Tuesday 25 October 2016

'When dementia has robbed a person of so many of life's pleasures what do you do?'

Writer Laurie Graham's husband Howard was diagnosed with Alzheimer's three years ago. She writes about the tendency of those afflicted with the disease to wander and the challenges of keeping them safe

Published 14/07/2015 | 02:30

Laurie and Howard Graham. Photo: Steve Humphreys
Laurie and Howard Graham. Photo: Steve Humphreys

They say every case of Alzheimer's disease is different, and yet, when carers compare notes, there are always recurring themes - the wandering tendency is one of the most common. So I read last week's reports of John Noakes's walkabout with a pang of recognition. The 81-year-old former Blue Peter presenter was found, disoriented and dehydrated, at the bottom of a storm drain in a strawberry field last week, less than a mile from the holiday home in Mallorca where his wife, Vicky, had reported him missing 10 hours earlier.

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My husband, Howard, only 69 but now three years on from a diagnosis of Alzheimer's, was never interested in country walks when he was well, but he certainly went through a walkabout phase of his own fairly soon after his diagnosis.

Why do people with dementia wander? It begins inadvertently. They set off with a goal in mind - to buy a newspaper, to meet friend at the pub - then forget where they're going and why. But I believe that as the disease progresses, there is something else at work: a last-ditch attempt to reclaim dwindling independence or a restless search for the thing they're losing - their memories, their very self.

For carers, wandering is much more than a practical problem. It's another blow: the threat of a physical loss only compounding the emotional one that accompanies the diminution of your role from spouse to carer.

Bad enough that you're watching a personality slowly disappear, without the panic of finding an empty chair and an open door.

But as numbers of those diagnosed with dementia rise dramatically - 48,000 people in Ireland now have it, and the number is expected to increase significantly rising to 132,000 people by 2041 according to the Alzheimer Society of Ireland - more of us will be party to these disappearing acts.

All cases of dementia are progressive; the delicate structures and chemistry of the brain grow increasingly damaged over time. The ability to remember, understand, communicate and reason gradually declines. Those with the disease lose the ability to make judgments, as well as meals.

Sometimes the frustrations result in irritation and anger, even violence. Love may be expressed in cuddles, though often one-sided, but little more.

As the disease progresses, the memory lapses grow more obvious - the need to eat, wash or use the lavatory. Forgetting they are a father or sister or spouse, leaving those around them trapped in a living bereavement. Gradually, dementia can strip away the power of speech and the ability to swallow. Peace of mind might be lost to hallucinations and waking nightmares.

Your spouse may have been a stalwart breadwinner or the heart of the family, the life of the party or committed to the welfare of others, but they invariably end up with just the most child-like of abilities, senses and needs. Dementia holds many ways in which to lose a loved one.

Howard's most distressing walkabout episode happened two years ago, as we were showing friends the sights of Dublin, where we live. Howard needed the men's room, and as the closest place was in a large shopping centre, the other male in our party kindly and discreetly managed the situation by announcing that he needed to go, too. Off they set.

Twenty minutes passed. Howard does walk slowly. Thirty minutes, and my "Alzie" radar started beeping. Something must be wrong. Then came the call from Howard's distraught chaperone. He'd lost him. They'd each gone into a stall, and Howard had somehow given him the slip.

I called his mobile phone. It was off. Given Howard's slowness of movement, I figured he couldn't have gone far, but a message on the shopping centre's public address system, followed by a frantic scan of the security cameras, produced no sign. Dublin is a big city. The staff recommended we inform the police. Could I give them a description of my husband? In my mixed mood of fear and frustration, I exacted a sly revenge. Being a carer doesn't make you a nicer person.

''My husband,'' I said, "looks like a younger version of Teddy Kennedy.'' I could deal Howard no greater insult - he hated this oft-remarked-upon likeness to the "senator of sleaze" since the events at Chappaquiddick.

While the police were on the lookout for a slow-moving Teddy Kennedy lookalike, I swung between terror and fury: terror that he'd walk under the wheels of a bus; fury that he was ruining our friends' trip to Dublin.

Howard had been missing for three hours when my phone rang. "And where the hell are you?" he asked.

By luck, and using his remaining cognitive abilities, Howard had managed to reach home. Having exited the lavatories, and completely forgotten about the friend who'd accompanied him, he had found the nearest escape route from the crowds and noise of the shopping mall. There was a taxi rank outside, Howard had money, and he knew our address. Funnily enough, though he doesn't always know who I am, he still knows where he lives.

Our walkabout story had a happy ending but, once again, I had found myself behind the curve with Alzheimer's, having misjudged what my husband was still capable of. He had got himself home safely, but it had taken him hours to work out how to switch his mobile back on to contact me.

Friends once suggested getting him a smartphone so I could track him by GPS. But it was a short-lived and costly mistake - people with Alzheimer's can't learn new things.

The wandering tendency - getting lost - is an eloquent expression of dementia when you think about it. My husband was once a powerful debater. Now his mind meanders, skips, forgets where it was going. The man I married almost two decades ago has gone. He still looks the same, but his personality, his talents, the essence of the man have mostly disappeared.

The silver lining to this cloud is that he doesn't realise, any more than he realised - or cared - that we had had the police looking for him that cold Dublin afternoon.

My reaction, when Howard was found, was exactly that of a parent whose child has been missing: relief and anger in equal measure.

He was indifferent to my emotions: another typical dementia trait. When I read that Vicky Noakes took time for a cup of tea before setting off for the hospital, after John was found, I wished I could have put the kettle on for her. I've been known to reach for something stronger than tea.

The one boon to Howard's increasingly bad knees and aching ankles is that this period is history now. He no longer wanders. He walks with difficulty, and his self-confidence is so shattered that he hesitates even to go from one room to another without checking with me first. The outside world has become a huge and frightening maze. We walk to the bus stop we've used for five years, and he says: "Amazing. How do you remember where to go?"

Still, when we're away from home and he uses the public conveniences, I station myself firmly by the exit like a mad woman with a fetish for gents' lavatories. Sometimes I watch my dear husband emerge, slowly shambling, no idea where he's going, and I feel very protective of him.

On bad days I think, 'How am I supposed to go to the ladies and leave him unattended?' He might follow me in there and cause a scene. He might set off for Land's End. With dementia, you just never know. Maybe carers should wear a little identifying badge so we can spot one another in public places. I'll keep an eye on your loved one, and you can keep an eye on mine.

I don't know how far along this hard road John Noakes and his wife are, but I hope the walkabout tendency doesn't cause them any more trouble. What do you do when dementia has robbed a person of so many of life's pleasures that all they have left is to walk?

Who wants to live with barred windows and bolted doors?

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