Hajime's Depression

What is happening with Hajime's night nurse?
They are still looking into it, but we haven't heard a thing.
He had just gotten used to the (old) night nurse, so we are very disappointed.
If we are going to have to change to another nurse, I wish they would hurry up and make the arrangements soon.

We just started the day nurse, so there are a lot of things that we need to get used to.  The communication between her and Hajime is still not smooth.  She is a very energetic person, and she is busy with a lot of other things besides Hajime.
She does do what we ask of her, so we've decided to see how it goes until we get used to her.

Recently, Hajime has been feeling more depressed.

One reason for that is that his nurses changed.
He had gotten very used to Darla, but we had to change to a new nurse and he can't communicate with her. It looks like he is getting stressed because he is having difficulty trying to tell her what he wants.
For Hajime, communication is the most important thing, because trust is built on that. Then he is able to feel more comfortable about depending on her.

The other reason for his depression is the high school graduation.
He had to say goodbye to everyone, and it seems that he is still unable to shake off his regret that he couldn't celebrate and have fun with his friends at school.
He is feeling sad because most of his friends are going to faraway colleges.
But it is Mark who has been making up for all that.
He still has one year left of high school, so I'm hoping that Hajime will get a lot stronger this year.  When Mark graduates, Hajime will have no more friends to visit him.  Then he will have a big letdown.  I am very worried about that.

I know visiting someone like Hajime is not easy, but if someone out there can come to see him, please do!


(translated by MS)

I Hate This Disease

Today was the day for our regular evaluation that we have every three months.
It is to see if we can continue with the palliative care.  I worry a lot each time.
Palliative care is similar to hospice care, so we are not thinking long-term.  But, in Hajime's case, the doctors and Mary are doing their best to make sure his treatment does not become painful. 
Fortunately, there were no problems.  I hope that this palliative care team will continue to come.

Hajime's new stomach medication is almost too effective.  His stool has been watery, so they decided to decrease his dosage.
He was having stomach problems because he couldn't do No. 2, so he had to use suppositories and enemas which he hates. But then he had watery stools because the medication was too strong, so he was just feeling terrible.  I really felt sorry for him.
All this must have been like torture to Hajime because the only thing he can do is shed tears.
This is ALS progressing, so there really is no escape.  It truly is a frightening disease.

Two years have already passed since Hajime developed symptoms of ALS.  The progression has been very fast and now he can only move his eyes.  I feel a deep bitterness towards this disease that suddenly took away the youth of this 19-year-old young man.
Yesterday, I talked with Hajime about the past two years after he got sick.
"We used to talk a lot on the balcony, didn't we?" Now, one year later, we can no longer have a conversation.  Hajime was crying about that.  If only the progression of the disease had been a little slower, we could have done a lot more things...but, of course, there is no use in looking back.
I must look forward!  Recently I am getting more and more depressed.  I don't have any friends that I can confide my sadness to...
But  I've got to cheer up!


(translated by MS)