Linking up isolated islands with Alzheimer's disease, "Caring for Tea Houses": Destined Difficulty on the Road
At the long table at the tea house gathering, the first thing Ye Lifen did was cry.
She is 55 years old this year and the subject of the complaint is her husband. That morning, her husband slapped her without any reason or warning.
A year ago, Yelifen's husband was diagnosed with Alzheimer's disease. Every day after that, his memories kept decreasing, he forgot who he was, lost his ability to take care of himself, and became irritable. Ye Lifen took on all of this, from drinking water and feeding to wiping herself and washing herself, supporting every aspect of her husband's daily life in every detail.
But when this breathless effort was exchanged for a loud slap, the weak woman who had been gritting her teeth for a long time could no longer resist. "I really can't figure out why he treated me like this?" She burst into tears.
Depression and grievance are common emotional traps faced by caregivers of cognitive impairment patients, including Alzheimer's disease. They are a persistent, one-way injury and pain that cannot be ignored but truly exists.
In front of outsiders, Ye Lifen is always strong and strives to be optimistic and upward. Only in "taking care of the teahouse" will she take off her mask, spread out her helplessness and grievances, and seek the resonance and help of everyone.
The "Care Tea House" is not a physical tea house, but a social place specifically designed for the families and caregivers of cognitive impairment patients. Every month, everyone gathers together to discuss the difficulties encountered in the care process, seek solutions, pour out bitter water, relieve the tense pressure, and catch their breath. To put it in the words of Gu Chunling, founder of Shanghai Perfect Elderly Service Center and founder of "Care Tea House", this is a story of a group of "difficult friends" huddled together to warm up, encourage each other, and become "comrades" on the road of caring for patients with cognitive impairment.
Before the arrival of World Alzheimer's Day on September 21st, reporters approached them.
Empiricism Tea House
In 2008, Wang Damin discovered something was wrong with his wife while traveling after retirement. When his wife went downstairs to pick up the hotel room card, he didn't come back for a long time. Wang Damin searched around for a long time, only to find that his wife was standing in the lobby of the hotel and couldn't find the room. After returning, his wife was diagnosed with Alzheimer's disease, and she was under 60 years old at the time. Wang Damin is now the head shopkeeper of the "Care Tea House".
According to the international prevalence of cognitive impairment, which accounts for about 4% of the elderly population, there are approximately 300000 elderly people with cognitive impairment in Shanghai. Among different categories of cognitive disorders, Alzheimer's disease is the most common, accounting for up to 50-60%. In the current medical community, this is a deadly disease with unknown etiology and complete irreversibility.
In patients, cognitive impairment causes brain atrophy and intellectual decline, making it impossible for them to take responsibility for their own lives. For caregivers, this means uninterrupted and attentive care 24 hours a day, endless response to emerging new problems and the deteriorating cognitive status of patients. For both sides, this is a known difficult downhill path.
However, sober people always bear a double burden of pain and pressure.
Before retirement, Wang Damin was a senior executive in a company who had to travel for years due to work needs. He relied on his wife to take care of all the small and large matters at home, and to a large extent, he was the "hands free" character in the family. According to Wang Damin's recollection, during the initial period of taking care of his wife, helplessness, fatigue, collapse, and depression filled all of his life.
My wife only remembers her appearance as a girl, and when she looks in the mirror at her old age, she often gets scared and asks Wang Damin: Who is this old lady and why is she at my house? But she found it difficult to understand her husband's explanation, so she could only get even angrier and then punch the mirror.
Wang Damin finds it difficult to sleep well at night, and his wife will suddenly say, "Grandpa, cover up." But after tucking her in for five minutes, she will repeat the same script until dawn.
Cognitive impairment patients need to communicate with the outside world. Sometimes, Wang Damin takes his wife to a distant place to relax, but in taxis, his wife will argue with the driver for no reason, say a word that doesn't agree, and always spit. Wang Damin can only cover his wife's mouth to apologize and compensate. Please forgive the driver. At this moment, feelings of embarrassment and pain multiply, and Wang Damin often feels helpless: "Who can help me? How should I deal with my wife's needs and behaviors?"
After 5 years of helplessness, Wang Damin found the Shanghai Jingmei Elderly Service Center, where there were classrooms specifically designed for caregivers with cognitive impairment. Doctors and full-time caregivers taught them how to properly take care of the daily lives of patients.
Wang Damin admitted that initially, the course brought a lot of inspiration, but over the years of caring for patients with cognitive impairment, the limited course content was difficult to cover the new needs of his wife's infinite extension. He hopes to have a dialogue with more caregivers, transforming the one-way output of doctors and experts into a salon discussion among the parties involved, providing each other with experience, and finding sustainable solutions to the constantly emerging new problems in the care process.
At that time, Gu Chunling introduced international concepts and opened the first "Memory Cafe" in the Yangjing community of Pudong. She hoped that Chinese families could gather in a relaxed atmosphere like abroad, discuss the patient's condition together, and share the suppressed emotions during the care process with each other.
After encountering so many families of patients with cognitive impairment, Gu Chunling could clearly feel that many of their families faced varying degrees of fear and helplessness in the initial stage of care, and during the process of care, they carried unimaginable pressure.
Gu Chunling once visited a middle-aged and elderly male caregiver. He had a booklet that detailed the daily changes of his wife since she fell ill. One page read, "Today is my wife's first time with urinary incontinence. What should I do in the future?" The question mark was pressed hard, and the last line was written through the back of the paper.
She hopes to provide them with a social platform to support each other and exchange experiences. And she gradually realized that they were the ones who understood the needs of their families the most. Why can't family members decide what to discuss on their own? So in 2020, Wang Damin and Gu Chunling hit it off and, on the basis of continuing the concept of "Memory Cafe" abroad, created a local characteristic cognitive disorder family mutual assistance platform: Care Tea House. After all, tea houses are lively and full of gossip. People come here for entertainment and stress relief. In the care teahouse, family members are both shopkeepers and tea guests, sharing various care information, which is also a way for caregivers of cognitive impairment patients to catch their breath.
Wang Damin is taking care of the tea house and communicating with everyone
The panting of caregivers
Confirmed patients with Alzheimer's disease generally have a remaining lifespan of 5-10 years. Wang Damin's wife has extended this period to 15 years. But he always regrets, "Actually, my wife's condition can still be better."
At the monthly salon of "Care Tea House", 30-50 caregivers will discuss one or two small topics, such as "what to do if you don't want to drink water", "what to do if you don't want to brush your teeth"... They can always talk for a few hours about ordinary topics.
Every time in the salon, "Chief Shopkeeper" Wang Damin is always the first to speak. He tells how he trained his wife to get up through the news broadcast, and how he sang the theme song "Pleasant Goat" to coax her to brush her teeth. How he was so angry with his wife that he had no choice. Resonance opens up the conversation for everyone. Experienced individuals share their "tricks", while beginners strive to take notes and also raise new questions, becoming another topic on the salon.
The collision and exchange of experiences have saved caregivers a lot of detours. Wang Damin gave an example. Initially, although his wife still had the ability to eat independently, he always fed to ensure that she received sufficient nutrition. Over time, the wife's ability to perform this task deteriorates rapidly, and her cognitive status also decreases accordingly. It was only after being informed by other caregivers that he realized that cognitive impairment patients should exercise their autonomy as much as possible.
Another significance of "caring for teahouses" is to make caregivers pay more attention to themselves. Gu Chunling said that in response to the 24-hour uninterrupted care needs of patients with cognitive impairment, caregivers often need to sacrifice their social and personal lives, and take care of the patient's unpredictable emotions. However, the negative emotions accumulated in their hearts are often overlooked.
According to the 2022 World Alzheimer's Report, 54% of family members and caregivers reported feeling stressed almost "consistently" or "frequently". Research has shown that this increases the risk of caregivers developing cognitive impairment several times higher than the general population.
"We have always told caregivers that only when you are good, can the patient be better." Gu Chunling hopes that at the round table of the "Care Tea House," everyone can also use "me" as the subject to narrate. So, there are often many caregivers like Ye Lifen who come up and cry bitterly, expressing their heartfelt feelings and full of grievances.
On the day Ye Lifen recounted, an experienced caregiver conducted a thorough analysis of her "beating" and came to the conclusion that perhaps, in the early morning of that day, Ye Lifen's husband got up and went to the bathroom on his own. Because he didn't want to wake his wife up to sleep, he didn't go back to the room immediately. Instead, he sat in the living room waiting for her to wake up. The weather was too cold, and he waited uncomfortable and couldn't express himself. In the end, he beat her because he was in a hurry. "Although the expression is incorrect, the starting point is to love you."
Of course, no one can truly know what Ye Lifen's husband is thinking, but caregivers still hope to release her in a warm way. Essentially, this is a form of "huddling together to keep warm". The members who take care of the tea house are aware that the situation at Ye Lifen's house can happen to them at any time, and because they share the same situation, they are particularly able to empathize with her grievances.
Take care of the daily activities of the tea house
A dignified old age as much as possible
Gu Chunling's grandmother passed away due to Alzheimer's disease. In the first two years of the illness, people simply believed that it was due to getting older, becoming confused, and not intervening in a timely manner. It was not until her grandmother's condition worsened that her family took her to the hospital for examination and diagnosis. Due to a lack of understanding of cognitive impairment, the family's care for their grandmother is largely problematic. The condition deteriorates quickly, and the grandmother walks in great pain, along with the caregivers, all of whom are suffering.
The 2022 World Alzheimer's Report shows that currently, up to 85% of dementia patients have not received standardized diagnostic support services. Usually, due to various symptoms of dementia in patients, patients and their families avoid mentioning this disease.
A family member of Gu Chunling's patient repeatedly warned before her doorstep service, "Don't wear 'perfect' clothes, don't say hello at the door and come in quietly. I don't want my neighbors to know that my husband has dementia."
The shame of illness is a more severe challenge than the disease itself. They block themselves and find it difficult to obtain necessary information such as community elderly care resources, care concepts, skills, medication, or care products, leading to isolation and helplessness.
The "Care Tea House" aims to break the "atomization" of patient families. "Here, everyone is in the same situation, and no one understands the pain we are experiencing better than us. I hope they can bravely take that step and stand together to face it," said Gu Chunling.
In "Caring for the Tea House," there are not only tears of bitter hatred, but also laughter and joy. Not long ago, the "Tea House" organized family members to participate in the "Dance in the Present" dance healing activity with the elderly. This activity originated from the Scottish Ballet, and research has shown that dancing with elderly Alzheimer's patients and their family caregivers by retired dancers can improve their condition. So, the teahouse invited eight groups of families to participate together.
One of them, an elderly man with cognitive impairment, suddenly sang a song called "The Wild Goose" under the influence of music and dance. The song was loud and beautiful, and other caregivers danced around him, taking him as the center. Uncle's wife found out that her husband hadn't laughed so happily for a long time.
"We all know that this disease is irreversible, but we still hope that patients and their caregivers can have a happy and dignified life as much as possible on the road that is destined to get worse and worse," said Gu Chunling.
Embracing at the Care Tea House Activity Site
