A year ago I presented a film about a deadly disease that has devastated my family and the families of millions of people in this country. (Mum, Dad, Alzheimer's and Me; January 2009).
That disease, the cruellest of killers, is Alzheimer's. It killed my mother. It's killing my father. And I cannot even bear to think if the risk has been passed on to me.
I made the Dispatches film to raise awareness of Alzheimer's but also to help bring about change. Alzheimer sufferers and their families have not been regarded as priorities by the NHS or by politicians. A year ago, I was told there were great plans to improve that. I wanted to see what happened and, as politicians gear up for the election today and start making their promises, to appeal to them publicly to include people with Alzheimer's and their families. I have already read some of the promises Labour and the Conservatives are making to help people with cancer. That is good. But please don't forget us.
Campaigning
The last year has been one of great change in my own life and the life of my father. I have forged a new and successful career. I'd already been campaigning about Alzheimer's but have now stepped up my involvement: every week I am asked to open a new centre for people with Alzheimer's or a special cafe for families or a new home. I would like to say that those wonderful facilities, often small yet so important, were built by the NHS or local councils. But more often than not they are paid for and created by local groups and campaigners.
People write to me or come up to me in the street and say how the Channel 4 film changed their lives. Some say it just made them realise they are not alone. Others say it pushed them to demand assistance from their local council or to go to their doctor to ask for drug treatment to help a mother, father, wife or husband. I have found all that so rewarding and heartening. I feel I am part of a wonderful campaign.
But those feelings are in contrast to the sadness and guilt I have felt about my father over this time. Once such a proud, organised and correct man; a real gentleman of the old school, he has deteriorated. He still lives alone and independently, which is good, but his circumstances are increasingly difficult.
My father now
Now, social services go in twice a day to help him and Age Concern goes in twice a week. He isn't taking care of himself so others have to help ensure he washes and shaves. He used to be so careful about his appearance but now he sometimes thinks pyjamas are ordinary clothes so he goes outside in them. My father was always great at fixing TVs. Now he takes the back off while the TV is plugged in and starts tinkering with it. One TV has already gone kaput. It's really worrying.
I am so far away in London while he is in Portsmouth, which is where he wants to be. I will be in the middle of working and get a call that he has got up to something new. There's no way I can get to him to help him. Of course, that makes me feel terrible .
His flat is a mess. He's always organising and re-organising it. He will put his shirts on the curtain rail. Sometimes he will hang a shirt on the light, which is terrifying. I feel so worried about him. But he really wants to carry on being on his own. I have tried to talk to him about moving in with other people but he makes clear that is not what he wants. He wants to live on his own. He never liked clubs or groups. He always liked his own company. That has not changed about him. I know he would hate sitting round in a home with other people. In the end, we had to place my mother in a home and it was a terrible decision to have to make. I want him to stay at home until the last possible moment. I know that the moment will come and that when it does I will feel I have failed. I will feel disloyal. It will be as if I have helped to sentence him to death. I feel it will hasten his death but I know it will be necessary.
A year ago I met Barry Saunders, who was struggling so hard to keep his wife, Yvonne, beside him at home. He is devoted to her. One year on, he has had to confront the painful reality that he can no longer provide the necessary care that she needs and has had to make the difficult decision to put Yvonne into a Nursing Home. But, of course, in his heart he feels the right home for her is her own home. I know just how he feels. I have been through that with my mother. I will have to do it all again with my father.
Questions confuse him
I try to ensure that I take my father's views, needs and desires into account. I don't want to patronise and treat him as someone who does not have the right to say what he wants. But it is difficult to know what that is. Now, questions confuse him. He doesn't know how to answer a question so I have to suggest something specific to him and see how he reacts. It is especially hard to talk to him on the phone. When I do, I often feel afterwards that I spoke to him like a child. Even when I am with him, he will talk away, apparently happily, about inconsequential subjects like the weather and it is hard to try to find out how he is really feeling and what has been happening to him.
There is a lovely side to the way he is now. He was a terrific father but he was also a disciplinarian. We knew he loved us but, like so many men of his generation, he didn't show it. He was decent and honourable but he couldn't show emotion. Now he shows us great affection. He reveals the part of him which he used to hide. He calls me darling all the time. I love it. At times I think he believes I am my mother which is so affecting for me. But my dad, the proper man who always behaved correctly, has become this lovely little old man. He is a little at times but he behaves then as if the rest of us are mad and he is the sane one. At times I cannot help smiling. And it is sort of true that the world is mad. If it was a sensible world, we wouldn't neglect people with Alzheimer's.
I have to help
At times, the tragedy of my family is overwhelming. But then I get one of those calls to do something to help the campaigning. I can't save my father from his fate but I can go out and help to raise awareness to help other people. My life has changed profoundly because I made the original film. Now I feel I am responsible. I have to help. I feel so strongly about the lack of basic assistance for families. Last year, Dispatches asked You Gov to survey over 750 carers (767 to be exact) which found 80 per cent were dependent on families for help and 41 per cent rarely or never receive respite care and fewer than half received support / care from social services. The Alzheimer's Society has just carried out a new survey of their members. Depressingly things seem to have got worse over the past year.
Only 12 per cent said they always receive respite care.
A quarter of people said they received the help they needed and only a quarter said staff providing care had the skills and understanding required to work properly with people suffering with dementia.
Thirty years ago Alzheimer's was a death sentence - and it is still a death sentence today
I am also so angry that while in recent years cancer treatment has progressed so much because massive effort has gone into cancer research, the advances in Alzheimer's research have been so slow. Cancers that were a death sentence 30 years ago can have a recovery rate now of 60, 70 or 80 per cent. Some are regarded as completely curable if caught in time. Thirty years ago Alzheimer's was a death sentence - and it is a death sentence today. That is a matter of the resources put into cancer and denied to Alzheimer's.
One scandal is that so many councils say that Alzheimer sufferers need 'social care' not medical care so they don't get free NHS resources. This is ridiculous. Alzheimer's is a medical condition with terminal disease. Increasingly lawyers are offering to take legal cases to challenge decisions not to give someone free care. Think of the waste of resources when a public body has to hire lawyers to defend the action. Wouldn't it be better to spend the money on the person in the first place?
One of my bugbears is the fact that the first point of contact is so often the GP -and so often that is when things begin to go wrong. When she really began to notice her cognitive difficulties my own mother went to her GP for a year before we knew about it. She was crying, frightened and distressed and I never knew. I will never get over the guilt I feel about that.
Use your vote
The Alzheimer's Society has polled 150 MPs to ask them what they think. Eighty-one per cent of those surveyed said they believe a long-term settlement for the funding of social care needs to be a high priority for their party. Sixty-seven per cent also agreed the system for charging for essential care such as washing and dressing places an unfair burden on people with dementia.
There are millions of people in this country who have parents, partners, friends and former colleagues who have Alzheimer's. We are also voters. Let's use the power we have now to say to politicians of all parties that if you want our votes, if you really care about the sick and elderly, show it with concrete policies and specific promises to help people with Alzheimer's and their families.
That help will come too late for my mother. It will probably come too late for my father. I live with that sorrow. But if my campaigning could help someone else's mother and father, I will feel just a little less of that awful guilt which eats at the child of every person who has Alzheimer's.
More facts
Up to a quarter of hospital beds at any one time are occupied by dementia patients.
The numbers of people with dementia will double and the costs will triple within a generation.
The government have allocated £150 million to support the new Dementia strategy but we understand that this money is not ring fenced.
Dementia is the biggest health and social care challenge of our time.
Unpaid carers of people with dementia save the economy £6 billion a year.
By 2018 dementia will cost the UK £27 billion per annum.
Unpaid carers supporting someone with dementia save the economy £6 billion a year.
Dementia is one of the main causes of disability later in life, ahead of cancer, cardiovascular disease and stroke. As a country we spend much less on dementia than on these other conditions.
42% of the population (27 million people) has a close friend or relative who has dementia.
There are 700,000 people with dementia in the UK. By 2018 there will be over 800,000 people living with dementia. This will soar to over one million by 2015 and 1.7 million by 2050.
One in three people over 65 will die with dementia.
Fiona Phillips; January 2010
