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.
HEAD