Part 1
My mother developed dementia.
Then she suffered a cerebral hemorrhage.
The doctors told us that amyloid-beta, a protein associated with dementia, had likely accumulated in the blood vessels of her brain, narrowing them. Combined with high blood pressure, this may have led to the bleeding.
My mother has now undergone surgery to remove the blood from her brain and is recovering in the Stroke Care Unit (SCU).
Today is the fourth day since she collapsed. She was able to sit up and talk.
There are many parts of her speech that do not make sense because the language center of her brain was damaged, but her tone of voice and way of speaking were the same as when she was healthy.
Fortunately, the motor areas of her brain escaped major damage, so it seems likely that she will be able to move again with rehabilitation.
For the first time, I can see a little hope.
As for me, I am currently in a constant state of emotional collapse.
I try to hold back my tears, but the smallest thing can make them start flowing.
Even a child actor famous for being able to cry in ten seconds would be no match for me. I have become a middle-aged man who can cry in zero seconds.
Strangely enough, writing helps calm me down, so I decided to write down everything that has happened.
This has absolutely nothing to do with the Institute of Small World, but since I do not expect to be able to return to normal activities there for some time, I will be posting a series about my mother's illness and recovery.
I hope that it may help someone who finds themselves facing a similar situation.
How It Began
About six months ago, I began to suspect that my mother might have dementia.
Whenever I visited home, I noticed signs. I had repaired parts of the house during one visit, and she would repeatedly thank me for the same souvenirs as if she had forgotten that she had already thanked me before.
I felt that something was wrong with her memory.
I said to her,
"Do you think you might want to see a neurologist? There is a possibility that this could be dementia."
But the thought that she might have dementia seemed to worry her.
"No..." she replied.
So I suggested another approach.
"When are you seeing Dr. T next?
Why don't you tell him, 'I've been having trouble with my memory lately and I'm worried. I'd like to be examined at Hospital C.'"
"That sounds better. Nobody would be offended by that."
A few days later she saw Dr. T.
"How did it go?" I asked.
"He said, 'Oh, it's fine, it's fine. Don't worry about that.' He wouldn't take it seriously. So I just gave up."
"Come on... I don't want you to forget who I am."
"I won't forget."
That was the end of it.
She never saw a neurologist.
Looking back now, I sometimes wonder if things might have turned out differently had she gone to a neurology clinic at that point.
Several months later, on May 8th, my parents traveled to Toyama for a family memorial service.
By then, even my father had become concerned about her memory problems.
Apparently he told her,
"I'll take care of the money."
Of course, after spending a lifetime leaving everything to my mother, the person who actually withdrew the travel money was still my mother.
Then the first incident happened on May 8th.
My father nearly drowned in a bathtub.
He had taken his blood pressure medication and then stayed in the bath too long. He became overheated and was close to drowning when my mother came to check on him.
Fortunately, one of our relatives' wives was a school nurse and immediately provided first aid.
An ambulance was called.
I was later told that one of my father's pupils was dilated in the ambulance.
He was conscious and able to follow instructions such as raising both arms.
My mother rode in the ambulance with him.
The next day, she had completely forgotten that she had done so.
My father underwent both a CT scan and a contrast-enhanced CT scan.
No abnormalities were found, and he returned home late that night.
The following morning I spoke with my mother on the phone.
"After all that happened, your father is completely fine," she said.
"He even got up and went to the bathroom by himself during the night."
But later, when she spoke with the relative who had been a school nurse, it became clear that she no longer remembered the ambulance incident from the day before.
The relative later told me,
"When I mentioned your uncle's emergency transport, she was surprised."
"Are you aware that your aunt is having memory lapses?"
I replied,
"I've been trying to get her to see a neurologist, but she doesn't want to go."
During one of my phone conversations with my mother she said,
"Your father and I are coming home tomorrow."
That seemed odd.
Wasn't the memorial service tomorrow, with the return scheduled for the day after?
I wondered if they had decided to return early.
Concerned, I decided to travel to my parents' house the next day.
But the second incident had already happened that night.
My mother collapsed during dinner.
Part 2
That evening, my mother collapsed during dinner.
I later received the following account:
"Your aunt started nodding off while she was eating. It looked like she was about to vomit, but nothing came up. It happened several times, and then she collapsed.
I checked her pulse and couldn't find one, so I performed chest compressions about ten times. She regained consciousness.
By the time the ambulance arrived, she was conscious and able to walk.
She kept saying she didn't want to get in the ambulance, but we had her transported anyway."
I received this news around noon the following day while I was at Nagoya Station.
To be honest, I wished someone had told me when she actually collapsed.
Still, she had collapsed in the home of medical professionals.
For that, I am deeply grateful.
I considered changing my destination and heading directly to Toyama, but I was told that both of my parents were doing well at the moment.
So I continued to my parents' home in Nagano and planned to take the first train the next morning to meet them in Toyama.
That night I prepared meals for the following day.
While cleaning the kitchen, I threw away a slimy sponge and a foul-smelling scrub brush.
My mother had always been a very tidy person.
Why had she let things get like this?
In the storage shed I found several unused 90-liter garbage bags and piles of old newspapers stacked high.
The next day I retraced my parents' travel route in reverse, checking elevators, bus stops, and waiting areas to make sure they would have places to rest on the way home.
Eventually I arrived in Toyama.
When I met my parents at Toyama Station, they both looked fine.
I felt relieved.
My mother had no memory of being taken to the hospital.
"Mom, your heart stopped yesterday. Mrs. T performed CPR and saved your life."
"What? Really? I don't remember any of that."
"Do you remember Dad collapsing?"
"Not very well.
I remember checking on him because he'd been in the bath so long.
His face was above the water.
I screamed, and everyone pulled him out.
After that... I don't really know."
The relatives who had accompanied my parents to the station again asked me,
"Are you aware that your aunt is having memory lapses?"
The symptoms had become noticeable enough that people who spent only a few days with her could clearly see them.
The three of us returned home together.
Originally, my mother already had an appointment scheduled with Dr. T two days later.
However, because we were concerned about the episode in which her heart had apparently stopped, we moved the appointment forward and arranged for her to see him the day after returning home.
Then another unexpected event occurred.
This one turned out to be fortunate.
Dr. T had become ill himself, and his clinic was in the process of closing.
His daughter was temporarily handling patients while the remaining work was being completed.
I explained the situation.
"I asked Dr. T to refer my mother to a neurologist because of her memory problems, but he wouldn't take it seriously."
"Oh, was that the case?"
She immediately replied,
"I'll write a referral letter for the neurology department at Hospital C."
I was relieved.
Had Dr. T been there, there might have been an argument.
An appointment with the neurology department at Hospital C was scheduled for May 26.
On May 26, I took my somewhat anxious mother and my father, who still didn't fully understand what was happening, to Hospital C.
My mother and I entered the examination room together.
The cognitive assessment began.
"Please remember these words:
Raccoon
dog.
Dandelion.
Bicycle."
My mother repeated them.
"Raccoon dog. Dandelion. What was the last one?"
"Don't worry about it," the doctor said.
"Here's a hint. It's a vehicle."
"Bicycle."
The examination continued.
"Please draw a clock. The time is 10:10."
"Please write a sentence here."
My mother wrote exactly what she had been told:
'Please write a sentence here.'
The doctor smiled.
"That's beautiful handwriting."
The examination continued for a while.
Finally, the doctor turned to me.
"To summarize the results, it appears that her memory problems have progressed somewhat."
Then he asked,
"Have you heard about the medication options?"
"I've heard that there are drugs that can stop the disease."
The doctor hesitated for a moment.
"...No. They can't stop it.
At best, they can delay the progression of symptoms for a little over a year. In some people, perhaps ten months.
The treatment is not a pill. It's an intravenous infusion.
Patients need to receive it every two weeks.
In the end, only about one out of ten people chooses to proceed with it."
He continued.
"Not everyone is eligible for the treatment either.
There are cases where test results show that it cannot be used.
Let's perform an MRI and take a closer look before making any decisions."
I sat there in silence.
So that's how it really is.
Television makes it sound completely different.
An MRI was scheduled for June 23.
If everything had gone according to plan, we would have reviewed the MRI results and decided on a treatment strategy.
But things did not go according to plan.
Part 3
I had my own medical appointments scheduled, so I returned home on May 31.
Until it was time for me to leave, my mother and I talked about many things.
She was aware that she was forgetting things and worried about it.
At the same time, she still had a strong desire to learn.
She wanted to study all sorts of things.
At one point she found a newspaper advertisement claiming that a person could become fluent in English in 100 days.
"Do you think that's true?" she asked.
"Probably not."
"If it doesn't work, they should give your money back."
"They'd probably say, 'Everyone else can do it. The problem is you.'"
We both laughed.
Another time she said,
"I hadn't used my sewing machine for months, and I forgot how to use it.
But then I read the manual.
There were so many parts I had never read before.
Once I read them, things that used to be difficult suddenly became easy."
"Maybe forgetting turned out to be a good thing."
We laughed again.
Then she told me about a puzzle I had given her.
"I just can't solve it.
Sometimes I want to give up.
But somehow I still really want to finish it."
"Let's do it together tomorrow."
Those were the kinds of conversations we had.
On the day I left, I rearranged the flowers in the entrance hall and the alcove.
I went into the garden and cut some yellow irises.
My mother used to teach flower arrangement.
While we were arranging the flowers, I said,
"You used to teach ikebana, remember?
When I was in elementary school, you always told me to watch what your students were doing.
Then I'd come back and report things like, 'She cut the stem like this.'
Your students must have hated me."
She laughed.
"But after all those years, I still can't arrange flowers properly."
I filmed her while she worked on the arrangement.
It would become one of the last videos I would ever record of her before the stroke.
When it was finally time to leave, I said,
"I'll come back again on the 20th or 21st."
"Okay. See you then."
I got into the taxi and left.
She looked so healthy.
It was hard to believe that her heart had supposedly stopped just two weeks earlier.
I felt reassured.
My mother needed to take medication twice a day.
Because she often forgot, I had created a checklist and attached it to the refrigerator.
She could mark each dose after taking it.
She also used eye drops.
Once opened, the bottle needed to be replaced after one month.
That evening I called her and helped her replace the old bottle with a new one.
It took a little time, but we eventually managed it.
We also replaced the medication checklist with a new one.
Now I regret not staying one more day.
If I had remained until the next morning, I could have changed the chart and the medication together with her.
The incident happened the following day.
June 1.
That morning I called my mother to make sure she had used her eye drops.
"Thanks to that chart, everything is perfect," she told me.
"Thank you."
"You changed to the new bottle, right?
And you replaced the chart?"
"Everything's fine.
Perfect.
Thank you."
That was our conversation.
About an hour later I thought about calling her again.
Before calling, I checked the monitoring cameras to see where she was.
If she was busy doing something, a phone call would make her panic, so I usually waited until she seemed free.
I checked the living room camera.
She wasn't there.
I checked the kitchen.
She wasn't there either.
Then I looked at the front-door camera.
There she was.
She was dressed in full protective clothing for outdoor work.
It looked like she was going to do some gardening.
I decided not to bother her.
Through the camera outside the entrance I could see her working in the garden.
Meanwhile, I spent the day doing some gardening of my own and attending medical appointments.
That evening I checked the cameras again.
I saw my mother lying in the living room.
She did not look as though she was peacefully napping.
She looked exhausted.
Maybe she had simply overworked herself in the garden, I thought.
I decided not to call.
Later, around the time she normally would have finished dinner, I checked the camera again before calling to confirm that she had taken her medication and used her eye drops.
She was still lying in exactly the same place.
I could see her turning over occasionally.
At least she was alive.
But something felt wrong.
She did not appear to be in any condition to answer the phone.
So I called my father's mobile phone instead.
"The number you have dialed is either switched off..."
Of course.
My father always lets the battery run completely flat before charging it.
Then he complains that the phone is broken.
So I called the house phone.
My father answered.
"Is Mom okay?
Something doesn't seem right."
"Huh? What?
Your mother?
She's been sleeping the whole time."
"I can't hear you very well."
Then he hung up.
I watched the camera.
My father brought her eye drops.
He handed them to her.
Still lying down, she applied the drops herself.
At least she was conscious, I thought.
I called the house phone again.
"Is Mom really okay?"
"I just gave her the eye drops.
I'm putting her in the bath now."
"Wait a minute.
If she's sick, please take her to a doctor.
Are you sure she's okay?"
"She's fine."
Then he hung up again.
A little later I saw my mother stand up.
My father was supporting her.
She was unsteady but managed to walk to the bathroom.
In the dressing room he helped her undress, and she appeared to take a bath.
By this point it was obvious that she was not well.
I called again.
"She was working in the garden today.
Maybe she has heatstroke.
Please make sure she drinks some water."
"Yes, yes.
She's already in bed."
The call ended.
A short while later I saw my father carrying tea into the bedroom.
I deeply regret what happened next.
At that moment, I could have used the two-way audio function on the monitoring camera and spoken directly to my mother.
I didn't.
I suspect that by then she was already unable to carry on a normal conversation.
If I had spoken to her and realized that, I would have called an ambulance immediately.
Instead, I did nothing.
That night I barely slept.
Part 4
I barely slept that night.
At 5:00 the next morning, I resumed watching the cameras.
Normally, my mother would already be awake and sitting in the living room by then.
Six o'clock came.
She appeared on none of the cameras.
There was a train at 6:45 that would get me to my parents' house as quickly as possible.
I debated whether I should get on it immediately or continue watching the cameras.
At 6:24, just before the point where I would have to leave for the station, my father finally appeared on one of the cameras.
I immediately called the house phone.
"Is Mom okay?"
"Huh? What?
I'm taking your mother's clothes to her."
He sounded annoyed and was about to hang up.
"Wait!
Is she conscious?"
"Huh?
Can't hear you.
What?"
Then he hung up.
On the camera, I watched him walk toward the bedroom carrying clothes.
I waited.
My mother never appeared.
This might be bad.
My heart started racing.
My stomach began to hurt.
No.
This is bad.
I need to call an ambulance.
I asked an AI how to arrange emergency assistance remotely.
It told me to call the local fire department and explain that I was watching my mother through monitoring cameras and was concerned about her condition.
I gave the AI my parents' address and asked it to identify the appropriate emergency services office.
Then I called.
"I'm in Okayama right now.
I've been watching my mother through monitoring cameras, and she seems to be in very poor condition.
Something has been wrong since yesterday evening.
This morning I still haven't seen her come out of the bedroom.
Could someone please check on her?"
"Does your mother live alone?"
"No.
She lives with my father."
"And your father?"
"He's beginning to develop dementia himself.
I don't think he understands what's happening."
"Understood.
We'll send an ambulance."
Just like that, an ambulance was dispatched.
Then I realized I had made a terrible mistake.
When I left my parents' house on May 31, I had accidentally taken their spare key with me.
The key was normally stored in a security lockbox attached to the storage shed.
I had attached it to my own keychain while visiting and forgotten to put it back before leaving.
I remembered noticing it when I got into the taxi.
I had thought,
"I'll be back soon anyway."
Now the blood drained from my face.
The ambulance would arrive.
They wouldn't be able to get inside.
My father was confused.
The first person I had ever suspected of developing dementia was actually him.
My mother and I used to say,
"Your father keeps making up stories lately."
"Yeah. He's probably getting senile."
And yet here I was, depending on his judgment during an emergency.
That was my biggest mistake.
A person with dementia cannot be expected to recognize a medical emergency.
I do not blame my father for what happened.
The mistake was entirely mine.
Perhaps this sounds harsh, but one lesson burned itself into my mind that morning:
Never depend on the judgment of a person with dementia during an emergency.
I kept calling.
My father did not answer.
Then, finally, I remembered something else.
The cameras had a two-way audio function.
For some reason, I had completely forgotten about it.
I activated it and shouted.
"Dad! Open the front door!"
"Open the door!"
"Open the door!"
"Open the door!"
"Open the door!"
Again and again.
No response.
I kept shouting.
"I took the key!"
"I took the key!"
"Mom's going to die!"
"I took the key!"
Tears started pouring down my face.
Then I had another idea.
The cameras had built-in sirens.
I activated them.
Using both my phone and tablet, I connected to two cameras at once and triggered both alarms.
The sirens echoed through the house.
Still no response.
"Dad! Open the door!"
"Open the door!"
"Dad! Open the door!"
"Open the door!"
Again and again.
Nothing.
Then I heard it.
The sound of an ambulance siren.
The ambulance had arrived.
I continued shouting through the camera.
Then I heard a voice.
"Please open the front door."
It was one of the paramedics.
"The door is locked!
Break a window!"
"Break the window!"
"Break it!"
"Are we allowed to break it?"
"Break it!
Please break it!"
"My mother is in the back room on the west side!"
"Break the window!"
Later I learned that the paramedics had been going around the house knocking on windows and calling out.
Then I heard someone shout,
"It's open!"
At first I thought they had broken a window.
They hadn't.
Normally my mother was very careful about locking everything. Fortunately, because she had been unable to move around the house, my father had left one of the living room windows unlocked.
The paramedics opened the window and called into the house.
A moment later, my father finally appeared on camera.
He looked completely confused.
A paramedic explained,
"Your son called an ambulance for you."
"Did my son come?"
"No.
Your son was watching through the cameras and became concerned about your wife."
"Oh... really?"
"Could you unlock the front door for us?"
Finally, the front door was opened.
The paramedic explained again.
"Your son was watching the cameras and thought something was wrong with your wife, so he asked us to come."
"Really?"
My father still seemed completely unaware that my mother's condition was serious enough to require emergency transport.
Through the camera's audio function, I spoke directly with one of the paramedics.
"It looks like your mother has paralysis on the right side of her body.
We're going to transport her."
"They just evaluated her at Hospital C's neurology department recently."
"Understood.
We're contacting Hospital C right now."
A short while later he returned.
"We're taking her to Hospital C.
The hospital will contact you on your mobile phone."
"Thank you."
My mother was carried away.
Later, my father said something that I still remember.
"How did you know something was wrong with your mother?"
He genuinely had no idea.
He had not realized that anything serious was happening.
Only when the ambulance arrived did he understand that something was wrong.
On the camera, I saw my mother lying motionless on the stretcher.
Her body looked limp.
She barely moved.
The fact that someone could see that and not recognize that it was an emergency made me realize just how frightening dementia can be.
To be continued...
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