from a daughter to a "mom's mom" is the only option in my life after my mother was diagnosed with alzheimer's disease

from being a daughter to being a "mom's mom" is the only option in my life after my mother was diagnosed with alzheimer's disease

2024-09-21

xiaoqing (pseudonym)my mother was diagnosed with alzheimer's disease two years ago.at the beginning of last year, because of her mother's illness, she returned to her hometown and rented a small courtyard to take care of her mother.now i live in my favorite city in the south, enjoying a slow-paced life.

xiaoqing is 36 years old, unmarried and childless. she has no experience in caring for patients or children. she can only keep learning and exploring. using her previous experience of overcoming anxiety and depression, she developed a cognitive training plan for her mother (drug and non-drug interventions are carried out simultaneously).

over the past few months, there have been pain and occasional laughter; i have experienced countless collapses, but also seen some difficult progress.

september 21st of every year is world alzheimer's day. in recent years, the trend of "younger" age-related diseases has become a trend, and alzheimer's disease is no exception. xiaoqing's story is also a story that more and more people born in the 1980s and even the 1990s have to experience.

the following is xiaoqing’s own account.

the names of the interviewees in this article are pseudonyms.

written by: xuezhu, linlin

my mother is 60 years old this year. she was diagnosed with alzheimer's disease two years ago. it is early-onset alzheimer's disease, which means that people develop the disease before the age of 65. it is not rare. i learned from the patient's family group that many people developed the disease in their 50s.

in my opinion, my mother started to show signs of illness after she retired. i was not at home at the time, but i heard from my family that she didn't like to go out, didn't like to eat, and would think a lot and was very emotional.

her family took her to the city hospital (a city in hebei province) for treatment. she had a ct scan and various tests, all of which were normal, including no cerebellar atrophy. the doctor only diagnosed her with anxiety and prescribed some medicine for her.we thought her poor condition was caused by her emotions, but when she showed symptoms of alzheimer's disease, it was too late and the treatment was missed.

i later learned that one of the early symptoms of alzheimer's disease is anxiety and depression. there are many cases in the patient family group i joined, all of which were misdiagnosed as depression or depression at the beginning. after a few years, the patient began to have hallucinations or lost his way. at this time, there is no need to go to the hospital, because everyone knows what the disease is.

the disease has an insidious onset and is difficult to diagnose before symptoms occur.i have seen a statement that certain proteins begin to deposit in the cerebral cortex ten or fifteen years before symptoms occur.

when the family discovered the problem, my mother had no concept of time and place, had a bad memory, repeatedly folded clothes, and had delusions. my family took her to a specialist hospital in the city, where she was hospitalized for more than a week and underwent various tests to rule out other diseases.

brain mri showed atrophy of the hippocampus. she could not recognize a watch or calculate. she was diagnosed with depression and dementia, but at that time she already had moderate alzheimer's disease.

the gold standard for diagnosing alzheimer's disease is pet or lumbar puncture of cerebrospinal fluid, but many hospitals do not have these tests, and the cost is very high. i read the information and know that alzheimer's disease is a global problem. the specific cause of the disease is unclear. there is currently no cure. the treatment is just to delay the onset of the disease. there are only a few types of drugs, such as aricept (a domestic drug calleddonepezil), memantine, etc.

at that time, the hospital in my hometown did not have the drug memantine, so we went to beijing to see a doctor. some hospitals have special memory clinics to diagnose alzheimer's disease. if there is no memory clinic, you can find a doctor in the neurology department who studies this field.

during the process of seeing a doctor and adjusting medicine, family members are also required to conduct various dialectical analysis and learn.one thing i am very grateful to the doctor at beijing xuanwu hospital is that when my mother was treated in my hometown, the doctor prescribed her several psychiatric drugs because she would cry and collapse. after going to so many hospitals, only the doctor at xuanwu hospital told me, "it seems that your mother has taken too many psychiatric drugs," and reduced the amount of these drugs for my mother.

she became much more sober, not as dull as before, and had a stronger desire to speak.

before my mother got sick, i was preparing to go to the south to live a slow-paced life and had already rented a house. just when i was about to start a relatively relaxed life mode, there was suddenly such a big turn. life is really like a drama.

my mother used to be very smart, but now that she is sick she can only figure out how many plus one equals how many, and she can't do any more difficult calculations. she doesn't recognize herself in the mirror and always says someone is following her.

this is due to the degeneration of brain nerves, and she has developed personal orientation disorder.i have covered up all the mirrors in my house, but reflections are inevitable. there is really nothing you can do about it in modern society, as there is glass everywhere.

my mother is timid to begin with, and now she is very scared when she sees the person in the mirror. i explain to her the principle of reflection, and tell her that the person in the mirror is her, "look at the color of clothes you are wearing, is the person in the mirror also wearing the same color?" "look, i wave my hand, and the person in the mirror also waves back at me." she will ask "is this really me?" "why is she smiling at me?"

i explained to her, but often felt like she wasn't listening.in fact, it’s not that she can’t listen, but her brain can no longer understand these things.the fact that things worked out was because she trusted me.

sometimes i would say to her, "mom, i'm here, don't be afraid," and she might smile and not be so nervous. but if i wasn't there, she might stare at the mirror by herself, getting angrier and angrier, and then she would get stuck and unable to get out.

she started hallucinating and making up stories, so i just followed what she said and asked her where she met someone and who she met, and i roughly knew what age she had returned to.

she often returns to her childhood and to her parents. once she cried very sadly, saying that her mother didn't want her anymore and ignored her. at this time, i asked her "who is the most important?" like a brainwashing slogan, and then told her "you are the most important" and "being happy every day is the most important."

i would also do something to divert her attention, such as cleaning her ears, applying facial masks, etc.sometimes it works, and she gets better after cleaning her ears; sometimes it doesn't, and she remembers it again after cleaning. this makes the caregiver very nervous, because you don't know when her hallucinations will come out.

sometimes she would break down and cry, her emotions were completely out of control, and she would even hurt others. when i first took her to my home at the time, she broke down for ten consecutive days. it wasn't that she broke down 24 hours a day, but after i finally pulled her out of her emotions and diverted her attention, she would soon go back to her feelings.

alzheimer's patients are particularly sensitive to the environment, and unfamiliar environments are a stimulus to them.during that time, she always urinated frequently. i later found out from the information that it was because of nervousness. she was not used to it and missed home and my brother. so, i had to go back.

i went back to my hometown and rented a small courtyard. patients with this disease often make noises and want to go out, and having a small courtyard can relieve some of their anxiety. during the day, my brother would bring my mother here and pick her up at night.

my younger brother has been taking care of me before. he has children, elderly parents and young children. his mid-life crisis came early and he has a heavy burden. i am single and don't have another family to take care of.

patients with this disease need a team to care for them around the clock. one person cannot do it alone, as it is too easy for one person to collapse.

for us caregivers, we are not dealing with one person, but several people. when my mother is awake, i have to deal with her as she is now. when she has hallucinations and sees my grandmother again, i have to deal with her as a child. when she is caught up in her own emotions, breaks down, and cries non-stop, i am dealing with a mental patient.

she is often in between lucidity and unconsciousness. i think she is more insightful than before, like a philosopher.she would ask my cat, “why did you come to the human world?” i would chat with her about some feminine topics, and she would be able to break free from the limitations of the era in which she grew up.

in fact, excluding the times when she was crying and broke down, i think this might be a stage in her life when she is more clear-headed and can truly let herself go.

my mother sometimes says, "they say i have this or that disease." i guess she must have known what disease she had before, but she is just slowly forgetting about it. i think it's acceptable, there's no need to force her to remember what disease she has.

when she was conscious, she once told me that she didn't want to live anymore. she might not be able to accept that she had this disease. i told her now that she had memory impairment. i also said that my memory was not good, so we should exercise our memory.

i took my mother to do various cognitive training.i know that this disease has not been conquered yet, and the overall trend is going downhill, and its development process is irreversible. at this stage, in addition to taking medicine, i am trying to slow down her brain decline through some exercises.

at first, i was completely confused, so i tried every method i could think of. i had worked in some children's courses before, so i started by teaching children's thinking: my mother's cognitive state may be that of a two or three-year-old child, so what can i teach her in chinese? what can i teach her in mathematics?

every day i tried different methods, and sometimes it worked, sometimes it didn't. i bought some books on training concentration, such as asking my mother to draw lines following existing shapes. my mother couldn't do it, so i had to change the method to train her concentration. after searching for a long time, i found a wooden tetris puzzle, which worked well.

source: provided by the interviewee

i also bought checkers. i thought it was simple, just jumping every other card, but later i found that it didn't work. for my mother, playing cards are the best. i would draw a card and ask her if she knows the number or the pattern on it, or set up some simple games, such as comparing the size or asking her to sort.

my friends sent me toys that their children played with, and i tried them out one by one. i also designed various small games for my mother to play. my mother had a lot of fun playing with sandbags. this game can train her concentration because she has to aim when throwing, and it can also train her sense of space.

my friends all say that i work harder than before, and there’s nothing i can do about it.i work for survival, and now i am completely racing against life.

after almost 3 months, i think i have found some methods that she likes, and she has gradually shown progress. she can now remember what year it is, which she couldn't do before. now she knows what 3 plus 2 equals, and can recite multiplication formulas.

for patients with alzheimer's disease, it is important to develop habits. once diagnosed, you must start to cultivate some habits for her from now on, because in the later stages, her behavior will be more uncontrollable. if it is uncontrollable, you can only hope that her muscle memory will be used.

swipe up and down to see more.for methe cognitive training program my mother created, source: provided by the interviewee

every morning, after my brother brought her over, i would ask her to do two rounds of radio gymnastics, then practice tai chi for a while, and then coax her to go to the toilet.smooth urination and defecation is one of the things our patients' families care about most.

i packed her schedule every day so she wouldn't have time to think about random things. after morning exercise, i sang songs from her era with her. singing can relieve emotions and improve concentration. when preparing lunch, i asked her to help me pick and cut vegetables. it's important to let her participate in labor. after lunch break, we took a bath together.

many alzheimer's patients are reluctant to take a bath, so they can only think of various ways. my way is to take a bath together. when taking a bath, i will also do a verbal chain with her to train her ability to do two things at a time.

at around 4pm, i accompanied her to do square dance. on the way, i would ask her various questions, such as chinese, mathematics, and locations, etc., to exercise her attention in trivial time. after dancing, i asked her to communicate more with the aunts. social activities are also very important for patients and can also exercise her language skills.

after returning home, i would let my mother practice calligraphy, write in a diary, or play with toys or games. patients are prone to mood swings in the evening, so we need to use activities that require concentration to help her get through this period.

at around 7pm, my brother came to take her home. after my mother left, i read some information about the disease and exchanged experiences with the families of other patients in the wechat group. the experiences of the families of other patients are very valuable.

i will often praise her to make her feel happy.when she helps with housework, i say, "you're great!" "great!" she sometimes says, "you treat me like a child."

people of their generation are not very good at accepting compliments, and i have been influenced by them. i am not particularly good at accepting compliments either, and i will refuse when others compliment me. therefore, the process of accompanying her in cognitive training is to adjust her and myself.

i think on the one hand, i should treat the patient as an adult. i should not stop her from working just because she is sick, but should cultivate her execution ability. on the other hand, emotionally, i can no longer treat her as a mother, but as a daughter. i should take care of her and help her solve her problems.

i am a parent now.

after interacting with alzheimer's patients, i feel that this disease expands human nature.

if we were like this, we would be controlled by reason. when patients are happy, they will laugh, and when they are unhappy, they will cry and collapse. they cannot control themselves.

my mother never showed her love of dancing before she got sick. when i asked her to go to the park, she always said there were too many men downstairs and she didn't want to go. maybe she was afraid that she wouldn't dance well. now she doesn't care if she dances well or not, she just dances when she wants to. she can't remember the moves and can't keep up with others. she often improvises and dances whatever moves she thinks are suitable for the music.

i played some classical music for her at home, and she could feel what the music was trying to express and dance along. i think she at least has a sense for it, if not a talent. but she never insisted on dancing before, but now sometimes she would ask me in the morning, "are you still dancing today?"

on the other hand,the bad side of human nature is also brought to the fore.family members in the patient group have shared that some patients curse at others in an especially harsh way and even curse their family members.

my mother got lost a while ago. in the morning, her family found that she was not at home. she didn't know the way home anymore. if she went out by herself, she might never come back. fortunately, she was found later.

she explained to me that everyone was sleeping and she was embarrassed to wake them up, she just wanted to go out to buy breakfast for her family. she also said that my brother was angry and didn't talk to her. in fact, my brother was not angry with her, he was just scared.

don't underestimate her because she is an alzheimer's patient. she is very sensitive to emotions. she can't remember the reasons for things, but she can immediately feel that her family members are unhappy, and sometimes she even thinks too much.so, when you speak to her, you have to speak from your heart, and you have to believe that she can tell the difference.

my mother now wears a bracelet with her home address and contact information. i bought her a locator before, which she wore around her neck, but she didn't like it, so she changed to a locator watch. i often see in the patient family group that someone's patient is missing. one patient was missing in winter and was found after three days. his family was so scared that they were afraid he would freeze to death.

in the patient family group, everyone will exchange information about the condition of each patient. some people seek understanding from people with the same disease, some are completely broken-down and find it difficult to adjust their emotions without finding a place to talk, and some people will exchange information about medication.

i didn’t understand this disease at first, and when i saw the later stages - uncontrollable eating, drinking, defecating and urinating, my first reaction might be negative.after i learned what alzheimer's disease is, when others shared their experiences with me later, i was actually very grateful. i thanked them for telling me so many details so that i could be mentally prepared.

i received a lot of help from a patient's family. we met online. she was in a worse situation than me. her family's patient got sick earlier than my mother and was in a later stage than my mother. she kept helping me. i was able to get out of the bad stage, and a large part of it was thanks to her.

when i learned that my mother was ill, my first reaction was, “why my mother?” my focus is always on “why?” but these questions cannot be answered, this disease has not been conquered. if you ask, you will be trapped.

the biggest help she gave me was to tell me to accept it. now i don’t ask why for many problems, i accept them and then find ways to solve them.

the patient's problems are endless, leaving you no time to breathe, and each stage has its own problems. you have to find solutions and learn at all times. every level is difficult, but you can get through it.

to be honest, i am not a particularly smart person, but because of my mother's illness, i had to train myself to be smarter.

for a long time, i had a sense of "illness shame".

when i take my mom out and someone asks me about something, i can answer, “my mom has alzheimer’s disease.” i have no problem with that. but i’m afraid of people asking me, “why did she get this disease?” “why does she cry?” i also want to ask others, and i want to know why, but these questions have no answers. so, i’m afraid of people asking questions.

moreover, this disease disturbs others. when i was living in my previous residence, my mother started crying and breaking down on the street, and kept saying that she wanted to find her mother. i almost couldn't bring her home. i had no choice but to ask the neighbors for help, and then i brought her home.

when she got home she was still in a state of collapse.this was the time when i felt the strongest sense of "illness shame".

i saw those mentally ill patients in anding hospital, crying, cursing, and even hitting people. their family members stood by and did not dare to speak loudly. i felt very pitiful. in fact, i was similar to them.

alzheimer's disease is not just a decline in memory or a lack of memory about family members as shown in some movies and tv shows.in fact, patients are limited by brain neurodegenerative diseases and often cannot control themselves. they will yell, cry, and collapse.

if you encounter such an elderly person outside, i hope you can understand the experience of the patient and his family. the elderly person himself has no problem, it is only because of illness that he has these symptoms.

when my mom is around during the day, i am still able to fight. but when she leaves, i become paralyzed. sometimes, when my mom doesn't come over during the day, i will lie down at home for the whole day. this is completely meaningless and does not help me at all. i feel very uncomfortable lying down, but i don't have the energy to change.

i'm currently paying off my mortgage and spending my previous savings. my social security and other things have also been cut off, and i've applied for unemployment insurance. i had planned to take care of my mom while working part-time, but i really haven't had the energy to do anything else in the past few months.

i originally planned to take care of my mother for about a year, but now i want to postpone it for a while. i want to delay the arrival of the latter stage as much as possible. when she is incontinent and unconscious, i want to chat with her, but she won't respond to me. now we can still communicate.

every day now is definitely the time when my mother is in the best condition, and i don’t want to have any regrets.

a few years ago, i was working and living in another city. i had disagreements with my mother on marriage and love, and independence. i wondered if i had hurt her and accelerated her illness. i couldn't think too much about it. the more i thought about it, the more i would attack myself.

i went to the psychiatric department for a checkup, and none of the indicators such as brain function analysis and infrared thermal imaging were normal. i have been suffering from depression and anxiety, but fortunately, all the scales were normal. i will not go to extremes because i still have a patient to take care of.

i really hope that if you find that the mood or condition of the elderly in your family is different from before, you can take them to the hospital for relevant examinations as soon as possible, don't delay treatment, and don't be confused by emotional or mental problems.

if it is not misdiagnosed and can be diagnosed earlier, the quality of life of the patient and his family can be greatly improved. at least you can start taking medicine and non-drug intervention training earlier, which can delay the stage of self-care for a few years. even if it is delayed for 1 year, it will not be as painful for our family now.

a few days ago, my friend said that i was "pulling myself out of the mire", and what i pulled out was not my feet, but my head. i just pulled my head out and was able to breathe air.

this disease is so cruel that if there is a patient like this in the family, the whole family will completely collapse.

in the past few months, i didn't dare to see my friends. when my friends said they wanted to come and comfort me or send me gifts, i always said, "don't come. i'm afraid i can't hold it back when i see you." after i was able to digest it a little, i started to talk to them and started crying.

i am slowly accepting my current life and slowly rebuilding myself. i often tell people around me that i feel i have finished my previous life and am now living my next one.

after going through all this, i realized that alzheimer's disease is not just a family problem. our country has now entered an aging society, and in the future more and more families will face the same dilemma as mine. what should we do in the future? how should the country and society respond, including the issue of elderly care? all of us have to think about it.

li jingjing(professor and chief physician of department of neurology, beijing tiantan hospital)reviews：

first, to the interviewees of this articlexiaoqinglike it!

as the patient's daughter, she provided the patient with very humane companionship and care. at the same time, she helped the patient with cognitive training based on the development of the patient's condition and her own experience in training young children's thinking. these non-drug treatments and services for alzheimer's disease are very meaningful for improving the patient's quality of life and extending the patient's dignified life span.

alzheimer's disease (ad) is a progressive, slow degenerative neurological disorder that usually occurs in old age.with the acceleration of population aging, the number of ad patients is increasing rapidly. it is estimated that by 2050, the number of patients in the world will reach more than 100 million.

there are three major pathological features in the brains of ad patients: amyloid plaque deposition formed by the accumulation of β-amyloid protein (aβ), aggregation of highly phosphorylated microtubule-associated protein tau protein (p-tau) to form neurofibrillary tangles and neurodegeneration.

as our understanding of alzheimer's disease grows, the disease is now divided into three stages.

the three stages of alzheimer's disease

● stage 1: asymptomatic period

except for some abnormalities found in cerebrospinal fluid testing and pet examination, it is difficult to find pathological symptoms clinically.

● stage 2: mild cognitive impairment

cognitive functions such as memory will be slightly affected, but daily life will not be affected.

● stage 3: dementia

there are obvious impairments in memory, executive function, and attention, and life and social functions are significantly affected;

it is often accompanied by disorders of perception, behavior, thinking and mood, which not only have a negative impact on the patient's own life and mental state, but also increase the burden on the family and society.

note: the new guidelines for the diagnosis of alzheimer's disease will be launched before the end of 2023, and the stages will be divided into more detailed

in the case in this article, the interviewee specifically mentioned that due to emotional problems, the patient was initially diagnosed with depression, which delayed the early intervention of alzheimer's disease, which is also a problem that the family has always regretted.

indeed, the onset of alzheimer's disease is a process. its onset is often hidden, and early symptoms include memory loss, poor sense of direction, emotional and personality changes, decreased attention, and decreased social function.

this makes alzheimer's disease difficult to detect at the beginning, because symptoms such as memory loss and decreased attention are common among the elderly.

therefore, when the elderly show these early symptoms, they must be alert to whether it is alzheimer's disease. especially when they have depression symptoms, they must be especially careful.

so, how to distinguish whether the elderly have depression or alzheimer's disease? you can refer to the following points:

depression

artz

alzheimer's disease

mood changes

long-lasting depressive state

mood changes frequently and are out of control

smart changes

intellectual decline is temporary and partial

the damage is comprehensive, persistent and long-lasting

neurological symptoms

no neurological symptoms

accompanied by neurological symptoms and signs

memory

can be recalled with appropriate reminders

difficulty in alleviating forgetfulness through simple reminders, often answering questions irrelevantly

sense of direction

rarely get lost

in severe cases, the patient may lose his or her sense of direction and often get lost or wander off.

efficacy

after taking antidepressants for 2 to 3 weeks, depression will improve significantly.

the effect of medication is not obvious

as for the treatment of alzheimer's disease,currently, early identification and intervention of people at high risk of alzheimer's disease are the focus of controlling this disease.

because although countries around the world are actively investing in drug research and development for alzheimer's disease, no drug has been developed that can effectively delay or prevent the progression of dementia. the most commonly used treatments currently include: drug therapy, supportive therapy, psychotherapy, and rehabilitation training.

the main caregivers of alzheimer's patients are family members, most of whom lack knowledge about alzheimer's disease and care skills.

moreover, as the mental and behavioral symptoms of elderly people with alzheimer's disease increase, such as delusions and irritability, their self-care ability gradually decreases, and the difficulty of care gradually increases.the caregivers of alzheimer's patients face unimaginable stress and burden, and are more prone to depression.

if you encounter such elderly people outside, you must give them more understanding and care. we also hope that community health service centers in various places can carry out interventions, regularly hold alzheimer's disease health knowledge lectures, caregiver training and psychological counseling, etc.

in addition, formany people refer to alzheimer's disease as "senile dementia". however, this term is not only inaccurate, but also brings shame to people, and even causes many people to be unwilling to be diagnosed or show early signs of dementia, thus missing the best treatment period.

we urge everyone not to use the term “alzheimer’s disease” to refer to this type of patients!

planning and production

interview and compilation | xuezhu popular science author; linlin popular science author

interviewed expert: li jingjing, professor and chief physician of the department of neurology, beijing tiantan hospital

reviewer: tang qin, director and researcher of the science popularization department of the chinese medical association

planning丨lin lin

editor: meng ru

proofread by xu lai

the cover image and the images in this article are from the copyright library

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from being a daughter to being a "mom's mom" is the only option in my life after my mother was diagnosed with alzheimer's disease

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