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Dementia claimed my dad as I helplessly watched him

Saturday September 28 2019

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 

KAREN  MURIUKI
By KAREN MURIUKI
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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.

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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 when I gave birth to my son in 2003. Then, he started forgetting or completely losing his way.

In 2007 the diagnosis showed that he had dementia. I was relieved. Finally, we understood what afflicted him. But the sad bit was when we learnt that dementia has no cure.

There was a lot of confusion and sadness, especially when we read more on how his situation would worsen as days went by.

Fear was also rife. I wondered why there was no support for dementia, just like cancer. I met a few families who had been affected by the condition and we formed a support group.

In the next year, my dad suffered two strokes which left him completely immobilised. All we could do was to give him the love, care, and comfort he greatly needed. Caregiving is expensive.

EDUCATION

The last two strokes meant that dad needed a gas tank to breathe. In 2009, my dad breathed his last. We had taken in a lot as a family.

I needed a break after his death. I was already a wife and a mother of two. I quit the support group, which by then had become an association.

I put my energies in pursuing a degree in Counselling Psychology and a Master's in Human Resources.

I was driving home in 2013 when I got a call from someone whose sister had Alzheimer's and they needed my advice.

They said, ‘My sister was recently diagnosed with Alzheimer's and I don't know the way forward. I need your help.'

Confused, I told them I would call them back. I received five similar phone calls after that. I remember being angry at God because I had told him that I wanted nothing to do with the disease.

‘Why God? Why?' I cried. I returned the calls. We met and agreed that we will continue meeting until when we didn't feel the need to.

We have met at KICC every third Saturday of the month to date. We are now an NGO who create awareness, hold forums, organise for walks, give training to medical personnel and counselling sessions to families.

AWARENESS

I am currently the chief executive officer of Alzheimer's and Dementia Organisation of Kenya, an NGO.

We have also partnered with the Ministry of Health to create a dementia plan, which is a requirement for all countries by the World Health Organisation.

The main challenge we face is limited funding. It's frustrating for me to see other families go through what my family did.

It's also sad seeing that Alzheimer's not taken seriously. I want to start a home where caregivers can bring in their loved ones so they can take a much-needed break.

The greatest joy from my job is seeing a family relieved (even a little) from the support of our organisation."

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