ALZHEIMER’S ASSOCIATION JAPAN, MEWSLETTER
BULLETIN NO､298 May 2005
Summary Translation: HIROSAWA kayoko
Letters from Association members
(1)My husband became a star
Thank you very much for No.297. I was very much moved by the expression “My husband became a star. ” My wife has been suffering Alzheimer for these 3 years. Our conversation is now about our childhood. Recently I care her with pleasure.
(2)There is contradiction in the long-term care insurance.
I feel contradiction and indignation about the long-term care insurance system. It has been 5 years since the long-term care insurance system started. During the time, a lot of day homes, group homes, special nursing homes for the elderly and also private nursing homes came into being. The number of offices concerning home care is the biggest. Maybe they will profitable. I am surprised that there are too many facilities where the people who need care cannot enter. As there are many elder persons in the society, long-term care insurance system was made. The persons who don’t need so much care can make use of it and the national and the local budget are used for them. On the other hand, the persons who need much care are at home and their families have great burden. I feel indignation about this system. In order to secure resources, they are going to practice premium price increase and consumption tax ratio. Before they think of a national burden and deficit insurance system, it is better to wrestle with the measure against a decrease in the birthrate. Alzheimer is troublesome. Long-term care insurance should be for the people with severe dementia.
(3)Is the family care matter of course?
By No.296 Miss M in Tokyo who is 25 years old is caring her mother who is 56 years old, I was moved. I wondered if my daughter takes care of me. I’m now caring my mother at home. When I talk to some members, they say it is quite natural. I think so too. But in my mind I certify, “This is the matter of course, I should not complain.” Even the person who experienced think so, it is quite natural that the person who makes use of facility has a feeing of sin.
I am caring my mother-in-law who needs care level 3. As I am engaged in agriculture, I cannot care her very much. By long-term care insurance I make use of 14 days’ short-term stay a month and 4 day’s day service a week. Thanks to the system, every day passes all right. Deep in my heart, however, I feel the guiltiness of abandonment of care.
(5)Family should have love and care should be left to professionals
One year has passed since I belonged to “Family groups.”
It is a great support for me that I came to know the situations of various families and other people are also worried misunderstanding of Alzheimer. My mother is at a private nursing home. At the beginning, she had a little confusion by the change of circumstances. Now, however, she is settled and has got friends to talk with. She is now bright and cheerful. Her needing care level has got from 2 to 1. By the situation of our families, our sisters cannot care my mother at home. So we think families should have love and care should be left to professionals. I would like to watch my mother live calmly
(6)My father denies taking a bath
My father(86 years old, needing care level l3) denies the change of paper pants and taking a bath at the short stay. When I was in hospital, he never took a bath. Please tell me if there is good way.
(Advice: I imagine your father is anxious to be cared by the persons other than you. How does he take a bath at your own home? Tell the staff the scene. The family and the staff talk each other and rely on each other. I think
your father’s anxiety will be eased.
(7)To talk again and again
I am caring my mother-in-law. She cannot recognize me. Whenever I talk to her, she makes terrible faces and voices. I am very shocked. She says to my husband (her son), “That is a bad woman.” To hear that, I could not understand the meaning of these seven years. I feel sad. Usually I believe we rely on each other. But to hear her words I feel “She is not my real mother.” Reflecting my attitude against my mother-in-law, I am endeavoring not to hurt her pride. She needs care 3. Recently she cannot go ahead without my addressing. Now we make use of 6 care days a week and a short-term stay. They say, “Make use of the system at any time.” I feel relieved.
(8) Give us the information about the dementia of early onset
My sister, who lives in a mansion in Sayama City Osaka-fu, suffer the dementia of early onset. Her husband is caring her. Her needing care is level 3. When something happens, we can make use of needing care. So we took her near special nursing home for elderly. She interviewed but she denied. The home wanted the sufferer to get into it with satisfaction. Please inform us of medical facility, or the care information where we can leave the sufferer .
(9) Let’s support “Family groups
I am a nurse and a teacher of care training school. This is a very important booklet, it makes much of the sufferer’s voice together with the member’s voice, and it involves scientific content. The true care cannot be known by the person who experiences. I wish for the society where the family can care the sufferer 24 hours and it is possible to follow the change of body and mind.
My family had the period during which no members could sleep all night. For my father-in-law had terrible delusion, shouted and called. So we put nurse call. After that his situation was stable and it was quite rare the nurse call was rang.
Some morning, my husband was waken up by the nurse call.
He rushed to his room. My father-in-law said to his son. “My feet ache. Massage. The different foot, the right foot. Too powerful. Softly.” I heard it later. I could not have bear. My husband said that is why he did not wake me up. I thank my husband very much.
When Haruko was troublesome with violence and incontinence every night, it was I who took care of her. All the family including me took it quite natural. My husband is very busy at the office during the day, so he had to take a rest at home. I wanted my husband to take a good sleep at home. It was quite natural for me to care Haruko because I am a woman and a daughter-in-law. However, when I was too tired and irritated, the idol of a good wife and good daughter-in-law was broken.
By and by our sympathy lost. I did not want my husband to care with me, but I just want him the same feeling. It may have a burden even it. My father –in-law
did not have consideration. His attitude was self-defense. Hearing to his snoring
and doing the disposal of his excrement, some black lump came up to my throat.
I know no one is wrong, but I want to the throw the lump.
Nothing can be done with Haruko because she was ill , my father-in –law was too
old to move himself. My husband had a lot of work. My children helped me, but
they had to study for their entrance examination. I was too proud to complain to
them. After all I was alone. I swallowed that lump.
Remembering now, it was typical pattern of hell of care. It was long time later that I
had fit myself into the frame, and understand my situation.
I have rarely read a novel in which the hero is the sufferer of Alzheimer. It is becuse novelists lack the recognition that through the conflict they reach light. It is only recently that we began to talk about Alzheimer.
As far as I know, there are two novels: “Hakushuunotoki” by Shizuko Natsuki, and “Ashitano kioku” by Hiroshi Hagiwara.
This time let’s take up Hagiwara’s. The hero is 50 years old. He is a business manager of an advertisement agency. He has to work many customers. So memory difficulty is the direct obstacle. He noticed his accident because he could not remember the names of the customers and everyday nouns. Only this can happen to the persons of the same age.
In his case, however, the situation is a little different. For example, he forgets the change of the date of the meeting and is scolded severely by the customer. He is scolded by not only the customer but also the colleagues. Even so he cannot remember. Sometimes he could not reach the office where he has gone many times.
Headache, dizziness, fatigue appears. He feels, “this body is not my own but someone else’s. Alzheimer is a mental retardation, but I think it is also a disease of body.
After all he went to the hospital of mental illness. There he was imposed psychological test. He remembers 3 words and repeats them several minutes later. He cannot do this. He says to the doctor, “Wait a minute. Don’t say so suddenly. I have forgotten. You should have the same experience.” Together with the image diagnosis he is given the diagnosis of “the dementia of early onset.” From that time on his heard life begins.
His father was suffered the same disease. He talked to the mirror, mistook his son with his follow soldier, did incontinence, said to his wife, “Who are you?” Saeki remembers all these things, and feared to sleep. He fears he will be in quite a different place in the morning.
His wife Mieko doesn’t give him drink and meat for the prevention of the disease, and gave him vitamin c and e. Finally she found green bracelet and made him wear it. He makes violent voices to his wife. She said, “Don’t say so. Are you suffering along?”
In this way the person is going on suffering Alzheimer fight against his destiny in conflict with the situation. he more anxious the family members, the more irritated himself. It seems that the family’s anxiety conforms, “You are suffering Alzheimer.”
Soon his pocket is full of memos which he cannot recognize. Then his disease in known to all the company, and he retires. After that his disease gets worse. There are more and more wrong letters in his diary.
However, the content of the novel s is too merciless. The end of the novel is like this. His only daughter is to marry. In order to congratulate this he begins ceramic which he was learning when he was in school. He asked the near ceramic class to make a pair of biscuit which he carry to kiln in the mountain which he attended when he was a student. To his sorrow, the kiln has been broken.
There appears the past master. He is 90 years old. Saeki recently has seen illusion we cannot this is true or not. The master said, “I was said to be Alzheimer, and I got out of the facility. I will make these complete ceramic.” They drank all night and made ceramic. Saeki was glad to get down the mountain.
At the foot of the mountain, he met a woman. He said, “Good afternoon.” The woman followed him. They walked side by side. Saeki said his own name. After a while the woman said, “Mieko.” “It is a good name.” She smiled a little.
It is a good story, isn’t it. A casual love helped him.
Catch my heart-2
(1) It seems that something is wrong with my brain.
(2) At first it was heard enough to cry. With the help of my husband I took it easy.
(3) I want to die. Kill me.
(4) I am of no use. I had better die…
I went to “Sitting in the sun.
I went to “Sitting in the sun.” It was a comfortable nice place as its name.
Before 11 a.m. people began to gather. We received questionnaire from Dr. Katayama and Mr. Nakashi, we enjoyed talking with fellows. The meeting began. First the sufferer introduced his care person, and took lunch all together. Then the sufferers moved to another room.
The supporters were divided into some groups, who enjoyed games, songs, ping-pong, and talking.
In the meeting of supporters, Dr. Katayama listens to the persons whose ques tionnaire has something different on it, Mr. Murakami took part of medical problems and care problems. We talked about medical, welfare, care advices.
Suddenly there came in a sufferer and his partner, who wanted a medical advice. The experienced supporter gave the advice about consulting a doctor, jobs, everyday life. The partner looked relieved by these advices. It was important there were a doctor and experienced person.
There were levels in the sufferer, it was very difficult to encourage, talk, and gave hopes to other members. However, it is the most important those who have the same worry and trouble get together. There were warm- hearted supporters who had deep consideration. Anyway it was the place I want to come again.