Living with what cannot be fixed | What I learned about caregiving as a former CE

I could fix machines. But I cannot fix human aging.

Chapter 1: The night calls never end

Record time: 2:17
Event: Woke up to mother's voice calling me
Response: Got up, checked on her, spoke to her, assisted with movement
Notes: The night is long once you think it's over

Past two in the morning. My body, having fallen asleep once, is pulled back by the sound of my name being called.

At first, I thought it was a continuation of a dream. But it wasn't. Only my ears returned to reality first. It was the same when I received late-night calls back then. The bell rings. The phone rings. I am called. My consciousness is taken away before my body is.

"Come here for a second."

My mother's voice isn't loud. But there is no hesitation in it. That, in turn, made it feel urgent.

I kick off the futon and put my feet on the floor. The floor is cold at night. I head into the hallway with a sleepy head. Beyond the darkness, there is the presence of my mother.

Back then, I was a customer engineer for fax machines. If I was called, I went. Day or night, I headed to where the breakdown was. Paper jammed. Couldn't send. Couldn't receive. Was the line dead, was it the unit itself, or was it the other party? Isolating the cause, making guesses in order, and eliminating them one by one. That was my job.

Late-night calls weren't pleasant, but they were still straightforward. The other party was a machine, there was a broken part, and there was a possibility it could be fixed.

What is in front of me now is not a machine. It is my mother. The reason for being called in the middle of the night is slightly different every time. Does she want to go to the bathroom? Is she anxious? Does she just want someone to be there?

"What's wrong?"

When I ask that, my mother makes a face that looks a little angry, or perhaps troubled. She probably can't explain it well herself. Cause unknown. No reproducibility. Outside the manual. In my old job, this would be the most troublesome kind.

Even so, I cannot stop. I watch the tone of her voice. I watch her feet. I watch the air in the room. I probe to see how clear her consciousness is. What is needed now is not logic, but procedure. Don't raise your voice. Don't rush her. Don't let her fall. The difficulty level of the night increases just by that.

I place my hand on my mother's arm. It is light. But aging is not light. Sometimes I think that what I am supporting is not just one arm, but the years that person has lived.

I manage to move her, have her sit, and give her water. Even though it is only a matter of minutes, my nerves are completely awake. Once it happens like this in the middle of the night, my body won't let its guard down until morning.

The night call job had an end time. But caregiving has no such break. The night doesn't end and become morning. The morning just begins while the night continues.

My mother settles down a little, and I return to my room. Even if I get back into the futon, the sleepiness is no longer where it was before. Only my ears are alert.

The night when faced with something that cannot be fixed is long. No, rather than long, I don't know how it ends. Even so, I lie down again. I close my eyes in the dark room and prepare for the next voice.

Unlike back then, what I am protecting now is not a machine. It is one mother, and the morning of this house.

Handover notes: The night sometimes begins again after it has already ended.

Chapter 2: The morning of caregiving arrives suddenly

Record time: 5:08
Event: Signs of an incident from the bedroom
Response: Waking up, checking, cleaning, changing clothes, laundry
Remarks: Morning does not begin; it is already underway from the middle of something.

When I realized it, the room had become a little brighter. I don't even know myself if I slept or if I couldn't sleep. My body didn't feel like it had rested at all.

Only my ears picked up the morning first. It was that unique atmosphere when something is off.

I headed to the bedroom. The moment I opened the door, I understood the situation immediately.

It had happened. I don't mean that my mother did it; I mean that the event had occurred.

Bedding, pajamas, feet. For just a moment, the steps ran through my head. Was there a fall? How is her consciousness? Should I change her clothes first, or clean up first?

It felt like I was thinking, but it was almost entirely reflex. In times like these, emotions are pushed to the back. There are things that must be done first. It was the same in the past. Even when faced with the inside of a machine turned pitch black by toner, the first priority was confirming the cause and the prospects for recovery.

It's okay, it's going to be okay.

A voice came out, and I don't know if I was saying it to myself or to my mother. My mother had a look of apology on her face. She probably doesn't know that seeing that look is the hardest thing for me.

Blaming her won't bring anything back. Rushing her won't do any good either. That is precisely why I make sure my voice, at least, does not waver.

I prepare a change of clothes. I support her body. I gather the soiled items. I wipe the floor. I open the window a little. If I write it like this, it sounds like a procedure, but in reality, it doesn't go that smoothly. In the middle of it, my mother asks the same thing. She says she is cold. She says she is anxious. Each time, I stop what I am doing and then go back to it.

Morning caregiving is not a straight path. It is like choosing, on the spot, at every turn of a narrow road full of branches.

By the time I had finished cleaning up, the sky had already turned the color of morning. In the outside world, this is probably the time when the day is just beginning. In that same morning, I have already finished something that is more than just a single task.

No, I haven't finished. This, too, is still in the middle of things. Breakfast, medication, checking her condition, the plans for the rest of the day. There is almost no morning that goes according to the schedule. Even so, I cannot afford to have no schedule.

I stand in the kitchen, listening to the sound of the washing machine. I think that the day has begun again. But at the same time, I also think that I have made it this far today as well.

The safety of this moment is much more fragile and much heavier than when I was young. She didn't fall. She didn't get hurt. We made it through the morning. That alone is heavy enough.

In this life, morning does not begin quietly. It is placed upon slightly ragged breath, dragging the continuation of the night along with it. It does not wait for me to get myself together. So, I move on to the next step.

Handover notes: Morning is not always something you prepare for and welcome; there are days when you must accept it while it is still in disarray.

Chapter 3: Facing the Morning That Returns to a Blank Slate

Record Time: 7:41
Event: Repeating the same explanation from the beginning again
Response: Calling out, confirming, preparing, watching over
Notes: Even if yesterday disappears, the morning comes again

It was after breakfast. Just when I thought I could finally take a breath, my mother suddenly looked at me.

"What are we doing today again?"

The way she said it made me stop time for a moment. I had talked about it last night. I had talked about it this morning. I had talked about it just a moment ago. But, inserting feelings of blame wouldn't start anything.

"It's day service today."

I answered as gently as possible. Then, my mother looked a little relieved and said, "Oh, that's right." But that relief didn't last long. In a few minutes, we would be back to the same morning again.

It's a blank slate. It returns to a blank slate so perfectly. The stories from yesterday, the words exchanged this morning, the confirmation from just a moment ago—they have all vanished cleanly. It just leaves me with the feeling that only eraser dust is dancing in the air.

I know the word dementia. But actually receiving it in the light of every morning was a different story. There is a deep chasm between knowing something as knowledge and having it presented to you repeatedly in daily life.

My mother isn't at fault. I know that. Even so, a small fatigue accumulates deep in my chest. It is not the fatigue of my explanation not reaching her. It is the fatigue of what reached her not remaining.

Back when I worked in repair, machines where the malfunction couldn't be reproduced were the most troublesome. But what is in front of me now is not a machine. It is not a malfunction that won't reproduce, but the memory itself that disappears.

My mother looks at her clothes and asks, "Is this okay?" I answer, "It's fine." A few minutes later, she asks the same thing again. The same exchange connects like a ring, overlapping within the morning.

I think what is being tested here is not kindness, but endurance. Most people can be kind once or twice. The problem is the tenth or twentieth time.

While getting ready to go out, my mother suddenly talks about the past. She speaks more vividly than in our conversations until just now. In her face at that moment, a light shines that is different from the anxiety she had until just now. It spills out from new memories. Deep within old memories, she is still alive.

As the pickup time approaches, I line up her shoes, check her bag, and call out to her once more. My mother stands up with a slightly nervous face. Even though it is the second time, it is close to the first. No, for her, it is truly the first time every single time.

I say, "It's okay." I don't know how many times I've said these words today. But perhaps it is better not to count. If I expect them to remain, I am the one who gets worn down. If they don't remain, but she felt a little relieved in that moment, that is enough. There are mornings where I have no choice but to think that way.

It returns to a blank slate. Every time it does, I rewrite it again. Instead of having her read the continuation of yesterday, I offer the first line of today, over and over again. Caregiving for dementia is similar to that kind of work.

As I see my mother off at the entrance, I think. This morning, too, is moving forward while losing something. But at the same time, it is not just being lost. Even if she forgets, the eyes that search for me in her anxiety remain.

And there is no answer waiting at the end of that repetition. All there is, is just the next morning.

Handover Notes: In the face of disappearing memories, offer the same words as if for the first time, no matter how many times it takes.

Chapter 4: The night I felt the weight of that decision

Record time: 21:36
Event: Facing documents regarding life-prolonging treatment and resuscitation
Action: Receiving explanation, reading, hesitating, thinking, signing
Note: Deciding is not the same as cutting ties

That night was quieter than usual. After my mother had fallen asleep and the sounds in the house had mostly faded, I looked at the papers placed on the table.

There were only a few sheets. But it seems the weight is not determined by the number of pages. What was written there was about a time further ahead. When the condition changes suddenly, how much treatment do you want? How do you think about resuscitation? How do you accept life-prolonging measures? In short, it was a question of what we would choose when life hangs in the balance.

I had thought such things were matters for a much more distant future. But my turn had come. Quietly, in a way that offered no escape.

While receiving the explanation, I nodded many times. It wasn't that I didn't understand the meaning of the words. Rather, it was painful precisely because I did. Each sentence brought with it a scene from the future. To choose was to imagine. To imagine was to touch a parting that hadn't happened yet, just a little bit early.

I have faced various malfunctions in the past. But human life doesn't work that way. Even if there are warning signs, things don't proceed as expected. And above all, what is there is not repair, but life itself.

Looking at the papers, I thought many times: who is this decision for? For my mother? For the family? Or is it so that someone doesn't have to keep struggling with uncertainty in the chaos that lies ahead?

If there were a correct answer, it would be easier. But these things, of all things, cannot be graded later. Was the choice I made the right one? Would it have been better not to choose? I probably will never know for sure.

I can hear my mother's faint breathing from another room. Just by that presence, the words written on the paper suddenly become vivid. Facing this person's future, I am about to leave my mark. At that fact, my hand stops.

I had thought the word 'decision' was something sharper. But in reality, it was closer to taking something on without being able to cut it off. Hesitation remains. Feelings waver. Even so, I have to draw a line somewhere. That was the decision of that night.

I held the pen again several times, and finally wrote my name. It wasn't that my resolve was set the moment I wrote it. It was just that I definitely felt I had taken a step into a place from which there was no return.

I thought I was doing it for my mother. But at the same time, the weight of what I would bear from then on was also included in it. To choose also means to live with that choice afterward.

Even so, when morning comes, caregiving begins again. I am not allowed to stand still, holding only questions that are too big.

That night, I think I didn't so much decide as I did touch. The weight of judgments related to life. The parts of supporting a person that cannot be handled with pretty words.

And that night, I finally learned. Supporting is not just about lending a hand. It is also about not leaving your seat, even while trembling, when the final judgment that might come someday arrives.

Handover note: That hesitation remains after making a decision is not a mistake, but the weight of being human.

Chapter 5: Welcoming tomorrow with a body that cannot sleep

Record time: 3:48
Event: Even though I should be sleeping, only my consciousness is awake
Action: Closing eyes, drinking water, tossing and turning, listening intently
Note: Resting and stopping are different

Tossing and turning for the umpteenth time in the middle of the night, I realize I am still awake. I know it without looking at the clock. Time when you cannot sleep has a unique texture.

Since I started caregiving, I no longer trust sleep the way I used to. When I was young, sleeping meant switching off. It is different now. Even when I am asleep, a part of me remains awake. There are nights when my ears alone stand guard.

The creaking of the hallway. The sound of water in the distance. The rustle of bedding. My nerves are sensitive to the smallest changes in the house.

I get up to drink some water. In the dark kitchen, my hand holding the glass feels a little unsteady. Outside the window, it is dark. The city is quiet. But my body, somewhere, is still on duty.

I used to have a similar feeling when I came home and went to bed after a night shift. Back then, it was the echo of work. It is different now. What remains in my body now is not work, but life itself.

The fatigue of caregiving does not manifest like muscle pain. But I think the truly troublesome part is the tension that won't go away. Even when nothing is happening, my body is waiting for something to happen next. So, even when I intend to rest, I am constantly prepared for something.

Still, morning comes. My condition has nothing to do with caregiving. The other person's anxiety, physical condition, fluctuations in memory, schedule, and mood for the day—those things take precedence in the morning.

Sometimes, I wonder myself how I keep going. It is not because I am noble. It is not because I am strong. There are days when it feels like I am just moving because I cannot stop. But people, surprisingly, manage to keep going with just that.

I return to my futon. I don't think much about whether I can sleep or not. I just lie down. I close my eyes. My ears are still awake, but I lie down anyway.

Tomorrow comes from the other side. It arrives there before I can go to meet it. Even so, I stand before that morning, still sleep-deprived. Even after a night when I couldn't sleep properly, I go to the kitchen, boil water, and open the curtains.

Living with what cannot be fixed may not be a matter of dramatic resolve. Rather, it is about starting the morning preparations even without sleep. It is about starting today without raising my voice, even with a tired body.

Handover notes: Even on nights when you cannot sleep, the morning preparations will not wait.

Chapter 6: Still wanting to feel the seasons

Record time: 16:22
Event: Pausing in the wind outside the window during a break from caregiving
Action: Bringing in the laundry, looking at the sky, taking a deep breath
Remarks: Even as life thins out, the seasons do not cut corners

The more tired I am from caregiving, the less I should be concerned about the seasons. Originally, that is how it should have been.

Moving from the morning, staying alert, and explaining the same things over and over, the day is quickly whittled away. Before I know it, it is afternoon, and evening is near. There are days when I cannot remember later whether the weather outside was sunny or cloudy.

Perhaps this is what it means for life to become narrow. The number of times I look at the sky decreases. The time I spend noticing the scent of the wind decreases. Even though the seasons are arriving, the space within me to receive them is gradually shrinking.

Even so, I sometimes want to feel the seasons.

For example, when I was bringing in the laundry. When I stepped out onto the balcony, the wind had changed slightly. It was not the dry wind of the end of winter. Noticing that alone made the depths of my chest loosen slightly.

When I was young, the seasons just came on their own. It is different now. If I do not go to receive them, the seasons just pass by outside the window.

Even so, there are times when I suddenly stop at the color of a flower or the way the evening sky stretches. For that one moment, I confirm that while I am a caregiver, the person outside of that role has not yet disappeared.

I think that feeling the seasons is a way of slightly resisting the flow of daily routine. I am still feeling them. I am still watching them. I still have room within myself to take them in. It is an act of confirming that.

Of course, there are days when I have absolutely no room for that. But even so, the fact that the seasons exist outside serves as an escape route somewhere for a heart that is starting to close off.

There is no clear end in sight for caregiving. It is not an effort to make things better, but a continuous support to keep things from getting worse. Perhaps that is why people sometimes want to let a different kind of cycle pass through their bodies.

I sometimes stop washing the dishes and look out the window. At a time that was pitch black just a little while ago, the color of the sky still remains.

Right now, I am living within caregiving. But to become someone who is only about caregiving is probably not quite right. I also want to be someone who feels the wind. I want to be someone who notices the color of the sky.

When life becomes heavy, people want to keep only useful things at hand. But if you live only by whether things are useful or not, your heart will wither first.

In the evening, I reach for the laundry I brought in. The scent of the outdoors remaining on the fabric is just a little closer to spring. I accept it silently. I simply confirm that there was still room for the season within this day.

I want to keep from losing such small sensations. Especially if I am to live with things that cannot be fixed.

Handover items: Sensations that seem useless keep the heart from drying out.

Chapter 7: Things I could not fix when I was a CE

Record time: 18:47
Event: Memories of old work tools return unexpectedly
Response: Look back, trace, put into words
Notes: The hands from when I thought I could fix things still remain a little

I worked in repair for a long time. A customer engineer for fax machines. I stood in front of broken machines, searched for the cause, fixed them, and made them work again.

If I say these words now, it sounds like a story from a distant era. But it still remains in my body. The smell of paper. The blackness of the toner. That feeling of guessing which part is suspicious the moment I hear an abnormal noise. Work, surprisingly, settles into the body before the mind.

If I was called, I went. I would head to the client's site, look at the state of the machine, and isolate whether it was a usage issue, a hardware failure, the line, or the other party. What is wrong? How far is it broken? What should I do now to at least get it running? I was quite used to thinking about that order of operations.

Even so, it was still easy to understand. The opponent was a machine. There were habits in how it broke, paths to the causes, and a possibility of improvement if I followed the steps. I did not dislike that job. In fact, I think I quite liked it. I liked the fact that things could be fixed.

That is why I think I was convinced somewhere along the way. That in this world, there are causes, there are procedures, and there are many things that can be managed. That way of thinking was useful for work. But there are places in life where it does not apply.

A parent's aging was the prime example of that.

Dementia, accidents with excretion, night calls, hospital visits, paperwork, and decision-making—none of these are "unknown causes." But just because you understand them does not mean you can fix them. This is where it is decisively different from repair work.

You cannot replace parts. You cannot initialize. There is no such thing as returning to normal by restarting. In the face of those changes, I, with my CE habits, end up looking for procedures. What can I do to make it better? What can I adjust to help it recover? But there are many situations where that question ends in vain.

My parent's aging is not my failure. I know that. I know it in my head. But for someone who has been on the "fixing side" for a long time, I have not learned how to give up when faced with a reality that cannot be fixed.

Even so, I have kept working. I have hands. I have feet. I can make judgments. There was a time when being able to think that way kept my life hanging by a thread.

That is precisely why I think about it now, facing caregiving. Perhaps I have spent my whole life standing before things that are broken.

However, there is a difference between the past and the present. In the past, I went to the scene thinking I might be able to fix things. Now, I head there knowing they might not be fixable. This difference is significant.

When I was a Clinical Engineer, I found value in being useful. That hasn't changed. But when you are caregiving, there are times when just being useful isn't enough. Being there. Explaining the same thing over and over. Not leaving your seat in front of paperwork that has no right answer. Facing the morning without having slept. These are a different kind of work from "fixing."

At this age, I am finally beginning to learn. People are not left helpless even in the face of things that cannot be fixed. Even if you cannot return things to how they were, you can get through today together. Even if you cannot stop the deterioration, you can ease the anxiety a little.

Come to think of it, perhaps I was too focused on "restoring" things. Back to normal. Normal. The previous state. Those words are reliable in the world of machines. But in life, they are sometimes cruel. People cannot go back. My mother cannot go back. I cannot go back to the person I was when I was young.

Even so, I don't think my past work was a waste. Because I spent time as a Clinical Engineer, I believe I am able to face things that are breaking down without easily looking away.

However, unlike in the past, I don't think "it should be fixable" until the very end. What I am holding now is something that cannot be fixed. But just because it cannot be fixed doesn't mean it should be abandoned.

I am finally beginning to learn that, now that I have finished my time as a Clinical Engineer. Even when facing things that cannot be fixed, people are not left standing there empty-handed. There are words. There is a gaze. There is a way to accompany someone, not just a procedure.

Handover notes: Even in the face of things that cannot be fixed, people are not empty-handed.

Final chapter: Even so, people write

Record time: 23:11
Event: At the end of the day, finally sitting at the desk
Response: Remembering, searching for words, writing, erasing, writing again
Remarks: Perhaps people write more on days when there is little left to save

At night, I finally have time to sit down. After my mother is asleep, the atmosphere in the house gradually quiets down, the dishes are done, and I have gone through the plans for tomorrow in my head, I sit at my desk.

Just because I sit down doesn't mean something comes out right away. I am tired. I am sleepy. No, it's not just that I'm sleepy. There are many nights where some part of my body stays awake, while only my heart sits down in the chair a little late.

Even so, I try to write. I know I should go to bed earlier. There is no guarantee that tomorrow morning will start quietly, either. Even so, I face the desk.

Perhaps I am trying to organize something by writing. In the field of caregiving, too many things go wrong. What I explained disappears. Sleep is shallow. Plans fall apart. I don't even know if it was the right decision afterward.

I don't want to return a day like that to the darkness just as it is.

Writing doesn't make caregiving any easier. It doesn't bring back my mother's memory. It doesn't make my own fatigue disappear. Writing is not a panacea. I know that well enough by now.

But if I don't write, even the things that were surely there will sink away as if they never existed.

When I was young, I did work with clearer results. But now it is different. In caregiving, there are many days when words like "fixed," "completed," or "resolved" don't fit. I managed to get through today without things breaking down too much. I managed to get through the day. There are days that can only be expressed by the accumulation of such small words.

I don't want those days to end as mere exhaustion. Perhaps that is why I write.

Writing is not a repair. But writing has a different function. It gives a faint outline to things that have scattered.

It is not a technique to pretend things never happened, either. I think it is about continuity. To accept the crumbling daily life, in its broken form, just for today, and pass it on to tomorrow. Writing might be such a modest act of bridging.

At my desk, I write and erase over and over. There are nights when I cannot express myself well. Even so, I leave at least one thing behind. The scent of today. The voice of today. The weight of today. I place at least that much on the paper.

My old tool bag used to hold the tools I used on-site. What I have in my hands now is much less reliable. Just words.

That is why I write. Because even when faced with things that cannot be fixed, I do not want to end by just standing there in silence.

The night continues. Life continues. Aging and caregiving do not end easily. But within the things that do not end, people can sometimes possess their own words. They are small. Unreliable. Yet, they are certainly in my hands.

Relying on that small, light-like thing, I head toward the next morning. I am living, holding onto what cannot be fixed.

Recording finished
Life continues, while holding onto what cannot be fixed.