Self-Introduction | Three Things I Realized After Experiencing Both the Caregiver and Care Receiver Sides

Why I am sharing information about "caregiving misunderstandings"

Hello.

I am Yorisoisan | Misunderstanding Translation Room.

First, please let me introduce myself.

I previously worked in the welfare field as a certified care worker and life counselor.

I was involved in supporting the daily lives of users, consulting and coordinating with their families, creating care plans,

and managing facility admissions.

After that, I developed ALS and became someone who receives care.

In other words, I have experienced both the "caregiver" side and the "care receiver" side.

In this note, I will articulate,

even though you are doing exactly what you learned,

and doing exactly what you researched,

why caregiving sometimes doesn't go well, from the perspectives of both the field and the individual involved.

My Perspective

What I want to share is not some kind of special, magical caregiving.

Why is it that even when I follow the textbook, it doesn't seem to reach them?

Why is it that even when I try my best, the other person's reaction isn't good?

Why is it that even when I mean well, we end up missing each other?

It is about re-examining the "small gaps" that exist within such caregiving.

Caregiving techniques are important.

But before that,

I believe we need a perspective that checks whether it is truly suitable for the person in front of us.

What I Value

I value the following three things:

・Never leaving the individual's feelings behind

・Not taking the circumstances of families or the workplace lightly

・Continuing to think, even when there is no clear answer

In a nutshell,

I value "care that doesn't leave people behind just for the sake of being 'right'."

The individual's wishes, the family's anxieties, the realities of the workplace, and the limitations of systems and environments.

I have continued to think about how to find a compromise in the field of social welfare.

Welfare work is not about "doing things for others."

I believe it is a job of thinking about how to connect a person's life with their reality.

The gaze of a user I still cannot forget

There is something I still cannot forget.

There was a time when I had to guide a user to a different service provider,

even though it was not what they wanted.

There were reasons for it, such as the care environment and the wishes of their family.

At the time, I simply went along with the opinions and decisions of those around me.

However, I still cannot forget the look on that person's face.

"You didn't help me."

They didn't say those exact words.

But that is how they were looking at me.

Even now, I don't know if that decision was the right one.

But the fact remains that I could not fulfill their wishes.

Because of that experience,

I know the fear of easily declaring, "This is the right thing to do."

Since developing ALS, the scenery I see has changed.

In April 2017, I was diagnosed with ALS. The onset was in September 2016.

In my case, it is hereditary, and I had seen my mother's condition.

That is precisely why I knew, on some level,

about the changes that might happen in the future.

I was scared.

Even so, at the time, I could not face reality and was running away from it.

At the same time, I was putting on a brave face for those around me.

I think I was just getting through each day without having come to terms with it myself.

Eventually, despite my desire to keep working, I had to resign.

I felt frustrated, but more than that, I was left with a sense of guilt.

My boss and colleagues at work, my family, relatives, and friends.

I will never forget my gratitude toward those who supported me.

And so, I went from being the one who supports to the one who is supported.

About my current life

Currently, I live with almost total assistance. (July 2026)

I have a gastrostomy, a tracheostomy, and have undergone glottic closure surgery, and I am on a ventilator.

Because my vocal cords have been removed, I cannot speak aloud.

I spend most of my day in bed,

and I operate my computer while in a sitting position in bed.

I use a trackball mouse with both hands to input data on the computer.

Rarely, I also go out for walks in a reclining wheelchair.

My meals are primarily through tube feeding, but

I also enjoy eating light snacks and treats by mouth.

In rehabilitation,

I am working on practicing time off the ventilator,

and I recently achieved 30 minutes of ventilator independence.

I practice standing for about two to five minutes.

There is a limit to what I can do.

Even so, I live my life while confirming one by one what I can do with my current body.

Precisely because I receive care in this kind of life,

I realize that small differences in care,

have a significant impact on both the body and the mind.

Relying on others is harder than I thought

When I was working in the welfare field, I truly believed it.

"Please don't hesitate to let me know when you're in trouble."

But after I became the one being supported, I realized.

Relying on others is much harder than I thought.

There are things I want to ask for.

However, the other person is also busy.

Would it be a bother if I asked for this?

Maybe it doesn't have to be right now.

While thinking that, sometimes my words stop.

But if I don't rely on others there,

I might end up causing even more trouble later on.

This conflict was something I didn't see,

even though I thought I did, when I was on the supporting side.

There are things that are conveyed through a touch.

After becoming someone who receives care, I understood clearly.

The difference between someone who can provide care tailored to the individual,

and someone who just provides care by the book and finishes.

That difference is felt by the person receiving it.

This is not just a matter of being skilled or unskilled.

Are you trying to adapt to the other person?

Are you checking if you are on the right track?

Are you looking at the person right in front of you?

Or has your goal become just to finish the procedure?

Strangely enough,

how much the other person has thought about me and how much effort they have put in,

often comes through during care, through the hands that touch me.

I can even feel their thoughtfulness.

Even when busy, there are people who ask, "Is there anything else?"

There are people who check not just once, but multiple times.

With such people, I feel a sense of security knowing they are truly focused on me.

Conversely, there are times when I have no opportunity to be asked, and no room to voice my needs,

leaving me with no choice but to give up.

I tell myself it can't be helped because they are busy too.

Even when I try to think that way, a sense of discomfort remains in my body and mind.

The thoughts behind the 'Misunderstanding Translation Room'

I put a certain thought into the name 'Misunderstanding Translation Room'.

Even though I am doing things properly, just as I learned and researched,

for some reason, it doesn't go well.

Even though I am trying my best, for some reason, it doesn't reach the other person.

The reason for that might lie in something more fundamental,

that exists before the technique itself.

Are we unconsciously providing things as care,

that are unpleasant or negative,

things we would never do to ourselves?

Whether or not you are aware of it changes how care is received.

I believe that “care that is accepted and appreciated” is nothing extraordinary.

It is about being sincere and honest.

It is about trying to understand the other person's personality and the appropriate distance to maintain.

It is about not overlooking reactions that cannot be put into words.

It is about repeating necessary confirmations without finding it a bother.

When you change your perspective, both the way care is provided and the other person's reactions change.

A place where your view on caregiving changes a little

From now on, in this note, I will translate the small misunderstandings that occur in caregiving,

one by one.

“I’m doing it properly, so why isn’t it working?”

When you feel that way,

it is not just that your skills are lacking,

Between the person providing care and the person receiving it,

there may be small misunderstandings hidden.

I do not wish to prove that one side is right.

What is happening to the individual?

What are the caregivers struggling with?

I will continue to leave behind materials for judgment

to think about that space together in my own words.

Especially for care workers who provide direct care in facilities or hospitals,

and want to use the individual's small reactions for their next care.

Instead of ending it with "refusal," "the person's mood," or "compatibility,"

• what to look at next

• what to confirm with the individual

• what to change in the care provided

• what to record and pass on to the next person

I have compiled a practical guide to help you think about these things.

Yorisoi-san | Misunderstanding Translation Room

#Life
#Living
#Caregiving
#CaregivingWorries
#CaregivingIsDifficult
#ThinkingAboutCaregiving
#CaregivingBeginner
#FamilyCaregiving
#HomeCare
#CaringForParents
#CaregivingProfession
#CaregivingSite
#Care
#PersonCenteredCare
#TrySki
#LearnFromThisExperience
#WhatILearned
#CertifiedCareWorker
#ALS
#SelfIntroduction
#MisunderstandingTranslationRoom