Father of tragic Suzy Lamplugh reveals lesson in living with dementia

Paul Lamplugh will never forget the words his eldest daughter uttered just a few weeks before she disappeared.

Suzy was a typical 20-something. While working hard as an estate agent, she also had a wide circle of friends and a diary which was rarely empty. When her mother, Diana, dared to suggest that she might be overdoing things, she responded in characteristic fashion.

“I’ll always remember her turning round and saying, ‘Come on Mum, life is for living’.”

That had always been Suzy’s philosophy and it was one the couple fought to remember when in 1986 she vanished off the face of the earth after arranging to show a prospective buyer around a house in Fulham. They were words which Paul also hung onto when Diana suffered a devastating stroke.

It was March 2003 and the couple were at a fund-raising seminar where Diana had been due to give a 10-minute presentation on the work of the Suzy Lamplugh Trust, the charity she set up six months after her beloved daughter disappeared to campaign for better personal safety. It was the kind of thing she had done a thousand times before, but this time Diana seemed agitated. Noticing his wife was unwell, Paul went to get help. By the time he returned she was slumped unconscious in her chair.

No one pretended the situation was anything but grave, but even following two operations to stem bleeding on the brain, Paul was convinced his wife would fight back. She was after all the woman who despite the heartache of never knowing what happened to her beloved Suzy had been so doggedly determined to ensure a positive legacy for her daughter.

“Physically she recovered well and I was sure it was only a matter of time before Diana was mentally on the mend,” says Paul. “I suppose I didn’t want to think about the alternative.”

However, Diana didn’t improve and it was a family friend, Dr Desmond Kelly, who broke the devastating news. During the operation, surgeons had discovered the early stages of Alzheimer’s. “That was it, her memory was never going to come back. The Diana I knew had gone.”

As Paul looked back on the months leading up to the stroke, he realised that his wife had already shown symptoms of the disease. There were the moments of forgetfulness, the times she became fixated on nothing much at all and the odd occasion where she had become particularly aggressive. At the time he had put it down to the painkillers Diana had been prescribed following an operation on her shoulder, but now he believes it was sign his wife was already slipping away.

“Because of the stroke, Diana’s dementia did not happen gradually and while I know it sounds strange I am grateful for that. Had she known that at some point in her future, her life would not be as it had been, it would have been unbearably frustrating for her. Overnight she came to live only in the present. From that point for Diana there was no past and no future.”

While Paul wanted to look after Diana at home, he eventually heeded the advice of his doctor friend to keep Diana in the NHS system and she left hospital straight for residential care. Paul visited every day and it was in those first few weeks that the words of Suzy came back to him.

“Seeing Diana in the home where the patients were incapable of doing anything I knew I had to find a way to create a new life for both of us.”

Life even with dementia, he decided was for living and he didn’t want Diana spending her final days staring at a meaningless television screen. Paul also admits there was an element of self-preservation in his decision.

“We couldn’t have a conversation, she didn’t know who I was and I knew that if didn’t think of something to do it would also have driven me a little barmy. We both needed stimulation and it made me acutely aware that the time we had together was precious.”

Every day, Paul would pick up his wife and they would drive to a nearby park for a short walk and stop, if they could, at a cafe where Diana would always have ice cream. By then, Paul was under no illusion that anything could bring his wife back, but together they did create some happy memories to add to the family album.

“Diana’s memory was like a burnt out building, all gone inside except for a few dangling wires. Sometimes, maybe a breeze would blow, the wires would briefly touch and Diana would speak a few words of sense. The first time it happened was when we had been out for quite a long walk in Kew Gardens. As we were leaving she read out loud in a her normal voice the words of a large poster on the wall of the building.

“Those moments were lovely, but the bigger part of the journey was learning to accept Diana as she was.”

It’s why he has now written a short book on his experiences with proceeds going to the Alzheimer’s Society. Paul is not suggesting that life with dementia can ever be easy and he acknowledges that there are many different types of the disease, but he hopes his book may encourage relatives to provide as much active stimulation as they can.

“Diana was always a doer. As well as being the driver behind the Trust she also set up Get Connected, a helpline for vulnerable young people and for a long time taught swimming to the elderly. When the joints get older and movement is restricted being in the water feels like freedom. Diana gave so many people a new lease of life and it got me thinking about what could I do for her.

“It was mostly trial and error but from the very first day she went into the home I used to take her out in the car. I know a lot of people say that those who suffer with dementia become very anxious when they are taken out of their residential environment, but Diana was never like that. I think it may have helped that it was something we did so regularly that it just became part of her routine.

“The world shrinks when you have dementia and I just wanted to make sure Diana’s life was as full as it possibly could be.”

Very soon the Marble Hill Park cafe in Richmond became a second home and the people who worked there and the other regulars soon became friends.

“I was very lucky to have found the cafe, it was central in a way to our lives. There were times when life was difficult, but I tried to grasp hold of the occasional positive events and many of them happened at that cafe.

“It was where we met up with friends and relatives and while Diana was not been able to have any meaningful conversation she did make new friends, people who hadn’t known her before, but who came to love her as she was.”

The one thing the dementia never took from Diana was her smile and as they sat in the cafe, Paul did get the odd glimpse of his wife of old.

“One day the manageress Emma came out to talk to us. She had been unwell and cautiously said she was alright, but still not quite right. Diana had never been one for whingeing and out of nowhere said, ‘That’s not good enough!’ Emma and I both laughed and some years later she told me on the phone that whenever she’s feeling slightly uncertain about life, she remembers Diana’s words.”

By the time Diana had suffered a second stroke in August 2011 she was already unable to walk or stand unaided. Gathered round the hospital bed, Paul and his three children were told that she would not survive and together they watched her slip away.

“I’ve always been terribly proud of Diana and no more so than following that stroke. In many ways those eight years were some of the most important of our marriage.”

Life is For Living – with Dementia by Paul Lamplugh costs £5, including postage and packing and is available by writing to 14 East Sheen Avenue, London SW14 8AS.

Help others through Post charity appeal

The Yorkshire Post is raising money to help some of those with dementia in our region this Christmas.

You can help raise money for the appeal, in aid of the Alzheimer’s Society, by bidding in our online auction. Bidding closes on the second 10 lots around 5pm on Friday and another 10 will go under the hammer on Saturday.

Visit www.yorkshirepost.co.uk/appeal to cast your bid.

The auction is sponsored by Leeds law firm Clarion and supported by Harrogate-based Cicada Communications. You can also send a donation by cheque, made payable to the Alzheimer’s Society, to: Yorkshire Post Christmas Appeal, Yorkshire Post, No 1 Leeds, 26 Whitehall Road, Leeds, LS12 1BE.

If you are a UK taxpayer, please enclose a Gift Aid form, available on the appeal page online, with your donation. This makes every £1 you give worth an extra 25p at no cost to you.