Before We Forget

2009

I cannot describe how depressed I am. A week before we were to leave for India, Mum was warded. Her sugar levels and blood pressure hit the roof. I had everything packed – a month’s supply of diapers, clothing, everything. The tickets and visas were ready.

I really need to get away. For the past few years, my life has been Work, Home. Mum. Work. Home. Mum. The last time I remember watching a play was in 2000. I haven’t seen one since Mum was diagnosed.

I wanted to go to India because it was my cousin’s wedding and I would be seeing people I hadn’t seen in decades. And at least in India, our relatives can help look after Mum.

I asked the doctor if we could still go after Mum was discharged. He said no. The air pressure might affect her blood pressure, and if anything goes wrong, the Indian doctors won’t have her records.

OK, I thought.

Those days, I wandered around aimlessly. I went to the hospital. I went through the motions. But my mind just wasn’t there.

In August, Mum had H1N1 (swine flu). The 38-degree fever didn’t subside for nearly a week. I didn’t know where she caught it.

In September, I found Mum throwing up. There was fluid from every orifice in her face: tears in her eyes, mucus running from her nose, and her non-stop retching. She developed pneumonia.

Even though this was Mum’s fourth time in the hospital in a year, I knew she would pull through. Mum’s a tough woman. She fights hard. Mum’s a fighter.

2010

November 15. Celine is back in hospital. Joyce noticed that for two days Celine was leaning to her left and her movements were sluggish. She dozed off halfway through lunch. Her eyes dimmed. Now, lying in bed with an IV drip in her arm, Celine seems calm.

“Lightning,” she says in Malayalam, as light flickered across the sky as if heaven has a whimsical hand on a switch.

On. Off. On. Off.

She looks out of the row of windows on her left. Lightning is the first word she’s uttered without prompting in a long while. Uttered in her mother tongue – a language she has not used in decades.

It’s a stroke, doctors tell Joyce. She’s worried. The stroke might quicken the decline of her mother’s memory and motor function. Already, when she rubs moisturising cream on Celine’s legs, Celine doesn’t participate. Lying on her side, she does not move her leg so that Joyce can reach the one below it. She lies there, motionless, until Joyce moves it for her.

When I went home that night, Mum unexpectedly lifted her hand in a wave. It’s her ‘Queen’s wave’.

“Good night, sleep tight, wake up in the morning,” I sing. Mum mouths the last few words with me. She’s going to be fine.

The next day, the doctor-in-charge tries to put a feeding tube up Celine’s nose and down her oesophagus. Her eyes widen and she stiffens in terror.

We need to do this, the doctor tells Joyce. Joyce has always fed her mother at home, but the nurses cannot take half an hour to feed her at each meal. “Besides,” he tells her, “Celine had pneumonia once. We cannot risk her contracting it again in her weakened state. Besides, it is only temporary.”

“Temporary? Is it only temporary?” Joyce asks the doctor. She is worried her mother may forget how to eat.

“It should be. We will see.”

So like how she explained to Celine why she needed to wear diapers when her control over her bowels started to weaken, Joyce takes her mum’s hand and slowly tells her why the hospital needs to put a tube up her nose. Joyce thinks Celine understands, but her mother says nothing. She has said nothing since.

2011

Celine is discharged on January 7, 2011. Two days later, she yanks her feeding tube out. She is quickly rushed to the A & E department where they reinsert the feeding tube.

A week later, Joyce draws black fluid from the feeding tube. It’s likely the blood thinners that are affecting Celine’s stomach lining, the doctors say. But that’s not the problem.

Celine has 30 billion white blood cells in each litre of blood, three times the normal amount. Her organs are failing. Celine Fernandez might not live much longer.

Care and Comfort

“Hellooo, Mummy!” Joyce greets her mother with gusto.

Celine’s blink is barely perceptible. Her eyelids droop; the glimmer in her eye is absent. A yellow crust of dried saliva smothers her lips.

When Celine was diagnosed, Joyce did not think about how much longer her mother had.

“I don’t dwell on such things.”

All Joyce wants to do is to provide the best care possible to keep her mother comfortble.

Going Home

A day after her 85th birthday, Celine Fernandez goes home. It’s been a 62-day hospital stay, her longest yet.

Joyce knows that it is not over. “In the past, whenever I had any issues, whether about work or friends, I would sit down and talk to her and she was there to listen. Now she doesn’t say anything. Mum and I always used to have good conversations but not anymore. I have to think everything through by myself and have a conversation with myself and try to put things into perspective.”

“I lost a friend. I didn’t lose a mother. I lost a friend. It hurts. It hurts a lot.”

Sunshine in Her Eyes

In the kitchen, Joyce cuts and washes vegetables for lunch. She peers out into the living room. Celine is exactly where Joyce left her, watching television, fingers wandering blindly over domino tiles.

Joyce dries her hands and walks to her mum. “Hello, are you OK?” She asks cheerfully. “Tooosh,” she says as she touches foreheads with Celine – their secret greeting gesture.

“You OK? Yes or no? Yes? Watch TV? Oh, you made your dominos! You’re so smart!”

Her theatrical streak helps her make such monologues with Celine. “Up, up, up, up. Down, down, down, down, down,” she recites as she guides Celine in lifting paper poles. Celine coughs and sneezes. She sneezes more violently a second time, splattering Joyce’s shirt with saliva and mucus.

“It’s OK, it’s OK,” Joyce reassures her mother. She laughs. And for a brief moment, Celine’s eyes are full of sunshine.

Joyce and Celine Fernandez are part of Before We Forget, a youth-led initiative to foster conversations about dementia. Watch the documentary and share your stories at www.beforeweforget.org

Read also:
10 Signs of Dementia and to care for someone with Dementia