Yvonne Roberts 

He sings to Doris Day

How does it feel when, after a lifetime together, the one you love loses their memory? Yvonne Roberts reports.
  
  


Leslie Smith is 61, but looks younger. In 1987, he slipped at work and injured his back. "They told me I wouldn't walk again but I've never been one to say that's it. If I'm told that I can't do something, I do it. Until this," he says, shaking his head in bewilderment. Last year, Leslie suffered two major strokes and his memory has recently shown an alarming unwillingness to retain and assimilate basic information. It means he may hold a toothbrush in one hand and toothpaste in the other, but fail to connect the two. It means growing conflict with his wife, Anne, as he repeats himself again and again - and it means the instant erasure of shared experiences.

Anne says they recently attended a wedding. Five minutes after they'd left the reception, for Leslie, it was as if it never happened. "It's bad for me but it's very frustrating for her," Leslie says. "I can tell you that I passed my driving test in October 1964 and my first car was a Ford Anglia, but I can't tell you how I got here this morning. Sorry," he adds, and his eyes fill with tears.

Memory loss is devastating for the individual but also acutely painful for the family. My father is 84. He and my mother have lived in a variety of countries - Spain, Singapore, Korea, Pakistan - and my father's store of anecdotes is vast. In company, my mother would begin yet another saga , "When we were in the north-west frontier ..." Then my father would finish it. Or vice versa; a perpetually entertaining double act.

My dad is self-taught and has a huge appetite for learning. In his 70s, he began to teach himself Russian. He could already speak Spanish, French, Urdu and a bit of Italian. Now, as Alzheimer's disease (AD) takes its toll, even his mother tongue of Welsh is forgotten. Until six months ago, at family meals, my dad would raise a toast and say, in his beloved Spanish, "Amor, salud y pesetas y el tempo para gustarlos ..." Love, health and money and the time to enjoy them. Four months ago, he could say, "Amor, salud y pesetas y el ..." Then his memory would fail.

In the past few weeks, the words have been lost forever, as have all the verbal pictures of a life lived around the world. Only a glimmer of his wonderful humour remains and we hold on to that desperately. It means that for now, at least, he retains a vital sliver of his old self. "We miss our conversations, don't we?" my 82-year-old mother says to my dad. Her stoicism, loyalty and love is unstinting in spite of a marriage now of solitary confinement. She misses the double act. So do we all.

Leslie Smith is much younger than my father. Today is his first appointment at one of the few memory clinics in the UK. The renowned Memory Assessment and Research Centre (Marc), based at Moorgreen hospital in Southampton, is headed by Dr David Wilkinson, a consultant and pioneer in old-age psychiatry. As well as research, the clinic assesses memory loss, fine-tunes drug therapies and supports carers.

It has around 4,500 potential patients - over half are likely to have AD; the remainder include those with mild cognitive impairment (memory loss without confusion or language difficulties) and depression, as well as "the worried well".

"Ten years ago," Wilkinson says, "doctors would tell a patient, 'You've got a bit of a memory problem, don't worry about it.' Now, old-age psychiatry has undergone a revolution. There is something we can do."

Leslie is given a series of tests to assess his brain functions. On the evidence of his medical history, his wife's description of recent weeks and test results, Wilkinson gently says AD is probable, made worse by the strokes. A brain scan will bring more certainty. "I thought he would be given a few mental exercises to sharpen him up," says Anne. "This is like a punch in the face."

Helen, 65, and her daughter, Jane, are also at Marc. Helen recently took early retirement because of a slipped disc. She is taking painkillers, anti-depressants and sleeping pills. "We treat her forgetfulness as a bit of a family joke," says Jane. "She forgets the odd word - but we all have little slips."

Once Jane leaves the room, another aspect of memory loss is exposed. Those who suffer it often conceal its extent - as my father did - because of a mixture of pride, self-denial and the view that it's the price of old age. "Don't bother the doctor" is a very British attitude, even if you fear you're losing your mind. In Germany, it's 10 months before AD is diagnosed. In the UK, it's 32 months.

"I just feel so silly, so useless," Helen says. Again, tears are close. "I don't even remember my grandchildren's names. I forget more than anyone knows." Wilkinson says he will change Helen's prescriptions and she will have a scan. "She's experienced a major change in retirement. We'll help her to sleep better and when her back improves, so probably will her depression and her memory. I think she'll be fine."

Aricept, Exelon and Reminyl are drugs that anchor the memory for a period in around 60% of mild to moderate cases of AD. A fourth drug, Ebixa, is used in more advanced cases. The cost is £100 a patient a month - a fraction of the price of intensive residential care. In Italy, 80% of physicians prescribe AD drugs, in the UK the figure is 20%. And it's likely the National Institute for Health and Clinical Excellence will recommend next year that these drugs are no longer available on the NHS.

"The NHS has become a lottery forcing some people to pay privately and refusing others," Wilkinson says angrily. "We are talking about a disease that will be the scourge of the next 30 years. This is ageism. It destroys families and hinders research."

Aricept was licensed in 1997 and Rose Wingrove campaigned to persuade her health authority to prescribe it for her husband, George. It refused. "He would say our daughter was his sister ... It used to upset me but I don't let it now," Rose says. A year ago, George began constantly shouting. Now he is on Risperdol, a sedative. "He sleeps a lot," Rose says. "But it helps me cope."

Rose, 77, says George would drive to work and forget where he was going. "I don't know what he did all day. Neither did he." That was 19 years ago. Uncharacteristic bursts of aggression eventually led to the diagnosis of AD.

Their sitting room holds photos of George's children and grandchildren, as well as tapes and videos of crooners and musicals from the 30s and 40s to feed George's memory.

"He remembers songs. He'll sing along to Doris Day, Mario Lanza, Al Jolson," Rose says. "I try to keep his mind busy."

George, a handsome man, was once a boxer. Rose has to wash and dress him now because, like my father, he has forgotten how. I ask Rose if she misses sharing memories of their 56-year marriage with her husband.

"I do. It can be lonely. It's not what I expected. People say he's done well because I've kept him stimulated. I hope he's a happy soul. Inside, I remind myself, he's still George."

 

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