The Day I Was Afraid to Hear the Answer

I was waiting to hear back from a group home.

It was the home where Tonton had spent three days and two nights on a trial stay.

Other people were also hoping to move in. The home had told me they would make a decision after everyone had completed their trial stays.

While I waited, the same thoughts kept coming back.

If she could move in, I would be happy.

But if she did, the life Tonton and I share now would change.

If she couldn't, what would we do next?

I felt that neither answer would be easy to take in.

I had first found this home while searching online.

Before that, I had mainly been looking for group homes with nurses on staff, but vacancies were hard to find.

Tonton had also had a trial stay at a home in another area.

The staff there were kind and took good care of her. But when I thought about whether she could keep attending her current day support service, and how they would respond if she had a seizure, living there seemed difficult.

That was when I found this home.

Their information mentioned accepting people with intractable diseases, and they had a vacancy at a location relatively close to our house.

I went to visit on my own first.

During the visit, a staff member noticed that the room was a little warm and adjusted the air conditioning straight away.

It may seem like a small thing.

But for Tonton, room temperature matters to her health.

I was glad they had noticed and responded without being asked.

There was also a staff member who knew about epilepsy, and we were able to talk about what to do if she had a seizure.

I thought, this might be the place.

After that, Tonton went for her three-day, two-night trial stay.

On the first evening, at around 8:30, the home called me.

They told me she had stopped responding as she had been earlier, and her gaze had become fixed.

They thought she might be having a seizure without convulsions. Following the written instructions I had given them beforehand, they had administered her rescue medication, Supizia.

Of course, hearing that she might have had a seizure worried me.

At the same time, I felt reassured that the staff had noticed the change in Tonton and had checked the instructions I had provided as they responded.

Early the next morning, I went to the home to drop off more medication.

A staff member said to me,

“She's still asleep, but would you like to see her before you go? You must be worried.”

I was grateful for those words, too.

I had planned only to hand over the medication and leave. But they had also thought about how worried I might be.

Through these exchanges, I found myself hoping more and more that Tonton could live at this home.

But when I picked her up at the end of the trial stay, the staff told me that at some meals she had eaten almost nothing. They said it had been difficult when she didn't respond to them as they spoke to her during meals.

Hearing that, I thought,

Oh. This probably isn't going to work out.

If the staff were struggling, they might tell me they couldn't accept her.

That was how I felt.

Then the home's manager, a man, showed me a photo on his smartphone.

Tonton was smiling as she spent time with the other residents.

He said that as she became more comfortable there, they might gradually be able to communicate with her more easily.

Seeing that photo brought back a little hope.

When we got home, I asked Tonton,

“How was it?”

She said,

“Everyone was kind.”

“Would you like to stay there again?”

When I asked, she nodded.

Then perhaps, if they could have a little more time to get to know her.

That was what I hoped as I waited for their answer.

Then, one day,

I noticed a missed call on my phone.

I had been in another room when it rang and hadn't been able to answer.

The call history showed it was from the group home.

I went to call back, then hesitated.

If I just waited, perhaps they would call again.

I hesitated for a while. But whatever the answer was, I couldn't move forward without hearing it.

I braced myself and called back.

“We can't offer her a place right away.”

That was the answer.

They went on to explain something about why another person had been offered the place, but I couldn't take in anything more.

What brought me back to the conversation was,

“We have a vacancy at a home in another city. Would you be interested?”

They then put me through to the person responsible for that area, who continued explaining about the home.

Still unable to shift my feelings, I murmured acknowledgments while searching desperately for the location on Google Maps.

More than an hour's drive from our house.

That's far, I thought.

They offered a date for a visit, and I booked it there and then.

After I hung up,

“Ah. So it didn't work out after all.”

The words came out before I could stop them.

But almost immediately, I began thinking about other things, too.

Could she get to her current day support service from there?

If she couldn't keep going, how would her daily life change?

Even so, if there were good people there, I might want to entrust her care to them.

One thought after another came into my mind.

And being offered another home meant that the company running the homes hadn't ruled out accepting Tonton altogether. I felt there was still a possibility.

That day was one of the two days a week when our home care worker came.

Tonton was spending the day at her usual day support service.

When the care worker arrived, I told her I had heard back from the group home.

“In that case, finding a group home looks as though it may take a little longer. Let's go ahead as planned and prepare for care visits every weekday from next month,” she said.

At present, she comes twice a week. From next month, we are planning to have care workers come five times a week.

She told me she had also spoken by phone with our support planning coordinator to prepare for that.

She shared something from their conversation.

“When I told the coordinator that Tonton helps me prepare dinner, they were surprised.”

Recently, Tonton has been standing beside the care worker in the kitchen, helping to prepare dinner.

Later, while the two of them were standing together in the kitchen, I called the support planning coordinator.

I had heard that support for attending her day service had also come up in their earlier conversation, and I wanted to hear more about it.

During our call, the coordinator brought up Tonton's helping to prepare dinner.

“When I heard that, I nearly cried,” they said.

I told them exactly what I had been feeling about our life now.

“The life we have now is wonderful in its own way. But to return fully to work, I need to find a group home. I don't really know what's best anymore.”

I'm not looking for a group home because I dislike our life now.

If anything, since the care worker started coming, new things have gradually become part of Tonton's life.

Even so, I have to return to work.

Wanting to keep living this way, and knowing how difficult that is, are feelings I carry together all the time.

Then the coordinator said,

“I still think intensive home-visit care would be the best option. I'd like to keep exploring whether we can find a way in that direction.”

I was a little surprised.

Intensive home-visit care was a service I had looked into myself when Tonton and I first started living together.

But I had been told that she didn't have the required assessment score and wasn't eligible.

The same coordinator who had told me then that it would be difficult was now saying they wanted to work toward that option.

“Is there a realistic chance of making it happen?”

I asked.

“It would require a change in the law,” the coordinator replied.

This wasn't a conversation about a service we would be able to use soon.

But they said that the service itself hadn't always existed, and expressed the hope that the need for it among people like Tonton could also be recognized.

At some point, that day's phone call had become a planning session about our future.

First, we would continue preparing, as planned, for care workers to come five times a week from next month.

In the meantime, we would keep looking for a group home.

And even if Tonton could move into one, we wouldn't stop there. We would keep exploring a path toward using intensive home-visit care, too.

By the time I hung up, I felt lighter. While on leave from work, I don't talk to many people, and being able to share all the feelings that had been weighing on me had helped clear my head.

I hadn't received the answer I had hoped for. But by the end of that day, I was able to think about what to do next.