In sickness and in health
Marianne Rumens spent more than 15 years caring for a husband with a rare and disturbing illness. In the end he went missing and was sadly found dead in a ditch.
Marianne Rumens spent more than 15 years caring for a husband with a rare and disturbing illness. In the end he went missing and was sadly found dead in a ditch. Their story, told in a newly-published book, is tragic but also uplifting. SHEENA GRANT reports.
WHEN Tom Rumens went missing from his respite care home, sparking a nationwide search that lasted until his body was found eight months later, his wife Marianne started to write.
At first, she wrote out of anger that her brilliant and successful husband, a former Naval officer and high-level planning advisor, had fallen prey to a little-known and less understood disease that had ravaged his mind and personality.
She wrote out of anger that he had gone missing, anger that she did not know where he was and guilt that she had sent him for a few days respite care so that she could have a break from being on duty 24 hours a day, 365 days a year.
After his body was found, overwhelmed with grief, she threw the pages into the bottom of a drawer.
They stayed there for another four years, until Marianne resumed writing what has now become a book, published to help create a wider understanding of Pick's Disease.
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The story is that of Marianne, Tom and their young son, Thomas. Although Pick's, which is a rare form of dementia, is a cruel and disturbing illness, Marianne's book is a warm and tender piece of prose.
Yes, at times life was almost unbearable but it was also funny and bizarre.
Marianne, who lives near Stowmarket, says a thread of humour runs through the book, despite the dark subject with which it deals.
But ultimately, what shines through its pages, is an enduring love that transcends the horrors life can arbitrarily deal to us all and a realisation that there, but for the grace of God, goes any one of us.
“Although I started writing when Tom was missing, which helped me a bit, I did not really complete the book for me,” she said. “I did it for Tom.
“I have told my story. Sometimes it's not very nice about me but it is to try and help other people who are caring for people with Pick's and to raise awareness about this illness.”
No More Apples For Tom also includes a chapter written by Professor John Hodges, of Addenbrooke's Hospital, explaining the symptoms and effects of Pick's Disease, which affects the part of the brain controlling social conduct.
Marianne, who is now 68, can trace the beginnings of Tom's illness back to the mid 1980s, when the family returned from the Middle East. Tom was having fainting fits and was becoming “a little forgetful”.
He would put a bag on top of the car and drive off with it still there. Sometimes, he drove into town but would return on foot, having forgotten he had taken the car.
The couple's son, Thomas, born in 1981, was only a few years old but Tom, who was 12 years Marianne's senior, was already in his late 50s.
“People can have Pick's Disease for years,” she said. “It developed very slowly and, although I asked him if he was all right, he was in denial that anything was wrong.”
Gradually, his behaviour became more bizarre. There were episodes of driving over instead of around roundabouts. Marianne insisted he see a doctor and he was referred to a psychologist for tests.
“They said everything was all right; that it was depression. He was weeping a lot and yes, he was depressed but I knew there was more to it than that.
“Tom presented extremely well as a very articulate well-spoken man even when he was very ill. If he couldn't remember a name he would work his way around it so that the conversation did not sound odd.”
By the late 1980s, concerns about Tom's health were compounded by financial difficulties that forced the family to forsake their lovely Suffolk home, move into a caravan on their adjacent field and eventually decamp to a ramshackle property they owned in Spain, where they were to spend the next nine years.
Tom's behaviour continued to become more unpredictable until the unthinkable happened: he hit his wife.
“This man was the gentlest, kindest man,” said Marianne. “He did not believe in violence and did not really even shout but he knocked me out.
“He came back to England to see the doctors and eventually, in 1995, he was diagnosed with Alzheimer's Disease. I was told there was nothing that could be done and we went back to Spain.”
Marianne joined the Alzheimer's Society and after reading an article in its magazine, wrote to Professor Hodges. The professor asked to see Tom and after a week of tests he diagnosed the lesser-known and less common Pick's Disease, not Alzheimer's.
The family went back to Spain once again but with life spiralling further out of control they finally returned to England in 1999.
“Tom kept running away. We lived in the mountains and he couldn't speak Spanish,” said Marianne. “The Spanish people knew him and were very kind but it was a terrible worry.”
As his memory disintegrated Tom became an increasingly obsessive letter writer, penning notes to the mother and father he no longer realised had passed away years before.
He also became obsessive about something else: apples. It was all he wanted to eat and would devour them one after the other, hence the title of Marianne's book.
“Tom would always be running off looking for his mum,” she said. “First of all I got mad. I told him his mother and father were dead but he would still give me letters to post to them.
“We did have a lot of fun times as well. There were times when he was lucid and people would turn to me and say, there is nothing wrong with him.
“There were also times I couldn't stand him. I think this is quite a normal feeling. You are not human if you don't think, I can't stand it any more.”
Tom also developed a hatred of washing and changing his clothes, which was completely at odds with his former attitude to personal hygiene.
At times, the pressure became too much and Marianne needed a break. On these rare occasions, she would find a respite place for him for a few days. He escaped soon after arriving at one care home in Stowmarket and the staff refused to have him back.
“Nobody wanted him but poor old me,” said Marianne. “I hope this sort of attitude is changing.
“I became like his mum and he had always been the kind of man to look after me. He was old-fashioned; so lovely.”
She was consumed with guilt each of the three short times during Tom's illness that she made use of respite care.
“You promise till death do you part, in sickness and in health but I needed a break,” she said. “I wanted to sleep or to colour my hair or have my hair cut.”
In addition, she worried about her young son, Thomas, and the effect his father's illness was having on family life.
Thomas was at university in Loughborough when his father went missing for the final time. Marianne arranged some respite care in Knodishall, near Leiston, so she could collect Thomas from university and have a much-needed break.
Tom had been in the home less than 24 hours when he went missing.
“I did feel sick with worry but I thought he would come back,” she said.
But at the days turned into weeks and weeks into months it became clear Tom was not going to return.
There were possible sightings of him all over the country but Marianne says she knew the people who reported seeing him were mistaken.
“The police were wonderful and the lowland search teams were brilliant but I thought quite early on that he had died. You just want to know what has happened. That is the thing. They are always in your mind. What has happened, where are they and did they suffer? Was it a horrible death?”
Tom's body was found in a dyke near the Minsmere nature reserve in February 2002.
In the book Marianne writes: “My man, that brainy beautiful person that I had fallen in love with all those years ago, was, hopefully, in peace and at rest. His torment was over. Perhaps he had found his mum and dad. I hope he did.”
No More Apples for Tom is available from Stowmarket Bookshop and Diss Publishing. It can also be ordered on-line at www.wdi-fusion.co.uk . Go to 'home and garden' and select 'books' or click on 'the story of one carer' from the 'Articles' drop-down menu
Pick's Disease is named after Arnold Pick, a 19th Century Professor of neuropsychiatry in Prague, who described progressive loss of language ability and alterations in social behaviour among the patients he observed.
In more recent years it has also become known as frontotemporal dementia, or FTD, because it causes the frontal and temporal lobes of the brain, which control speech and personality, to slowly atrophy.
The behavioural form of this rare disease, from which Tom suffered, is characterised by changes in social conduct.
The onset is insidious and often hard to date. It can appear to represent an exaggeration of pre-existent personality traits rather than a distinct change.
It typically takes many years for patients to be accurately diagnosed.
Patients themselves often remain blissfully unaware of the changes in behaviour.
Patients can lose interest in their hobbies and become apathetic and seemingly depressed.
Disinhibition is also a common early symptom with patients often making tactless, inappropriate personal remarks. Abnormal eating behaviour is also very common and table manners become non-existent in the rush to feed an insatiable appetite. Many patients will also develop ritualistic behaviour, such as becoming preoccupied with counting or clock watching.
Other symptoms include neglect of self-care and lack of empathy with others.