ALZHEIMER’S ASSOCIATION JAPAN, MEWSLETTER
BULLETIN NO､304 November 2005
Summary Translation: Hirosawa Kayoko
We were present at the Conference of Alzheimer’s Disease International
in Istanbul 2005
The International Conference took place in Istanbul Turkey 2005. ADI General Meeting was opened from a.m. 10 to p.m. 4 on 28th September. After that, from p.m.6:30 the Conference began. It continued to 1st October. It is one year since the Conference in Kyoto. A lot of the members of Japanese “Family groups (AAJ)” also present. In addition to the members, many Japanese people who are concerned to the disease joined the Conference.
At the ADI General Meeting of 28th various subjects were discussed, including the taking over of the President from Henry Brodaty to Orien Reid. We are very glad that all of the members who joined Kyoto International Conference took much of it. As the representative of AAJ､I could express our gratitude towards the members who came from various countries and ADI. Moreover, I could convey that the situations in Japan are changing little by little. The Conference of 2006 is going to be held in Berlin, Germany.
Lebanon and some other countries were recognizes as new members this year, and
Taiwan was also welcomed formally. I felt grateful that the subject of the support for Alzheimer was agreed with one assent, as the problem beyond the politics.
The most fruitful event was the exchange between the members from each country. The members who joined the Conference and the people who listened to their talk agreed with our ideas. Thanks to the people supporting behind, Kyoto Conference is still talked about as a “successful meeting.” The four members of “Family groups” from Iran were sitting next to the ones form Japan. In spite of the fact that “ there in almost no support for Alzheimer Care by the government,” Salehi Masomeh joined us. She carried the photos of her mother whom she had been caring for 8 years. The booths themselves were never so beautiful, but, looking at the people who were crying with the
Carers. I felt the following: this is just “Family groups(AAJ)” that have passed 25 years and our activity stands on the every carer. Together with a lot of the announcements, Mrs. Umemoto from Tokyo and Mrs. Shinozaki from Fukuoka spoke of the facilities, which are small-scaled but many-functioned. I would heartily like to express my thanks to those two carers.
(The participants in the Conference were Dr. Issho Matsumoto who is the Chief of the International Exchange Committee and other nine members of “Family groups(AAJ).”)
The Care Experiences from Branch Letters-44
“ I lost my health because of the care for my parents. But I won’t retire my job.”
By Mr. Y. (a carer)
Both of my parents went into the hospital in turn.
It’s 8 years since I began to care my mother. I started to live with my parents in order to care her. She had been suffering cerebrum stoppage and the left-side paralysis. After that she went to the hospital twice since she again suffered the same disease. She got a pace-maker inserted by irregular pulse; then she went to the hospital third times by diabetes. She also went to the hospital by the fracture of the backward fall. In addition to it, my father under-went three operations by groin rupture, going into the hospital by the infection of wound bleeding. He got a balloon catheter by prostate corpulence. Then he again went into the hospital by the hemorrhage of the wound. In this way, both of my parents went into and out of the hospital again and again.
My mother went into the care-house.
My mother became level 2, so she had been living at home with a helper. She came to suffer depression, lost her spirit and smile because of my father’s violent language. This spring, she was obliged to enter a care-house in order to leave him. After the three-month stay at the care-house she took back her smile. Finally I began to relieve from the sense of the guilt that decided the life left for my mother.
I separated my father for the fatigue from caring both of my parents.
My father’s forgetfulness increased day by day. He just got angry and uttered violent languages. I went into the hospital twice by trigeminal neuralgia on account of caring him. At last I became a manic-depressive. So much was I tired from his care that I took my vacation last summer and this summer.
This summer I went out of my house alone and lent a flat in a mansion where I’m living now. My husband has also taken a vacation. He is helping me now. He is taking pills for curing the stress, which has come from caring him. I’m very sorry to see him in trouble just for my parents. My energy have come to the limit, because I am obliged to take care of our home, work and child-bringing.
The only help is my daughter’s smiling face.
It is our daughter’s smile that supports our sinking home. I have been informing our care-manager of the collapse of our home and disability of our caring power. The situation, however, has never improved. It may be because it is the trouble of others from the view-point of the care-manager. In addition to it, my daughter who is now in the second year of a junior high school desiring to live with us. I have decided to get him enter a group-home in order not to involve my daughter.
It took a long time to persuade him to visit a neurologist. As a result, he was diagnosed as suffering Alzheimer. He was awake at night walking round and stayed sleeping during the daytime. There were no bounds to him love of money. His persecution complex escalated gradually. As is seen in other sufferers, he used allusive language. So I could not relaxed in any way. Frankly speaking, as I lent a flat in a mansion as I referred before, I came to feel easy.
I won’t quit my job, however hard my life is.
Everybody may think that I had better quit my job as I have lose my health because of caring my father. On my side, however, I think that I will have a grudge against my parents some day since I have been caring them. This is just the thing I won’t do ! There is no limit within the child-bringing and caring some people who is living nearby. Nobody answers to the question when this situation will end.
As like as I have been wishing the happiness of my daughter, I wish the one of my parents. I always wish the happiness of every member of my family. I feel sorry it is beyond description to have such a dream.
It is sad and hard to live on.
There are various styles of caring one’s propinquity. No one knows whether or my way of caring is right or wrong. The hardness of caring cannot be understood by the people who have no care experiences. It seems to me there is no equality in this world.
I sincerely believe that there will be some good omen, if I go on living without resignation.
The Proper Committee of Dementia of Early Onset
The Joint Committee of the Proper Committee of Dementia of Early Onset and the Proper Committee of Research was opened on the 23rd of October. It was decided that the thought of the sufferers would be taken up by the former committee. They discussed the subject that the sufferers themselves would be able to join the events in each branch from now on. They are going to introduce the members the meeting of “ Sitting in the Sun” in the Hiroshima branch.
It was also discussed what they should do in order to convey the society of the thought of the sufferers themselves. In the campaign to let the people know about Alzheimer, the important point of the activity is the network with suffers themselves in the center. Actually the activity is now on the stage of try and error. So the aim of this year is to collect as much information as possible concerning the subject. When our wish has come true, the sufferers will be able to talk with each other and the chance will bring up “the thought of the sufferers themselves.”
We are going to let the members fill out the questionnaire of the impression, which they had when they were involved with the sufferers. It will help us to make up the report and to go on our activity from now on. I’m sorry you have to answer a lot of questionnaires and the branches will be busier and busier. If you notice that the sufferers join the events, I would like you to inform us the fact.
Thank you for your cooperation.
( Ms. Yuko Okita, Staff of the secretariat in AAJ)