Blog

Alzheimer’s robbed us of our beautiful mum

 

Our mother experienced a sudden memory loss sometime in 2011. It all started when some women in a group where she was the treasurer told us that she wasn’t keen at her job in the group. They also accused her of receiving money from other members and denying she had taken it. After a few such incidences, they reached out to us and this was the beginning of our journey with Alzheimer’s.Before her friends reached out, she could complain of losing something only to find it safely kept in her bedroom.

We always laughed it off but little did we know it was a health condition that needed medical attention. Our father would joke whenever this happened and could tease us to get her a psychiatrist. But we all got concerned when she started acting insecure and hiding household items such as sugar, flour and even utensils in the garden. We would search for these things only to find them rotting in the bushes many days later.

Then she started mixing up our names. Sometimes, she would veer off from a topic and talk about unrelated things. She often talked about her childhood experiences and would pester us trying to find her way to a primary school she had attended. She said she wanted to go to school. And she was always restless, trying to do one thing and abandoning it to do something else.

In our Kamba community, my mother’s condition was majorly linked to witchcraft. So the first thing we thought of was taking her to a traditional healer. In 2012, we visited many different traditional healers whose intervention didn’t help. Instead, her condition only got worse.

She started getting withdrawn and would look the other way when she was talked to. It was at this point that we took her to St Francis Community Hospital in Kasarani where tests revealed that she had depression.She was put on medication and discharged on instruction that we monitor her condition for two weeks. Nothing changed. Two weeks later, she underwent organ tests that revealed she was okay. I searched on Google the name of the medicines that doctors gave us and found out that they treated depression, Alzheimer’s and other mental problems.

I ruled out depression and linked all the symptoms my mother portrayed to Alzheimer’s disease.We went to Kijabe Hospital in 2014 to seek a different opinion. Here, a brain scan revealed that our mother was okay. It was frustrating not getting to the bottom of what she was suffering from. The doctors warned us that should the drugs they gave our mother fail to work, then it was possible that she was experiencing early signs of Alzheimer’s. They explained that the condition couldn’t be treated but only gets worse with time. That it could only be managed. We were shocked at the doctors’ pronouncement but somehow, we are coming to terms with the fact that people age differently.

Remembering to Love Those Who Forget – Dementia Stories from Kenya

Imagine dying because you forgot to breathe. Joel Kasimu was a policeman, an Officer Commanding Police Station (OCS). His wife, Rose Wambui , described him as a patriotic man who lived to serve Kenya, “He was so proud of his job, how he would get up, dress and prepare for work in his uniform,” she explains, lifting her chin to mimic his posture and recalling how the 6-foot-tall man stood akimbo in his uniform, ready to leave home and serve the nation. Having suffered from diabetes, he reluctantly went on early retirement in 1985 on medical grounds at around the age of 55. Mr. Kasimu did not know his exact age. It was the time when you started school once you could touch your left ear with your right hand by passing it over your head.

A couple of years after his retirement, in 1989, Joel’s eldest daughter from his first marriage died of cancer. His first wife had also died years back and that was when he married Rose. In a short span of time Joel had lost both his work and a daughter. Elizabeth Mutunga, his first daughter from the second marriage, described the conspicuous changes that led the family on a 17 year journey of turmoil in the home. Changes that left them perplexed at to what was really happening. “First, he moved us from a four bedroom maisonette into an iron-sheet building round the corner. Then he sold his car, but first he sold the tyres then the body.” With time, things got worse. Mr. Kasimu would want to go to church on a Tuesday. When the family told him they would go on Sunday as they always did, he would get agitated and restless. He was a knowledgeable man, who served his country as an OCS, how could they patronise him in that way?

When Elizabeth finished high school in 1992, she took up her first job as a laundry operator at the Nairobi Safari Club, for a salary of 5,000 Kenya Shillings. With the changes in the home, this enabled her to support the family. “Dad beat me until he broke my arm,” she shares, maintaining eye contact, not letting her head drop at this painful memory. Joel thought Elizabeth was interfering with his ability to take care of his home as the head of the family. The reasonable, well weighed father was gone and in his place was a man trapped in his long-term memory whilst losing his sense of the immediate world around him – this terrified him as much as it did his family.

Read the full story on here on  ByAWoman

Dementia claimed my dad as I helplessly watched him

Dementia

Elizabeth Mutunga, the chief executive officer of Alzheimer’s and Dementia Organisation of Kenya, speaks about her family’s experience with Alzheimer’s at her home in Lang’ata on September 18, 2019. PHOTO | KANYIRI WAHITO | NATION MEDIA GROUP

As the world marks World Alzheimer’s Month, Elizabeth Mutunga, 44, shares about her family’s experience when her father was diagnosed with the disease.

“Dad was diagnosed with Alzheimer’s during one of his regular appointments in 2007. By then, the condition was seen as a white man’s disease.

I had enrolled for a counselling course around the same time, and I decided to research more on the condition and wrote a special paper.

These research showed that my dad had carried the symptoms for 17 years yet it was misdiagnosed.

Let me go back to the beginning. In the early 1980s, my dad had been a high-ranking policeman. Whenever he came back from work, he would sit and read to us in his uniform.

Mum was the disciplinarian, so my three siblings and I would always run to dad a lot after fighting with her.

In 1985, he went into a diabetic coma and was in the hospital for a while. This meant that he had to be retired early on medical grounds.

CANCER TRAGEDY

I was in Class Five and life changed. We were used to getting preferential treatment because of his position at work. Now we had to move from a government house to a low-cost area.

Then, in 1989, tragedy struck again. We lost our last born sister to cancer. She was daddy’s girl, they were inseparable so her death hit him hard.

He went into this shell and he was always sad or angry. He would beat us up, at the slightest provocation. This would remain his personality for the years to follow.

Seeing the physical and psychological changes in my dad left mum frustrated. She almost went into depression due to the constant fights and arguments.

It was sad for us all, seeing his condition deteriorate each passing day. Being half Kamba, the witchcraft rumours started circulating. It was a hard time for our family.

LIFESTYLE CHANGE

My dad had always been a stickler for excellence, especially in his appearance. Now here he was dressed in pajamas on top of his favourite Kaunda suits. He was also losing money and accusing us of stealing it.

When I was in Form Four, he moved us from our four-bedroomed maisonette in Uhuru Estate into a mabati house around the corner, saying, ‘Jesus is coming back soon so these material things will not matter anymore.’

The shame of the status change was immense. More people dropped from our circle. Very few would visit.

My mum would have preferred to move us to shags but we had not yet built a home there.

Soon after, dad started selling the car parts. I had also just finished my high school education at the time and my sister was waiting to join Form One.

All of a sudden, dad said that she couldn’t because she was not married yet. My mum had been a stay-at-home mum, which meant that I had to step in and help the family with the basic needs, as well as my younger siblings through school. I had to look for a job at 17 after completing my O’ levels.

SUPPORT GROUP

Dad also started to walk everywhere instead of using public transport, no matter the distance.

I remember him walking from Uthiru, where he lived, to Aga Khan Hospital to visit me…

Read the full story on The Daily Nation

Remembering to Love Those Who Forget – Dementia Stories from Kenya

Dementia Stories

Dementia Stories

Imagine dying because you forgot to breathe. Joel Kasimu was a policeman, an Officer Commanding Police Station (OCS). His wife, Rose Wambui , described him as a patriotic man who lived to serve Kenya, “He was so proud of his job, how he would get up, dress and prepare for work in his uniform,” she explains, lifting her chin to mimic his posture and recalling how the 6-foot-tall man stood akimbo in his uniform, ready to leave home and serve the nation. Having suffered from diabetes, he reluctantly went on early retirement in 1985 on medical grounds at around the age of 55. Mr. Kasimu did not know his exact age. It was the time when you started school once you could touch your left ear with your right hand by passing it over your head.

Read the full article from ByAWoman

0

Stigma adding to dementia burden

“There is a lot of stigma surrounding the disease and most people think that one is bewitched or they have annoyed the gods and they are being punished by being unwell,” said Elizabeth Mutunga, who founded the Alzheimer’s and Dementia Organisation of Kenya (Adok) in memory of her father.

Patients with dementia experience memory loss, personality changes and impaired reasoning. Alzheimer’s is the common type of dementia.

Dr Simon Njuguna, a mental health director at the Health ministry, says the rising numbers of Kenyans with the disease poses double burden to the elderly who are also getting non-communicable ailments such as cancer and diabetes. ‘’Dementia has huge financial, emotional and social cost. It affects the productivity of an individual,’’ he said during the World Alzheimer’s Day two weeks ago. (September 21)

Unfortunately, there are no official statistics on the number of Kenyans suffering from dementia.

Get more information from the Business Daily here