Followed by the middle part...
After being rejected from a clinical trial, I gave up on visiting university hospitals.
The third time I came across a doctor with the "Kouno Method".
He mentioned the relationship between developmental disorders and dementia, and left the hospital.
Her care needs remained at level 2.
The facility didn't last long, and I was "taking my mother around" almost every day.
I started working selling things on the Internet, but my mobility became increasingly impaired.
Her relatives, with the exception of one, could no longer be reached.
Choosing the next "Kouno Method" doctor...
--------------------------------------------------------
I had to choose my next "family doctor".
The only medication I was getting was from several hospitals.
It took me years to get my first "dementia specialist.
She prescribed only donepezil.
"She said,
"There's no cure for people like you.
There were no clinical trials available.
I was deprived of the opportunity for a cure and a future of ease for my caregivers.
At that point, I just couldn't trust doctors anymore.
I was seeing multiple doctors at the same time.
There were also doctor's orders.
I was originally given medication because it didn't work for me, and I was told to adjust it freely.
Since there were no Kouno Method doctors nearby.
I chose one from another prefecture and decided to go there.
The big idea is the same as the first "Kouno Method" doctor.
However, the drugs still didn't work.
He tried not only wintamine, but also sedatives and sleeping pills with less side effects, one after another.
I am still seeing this doctor today.
I am seeing a psychiatrist and a home health care provider at the same time, but I can't decide.
One day, all of a sudden, mother couldn't recognize child face...
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One time, late at night, I was traveling by car to another prefecture.
My mother suddenly asked
"Who are you?"
"Have I seen you before?
She asked with a half-smile on I faces, not really understanding.
I thought it was because it was dark at night.
I took she out to a brightly lit place, but she couldn't recognize me.
A disturbing sign.
I wondered if she was going to turn out like her grandmother, or turn hostile.
The situation subsided after a while.
But after that, once a week.
I couldn't recognize the face of the "kid."
The driver?
Or a school teacher?
Or a parent?
Mother asked us I the child was.
The pace gradually increased.
The way she referred to me changed from "name" to "teacher".
For a while after that, I continued to walk with my mother every day.
Forgetting my face... Returning to my home... Anger
-----------------------------------------------------------
Mother was addicted to her faith and had a habit of spending and borrowing money.
As a result, she lost the house she had inherited from her ancestors.
For a long time after that.
we was forced to live in an apartment.
I want to go back to that house.
She started to "insist" that the house should still be there.
This is insane.
The story that makes me the angriest.
When I moved to where I am now.
Didn't you ask yourself, "I want to be here because that's where I originally worked at school."
Didn't you ask for it yourself?
There were places we wanted to move to.
I wanted to move to a different place, but I had to go along with my parents' wishes, didn't I?
I'm not sure what to do.
I don't want to be in such a dirty house.
I don't want to be in this dangerous place.
We're going back. I'm going back.
Each time, I scolded mother and raged.
And each time.
mother went home and she left.
looked for the child, she left.
Mother trying to get back to a home she can't get back to.
She looking for parents and small children who are not there.
The conversations were strange.
A passerby called the police.
She was "taken into custody" by the police.
Sometimes they would tell me to come and pick mother.
Sometimes they would come and pick me up, and other times they would deliver mother in a police car.
Repetition of the same questions by the mother... The medication doesn't help.
-------------------------------------------------------------------------------
If I just listened.
"If you don't shut up and listen... - ...you'll be bombarded with questions.
Why are you here?
Get them out of here.
Where are the children?
Who are you?
Where are your parents?
Where's my bag?
Where's my bag?
Where are my work papers?
I had no choice but to get angry, cancel my thoughts, and stop.
Medicine didn't work.
Doctor prescribed medication.
I've been giving it to she at 2 to 10 times the dosage.
But it didn't seem to help much.
Eventually, the pace of the questioning increased.
There are "waves" of forgetfulness.
Time to understand?
The time when you can tell?
and time when I could understand?
The day I said I couldn't take it anymore...
----------------------------------------------------------
One afternoon, I was stopping in the parking lot of a home improvement store about an hour's drive from my house.
Who are you?
I'm going back to my house.
I was exhausted, too.
I told mother to do what she wanted and went into the store.
About 10 minutes later, I came back.
The door was left open.
Mother was no longer there.
A few hours later, when it was dark, the police called.
the local police.
What's your relationship to she?
Why are you here?
Why aren't you at home watching her quietly?
I was very angry, so I hung up the phone.
Police called me several times after that.
After 10:00 p.m., he said, "Please come and pick it up.
I said, "I can't. I'm too tired. I can't today.
The police officer said, "I see. That's fine," he said, and hung up.
After that, I went back to my house, staying in the car.
Protected by "unavoidable measures," and...
------------------------------------------------------------
The next day, I got a call from the city hall, saying that they had taken him into custody in the appropriate city.
She had nowhere else to go.
They put mother in a nursing home, but they couldn't tell him where.
I was informed that they suspected that I were "abusing" her.
As I contacted the Ministry of Health, Labor and Welfare, the prefectural government, the city government, etc., I was told that this measure was
"unavoidable measures."
We learned that these measures are called "unavoidable measures," and that they are implemented by the municipalities based on the Elderly Welfare Law (using available slots for nursing care services) when there is a high risk to the life or body of an elderly person and serious consequences can be expected if left unattended.
It's all about protecting the elderly and their bodies.
The caregivers and their families. No protection at all, no matter how tired they are.
He suspects that I are abusing mother.
He don't give out mother cell phone number or any other contact information.
I won't even tell them the facility where mother was held.
However, I was told that I would be charged for those days.
Frontotemporal patients forget "face first.
Once they forget the face, they become "hostile" like my grandmother.
Even if she is returned home, she will have nowhere to go.
When I asked if the government would take care of them as they were, they said they would not.
They would admit cognitive patients to the hospital, but would return her to her home after a maximum of three months.
The results of the linkage are not useful.
The fee for the protection is requested.
The result of the conversation is mother the home will be returned within 2 weeks.
Conditions for returning to your home
We will be able to provide support for cognitive disorders.
Access to nursing care
Access to medical care
We have been asked to do so.
In the meantime, we are unable to provide any contact with our mother.
The temporary shelter was a vacant slot in a pay nursing home.
It seems that they were admitted under the authority of the government.
After that, we found out that if a passerby reported the incident and the police took him into custody.
If you are taken into custody by the police, you must report to the police within 24 hours of being taken into custody.
or before midnight.
If no family comes to pick them up within 24 hours of their arrival at the police station, or after midnight, we will contact the government and throw them into a facility.
In that case, they will use the available slots in the fee-based facilities (welfare slots) and admit the mother under the authority of the government, regardless of their symptoms...
I found out that they charge the child for their services.
It's easy for people to call the police.
But if you don't take them in, even if the family is at their wits' end
That's what happens.
Later, I received a bill for 30,000 yen per day.
Wandering... police protection...
-------------------------------------------------------
Eventually, the noise increased.
And the number of times she lost track of my increased.
All the time she was home, especially during the day, she tried to leave the house endlessly.
She kept making noise like she was on fire, screaming outside and trying to leave.
As soon as she left the house, would stop the car and pull passersby over.
"I want to go home.
"I want to go home.
I want to go home.
In normal cases of Alzheimer's disease, wandering seems to occur when a person wanders aimlessly, walking for miles.
But in my mother case, energetic, talked a lot.
And had strong legs and feet.
"I'm going home.
"Find my child.
So she were often reported police for their strange conversations. This was often the case.
As early as ten minutes after leaving the house, the police arrived.
Mother found myself in police custody more than 100 times in one year.
If you include the number of times I didn't sign the pickup paperwork, it was even more.
I think I went to the police 200 to 300 times a year.
There were days when I went back and forth to the police three times a day.
However, if the police refuse to take back, he will be sent to a fee-paying home under the same "unavoidable measures" as before, and will be charged the actual cost.
After a certain period of time, the patient will be returned home.
As long as this is the case
I couldn't help but take her in
Her features were such that it was hard to believe she was a former teacher.
Her eyes were swollen with fever and she looked as if she had been beaten.
We had a few run-ins with the police.
At the local police station, I was able to get a face-to-face meeting with them, and they were able to recognize mother without any ID.
Pissing everywhere...
------------------------------------
That's when mother toiret started to get unusually close.
At first I thought it was frequent urination, but the medication didn't help and there was nothing wrong with my body.
She went back and forth to the bathroom dozens of times a day.
Eventually, he began to pull his pants down as soon as he thought of going outside.
I pissed as soon as I got out of the car.
Bending down to pee in a parking lot.
Entering someone's house to pee.
Pissing in the shadow of a billboard.
Occasionally taking a piss.
I got into trouble.
I got into fights every time.
What do you want me to do?
When I went into the bathroom, I panicked.
I don't know how to do it, get it out, get it out of here.
Originally, I wore Rehapan (rehab pants) all the time from the beginning of my symptoms, so I didn't leak right away, but it didn't matter much.
Because I had to take the pants down every time.
I once asked she why she did this.
The answer.
"'I'm afraid of being alone, so I want to do it where other people are.'
More often than not, I was kicked out of the store for taking a piss.
From that time on, I parked my car on a public road instead of a parking lot.
If it's a public road, it's not private property.
You can do whatever you want.
Get out the door.
As soon as I pissed myself, I ran away.
I explained the situation to she, but she wouldn't understand.
Once mother understand, if can't improve, they'll just kick we out.
The facility has a dementia day twice a week...
-------------------------------------------------------------
At the direction of the city hall, continued his day service for dementia.
I couldn't remember the faces of the staff. she resisted going almost every time they came to pick she up in the car.
From 9:00 a.m. to 4:00 p.m, Twice a week.
It's been three years now.
There are no other facilities in the area, so the rooms are always full and there are no vacancies.
The number of hours will not increase.
The only time when there are many staff members is during the daytime, but they are doing a good job.
However, recently, they have been increasing her medication and asking I to leave if she starts to make more noise.
Basically, mother talks all the time.
Mother may try to leave the facility or complain about paranoia and damage to the staff (not the elderly patients).
In the beginning, they worked amicably on curriculum such as reading and writing, and even drew pictures, but recently they have been doing less and less of that.
To be honest, I have never seen how our mother live in the facility or how they are progressing.
I don't have the luxury of seeing what's going on with my mother, nor do I want to hear about it.
I don't think I'll ever feel that way again.
When she came home from day service , I initially met at home.
However, every time she came home, she would try to leave again with great vigor.
By then, it was too late to take her around.
I couldn't stop the progression of her dementia.
Who are you? I'm going back,
and we'd end up fighting.
So it became stressful for me to take her around.
I wanted to be alone at least for the day.
So I negotiated with day service to secure the door with a block so that mother wouldn't be able to leave immediately when he came back.
The blocks weighed over 120 kg in total.
Strictly speaking, abuse? But the police and the government tolerated it.
Because there was nothing else they could do.
We had no choice but to turn the whole house into a jail.
Destroying the inner lock with a kitchen knife, breaking the gate with a body blow...
------------------------------------------------------------------------------
As for the door, it was initially locked internally.
When I tried to leave, I twisted a kitchen knife into the door gap and broke it, which broke the internal lock and prevented it from opening from the outside.
I happened to be able to open the door at the time.
I had to call a contractor and spend a lot of money.
I decided to fix it from the outside with concrete blocks.
What should I do when I leave my mother alone?
When I come home from the day.
At first we used a few light bricks.
But after repeated bodily harm, shifting, moving, and breaking, the bricks started to fall apart.
Mother kept getting out.
In the end, I piled up several large blocks (weighing about 17 kg each), totaling over 100 kg in front of the door.
Whenever there were not enough blocks to stack, she would shift them with her body and get out through the gap.
But when I was inside, there was no way to lock myself in from the inside.
So I threw them out.
If I didn't, I wouldn't be able to hold on.
I didn't want her to throw away her valuables.
I removed my hearing aids and cash when I got excited.
As soon as the switch was turned off, she became quiet.
The medication had no visible effect.
She would either wander off or talk to a third party (facility staff, police, etc.).
In many cases, she would turn off after a dispute.
The gate was also broken by a physical attack.
The lock was blown off, so I gave up trying to tighten it.
I gave up trying to tighten it.
Strange behavior...
-----------------------------------------------------------
Screaming at passersby from the back of a motorcycle...
Pissing in the grass...
Pissing at a scramble intersection in broad daylight.
Staying up until 3 a.m. making noise.
Flipping over in a parking lot and making noise
Wearing a diaper over her head.
Not bathing, not being able to take a bath, not knowing where the bathroom is.
Preparing to move every day
Bagging and stacking your belongings
Piling up bags of stuff on the front porch
Scattering the contents of my bag on the road.
Goes out in the middle of the road and stops cars.
Hitchhiking, reported and protected on the way, getting on a train, unable to get off, protected in the station.
She pissed in and out of the house.
But even in this state, she's had her ups and downs.
She was calm, but...
But hours of the day, she would lose track of us.
I was in a panic.
Mother left, trying to get home, trying to find she kids, trying to find parents.
Once She got through those hours of excitement, She was back to normal.
Her way of addressing me had become "teacher".
My place in the world was slipping away.
I often had to go to the police because Mother was not satisfied without a third party's judgment (that you were crazy).
Sometimes I would call the police myself.
That was useless because they spent hours convincing only me and did not intervene between me and my parents.
I often had to carry them to get others to call the police.
Mother don't watch TV, Book don't read...
-------------------------------------------------------------
Mother has no interest in television.
In the early days, there were times when I still watched it, but these days, I have no interest in it at all even when the TV is on in front of me.
To prevent myself from getting bored.
Mother don't even copy news articles in notebook anymore.
She don't even read books anymore.
When she wrote my name, it was full of typos, and she stopped writing.
She turned energy to talking, making noise, and going out.
She was constantly turning over bag and picking at its contents.
or searching for something like a neurotic.
Mother been stuffing and unstuffing tea cups, hash bins, and toilet paper into bags, and then unstuffing and unstuffing them again, and again, and again.
She tore bag to shreds.
I made a mess of the room.
She stopped watching TV even when it was on in front of her.
She stopped reading and writing.
Even the notebooks she used to write in so diligently were now closed immediately after opening.
All of her energy went into making noise.
She was deaf to begin with.
hearing aid in my left ear and complete deafness in my right ear.
have a Grade II physical disability certificate because of that.
With hearing aid, the TV sounds like noise.
At the hearing aid store, I tried to use an "attachment" to transmit the sound of the TV to my hearing aid so that I could hear it, but it didn't help me hear it.
I can't stay here... Mother make too much noise... I have to go back soon.
------------------------------------------------------------------
When Mother had access to a cell phone, Shewas a texting fiend.
She was dependent on texting.
I was able to stay at home to some extent by replying to them, but
But since Mother couldn't (or didn't) control the mail, he started to chase me immediately.
I can't stay at home anymore.
If I leave her alone at home, she becomes panicked within a few minutes and storms out the door to try to leave the house.
This is the same either way, even if I'm home, because she will leave to look for her child.
But when I tell her to wait here, she's quiet for a few minutes, then a minute, then 30 seconds.
After that, she'd either turn on right away and not recognize me, or she'd make a lot of noise and
Or she'd make so much noise that she'd call passersby and the police.
If I far away from home, I won't be able to get back.
The only way to prevent it from turning switch on is to return within a few minutes and overwrite the memory.
When you say you can't take your eyes off the road, you mean
It's not because I don't want to bother people around me.
It's not because I'm worried about my mother.
I realized that this is what I was thinking.
I can't work.
----------------------------------------------
I continued to work online, but
But as I was taking my mother around, I couldn't find the time to do it anymore, and I still had to leave in the morning and return in the middle of the night.
I was so tired that I couldn't think straight, and I couldn't work anymore.
I've tried delivery work, but
But I gave up after only a few cases.
The police were called.
It was too much for me.
I couldn't get my head around working from home as well.
I'm not sleeping well and I'm stressed.
So I can't do it.
It would have been better to work outside the home, using my body.
It is becoming a day-to-day life where money just goes out the door.
I haven't received a 1 yen in support from the government for the past ten years.
Not even a "1 yen".
Government support...a "hole" in the system
---------------------------------------------------------------
I have appealed to the government again and again.
I've just fallen into a "hole" in the system.
There is no system to support me.
Me are living together, so separation is not allowed.
If me and my mother both go broke and bankrupt, govement can help you get welfare (they say the child has to be broke too).
I started to appeal on Twitter, but I was introduced to a non-profit organization, which refused to help me, saying that it was not a support area and the area was different.
I would like to have a day care facility that I can go to.
I want a medical institution that can take care of juvenile dementia.
I don't want to rest in a mental hospital for 3 months only.
I want to be placed in a special care facility or nursing home.
I want to use only my mother, pension because the cost of a facility is too high and the burden is too great.
If there is no system, I would like to have support money while I am taking care of my mother at home.
Once I heard how much it costs at a fee-based home.
In the case of juvenile dementia, even if there is no violence or verbal abuse
The average home will refuse or kick she out.
As a rough guide, it seemed that the price was 37 million yen for admission, 700,000 yen per month, and a separate guarantor.
I have appealed directly to the city hall several times, accompanied by a member of the Communist Party's city council.
So far, there has been no action.
Facilities... Hospitals...
-----------------------------------------------------
I have appealed directly to the city hall several times, accompanied by a member of the Communist Party's city council.
But they told me that if I worked hard, I would be able to get to "Care Level 3".
The hospital said that if I persevere mother symptoms would ease and I would be able to enter a facility.
It was all a lie.
Home health aides, and care managers speak
"The nursing home is no longer available for my mother."
They repeat that there is no relief system anymore.
Lies.
That's not what they said.
I knew that I had been complaining from the beginning.
As I had appealed from the beginning, I wanted to put her in a special care facility and separate her household.
I wondered if I had no choice but to put her in a special care facility and separate our households.
I was recommended to the mental hospital several times.
However, the head of the hospital said, "I can't recommend it.
There are many reasons for this.
He said that the medication he had prescribed was not working at all, so he had no choice but to give her a large dose to cripple her or restrain her.
In any case
In the case of dementia, where there is no fear of "self-injury or other harm,"
It is a rule that a patient can be discharged after a maximum of three months.
After that, the patient cannot be readmitted to the hospital (I heard this depends on the region, but in this prefecture where there are not enough beds, it is difficult).
Since the government has cut medical expenses for patients who have been hospitalized for a long period of time in order to prevent them from being hospitalized for a long period of time, the hospital can't make any profit, so they start sending them back home (throwing them out).
In that case, it would be difficult to return them to home care.
In such a case, it would be difficult to return the patient to home care, so it would be natural for the patient to be placed in an institution.
If the patient is young and has severe symptoms
But if he is young and has severe symptoms, he can't be placed in a group home, elderly care facility, or special care facility.
So, even if I can't recognize her face, even if she becomes unsettled.
We have no choice but to return her to her home.
At that time, if the patient has no family and is an only child, he will be ruined if he doesn't have a job or a place to be accepted, so I don't strongly recommend it, but if he really wants to rest, it's okay.
If I am admitted to the hospital, I will have to stop my current two days a week for dementia, and I won't be able to re-enter.
If I am hospitalized, the waiting list will fill up quickly.
There is no other facility for her to go to.
We don't want to gamble.
We don't want to gamble.
We don't want to go on vacation for a few weeks.
We want a solution.
As long as they don't take responsibility for me, I can't gamble with mental hospitalization=progression=unrecognizable face=violence, so I'm trying to find a way, mainly by going to a day care center, but I still haven't found one.
I was referred to the city hall.
I was referred to a "medical day care" at a mental hospital.
The "medical day care" at the mental hospital, to which I was referred by the city office, had a lot of general addicts in it, and they complained about it.
She was banned within two hours of starting.
I was introduced to the Kouno Method.
Many of the day care centers for severe dementia, which were introduced by the Kouno Method, have stopped operating in the suburbs because they are not profitable.
There is a day care for Young onset dementia, but it takes over an hour to get there, and they only see local residents. It is impossible to go to the day care.
And I can't move.
Can I rent an apartment?
Under the current situation?
I even contacted the prefectural "Young onset dementia coordinator."
Even after repeated appeals, they just listened to us saying that there was no system.
As long as the prefecture doesn't have a facility, they can't make any referrals.
I was told that I would have to ask her to move out.
I was told that it was too late, but I had no choice but to struggle.
If it's no use struggling, we have no choice but to sue.
At the very least, I have no choice but to show the world that I've been working hard.
And that brings us to the present.
As there are always new incidents, I have been looking for a system, searching for one, and appealing on Twitter, but so far nothing has changed.
I'll try to add, modify, and update this page as needed.
----------------------------
Caution.
I am Japanese. The text is from DeepL automatic translation. Please understand that some parts may be difficult to read.
Final Addendum: September 28, 2021
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