accompany the elderly, to wash clothes and cook for them, this can be. But if they have to take care of the elderly who are disabled and demented, and they are chained up every day, they are not willing to do it.”
In Li Ran’s family, for example, after both grandparents were disabled and bedridden, his mother began to take care of them at home full-time. On the one hand, to save money, and on the other hand, she had not heard of any local professional care institutions. “We also thought about hiring someone, but once they heard that both elderly people in the family were disabled, they were unwilling to do it.”
Li Ran’s parents are not yet 50 years old, but caring for two elderly people with disabilities makes the whole family exhausted. His father, who works for the local authorities, needs to go to meetings and go to the countryside all year round, but after his grandmother is also bedridden, he has to rush back home to help at any time. “All the time outside of work, he went home immediately, with absolutely no recreational activities.” And his mother, who took the lion’s share of caregiving responsibilities, was not as fond of dressing up or caring much from the time his grandmother was hospitalized.
The weekly rotation mechanism that Ken Lee agreed with his sister was designed to give everyone a break. But Jian Li had a new worry. His sister’s children are married, but there is no next generation yet. Once there is a next generation when the sister’s focus will inevitably shift. “It’s either take care of the old or the young” seems to be the fate of most Chinese seniors their age.
This will accelerate their decision to send their mother to a professional care facility. Li Jian, who has read many books on senior care and caregiving both at home and abroad, believes that there are not enough options for senior care in China, nor are they complete enough. “There should be a variety, and depending on my financial resources and needs, I can choose A or choose B. What I personally always expected was to have more options, but now there are none.” Li Jian said that both software and hardware meet his expectations and are affordable, which now seems unlikely.
Sending hope for long term care insurance
Qiao Xiaochun said the key to old age is nurturing, and in the three-way interaction between the pension insurance system, long-term care insurance system and medical insurance system, long-term care insurance is the core of it.
Shanghai and Chengdu are the first cities in China to be approved to implement pilot long-term care insurance. Wang Chino’s company, Fushoukang Group, is on the first list of providers in both cities to purchase professional care services for long-term care insurance. Wang notes that LTC insurance policies vary from city to city, and even from district to district in the same city.
Shanghai and Chengdu’s LTC insurance policies differ significantly in terms of the level of disability, age, and how benefits are paid.
In Shanghai, the government sends assessment experts to assess the level of disability of the elderly who apply for home care services. According to the different levels of disability, home care services are provided at the appropriate frequency. The cost is shared by the government and the individual, with the government paying 90% and the individual paying 10%.
In Chengdu, at the beginning of the LTC insurance policy, relatives of the disabled are encouraged to become caregivers first. After the assessment by the assessment experts sent by the government, the government will grant LTC insurance benefits to the disabled or their relative caregivers if they meet the conditions of severe disability. By June 2020, Chengdu will introduce a third-party professional care service provider to provide home care services for the severely disabled.
“Because there is no unified document or standard to make it mandatory nationwide, it’s still mainly piloted around the country, so it’s a hundred flowers.” Wang Chino said.
As a professional care service provider, if long-term care insurance home services can be intervened by professional service organizations from the beginning and ensure a reasonable frequency of services, this will ensure the quality of care and gradually build public awareness and recognition of professional care, which will help promote the benign development of the whole industry and the optimization and upgrading of the upstream and downstream of the industry chain.
However, Qiao Xiaochun pointed out that after five years of piloting long-term care insurance in China, the future is still not clear. One of the key issues is the lack of institutional design to ensure effective funding sources. At present, the funding source of long-term care insurance mainly comes from health insurance funds.
“It has not become an independent system, because the money problem is not solved, still in the health insurance money. It’s fine as a pilot, but it will be difficult to promote it nationwide because there is not enough money in the national health insurance.” Qiao Xiaochun pointed out. This also makes the current domestic pilot of long-term care insurance is significantly different from the real insurance. “It’s not a real insurance, because in this system, the Chinese people don’t pay separately, they mainly take money from the health insurance.”
In Qiao Xiaochun’s view, the cities that are currently piloting long-term care insurance in China are basically cities with strong economies and relatively rich health insurance funds. “Health insurance without money will not be able to engage in the pilot.” He suggested that the domestic long-term care insurance should be established separately as a special system, with financing shared by the state treasury and individuals. “The bottom is covered by policy first. Once the system is established, the market will rise. Otherwise most Chinese seniors can’t afford the senior care services that are on the market now.”
Wang Chino, once in Shanghai and now in Chengdu, told reporters that pensions for the elderly in first-tier big cities such as North, Shanghai and Guangzhou would be significantly better than in other cities, but the average level is actually not as high as one might think. The average pension in Shanghai, for example, is about 4,000 yuan, while in Chengdu it is more than 3,000 yuan. “Teachers and civil servants are better off. But many elderly people in their 80s and 90s don’t actually have pensions.”
And depending on the elderly themselves, the price of senior care services in the country varies widely. According to Wang Chino, hiring a nanny in Chengdu who only cooks and cleans for the elderly, rather than a professional caregiver, can cost between 3,200 and 4,500 yuan a month. If an elderly person is already semi-disabled and needs professional caregivers with certain skills, the price is between 4,000 and 5,000 yuan. In the case of a fully disabled elderly person, the cost of care is typically between $4,500 and $5,500 or more.
“These are general prices. If the needs are more complex or the quality of care is higher, up to 8,000 yuan is also available, which may mean that the nurse goes to the home to take care of the elderly.” Wang Chino said, “There is a huge shortage of professional nursing staff nationwide. Because of the low barrier to entry itself, there is now a mixed bag of practitioners doing life care in the country, with varying levels.”
When his mother does reach the day of total disability, Li Jian said, he and his sister will send her to a place that can provide professional services, and if money is tight, they will sell his mother’s house to provide for her. “But how many people don’t have a house?” He understands that he is relatively fortunate after all.
As to whether he would stay at home or go to a nursing home, Li Jian said that if he could have professional support staff such as nurses and social workers come to his home, as described in the book, he would still be willing to age at home and would not let his children take full responsibility for his care.
However, when a person grows old, is it enough to receive care? Yang Ji, who lives in Maoming, Guangdong Province, provides a sad footnote to understanding longevity in China today.
His grandmother lived until she was 101 years old, able to move freely, without disability or dementia. But after living past 100, she smashed all the pots and pans in her room one day and hanged herself by her window with the electric fan cord. “She lived on the first floor, in fact, the windowsill was very short, and it was definitely possible to save herself if she wanted to.”
At the grandmother’s funeral, many people in the village came to mourn. In their eyes, this is a “happy funeral”. But they did not know that after living a long life, the grandmother took her own life to say goodbye to the world. Yang Ji said that although she was cared for by her father and uncle in turn, “no one really cared for her” and “she lost her connection to people and the world.
(At the request of the interviewer, Li Jian and Li Ran are pseudonyms in the article)
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