Dementia destroyed my dad, as we discovered a shocking lack of support

When I was little, dad got a job building dams in Australia. To him it was an opportunity, a chance for a new life for all of us. It didn't work out that way. Mum soon became homesick and we returned to Elland living in a back-to-back. Some men would have complained bitterly. Not dad. He simply got on with his life, found a new job as a bus conductor and later secured work on construction sites.

He was the hardest working man I have ever met, which was why what happened to him was so difficult to comprehend. One minute he was the pillar of our family; the next he was on a hospital ward crying like a baby, confused, agitated and shivering with fear. He didn't know how he had ended up there and the truth was neither did we.

It had begun with dad telling stories of the Pope visiting him and regular meetings with the Queen when he was younger (apparently she's a lovely lady). I'm not very proud to admit, but at the time we found it all amusing. Many people think dementia is some kind of memory loss and a little confusion. At the start so did we, but it's a disease which creeps up on you and just when you least expect it, punches a massive hole in the fabric of your existence.

One day you're all having a laugh together and the next you're trying to analyse why somebody you've loved for so long, not only doesn't recognise you, but also wants to kill you.

As his condition worsened I still thought things would be all right. Naively I assumed assistance would be readily available to guide us through the vast support network I'm told exists out there.

It didn't happen. Instead our family began a journey of discovery, which ended in the realisation of the woeful lack of support and understanding of the shattering impact this disease has on sufferers and their families.

In those early days, mum did her best to cope and wouldn't hear talk of care homes or outside help. They had been married 61 years and she, dedicated and passionate to the end, was determined she would look after him. But dad declined quickly. His behaviour was unpredictable and during the night he often woke, convinced he was living back in Tipperary where he had grown up.

It was 2007. Mum called the Sunday morning after Christmas and tearfully admitted she couldn't cope and begged me to intervene. It's a phone call I will never forget.

None of us expected the next few months to be easy, but neither did we expect the minefield of bureaucracy, lack of communication and sometimes, sheer incompetence that we were about to enter.

Dad's doctor I can never praise enough for his knowledge and efficiency, but those two qualities were sadly absent in many of the officials we encountered. By the time he was admitted to the mental health assessment unit of the local hospital, he wasn't the easiest of patients. Some of the staff tried hard to content him, but he refused all help with washing and dressing. His socks never matched and slippers, usually odd ones, were always on the wrong feet.

We saw then that his dignity was slipping away and when one day he held my hand and begged me to tell him what he had done wrong, I struggled to offer some explanation.

The only hope was to find a nursing home where his needs could be properly looked after. We were told from the start it wouldn't be easy because of what they described as his challenging behaviour. At first I was secretly proud, it sounded somehow rebellious. Besides, I thought every dementia sufferer must be challenging and surely the care network must have adapted to cope with a disease which is effecting more and more of us each year.

It hasn't and the simple reason why is lack of funds. Dad was in decline and, while there were no timescales, the dementia would eventually kill him.

However, it is not considered a terminal illness and funding for research which might just unlock the cause and lead to potential treatments is pitiful. In the UK, for every patient with Alzheimer's disease a total of 11 is spent on research. Compare that to 289 per head spent on cancer, the 79 on stroke research or even the 28 spent on heart disease.

The same imbalance exists when it comes to their care. Keeping one of Britain's 84,000 prisoner in their cell works out at 595 a week. Placing your aged loved parent in an home costs 437 and you can forget any idea of luxury – the ensuite might just be a commode.

While we were still searching for a home, dad's situation got steadily worse. One morning I got a call to say he had fallen. He'd dived off his bed to protect himself from the soldiers he thought were trying to attack him. The nurse had found him at 8.30am. An ambulance was called at 9am. I wasn't telephoned until 1pm. Eventually just before 3pm he was taken to the main hospital to be X-rayed. He'd broken his hip.

The following morning he was diagnosed with chronic pneumonia and we were told he wasn't going to last the day. The family gathered round the hospital bed and waited. And waited. It was awful I felt we'd tried so hard as a team – me and him – to fight the truly awful disease.

But he had always been a fighter and, while he only weighed eight stone, had a broken hip and cataracts, he defied the doctors. Dad recovered and out of the blue we discovered he had been accepted into the best care home in the area. It was going to cost, but the family were prepared to pay. It turned out we didn't need to. The move came under what is known as continuing care.

It was only through a chance remark to a social worker that we discovered dad was eligible and I still wonder to this day how many other families are kept in the dark and denied such vital information.

It was the first of many battles to ensure the right benefits were being paid, not just to dad, but also to mum, two people who had worked hard all their lives and until their final days had never asked for anything in return.

We all felt a sense of relief when dad moved into the nursing home, but it didn't last. Sometimes it was the small things which irritated, like the member of staff who told me I couldn't use my own clippers to cut his hair because they hadn't been tested by their electricians, but what really hurt was how little dignity he seemed to be afforded.

Dad had a habit of wandering into other people's rooms. He'd been doing it ever since he'd arrived, but one day the home's new manager decided his behaviour could no longer be tolerated. Dad, they said, would be best back in hospital. There was no time to argue, an ambulance had already

been booked.

I arrived at the home to find his possessions had been shoved into three black bin bags and all the while knowing mum, his wife, had just been diagnosed with leukaemia.

We did find dad a new nursing home and it was a revelation. Here nothing seemed to be too much trouble, a special mat was put by his bed which would alert staff if he got up in the middle of the night.

Food was available around the clock and whenever any of us visited, it smelt like it had just been cleaned.

The home had been set up to look after people with alcohol dependency and its beds could be used by anyone over 35.

Dad was 84 and apart from the occasional pint of Guinness on holiday or a glass of wine at Christmas he had never touched a drop.

I can never thank the staff there enough for how they looked after him, but I couldn't help feeling sad that had this country invested in nursing homes for dementia sufferers he wouldn't have spent his final days surrounded by these poor unfortunates.

Mum died in February 2009 and her own battle had been just as much a rollercoaster, but the NHS seems much better designed to deal with cancer and the fall out which comes with it. Dad obviously couldn't attend the funeral.

Some people said he would sense what was happening, but I didn't believe it. The physical being was still there, but the man we all knew had already gone.

Since he died in April I sometimes stare at old photographs and think, "why him?", but I know we are not alone.

In 1998 there were some 224,000 people living in care due to dementia. Experts predict this will rise to 365,000 by 2031 and I wonder what we will do with them all?

Sometimes I think we are too tolerant and if I could only take our current crop of Cabinet Ministers to a dementia ward we might get some changes.

One eminent doctor has described dementia as a dismantling of the human being. He's right, but someone needs to be there to pick up the pieces.

Who Will Sing The Old Songs by John Walsh, published by Matador, priced 9.99 is available to order through the Yorkshire Post Bookshop on 0800 0153232 or online at www.yorkshirepostbookshop.

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