Apr 30, 2013

Treating My Children Fairly

Recently, Hajime has been having a hard time emotionally.
There is nothing on TV that he wants to see, and there is nothing else he can do.
He seems to dislike being read to or listening to music.
So during the day, he just lies in bed staring at the ceiling.

Caring for someone is not just taking care of his physical needs, but also handling his activities and emotional issues.  But I have the feeling that I am not doing those things.  I am so disappointed in myself...

Recently, he has been having a lot of trouble moving his eyes, and now he is unable to move them.
It seems that when he consciously tries to move his eyes to the right or to the left,  he strains his eyes and they don't move well.
So it is very difficult to communicate with Hajime.
Even if we use the message board, he needs to take a lot of breaks before he can get the message done, so it takes almost an hour.

Because we do have other children, things often get a bit difficult.  I end up putting Hajime's needs first. Then I make my youngest child feel neglected.  But I am trying to pay more attention to my other children.  Especially when my husband is at home.

I do want to treat all my children fairly...

(Translated by MS)

Apr 25, 2013


Kumiko, who had been giving Hajime haircuts before, was finally able to return to America from Japan. Yesterday, for the first time in a long time, she cut his hair.

I think Hajime felt good too.

Recently, Hajime's scalp has been quite dry, so Jamie suggested that we change his shampoo.  Jamie has been giving Hajime his bed baths.

I plan to buy some new shampoo.

It's nice that Japan has a lot of good shampoos, but here, one bottle costs ten dollars, so I'm hesitant to buy it.

(Translated by MS)

Apr 23, 2013

Stephen Hawking Lecture

Last Tuesday, Stephen Hawking gave a lecture at the university where my husband works.  This was a valuable opportunity for Hajime, so he went with my husband.  Only one guest was allowed per person with a university ID, so unfortunately I had to wait in the car in the parking lot.

Even with ALS, Stephen is continuing his research.

It was amazing how he was able to input one letter per minute on his PC.  It was also great that he could speak about the origins of the universe in front of so many people...
It made me think how great it would be if Hajime had his energy...

The lecture was an hour and a half long, so I was relieved that Hajime managed to hear the whole thing.  Something was wrong with his suction machine at the beginning and he couldn't suction, but somehow he made it through to the end.

I think it was a very valuable experience for him.
But part of Hajime didn't even want to go.

(Translated by MS)

Apr 21, 2013

Miso Soup

On Wednesday, our pilot friend came to visit again.
This time, he said he wanted to give Hajime some miso soup, so he bought him Chef Rokusaburo Michiba's miso soup.

I quickly diluted it a little bit and then gave it to him through a syringe.

After I gave Hajime the miso soup, he sat next to Hajime and ate "with him".  He always does everything he can for Hajime. Toru, thank you so much.

(Translated by MS)

Apr 18, 2013

10,000 Hits

How wonderful!  Hajime's video received its 10,000th hit.
Hajime's ALS Life

I'm glad that many people have seen it and made comments.  Thank you very much, everyone!

(Translated by MS)

Apr 13, 2013

Thank You for Coming from So Far Away

It has been hot lately.
The exterminators came and sprayed around to get rid of the termites, so I'm relieved.  I hope we don't get any more termites!

Today my friend Yoshie came a long way to visit Hajime.  She brought her children too.

They brought Ultraman and Kamen Rider DVDs and Doraemon books.  Hajime has more things to look forward to.

Thank you so much for coming from so far away.

Her children like the same games Hajime likes, so the next time they come,  I hope they will play games with Hajime's younger brother Ryo and Hajime can watch.

(Translated by MS)

Apr 10, 2013

Summer Will Be Hard

Today I updated my English blog.  I was behind.
It was a good opportunity to look back and think back on this and that.

The past few days, we have had flies in the house, and we're having a hard time getting rid of them.
And yesterday there was one on Hajime's face.  I can't always be watching his face and I feel so sorry for him (when this happens), so when I see a fly near Hajime, I am frantic to get it.  Hajime can't do anything so he can't even shoo a fly away.  I really feel sorry for him.

Hajime's room is really bad, because in the summer it is hot and there are bugs.  We don't know what to do because there is nowhere else to move him.  In the winter, it is OK.  I want our home to be the best place for Hajime to be.  I have to at least be watching for bugs.

A few weeks ago, we had a big problem with termites.  Luckily, there were none on his bed, so all we had to do was get rid of the termites on the floor.  It turns out that there are termites under the house, so that will be taken care of sometime this week.

Bugs are really terrible.  Hajime hates bugs, so I am obsessed (to keep them away).

(Translated by MS)

Apr 7, 2013

Disgust with Myself

I am disgusted with myself.

I am a very bad person.
I think I have used Hajime's illness to try and gain people's sympathy.  I think I have been using relationships with people to try to bury my grief.

I have lost many friends this way.
Friends that I had been close to started to criticize me.

I have brought this on myself.   But I feel bad for Hajime.
Even friends who had been supporting Hajime stopped visiting because they wanted to avoid me.

The difficulties of caring for someone, physical issues, emotional issues...
It is really hard to have people understand.
Even if people don't understand, I must correct myself...That's what I think.

(Translated by MS)

Apr 3, 2013

Water Is Collecting

Hajime's runny nose has been very heavy the past few days.

The doctor came last week and prescribed allergy medication, but it has not helped him at all.
I'm wondering if maybe it is not allergies.

His runny nose is sometimes clear and sometimes green.  Why is that?  I guess there are so many things that even doctors don't know.
I hope that his runny nose problem will be solved soon.

Last Saturday, they replaced his trache and the respirator circuit, but it looks like water is collecting inside the circuit (tube) when they replaced it.  That is why the title volume decreases and the alarm keeps going off.

It happened early yesterday morning and this morning.  No one knows why water tends to collect when they replace the tube.
It's attached to a heater.  If we leave it,  it should completely dry up.  The water drops are collecting in the tube because of the heater.  When there is a certain amount of water in the tube, the alarm goes off.

I wonder if people in Japan can change something like this on their own?

The fact that neither the day nurse nor the night nurse understands this problem is another issue.  They don't know why the alarm goes off.  I wish that they would put a little more focus into their work.

(Translated by MS)