The wife or husband and the care.
To face with the difficulty ---the worry is monetary.

Even if it says in a family's burden and distress will be the things of strange very much in the getting sick age and sex.

When it gets sick by the 50th and the 60th, a child has already come of age, and income can secure the life which is very much in the patient's own disability pension and the children's income in, too.

But, when it gets sick by the 30th and the 40th, the amount of receipt of the disability pension is small, but they must pay the house-loan/living expenses and especialy for the educational expenses that an anti-surface child is the generation which Family take from now at most with the high school student, the school child.

A pension is more tragic when the wife is a patient though , but about 120000 - 200000 yen it is provided when a husband is a patient. A husband must work without a rest for the payment of the loan of the house and educational expenses, the medical expenses, and you must do wife's care, too. Some day will come soon when you can't live any more there if there are not the reception establishment abut your home now, and you and your wife must examine a move in the area which a reception establishment is in, or if it is looked for the place of << the job-change >> . It is high determination required as a care person.

When a husband is a patient, a housing loan is exempted by the guarantee by the group life insurance due to the progress of the symptom << the loan payment of the rest >>. The payment of the life insurance can be taken , too. But, a wife goes for the function, too, and she must get income because it is difficult still to pay children's educational expenses, traveling expenses, living expenses all only in the husband's disability pension/disability foundation pension. A wife is mother, and she is a wife, and she is father, and she must be a care person. When I was diagnosed as ALS . we thought how we shoud live from now!? It seems that my wife was worried by a feeling of despair, too.

//Days from getting sick.//
It is not the sickness that announced ends " how many years of lives" like a cancer for the care person, ALS severe side is what it feels like endless.

A 40-year-old human being opens a miracle box called "Tamatebako", and it seems that it changed completely into a 70-year-old old man who couldn't do a move suddenly.

My wife had been done the house-care to change my cloths, to pull down and up my pants or under trousers, to wash my teeth and hairs and body clean, sometimes to check for wondering if under the hot water in the bath, for several months.
Stop it, and my children said, because the out-looking was bad for the child though an electromotive style bed for the care was used and troublesome in home from the painfulness of the breathing and the decrease of the abdominal muscle . A wife laid bedding beside the electromotive style bed from the middle, and slept. It is because I can't put by myself << the bedding >> when it happens at night in the rest room.

It was faster than the imagination, and wife's care changed from home to the hospital. She moved on the way home of the work, and the leaf of the radish was boiled, and cooled, and the soup which honey was added to brought like every day.
Before and after it changed to the room and a ventilator was attached, she stayed at the simple hard bed for one week, and one week was given to me, and heard selfishness. Such days are in about 3 years more as well.

Recently, she gets tired, and she is irritated << often >>. Stop making it impossible until now and living for you, and live from now for herself and the daughters. It is disgusted at ALS, and it seems that it suffered that she hate me and felt unfortunately, and had a feeling of loneliness in the time. She always feels the worry when she grows old alone, and wants to die in a short period after illness! She says like favorite phrase "suddenly to die". If she gets same sick , she selects to live without a ventilator for the daughters. But, it was too sad for me! I don't want it to think. Therefore, live absolutely longer than me, and my hope is to hold a grandchild strongly instead me, too. Then, I want to male the daughters who I love very much , the meeting of Mac to Ke:nx and a homepage someday to show it. The ALS whole country questionnaire, too, being made silly.
Because it is the evidence that I am living. Then, I want to leave daughters much living evidence from this as well. I hope that my daughters feel and know how their father live and fight against ALS.
Now, she will reject to read it because she can not accept ALS and her father who staying the bed with a ventilator . But I hope she will some day accept it as a adult person in her mind and it is a fact having to look still , I hope.
I love Satie and Emi. in August, 1998.