Mentally disturbed Aiko-sama of the Yano family – – Anguish of the family taking care of the beloved soul hovering between two worlds. A bunch of camellias Early one morning in the winter of 2003, there was a cry for help from my daughter, who was upstairs. “Mother! Help me, Mother! ” I rushed upstairs with an uneasy premonition, my heart pounding. What I found there was a lavatory bowl full of used tissues.
The culprit was standing by the bowl, looking puzzled, as if to wonder who had done such a naughty deed. She said, ” Someone came here, and put a bunch of camellias into this bowl,” while peering worriedly into it. I do wonder who has done this! ” I could not blame her. I went downstairs to fetch disposable gloves and a bag, with my eyes dimmed with tears. A couple of days before, I had had an interview with a judge from the city care agency to evaluate the level of the home care services my Mother needed. I took a photograph of this situation so that it could be used to help determine such a level later.
Almost in the same hour the next morning, I had to rush upstairs for the same reason. By the end of the day we had placed a sign indicating, “This toilet is out of order! , on the door of the toilet. Instead, a bedside toilet was installed with a restricted amount of paper. Because of her failing memory, Mother wipes herself as long as there are tissues, forgetting that she has already done so. Several days ago she broke the disposable toilet bag into small pieces and scattered them all over the floor. As the bag was made of polymer composition, her clothes, the floor, bedding, and everything else in her room became crunchy and sticky. I called my sister, who lives in the immediate neighbourhood, for help.
She soon came to my assistance, but it took hours to clean the room, and to clean Mother"s body. This kind of event never happens in daytime when helpers are at home. This might be another proof that famous “Murphy"s Law” is correct. The development of Mother"s symptoms of mental disturbance went from bad to worse. I used to ask a helper to come and take care of her while she was having her meals.
One evening, a helper came to me, saying, “Aiko-sama is calling you. ” When I went upstairs to see her, she asked me, “Are you the person who is always looking after me? The helper and I looked at each other involuntarily, not knowing what she was trying to say and I couldn"t understand. Mother also complained that I didn"t give her a sleeping pill last night. She said she could not sleep well at night. This is not true; in fact, I never forget to give her a sleeping pill and to massage her shoulders and back, saying “good night,” before turning down the light in her room. Around that time, Mother"s behaviour began to ruin the health of the family, especially that of my daughter.
As I had already been suffering from arrhythmia and had been taking medicine to be able to get to another world after having looked after Mother, I had been taking sleeping pills to help me to sleep deeply for a short period. While I was asleep, my daughter used to take care of Mother upstairs, and wake me up when necessary. However, Mother started suffering from sleeplessness, moving around in the room during the night. My daughter finally became immuno-suppressed and suffering from various complaints. I consulted Mother"s doctor about her condition and asked for a stronger pill to make my mother sleep at night.
He said that he could prescribe stronger pills, but that we should not expect them to work, because, mentally disturbed people often didn"t respond to those drugs. My sister had already concealed a calling bell under the carpet, and I periodically went upstairs to see what Mother was doing. There were no other options open to us. Mother did not respond to the new pills as expected. She had undergone surgery for breast cancer five year ago, and shortly afterward, she had been affected by an even greater shock when our eldest brother died from stomach cancer, after his surgery had been rejected.
Since that time, Mother had been suffering from a very severe trigeminal neuralgia. Soon, she had to have a trigeminal rhizotomy. Meanwhile, she had suffered many other problems, including severe haemorrhoids, diverticulitis and herpes infections. This made her unable to eat ordinary food, and she began to live on fluid meals. One Saturday afternoon, quite unexpectedly, she was suffering from an acute abdomen so I took her to a local hospital. She was diagnosed as having peritonitis and immediately taken into hospital. There was no shared ward available at that time, so she was accommodated in the best single room of the hospital.
However, I soon noticed that her nurse had long red manicured nails, and moreover a shower facility in the room worked only a couple of days a week. Mother"s condition improved very rapidly, but, for a long period, there was almost no information about Mother"s medical condition from the doctor in charge. The doctor insisted that Mother"s abdomen was still full of pus. The hospital was fortunately very near to Funabashi Station on the Keisei Line, so my brother often made a stop there on his way home from his office. My sisters-in-law also helped me a lot, taking turns with each other to visit Mother.
The doctor explained that the drug he had prescribed had performed a miracle and Mother would recover without any complications. However, we felt we had wasted too much money doing this. When Mother had acute recurrent symptoms several months later, I had no hesitation in taking her to another hospital to ask for help. Around this time, Mother began to show a strange behaviour pattern. She cut the tube of fluid delivery system with scissors, and become disorientated. She was consequently restricted in her movements, was bound with a belt to the bed during the night or to the wheel chair in the daytime.
Her stamina was astonishing, and she was released from the hospital a month later. However, she had begun to show a sign that her departure was nearing with saliva dribbling from her mouth all the time. Cutting a large piece of absorbent gauze into small pieces became her only pastime, and it looked as if she was doing this in a threatening way. An agonising decision All the family buckled down to take care of Mother, with the round-the-clock assistance of many helpers. However, the number of disturbing calls to my brother or sister to complain about the current situation increased day by day, and this could have bothered them a lot.
But they soon sympathized with me, and agreed to put Mother into a nursing facility. We started to find an appropriate facility for Mother with the help of a care manager, responsible for making such arrangements. As Mother has a specific digestive ailment, we had to find a hospital-type care centre. Both my friends and helpers gave me information concerning such facilities, but, some were too far away, and others too expensive. My sister made a call by chance to a nearby hospital and asked whether they could accept our mother.
They replied that we would have to arrange an interview with the hospital staff first, adding that it would cost about ¥800,000 a month, including one-tenth of which must be paid by Mother as a recipient of services. At this point my brother stated that he must take the situation seriously now. He said that we should wait one more month, after which he would find a suitable place by one means or another. I told him that there was no time to lose and that this was a real cry for help from us. So, under the circumstances, there was no other way but to apply for an interview with the care facility.
As a result, I met the staff of the hospital together with my husband and my sister. They informed us that they could offer a better price, in view of our situation, stating furthermore that the present state of affairs was very understandable and that, to prevent the condition of the family from getting worse, they would consider whether they could accept Mother soon. The room charge might furthermore be reduced by 50%. We considered this to be a most acceptable price, and completed the application form at once although we did not understand the whole system was all about.
While waiting for their reply, we felt as if we were waiting for the result of a school entrance examination. Several days later, I got a call confirming Mother would be accommodated at the facility. The date of entry into hospital was fixed at December 12th, 2003. On the day before entry, Mother"s grandson, Toramitsu, visited us, and spent a whole day with my mother. By that time, my sister and I had prepared all the things necessary for entry into hospital, labelling Mother"s name on every article, filling in the forms of various documents.
We were ready but nobody had any energy to cook dinner for my nephew who came to spend the whole day for my mother. We ordered a delivery service of sushi for dinner. This should have been to celebrate my mother"s new life. However, I felt something unusual. I felt heavy, and a bit feverish. When I noticed swollen lymph nodes on my neck, my blood froze. Hospitalisation On the morning of my mother"s hospitalisation, I could not get up. My daughter took the day off from work, and took me to a local hospital. A subsequent blood test revealed that I had a second mumps in my life.
My husband drove Mother to the facility with my sister and her husband. Mother was accommodated in Room 410 on the 4th floor of the hospital, a room next to the nurse station. I couldn"t visit her for more than two weeks, during which, my sister went to see her almost every day, telling me in detail about Mother"s condition on every occasion. Mother refused to eat meals complaining about a pain in the mouth, crying because she was feeling homesick, and finally they put her on intravenous infusion. I was in two minds about what I should do, but there was nothing else I could do but to get completely recovered.
My husband did a vast amount of the housework for me while I was in bed, and thanks to his devoted care, I got well in two weeks, and could visit Mother with him. Mother called me “Hamako,” my sister"s name. She didn"t like her room, and packed her belongings into her bag and made packages of many things around her bed. She asked me to send them home by express. I left the hospital with painful reluctance with my husband. Miraculous New Year Party 2004 The end of each year is usually the busiest time for Japanese housewives.
However, this year-end, I was extremely reluctant to prepare for the New Year but fortunately, my sister and her husband had been in the U. S. for more than 30 years, and have American nationality. Consequently it is not their custom to celebrate the New Year as we do, and they didn"t notice my reluctance to hold a New Year"s party for the family. At this time, an emergency had arisen in my brother"s family. The condition of my sister-in-law"s mother suddenly changed, and she was taken into hospital all of a sudden.
She had been suffering from duodenal cancer. Sao, my sister-in-law is an only child, and there is nobody else to take care of her mother. I have two sisters-in-law, and since my own sister had been in New York for such a long time, these two sisters have helped me a lot when my mother was ill. I am afraid I depended on them too much. When I heard Sao"s mother was diagnosed as having a cancer, I was really ashamed at not being able to help her at all. It has usually been the custom each year to celebrate the New Year at my home for the Yano and Tanabe families.
My husband used to cook for the party. However, no one agreed to get together this year. On the second of January, I happened to get a call from my brother. The family of my brother had just been visiting Mother"s hospital, and he said they were now at a short distance from my home on their way back home. My brother asked me over the phone, “Do you have anything nice to eat for the New Year? ” What was he trying to say? I couldn"t believe my ears. He explained that he could not celebrate the New Year, because his wife was also too tired and to prepare anything.
He said that ready-made dishes available in the market tasted terrible. Poor brother! I asked my husband whether he could cook something nice for them. He soon checked the content of the refrigerator. “Leave it to me! ” he said. What a reliable husband I have! I then made a call to my sister and told her the family of my brother Yoshihiro was coming. My sister came to help us immediately but when she came, she was worried because there was no food in the kitchen. But shortly after that, the kitchen was full of fantastic dishes.
My sister was agreeably surprised and said, “Koki is just like a magician! ” I truly agreed with her. Let"s hold this miracle party for the honour of the mothers of both our families. Between this life and eternity It seems that my mother Aiko-sama knows her name “Aiko-sama or Yano-sama”, which means Ms Aiko or Ms Yano. However, she cannot distinguish my sister Hamako and Kazuko, which is my name. “Here I am, Mother. I am Kazuko. ” She often looks me in the face. She seldom recognises me, however, before she smiles, I always give her a tender hug and she often hugs back.
She has an extraordinary smell since she no longer uses the toilet. Before I take her for a walk around the garden in the hospital, I ask her whether she would like to wash her hands. In the toilet, she asks me many times,” Is it allowed to urinate in here? Are you sure? ” One day, when I visited the hospital, Mother was on intravenous infusion and she was jolting the safety bars of her bed. “What"s the matter, Mother? ” She answered that jolting the bars makes the infusion drip faster. As the infusion bag was almost empty, I called a nurse, and she came to change the bag. Yano-sama, here is one more infusion. ”
She encouraged Mother. However, Mother refused to accept it and strongly resisted the nurse. My heart was in my mouth. I called my sister but she was not at home. I called my brother"s mobile, and asked for his agreement to ask the nurse not to give Mother intravenous infusion any more. His view was that if the doctor agreed, we had no alternative but to ask this to be done. I soon returned to Mother"s room, and asked the nurse to discontinue the IV infusion if she refused or resisted it.
After a relatively long silence, the nurse replied that she understood and that she would discuss the matter with the doctor. Since then, Mother did not eat for a few days, although the nurse just tried hard to let her drink liquid. Meanwhile however, Mother"s appetite often returned and she began to take liquid meals by herself again. She alternated between little appetite and abnormal appetite and the pattern soon established itself. During the period of abnormal appetite, she suddenly refused to use her room, and began to prowl along the corridor of the hospital.
She had a rest only for 5 to 6 minutes a day and roamed around day and night, such that her legs become elephant like and some parts soon became necrotic. My sister and I visited her in turns, and gave her aroma massage which fortunately, was so effective that her legs soon returned to normal. Several days later, I visited Mother to find that her bed was no longer in the room. Mother was sleeping in a bed that had been installed by the window of the corridor. The nurse explained that since Mother had refused to enter her room, they had moved her bed to that place.
However, I was relieved to know that Mother had begun sleeping in the bed. I would have liked the room charge to be less expensive in view of this situation, and exchanged glances with my husband in a somewhat humourless smile. Shortly after that time, Aiko-sama awoke from her sleep, and clung on to me desperately. “Let"s go, let"s go downstairs”, she kept saying. She likes going by lift. A special PIN number is required to operate the lift but Aiko-sama had been playing naughty tricks, by mingling with a crowd of hospital visitors when the lift door opened.
They had discovered her in various places in the hospital. The nurse said that it was fortunate she had not gone outside the hospital. She was sometimes naughty on the 4th floor. There is a sign, which says, “press here” on the button of the fire alarm box and she probably often pushed the button to sound a siren. Hospital should be aware that those who belong to the category of Aiko-sama like to follow written instructions. I would like to suggest that the sign on the button should say “do not press” especially for the patients on the 4th floor.
One day, a doctor responsible for Mother told us that we should not waver between hope one minute and despair the next as regards the condition of Mother. We should understand that she is not living in this world any more. He warned us that otherwise, we would run the risk of contracting a stomach ulcer. His phrase burned into my brain. About that time, it was necessary to decide the level of care needed by Mother. The previous night, the judge had called me because she wanted to confirm something in advance. I answered various questions she asked me, and told her I would be waiting for her at the hospital the next day.
On the day of evaluation, I was waiting for the judge with my husband in Mother"s room. She came in. “Good afternoon. Are you Aikosama"s husband? ” She asked to my husband. If this were true, my husband Koki should be over 100 years old by then. I was furious with the judge. “This is MY husband! ” For the family of the mentally disturbed patient, a lower level judgement is beneficial, because one-tenth of the insurance burden would be less. However, this is clearly not profitable for hospitals. This system is very difficult to understand for us because it is much too complicated.
Anyway, I told the judge that Mother had developed delusions the other day, and explained to her that she had said that two children were playing on her palm, and the doctor had operated on her hand. Mother also said that the operation was unsuccessful, and she has problems in her hands. The judge said that Mother"s condition was not so terrible. Within the day, I made a call to the Town Hall, complaining that the nursing-care manager was not aptitude for her work. Evaluation of Mother"s level remained the same as before at level 5. Cherry-blossom season The season for cherry-blossom viewing had come.
I don"t know who told Mother that she would be taken to see the cherry-blossoms, but her usual request “Let"s go downstairs” changed to “Let"s go out to see the cherry-blossoms. ” This could maybe have been her last chance to see them. For this reason I wanted to take her out, so one Saturday afternoon, I drove to the hospital with my husband, daughter, and my dog Kona. I asked the nurse whether I could take Mother out to see the cherry-blossoms for a while by car. She said that she would get permission from her doctor. We waited for this in Mother"s room.
Half an hour passed, then the nurse came in seemingly irritated and said that she had been unable to contact the doctor, but that she would assume full responsibility. We took Mother out of the hospital and drove to a near-by driveway full of cherry trees. Kona remembered Mother and licked her hands. Mother also remembered Kona, and fondled the dog in the car. Whenever asked where Mother is, Kona would always go upstairs to look in the bathroom to find Mother. When Mother was at home, she used to spend most of the day there, so we cannot blame Kona for going to the bathroom to find her.
Mother viewed the cherry-blossoms from the car window and whispered to herself many times, “Beautiful! Beautiful! ” The weather was fine and we could not ask for anything more, but the windscreen seemed like a frosted glass to me. When we returned to the hospital, Mother couldn"t remember anything, and said, “Let"s go out to see the cherry-blossoms. ” During the week, my sister took her out to see the flowers, and my brother drove her to the near-by park to see the cherry trees. Mother must have spent a pleasant week with the family seeing beautiful flowers.
A few weeks later, I asked Mother what month it was then. She said she didn"t know. It would soon be May. As soon as I told her that, she said, “Well, it"s the season for cherry-blossoms. Let"s go out and see them. ” Until then I had heard that taking care of mentally disturbed persons is a terrible and hard job to do. However, as Mother was able to celebrate the special occasion of her eighty-eighth birthday without any problems, I have never imagined that she suffers from such an acute dementia like this.
Memory disturbance is really a strange symptom. In Mother"s brain, there is space for the past memories of many years ago, which come and go, but there is no space for immediate memories. She lives only at this very moment. The dot memory will never be connected to the past lines. In some sense, the family has been be saved by her symptoms, but despite this we feel very sorry about it. It was only a couple of times when Mother waved her hands saying “Good bye” to us when we left the hospital.
At present, it is very hard to find any opportunity of leaving the hospital. Mother forgets that she went out for a walk, got on a bus to the near-by station, and asks again to do the same thing. My brother has been as patient as a saint. He takes Mother downstairs so many times until Mother gets tired and has a lie-down in the bed. “Can you recognise me, Mother? ” “Hamako? ” “No, I am not Hamako. ” She seldom remembers the name of Kazuko, however, when she called my name by a miracle, I cannot help bursting into tears, and hugging her.
In our house, there is a bathroom upstairs and Mother"s room is opposite. Every night, when I take a bath, having finished all the household jobs, I feel an indescribable sadness, finding the light of the room off all the time. I wish I could bring Mother home once more. However, I always feel myself on the horns of a dilemma. If she felt homesick, it would be a terrible pity for her. As if she had been expecting the situation that has meanwhile arisen, she called me to her bedside when she was at home.
It was shortly before she became severely mentally disturbed. “Kazuko, remember here are my clothes to wear when I cross the Acheron, the river of the underworld and a special coin to pay for the ferry boat. Please never forget they are here. ” She told me many times about this emphatically. Having been asked to look after her affairs when she is gone, it is more than I can bear to see her becoming thinner and thinner day by day. I have to prepare for that day when she flies away for eternity and comes home. May such a day be as faraway as possible.
