- Sometimes her father would wear clothes on top of the ones he was already wearing, forgetting that he was fully dressed. Any attempts by his children to get him to remove the extra clothes invariably led to a confrontation.
- Before long, Ms Mutunga’s father started having trouble recognising some of his children.
- Then, in 2003, her father was diagnosed with Alzheimer’s disease.
- But what hit the family hardest was learning that the condition was not just incurable, but would get worse with time.
In 1992, Elizabeth Mutunga’s dad, a senior police officer, unexpectedly lost his job. He seemed to have taken it in his stride, and apart from the disappointment of losing a job he clearly loved, he seemed to be coping well. Meanwhile, the family decided to give him time to adjust to his new situation.
“It was a painful pill to swallow for my dad, knowing how much he loved his job,” Ms Mutunga says.
Nevertheless, he had to begin a new chapter in his life, so he started taking up small, part-time jobs and businesses to keep himself busy and his family afloat.
But after a while, Ms Mutunga and her siblings noticed that something was wrong with their father.
“Dad would look for the slightest opportunity to pick a quarrel with us. At first we thought it was normal for a tough man who had just lost his job to react like that,” she says.
Then 17, Ms Mutunga, the firstborn, always sought ways to intervene and cool down the situation.
“My father was the sole breadwinner so when he lost his job, I had to take up many of the responsibilities at home and help my mother.
"He would get extremely angry and ask who had given me permission to take over the household yet he was still around,” says Ms Mutunga. “One day he beat me so badly that he broke my hand.”
“As if that was not enough, he would threaten to kill me since he felt that I was defying authority,” she says.
But worse was still to come. “Dad would complain that something was wrong with his head. He would forget the days of the week and at times wake up on a weekday and tell the family to get ready for church, thinking it was a Sunday,” she recalls.
Sometimes her father would wear clothes on top of the ones he was already wearing, forgetting that he was fully dressed. Any attempts by his children to get him to remove the extra clothes invariably led to a confrontation.
Before long, Ms Mutunga’s father started having trouble recognising some of his children.
“That was the most painful thing for me because dad and I were very close. He was my hero and for him not to be able to recognise me broke my heart. My self-esteem was deeply affected by the insults he hurled at us,” she continues.
Then, in 2003, her father was diagnosed with Alzheimer’s disease. But what hit the family hardest was learning that the condition was not just incurable, but would get worse with time.
Dr Peter Mburu, a general practitioner at Concierge Health Ltd, says Alzheimer’s causes deterioration of the brain’s cognitive abilities.
“It is a condition largely linked to a person’s genes,” he says. “However, there are several cases of people without any family history of Alzheimer’s disease getting it. Its causes have not yet been established.”
Sometimes we come across people behaving in a peculiar manner and ignore them, or quickly attribute their odd behaviour to insanity, attention seeking, or even witchcraft.
However, according to the experts DN2 spoke to, what many people do not realise is that such people could be suffering from Alzheimer’s and need help.
Dr Mburu cites an incident that occurred in Nakuru as a case in point: “There was this guy who was arrested on someone’s farm for trespassing and taken to court. Unfortunately, the police locked him up, oblivious of the fact that the he was suffering from Alzheimer’s disease.”
Luckily, Dr Mburu was able to work with a colleague to place a medical claim in court so that the man could be released.
Perhaps it is such ignorance that leads to the loss of up to 1,104 lives to the disease annually in Kenya, according to World Life Expectancy, a leading health research organisation.
According to Dr Mburu, Alzheimer’s, whose main causes are yet to be fully understood, does not have a cure.
“The effects of the disease can only be slowed down but there is no known cure. Sadly, depending on the stage at which it is diagnosed, patients are given three to eight years to live,” he says, adding that that period could be shorter in less developed countries like Kenya since most of the research findings and statistics available are from the West.
Since few people know about Alzheimer’s, there is a general assumption that the disease and dementia are the same thing.
However, although related, they are different. Dementia is not a disease per se but encompasses a wide range of symptoms associated with a decline in memory and other thinking abilities severe enough to reduce a person’s ability to perform everyday activities.
Alzheimer’s is the most common form of dementia in the world today, accounting for 60 to 80 per cent of dementia cases. And contrary to popular belief, Alzheimer’s is not a normal part of ageing.
But it is also important to understand that the greatest known risk factor is an increase in age, with most people with Alzheimer’s being 65 years or older.
Most people whose loved ones have been diagnosed with the disease say it is painful watching a family member go down that way.
'DIAGNOSIS DIFFICULT TO ACCEPT'
Says Ms Mutunga: “The diagnosis was very difficult to accept and I went from denial, to anger and frustration, and even depression, before I came to terms with the reality facing our family.”
She adds, “I remember having to put aside my plans to take care of the family. I had to suspend school for a while and ensure that my siblings got a basic education.”
And when she thought things couldn’t get any worse, she had to face gossip from her neighbours.
“People in the village did not believe that my father was ill and accused us of bewitching him. Even the most regular visitors stopped dropping by our house,” she says bitterly.
She tried looking for a support group or people she could talk to, in vain. Her search on the Internet was equally fruitless. Lack of a support group, coupled with the need to open up about what she was going through taking care of her ailing father, is what prompted her to start the Alzheimer’s and Dementia Organisation of Kenya (ADOK) in 2007.
SUPPORT FOR CAREGIVERS
The organisation today not only offers support to caregivers of Alzheimer’s patients but also trains them on how best to take care of them.