Similar accident to yesterday happened today again. I could stop it
because I was in the hospital.
I joined to bath him for the first time. Leaning the special bed a
little towards the bathtub, and showering on his body. During washing
his hair, his head was stayed on the pillow. However, how to wash was
very terrible. I felt they did not think they were washing a person's
head.
They did not care water splashed to his eyes, without any care,
washing his ears. Hajime already had a lot of pain some part of his
body which muscle was already weakened and not moving. But it was not
cared at all. Hajime cannot say anything. I thought it must be very
difficult for him when he is alone.
This hospital is for children, but they do not have any ALS patient.
So they do not have any knowledge of ALS. Never known how the ALS
patients feels, and how to care. It is too bad for Hajime.
Today, he was crying many times.
Anger to the disease, nurses not understanding the disease, to himself
cannot do anything by his own. He showed his anger. We cannot hear his
sound because he cannot let his voice out. But he had crying hiccups,
even... he was crying this much.
They say big things, but with no techniques, I care. I wonder if it is
good for Hajime to continue things like this everyday. I really
wonder.
For Hajime, having a disease progressing everyday, "this moment" is
more important rather than think about future.
How great it would be if we can fully live NOW.
I want to see Hajime's smile...
Translated by Satoko Okamoto
Jul 31, 2011
Jul 30, 2011
The Problems That Come Up Everyday
Now about this hospital that we’ve been transferred to, it’s concerning me that there have been a few troubles.
The system of the hospital, everything is different and besides not getting used to the place or the people, the difference in the medical equipment they use and the different protocols they have is confusing and is causing me to feel quite upsetting.
Today we already had trouble.
For the past two days, also because it was Hajime’s wish, we didn’t stay at the hospital and went home.
(It’s been two months since we went home together.) It’s a problem that happened the following morning…
Hajime is practicing to take off the ventilator, and he only does this when somebody was around.
However, this morning it was different.
They took the ventilator off for two hours without anybody around.
This should never happen.
It’s too late when something happens.
What’s even more upsetting is that during these two hours, they bathed him.
At the condition that Hajime is in, he should never be bathed without the ventilator on him.
Hajime was terrified.
And there’s more, the part of the body that needs the most care,
his neck and left arm were rough handled and it hurt him pretty badly.
He was crying when he told us about this.
Because Hajime hates this place so much, being biased made him feel even more depressed.
My husband’s emotionally exhausted from all these problems that have been happening daily.
Tonight, I’m spending the night, so I hope that we could avoid the troubles that may happen tomorrow.
Hajime was crying a lot today too.
He was expressing his anger toward this disease that he has.
Translated by Christine Shirota
The system of the hospital, everything is different and besides not getting used to the place or the people, the difference in the medical equipment they use and the different protocols they have is confusing and is causing me to feel quite upsetting.
Today we already had trouble.
For the past two days, also because it was Hajime’s wish, we didn’t stay at the hospital and went home.
(It’s been two months since we went home together.) It’s a problem that happened the following morning…
Hajime is practicing to take off the ventilator, and he only does this when somebody was around.
However, this morning it was different.
They took the ventilator off for two hours without anybody around.
This should never happen.
It’s too late when something happens.
What’s even more upsetting is that during these two hours, they bathed him.
At the condition that Hajime is in, he should never be bathed without the ventilator on him.
Hajime was terrified.
And there’s more, the part of the body that needs the most care,
his neck and left arm were rough handled and it hurt him pretty badly.
He was crying when he told us about this.
Because Hajime hates this place so much, being biased made him feel even more depressed.
My husband’s emotionally exhausted from all these problems that have been happening daily.
Tonight, I’m spending the night, so I hope that we could avoid the troubles that may happen tomorrow.
Hajime was crying a lot today too.
He was expressing his anger toward this disease that he has.
Translated by Christine Shirota
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