Friday March 1, 2013
A long journey to memory loss
By WONG SAI WAN
Alzheimer’s destroys a person but leaves behind a perfectly healthy shell of a body.
THE family had suspected it for a while now but no doctor wanted to confirm that my 55-year-old sister, Lai Kwan, was suffering from Alzheimer’s disease.
Finally, the Neurology Clinic at the University Malaya Medical Centre (UMMC) confirmed this on Tuesday.
The doctor did not put it bluntly. Instead, he simply told us: “Since we found nothing in all the tests, we have decided to treat her for Alzheimer’s.”
This is the tale of my sister’s journey to discovery that she is slowly losing her mind, with every doctor she has seen being reluctant to diagnose her with the incurable disease.
A neurologist in a private hospital in Seremban who performed a Magnetic Resonance Imaging (MRI) on her three years ago was equally dismissive.
“Her brain is shrinking – she’s got brain atrophy. We have no facilities to treat her here. I recommend you take her to UMMC where they have a Neurology Clinic,” she said.
Yes, UMMC did have the experts but each time we went, a different doctor attended to her, and each time we had to repeat Lai Kwan’s five-year-long history.
On top of that, the MRI performed on her by UMMC a week ago went missing although a doctor managed to have a look at it before the scan disappeared.
Apparently, this is not something new at UMMC.
The best hospital in the country has managed to gather great staff and competent experts but somehow, the infrastructure and system do not seem to match.
When the doctor at the Seremban hospital first saw her four years ago, she was referred to a psychiatrist who refused to accept that my sister had a medical condition.
Instead, he referred her to a memory clinic because we complained that she had very poor short-term memory. When she reported to the clinic, she was turned away because the staff considered her too young to be afflicted with the disease at 50.
Trying to get someone to confirm what was wrong with her was almost impossible. It came to a stage when we too started using the terminology “Alzheimer-like symptoms” for her condition.
Last year, UMMC neurologists admitted Lai Kwan for a week for observation. We were given “some hope” that her condition might be caused by a tumour somewhere in her body, possibly the brain.
Cruel as it may sound, I had hoped that they would find the tumour or cancer so we could treat and fight the disease, but all tests came back negative.
So our only confirmation comes from the prescription of the medication Aricept by the young medical officer at the UMMC neurology clinic. The medication just slows down the symptoms but does not treat the disease.
However, my sister’s suffering has been a painful journey for her and the rest of the family.
She was one of the favourite teachers among her students in her school and was even chosen as a lead science teacher.
She was a very active person and was always organising field trips for her friends, colleagues as well as her students. I have to admit Lai Kwan was easily the smartest of the five of us in the Wong family.
She is single and we had thought she would look after our 85-year-old mother in her twilight years. The role is now reversed as my mother is currently the primary caregiver for her fading daughter.
Once a clever, witty and happy person, my sister is now unable to look after herself. She can no longer drive and numbers do not mean anything to her. Even a simple “1+1” is alien to her.
She can no longer go shopping because money is no longer a concept she comprehends.
Besides, she can no longer remember what she is supposed to buy.
On Tuesday, she accidentally locked herself in the UMMC’s toilet and I had to break into the women’s toilet to get her out. The stares I got as we left the toilet were embarrassing but I am sure this is something I have to endure over the next few years.
I must learn to laugh at them.
She cannot tell the time but she still has wonderfully green fingers.All plants seem to flourish under her care. Physically, she seems normal and even healthy until you engage her in conversation.
Ask her what she had for breakfast at mid-morning and she will struggle to give you an answer.
Ask her when her birthday is and she will giggle and reply, “Sorry, I forgot.”
If the question is even simpler and she is still unable to answer, she will break out in laughter and again say, “Sorry, I forgot.”
Even as she smiles, I can see the confusion in her eyes as to why she did not know the answer to the simplest of queries.
Known as “The Long Goodbye” as the illness often stretches over 10 to 20 years, my heart aches to see her like this.
I pondered for days before writing this article. I am not sure if the normal Lai Kwan would appreciate my sharing of her condition.
My simple message for you, Lai Kwan, is that we are going to get angry at each other many times in the years to come but know that tempered in all that hostility is lots of love.
It is estimated that there are 18 million people in the world suffering from Alzheimer’s and this would increase to 34 million by 2020. In Malaysia, it is estimated that there are currently about 50,000 people suffering from the disease.
> Executive editor Wong Sai Wan is afraid of the journey that Lai Kwan faces but promises to be there for her.