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.