I will also patiently listen, Alzheimer's Family Mutual Aid Association: Even if you say it 100 times

Seeing Liu Shuduan sitting at one end of the long table, Wang Qianwen walked forward and patted his shoulder, saying, "Your punch last time was very powerful, it made me see stars in my eyes. After all, it was practiced!"

Uncle Liu turned his head and grinned at her. He, who suffers from Alzheimer's disease, no longer remembers whether he had played boxing with Wang Qianwen or why he wanted to hit her. However, Wang Qianwen took the initiative to smile and talk to him, which made him very happy.

Wang Qianwen is a family volunteer of the Love Mi Li Cognitive Disorder Mutual Aid Association. On the third Saturday of each month, which is the activity day of the mutual aid association, she will arrange to take care of her mother without hesitation and participate, sharing with others the "gentle and cruel" daily life of cognitive impairment family members.

When it comes to martial arts during that event exchange, Uncle Liu didn't remember practicing martial arts before, but he felt familiar with it, so he asked me to teach him. Before he could finish speaking, he aimed a heavy punch at my chin, hahaha. Uncle Liu, like my mother, always remembers the skills he is good at. My mother can still proficiently calculate '24 o'clock' until now, but she doesn't recognize me anymore“

Wang Qianwen's mother, who is in her 80s, is a severe Alzheimer's patient, and Lin Shuying, the founder of the Love Millet Cognitive Association, is also a family member of a cognitive disorder patient.

"Alzheimer's disease is a competition between remembering and forgetting. As a family member, the most painful thing is that they are still there, but they forget about you." In 2018, as a family member, Lin Shuying launched the Love Millet Cognitive Disorder Family Mutual Aid Association, which was the first cognitive disorder family mutual aid group initiated in Shanghai as a family member.

Over the years, Lin Shuying and these family members have spent long dark nights together. "Cognitive disorders like Alzheimer's disease may be largely controlled not only by patients and medications, but also by caregivers' effective responses."

No matter what behavior you do, be gentle and tolerant

Since her mother was diagnosed with cognitive impairment, Lin Shuying's life has suddenly changed. The eraser mercilessly erases her mother's memories, and her former mother seems to no longer exist. After a busy day, Lin Shuying had to face a house full of smashed things and her father's complaints when she returned home. At one point, she became irritable and anxious.

"Caregivers are really important, and many conflicts arise because you haven't put yourself on a normal track, which often backfires." Lin Shuying recalled, "For a long time since my mother was diagnosed, I was very anxious. After constantly learning, exploring coping methods, and breaking through the bottleneck, I found that I could actually live in harmony with the illness."

She wants to share her insights and experiences with more people. With the encouragement and support of Professor Tang Bin, who is involved in the charity of Jianai, we quickly initiated the establishment of the Ai Mi Li Cognitive Disorder Family Mutual Aid Association as family members.

It takes courage for family members to adjust and adapt to life after being diagnosed. Due to the various symptoms of dementia in patients, patients and their families will avoid mentioning this disease, let alone joining such activity groups.

Grandma Tian, who used to stand on the three foot podium, began to speak incoherently, her logic was chaotic, and her daughter wrote her name and phone number on walls and notebooks. However, the probability of Grandma Tian being able to remember this information was zero. After being diagnosed with Alzheimer's disease, her daughter obtained information from the Love Charity and brought her mother to the event site of the Love Rice Mutual Aid Association.

"At first, I didn't dare to lie to her. I told her that she was very reluctant to participate in activities with other patients." My daughter finally dragged Granny Tian to come. In just over two hours, Granny Tian went from resisting and tense to relaxing and smiling, and finally reluctantly hugged and said goodbye to everyone here, saying she would come again next time.

The mutual aid association once had the opportunity to invite Fudan club students to participate in summer family companionship. I heard that someone was coming to visit, but the patient didn't fall asleep all night. The family became very nervous and called to refuse, saying, "Don't come, my dad is afraid of meeting strangers." Lin Shuying convinced the family to try again, but later it proved that they were too worried. That day, when the old man saw a young student, he was so happy that he even dug out a cherished old photo from the box, and his past memories seemed to have come back. Students from the Mutual Aid Association and Fudan Tuoke Club also shared this "Youyoudan" project for elderly people with cognitive impairment.

Chair fitness exercise

Compared to a sense of shame, there is also a fear of the unknown about Alzheimer's disease. A family member at the mutual aid association expressed their concern: "My family is clamoring to take a bank card to withdraw money, should I give it to him? If I deceive him into giving him a fake card and he goes to the bank and finds it to be fake, will he kill me?" The people present gave him advice one after another, "You shouldn't give him a bank card.".

Many family members of patients face varying degrees of anxiety and helplessness in the initial stage of care. The mutual aid association has professional social workers who support charity work, and professional doctors from the Jingwei Center provide lectures and explanations for everyone. "If he is at home, he dares not make decisions, but here, he is not facing it alone. There are experts, volunteers, and family members around to help him make decisions, which makes him feel a little more at ease."

Some family members are afraid to bring patients here for the first time, fearing that their emotions will lose control. They sat in the corner secretly observing and found that the atmosphere here was warm and relaxed. When family members talked about trivial and unbearable things, everyone patiently listened. When patients acted, everyone gently accepted, "As long as it's not too manic, it's not a problem for us. Even if you say it 100 times, it's nothing, and we will patiently listen to you finish.".

Someone let go of their guard and ran over to tell Lin Shuying, "You are the initiator of the mutual aid association and also a patient's family member. We are in the same situation, and we feel a deep acceptance here. You understand us the most."

You don't understand the world of an old child

Fujia is a regular member of the Love Mi Li Mutual Aid Association. After his father in his 70s was diagnosed, his family's life suddenly became chaotic. After careful consideration, Fujia decided to resign and focus on taking care of his father. "Dad walks trembling and struggles to speak. If he listens with his ears, his mouth won't keep up. If he talks, his ears won't keep up, and Mom can't take care of her alone. Recently, her right hand needs surgery again."

Handmade Mid Autumn Festival mooncakes

Last Saturday's mutual aid club, senior caregiver family member Yuan Mama led everyone to make Mid Autumn Festival mooncakes. Fujia brought his parents with him, and his mother opened the conversation box: "If my daughter says a few words to me, the old man will be very happy. If I scold the old man a few words, his face will immediately collapse. If he is not happy, he will ignore you. If you want to go and comfort him, he is just an old child."

Seeing the old child enjoying the mooncakes she had made with her own hands, Fujia's mother smiled on her face. The old child is very happy every time he participates in activities, making fans and playing puzzles, and his hands and feet are much more coordinated than before. "Last time I went to the restaurant, I couldn't forget to ask him to be a waiter and give someone else a water glass. He was so happy and worked very hard."

Old children actually make family members worry less. At night, the elderly often wake up and squat on the toilet for half an hour or an hour, only willing to leave the toilet after urinating. Returning to bed, after only an hour, she got up again. Fujia's mother kept tinkering and saying, "Sometimes I tell the old man that you're taking care of our bathroom, and he keeps laughing foolishly.".

The old Gu on the side felt the same way, and his wife has been suffering from illness since 2015. Once, my wife trembled in the middle of the night, curled up in a ball, stomped her feet wildly, and frequently used the restroom. "It was found to be mild cognitive impairment, with a total score of 30 points. She scored 22 points."

Patients and family members encourage and encourage each other.

Lao Gu's wife started picking up garbage everywhere. On the way, she saw discarded plastic bottles and paper boxes and picked them up like treasures to take home. The old lady was worried that the money at home would be stolen, so she hid it. First, she hid it in a box, then placed it under the sofa coffee table, and finally stuffed it into a hole under the bathroom bathtub. The old lady carried a basket to the market to buy groceries. She thought she was still living in an era where one yuan could buy a lot of small dishes. When she saw the vegetable vendor offering an astonishing "high price," she felt like she was being "killed." She threw away the basket and started scolding the vendor

My wife's condition worsened day by day. After falling, she didn't go to the market and didn't know Lao Gu anymore. Old Gu, who was taken care of by his wife in the past, has a lot of pressure on his shoulders to take care of his wife. Not long after the establishment of the mutual aid association in 2018, Lao Gu dragged his lover to participate in the association's activities. "At first, she wasn't happy to come and told her she could have a free meal, so she followed along.".

Last year, Lao Gu underwent a major surgery and suffered a severe injury. He couldn't take care of his wife anymore and had to send her to a nursing home. "A while ago, I went to see her and she didn't know me. After the caregiver told her my identity, she said she wanted to go home with me. I'm really sad, so sad, but there's nothing I can do."

When Lao Gu said this, he lowered his head and remained silent. Someone walked over and patted his shoulder, while someone gave him a big hug. Lao Gu felt too bitter and buried too much in his heart. He needed to speak up, and the friendly acceptance atmosphere of the Mutual Aid Association brought him great comfort.

"Everyone is burdened with unimaginable pressure, and each of us here has a desire to survive in the cracks. They can speak it out, which is a kind of breathing, a kind of release, and also a kind of relief for patients." Lin Shuying said.

I reconciled with myself

"When grandma's soul enters eternal night, she seems to sink with her whole family," said Xiaomin. Grandma used to be a respectable little old lady who would use a wooden comb dipped in water to make her hair shiny and smooth in the morning. After being diagnosed, everything changed. "At first, she was easy to forget things, but later she smelled and smelled in the room. She wanted to cover up the dilemma of incontinence, hid her eyes and acted carefully. Gradually, she forgot who she was, resisted our approach, and thought we wanted to kill her. She screamed in the middle of the night, called out to fight with demons and ghosts, and smashed other people's windows with glass."

The decline of physical function, the decline of mental memory, and the loss of personal dignity make it difficult for patients to escape, and also make caregivers lose patience and confidence. A report by the World Health Organization once pointed out that when a family member is diagnosed with Alzheimer's disease, their care provider can easily become the second patient.

One function of mutual support in mutual aid societies is to help family members face problems directly. Someone confides in themselves that the process of taking care of someone is both cruel and lengthy. Sometimes, the despair and helplessness seem to slowly surround and wrap around their throat, as if they are being choked tightly, unable to escape.

Someone peeled open their bottom and saw the bright colors of life in it. "First, there was a feeling of being suspended and having no one to rely on, and then there was a feeling of recovery. Because of how you are, the patient will recover." Wang Qianwen felt the most about this. My mother has always wanted a boy, but her growth is neglected and distant. But after being diagnosed, the mother daughter relationship became intimate. The support of the mutual aid association accompanied her, allowing her to have a better attitude towards her mother. In the dense care, she deepened her connection with her mother. "My mother is now very dependent on me, and sometimes she suddenly regains her memory and calls me the first time she picks up the phone."

Many of the patient's family members are single, and because their family members have been diagnosed, some are even more afraid to start a family. But some people also have confidence in building a family because of this caregiving experience. A little sisters with a nursing history of nearly ten years shared her change: at first, her family took her grandfather everywhere for medical treatment, spent a lot of money, was hospitalized, took medicine, and took turns to accompany her. I thought there was no filial son in front of my long bed, and everyone would shift blame to each other. I often ask myself at night, why did I encounter him? But it was during this day after day of companionship that I reconciled with myself and my family. Although my grandfather still can't remember everyone, his face is always filled with a smile, and the family has become more harmonious. Previously, he didn't express his love very much, but now he knows how to show love. With just a glance and a hug, the fatigue and gloom of the day are swept away. This may also be a kind of harvest.

There is a man in his 40s in the mutual aid club. His mother suffers from severe cognitive impairment and clamors to go out for a walk at night. He always accompanies her out in the middle of the night, walking back and forth on the long street until her mother is tired before returning home. Later, he resigned from his job and focused on accompanying and taking care of his mother until her death. "Nowadays, he still shares his knowledge and daily experiences in this group, which has become a part of his life."

Lin Shuying is teaching patients hand stroke exercises

Nowadays, there are more than 250 family members of patients in the Ai Mi Li Mutual Aid Association group. They take the patients to do hand exercises, make green balls, egg tarts, mooncakes, draw, punch, and sweater together, share poetry and books, conduct family visits and group learning together, and some family members even form pairs. If someone's home is inconvenient, the family members of the patients will help take care of them for half a day, becoming a family.

"You see, the old lady who used to be reserved and unsmiling now comes up to embrace you generously. Uncle Yang, who used to have some rice grains stuck on his clothes, seems to have changed and dresses neatly every time he comes; Uncle Liu, who used to be quiet, has now become a 'talkative' and talks to everyone."

Speaking of this, Lin Shuying had a special feeling, "This breakthrough has greatly changed me. I think we can share these experiences with more families in need of cognitive impairment, extend this power, and continue to have the courage to move forward."

This reminded her of Woolf's words: face life, always face life, understand its true meaning, always understand, love its essence, and then give up on it.