Sunday, May 13, 2012

Dementia: a personal experience

Mum and i, six months before her death

By Meluse Kapatamoyo

Call it last-born charm, I had a way with my mother. I knew exactly how to turn her darkness into light. In her eyes, even in my late 20s, I was always her baby girl, her Mukala (last born), as she loved to call me. She loved me and I knew it! But all that changed in just one morning.

I had spent the whole day with her, laughing and reminiscing about my late dad. I insisted on giving her a manicure and pedicure and although I managed to convince her to allow me paint her nails, she said dad would not have approved. It was the first and only time that my mother ever had her nails painted. As I left that evening, I felt blessed to have her.

However, that was my last beautiful memory of the two of us together. The next morning, my sister and I woke up to a call that mum was acting strange and had been taken to hospital. When I got there, I found her sleeping but as soon as she opened her eyes, I immediately knew that something was seriously wrong.

There was no glow in her eyes and she did not look at me as she always did. In fact, she looked at me like some stranger, someone she had never seen before.
She had woken up that morning at 05:00 hours and had started packing, not saying a word. Even when she was eventually made to calm down, she did not speak and refused to eat.

As much as I hoped her condition would improve, it did not. Each day that came, it got worse and I saw the woman that gave birth to me disappear right before my eyes.

My family and I took turns in caring for her and one day, while in my care and after not having heard her voice for days, she looked at me inquisitively and asked, “Who are you”?  I felt like someone had gotten a knife and stabbed me straight in my heart. As tears rolled down my face, she added, “I think you are Joshua’s daughter”.
She was right. I took comfort in the fact that she still remembered my father’s name.

A few days later doctors had a diagnosis. Mum was suffering from dementia, a syndrome caused by a variety of brain illnesses that affect memory, thinking, behaviour and ability to perform everyday activities. Alzheimer’s disease is the most common cause of dementia and is said to contribute up to 70 percent cases.

That was not the bad news. The worst was that the condition had no cure. Up until that moment, I had never heard of dementia. My first instinct was to go home and Google the disease but I was too afraid to find out what ‘no cure’ meant for my mother. I choose to do what I thought I could handle at the time. I lived in denial and prayed that the doctors were wrong.

In the two months that followed, my mother went from being a woman to being a child. She mumbled words but never really spoke and continued to refuse to eat. Eventually, we were left with no choice but to feed her through a tube inserted in her nose. She couldn’t walk and had to be bathed.

On October, 26, 2010, three months later, mum died and we were left to deal with the after effects of the disease. I think my siblings will agree that most of it
has been emotional. Looking back, the signs of dementia were there but we all thought that at 71 years old, it was old age catching up with her.

But the World Health Organisation (WHO) says although dementia mainly affects older people, it is not a normal part of ageing.

That said, dementia, still remains one of the major causes of disability and dependency among older people worldwide affecting 35.6 million, with 7.7 new cases recorded each year. This number is expected to double by 2030 to reach 65.7 million and more than triple by 2050 to a staggering 115. 4 million.

And like in my mother’s case, lack of early diagnosis remains a major problem. Unfortunately only eight countries worldwide currently have national programmes in place to address dementia.

A new report titled Dementia: a public health priority, published by the WHO and Alzheimer's Disease International, recommends that programmes focus on improving early diagnosis, raising public awareness about the disease and reducing stigma and providing better care and more support to caregivers.

“We need to increase our capacity to detect dementia early and to provide the necessary health and social care. Much can be done to decrease the burden of dementia," says Dr Oleg Chestnov, assistant director-general, Noncommunicable Diseases and Mental Health at WHO.

 "Health-care workers are often not adequately trained to recognize dementia."

The report further points to a general lack of information and understanding about dementia, which has led to an increase in stigma and also delays in seeking diagnosis, health assistance and social support. This has contributed to the social isolation of both the person with dementia and their caregivers.

"Public awareness about dementia, its symptoms, the importance of getting a diagnosis, and the help available for those with the condition is very limited. It is now vital to tackle the poor levels
of public awareness and understanding, and to drastically reduce the stigma associated with dementia," says Marc Wortmann, executive director, Alzheimer’s disease International.

Most care-giving is provided by informal caregivers-spouses, adult children, other family members and friends.

The report notes that people who care for a person with dementia are themselves particularly prone to mental disorders, such as depression and anxiety, and are often in poor physical health themselves.

Many caregivers also suffer economically as they may be forced to stop working, cut back on work, or take a less demanding job to care for a family member with dementia.

During my mother’s illness, the entire family got involved in her care. Desperate to jog her memory, we had some aunties come to live with us so she could be around her peers. Unfortunately, that did not help. Eventually, a few weeks before her passing, a care giver was hired to help nurse her.

According to WHO, early stages of dementia include forgetfulness, losing track of the time and becoming lost in familiar places.

The late stage of dementia is one of near total dependence and inactivity. They include becoming unaware of the time and place, having difficulty recognizing relatives and friends and having an increasing need for assisted self-care, having difficulty walking and also experiencing behaviour changes that may escalate and include aggression.

If it all comes down to it, the one thing that you can offer a patient with dementia is lots of love and patience. As for you, the caregiver, you will need a good support system from family and friends, as the situation can be emotionally and physically draining.



Anonymous said...


This is a very touching and inspiring story at the same time. It takes a lot to share your own pain to help others and its such a blessing. I just want to add that I dont agree with you when you say your mother's love for you changed - even if she could not remember you, a mother never forgets her child; it was the outer illness only,in her heart however, you can rest be assured she still loved and still loves her mukala. Nothing ever changes that. Not a mothers love.
I have a former workmate who had a similar experience and it calls to mind just how easily we think its over and done with after the burial- your story reminds me that the suffering does go on for the caregivers in terms of adjusting. Thank you for your story.....Silvia Chimpampwe.

Anonymous said...

I know such a story inspires many of those people who live and thrive in denial like you were in the first place. I have lived with very old folks in my own home and I know what it means now and I wish I could have done better than thinking Ambuya is stubborn or Ambuya is difficult or Ambuya this and Ambuya that. After reading your article and indeed seeing the research you have done using the already available materials with WHO the organization that uses public money to operate, leaves me with three observations in my thinking:

1. WHO lives a life of luxury at the expense of the members states by not doing enough to educate people on non- communicable diseases but affecting a lot of people in the ranges of 35 million. This is not a small number but why have they continued not to do enough to sensitize people in the countries they operate in?
2. Besides the WHO thriving and country trotting in their posh vehicles and elaborate compounds with so called MOSS compliant buildings, where they spend millions to construct, need to do a lot through the Ministry of Health ever work-shopping executives flying all over the country and the world talking nothing but allowances at the expense of such important subject just to let people know what is going on and each one of us would be able to know how to handle such ailments. I know of colleagues whose parent/s have had such type of ailments and their spouses started neglecting such people and have died very miserable death.
3. Our Media should take up the mantle and augment where the two big institutions fail. It is not only politics that sells such type of articles could make you guys in the print and electronic and other medias a fortune if you brought to fold such articles.

Meluse this is a master piece and I am very grateful that you have brought out a personal experience in order to educate the masses. To you all folks out there, this is must read article.\ FZN

Bruce Chooma said...

Dear Meluse,

This is a great piece of writing. It is always warm and refreshing to read such insightful articles unlike what the mainstream media is feeding us on. Thanks for sharing your experience on such an issue that has gone without the attention it deserves.

I am wondering if there is any non-state actor in Zambia who is working to draw attention to the issue of ageeing as a public health concern? I know Cheshire is into Community Based Rehabilitation but clearly on this one its an indictment on our government and indeed WHO to prove their relevance.

Thanks once again and stayblessed

Anonymous said...

Very touching ... lost my mother due to cancer and I know that she did not recognise me during the last few long, long days ........ but this one good way of working through grief ....... Hugs


Anonymous said...

Meluse, this is an amazing piece of writing.If we could have more journalists especially those who report on health matters write on issues such as this, this nation will be well informed.
Here in Zambia, when one talks about health issues, they start and end with HIV/ AIDS and to some extent Malaria. But this is very enlightening. It is a very touching story but believe me, before I read this I knew very little or nothing about Dementia.
I would come across this 'word' but would not bother to find out what it was exactly.
Much as it was difficult for you to share your personal experience, you have enlightened more people than you can ever imagine.
I have learnt a lot from this article especially on the early detection, symptoms and the like and how to care and support for those who might have the disease.
But at the end of it all, I agree with you that public awareness should be the first line of dealing with this. It is bad enough that there is no cure but just like in many other incurable diseases we have to live with, caring for people in such situations is the best we can do. Through awareness like the publication of such pieces of work will also play a very big and important role in as far as dealing with stigma is concerned because believe it or not people tend to attach stigma to any disease that affects the brain.
Keep up the good work and this is a challenge to all those in mainstream media, please let us report on such matters-Maluba Kaindu-Jere

Anonymous said...

Hey Meluse,

This is truly heart-touching. I must confess, this is the first time I am learning of this rare condition. I have come across many elderly people with difficulties in memory, walking, speech....but all that came to mind (like you have pointed oiut in this article) is the same old song of old age. Your article provides an opportunity for some of us to understand the condition better. Having 'lived' with it yourself, I sense the need for us to take responsibility and create awareness among the many 'ígnorant' peole (including myself). I say this because you have already shown the way.....this article!!


Anonymous said...

sissy Excellent piece indeed from the heart of a writer gifted through her writing to bring peace and hope to all who are willing to read.....surely this is certainly by no doubts a master piece......MHSRIP - Kyapa

Isabella Mukanda-Shamambo said...

Beautiful article Meluse. Alzheimers is a horrible condition to deal with as a family and indeed it must even be harder in a parent one is close to. I am sorry for your loss but thankful that you have taken time to share and educate others about it. Thank you for writing once again.

Meluse Kapatamoyo said...


Thank you. I agree with you, it is a terrible condition. That is why i think we need more awareness on the condition, not only how to take care of the patient but also how we the caregivers can cope with it. It's tough on both parties. I would recommend perhaps even starting a support group.

Meluse Kapatamoyo said...

Thanks you.

Meluse Kapatamoyo said...

Will try not to let the awareness end here. Hope we can join hands.

Meluse Kapatamoyo said...

Bruce,i intend to find out. Thanks for the support.

Meluse Kapatamoyo said...

Not knowing who are children were was the worst thing that happened during Mum's illness and i think she struggled so much to remember. I could see it on her face daily. You have been there and know what it's like it...for me it has been a learning experience. I now understand a little about Dementia and the diseases associated with it.
Thank you for sharing too...

Meluse Kapatamoyo said...

FZN,I can only this;you have given me a challenge which i intend to execute.
Thanks for the insight.

Anonymous said...

Hi Meluse,
This is a touching story that has taken me way back. 12 years ago my grandma underwent dementia , I was still in college and all my relatives did in Nsokolo village on Mbala was to sprinkle holy water on her because they thought she had been bewitched. Many are time such ailments are easily overlooked in African society, as Journalists we have a lot of work to do to educate the masses.
Keep up with the good work

Meluse Kapatamoyo said...

Firstly,thank you for sharing your story. You are right, it is our duty to educate people and of course ourselves about such conditions. There is a lot to learn, information is widely available but we(journalists)often think such stories are not news worthy. I mean compared to a political story, an article on Dementia would not make the grade. We have a lot of work to do.

Meluse Kapatamoyo said...

Sil, it certainly has taken me a while to adjust and come to terms with everything that we as a family went through. We all deal with grief differently, some get over it quicker than others. Maybe others have better coping mechanisms. After i heard that my sisters best friends mum has also been diagnosed with Dementia, i realised how common it has become or perhaps has been, we just didn't want to talk about it. I feel It's important that we share experiences especially those related to our health.

Mutimba Mazwi said...

I think for some illnesses, awareness is key. Some sections of our society have assumed certain illness are associated with certain peoples in society.
Which brings me to dementia: out of 10, maybe only one person would have an idea what it is in a street interview.
Thanks for the story:-)

Meluse Kapatamoyo said...

Awareness, awareness, that is key Mutimba! As a country we need a lot of education on Dementia. We have to bring an end to the stigma that surround this condition.

Anonymous said...

Educative, moving, inspiring and touching. May Daddy God keep inspiring you and your pen to make a difference healthwise in peoples (our) lives. Thanx Pokeyourmind for sharing your personal aspect.