Ribbons to raise profile of illness

The yellow ribbon is the symbol of the Alzheimer's Disease Society and on Friday, to mark the end of the week, an aeroplane will fly over York Racecourse and the city centre pulling a yellow ribbon and a banner behind it.

Today buses run by First Bus, including the Park and Ride service buses, were all decorated with giant yellow ribbons to help raise awareness of the disease.

Alzheimer's is a condition which leads to the gradual decline of a person's mind and the York branch of the society wants to make carers more aware of the help available to them.

Chairman of the York branch of the Alzheimer's Society, Ken Metcalfe, said: "Quite often carers will hang on to the very end until they become unwell themselves before asking for help.

"We're trying to get people to come forward and ask for help before it gets to that point."

Mr Metcalfe said he had got involved with the group after his mother died. Both she and his grandmother died of the disease.

He said there were three main services run in York to help people with Alzheimer's and their carers.

The Befriending Service gives the carer a friend who has been specially trained to understand the frustrations and needs of the carer.

The Carers' Group meets once a month to arrange activities and outings for carers so they can meet together.

The branch also provides a sitting service in conjunction with Age Concern York.

This enables the carer to take time off from the 24-hour physical and emotional pressure of caring, as a qualified sitter stays with the person with dementia in their own home.

On Friday the volunteers from York branch will be collecting in the city centre, Acomb and Haxby and all the money raised will remain in York.

If you would like to volunteer to help, call the York office on 430020.

HELPING COPE WITH ALZHEIMER'S

This week is Alzheimer's Awareness Week, aimed at drawing attention to the help available for patients with the disease and their carers. Here Helen Steele, from the York Branch of the Alzheimer's Disease Society, describes her experiences of caring for her late father.

Over the past few years, like so many others, I have discovered what it is to be a secondary carer. My father had Multi Infarct a form of dementia caused by multiples of small strokes.

For over three years my mother lovingly cared for him at home. It became a full 24-hour job. As his illness progressed it soon became all too much. At this point all three of us were being supported by the NHS community care team.

As the months went by my father was clearly confused and frightened by the experience and he manifested the outwards signs of frustration and anger. I have to say that this was totally out of character for him. He had previously had a wry sense of humour and gentle manner. He was a manual worker for most of his life and in his 70s was still physically strong. It was a standing joke within the family that once he had turned the water tap off, the services of a master plumber were required to restore the supply, his hands were so strong. The combination of the physical strength and the dementia-related illness proved to be a dangerous one.

Unfortunately we were unable to continue to care for him at home. This was an extremely difficult time for all of us. So many emotions and so many decisions to be made, and always the overwhelming feeling of guilt. Having passed on responsibility to a residential home on the advice of the Local Health Authority, we were completely reliant on their expertise and professionalism.

Unfortunately over a 12 month period my father, who did not like change, was moved ten times from residential home to hospital to nursing home and round the system again. During this time his condition deteriorated dramatically and his sedative intake was increased. This combined with a lack of stimuli left my father in a situation where he did not communicate at all. Now extremely concerned over his rapid decline, we sought outside advice.

I contacted the York Alzheimer's Disease Society. Being able to speak to someone who clearly understood the problem was a great relief. They knew what questions I should be asking and who to ask. I was now in a position to negotiate at my father's assessments and as a result acquired a placement in the elderly care unit at the Retreat in York. The staff had a clear understanding of my father's condition and were able to reduce his sedative drug intake to one tenth of his previous dosage. He seemed less anxious and at peace with himself. They were keen to investigate his life and gain an insight into his personality before the dementia and were able to use his history as a stimulus. This not only helped my father's well-being but also reassured by mother and myself that the staff truly cared.

In my opinion inappropriate care for all dementia is commonplace. In contrast to other terminal diseases where we would expect our loved ones to be treated in an NHS hospital we are expected to accept piecemeal care, often at the expense of the patient or their relations. Sadly it is the relations, often elderly, who suffer twice - not only do they lose their loved ones but also their financial security which has perhaps taken a life time to save.

No one wins and we mainly create a vicious circle.

As a result of my experience I have become a member of the Befriending Scheme, run by the York Branch of the Alzheimer's Disease Society, which provided help and support for carers. I hope to be able to give reassurance and act positively for the carers I befriend.

The York branch of the Alzheimer's Disease Society can be contacted on 01904 415065.

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