Caregiving does not necessarily destroy a family.
It is caregiving with nowhere left to turn that can push people to the edge.
And one day, that invisible line can suddenly appear at your own front door.
A few days ago, I received a message from a childhood friend who lives nearby.
“Several police officers were here when I got home from work. Do you know what happened?
I asked them, but they just said, ‘It wasn’t a serious incident. We’re sorry for causing a disturbance.’ They wouldn’t tell me anything, so I have no idea what happened.”
I immediately went to the front door and looked outside.
The police cars and officers were already gone.
I had heard people talking about an hour earlier, but there had been no police sirens or other sounds that would have made me think something serious was happening.
My father had just finished taking a bath and returned to his room, so I asked him whether he had heard anything outside.
He said he thought he had heard a man saying,
“Help me.”
After that, he heard several voices, as if someone had gone inside to help.
I sent that information back to my friend.
Then she replied with something that caught my attention:
“There were four police officers in front of R’s house, and they were measuring part of the property with a tape measure.”
R.
The moment I saw that name, I had a pretty good idea of what might have happened.
Something similar had happened a few months earlier.
｜What Was Happening Inside R’s House?
It was around 8 p.m. that night.
It was drizzling, just as it had been this time.
I heard an ambulance approaching.
The siren grew louder, then suddenly stopped somewhere nearby.
When I went outside, paramedics were carrying a stretcher toward R’s house.
Two police cars were already parked there.
An elderly man in his 80s lived in the house with his eldest son, who happened to be my classmate.
We had never been in the same class, so we normally just exchanged greetings.
But we had once talked during a junior-high school camping trip.
The older man was usually outside in his yard, often smoking a cigarette.
Whenever he saw me, he would wave and sometimes start a conversation.
While I was living outside Japan, his wife had passed away.
His younger son had also died.
He had talked to me about all kinds of things—daily life and household matters, taking care of one’s parents, and the importance of cherishing one’s family.
He seemed physically active and healthy.
But he would ask me the same questions repeatedly.
He often had no memory of conversations we had already had.
It had become obvious that he was living with dementia.
Over the past year, it seemed he had even forgotten who I was.
His smile had disappeared.
More and more often, he would sit quietly, staring at one particular spot for a long time.
That night, no one was taken away in the ambulance.
Later, several police officers came out of the house and sat in their patrol cars for a while.
Eventually, they left.
At first, I wondered whether his eldest son had become so exhausted from caregiving that he had hit his father and injured him.
But now, I wonder if the situation might actually have been the opposite.
Perhaps the older man, normally so gentle, had become agitated and impossible to handle, and his son had called the police.
Or perhaps the father had been shouting things like,
“Call an ambulance!”
“Go ahead and call the police!”
and had been pushing his son to the edge.
I cannot stop thinking about it.
And at the same time, I felt a deep heaviness in my heart.
Because I realized: That could be me someday.
｜Dementia Looks Different in Every Person
When people hear the word “dementia,” they may imagine a particular set of symptoms.
But dementia looks completely different from person to person.
And naturally, the burden placed on each family—and the kind of support that family needs—can be completely different, too.
An elderly woman living with a relative of my neighbor, K, used to knock on her daughter-in-law’s bedroom door after 1 a.m. almost every night.
“Where is my dinner?
I haven’t had dinner yet.”
Of course, she had already eaten hours earlier.
Eventually, an ambulance began coming to their house regularly.
But the person who needed to be taken to the hospital was not the elderly woman.
It was K—the daughter-in-law who had been caring for her.
The caregiver had collapsed.
｜Our Family’s “Midnight Ice Cream” Problem
My mother does not wake me up in the middle of the night.
But she wakes up every three hours to use the bathroom.
And after using it, she quietly goes into the kitchen and eats ice cream.
I can buy a box of ice cream in the evening, and by the next morning, it is gone.
Recently, she has become obsessed with small three-pack containers of mozuku, a Japanese seaweed dish.
She eats all three during the night.
One day, I discovered her eating hanpen, a soft Japanese fish cake, straight from the refrigerator.
Crab sticks disappear quickly, too.
She tries to eat them secretly in front of the refrigerator so I won’t notice.
But I notice everything.
I hide the hanpen and mozuku.
As for the ice cream, I hide it in a secret spot in the freezer that only I know about.
That is how I deal with it.
Once my mother becomes fixated on something, she can keep doing it for a while.
A little while ago, her obsession was tissues.
She used every box in the bathroom, kitchen, and living room.
Three boxes.
In one day.
She could also use an entire roll of toilet paper in a single day.
So I stopped leaving tissue boxes in the bathroom and kitchen.
In the living room, I give her tissues only when she actually needs them.
Our household tissue-paper crisis has been solved.
But this is what caregiving can look like.
It is not always a dramatic medical emergency.
Sometimes it is three boxes of tissues.
Sometimes it is missing ice cream.
Sometimes it is someone secretly eating food at 2 a.m.
And somehow, all of those little things become part of everyday life.
｜“Okay, I’ll Take It Now” — Until 7 p.m.
My mother is supposed to take several medications in the morning.
No matter how many times I remind her, she often doesn’t take them.
“Okay. I’ll take them now.”
That is what she says.
But sometimes, the medication is still sitting there at 3 p.m.
Sometimes, it is still there at 7 p.m.
She said she understood.
She said she would take them.
But she doesn’t.
When you are a caregiver, there are moments when you can no longer tell whether someone simply doesn’t want to do something—or whether they genuinely cannot do it.
And while you are trying to figure that out, your own exhaustion quietly accumulates.
｜The Biggest Problem in Our House: The Bathroom
For my mother, the biggest problem has become the bathroom.
Using the toilet.
Eating.
Bathing.
These are basic human activities.
I have tried to avoid using adult diapers for as long as possible because I believe that being able to use the bathroom independently is part of maintaining a person’s dignity and humanity.
But toward the end of last year, accidents began happening more frequently.
She couldn’t make it to the bathroom in time.
Sometimes she had already urinated before reaching the toilet and would be standing there, soaked.
I would clean everything up and help her change her clothes.
Then she would ask,
“Why are you cleaning?”
Earlier this year, we finally started using adult diapers.
I thought it would make things easier.
It didn’t.
Instead, another unexpected problem appeared.
“If I’m wearing a diaper, I don’t need to use the bathroom.”
“I’m fine.”
That became her thinking.
And this is what started happening.
She would wake up, sit down at her usual place at the table, and simply stay there.
For hours.
Eventually, there would be a pool of urine on the chair.
The urine would soak through her clothing and even reach the back of her clothes.
She had essentially become “a person sitting in her own waste.”
The first time it happened, I lost it.
“This is NOT the bathroom!
This is where we eat!”
I shouted.
But even after that, I couldn’t calm down.
I was furious while cleaning everything up.
I threw the trash can against the wall.
Then, as I was about to throw something else, something happened.
Maybe it was karma.
My right ring finger caught on the chair.
My finger bent backward.
I fractured it.
It swelled almost comically fast, turning a deep purple.
That was when I realized something I did not want to admit.
Our family, too, had reached a point where I could no longer say that calling the police was unimaginable.
Since then, I have been reminding my mother to use the bathroom about every two hours.
｜Caregivers Can Be Pushed to the Edge, Too
Lately, I have seen news reports about horrific incidents involving caregivers—including cases in which care managers have been attacked or killed, and cases in which elderly couples or parents and children living together have died in apparent suicide pacts.
Now that I am living this reality myself, those stories affect me very differently.
After these reports, television programs often say:
“If you are struggling with caregiving, please contact your local Community Comprehensive Support Center.”
That advice is important.
Our family eventually reached the point where we needed to connect with Japan’s public long-term care system.
But I began wondering:
Is that really enough?
｜Entering Japan’s Long-Term Care System
The process generally begins by contacting your local municipal government or a Community Comprehensive Support Center.
They can connect you with a care manager.
The care manager then visits the home and assesses the situation.
After that, the family applies for Japan’s long-term care insurance through the municipal government.
A municipal official visits the home for an assessment.
Eventually, the level of care services available and the family’s share of the costs are determined.
The care manager then introduces services that can be provided within those limits.
Our care manager gave us many suggestions.
For example:
“I’m becoming concerned about your father’s risk of falling at home. You may want to install more handrails.”
I understood the concern.
But we already had handrails in the entryway, living room, bathroom, bathtub area, beside the bed, and almost everywhere else my father regularly walked.
There were already seven of them in our relatively small home.
I wondered:
Should we simply add a second handrail in each location?
Then came another suggestion.
“You should take a break occasionally. Why don’t you go to a hot spring resort and relax? Perhaps your parents could use short-term respite care.”
I asked about the cost.
My mother has a 10% copayment, so her short-term stay would cost approximately ¥8,000 per day.
My father has a 30% copayment, so his would be approximately ¥24,000 per day.
For both parents to stay for three days:
Mother: approximately ¥24,000
Father: approximately ¥72,000
Total: approximately ¥96,000.
In other words—
it would cost more than my own two-night, three-day hot spring vacation.
I couldn’t help thinking that.
There was another issue.
If my mother needed a handrail, her 10% copayment would make it approximately ¥3,000 per handrail.
For my father, with his 30% copayment, it would be approximately ¥9,000.
Fortunately, when my mother suffered a subarachnoid hemorrhage at the age of 62, we had already installed most of the handrails she needed.
That decision years ago turned out to be a blessing.
｜When a System Exists, but People Still Can’t Say “Help Me”
Whenever a serious caregiving incident makes the news, we hear the same advice:
“Please contact your local Community Comprehensive Support Center.”
Of course, connecting caregivers with public support is important.
I have personally learned about services and options that I did not know existed because of our care manager.
But after actually living as a caregiver, I have begun to question something.
What happens when someone who is already mentally and physically exhausted finally reaches a support center?
Does the system truly make that person feel supported?
Caregiving systems are not only about receiving help.
They also require the caregiver to understand information.
Compare options.
Consider costs.
Discuss choices with family members.
And make decisions.
All of that requires energy.
But some caregivers have almost no energy left.
Unfortunately, there are also times when care managers recommend services that families feel they do not need.
After all, part of a care manager’s role is to explain services available within the long-term care insurance system.
Simply increasing the number of people making recommendations, however, does not necessarily solve the underlying problem.
If several people recommend services that a family does not need—or cannot realistically afford—it can create more confusion and mistrust rather than relief.
For someone already exhausted by caregiving, that can become another source of pressure.
That is why I believe society needs to understand not only the services available to caregivers, but also what it actually feels like to be the person who has to navigate those services while exhausted.
｜What Shocked Me Most After Returning to Japan
When I returned to Japan, one thing shocked me deeply.
During the approximately ten years I had been away, three people living near my parents’ home had died.
A man in his 30s who lived diagonally across from our house.
A man in his 50s who lived behind and to the left.
And a woman in her 30s who lived a few houses behind us.
Each had died by suicide.
And then, quietly, they were gone.
I cannot look at that and say that this is a truly healthy society.
People can become isolated.
They can carry unbearable burdens alone.
And eventually, they can disappear without anyone knowing how desperate they had become.
We often describe these things as individual problems.
But are they really only individual problems?
I think caregiving can be the same.
Because they are family.
Because they are our parents.
Because “I have to do it.”
So we keep going.
And going.
And going.
Until we realize that we have already gone beyond our own limits.
｜And Yet, There Were Still People in This Neighborhood
But there was one thing I found comforting.
The people in my neighborhood faced these realities with sincerity.
No one gossiped.
No one mocked anyone.
Instead, people worried about each other.
They worried about me.
And they worried about R’s family.
That is why I think about R now.
We are in similar positions.
When the right moment comes, I want to talk to him.
Not to give him advice.
Not to tell him what he should do.
Maybe simply to say,
“This is hard, isn’t it?”
And talk about the reality we are both living through.
Because sometimes, you do not need someone to solve the problem.
You just need someone who understands.
Someone who makes you realize:
“I’m not the only one.”
Maybe that alone allows a person to breathe a little more easily.
Caregiving is not only a family problem.
It is not something that should be carried entirely inside one home.
And the life of the caregiver matters, too.
That is also Quality of Life.
｜What Caregiving Has Taught Me About Quality of Life
1. The dignity of the caregiver matters, too
When we talk about dignity, we often focus on the person receiving care.
But the caregiver is a human being, too.
They have their own time.
Their own life.
Their own right to live as themselves.
Supporting someone else should never require destroying yourself.
2. Asking for help is not weakness
Doing everything alone is not necessarily a virtue.
Using public services is not weakness.
Asking a neighbor for help is not weakness.
Talking to someone is not weakness.
These are all ways of choosing to keep living.
What society needs is not to blame people who have reached their limits.
We need a society where people can say “I need help” before they reach those limits.
3. Quality of Life means not leaving anyone alone
Through caregiving, I have come to believe this even more strongly:
No one is meant to live completely alone.
That is why families should not be expected to carry the entire burden themselves.
Public systems, communities, neighbors, and people need to connect with one another to support both sides of caregiving.
The person receiving care.
And the person providing it.
Both lives matter equally.
Quality of Life should never depend on sacrificing someone else’s life.
To me, it means creating a world where both the person receiving care and the person providing it can continue to live their own lives—with dignity, connection, and a sense of self.
And in the middle of this reality of caregiving, I am still trying to understand what that truly means.
