My Dad, like so many of his generation, was careful about money. He counted every penny. He was the kind of man who thought that having an overdraft was stealing from the bank. He worked hard all of his life in the hope that he would one day be able to leave my sister and me with a nest egg when he died.
But, in 2001, any hope of that was wiped out in one short, shocking sentence in a doctor’s office: ‘I’m sorry to have to tell you, but your father has Alzheimer’s.’
I clutched my husband’s hand. The words filled me with dread. But even then, I couldn’t begin to imagine the trauma we would have to endure during the next three years before my Dad’s death – not just the awful physical and mental symptoms, but the callous refusal of government to assist our family with the huge financial cost.
My Dad (Charles, pictured), like so many of his generation, was careful about money. He counted every penny. He was the kind of man who thought that having an overdraft was stealing from the bank
As the Daily Mail revealed last week, one in three people with dementia have to sell their home to pay for care that can cost as much as £100,000 a year.
Thanks to an outrageously misguided definition of what constitutes ‘health care’, the expense of carers, equipment and care homes are treated by the Government not as medical bills but as ‘social’ costs – to be met by the sufferer.
The state steps in only if the patient has less than £23,250 in savings, and that includes the value of any property.
That dementia is singled out in this way defies belief. It is nothing short of scandalous that hard-working families have shelled out £15billion in the past two years to care for loved ones. If my father had been diagnosed with cancer – as my Mum was, almost 50 years ago – the NHS would have surrounded him with care and concern, practical and emotional support. But because he had an illness that was digging into his brain, he had to be cared for at his own expense.
It is as though people with dementia are being punished by our Government for having the temerity to die that way.
At first, before I understood what dementia meant, I found Dad’s lapses of memory lovable and amusing, or at worst a bit annoying. This was 20 years ago, when society’s understanding of the disease was, like mine, far from developed.
But his behaviour soon became strange and frightening, to him and us: He couldn’t remember people’s names, he couldn’t remember where he was meant to be, he even forgot to feed his dog, or he fed his dog five times in a day.
Within a couple of days of the diagnosis, we were paying for Dad’s care. I was working in London, and my sister lives abroad, so we hired carers. Initially, they came twice a day, to cook, chat and see he was OK.
But, in 2001, a doctor said: ‘I’m sorry to have to tell you, but your father has Alzheimer’s.’ There was no prospect of getting any contribution from the state, even though Dad had faithfully paid all his taxes and contributions throughout his life. My sister and I sold his lovely tudor house in Shropshire (pictured) for £350,000 to fund his care
I tried to visit every weekend, but it was a three-hour drive and I didn’t always make it.
After 15 months, Dad needed two carers with him. He was increasingly agitated and could fly off the handle.
It was horrible: this former Army major who never left the house without checking his hair now dribbled around the house, with egg stains on his cardigan.
And the cost: Two live-in carers would set us back about £40,000 a year, and this was almost two decades ago. We couldn’t go on.
After he had an initial spell in our local hospital, we had to find a home. There was no prospect of getting any contribution from the state, even though Dad had faithfully paid all his taxes and contributions throughout his life.
My sister and I sold his lovely tudor house in Shropshire for £350,000 to fund his care.
Any home for advanced dementia is the last place in the world you’d want to be, and I am glad that my father only lived there for a few months.
Pneumonia carried him away one early November afternoon in 2004. By that point, we had spent almost £100,000 on his care.
I am still angry. Angry that no one came and asked us if we needed any help with my father, angrier still that, even after all these years and all the knowledge we now have, the Government refuses to foot the bill. We were promised dementia reform in March 2017: It has been delayed six times. It beggars belief that the NHS does not cover laundry services or meals on wheels for dementia patients.
Yet the Government wriggles out of its responsibilities by saying that they will pay for medical care, but not for social care.
Since my father’s death, I have become a patron of the Alzheimer’s Society and I have seen and read about the explosion of cases like my own.
And while no two people are the same, there are common elements to every story: The despair, the fear, the loneliness, the increasing inability to care for the sufferer… and always the implacable will of the Government not to help the victims.
I wonder what we will all have to do to make the Government understand that dementia is an illness, like any other. Its needs are clear and very tangible. Social care – the work that is done to keep people in their own homes and out of care homes – massively reduces the burden on the NHS. It is far, far cheaper to help a sufferer live at home for as long as possible. The state should be falling over itself to encourage us to do just that.
And when that becomes impossible, as inevitably it does, they should be afforded the dignity of a comfy bed in the NHS, taken care of in their last days, secure in the knowledge that their children and loved ones are not losing out because they are ill.
This is the society we all deserve. It is time the Government made it a reality.
Sign the petition at change.org/dementiacare