Galway Advertiser 2000/2000_03_09/GA_09032000_E1_012.pdf 

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The living deat
A N N E K N E W l i t t l e a b o u t A l z h e i m e r ' s d i s e a s e in 1996 w h e n she b e g a n caring for h e r m o t h e r - i n - l a w
However, four years later, she has firsthand knowledge of how this condition - which affects 4,000 people in the west, 1,200 of whom live in Galway - can devastate and rob its vic tims of their personality and dignity. She knows too that many other men and women will find themselves in situations like hers in the future caring for a family member or relation on a 24-hour basis because the inci dence of this disease is expected to rise dramatically. Current EU figures indicate one in four people has this con dition, which mainly strikes people aged over 65 years but can affect those as young as 30 or 40. Minister for Older People Tom Moffatt recently said that from 1991 to 2026, there will be a 75 per cent increase in the number of people aged 75 years and over in this country. This will result in a substantial increase in dementia sufferers, including those with Alzheimer's disease. For every sufferer, there is a carer like Anne, usually family members who devote their days and years to looking after their mother or father or in-laws. People who may not recog nise them and whose behaviour and personality may bear no resemblance to the way it was before this disease, known as the living death, took hold. Anne's mother-in-law, Margaret, was 76 when she devel oped Alzheimer's disease. It could have been coming on for a while, Anne says, but because her family did not live nearby they were unaware of its onset, at first. "She was always a vivacious, capable woman who liked to look well, had lots of visitors, and was always doing something. "Then, we noticed changes in her. She got forgetful and began to lose her co-ordination. She would put her clothes on inside out or wear her outer clothes over her nightie. She'd spend hours wandering around the house, saying she wanted to go home and would get up three or four times a night look ing for tea or her shoes." FRIGHTENED Anne and her husband asked her to move in with them at their home in Co Galway and Anne devoted her days and nights to being a full-time carer. "She couldn't be left alone. While she recognised people, she had lost the ability to look after herself. I think in the early stages she realised she was changing. Her parents had suffered from the condition and she had looked after them. She was more aware than most about how it affected people and she was probably frightened." Anne was on her own a lot with Margaret while her hus band was at work. She was tied down 24 hours a day and could never leave her on her own, she says. Her condition worsened considerably within a year when she began to have incontinence problems. "I took it a day at a time and Died not to look too far ahead. In the beginning, I felt displaced, like as if I were up in the ceiling looking down at myself. I used to ask myself 'Am I really here doing this?'The fact that she was my mother-inlaw made it feel more strange. If it had been my mother, we would have a common bond and memories of childhood to link us." Anne hit ber lowest point, she says, the day her husband's sister said she was not going to help care for her mother. "I feh I'd hit a brick wall. This was a black time for me."

full-time.

However, she managed to cope, virtually unaided, until she heard about the Western Alzheimer's Foundation which offers a range of services to carers and sufferers locally. "The public health nurse told me about them and they provided me with a sitting service. I get 10 hours free of caring a week, I usually take it in a couple of afternoons." She describes the WAF as a godsend, which offered her a "beacon of light" during her darkest days. Now, she can get some time to herself and knows that her mother-in-law is in good hands. "If I won the Lotto tomorrow, I'd donate a good portion of it to the WAF. They understand what it's like caring for someone full-time, they are in tune with our needs. They know how isolated and frustrated we often are and how for gotten we feel." RETAIN DIGNITY She says she is lucky that Margaret is placid, sleeps well, and likes travelling (Anne takes her to Mass, to the hair dressers, and out for drives). "I believe she still feels things but can't communicate how she feels. Her speech isn't gone fully, she can say some words coherently. Her character isn't gone, it's been subsumed by other things. She's not totally a different person. She always loved children and is still delight ed to see them." Anne believes it is important to help Margaret look her best and to retain as much dignity as possible. "In some senses, she has lost control over her dignity. So, it's very important that she's well cared for physically. I take her to the hairdresser, I dress her nicely. It mattered to her how she looked in the past. I can't give her back her memory or faculties but I can control the way she looks today." Anne says she copes by living in the present as much as possible and focusing on the positive. "If you were to focus on what's bad, it would drive you demented. I don't believe in looking too far ahead or reading about the illness. It will be enough to learn about it when it happens. I'd be tearing my hair out otherwise. "It's not all minuses. I'm my own boss within the house. I'm not working 24 hours a day, I can put my feet up and read." Four years after becoming a full-timer carer, she says she has no regrets despite it being a very demanding job, at times. "I know in my heart and soul that if we didn't do this for my husband's mother, he would feel a lot worse. I believe she's better off with us than with strangers. I know with my hand on my heart that I'd do it willingly for my own parents too. But that's not to say that there aren't times when I feel down in the dumps, but I'd feel 100 or 1000 times worse if I hadn't decided to look after her." * Anne is not her real name and some details have been changed to protect her identity. * The Western Alzheimer Foundation runs a sitting serv ice for carers in Galway and operates a day centre at Tirellan Heights as well as a purpose built respite centre in Ballindine, Co Mayo which caters for patients from the west. Its local office is at Colonial Buildings, Eglinton Street, Galway. Telephone (091) 565193.