Caregiver's story
With My Husband Suffering From Alzheimer's Disease
Yuko Iwakiri, Fukuoka Branch, Alzheimer's Association Japan
'I don't have any melody, chords or resonance. My heart, beautiful throbbing mind, Please come back to me again!'
I want to tell you a little bit about the past ten years in which confusion and depression has attacked my family.
My husband was a preacher and president of a nursery school attached to a rather big church. In 1984 my husband first started to complain of headaches, he consulted several doctors in vain.
My husband loved music, played the piano and taught choirs. At the onset of his problems he wrote a grievous poem; " I don't have any melody, chords or resonance. My heart, beautiful throbbing mind, please come back to me again!"
We moved to Oita, Kyushu, the southern large island. On arrival the congregation had prepared a special collection of hymns knowing that the new preacher was musically talented. My husband had difficulty in accompanying the singers on the piano. Looking back he must have been struggling in dread, noticing that he was changing. I now deeply regret that I was irritated by my husband's behaviour instead of being considerate of him in such a situation, as I did not understand what was wrong.
I got tired of a life of keeping up appearances, no one could tell us what the problem was. Eventually at the age of 55, Dr K. Hasegawa of St. Marianne Hospital diagnosed Alzheimer's disease.
"Let's lead a quiet life after retirement" - this was the most I could say to my husband who, one time sat in a corner of the room shedding tears, and another time muttered, "How will I be from now on? I am afraid..." I recall a sad experience when a young physician asked me how his dementia was, in the presence of my husband, who at the time still had the ability to understand.
For the first few years, in the early stages of his disease my husband spent rather calm days looking after his grandchildren. Three years after the onset of the disease, a period of sitting still and quiet, came. I bought a very special chair and his life on it lasted for a year. The following four years were a period of violence and restless walking inside the house.
In May 1990, I found an article about the National Meeting of AFCDE (Association of Families Caring for the Demented Elderly) in Fukuoka, Kyushu. I became a member at that time on the very day our 33rd wedding anniversary. Although my husband was only in his late 50's he could get day service twice a week, which was organised by AFCDE. Their bulletin was a textbook for me and I was much encouraged by the articles written by family caregivers on their experiences.
Saying to myself, "Don't be angry", I tried to converse with my husband gently; however, in my sadness, no smile was ever on my face. I treasured his ability to appreciate music which remained with him the longest. He could enjoy musical television programmes, listen to CDs and even attend concerts; sadly that ended when he became unable to keep quiet in the concert halls.
I attended the caregiving study class at the public health centre with my husband. On a public health nurse's recommendation, my neighbours kindly attended at the centre to increase their knowledge of the disease. I was helped by them enormously after his wandering started.
Convulsions followed wandering. They attacked early in the morning bringing about a furious look with groans and escalated from twice to six times a year.
We joined a tour to Hokkaido, the most northern island, where my husband had been longing to visit when he was well. It was the last chance of a journey before incontinence started. There were some who blamed me for bringing such a disabled person, though the tour guide and other tourists understood us.
Another thing which annoyed me was his relatives' lack of understanding. His brother and his wife were shocked to see him after 5 blank years, as they had ignored the letters and pictures I had occasionally sent.
Finally, my doctor advised me that caring for my husband was too much of a strain on my physical condition. I made the decision to admit my husband to an accredited nursing home where he has been since March 1994. At first I took him back home every Saturday for the weekend, returning to the nursing home on Monday. No sooner had I thought this arrangement would be the best for my husband, I realised that I had to abandon the idea of us attending a church service together. I found it difficult to look after him at weekends and soon stopped having him at home but I made a point of visiting him as often as possible.
Although I feel I will never be able to accept my husband's disease, I would like to thank him for giving me the opportunity for mental development. I also thank the members of AFCDE who have been so supportive. I open my house to nearby family caregivers for small meetings which they have begun to look forward to. Free talking at these meetings, without reserve, is helpful not only in clearing away our stress but in teaching us what can not be learned even from doctors.
Partly due to ex-president Reagan's announcement of his suffering from Alzheimer's disease, people's awareness has increased and social conditions have been changing. Making the most of my experiences privately and socially - this is the least I can do to show my heartfelt gratitude to persons who have been encouraging and supporting me warmly.
