Log In

Reset Password

How I cared for my ailing father, by Alzheimer's support group facilitator

JULIE-KAY Darrell knows what it feels like to look after a loved one gradually losing their mental faculties to the ravages of Alzheimer's. She was the principal carer when her father, head bartender Oliver Darrell, Sr. fell foul of the condition at the relatively young age of 60.

"It was his peers at work who first noticed something was wrong," Ms Darrell said. "They said he was mixing double shots and writing up inventories he'd already done.

"One of the factors that may contribute to Alzheimer's is when a person has been working in the same job for a very long time.

"The problem is when a person is doing the same thing over and over, they are not stretching their brain. As long as I can remember my father was working in the hospitality industry."

Ms Darrell lived downstairs from her father and shouldered most of the caring duties. Like all of those who care for dementia sufferers, she went through a difficult experience.

"Having to bathe someone who had bathed me as a child was something totally different to me," Ms Darrell said. "Telling him he had a doctor's appointment in an hour and then coming back to find he had forgotten about it and was not ready at all was strange.

"At night, he wandered around a lot, instead of sleeping. He was no longer capable of doing the simple things he enjoyed."

Good neighbours, who would keep an eye on her father while Ms Darrell was not home and an understanding employer, then Cable & Wireless, helped her to cope.

The stress and emotional disruption Ms Darrell experienced as she saw her father's deterioration was the reason why she got involved with the Alzheimer's Support Group. Mr. Darrell died last year after 15 years with Alzheimer's.

"I was living with an Alzheimer's sufferer in the household and I wasn't sure what to do," she said. "Someone told me there was a support group at the hospital and I went along and became part of the group from 1990. I found that talking with people from other Alzheimer's families helped me to cope.

"In the meetings we talk about our experiences and people cry and I cry along with them, because I know what they are going through. My motto is that if I can help someone along the way, then my life has been worth living."

Much is still unknown about Alzheimer's and although scientists have been unable to pinpoint a single cause for the condition, they have learned much more over the past 15 years about factors that may play a role.

Family history and increasing age are the two statistically greatest risk factors for late-onset Alzheimer's. By the age of 85, there is a 50 per cent risk of developing the condition.

Rarer types of Alzheimer's have shown up in just a few hundred families world-wide and have been linked to specific genes. Those who inherit these genes are likely to develop the disease before they reach 65 and sometimes as early as in their 30s or 40s.

Scientists believe that whatever triggers Alzheimer's begins in the brain years before symptoms occur. When those symptoms emerge, nerve cells that process, store and retrieve information have already begun to degenerate and die.

The Alzheimer's Association in the US estimates that 4.5 million Americans suffer from dementia and that the condition will become more widespread as the average age of the population continues to increase. Just how widespread the problem is in Bermuda is something of a mystery, Ms Darrell said.

"I have no clue how many people suffer from Alzheimer's on the island," she said. "There are people living in homes, or at home with caregivers, or in hospital and I don't know how many are out there.

"My sense is that it's a growing problem. Virtually anyone you speak to knows someone with Alzheimer's. Many times people just don't want to talk about it."

Ms Darrell works as an administrator at the Focus counselling service, based on Union Street. Part of her voluntary work with the Alzheimer's Support Group involves organising the meetings, which are held on the second floor of the old wing of the King Edward VII Memorial Hospital on the second Tuesday of every month. She also visits caregivers and families, as well as occasionally travelling to conferences around the world to hear the latest research findings on Alzheimer's.

Earlier this month, she went to a dementia conference in Atlanta, Georgia, with her colleague at the charity, Marcha Santucci. And she will head to Berlin for the 22nd conference of Alzheimer's Disease International, to be held from October 12 to 14.

"I always bring as much information back from conferences as I can," Ms Darrell said. "I can pass on what I have learned to the families and every bit of knowledge and information helps."

In Atlanta, she learned much about early-onset Alzheimer's, which strikes before the age of 65.

"I knew someone who suffered from dementia at 38 and another at 57," Ms Darrell added.

She would like to expand the operation, but the Group, which has been a registered charity since 1990, needs funds and even more importantly, more volunteers.

"I would like to see us have a support group at each end of the island," Ms Darrell said.

"Even if we managed to help only one more Alzheimer's sufferer's family, it would be worth it."

Caregivers are sometimes taken for granted by other family members and suffer emotional distress, lack of sleep and their freedom to live their own lives fully is often severely curtailed for many years.

"They need support and that is what we try to provide," Ms Darrell said. "I know one carer who was under tremendous stress and I kept telling her to slow down. Eventually she had a stroke.

"At the support group we like to have as many family members as possible ? caregivers, siblings, grandchildren. It's important that children know what's going on, so they understand why a grandparent might be acting strangely towards them. Children can be the first ones an Alzheimer's sufferer may lash out at."

It is now 100 years since German neurologist Sr. Alois Alzheimer described the condition. But there is still no cure and scientists have much to learn about the many different forms of dementia.

Symptoms vary widely, but the first sign is often forgetfulness severe enough to affect everyday functioning. Difficulty with language, confusion and getting lost in familiar places are also evidence of the progressive decline in mental function.

However, extensive and continuing research has given scientists some basic understanding of the disease processes at work inside the brain of a sufferer and there is hope on the horizon that one day there will be treatments that can delay, stop or even reverse damage to nerve cells. Some research has claimed that healthy lifestyle choices could at least help to delay the onset of Alzheimer's.

For example, a study by The Kame Project published in the in August this year, found that "foods high in antioxidants, such as fruits and vegetables, can reduce the risk of developing Alzheimer's disease".

It is also believed that regular exercise can help, as one factor in some types of dementia is blood supply to the brain, and maintaining a good cardiovascular system can maintain a healthy supply.

Some scientists have also concluded that "mental exercise", such as doing fast mental arithmetic or word games, can help to maintain brain functions.