Maybe We Could Just Keep Living Like This

Today, for the first time, Tonton called one of her support workers by name.

“It's Ms. ○○.”

She is the support worker who has been coming on Mondays and Fridays.

She had also come yesterday for an extra visit, and I noticed something different then.

She was wearing a name tag.

“Have you always worn a name tag?”

I asked.

“Today is the first time. I thought it might help her remember my name,”

she said with a smile.

And today, when she arrived, Tonton said her name for the very first time.

Today, our regular support worker brought another female support worker with her.

Starting next month, we plan to have a support worker come every weekday. The person who has been coming on Mondays and Fridays will continue on those days, and the new support worker will cover other days of the week.

To prepare for that, our regular support worker showed her new colleague how she helps Tonton, explaining the routine as they went along.

At one point, the two support workers and Tonton were sitting together on the sofa, just the three of them.

One of the support workers said,

“It's like a girls' get-together.”

And that really was how it felt.

While our regular support worker helped Tonton with her meal, her colleague watched and took notes.

In between helping her, they played games with Tonton and chatted with her.

Tonton looked happy, too.

There was something else that surprised me today.

Tonton was being wonderfully affectionate with her regular support worker.

When she arrived, they walked into the living room holding hands.

As the support worker helped her eat, Tonton playfully poked her with a finger.

When she began to feel sleepy, she leaned against her.

Even the support worker was surprised by how affectionately Tonton was behaving.

I think that, over the course of these repeated visits, Tonton has become very comfortable with her and has come to feel safe in her company.

Watching the two of them made me happy, too.

And then a thought came to me.

Maybe we could just keep living like this.

Right now, Tonton lives at home.

On weekdays, she goes to her usual day program, and a support worker comes after she gets home.

They prepare dinner together, she gets help with her meal, and they play games.

On weekends, she can go out with me, too.

When I see her enjoying herself as she did today, with each person giving her their individual attention, I cannot help wondering whether it would be difficult to have this kind of time in a group home.

Of course, I believe group homes have their good points, too.

But right now, the Tonton I see in front of me looks so happy.

I am currently on leave from work.

Until now, I have been thinking about our future on the assumption that I would return to my job.

That is also why I have been looking for a group home.

If I return to work, I may be able to continue earning an income through a reemployment arrangement after the usual retirement age, working until I am nearly seventy.

Thinking about how we will support ourselves in the years ahead, I had felt that was the more practical choice.

But watching Tonton today made me wonder whether there might be another option.

I could remain on leave until I retire at sixty.

After that, we could live mainly on my pension.

Our income would be lower.

Even so, I could stay at home and continue our life together, with help from support workers.

Perhaps that is a life we could choose, too.

Perhaps Tonton would enjoy that life more.

Once I began thinking that way, I found myself wondering whether my wish to return to work was only for my own sake.

Would going back to work be selfish of me?

Of course, working and earning an income is also a way of supporting our future life.

And returning to work would not necessarily be bad for Tonton.

Still, when I see her looking so happy right in front of me, I no longer know whether changing our life as it is now would really be the right thing to do.

At the same time, there is something else I have to think about.

Her life after I am gone.

As long as I am well, I may be able to sustain the life we have now.

But I will not always be able to stay by her side.

That is precisely why I have been looking for a group home.

I want to find a place now where Tonton can feel safe and live with peace of mind, even when I am no longer here.

That wish has not changed.

And watching Tonton today brought another thought to mind.

I think she has become so affectionate with her regular support worker because of those repeated visits and the relationship they have gradually built.

If so, perhaps the same thing could happen in a group home.

Even if it feels unfamiliar at first, perhaps seeing the staff every day and spending time together would help her feel safe there, calling them by name and showing them affection.

When I think of it that way, I cannot say that moving into a group home would necessarily be bad for Tonton, either.

And there is one more thing I cannot stop thinking about: Japan's intensive home-visit care service for people with severe disabilities.

I looked into whether Tonton could use it before, but was told that her assessment score did not meet the required threshold and that she was not eligible.

As I wrote in Episode 7, our support planning consultant said she wanted to keep looking for a way for Tonton to access the service, taking possible changes to the system into account as well.

If she could become eligible for intensive home-visit care.

Tonton could receive the support she needs while continuing to live in our home.

And I might be able to return to work.

The life we have now, and a return to my job.

Perhaps we would not have to give up either one.

But even if the system does change, we do not know when that might happen.

It is not something we can count on right now.

Preparations are underway for support workers to come every weekday starting next month.

With more support than before, I am beginning to see a possibility of gradually returning to work.

I am truly grateful for that.

It gives me peace of mind, too.

And yet, the more support we have, and the more I see Tonton enjoying herself, the stronger my feeling grows that I do not want to change this life.

Should I keep looking for a group home?

Should we choose to keep living at home as we do now?

Should returning to work come first?

What would be best for Tonton?

Today, once again, I found no answer.

But I keep picturing Tonton coming into the living room hand in hand with her support worker, playfully poking her with a finger, and leaning against her when she grew sleepy.

When I see Tonton looking that happy, I cannot help thinking it.

Maybe we could just keep living like this.