Helping carers coping with Alzheimer's

"I think I am losing my memory," he said, only to be reassured by his wife, "don't we all forget names and various things from…

"I think I am losing my memory," he said, only to be reassured by his wife, "don't we all forget names and various things from time to time." Irene was totally unaware that her recently-retired husband was developing chronic Alzheimer's, never having heard of the disease.

A gentle husband, a lover of nature, a keen gardener, a man who enjoyed his golf, he had played his part in building up the prosperous society around him. Now he was getting confused in simple things like putting the key in the hall door, often locking himself in, or his wife out. Events and words were mismatched, prompting increased his frustration and tears would flow.

It was the early 1970s and people did not understand. Irene was often treated as being over-protective; her requests that her husband should not be granted a fitness to drive certificate were ignored, All of this added to her worry and anxiety.

Getting lost, insisting on walking on his own, thinking that day was night, putting day clothes on over night clothes, lighting a £1 note instead of a cigarette. It is so distressing to see a spouse you have loved, - still do and always will - out of control.

READ MORE

It is so sad when your husband thinks that you are his mother; when you have to place a name and address in his pockets in case he gets lost; when you witness an adult revert to childhood again - words cannot describe the pain.

Friends do not call around as before and the phone does not ring as often. People stay away - often because they do not know what to do or say. It's a pattern that each Alzheimer's carer can fill out with their own unique story.

I was privileged to have had a window opened for me into the plight of the Alzheimer's carers and sufferers while attending the "Reach Out - Be a Good Neighbour" campaign last October. I was approached by a woman whose husband is in the advanced stages of the disease. She asked me what the church could do to highlight the urgent need for more support and resources for carers of Alzheimer's patients.

As a result of her approach Archbishop Connell, with the approval of the Alzheimer's Society of Ireland, made "Alzheimer's - Remember the Carers" the theme for this year's World Day of the Sick in the Dublin diocese.

Archbishop Walton Empey and parishes of the Church of Ireland are joining with us in seeking to promote awareness of the struggle of the carers, many of whom are elderly themselves. Tomorrow evening at 8 p.m., Archbishops Connell and Empey will be joined by Alzheimer's patients and carers and by representatives of the Alzheimer's Society of Ireland in a special liturgy of prayers and hymns in Clonliffe College church.

In recent years we have become more aware of Alzheimer's, partly due to the high-profile names who have been affected, people such as Ronald Reagan, Rita Hayworth and Ben Hogan. But 33,000 people in Ireland suffer from Alzheimer's and the number is rising.

There is no cure for this brain disease, often called senile dementia in the past and mistakenly regarded as a natural consequence of ageing. With the greater awareness that this is not a natural process but a progressive, degenerative brain disease, sometimes affecting those as young as 30, society is challenged to do more to assist those who are coping with it.

Many of the carers and patients are the people who built the foundations of our present prosperity. We owe them now a special share of our national resources and personal time.

More Alzheimer's-specific day care centres, an increased number of long-term residential and short-term respite beds for patients, and an action plan for dementia, are all on the agenda of the Alzheimer's Society of Ireland, an organisation which provides very valuable resources and support to those caring for Alzheimer's patients.

In 1984 Irene read an article in The Irish Times by Imelda Gillespie whose husband had died from Alzheimer's disease. Imelda, a cofounder of the society, introduced Irene to an understanding doctor and to the society, then in its infancy. These contacts brought deep consolation as her husband's condition deteriorated rapidly. Irene emphasises that she could not have coped without the support of the society and its members.

Having seen her husband hospitalised and restrained still distresses Irene 12 years after his death. Her fond memory is of him looking out the hospital window, his face lit up with a smile as he pointed out to a hare pouncing around. When the hare disappeared his face saddened again - not a word could he say.

A booklet of reflections and prayers has been published for World Day of the Sick as a companion for carers of Alzheimer's, but it may be of value to a much wider group. It is available from the Lourdes Office, Red House, Clonliffe, Dublin 3.

He's gone, Oh Lord, the person I used to know has gone, and in his place is this stranger; unpredictable and inconsistent, and often very rude. It breaks my heart to compare how once he used to be with the present reality. Please help me to cope with the pain, and the loss, and the heartbreak of it all.

Bishop Eamonn Walsh is auxiliary bishop in the Dublin diocese. He is also chairman of the diocese's World Day of the Sick Committee. Prayers and hymns for World Day of the Sick can be accessed at the Dub- lin diocesan Website: www.iol.ie/(tilde)dco