Caring for Alzheimer's patients: like watching over a child and always ready to be forgotten

When memory is taken away by disease, what are the strongest memories of Alzheimer's patients?

Can always recite his daughter's phone number; give his partner a dish as if muscle memory; can't forget the year he carried his son to the city to see a doctor and save a life ......

Memory loss is the most common symptom of Alzheimer's disease, a degenerative brain disease that gradually eats away at patients' memories and cognition. However, during this irreversible process, patients' loving memories of their families are often difficult to erase, and their families become all they have to fall back on in the last leg of their lives.

From the point of memory break, Alzheimer's patients can also become lost, unable to count, unable to distinguish between left and right, and even develop irritability, paranoia, and major personality changes, and family members have to undergo difficult transitions to find a way to watch over them again. This problem is becoming increasingly evident - there are currently about 10 million Alzheimer's disease patients in China among those aged 60 and older. The sorrows and joys of these small families are forming a B-side of society.

Today (Sept. 21), is World Alzheimer's Day. We have collected the stories of five families of patients in this long goodbye, when the end is right there, every day, becomes precious.

Forgetting everything

Couldn't forget her daughter's phone call

Mom forgot her as if it happened in a flash.

One day in August last year, mom suddenly pointed to the rice burning aunt and asked, "Who is this person?" Wu Joe (a pseudonym) thought her mom was joking, but she soon realized something was wrong and took her mom to the hospital that day. "The doctor said it was Alzheimer's disease, moderately severe."

That day. From then on, Mom couldn't recognize anyone, not even her.

Alzheimer's disease is a degenerative disease of the nervous system with insidious onset and progressive development. The clinical features are a progressive aggravation of near memory, calculation, judgment, attention, and language functions. on September 20, Wang Haiphong, director of the Department of Aging of the National Health Commission, said that Alzheimer's disease is the most dominant type of dementia in old age, and there are about 15 million dementia patients in China among people aged 60 and above, 10 million of whom are Alzheimer's disease patients.

"The two months or so (last year) from August to October were just horrible." Wu Joe recalls that when she was first diagnosed, her mother was like a "lost soul", her gaze was dull, her look was wandering, and she did whatever she was told to do. At night, her mother did not sleep, and kept wanting to go out, saying she wanted to go home - her memory returned to her childhood house by the river, and she did not recognize the home she had been living in.

During that time, Wu Joe gave up her job to watch over her mother day and night, basically staying awake at night, preparing three meals during the day, and taking care of her parents' living. Dad suffers from cerebral infarction, walking faltering, and can not leave the cane, the family has to carry everything on her own. During that month, Wu Joe lost 20 pounds, and her mother, who was time-disrupted and always refused to eat, also lost 20 pounds.

Until September, the mother seemed to slowly recognize her daughter, but still could not distinguish her age, as if Wu Joe was still a little girl of four or five years old. By then, mom also gradually understood that she was sick and "couldn't remember things", which made her sad that bad luck still found itself - Wu Joe's grandmother suffered from Alzheimer's, and mom was always afraid of heredity.

Wu Joe's mother is leaning on her father, saying that she is sad after being sick, and her father is comforting her. Interviewee Contributed photo

One day, Wu Joe found her mom leaning on her dad's shoulder and crying, "How come I don't remember anything?" Mom has always been strong, the family listened to her on all matters, and also cooked good food. But now, even if she had just eaten, she would forget it as soon as she turned her head. Dad was sad to hear that, and kept comforting, "It's okay, it's okay, I'll stay with you."

Wu Joe did not want her mother to wither away like this.

When her condition was at its worst, Wu Joe insisted on taking her for a walk every day and sent her friends to record it.

From daily walks, Wu Joe took her mother to reacquaint herself with the world. "Shop and forget, forget to shop", Wu Joe insisted on taking her mom out every day, talking about the blue sky and white clouds, flowers, and plants. She also started learning how to talk to her mom again.

"Can't ask, do you remember" "Can't ask, what did you do in the morning" "Can't say, I just talked to you" "Absolutely can't ask, do you still know Do I" ...... These are the list of prohibitions for communicating with Alzheimer's patients.

Memories seem to play hide-and-seek with Alzheimer's patients, and the more anxious they are, the less they remember. They get depressed, they get sad, they blame themselves, but they just can't find the exit in the fog. Time seems to be playing a joke on them too. In her mother's mind, she is suddenly the young girl listening to her boyfriend's love songs by the river, and suddenly the little girl following her mother's ass in the old house.

Wu Joe's approach is to "always just go through the progression" and "always go along with what she says".

"Mom told me all her little secrets." Such days, so Wu Joe unexpectedly harvested many sweet memories, Mom would talk about falling in love, how Dad sang to her the song "Green Island Serenade", "This green island like a boat, rocking in the moonlit night, girl yo, you also float in my heart ...... "

These stories Wu Joe had never heard of, growing up, she knew for the first time that her father could sing.

On her most tired days, the legged dad will pull mom on the couch to watch TV to prevent her from going out and getting lost, Wu Joe this to catch a good night's sleep. The good thing is that as her family stayed with her moment by moment, her mom's condition improved and she gradually accepted the fact that she was sick and began to learn to retrieve her memories on her own.

She would write down important things that suddenly came to her mind on sticky notes and take them out at any time to look through them.

Wu Joe's mother wrote family matters on sticky notes so she wouldn't forget them.

"Remember, burn rice small rice cooker first press the middle white dot on top", "wrap ravioli plus June fresh, raw border (ginger), oil, meat, green vegetables, cooking wine" ......

When she was first diagnosed, her family didn't dare to let her into the kitchen at all, for fear of fire or slipping. Now, more than a year has passed, and mom has been able to get back into the kitchen, Wu Joe came back from work and smelled the fragrance of rice. On September 5 this year, Wu Joe ate the "Mom's brand" braised pork chops, a specialty of her mother's after disappearing for more than a year back to the dinner table. She was so happy that she wanted to shed tears, "This is the taste of home!"

In the process of taking care of her mother, she has tried every possible way, giving her mother a positioning watch in case she gets lost; installing cameras at home to keep track of her parents; explaining her mother's condition to the neighbors and security guards around her, asking them to remind her to come home; hanging an iron tag with her phone number on her mother's key chain so that she can call her to collect it in case she gets lost.

All of them worked, except the last one. Because her mother had never forgotten her phone number, the number was engraved in her heart.

After her mother was able to take care of herself, Wu Joe returned to the workplace, and her new job has been on board for more than a month. Once again "back to society", Wu Joe has a lot of different feelings, "family is my greatest strength", and "no matter what difficulties encountered, as long as the family is in, I am not afraid of anything! "

The mutual support of their parents in their illness, also let Wu Joe begin to rethink marriage and family. "Previously did not feel compelled to get married, as if the relationship is to follow fate. Now after encountering difficulties, only to feel how important it is for a family to be together and be able to rely on each other." After this experience, Wu Joe began to look forward to marriage, "or the best feelings to grow old with each other."

It's like muscle memory to give your partner a dish

In the eyes of her daughter, Rice (a pseudonym), after her mother's illness, the roles of mom and dad at home seemed to be reversed.

Before she was diagnosed, her mother, Han Kuchen (a pseudonym), had already developed a condition where she would get lost during the day. At first, the family didn't take it seriously, "Mom's sense of direction has never been very good, and she used to have trouble finding her way at night." What made them realize that something was wrong was a car accident in which Han Kuchen, riding a bicycle, failed to avoid a speeding car on the road and hit her head. "A normal person would have avoided it in time, but she probably didn't react or reacted very slowly."

After undergoing a hospital MRI, psychiatric-psychological tests, general knowledge, and intelligence tests ...... In the summer of 2018, Han Kuchen, 50, was diagnosed with Alzheimer's disease at the Fifth Medical Center of the PAL General Hospital (PAL Hospital No. 307) in Beijing.

Alzheimer's disease, a disease that in the inherent impression belongs exclusively to the elderly, has been trending younger in recent years, with the general age of onset advancing from the originally recognized 65 years to 55 years. Some people describe Alzheimer's disease as "the longest goodbye", before the end of life, Alzheimer's disease patients will have all the memories and reasoning will slip through the fingers

Han Kuchen also slowly entered the slow and irreversible course of the disease: first, she forgot things, her cognitive ability became worse and worse, then her language skills slowly faded, her memory gradually lost, and she lost her ability to take care of herself step by step. At one point, Han Kuchen was shaking in the middle of the night, curled up in a ball,l and wouldn't eat. Later, like a schizophrenic, she stomped her feet frantically and went to the toilet frequently in the middle of the night. "Mom was very thin, and at that time it was like a candle that was about to go out, so people didn't know what to do." As the "eraser" in Han Chechen's mind mercilessly erases her memories, the mother she once was in the eyes of the rice grain seems to have ceased to exist.

Han Kuchen and Wang Jun take a walk. At first, Han Kuchen had a lot of problems with cooking, forgetting to put salt in, turning off the heat, sometimes forgetting that the water was still boiling, and boiling the pot dry. Later, Han Kuchen didn't know which toilet was which, and sometimes she would forget that she had been to the toilet, running back and forth to the toilet. Slowly, her ability to take care of herself was getting worse and worse, and she didn't even know how to put on her clothes. Before going out, Han Kuchen stared at the shoe cabinet at the door for a long time, unable to find where her shoe here, and had no concept of left and right. "Mom's reaction has become very slow, she doesn't know to lift her feet when she sees her shoes, sometimes the tongues are stuck and she doesn't feel uncomfortable, she just stares blankly."

Complex and changeable emotions, unable to take care of themselves, lost and wandering outside ...... forgetting everything around them at the same time, people with Alzheimer's disease will gradually lose themselves.

"Now mom can still simply say 'know', more than two words, she can not say. The good thing is that she can still understand our words." Rice gradually accepted the changes in her mother. To her relief, her father, Wang Jun (a pseudonym), did not complain and actively faced this premature onset of forgetfulness and aging with her mother.

"For as long as I can remember, it was always my mother who took care of my father without fail, not even letting him wash a pair of socks. When she was young, she was very diligent and capable and loved to talk to people and gossip. But after she got sick, she gradually spoke less and less, and her friends stopped seeing each other." After her mother's illness, Rice's father, a man who had never been in the kitchen before, became a chef who cooked well. He took care of all the household chores and didn't complain. "He always took care of mom, and it was as if their roles were reversed."

"Dad likes to sing, mom is not clear-headed, but as soon as my dad sings she smiles, and dad takes her singing every day." In Rice's impression, the original mom would be more nagging, while the dad was more reticent. "Now my dad has become a little more talkative. Originally he wasn't a particularly patient person, but now he's become patient too." Once a family focused on saving, Han Kuchen and her family could not afford to spend money on travel. After the illness, they began to go out with tour groups more often. "Now mom is poor in self-care, long-distance travel difficulties, but near home, dad tried to take her out to turn."

Han Kuchen and Wang Jun go out to play. Wang Jun is a junior high school teacher who now takes Mimi's mom to work every day. Mom can't leave him now, and sometimes when Dad goes out, she asks, "Where's your dad going? No matter where he goes, Rice's dad will always hold his mom's hand and walk slowly.

Alzheimer's disease has taken Han Kuchen to the desert of memory, but some habitual actions are engraved in her mind like a reflex. "Even now she is not conscious and has poor self-care skills, no matter what she eats, no matter which meal it is, she has to pour the food into her dad's bowl first." Before she became ill, Han Kuchen used to give her old partner a dish at every meal, a gesture that seemed like a kind of muscle memory, allowing her to be controlled by forgetfulness in her later years and still not forget to take care of each other.

Now that Rice is working in the Netherlands, one thing her mother doesn't forget every day is to video her. Rice says, "If I don't talk to her again for two days, she'll ask Dad to video me, and even though her brain function has degenerated into that of a small child and she doesn't know what I'm doing abroad, I know she's still holding on to me."

Carrying her son to the city for medical treatment

Saving a life

Zen Joshua's (pseudonym) life is a life of struggle. So much so that his eldest daughter, who is more than half a century old, now says with stars in her eyes, "Dad is the person I admire most in my life."

Zen Yaounde is the son of a farmer, and his three children have all moved to the city to live. But in the past few years, the eldest and youngest daughters have spent their days guarding their hometown in the countryside because he is sick and has to get lost when he leaves people - in 2017, Zen Yaounde, 71, was diagnosed with Alzheimer's disease, which has gotten worse in the past few years.

The most common clinical manifestation of Alzheimer's disease is memory loss. There is also a decline in language function and spatial recognition, which makes it easy to get lost and wander off.

The surveillance image of Zen Joshua's home when he was lost. Last month, Zen Yaounde just lost once, the family of three generations of six plus neighbors all out, full of the village to find, the road and small roads are searched, the river ditch also touched, just did not see people. But the police station monitoring shows that the old man did not leave the village. Until 9:30 p.m., the family found him in the janitorial room of an abandoned factory, he hung a head full of beads of sweat and was sleeping heavily.

"Dad is a capable person in our village, our family is the first to buy a TV, who thought he would have this disease." The eldest sister Zen Julian (a pseudonym) said.

The first one is a picture of Zen Yaounde on a business trip to Xi amen in his 40s.

Born in the 1940s, Zen Yaounde is one of the few high school education in the village, he worked as a brigade accountant, but also in the village foundry, textile factory, energy-saving lamp factory, paint factory, etc. as cadres, as a factory manager, but also had rabbits, goats, selling Popsicle, the family base is Zen Yaounde so little saved. When his son grew up, Zen Yaounde purchased a house for him in Houghton District, Shanghai.

But he is not used to living in the city, and now he still lives in his home in the countryside of Qinghai District, Shanghai. The compound, which he built in 1976, was one of the first small two-story buildings in the village. when the reporter visited on September 16, his two daughters were peeling contact lens cases with Zen Yaounde. at first glance, the three seemed like a production line in a small family workshop, but in fact, this was the rehabilitation training designed for him by his daughters.

Sisters Zen Julian and Zen Anhui take their father to sort contact lens cases and do cognitive training to slow down his condition.

After the illness, Zen Yaounde developed hand tremors and at one point could not hold chopsticks and be about to become unable to care for himself. The youngest daughter, Zen Anhui (a pseudonym), came up with a plan to bring home batches of expired and scrapped contact lenses to her father for sorting training after discussing with the leadership. She did the first job, unpacking; big sister did the second job, pouring water in the glasses box; dad was the third job, the blue box lid and white box body in two large buckets.

The two sisters stayed with him for more than half a year, asking him to peel enough for three big buckets at a time, and if Dad "disobeyed", the younger daughter pretended to answer the phone: "The factory manager is calling! Once Dad heard that he got back to work.

After practicing for more than half a year, Dad's hand tremors recovered, and now he can go out and dig wild vegetables.

Family members say that the youngest daughter, Zen Anhui, is Zen Joshua's most beloved child. The family management of the oldest and the second is called names, and only the management of the youngest daughter is called "sister" or "little a sister". The reporter asked about the sister's childhood, and Zen Yaounde only repeated a sentence, "little girl can not be found, anxiously