When your loved one is lost to Alzheimer's

By GEOFF CUMMING

Isla Munro knew things were going haywire when the cheques her husband wrote came bouncing back. Barry was always on top of the finances. She did the shopping, he looked after the accounts in his prompt, efficient way.

There'd been warning signs over the years. The 33-year Army veteran and car racing identity was fond of a joke. So when his speech became jumbled, his family thought he was being funny until it became obvious he wasn't joking.

He'd been an electronics whiz in the Army and then worked for Sanyo until he reached his late 60s. If anything technical needed fixing they took it to Barry.

But last year he couldn't get Sky TV to work. Isla eventually called in a technician who found nothing wrong. Barry had forgotten he needed to use the remote.

Since his Alzheimer's diagnosis five years ago, Isla and Barry have soldiered on in their home of 44 years at Forrest Hill, on Auckland's North Shore.

It's an immaculately maintained brick home, which has kept pace with the trends. They've had offers to sell, but Isla, who had a triple heart bypass in 1990, says "they'll have to take me out feet first. It's for the children".

But after the cheque-writing episode last year, they've had to remortgage. The money also helps to pay for Aricept, an unsubsidised drug that eases Alzheimer's symptoms and delays its progression. A 28-day course costs $226.

Barry, 79, is in the early stages of a degenerative brain disease which can last from three to 18 years. Like other dementias, it is irreversible.

"To look at him you wouldn't think there was anything wrong," says Isla, a retired district nurse five years his senior. "It's only his memory. Some days he's as lucid as anybody, others he's on another planet."

She needs regular intravenous medication for her heart condition, cannot drive and sometimes needs a walking stick. "If I fall over I can't get up because I've got no sternum."

She does twice-weekly tests for diabetes and her bronchial asthma causes "an awful cough which drives me up the wall".

But suggestions she put Barry in a rest-home run into a brick wall. She knows what she's in for, having looked after a 93-year-old neighbour with Alzheimer's until she had to go into a rest-home.

"She's well looked after in the rest-home. But just the thought of going into a place like that ... "

Dementia has become commonplace as people live longer. One in five people over 80 have a form of dementia; the ratio increases to one in three for the over-85s. An estimated 38,000 New Zealanders have dementia and 80 per cent are cared for by relatives. The incidence of early-onset Alzheimer's has increased, with people in their 50s and 60s showing symptoms.

But Alzheimer's remains an illness few like to talk about. There's a stigma - it's still seen by many as a kind of madness rather than a disease. Governments and drug funding agencies sweep it under the carpet, too.

No drugs can cure the disease but a couple - Aricept and Exelon - help to alleviate symptoms and can delay its progression. Pharmac says these benefits are not significant enough to warrant a taxpayer subsidy.

"The biggest problem we've got is having to pay this enormous amount of money out [for Aricept] each month," says Isla.

State-funded home help and other respite for carers is tightly restricted. Eventually, when there's no alternative but a rest-home, the patient's assets are stripped before the state will help.

In the United States, the late President Ronald Reagan's long battle with Alzheimer's helped to reduce the stigma and the Reagan name raised millions for research. Nancy Reagan's devotion to her husband raised understanding, although the help she could draw on was surely beyond that of ordinary caregivers.

Before Reagan announced his illness in 1994, many patients and their families hid the illness - in New Zealand that's still the case. Carers are reluctant to talk openly, partly out of respect to still-lucid loved ones who read newspapers.

While Alzheimer's follows a path, progressing from relatively minor incidents of forgetfulness to severe dementia in the final stages, there is a range of experience along the way.

Dementia specialist Dr Phil Wood says all patients follow the same decay curve to varying degrees. In general, once the symptoms show life expectancy is about 60 per cent of normal.

In the later stages, delusions and severe loss of function, including incontinence, are characteristic. While some patients are apathetic, others become hostile and aggressive.

"Society owes a lot to people's dedication to each other," says Wood. "The carer doesn't always get an easy ride. It's the bonding people have from strong and supportive marriages and their commitment to uphold their marriage vows, in sickness and in health.

"But the carer can become quite damaged by the process and the relationship doesn't always survive."

On a warm winter's afternoon in his corduroys, brown polo-neck sweater and new boatshoes, Barry Munro is as at ease on his comfortable, floral-patterned couch as any near-octogenarian. There's an occasional twitch of an eye, a barely perceptible shaking of the head - nothing you wouldn't associate with normal ageing.

"When I go to an Alzheimer's meeting and hear others talking I think at this stage I'm lucky," says Isla. "There are others a lot worse off than we are."

As Isla goes down memory lane, Barry smiles knowingly but struggles to recall places. His Army years (he was made an MBE in 1976) included several overseas postings. At one point he jokes: "I don't quite remember exactly where it was but I can tell you how to get there."

At another: "All these places are under the bridge. I've forgotten or I can't remember - one or the other."

Since the diagnosis, he's had three minor strokes and, says Isla, "each one sets the brain back a bit further".

For others, the degenerative path is steeper, the burdens greater.

Married mother of three Jenni, whose mother moved in for six years, says dementia is something she wouldn't wish on her worst enemy.

Eventually, her mother's geriatrician told Jenni: "If you don't do something soon it will be you that ends up in care."

The past two years in particular took a huge toll, she says. Her mother had no concept of time, became upset if friends visited, and followed her everywhere around the house. The 72-year-old is now in a rest-home.

"It got to the stage you couldn't leave her on her own any more because she would get so distressed.

"I believe it's the worst thing that can happen to you in your life. To get a dementia of some sort means you have basically lost who you are.

"The person you were is no longer there. At least with a physical illness you can still have a conversation and they are still in touch with the world.

"We have had to grieve for the loss of the mother we know yet we will lose her again when her life ends. That's so unfair. The person who brought you up and loved you has no idea who you are."

Jenni believes it's harder for a child to care for a parent with dementia than for a husband or wife.

"The roles are reversed - they become the children and we are responsible for them. It's quite different being the child in that situation.

"I was no longer able to do things for my family. I was relying on my husband to take care of them. People don't realise what an enormous commitment it is."

Black humour helped Margaret Thorne George and her late husband Godfrey to cope after his Alzheimer's diagnosis in the mid-1990s. He died early last year, aged 72, in a rest-home after spending all but the last two months at the couple's Coatesville home, a lifestyle block with a stunning native bush backdrop.

"Why would you take him away from this?" Margaret says.

She credits the support of relatives and the close-knit farming community, who tolerated Godfrey's eccentricities, and a tolerant employer allowing her to keep her part-time teaching job in Glenfield.

"One day I came home and he was wandering down the path naked. I said 'where are you going, Godfrey?' He said 'I'm going to put the rubbish out'. But he usually didn't wander much."

He did have access to a tractor and ride-on mower, though, and was pulled out of the ditch more than once. Neighbourhood trees also took a battering.

The retired marine engineer thought of his home as a ship in danger of sinking; the sound of running water would have him lifting rugs off the floor.

When Margaret challenged his delusions, he would usually come around.

"He remained fairly independent until the last stages. He wouldn't let me near the bathroom when he got quite bad. He would go to have a shower and have all the taps on in the bathroom.

"It was a very gradual process. Even to the end he had lots of lucid times when you could talk to him.

"He would get his words muddled up and say 'you'll have to excuse me - I'm going mad'. But people treated him fantastically. He didn't want to be treated like a 2-year-old.

"We kept on having people to dinner and going to restaurants - it's no use worrying what people think. That's not to say there weren't times I would go into my bedroom and cry myself to sleep."

Like the Munros, Godfrey and Margaret had no taste for rest-homes. But Godfrey's condition deteriorated in 2002 and, by the end of the year, so had Margaret's. She lost weight and was told by relatives she could no longer cope on her own.

Isla and Barry don't know how much longer they can cope at Forrest Hill. She's a stickler for tidiness and he's only too happy to help. "It's like having a shadow around you all the time," she says.

She misses their regular outings. She stopped driving after losing confidence following her triple bypass; she made Barry stop last year after he went forward into the garage wall instead of reversing.

Life revolves around a daily routine. A polished stainless steel sink bench is testament to Barry's cleaning fervour. He blames Isla's fussiness: "She's the boss. I do what I'm told."

After 57 years, the couple are still best friends. "We don't throw the crockery or anything like that," says Barry.

Isla: "We just plod along on our own quite well. I suppose we haven't got much choice, actually."

But if the routine is varied, particularly if Barry misses his afternoon nap, he gets irritable and starts to jumble his words.

After breakfast, he does the dishes and hangs out the washing. In the afternoon he brings it in, neatly folded. He makes the bed.

"I feel he has to do things, but if he's struggling I help him."

Isla could do with more help herself - not that she'd accept it.

"They keep asking us if we want extra help but I don't know what we would do with it. Everybody wants to help but I hate accepting help and so does Barry."

She has her own routine to keep to: a twice-weekly test for diabetes, daily peak flow and inhalers for bronchial asthma and regular intravenous medication for her heart condition.

"The doctor wanted me to go into hospital last week but I said I wouldn't go. I've got Barry up to a certain standard. If I'm away in hospital for any length of time he just goes to pieces. I can't go through that any more."

Their two sons live out of town but their daughter, who lives in Greenhithe and runs a day care centre, drops in regularly and takes them out.

"I can manage without her at the moment. I don't know how much longer I can keep going."

Monthly Alzheimer's Society meetings offer an outlet, encouragement and advice and the district health board provides one and a half hours a week home help.

"I'm only doing what everyone would be doing for their husbands and vice versa. It's an ordinary story." She pauses. "It's very difficult."

Before I leave, Barry takes me downstairs to inspect his garage, its walls lined with photos and memorabilia of his Army and car racing exploits, tools hung neatly from the rafters.

When it's time to leave he lingers. I ask: "Are you coming?"

He says: "I don't know."