Today he gave his effort to stand. The PT came about 11:30 and with our support, he tried and got up from his bed.
It’s been about a month since he last stood so he couldn’t stand up straight
for his legs have weakened and his posture was bent at his lower back.
It must have been very difficult, he cried time and time again.
He walked with support for a few steps from the bed to the chair and was sitting there for a few minutes.
I guess it’s difficult for him to sit, he soon said that he wanted to go back to the bed.
But because he did get to sit (after all that effort)….he sat a little more and then he went back to the bed.
It maybe because he wants to go back to bed that from the chair to the bed,
his posture was straight and his father did not have to support him as much on the way back to the bed.
This takes daily practice, so PT from here on forth is going to be difficult.
In the afternoon there was a meeting with the palliative care team.
Before that there was a meeting with Hajime’s ALS doctor.
We discussed about the exams that he would be having from now and as expected my heart hurt.
When I think about how this disease, ALS is going to progress and how Hajime is going to feel, I start crying.
Because we had these two meetings around the same time, we had a very busy day.
These days that are filled with training for the day that Hajime leaves the hospital, is going by very quickly because we’re so busy.
We have to get our house ready as well, but nothing is done.
We have to move everything out of my husband’s room but since we’re always in the ICU we only have time after midnight.
Regardless, I have to do it.
Umph!-I have to work harder.
After that Hajime sat again with his bed turned into a chair.
This time he sat for two hours.
He did really well today.
Translated by Christine Shirota