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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

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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

Alzheimer’s Disease an Unknown Thief that “snatches” loved ones.

My name is Elizabeth Kasimu Mutunga.   This is a tribute to my dear Dad who was “stolen” from us by a disease called Alzheimer’s.  My story starts way back to when I was growing up.  My father Joel Mbithuka Kasimu was a police man and he rose through the ranks until he was an Officer Commanding Station (OCS) this means he was the one giving commands as he was in charge.   My father loved his job so much and he had a certain spring to his walk as he took the short walk to the police station with his neatly ironed uniform and his shiny polished shoes.  In our family neatly ironed clothes was a must and oh my you had to see your reflection on the shoes so you could get his approval. My father was one person who was meticulous in how he behaved, dressed and carried himself.  Thus you can imagine this also had to apply to his children.  No whistling aimlessly especially at night, no laughing loudly he would call it ( Kariko laughing) thus we had to be at our best behavior at all times.

At 55 year Dad was asked to retire.  This affected him so much.   He first got diabetes and collapsed at home was rushed to Forces Memorial Hospital.  Later that year he had to move to a life of a Civilian.  This meant that he had to say goodbye to the life that he had known for most of his life.  This was very difficult for him.   Back to the life of a civilian… you could see the sadness in his eyes as he was no longer wearing the uniform that he loved and wore with a lot of pride.  He would keep reminding us about the motto of the police “ Utumishi Kwa wote” we even had a song about it at home haa… For him to try and fit in  the society he looked for jobs that involved ensuring that the security is maintained at all times.  The spark from his eye was diminishing …  Little did we notice at first as we were still young but we started noticing that there were things Dad was doing that was unlike him.  Dad moved us from a four bedroomed maisonnette house to a mabati house round the corner from where we lived.  Remember I said my Dad was meticulous…  this was already a warning sign .  Dad became violent something he was never known for.  All the stories I owned when growing up were bought by Dad and he took time to read me a story each day.  This had all changed he would look for any opportunity to fight us and start a quarrel.   I remember there was a time when I turned 17 years  after  completing my fourth form that he beat me so much and was threatening to kill me as he felt that I was usurping his authority.    By then he had lost his job and I had gone to look for a job to care for the family and to educate my brother and sister.  He beat me so bad that he broke my arm.  He kept asking me who told me I was the one in charge of the house.  This affected my relationship with my Dad a father who had been everything to me when I was growing up.  He was my pride I talked about him with a sparkle.  But now we were turning out to be enemies.  There was a time he was soo irritated with my sister that he locked her up and switched on the gas and  he was about to light up the burners .  He kept yelling at my sister telling her he would kill her as she does not listen to him.  Thank God for my brother who broke the windows which distracted him and he opened the doors and thus prevented a disaster.

He started complaining that he felt that there was something wrong with his head I think this was the onset of Alzheimer’s  disease.   This was around 1992.   He kept saying that he is forgetting things but since he had retired we thought this was normal aging.  As the days continued he started forgetting the days of the week and he would wake up on a Tuesday and state that he was going to church.  Many times we would try and advise him the day of the week and he would get soo agitated there is once Mum tried to mark the calendar for him and I remember him telling Mum that he was not a child infact he stated “ do I look like Leeroy ( this is my son who was 2 years then) for you to mark the calendar for me ?”

As stated earlier he was meticulous in his dressing.  He would put on other clothes on top of the ones he was wearing.  He would forget that he still had clothes on and thus he would assume he has showered and thus he needed to put on a fresh set of clothes.  Trying to tell him otherwise would start a war in the house and by then we were not understanding what was happening to him.

Dad would horde anything and everything.  He loved walking and he would pick handkerchiefs, papers, tissues.  All these things would were stored at a safe place in his drawers.  Attempts to clear the drawers and clear the “mess” would be met with the strongest resistance.  In these drawers he would hide his money too and in the process he would forget where he placed the money and thus he would state that we were stealing from him.  By this time we were now walking on egg shells as anything we did was always wrong and according to him we were always planning to harm him.  He would thus stay locked up in his room and rarely spoke to us anymore.

Stigma is one of the things that makes people not speak about the disease.  Most of the people presenting with this disease sometimes are mistaken to be suffering from a mental disorder.  Thus most of the people will first be taken to a psychiatrist  as their loved ones do not understand what is going on.  What is most painful as the days go by the patients suffer from incontinence and thus they will help themselves wherever they are at the moment and will not remember that one needs to go to the toilet.  Most of the carers will tell you that they have suffered many embarrassing moments.  Thus with time the number of visitors visiting them at home decreases, no phone calls to even check on them.  Being from an African setting others even will find people telling them that they have been bewitched.  It is sad that there is little known about the disease in Kenya.

Repetition of statements was another symptom.  He would meet you and he would say hello and ask you questions.  After five minutes the same way he started the story he would repeat his statement again.  He was a good story teller and thus it took sometime before we noticed this was happening and he would repeat the same stories and since they were hilarious we would laugh and laugh.  With time we realized he was repeating the same story all the time.

Wandering away was another problem.  Dad would loved walking .  Thus a number of times he would ask for directions to come back home.  With time he would go for his walks and return home but when he got to the gate he could not remember this was home so he would stare at the gate and we would wonder what is he thinking .  Later is when we got to understand that he could not remember that he had reached home and all that he needed to do is open the gate and enter… There was a time he got lost in Mombasa and since his long term memory had been wiped out he was using his long term memory , he walked to the police station and stated that he had got lost.  He police asked him what was his name and off course he did not know his name.  The police were so irritated and they must have felt he was being a con .  They chased him away.  Dad slept under the vehicles and the next day was found at Mtwapa walking to Nairobi.  There was also a time when he got onto the ferry and was found at the South Coast collapsed as mentioned earlier he had diabetes and thus his sugars were so low and he was picked up by the beach boys who took him to a good Samaritans house.  She was kind enough to announce that she had an old man who does not seem to know his name if anyone has lost a loved one to get in touch with her.  Thank God for small mercies.

There was a time when he got into a matatu and he was asked to pay Ksh50 and he started causing saying they want to steal from him.  He was again taken to a police station for causing unrest in the matatu .  Unrest??? .  There was a time when he was admitted in hospital and they give him a teabag in his tea.  Dad could not remember what a teabag was and can you believe it he stated eating the teabag…This was soo sad for me I found myself crying …  I kept wondering does the medical fraternity really care for people suffering from this disease.  Thus the importance of creation of awareness amongst the police, doctors, nurses, transport industry and the public at large

 

The most painful bit was when Dad forgot me. Every child has the sense of security and a sense of belonging as long as they can be identified with their family and thus this is one of the things that makes one feel loved .  So you can imagine that you cannot be remembered to the point you are being asked whose child are you ?  This was devastating to me.  Dad would remember some of my siblings but for me it was the opposite. This disturbed me and it affected my self –esteem as I felt that he did not love me that is why he forgot me.  I am glad I had started my counselling psychology training and thus counselling was a must so as to complete the course.  I am glad I had the opportunity to go for several counselling sessions so that I could be able to believe in myself and love myself .

This is when I developed an interest in researching about Alzheimer’s disease.  This was also point when I decided to start a support group to help other carers.  I had seen my mother deteriorating both psychologically and physically.  As a caregiver one tends to forget about caring for themselves and thus all their energies are channeled to the patient.  This is what happened to my mum and I remember taking her to the airport to go and see my sister for a while as this was to serve as a break for her too.  I get a call from my sister and she asks me if I have seen my mother and I am like what do you mean has she not arrived?  She asks me again have you seen your mother at this point I was going nuts and I was like I am not in a mood for jokes could she spill out what she wanted to tell me.  All she did was send a photo of my mother I was shocked at the person I was looking at on the photo.  This was one lady who I saw every other day but she had lost so much weight and I had not realized as we were all coping with the disease in different ways but our main concern was dad.  To date I still have the picture of my dear Mum.   This is one disease that causes sibling rivalry and deterioration of health for all family members and thus there is need to care for each other so as to survive.

One thing my sister said about my Dad was that he loved reading , walking and talking.  Towards the last days Dad lost all these after suffering from two strokes and he was on a wheelchair and you could see the same sadness he had when he was retired.  He would be slumped on the wheel chair quiet all day.  A week before he rested we had a thanksgiving service.  We sang a Kamba hymn that he loved “ ni nthi nzeo kula yulu” “in that summer land up yonder and dad who had not shown any recognition to his surrounding sat up , his eyes lit up and he started moving his fingers.  Music had brought him back ….  Oh it was a sight to behold and as soon as the song was over he went back to the world where no one could reach him ….   I would give anything to get my Daddy back.

It is now 6 years since Dad rested.  He slipped away peacefully on September 16th 2009.  The pain I have been through has been the drive that has made me  to be out and about campaigning and creating awareness on the disease so as  to help others.  I am grateful for a wonderful family my mother Rose, My sisters Liz, Catherine and Damaris and my brothers Joe and Charles for always being there for each other amidst the tough times.  A big thank you to Musyoki who was Dads carer who made sure he was always clean, that Dad never had a bedsore oh he was amazing these are the angels that God sends to ease the burden of Alzheimer’s….My sister Liz  and brother Joe who took care of Dad when the disease was in the most difficult stages.   To close with the words of Rober H. Schuller “Tough times never  last but tough people do “and that is who we are …  We love you and miss you Dad

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