I Heard Tonton’s Voice from Another Room

I heard Tonton talking from another room.

I think it was the second day a care worker came to our home.

I was in the same house, but I spent about an hour in a different room from Tonton and the care worker.

I could not really make out what they were saying.

I could just hear Tonton talking about something with the care worker.

As I listened, I went about my own things.

Thinking back, it had taken about two months to reach this point.

As soon as Tonton and I began living together on our own, I started looking for home-help support. It took roughly two months before a care worker actually came to our house.

Tonton and I began living together on our own about two months ago.

The circumstances that led to this involve our family, so I have decided not to write about them in detail here.

But when I decided that the two of us would live together, my work immediately became a practical concern.

Tonton attends a day support service.

I can see her off in the morning and then go to work.

The problem comes afterward.

The time Tonton gets home does not match the time I can return from work.

There are meals, baths, and medication to think about, too.

My work also involved overnight business trips.

I could not manage our life together on my own while continuing to work as I had before.

The first person I spoke to was our support planning coordinator.

Alongside looking for a group home, I asked whether we could use a disability welfare service called home-help support, or kyotaku kaigo.

My initial thought was that if we could get support from as early in the morning as possible until nighttime, I might be able to retain some flexibility in my work.

But I was told that finding a care worker for the early morning hours would be difficult in practice.

In that case, I would see Tonton off to her day support service in the morning, then go to work.

A care worker would look after her once she returned home, and I would be back by around 9 p.m., when she goes to bed.

I would also ask my employer to adjust my working hours.

I thought that arrangement might make it possible to balance work with our life together.

But the question of overnight business trips remained.

So I also looked into another disability welfare service called intensive home-visit care, or judo homon kaigo.

Tonton could stay in our current home and continue attending her current day support service, while I could keep working in something close to the way I had before.

I hoped this service might make that possible.

I spoke with our support planning coordinator and the ward office staff, and contacted other support organizations as well.

However, I was told that Tonton did not meet the requirements needed to use this service.

Needing a great deal of support and meeting the eligibility requirements for a particular service are not the same thing.

That was something I came to understand at the time.

So home-help support was what we needed first.

Our support planning coordinator told me that a care worker might be able to start coming as early as mid-August.

I thought we might manage if that happened, and planned how to balance work and home on that assumption.

Until then, I managed by asking to be taken off overnight assignments and having my working hours adjusted.

Even so, on days when Tonton’s day support hours did not fit with work, I had no choice but to use paid leave.

There were days when family members could help, but that could not continue indefinitely.

Yet by mid-August, we still had not found a care worker.

Being approved for a certain number of support hours does not necessarily mean there is someone available to provide them.

There simply are not enough people.

It is hard to find a provider that can take you on.

Even when someone is available, their days or hours may not match what you need.

In Tonton’s case, we had also requested a female care worker to assist her with personal care.

And Tonton needs various kinds of support in daily life, including help with meals, bathing, medication, and responding to seizures.

It was not a matter of having just anyone come.

At one point, there was talk of combining several providers to cover five days a week.

As all this continued, I ran out of paid leave in August.

Work, Tonton, and other family matters.

Many things were happening at the same time, and by the end of August, it had become difficult to keep everything going while continuing to work.

It was after that that we heard a care worker might be available.

One provider seemed able to offer support five days a week, and we moved ahead with meetings and the contract.

The first care worker came to our home in mid-September.

Having a care worker start coming does not mean I can immediately work the way I used to.

Even so, I felt that the first step toward returning to work, even on a limited basis, had finally begun.

Including today, the care worker has visited four times. Each time, I have stayed home and been beside Tonton.

Preparing food.

Helping her eat.

Playing together.

Bathing.

Taking medication.

As I watched alongside them, I explained things one by one: “This is how we do it with Tonton.”

One thing has stayed with me.

Among the medicines Tonton takes every day, there is one whose prescribed amount needs to be measured out.

After preparing it, the care worker showed it to me and asked,

“Is this right?”

She checked with me before going ahead.

On another day, she used her smartphone to magnify the markings on the container, then showed me what she had prepared once more.

When giving the medicine proved difficult, she also asked whether it would be all right to try a different way.

I did not find these checks bothersome at all.

On the contrary, I felt reassured that she would ask about anything uncertain rather than leave it unresolved.

At mealtimes, too, she waits patiently and follows Tonton’s pace.

When Tonton seemed sleepy partway through a meal, I explained,

“At times like this, we sometimes have her take a bath first.”

Little by little, I found more things to share.

“If there are any places you would prefer us not to open, please let us know,”

she said, taking the initiative to check about things around the house as well.

It felt like a time for us to learn about Tonton together, rather than simply having someone provide support.

On her second visit, I spent about an hour in another room.

From there, I could hear Tonton talking.

To me, it seems that when Tonton feels someone is truly treating her kindly, she gradually opens up to them.

That day, too, she was chatting with the care worker quite naturally.

This is the moment I described at the beginning.

I was in another room, listening to her voice as I went about my own things.

The same care worker has come for all four visits so far.

For now, she is learning, one thing at a time, about Tonton’s meals, baths, medication, and how she usually spends her day.

Two other care workers are scheduled to start coming as well. For the handover, the person who has been coming so far will visit together with them.

When we were talking about that,

“We would like you to be home then, too. You would feel uneasy without meeting the care workers who will be coming, wouldn’t you?”

she said.

She was right.

These are people who will eventually spend time alone with Tonton.

I want to meet them at least once myself.

I was glad she had thought of that before I even said it.

The person who has been coming will get to know Tonton and then pass that knowledge on to the next people.

With that kind of handover, perhaps I can gradually leave things in their hands.

That was how I began to feel.

The plan is for three care workers to take turns, building up to support five days a week.

Starting by trusting one person, and gradually becoming able to entrust her care to several people.

That is the process we are in now.

And today, I asked the care worker,

“What should I do while you are here?”

Then,

“It is absolutely fine for you to stay. Providing care while family members are at home is quite normal with other families, too.”

she told me.

I had been thinking that perhaps I should eventually go out for a while, so Tonton and the care worker could spend time on their own.

But if I had no particular reason to go out, there was no need to force myself to leave.

I stayed home today, too.

I just kept a little more distance from Tonton than before and took care of some things of my own.

I did not keep going over to check whether everything was all right.

Tonton was calmly eating with the care worker.

Afterward, they played together.

She did not come to call for me. The two of them simply spent time together.

I have not returned to work yet.

The other two care workers still need to get to know Tonton.

Will support five days a week really come together and make it possible for me to return to work, even on a limited basis?

I still do not know.

Even so, until a little while ago, I was the only person looking after Tonton most of the time.

Now there is someone in the same house who waits patiently while Tonton eats.

Someone who checks with me when there is anything uncertain about her medication.

Someone who plays with Tonton.

While they do that, I can be a little farther away and attend to my own things.

I have not gone out of the house.

I have not returned to work, either.

That is all I managed to do today.

But as I saw the two of them spending time calmly together, I went about my own things without repeatedly going over to check.

Before I knew it, I was leaving her care in someone else’s hands.

For us, at this point in our lives, I think that is a change in itself.