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 16^th 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

I was affected by Alzheimer’s Disease and that is why I talk about my experience so I can help other people affected by the disease. My father was affected by the disease and for a long time I did not understand what the problem was.  My dad was very loving gentleman…he took time to read stories for us as his children .. such as Chicken Licken,  the Elves and the shoemaker, Snow white and seven dwarfs…  It is because of his love for books that I got an award in High School as the best in English subject..  I remember him standing proud and tall next to me  together with my mum as I received my award in form 1.

At 17 years one is at the prime of their age and to have responsibilities of ensuring school fees is paid, there is food in the house and there is rent can be a tall order.  Initally I was very angry for very long as I felt life was unfair…  I felt that I should have been enjoying my life and not having to struggle to make ends meet.

Today when I look back to the years that looked so dark little did I know that I was being prepared for who I would be today… In January this year I lost my job.  I was given a redundancy letter this shocked me as I was lost as I wondered which way forward .  After the shock I decided to pick my self up  and start offering volunteer counselling services at Faraja Cancer Centre..  While I was there I decided to continue  creating awareness on Alzheimer’s disease…  yes I lost my Job but I found my passion ….  the resilience of when I was 17 years has borne fruits

I have been speaking to children who have been affected by Alzheimer’s disease . They may be children of a loved one or they may be grandchildren.

The young people need to talk about their feelings as changes occur. These feelings may include:

…

As I create  awareness, I meet with lots of people and they tell me lots of things.  The other day I met with someone who asked what I was doing and I mentioned I am creating awareness about a disease called Alzheimer’s.  She looks at me and tells me ‘ my dear that disease is not in Kenya… that is a disease for the Western world’ .  Her sentiments were valid…  The first time I was told my father has Alzheimer’s disease I thought the same too.  The other day was in a church creating awareness and the same sentiments were repeated.

I need to inform my fellow Kenyans the disease is in Kenya.  Most of us do not understand what we are dealing with and truth be told by the time we seek help we have been frustrated, angry and at the point of despair.  The difference between us and the Western world is that there is a lot of awareness on the disease and when someone notices there is something wrong with their memory they will seek help immediately.  This is one of the reasons that makes me wake up each morning and go about talking to people and creating awareness.  Once there is awareness , there will be less stigma and we will have a community that is friendly to Alzheimer’s and Dementia in Kenya .

Every day I meet families that have been affected by the disease and when you invite them for the support group and they realise they are not alone..  this knowledge gives them hope to move on.. I long for the day these families will get help from the Government as the people who are usually affected are usually the bread winners of the family and thus the family does not have a source of income.  As they are still grappling with this devastating disease the primary caregiver will be a family member and thus there is no one able to go out and fend for the family thus most of them go through a financial crisis.

Lets keep talking create awareness, reduce stigma and to have a friendly dementia community…

Each day as I create awareness there are new lessons to learn. Yesterday I learnt about the power of sharing… Many times we think we are the only ones going through a difficult moment until we start sharing then we realise …wow there is someone else going through a greater challenge than we are and this teaches us to be grateful .

Sharing also helps us realise that we are not alone there are others we can lean on…. A shoulder t…o cry on moves you from a desperate situation to a position of ‘I can make it’…. What changed your perception? the power of sharing …..

Elizabeth Kasimu Mutunga’s Story

Alzheimer’s patients have issues with memory loss, thinking, recognition, language, planning and their personality deteriorates with time

Elizabeth Mutunga is one of the caregivers who was affected by the disease. She was among the initial group that started the support group. In 1992 after she had completed form four , the family realized that there was something wrong with our Dad. Dad had reached 65 years and he was sent on retirement. This is when we noticed there was something wrong.

By this time I was just 17 years and she had to go and fend for her family as her father was not on employment. I had to ensure that my siblings went to high school being the first born. My immediate follower was in form 2 and the last born sister was joining form one. By then Dad was suffering from Memory loss, had problems with planning and thinking difficulties. Therefore, trying to inform him that the last born needed to go to school did not make sense to him. As a family we did not understand that he was unwell as we had not heard of Alzheimer’s Disease before.

We tried to involve all the people we could namely:- relatives, friends, the church. Dad would convince them when they came to speak to him and inform him of what we had told them, he would counter our accusations and inform them how bad we were and they would believe him. He would tell them how we were disrespectful children. Since no one understood what we were going through we were so mad with all the people who would take sides with him.

When the family was informed about the disease I started looking for a support group as would be the norm when you are informed that your loved one has been diagnosed with a terminal disease. There were not groups on the net. This is when she realized that there was no support group and she started reaching out to people who would be of assistance to her to set up one

I have realised the power of a support group. Though I did not join one I started one …. There are times things happen to you so you can help others … I am glad now I am able to reach others to give them hope

The other day as I was going around speaking to caregivers who have loved ones affected by Alzheimer’s disease I posed a question … Do your neighbours know what your loved one is suffering from?, the church congregation, all family members? and the answer to all the questions was NO. So I asked why not… the response I got was that it is difficult to explain what our loved ones are suffering from and also we already have been labelled as a family that has someone who does not have a stable mind. In Kenya it is know that mental diseases are “most feared” and thus most families are hiding their loved ones either literally in their homes or by not giving information to people around them