Memories fade away, one’s attention span shortens, language skills fragment as do judgement and insight. There’s the failure to recognise people, disorientation, mood swings, hallucinations, delusions, and the gradual loss of ability to perform all tasks of daily living. These symptoms have a name. Dementia.
Dementia is on the rise in Asia, placing a huge burden on a growing army of carers, who are often family members. Alzheimer’s disease is the most common cause of dementia, but it’s often used as an umbrella term for several conditions which cause dementia. Most of these conditions are currently incurable, and cause progressive, irreversible brain damage.
More often than not, people aren’t able to get the care they need. Mental and neurological disorders impose a huge range of costs on individuals, families, employers, and society as a whole, from the cost of care to the cost of lost productivity.
This is the story of how one family in Asia is living with dementia. It’s a tale of the best kind of love possible – a love that endures.
“What is your name, Mummy?”
“Ce-line,” a frail woman of indeterminate age replies, dragging out each syllable.
“How old are you?” her daughter asks with a singsong lilt. Celine Fernandez pauses. The lines that frame her eyes darken into a frown. She remains silent.
Last year, Celine managed to get all the way to the end of ‘Celine Stephen Fernandez’. Now, her daughter is happy with ‘Celine’.
Joyce Fernandez looks into the eyes of her mother, the black pinpoints encircled by the deepest brown, and into the unflinching, unfathomable gaze. Dementia has hollowed out emotion from her mother’s eyes. Joyce wonders what her mother is thinking. If only I can read her mind.
She waits till there is sunshine in her mother’s eyes. Only then will she know everything is alright.
When Are You Coming Home?
It began over a decade ago. Celine kept forgetting when her daughter was or wasn’t coming home for dinner.
Joyce resorted to pasting yellow post-it reminders on the refrigerator for everything, but even that didn’t help. Over the next four years, things got worse.
Joyce would wake up in the middle of the night to find her mother ripping up the blanket with her teeth, an unflinching stare drilling into the distance. Celine would mend the torn blanket the next morning and deny the incident.
Joyce could no longer have conversations with her mother because, halfway through one, Celine would abruptly get up and leave. Joyce stopped working full-time to care for her mother.
The doctor, who saw Celine for her quarterly medical check-ups, listened as Joyce poured out her worries. What is happening to my mother? What is wrong with her? My mother is not like my mother. The doctor dismissed her. “It’s just old age. I will look into it again the next appointment.” But Joyce knew it wasn’t just old age.
She dragged her protesting mother to another doctor to get a second opinion and was referred to a specialist. During the next two weeks, Celine had to answer a barrage of questions (“Can you count backward from ten? Can you identify this animal?”) and undergo a battery of tests.
Two days before Christmas 2003, Celine was diagnosed with dementia. “Oh,” Celine said, looking at her doctor. She didn’t know what dementia was. Six months later, the diagnosis was confirmed as Alzheimer’s disease. Forgetting things was just part of the problem.
Joyce felt a sense of relief and quiet resignation. “After what I have been through, nothing can hit me. Whatever comes my way, I will handle it. A job and money, I can always find. I only have one mother.”
Recording Her Story
After Celine was diagnosed with dementia, her doctor asked Joyce to keep a record of her mother’s behaviour, which she did – on scraps of paper, hastily typed phone messages, notebooks, diaries, and, when none of these were available, in memory.
Mum called after daily Mass ended.
“I don’t know how to go home.”
“Which church are you at, Mum?” She was at a church 15 minutes away from home.
“Stay there, Mum. I will pick you up.”
What’s next? I still want Mum to be independent. I don’t believe in stifling her freedom, but what if I lose her?
Joyce had given Celine a copy of her identity card when she was first diagnosed and at the back, Joyce had written her phone number.
“Mass ends at 6.30, be back by 7,” I tell Mum.
“But there are so many things going on . . . this might be my last year.”
“I’m sorry, Mum. It’s for your own good.”
I lost Mum today. We were out the whole afternoon window-shopping and I wanted to visit the bookstore just before going home.
“Can I wait for you outside?” Mum pleads.
I said yes but I kept an eye on her. Only once did my eyes leave her – when I searched for money to pay the cashier. When I lifted my head, she had disappeared. Oh, good Lord.
I was so tired, and all I wanted to do was go home and rest. Did she turn left and go down the stairs? Or turn right into the row of shops? Where could she be?
An hour had passed since Joyce lost her mother and she still couldn’t find her. Joyce was frantic. She walked to the bus station nearby, where they usually took a bus home. Celine was walking casually towards the bus berth, like nothing had happened.
After this incident, I enforced Mum’s 7 pm curfew strictly. Wherever she went, I would be right beside her. Like a watchdog.
A week later, Joyce brought her mother to a mall much further from their house. She brought Celine to the bus stop.
“Mum, do you know how to go home?” Celine looks at the array of bus numbers. She looks left and right, top to bottom, and shakes her head. “I don’t know,” she says.
May 6. Mum fell and fractured her left pelvis. Her femoral head was surgically removed and a 40 mm prosthetic stem, inserted. After the operation her memory deteriorates further.
When Mum was first placed on memory medication in 2004, she was prescribed 1.5 mg of rivastigmine once a day. The dosage was later doubled to 3 mg. Late last year, it was replaced with 10 mg of memantine, and after the operation, increased to twice a day.
After the surgery, Joyce knew that she wouldn’t be able to manage on her own. Up to that point, her brother had been the sole breadwinner, but the bills were piling up and it was more than he could handle. In order to cope, Joyce put Celine in daycare and looked for part-time work.