Failing to help

DEMENTIA is on the rise, and watching a loved one succumb to the condition is an experience more and more of us will have to endure. Today JAMES MARSTON meets a family living with the disease.

MARY Stevens was once a cheerful, happy woman with a busy life.

Today she is a shadow of her former self.

Mary struggles to remember where she is when she wakes up. She cries when she is left alone.

She can't always remember the names of her daughter and grandson, and asks those around her the same questions time and time and time again.

All this because Mary has Alzheimer's disease. This woman who brought up a family, looked after a husband and a daughter, lived a full life and maintained an active social life is now unable to live alone or go out unaided.

Mary's daughter Jan Bowen looks after her- which includes sleeping on a mattress on the floor, in the same bedroom. She said: “It's horrible to see what has happened to Mum. We were very close before she had Alzheimer's but the condition has changed her.

“We've lost the person Mum was. She used to be happy and jolly but that's not longer the case.”

Jan misses her mother.

She said: “It's like I'm the mother now. We are still close but in a completely different way. She's only got me though, there is no one else.”

Now 76, Mary lives with Jan and Jan's son Lee in Newnham Court on the Chantry estate of Ipswich.

Jan said: “Mum needs to be in very sheltered accommodation and we have been on a waiting list for a place for two years. We've been told we are at the top of the waiting list but nothing ever happens.

“We are very cramped it is only a two bedroom flat. I sleep on a mattress on the floor in the same room as Mum.”

It was in early 2005 that Jan began to notice a change in her mother. Jan said: “Mum began to get forgetful and at first we put it down to old age.”

By April 2005 Mary's condition had worsened significantly.

Jan said: “It was awful. Mum could no longer live alone. She had to give up her house and we had to take her in. Since then she has rapidly got worse.”

In May 2005 Mary was diagnosed with Alzheimer's disease - a form of dementia and a progressive condition that affects the brain.

Jan said: “We had suspected Alzheimer's but it was horrible when she was diagnosed. It's very sad to see what has happened to her.

“She had lots of interests and enjoyed a busy social life. She was in the Co-op women's guild, went to bingo, went to coffee mornings at her church and was in a widows and widowers club.

“I try to take her out but it is difficult. Alzheimer's is very hard to live with. I don't get much sleep as she gets up so often in the night with confusion.

“She has hip problems but they won't operate because she has Alzheimer's so she is becoming increasingly immobile.

“Mum gets very confused especially when she wakes up. She doesn't know who we are or where she is. It's very sad to think she doesn't know who I am.”

Now working part time as a sales assistant, Jan had to give up her plans to get promoted to assistant manager.

She said: “I have a very understanding boss and Mum goes to a day care centre twice a week when I am at work. But she doesn't like it when I'm not around. She cries if she is left on her own.”

The constant worry and never ending presence of the disease has affected Jan who admits she gets depressed at times.

Jan, who administers all Mary's medication including Aricept, said: “I have to cope. I don't really have a choice. Mum needs proper care and I want her to be looked after by professionals but there's just not enough places.”

Lee, 24, remembers Mary as a fun loving grandmother when he was growing up. He said: “I am her only grandchild and I used to visit her everyday when I was at school. She used to spoil me as grandmothers do.

“We are all living with her illness and it's very difficult. I'm not the most patient of people and it's very frustrating. It is horrible to see what has happened to her and its tragic to see someone you care about decline in this way.

“It's also hard to see how it affects mum it makes her very upset and she gets very low because of it.”

Jan said she also finds organising respite care increasingly difficult.

She said: “We feel like we've been left to get on with it. There should be mire support. Last December the Age Concern Elderly Support Service (ACCESS) was closed due to cuts by social care services.”

Lee added: “I think its sickening it has had to shut down. ACCESS gave mum a break for a day as someone would come and take Nan out.

“It's so sad that people with this illness are treated this way. Mum's life has been curtailed because she can't get the support she needs to care for Nan.”

Daphne Savage, chief executive of Age Concern Suffolk said the charity was deeply disappointed to lose the funding for the ACCESS service.

She added: “We have known about the increasing number of people suffering from dementia for the last twenty years. To have three people in a two bedroom flat, one of whom has dementia must be intolerable. Unfortunately there is a shortage in very sheltered accommodation which would be a far more appropriate alternative for this family.

“Caring for someone with dementia is a 24 hour a day job and is very demanding. Respite care allows people to have a break and go on caring.”

The future looks bleak for Jan and Lee. Jan said: “There's nothing we can do and no way we can prepare for the next stage of mum's illness. Mum is beginning to have tantrums which we think are part of the frustration brought on by the Alzheimer's.”

It's not clear whether Mary is aware of her condition, though Jan says she knows something is not right.

Mary, who was listening in to the conversation, said: “I used to have a good brain. I love my daughter. I have always loved her.”

Are you caring for someone with dementia? Have you been affected by cuts in social care services? How do you cope? What do you think? Write to Your Letters, Evening Star, 30 Lower Brook Street, Ipswich, IP4 1AN or send us an e-mail to eveningstarletters@eveningstar.co.uk

Dementia is a term used to describe various different brain disorders that have in common a loss of brain function that is usually progressive and eventually severe. There are over 100 different types of dementia. Alzheimer's disease is among the most common.

Symptoms of dementia include loss of memory, confusion and problems with speech and understanding.

Most forms of dementia cannot be cured.

All types of dementia are progressive illnesses. This means that the structure and chemistry of the brain become increasingly damaged over time. The person's ability to remember, understand, communicate and reason will gradually decline.

The Alzheimer's Society estimates that there are currently over 700,000 people in the UK with dementia.

IF you are caring for a person with dementia, you may sometimes find their behaviour confusing, irritating or difficult to deal with, leaving you feeling stressed, irritable or helpless.

Why do some people with dementia behave like this?

People often behave in certain ways in order to communicate what they want or how they are feeling. If the person you are caring for has difficulty expressing themselves in words, their behaviour may become more extreme.

You will find it easier to deal with the challenge if you understand what the person is trying to tell you.

How can I cope with their repetitive behaviour?

People with dementia often carry out the same activity, make the same gesture or ask the same question repeatedly.

This can be because they don't remember having done it previously, but it can also be for other reasons, such as boredom. If the behaviour is becoming very repetitive, try to distract the person with an activity. If you can't contain your irritation, make an excuse to leave the room for a while.

Repetitive phrases or movements can be due to noisy or stressful surroundings, or boredom. Encourage the person to do something active, such as going for a walk. It can also be a sign of discomfort, so check that the person isn't too hot or cold, hungry, thirsty or constipated. Contact the GP if there is any possibility that they are ill or in pain, or if medication is affecting them.

Actions such as repeatedly packing and unpacking a bag, or rearranging the chairs in a room, may relate to a former activity such as travelling or entertaining friends. If so, it may serve as a basis for conversation. Alternatively, it could signify boredom or a need for more contact with people.

What about when they ask the same question over and over again?

As well as memory loss, this can be due to the person's feelings of insecurity or anxiety about their ability to cope. Try to be tactful and patient, and encourage them to find the answer for themselves - for example, if they keep asking the time suggest that they look at the clock themselves. People with dementia may become anxious about future events such as a visitor arriving, which can lead to repeated questioning. It may help if you don't mention the event until just before it takes place.

What can I say when my mum repeatedly asks to go home?

This can take place in residential care, or when the person is already at home. It can be a sign of anxiety, insecurity, fear or depression. The concept of 'home' might evoke memories of a time or place where they felt comfortable or safe, or of a home, family and friends that no longer exist. If the person doesn't recognise where they are now as home, then it isn't home for them. Try to understand and acknowledge the person's feelings and reassure them that they are safe and loved.

FOR too long the older generation has been overlooked as people suffer care homes closing, dwindling pensions, hospital wards closing, and not enough carers in the community.

Our Golden Years campaign aims to make sure that the older years really are Golden Years.

We will:

Listen to our older generation.

Fight for dignity in old age.

Make sure older people get the voice they need to raise the topics that matter to them.

Crusade on issues affecting pensioners.

Inform older people about the help and assistance available for them.

Dig out those inspirational stories that show old age need not be the barrier to a fulfilled and active life.

Champion achievement

If you have a story for Golden Years, call the evening star newsdesk on 01473 324788 or email starnews@eveningstar.co.uk