The most regrettable thing in my life: I didn't let my mother die with dignity

Kim Eun-kyung is an internist,

In 2006, her mother died of Alzheimer's disease.

"I reflect on the 7 years of taking care of my mother,

I'm not a good caregiver. ”

At that time, the concept of dementia care in China,

It is still in the stage of regular administration and physical care.

Later, she went to Japan and Sweden to study Xi.

In 2017,

Opened the first in China in Beijing

An apartment dedicated to the elderly with dementia.

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Here, the elderly can arrange their bedrooms according to their preferences, and even put their favorite furniture and photos in

Unlike general nursing homes,

The model of "palliative care" and "group home" is adopted.

Specifically,

It is to make the elderly feel that they are still living in their own homes,

Therefore, there are no handrails in the hospital.

The elderly can decorate the bedroom with their favorite furniture,

You can go up and down the stairs to other floors,

Caregivers also do not have uniform uniforms.

In order to create a social atmosphere,

Elderly people can play adult poker games,

Do handicrafts to "make money" to buy daily necessities,

You can also work as a waiter in a café,

Continue the original state of life.

Kim Eun-kyung adheres to the concept of "people" as the center,

"They are first and foremost a big man,

Just got a small illness. ”

Editor: Zhang Yalan

Editor-in-charge: Ni Chujiao

French artist Anide, a number of original abstract paintings online, click on an art app or small program to purchase

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Kim Eun-kyung

I am a post-60s generation and have been an internist in China for more than 6 years. Later, the reason why I started research on dementia and opened the first "dementia apartment for the elderly" in China in 2017 was mainly because of my mother.

My mother suffered from dementia at an early age when she was 64 years old, in 1999, when I was just over 30 years old. So for me, it's really hard to accept.

At first, she couldn't find her way home, or she had to cook one dish in the morning, and then asked the same question over and over again...... At first, I didn't like to think about it "in that direction" because she was still young, but a few months later, my mother was diagnosed with Alzheimer's disease.

My mother was very petite, an intellectual, usually clean and elegant. I always thought she was very capable, and I had the impression that she cooked deliciously and would make me beautiful dresses...... But after getting sick, she got urinating and defecating everywhere, and she was also very irritable, and she had violent tendencies, she would beat the nanny, and when she was anxious, she would also beat my father, and the nanny often complained to me.

At first, we also thought that family companionship was important, so I often flew back from Japan to see her. Every time I came back, I could feel that her cognitive ability had dropped a little more, and it was very fast.

Later, we really had no choice, we also sent my mother to a psychiatric hospital, because the symptoms were not relieved, the hospital used a lot of psychotropic drugs, but I didn't expect her cognitive ability to decline faster, and we took her home again. Over and over again, our family's quality of life was very poor.

In retrospect, I wasn't a good caregiver. My mother cooks slowly, I can't help but urge, I don't seem to have the patience to finish something with her, she always looks at me with sincere fear. Now that I think about it, I know that my expression is wrong, I want her to be good, and I can't control myself. Every time I had to leave and I saw her standing at the door to see me off, I really cried.

My mother's condition progressed in a "textbook" manner, unable to speak or walk...... In 2006, after 7 years of illness, my mother died.

I began to reflect on myself, even as a doctor, I did not know enough about the subsequent development of this disease, I never thought that there was a solution to this disease other than medical methods.

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In 2007, Kim Eun-kyung took a photo with his colleagues at Harvard University

Later, until 2008, I had the opportunity to visit a local elderly care facility in Japan that specializes in dementia. At that time, there were already 2.7 million elderly people with dementia in Japan, and society was also facing huge pressure to care.

I remember very well that it was a Saturday morning, there was a small café in that institution, the sun was shining in, and the old people were wearing jewelry and drinking coffee, and the women were wearing makeup and beautiful dresses, and they would take the initiative to greet me. At that time, I realized that people with dementia can also go through their lives with dignity and dignity in this way.

In fact, Japan's dementia care philosophy and system were Xi from Sweden. At first, Sweden, like us, felt that if they had dementia, they had to be strictly supervised, and psychotropic drugs should be given on time, and the disabled elderly would have to turn over every two hours...... Later, it was discovered that people with dementia are very sensitive to the environment, and the unfamiliar environment will only make their situation more and more serious, and then the concept of "palliative care" was slowly introduced.

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In 2007, Kim Eun-kyung and the elderly man in the dementia apartment

In the 80s, Sweden was the first country in the world to build a facility dedicated to the elderly with dementia, which was also the prototype of "Group Home". The local government has built a small two-story building with a living room, dining room, and bedroom, which is no different from an ordinary home, where the elderly with dementia live, and the caregivers inside do not wear uniform uniforms and wear ordinary clothes.

The elderly still have a normal rhythm of life, they can do housework, cook, drink some red wine, and celebrate holidays normally...... It is to be people-centered, pay attention to the continuation of the life of the elderly, and pay attention to the residual physiological functions of the elderly.

That was an important opportunity. It gave me the idea of returning to China to do a demented apartment for the elderly.

In 2017, I opened China's first "Dementia Elderly Apartment" in Beijing. 

This small building follows the main form of the Swedish dementia institution, each floor is a unit (unit), a total of 4 floors, that is, 4 units, and the general layout of the inside is the same. There are bedrooms, living rooms, dining rooms, as well as a library corner and activity room, and the elderly can move freely without any restrictions.

It can be understood that it is a larger home. Although the layout in each unit is roughly the same, each elderly person's own bedroom is different. Just like the community we usually live in, going up and down the stairs looks the same, but you can arrange your own home however you want, and the elderly can go to other units like a visit.

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Here, the elderly can furnish their bedrooms to their liking

In the old man's bedroom, in addition to the bed and wardrobe, they can put anything they want to bring in, such as favorite furniture, old photos, and rag dolls...... They can furnish their bedrooms in whatever way they like, and some elderly people have moved their own fans and refrigerators to the same as they do.

Now, the apartment has been inhabited by nearly 90 elderly people. Every elderly person has been cared for by their family for a period of time, and finally they are sent here because they can't take care of them or can't stand it.

I remember a man in his 40s who took care of his mother for many years, and then he really couldn't help it, so he sent her here. He sat and told me about my mother, and before he could speak, he began to shed tears. While talking, his hands were shaking, and because he was taking care of his mother, he was severely anxious at that time and had to take medicine every day. He didn't even dare to look at his mother, he was so afraid of her.

After he arrived, he would occasionally come to visit, but each time he only asked about the nurse's mother, and everyone advised him to stay and meet his mother, but he resisted and found a reason to leave. After a few months, his mother's condition improved slightly, and he was willing to meet her. Such family members are not alone.

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Caregivers have to record the specific situation of the elderly every day, down to bath time and how much brunch they have eaten

Caregiving is also stressful for us.

There was once a 90-year-old man, and his family hired 4 nannies for him, including day shifts, night shifts, and those who were responsible for cooking and walking, but the old man was short-tempered, did not sleep at night, ran around during the day, and the 4 people still couldn't take care of him.

When I arrived at the apartment, I also yelled in the hallway all night, and I had several meetings with the team to record the condition of the elderly every night. Because he was a university professor, he was given a reading environment that he liked, and he was not forced to interfere with his behavior, and the situation eased after a few months.

We have always insisted on not treating them as patients, not too deliberately. We feel that a good space environment is very important, which is also architectural therapy, using design, to inadvertently relieve the anxiety of the elderly.

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Public spaces

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Curtains and wallpaper are in relatively saturated colors, and each space is differentiated, helping the elderly remember where they are

So we put a lot of thought into the architectural details.

Because the visual space of the elderly with dementia will also have problems, so in the apartment, the color of the curtains in the living room, dining room, and bedroom is different, which is to facilitate the elderly to identify the space, and the elderly can know where they are now through the color barrier. It's not very deliberate, "because you don't have a good memory, I deliberately did something for you", I think it's a burden to them.

But the door of the bedroom is almost the same, some old people don't quite recognize their names on the door, in order to let the old people remember where their bedroom is, at first I also thought of placing a "memory box" at the door of each old man, so that the old people can put their favorite things inside. But later I found out that because these old people have experienced the 5th and 60s, the things they like are also very similar. For example, an army-green schoolbag and a white water tank with a slogan.

Later, we put different colors of wallpaper on both sides of the corridor, so that at least the elderly could tell whether their "home" was on the left or right.

In the hallway, there are also no handrails on either side. In traditional elderly care institutions, in order to prevent the elderly from falling, handrails are "standard". But I think that when the handrail extends to the door of the room, there will always be a broken part, and if the elderly are Xi to relying on the handrail, they will have a sense of fear and anxiety about the broken end, and dare not take any further steps. And in our own homes, it's impossible to have handrails, it feels too much like an institution or a hospital.

We will help seniors reduce their risk of falls in other ways and help them exercise their physical function and balance, instead of the traditional way.

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Family members with the elderly

Once the elderly suffer from dementia, we are particularly prone to treat him as a patient and stare at his illness, but in fact, they are very emotionally rich and still have emotional needs.

Lin Fang's father is 70 years old this year, and after suffering from Alzheimer's disease, he has been taking care of Lin Fang's mother, who also passed away not long ago. The family had no choice but to send him in.

In recent times, he has been a bit irritable and often loites outside the apartment door and also tries to pull the door to get out. He also doesn't want to get close to anyone.

Because he had been a soldier before, his steps were very big and steady, and the nurses couldn't do anything about him, but they wouldn't interfere with him too much, and when they saw him anxiously walking to the door, they greeted him casually like a neighbor: Uncle Lin, where are you going? He will keep saying that he wants to go to Wangjing.

In fact, it is because his wife will always take him there to go shopping before his death, so for him, if he finds "Wangjing", he can also find his wife.

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Grandma Wang and Grandpa Lu

In order to take care of their sick spouses, some healthy elderly people will also choose to live in. For example, Grandma Wang and Grandpa Lu, Uncle Lu is 91 years old, and his energy and physical strength can't keep up, 3 years ago, they came to Beijing from Chongqing to take care of their daughter. After Grandma Wang moved in, Grandpa Lu also moved in.

Grandma Wang likes to sit quietly and doesn't like group activities, so Grandpa Lu is by the side. No matter where two people go and do anything, they hold hands. He proudly introduces his wife, who was once a good athlete and has published many articles in newspapers.

He admired her, but he also felt aggrieved for his wife, a person who had made so many contributions, why is he sick now? But Grandpa Lu also knows that his wife still has feelings, because she recognizes herself and relies on herself.

I often emphasize to people that whether they have dementia or not, they always have the same emotional needs as we do, and they are flesh and blood people.

I know that no matter how professional and meticulous the care here is, it cannot replace the love of my loved ones. So it's very open, no need to make an appointment, no need to say hello, anyone can easily walk in here at any time, and the family is like going back to their parents' home, very casual.

But even if the family sends the elderly in, they are still very anxious, for example, many problems may be commonplace, the elderly do not sleep well, they will feel that something is wrong, whether to prescribe better medicine.

This anxiety can also turn into a form of guilt. They feel that their parents are the most difficult in the world, completely fine, and at the same time they are very worried, trapping themselves in traditional thinking, and feeling that they are unfilial.

Later, my family and I created the "Seahorse Memory Workshop", which is held three times a week, and as long as the family members are free, they can come here to do handicrafts, embroidery, and calligraphy with the elderly...... In this way, the parents are accompanied, and the children can live their own lives with more peace of mind.

I want family members to be the last witnesses of their parents' lives, not bystanders.

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New Fangshan Senior Apartment, with café and bar counter, the space and society are integrated

Elderly people with dementia will face a slow deterioration of cognitive ability, and their memory and calculation ability will decline. They need to exercise. But I've talked to a lot of elderly people with mild symptoms, and they're actually very afraid that others will think they're not good and don't want to play with them, so they don't like to socialize.

Later, we introduced the game of "21 Poker" from abroad. Because everyone has a desire to win, this can motivate the old man to get involved. In the game, the elderly can communicate with the people around them, and they can also exercise their cognition through calculation.

In fact, making this game was also an inspiration from an old man. It turned out that there was an old man with dementia, he used to be a professor in the mathematics department of a university, and once I took a notebook of a primary school student's calculation problems, and I said professor, you come and do the math. The old man was originally very gentle, but when he saw those questions, he suddenly began to curse, and he was very angry, and threw his notebook on the table and said, This is a fool's thing.

Since then, he has been very irritable, and he has not been able to relieve it for several days. That's when I realized the problem, we had good intentions, but for him, it was an insult.

In the 21 game, we will not ask the specific addition and subtraction, but the cards will be asked, you look at your cards, think about how many points away from 21 points? induce him to calculate, it doesn't matter if he calculates slowly, we wait for him. And because this is a game, not an exam, it doesn't matter if you make a mistake, the old man is very relaxed.

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Old people sit together and play the piano

In addition, in order to give the elderly with dementia a sense of accomplishment, I also introduced music therapy.

It was a guitar-like instrument, but with simplified strings. We use different colors to mark the score, and the old man can play different music by plucking different strings, these are all "tools", even if he doesn't know the instrument at all, he can play it quickly, he will feel that he is okay, he will be confident.

This year, I also started another senior apartment in Fangshan, Beijing. A financial park was deliberately chosen, next to the office space for young people, and a café and a bar bar were opened on the first floor of the lobby. I hope that the whole space can be integrated with society.

Young people can casually walk into the living space of the elderly, and the elderly can also participate in the operation of cafes and bars, they can do simple jobs, collect money, work as waiters, and even misuse American and cappuccino...... None of this matters.

When the elderly have time, they can also sit and drink a glass of red wine and tell the guests stories of their youth, so that they can always feel that they are still part of society.

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A flea market is opened once a month where the elderly can shop

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Seniors can use vouchers to make purchases

In the "Seahorse Memory Workshop", the elderly handmade a lot of eco-friendly bags, which we will donate to Hope Primary School, and the children who receive the bags will write to the elderly, and the elderly will also feel that they can help others, and they can also be taxpayers at the age of 90, not only the people who are cared for, but also a useful person to the society.

Sometimes the old people would ask me, where did they go after making so many environmental protection bags? Why don't I have any money? Later, I decided to give the old people a "salary", that is, "vouchers". Every month, there is a supermarket or "flea market" in the lobby of the apartment, selling some soap, toothbrushes, and snacks.

The old people are very devoted, and they will pull their children and proudly say, "Whatever you want, I'll buy it for you." Sometimes I would bargain with the staff, "You see there's not much left in the end, can you give me a cheaper?" Actually, this is also the atmosphere I want to create for the elderly, because this is their daily life, and this is also part of continuing their socialization.

We can't deny that dementia is a disease, but in the face of the disease, we must first see the "big people" behind it, who just have a small disease. They won't have a lot and will forget a lot, but we don't know everything either, and we forget too. But we can help him, respect him, be a part of his memory, and that's enough.