We Want to Live

Hiroko Fujimoto (ahfuji(AT)mb.infoweb.or.jp)
Sat, 25 Oct 1997 23:47:40 +0930

Hello everyone, from Japan.
I was watching the TV the other night, and there was a program
titled "We Want to Live-ALS patients and their families."
It was a documentary showing patients with ALS, and how the
families are taking care of the patients. There are very little
support for home care patients like this in Japan. There is a
big burden on the family, mentally, physically and economically.
(I also know this from experience, my daughter was on vent)

They said that there are approximately 4,000 patients diagnosed
as ALS in Japan, and 70% are dying without getting ventilated.
The man who was interviewed on the show said that he wanted
to live, but if he chose to get a trach and ventilated, his wife
will die before him because of all the work she has to do to
keep him alive. He was writing his will that when the time
comes, he did not want to get ventilated. A lot of patients
chose or have to chose to die in situations like this. The man
also commented that he feels bad for the people who are
fighting and chosing to live, that he cannot fight with them.

Do you have situations like this in your country?
What would you do if you were in a situation like this?
Maybe it's hard to imagine.

-- 
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                from: Hiroko Fujimoto
               ahfuji(AT)mb.infoweb.or.jp
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