Alzheimer’s is a particularly cruel disease as it robs a person of memories, reason and dignity.
My mother recently turned 76 and I am thankful I was able to wish her well and, more importantly, that she still remembers who I am. For me, it’s a big deal that she remembers this. She was diagnosed with Alzheimer’s disease about 10 years ago, which came on the heels of a major stroke a couple of years earlier.
The stroke and resulting brain haemorrhage changed everything – it robbed my mother of her identity, her personality, her essence. And for a while, it robbed her of me, as she could not remember me at one point.
N Shashi Kala
It took her a few weeks to recover some of her memories, and a few months of rehabilitation before she was well enough to start doing things around the house again. But she was altered. She no longer smiled much, and rarely if ever laughed.
Where she was once the life of the party, she was now withdrawn, speaking rarely, staring idly at the television, and unable to focus on anything, getting ever forgetful. And then, she was diagnosed with Alzheimer’s.
My mother, the kind-hearted matriarch who never let a visitor leave without a full belly, now rarely ventures into the kitchen she had ruled all her life, and has to be coaxed into eating even the bare minimum for sustenance.
Alzheimer’s is a particularly cruel disease as it robs a person of her memories, her reason, and her dignity. For an Alzheimer’s patient, the past is a hazy thing, drifting into focus once in a while before fading like a will-o’-the-wisp.
As the disease progresses, the sufferer is unable to retain new information, or learn how to operate any new equipment or gadget. This can be dangerous in the kitchen, as lit gas stoves are sometimes inadvertently left to burn, and the kettle or pan left to “cook” until the bottom is charred black.
There is also a great tendency to misplace objects, or forget what they are meant for. In order to hide the gaps in the memory, the mind “invents” elaborate lies that cause untold pain to caregivers and those around them, who are accused of “stealing” or worse.
Family members end up pacifying relatives and family friends who are suddenly accused of conspiring against an Alzheimer’s patient in the grip of dementia. My family was forced to cope without a domestic helper due to my mother incessantly accusing the poor maid of elaborate plots to steal her jewellery.
This meant that my father became her sole caregiver (my parents like Johor Baru, and despite my repeated pleading, refuse to move up to Kuala Lumpur where my sister and I live). For the most part, he has done a bang-up job taking care of her. Buying groceries, putting clothes to wash, hanging them to dry and folding them, watering the plants, going out every day to buy food, and running the household.
But it has taken its toll on him. As my mother retreats even further into herself, she lashes out at him in frustration, stubbornly refusing to eat or budge from her living room chair. This leaves my father at wit’s end, to the point he sometimes considers leaving her in a nursing home.
Therein lies the dilemma of caring for your aged parents.
As a daughter, I am loath to consider the nursing home option, especially one in JB. At present, my sister and I try to go down as often as we can to ease the burden on my father, but there is little we can do in a few days’ visit. The option of moving back home to take care of them, though tempting, is not realistic as job prospects in our chosen field are nowhere as good as in Klang Valley.
So what other options are there?
We could arrange for daily nursing visits to the house but at RM20 per hour, for a minimum of eight hours a day, it is certainly costly. But it might be the best option if my mom’s condition deteriorates.
She’s already forgotten how to make a phone call, and is reluctant to leave the house. Sometimes, I catch her picking at the buttons on her maxi dress, as though wondering what they are there for. When I call home, it now takes her a while to place my voice, and she’s apt to forget our conversation as soon as it is over. But at least she remembers me still.
For that, at least, I am thankful. A year down the line, she may no longer remember me. But she’s my mother, and I will remember for both of us.