Laurie Graham’s husband no longer remembers their wedding, his address or even ever being diagnosed with Alzheimer’s disease

By Laurie Graham

PUBLISHED: 02:01, 27 October 2012 | UPDATED: 02:01, 27 October 2012

My husband is leaving me. No dramas, no slammed doors — well, OK, a few slammed doors — and no suitcase in the hall, but there is another woman involved. Her name is Dementia.

Let me tell you about my husband. He’s 66 years old. At first glance you’d say he looks very well. A little rumpled perhaps, and a bit slow-moving but when he troubles to wear his preferred silk bow tie and his felt fedora he still cuts a figure.

We met in London 16 years ago, a pair of middle-aged divorcees looking for another chance. He placed a personal ad, I answered it. We married two years later.

Howard was a high-energy New Yorker, a human dynamo. A year after our wedding, we moved to Italy and he created a successful tour business. He learned a new language, played tennis twice a week and was a typical Bronx motormouth with an opinion on everything.

Then six, maybe seven years ago, he started to become strangely forgetful. Nowadays he sits in a chair and waits for life to happen around him.

The things you and I take for granted —  catching a bus, paying a bill, remembering a birthday — are now beyond him, and his capacity to retain new information is down to about five minutes.

Here’s how it began. There were a few very minor things. He seemed to mislay his famous hat more frequently or forget the route to a shopping centre he’d driven to 100 times.

Then, in 2005, came what I now refer to as the Donald Incident.

Howard had an acquaintance, Donald. When we moved to Italy in 1999 they didn’t stay in touch but from time to time Howard would wonder what Donald was doing. So one wet Sunday we did a bit of internet sleuthing and discovered that Donald had died at a tragically young age, even for a smoker.

Howard was stunned by the news — but by the next morning he’d stopped talking about it. Months passed. Then, over dinner one evening, Howard said: ‘I wonder what ever happened to Donald?’ My husband has always been a gruesome joker but this seemed too black even for him. I replied: ‘You mean after he died?’

‘This isn’t mild,’ I said. ‘My husband doesn’t know where he lives.’

– Laurie visits the doctor with Howard

Howard dropped his fork. ‘Died?’ he said. ‘Died? When were you going to tell me?’

My first thought was that I’d made a mistake, that I’d imagined Donald’s obituary. Stranger things can happen. We went back to the computer and eventually we found the notice. Donald was still dead.

This shocking news — both the fact of the death and the fact of having forgotten about it left Howard reeling. But by the next morning he’d recovered. In fact he didn’t even mention Donald. Because, once again, he’d forgotten.

We have now revisited the news of Donald’s death many, many times. The pattern is always the same. Disbelief, shock, affectionate reminiscence. Then the file is deleted.

This is alarming stuff, I think you’ll agree. So did I run screaming to our GP and demand a battery of neurological tests? Nope. For three years I came up with one cockamamie excuse after another. My husband was tired, he was stressed, there was too much gin in his glass and not enough tonic.

And it wasn’t just me. Friends and relations elected to join me behind my smokescreen too.

‘Oh,’ they’d say, ‘I wouldn’t worry about it. I forget things all the time.’

Suddenly everyone and his Uncle Bill wanted to tell me how they often got to the top of the stairs and were then damned if they could remember why they went up there.

They meant well. They wanted to keep me in my comfort zone — it was nothing, it was just a blip — and they wanted to stay in theirs.

None of us wants to be reminded that dementia is random, relentless and frighteningly common. In the under 60s it affects around one in 1,400 people. For those around 70, the incidence rises to one in 100.

Memories lost: Laurie’s husband Howard does not remember the couple’s two wedding ceremonies, nor walking his own daughter down the isle

So, for a while, I came up with one crackpot explanation after another. Everything except the obvious, bleak fact: that when a person repeatedly forgets that someone died, there is something seriously amiss.

I had a partner in this exercise in self-deception: Howard himself. One of the many lessons I’ve learned is that in the early stages dementia, sufferers become very canny at patching over the holes. Questions that call for a precise answer get fudged.

‘Whatever you think, dear.’

Conversations become repetitious and filled with generalities.

‘Yes, well, you know…’

My husband, who had always been a powerful debater, sat in silence while the kind of political knockabout he used to enjoy went on around him. Jokes became his currency — not jokes of the ‘a man walks into a bar’ variety but little humorous deflections from anything that might betray the whopping great memory chasm opening beneath his feet.

The terror dementia sufferers must feel is unimaginable but the techniques they use to hide their difficulties — the ducking and diving and keeping the world laughing — are perfectly understandable.

If your flashes of merriment were once wont to set the table on a roar, then show the bastards it’s something you can still do.

Meanwhile other threads start to work loose. Bills go unpaid; little driving mishaps occur; at work an important ball gets dropped. In my husband’s case, it was a client who blew the whistle. She was a physician whom I had met socially. Perhaps that made it easier for her to speak to me — but I doubt it. It’s not a phone call anyone would choose to make.

Howard was, she said, delightful company and very well-informed  but he repeated himself so often that she believed he must be showing signs of mild cognitive impairment.

Mild cognitive impairment. Those three words have been our companions ever since, at least until this year when we were given a diagnosis of Alzheimer’s disease.

‘Mild’ is a weasel word. At the beginning it’s reassuring. If it’s mild it can’t be serious, right? Later, as the deterioration takes its toll, it becomes an annoying, inadequate word.

In one tense exchange with a neurologist who had used the ‘mild’ label, I couldn’t contain myself.

‘This isn’t mild,’ I said. ‘My husband doesn’t know where he lives.’

My husband said: ‘She’s exaggerating. I’m absolutely fine.’

And the neurologist said: ‘People with mild cognitive impairment always say that.’

And there you have dementia in a nutshell. The physician hesitates to name it, the sufferer denies he has it, and the carer’s hair turns grey.

‘This shocking news — both the fact of the death and the fact of having forgotten about it left Howard reeling’

– Laurie Graham on her husband forgetting a friend’s death

There’s no rush to diagnose. Wait and see is the usual approach. Sometimes people become forgetful for other reasons. They may be depressed or their thyroid may be out of whack.

Give Dementia time and she’ll announce herself clearly enough.

Meanwhile, what happens? Well,  little by little, your lives change but because you’re up close, living with dementia every minute of every day, you lose your sense of perspective. Are things worse today than they were last week? Possibly. Are they worse than they were a year ago? Undoubtedly.

Looking back can be a real shocker. I find it painful to remember what my husband was, because that person has gone for ever. On the other hand, we don’t have a lot of future to look forward to. We’ve already had a  couple of wobbles when Howard had to check with me that I am his wife.

There will inevitably come a day when he won’t know me. No past, not much future. Which leaves today. The moment. The thing philosophers  recommend we all live in. Now here’s a funny thing. My husband’s all-time favourite movie is Groundhog Day. And now we’re living it.

With Alzheimer’s, recent memory is affected first. At the start, you count the memory loss in days then hours — then in minutes. But there’s also an insidious backward creep of deterioration.

Howard can no longer remember our wedding 14 years ago. Actually our two weddings, first at the register office with just our children in attendance, and then in church, with all our friends. I catered our barn-dance reception myself and made my vows with cream cheese in my hair.

He doesn’t remember walking his daughter down the aisle six years ago nor any of the places we’ve been or things we’ve done together.

For my 60th birthday, we rented a villa in Provence and invited along two dear friends. It was a blissful holiday but for Howard it never happened, even if you show him a photograph.

Better, in fact, not to show him that photograph. To a dementia-sufferer, anything that seems like an attempt at jogging his or her memory is torture. There is no memory to be jogged. It’s like asking a man with no legs to dance. The kindest thing is rather to lead them to a place where they feel safe: the distant past.

Common diagnosis: Among people under 60, Alzheimers affects around one in 1,400 people, something which increases to one in 100 for those around 70

Howard has perfect recall of his childhood, his school friends, of the poems he learned at high school.  So that’s what we talk about, over and over.

Your world shrinks and the people in it change. Friends you’d have bet your shirt on fade away. They have their reasons. Some people can’t cope with illness, and you have to let them go.

It’s fine because other, often  surprising people step up and take their place. We used to be great party-givers. We had dozens of friends, we thought. Now we have a small circle of diamonds.

Then there are the advice-givers. If I had a pound for every time I’ve been advised to put Howard through a regime of mental gymnastics, I’d have enough money to buy a big gold watch. ‘Have you thought of Sudoku?’ they say. ‘Or crossword puzzles? Use it or lose it!’

And I either have to smile and thank them for their kindly-meant advice or, if I’m in a narky mood, explain to them that their advice sucks. My husband has already ‘lost it’ — and not because he didn’t use his mind. Quite the opposite. My husband is walking proof that the most agile mind in the world can be stricken by dementia.

It’s a sign of the times that some people think an hour a day in a mind-gym is all it takes. So many things are fixable these days, it’s hard to get your head around something that can’t be fixed.

I suppose it’s a good thing that at least people talk about dementia now. Not so long ago it was barely whispered. Softening of the brain was what it used to say on death certificates. And even in these times of full and frank disclosure, there are people who feel they must keep the condition under wraps.

‘There will inevitably come a day when he won’t know me. No past, not much future. Which leaves today.’

I met someone who was caring for her husband in almost monastic isolation because she felt she would be exposing and betraying him if she let his condition be known. That was a tragedy indeed. Caring is a hard enough profession without taking a vow of silence too.

Carers get a bunch of advice — look after your own health, plan for the future — but not always the support they need to follow that advice. One lesson I’ve learned is: ask and it may be given. Expect people to read your mind and they probably won’t.

Little things help. An hour’s respite from answering the same three questions is a treat. A Saturday afternoon of cheerful company is better than a week at The Ritz.

Planning for the future? Well, some of that is easier than you might anticipate, and some of it is impossible. I’ll deal with the  impossible first.

Almost all dementia sufferers eventually need full-time expert care. There are wonderful care homes with landscaped gardens and excellent, dedicated nurses, and most of us don’t have a  snowball’s chance in hell of  affording them.

My personal two-part plan for the future is as follows. One: to stay as healthy as possible for as long  as possible so I can look after the man I promised to care for in sickness and in health. Two: to take a large bucket of sand and bury my head in it.

I have also managed to take some practical steps. The words Power Of Attorney hung over me for years like a thundercloud.

Power of attorney allows other people to make decisions for you when you’ve lost the capacity to do it yourself. It might just be that you need a new pair of shoes. It might be that your house has to be sold. It’s quite a big deal.

One of my friends, a retired  lawyer, kept urging me to set it up but it seemed like the ultimate indignity. Howard had already forfeited his driver’s licence and his bank cards.

 

Then one day it occurred to me that I should stop being a sentimental baby and get on with it because I have to be the grown-up now. So I said: ‘I think we should set up power of attorney because you might need me to make decisions, and really everybody should do it because you just never know.’

And Howard replied, ‘Sure.  Whatever.’

I think he was kind of glad. When your memory is as holey as Swiss cheese, you don’t want to be  troubled with PINs and passwords and, ahem, memorable words. It’s a thought, isn’t it, that the silicon chip is a blessing until your memory goes? Then it’s a curse.

This year we reached a significant landmark. After the annual assessment of Howard’s cognitive slippage, his doctors felt the time had come to make a diagnosis.

It was delivered with velvet gloves and hushed voices but, frankly, after six years of deterioration it came as no surprise.

Actually it came as a slight relief because now I have a label, a useful shorthand for explaining to officials and new acquaintances what they’re dealing with.

But it is just a label. Dementia has all kinds of tricks up her sleeve, as varied as the personalities she attacks. In fact there’s a joke among carers: when you’ve met one case of Alzheimer’s … you’ve met one case of Alzheimer’s.

Howard himself received the diagnosis very calmly. We left the clinic and went to our favourite pub for lunch. Alzheimer’s wasn’t mentioned once. He’d forgotten what we’d just been told.

And that, I guess you could say, is the silver lining.

For more information about the disease, see the Alzheimer’s Society website, alzheimers.org.uk.

 

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