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original title: every day with alzheimer's disease

workers' daily - china workers' network reporter cao yue and he shaocheng

becoming a caregiver for an alzheimer's patient is something that many people cannot avoid. facing a battle that will eventually "fail," caregivers' days and nights are filled with exhaustion, collapse, loneliness, and worry, struggling between forgetting and remembering. in order to keep life going and hope alive, caregivers have to go through a lot of hardships every step of the way with alzheimer's patients.

at beijing kangyuxuan nursing home, a family member is helping a sick elderly person walk and chat. photo by cao yue, a reporter from workers' daily-china workers' network

"you stole my money, give it back to me!"

while he was cleaning his mother's room, the 86-year-old mother suddenly became emotional and started beating and scolding her son song qingfeng.

"mom, i didn't take it."

"you're the one who stole it. my money is gone. i'm calling the police!"

"stop it, i really didn't take it!" facing his mother, 60-year-old song qingfeng felt extremely aggrieved and couldn't help but yell out in anger.

his mother suffers from alzheimer's disease and always fantasizes that someone has stolen her things. such conversations happen every few days, and the police have come to their house many times. at first, song qingfeng patiently explained and took his mother to "pretend" to find money, but after taking care of his mother for more than three years, his patience has also decreased. after losing control, he regretted it again, blaming himself for getting angry at his mother who had lost her memory.

feeling wronged, blaming himself, and returning to calm, song qingfeng picked up the broom and continued to clean the room. this cycle is song qingfeng's daily routine during his years of care, and it is also the daily routine of many alzheimer's patients' caregivers.

september 21 is world alzheimer's day. the "china alzheimer's report 2024", compiled by experts from multiple institutions including the national center for chronic non-communicable disease prevention and control of the chinese center for disease control and prevention, led by renji hospital affiliated to shanghai jiao tong university school of medicine, shows that there are 16.99 million cases of alzheimer's disease and other dementias in my country. in the past 30 years, with the acceleration of the aging process of the population, the incidence and mortality of alzheimer's disease have risen rapidly, and it has become the fifth leading cause of death among urban and rural residents in china.

"this is a cruel diagnosis, which foreshadows a painful and long process. this diagnosis is also a 'curse' - the patient's family and close friends have to shoulder increasingly heavy care responsibilities." after caring for her husband for 9 years, scholar lan jiang wrote in a book about her personal care experience.

the eraser in your mind

when her father was diagnosed with alzheimer's disease, yang du's emotions did not fluctuate much. the doctor's diagnosis only confirmed her guesses for several weeks.

in the winter of 2017, my 79-year-old father fell and broke his thigh. the surgery and rehabilitation lasted for half a year. during this period, my father, who was originally serious, became less and less talkative, and there was no smile on his face.

at first, yang du just thought that it was the physical pain and the long recovery process that made his father, who had been strong all his life, unbearable, or that the hospital environment made his father uncomfortable. but after returning home, his father spoke less and less, sometimes not speaking for a whole day, sitting by the window in a daze for a whole day, and ignoring questions from his wife and daughter.

"strange" things happened more and more every day. one day, yang du was watching tv in the living room when he heard the sound of throwing something in the bathroom. he rushed in and saw his father getting angry at his toothbrush and toothpaste: "why can't i do this?" it turned out that his father had been unable to squeeze toothpaste onto his toothbrush for several days. at night, his father had to go to the bathroom frequently. on one night, yang du accompanied his father to the bathroom 10 times, so much so that when he went to work the next day, yang du couldn't open his eyes.

yang du realized that something was wrong and asked his mother to take his father to the hospital for a checkup to see if there was any neurological problem. in the neurology department, the doctor performed moca scale tests, hippocampal mri tests, blood tests and other tests on his father. during the examination, yang du found that his father was still sensitive to numbers, but he could no longer draw a complete circle with a pen, and he had no idea about computers, something his father had studied all his life.

"it's alzheimer's disease, moderate to severe." holding the doctor's diagnosis and prescribed medicine, yang du thought about what his father would face in the future: loss of memory, loss of mobility, loss of physiological functions, and even loss of life...

compared to yang du, song qingfeng noticed his mother's abnormality earlier and more keenly, because he and his wife had previously taken care of his parents-in-law who also suffered from alzheimer's disease.

perhaps stimulated by his father's sudden death, song qingfeng discovered that his mother had burned the pot dry several times in the month after his father's death, and his mother knew nothing about it. at the same time, his mother's temper became worse and worse, and her hallucinations became more and more serious. she said that she often saw her father walking around at home. "it must be that disease again." with the experience of taking care of the two patients before, song qingfeng and his wife had experience this time. they made their own judgment without even waiting for the doctor's diagnosis.

alzheimer's disease is a brain disease of the elderly. it is like an "eraser" in the brain. as brain cells rapidly degenerate, the patient's memory is erased bit by bit. as a common dementia, during the progression of alzheimer's disease, patients may experience symptoms such as cognitive dysfunction, progressive memory impairment, personality changes, and language disorders, which ultimately seriously affect their ability to live in daily life. therefore, some people call alzheimer's disease "the most undignified terminal illness."

"our knowledge of alzheimer's disease is completely inadequate. after caring for three elderly people, i realized that the disease may show symptoms very early. if it is detected and intervened early, the subsequent course of the disease may not progress too quickly." song qingfeng hopes that the community can carry out more screening, rather than letting people delay treatment because of the saying "old people tend to forget things."

hu yong and his mother. photo provided by the interviewee

becoming a caregiver

"when taking care of my mother, i have to treat her like a 1- to 3-year-old child. she should eat liquid food and have everything. i have to make sure she eats high-fiber, high-protein and potassium-rich foods, and she should eat small meals frequently. i have to move her arms and legs often and tease her. even the things she uses are similar to those of a child, such as a small silk or cotton pad, talcum powder, a washing bottle, a diaper cream, a disinfectant brush, and swallowable toothpaste."

late at night on august 31, after a busy day of caregiving, hu yong, a professor at the school of journalism and communication of peking university, wrote a post titled “miscellaneous notes on caregiving” on his wechat moments.

a few months ago, an article titled "when a peking university professor becomes a 24-hour caregiver" went viral on the internet. hu yong's story of caring for his mother with alzheimer's disease allowed more people to see the daily life of a caregiver.

most families choose to let the elderly with alzheimer's disease live at home. taking beijing as an example, 99% of the elderly and more than 90% of the severely disabled and demented elderly in beijing choose to live at home. the responsibility of care naturally falls on the family members.

however, the workload of caring for an elderly person with alzheimer's disease is three times or even more than that of caring for an ordinary elderly person. many elderly people start with amnesia and gradually develop incontinence and cannot eat independently. every time the disease worsens, the workload of care doubles.

on weekdays, hu yong and the nanny work together to take care of his mother. in hu yong's opinion, when his mother's symptoms were mild at first, he was just a "nanny", repeating the automatic procedures of "changing diapers, wiping feces and urine, bathing, washing sheets, cooking", etc. but now he is more like a caregiver with professional knowledge. "as a person in his 50s, a dilemma i didn't expect before is that it is entirely possible for a person of this age to go from a successful professional to a full-time caregiver."

suction machine, oxygen concentrator, blood glucose meter, blood pressure monitor, blood oximeter, nebulizer... today, hu yong's home has become a small nurse station. when caring for his mother, hu yong's nerves are always tense: "the hospital only diagnosed alzheimer's disease, but no one told me how to care for an alzheimer's patient. all the care knowledge i learned from my mother, so i am afraid of making mistakes. for example, when suctioning, i don't know whether the tube is inserted deep or shallow, so i have to test it carefully. even so, changes in the condition may make the experience you have learned with great difficulty disappear, and you have to start from scratch and learn the new stage of care knowledge for patients."

becoming a caregiver has given hu yong a new understanding of time. it is difficult for him to plan his time in advance, and he can only look at it step by step, such as not being able to go out for too long, not being away from the person being cared for too long, etc. "in the process of caring, a day seems like an eternity. because each day has no characteristics, the difference between the previous day and the next day gradually becomes blurred."

for caregivers, they are more afraid of the night. reversing day and night is a typical symptom of alzheimer's disease. not sleeping, getting up frequently at night, wetting the bed...all these things make the night of caregivers extremely long and torturous.

wei xiuyun clearly remembers that one night five years ago, after taking care of her 80-year-old husband, she fell asleep after a tiring day, and was awakened by the phone at 5 a.m. a stranger's voice came from the other end of the phone: "hello, grandma, where is your home? grandpa is lost..." wei xiuyun woke up instantly and looked at the open door, panicking.

when her husband was sent back, he was only wearing a vest and shorts. wei xiuyun cried when she saw her husband shivering in the long night. "now that i think about it, maybe he just wanted to go to the bathroom that night, and he might have opened the wrong door and went out. fortunately, he still remembered my phone number." since that day, wei xiuyun has never slept well at night. as long as she heard her husband move, she would wake up immediately. when her husband got up at night, she would follow him, for fear that he would "run away from home" again.

such a life was hard for wei xiuyun, who was 74 at the time, to endure. "we have been married for a lifetime. i feel sorry for him and love him, so i have been trying to take care of him, but i don't know if i can live to see tomorrow." even five years later, wei xiuyun still couldn't stop crying when she recalled the state when she first became a caregiver.

today, her husband has moved into a nursing home, but "care" has long become wei xiuyun's habit. every morning at 6 o'clock, wei xiuyun will leave home, take four buses and spend an hour and a half to go to the nursing home to walk with her husband. "walking was our favorite thing when we were young, and i want to walk with him more. i am 79 years old this year, and i can't walk for much longer."

the elderly's "toys" are placed in the elderly care and educational community of beijing shoushan fuhai nursing home. photo by cao yue, a reporter from workers' daily - china workers' network

out of control emotions

"dad, where the hell are you? are you on the phone?"

"i'm in the hotel. everything is fine. let me rest for a few days. you've worked hard to take care of grandma these days."

looking at the dozen missed calls and dozens of messages from his children and wife, song qingfeng replied to them briefly, then immediately turned off his phone, fell on the bed, and fell asleep. because his son was home for the holiday, song qingfeng finally relaxed after being tense for a long time. at this moment, he chose to "disappear".

the mother had severe hallucinations. whenever song qingfeng's brother came to visit, she would always complain that song qingfeng had stolen money or that he had abused her. the two brothers had a big fight because of this. no matter how song qingfeng explained, his brother would not believe him. "because of taking care of my mother, i 'lost' my brother."

as the main caregiver at home, the heavy caregiving task caused song qingfeng's back to be damaged and he had difficulty falling asleep. as a usually silent person, he did not know how to vent his inner emotions, and the word "breakdown" often emerged in his heart. after taking care of his mother for so many years, he really needed a real rest. for this reason, whenever his son came home on vacation to take over the care responsibility, song qingfeng would lock himself in the hotel room, drinking, watching tv, and sleeping...

yang du is also on the verge of collapse. "he throws up the food i worked so hard to prepare, takes off the diaper i just put on, and walks with the help of a walker in the middle of the night. i don't know how many times the neighbors downstairs have complained... every time i encounter such a situation, i can't help but get angry, but what's the use of getting angry?"

responsibility, giving back, or accepting one's fate, yang du can no longer clearly explain what keeps him persisting on the path of care.

every time she accompanied her father to a follow-up visit, yang du would make another appointment for herself at the hospital, because she felt that she was trapped in anxiety all day long, and the doctor judged that she had a tendency to depression. "i feel like xianglin sao. i have to tell everyone how difficult and tormented i am. if i don't tell everyone, i will feel even worse." in the first few years of becoming a caregiver, the thing yang du looked forward to most every day was going to the office. "work is my only chance to breathe." but now, she has no way out.

during her 15 years working at beijing shoushan fuhai nursing home, yan xiaojuan has seen too many family members who have experienced emotional breakdowns. "basically, every family member sent their elderly with alzheimer's disease here crying." yan xiaojuan knows that these tears reflect their guilt and helplessness towards their loved ones, as well as their own grievances and suffering. therefore, whenever a family member comes, the caregivers not only have to do a good job of checking and comforting the elderly, but also provide psychological counseling for the family member.

"no one understands, no one to talk to, and nowhere to socialize. many family members who lack care training have lived an isolated life. i can understand their collapse. however, the pressure and emotions of family members will be transmitted to patients. patients may feel that they have caused trouble to their families, and their condition will develop faster." yan xiaojuan said that before family members leave the nursing home, she always advises them to go out for a trip or have a good sleep for a few days. "only by taking care of yourself first can you take care of your family."

jin enjing (first from right) works with an old man in the seahorse memory workshop. photo by shi hongyu, a reporter from workers' daily and china workers' network

another way out

"i was not a good caregiver." many years later, when talking about her mother who passed away in her 60s from alzheimer's disease, kim eun-kyung's eyes were still full of sadness.

in 1999, when her mother was diagnosed, kim eun-kyung was just over 30 years old and was an internist. her professional knowledge told her how to use the medicine, but it did not provide much substantive help in caring for her mother. her mother's condition progressed rapidly, and she visited a nursing home during this period. but when she saw the empty eyes of the elderly in the nursing home, "alzheimer's patients should not be like this", the voice in her heart made her decisively give up the idea of ​​sending her mother to a nursing home.

after her mother passed away in 2006, jin enjing would keep thinking, "what did i do wrong to make my mother go so early?" by chance, she turned her research direction to dementia, wanting to find an answer for herself and other families with dementia. since then, she has traveled all over the world to research nursing homes that care for the elderly with dementia. in the process, an ideal nursing home for the elderly with dementia gradually took shape in her mind. in 2017, her ideal came true and beijing kang yu xuan nursing home was built.

in this nursing home, the elderly can come and go freely, enjoy fine meals, play the piano, pet cats, socialize, listen to concerts, and even have a wine party every month. there are no cameras installed in the elderly's rooms, and no handrails installed in the corridors. everything does not look like a nursing home. "we cannot restrict their freedom and deprive them of their right to enjoy life just because they are sick." in the process of establishing the nursing home, jin enjing insisted on his own ideas.

in the past, when she was taking care of her mother, the tedious eating, drinking, defecating and urinating care would drown out kim eun-kyung's smile to her mother in a few days. "if i could talk to my mother more at that time, she would feel more of my love for her. this lack of emotional companionship is my regret." because of her own experience, kim eun-kyung feels that family members are always an important part of the care team. she hopes that through professional care, family members will have more time to chat and walk with the elderly. "mutual trust and common ideas can make alzheimer's patients feel the warmth of family affection."

painting oil paintings, writing calligraphy, knitting sweaters, watching movies... every monday, wednesday and saturday afternoon, the hippocampus memory workshop of kang yuxuan nursing home holds various activities. many elderly people who are anxious because of illness can calm down as soon as they enter the workshop and complete their "work" seriously.

at first, some family members and volunteers were worried: can the elderly really accomplish these tasks? "in fact, as long as there is a suitable environment and professional guidance, the elderly will get into the right state. sometimes they can do better than me." three years of volunteer experience has completely refreshed li jia's understanding of alzheimer's patients. "don't always think they can't do it. instead, take them to try more and be more patient. the elderly will surprise us."

for the family members, the workshop is more like a mutual aid group. wei xiuyun and several other family members are the founders of the workshop and are called "seahorse sisters". "here, sewing clothes and embroidering with other sisters and volunteers is just for fun, and i don't think about my spouse's illness." driven by the "seahorse sisters" and volunteers, the elderly quickly sewed dozens of canvas bags, and some elderly people drew on the bags. soon, these canvas bags will be sold for charity, and the money raised will be donated to the children of hope primary school.

in jin enjing's heart, since the day she founded kang yuxuan, she has determined that this is not a nursing home, but a common home for the elderly, a place where patients and caregivers can return to normal life.

an elderly man with alzheimer's disease is playing the piano. photo by cao yue, a reporter from workers' daily and china workers' network

guarding the passing of time

"there are only four kinds of people in the world: those who used to be caregivers, those who are caregivers now, those who are about to become caregivers, and those who need caregivers." his mother's illness made hu yong think about life in a new way, and even made him redefine the word "care."

after being troubled by his mother's illness for three or four years, hu yong began to look for a breakthrough in care. "home care and sending the child to a nursing home are not a question of choosing one or the other. there is still a lot that can be done between the two."

in august this year, hu yong invited a bathing assistant to come to his home for the first time and let his mother take a comfortable bath. at that moment, hu yong was full of gratitude to the bathing assistant. "i always wonder if there can be medical staff to come to my home regularly to draw blood for my mother's test and change the nasogastric tube, and if there can be a caregiver who can replace me for a day so that i can go out and take a breath, even if it can reduce a little burden."

hu yong's wish has been put into practice in some places. in 2018, as one of the first national pilot areas for home and community-based elderly care service reform, the civil affairs bureau of fengtai district, beijing, launched a "respite service" to give caregivers of disabled and demented elderly people a "holiday": the government pays for the family members or staff who take long-term care of disabled and demented elderly people to have a "respite" opportunity of no more than 24 days within half a year. during these 24 days, family members can choose to send the elderly to an institution for short-term care, or they can let the institution staff come to take care of the elderly at home.

in 2019, shanghai launched the "pilot project for building friendly communities for elderly people with cognitive impairment". the pilot streets and towns widely carried out publicity and education, risk assessment, early intervention and other projects for elderly people with cognitive impairment in the community, and explored the establishment of a community care service system for elderly people with cognitive impairment.

all support cannot be achieved without money. since 2016, the country has launched two rounds of long-term care insurance pilots, and the pilot scope has now expanded to 49 cities across the country. at the beginning of 2024, at the national medical security work conference, the national medical security administration further emphasized the need to "promote the establishment of a long-term care insurance system in accordance with the decisions and deployments of the party central committee and the state council", and long-term care insurance has gradually moved from pilot projects to full implementation.

"after taking care of hundreds of elderly people, i often think that if one day i am the one being cared for, i hope there will be more institutions and forces to help my family and relieve their pressure." yan xiaojuan's idea may be the idea of ​​most caregivers.

after taking care of her father for seven years, yang du has reconciled with the identity of a "caregiver" and no longer struggles with the question "why is it my father?" during the care, she gradually discovered her father's loveliness and his deep affection and attachment to her mother. "my father would kiss my mother's cheek from time to time. perhaps in his mind, time has returned to the time when they first met."

hu yong has also called for the construction of a "care-oriented society" on many occasions. he knows that today's call may not solve the actual problem of caring for his mother, but it will definitely help future generations, especially the generation of only children, because today's young people may also become caregivers and the cared for one day in the future. "of course, what i look forward to most is the development of drugs to completely cure alzheimer's disease."

(at the request of the interviewees, song qingfeng and yang du are pseudonyms)

source: china workers network-workers daily