It’s sad seeing a loved one drift away

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By JULIE AMBANI

In 1992, Elizabeth Mutunga’s dad, a ranked 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, who is the first born, 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.

There might not be a medical cure for

There might not be a medical cure for Alzheimer’s, but love is the emotional cure the patients need – Elizabeth Mutunga, whose father suffers from Alzheimer’s Disease. PHOTO| COURTESY

“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 is a disease that 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 a people could be suffering from Alzheimer’s disease 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 liaise 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 third world countries like Kenya since most of the research findings and statistics available are from the West.

Since few people know about Alzheimer’s disease, there is a general assumption that Alzheimer’s 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 disease 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.

Dr Peter Mburu, a general practitioner at

Dr Peter Mburu, a general practitioner at Concierge Health Ltd, says Alzheimer’s is a disease that causes deterioration of the brain’s cognitive abilities. PHOTO | JULIE AMBANI

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 by 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.

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.

Commending Ms Mutunga for initiating a support system that Alzheimer patients and caregivers can identify with, Dr Mburu, however, adds that the government should invest in facilities that help cater for those suffering from Alzheimer’s.

“We also need more specialists (neurologists) to be able to cope with the rising cases of the disease,” he adds.

During one of ADOK’s monthly meetings, family members of Alzheimer’s patients broke down as they recounted their experiences. In the friendly and safe environment of the group, caregivers opened up about some of the challenges they faced.

 “My father is 75 years old and has had Alzheimer’s Disease for several years now. Many are the times he has disappeared and got lost or injured himself as a result of disorientation. I have found him eating dirt several times, not aware that it is dirt he is eating. At other times he wets himself and just sits in the mess, not knowing what to do. It hurts to see a loved one behaving in such a manner and knowing there is nothing you can do to reverse the situation,” one recounted emotionally.

But despite the serious challenges, most speakers acknowledged that the best way of helping an Alzheimer’s patient is showing them love.

“There might not be a medical cure for Alzheimer’s,” says Ms Mutunga, “but love is the emotional cure the patients need. This love and support can prolong the years they are expected to live.”

Ms Wambui Karanja, another caregiver at the meeting, also shared her experience.

“I am a student at Kenyatta University, and at my age I never imagined going through such a life-changing experience,” she said.

‘GETTING CONFUSED ABOUT HIS WORK’

“My father was a very good teacher, so when he started getting confused about his work, we realised immediately that something was not right,” she recounted. “He would forget that he had given his students an assignment and end up issuing multiple assignments at the same time, which confused the students as well.”

But Assignments were not the only things Ms Karanja’s father forgot. “He would go somewhere and forget why he was there, and even how, he got there,” Ms Karanja narrated, “and worse still, he lost a lot of money by misplacing it or simply not remembering where it was.”

After a while, Ms Karanja’s family decided to seek medical intervention.

“We moved from doctor to doctor trying to figure out what the problem could be,” said Ms Karanja “and eventually, in 2014, my dad was diagnosed with Alzheimer’s Disease.”

Coming to terms with her father’s situation was tough. “I was devastated. My father always held pearls of wisdom as I grew up and he was my rock,” she offered “and I watched him disappear behind the disease. There is nothing as painful as losing a loved one in that manner because it is the same person, but at the same time it is a different person.”

“I always shared my accomplishments with my father, but I can’t do that anymore,” said Ms Karanja emotionally.

Three years down the line, however, Ms Karanja is stronger, with a purpose in life.

Members of the Alzheimer's and Dementia

Members of the Alzheimer’s and Dementia Organisation of Kenya share their experiences during one of their monthly meetings. PHOTO | COURTESY
     

“Caring for my father has made me a completely different individual. My priorities, compared to my agemates’, are completely different,” she says. “I have a purpose in life: to work with dementia patients. I plan to study dementia and health policy.”

She adds: “Through taking care of my dad I have realised that one of the best ways of caring for Alzheimer’s patients is simply by being their best friend. This makes them comfortable and you will share special moments together, rare though they might be.”

Wambui is a testament to emerging stronger from tough situations. “I am the current African coordinator for World Young Leaders in Dementia,” she offers, “and it is something I am passionate about and would encourage young people to join the community working in the area of dementia.”

More Kenyans are becoming aware of the disease and seeking help on how to handle patients. However, there is a need to create dementia-friendly communities that do not stigmatise people suffering from the disease as this can help them and their caregivers cope better.

The most common early symptom of Alzheimer’s is difficulty remembering newly learnt information, such as the name of a place or an individual. This is because changes in the brain begin in the parts that affect learning.

As the disease spreads, it leads to increasingly severe symptoms, including disorientation, mood and behaviour changes, increasing confusion about events, time and place, unfounded suspicions about family, friends and professional caregivers, and difficulty speaking, swallowing and walking.

Though mostly hereditary, a person with no family history of Alzheimer’s can still get it.

When symptoms associated with the disease are diagnosed in a patient, a neuropsychology evaluation is carried out, as well as MRI scans to monitor the brain’s activities.

Shrinkage of the white brain matter is a sign that one could be suffering from Alzheimer’s disease.

In addition, a biochemical test using an individual’s cerebral-spinal fluid is also carried out. However, these tests are quite expensive and not available locally.

Even though there are no conclusively established causes of Alzheimer’s disease, eating healthy and exercising can help maintain normal brain function. There is no direct link between the occurrence of Alzheimer’s disease and other diseases. However, a person suffering from Alzheimer’s is prone to diseases such as pneumonia, bed sores and infections since their immune system is weakened.

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