Sign up for our eNews and discover more about what we're up to, the difference we're making, and, most importantly, how you can help.
Dementia Advocate Benny shares the first three chapters from his book Life with Mamay, where he recounts his response to his mother’s dementia diagnosis.
Tagsibol / Spring
The Journey Across the Nullarbor
"Woot! Woot!" the long Indian Pacific train hooted. It was a foggy spring morning at Sydney’s Central station, but already the place was a hive of activity. Early commuters just like me, to-ing and fro-ing, lugging their luggage behind them.
"Boarding now on platform ten for Perth!" the announcer blasted through the speakers.
I hurried along to catch my train, not fully understanding the journey I was to undertake. All I knew was that Mamay had called me a few weeks back, begging me on the phone, "Tongyong! Punta ka na lang dito! Samahan mo na lang ako!" (or “Tongyong! Come and join me here!”)
"Nag-iisa ka na lang dyan sa Sydney, at Ako din naman ... nag-iisa ako dito sa unit ko sa Perth!" (or “Since you are on your own there in Sydney anyway, and I am also alone here at my unit in Perth!”)
I was happy to oblige. I was, after all, nursing a broken heart, and the warm comfort of a mother's love is, for me, the best medicine.
The train ride from Sydney to Perth took three days and two nights aboard a semi-luxurious passenger train. It was a perfect opportunity for me to re-assess my life and mull over the "what if’s" and the "why not’s" on a solitary journey accompanied only by strangers and my own thoughts, as the train passed through the amazing vastness of the Nullarbor.
Barely a year after resettling in Perth, Mamay was diagnosed with vascular dementia. I started writing mini-anecdotes about my day-to-day life with Mamay, at first to keep my mind occupied, since I had to give up my full-time job at Centrelink. I called it, "Life with Mamay”. Later, I added in brackets “The Dementia Carer Chronicle”, as I felt the need to chronicle my experience as a full-time carer.
Why? I wanted to humanise dementia. I wanted people to know that although it is an illness, people who live with it are people just like you and me. I wanted to contribute towards lessening the prejudice people with dementia experience in our society, and raise awareness of this traitor of an illness.
Finally, it is a tribute to all women who have cared for and nurtured a child. But more specifically, it is for my mother Mamay, whose love and faith in God helped serve as her backbone and strength while living with dementia. And so it began...
Tag-Araw / Summer
The Early Warnings of Summer
"Dalawidaw ikaw kon mag-ambahanon,
Yuhum mong balahinon may binalaybay
Duhang larawan mo sa dalamgohanon
Diwata sa bukid kag kataw sabaybay.
Diwata sa talon, bulak nga ilahas
Sa kapalaran nga daw gapasimpalad,
Alibangbang lamang labing makahas,
Makigsuyop sang kayuyom sinang sipad."
Mamay was happily singing one of the Hiligaynon songs she had learned from her own mother, my grandmother, Lola Tinang. The song spoke of waterfalls, blooming flowers and fair maidens. At the same time, she was using her brother’s sewing machine, busy altering my new pants. It was the peak of summer, and Australia Day.
"Mamay, leave that alteration for now. We are going outside to watch the fireworks display at Kings Park!" I announced.
"Going out" was the magic word for her. She stood up from the stool, and smiled gleefully. "Suroy suroy in-taon ang mag-ina!" (or “Mother and son are going out for walkabout!”) she said.
She was in her jolly mood. She loved the fireworks and, of course, going out. She always was a people’s person.
"Yes, we are going to the park up there," I explained to her, pointing with my index finger. "Let's get changed, and please be quick Mamay. The fireworks might start at anytime!"
“Boom! Bang! Boom!” came the loud sounds of the fireworks from the nearby Kings Park. I could smell the sulphuric powder in the air as we approached. The humidity intensified on this particular summer’s night.
"Hurry Mamay!" I looked back behind me, and saw Mamay standing still. She has stopped in the middle of the cobblestoned road. "Oh Mamay, why did you stop?” I asked her. "We have to hurry, or we’ll miss the fireworks altogether!"
She gave me a quizzical look. “Where are we going?”
"To Kings Park. To watch the fireworks!"
“Is that so?” She sounded unconvinced.
"Yes! I told you already!" I explained.
"I see ... and what about Mum? Where is she?”
"You must be tired. Let's just sit down here." I guided her to a nearby wooden bench at the entrance to the huge botanical garden that is Kings Park.
She looked around after being seated. “Where are we, Tongyong?”
"We are here in Kings Park! Look ... more fireworks!" I pointed upwards.
“Lovely! Why, is it New Year already?” she asked.
I looked at her intently, not comprehending what was going on. "Is her hearing going?" I asked myself. "I must take her to see the doctor soon, to get her hearing tested!" I decided. "It’s finished. The fireworks are over now Mamay. Do you want to go home?"
She nodded, still looking confused. She grabbed my left arm, shook it, and asked, “Where is our house?”
My heart skipped a beat. I felt as if a bucketful of ice water was poured down all over me. "Oh dear Lord," I exclaimed out loud, and gave Mamay a hug. "... have mercy on us!"
Tag Lagas / Autumn
The DNR Clause
There was a storm forecast for tonight. Already, the Perth sky at barely five o’clock in the early evening was like the cauldron pot of a witch, eerily brewing dark clouds, slowly creeping and finally engulfing the heavens above.
I ran fast to our building in West Perth from the bus stop, my dark brolly flapping like a drunk bat in the wind, the takeaway Chinese noodles in my other hand swinging wildly.
"Mamay ... I got 'Pansit'!" I called as I closed the door behind me.
The dark lounge area was empty, but a flicker of light from the bathroom inside the room directed me to her. After dropping the dinner on the table, I went to our bathroom and gently knocked at the slightly open door.
"Tongyong?" her feeble voice greeted me.
I gently pushed the door, and replied with a question. "Mamay ... what's wrong?”
“I am doing number two!” she explained sheepishly.
"It's ok, Mamay! No need to be shy with me. I just want to help you get up. OK?”
Mamay had been ‘stuck’ in the toilet for almost one hour. The look on her face was a mixture of shame, pain and desperation. She stretched out her two arms to me, signalling for help. "Tongyong!" was the only word she uttered.
After I helped her freshen up, I prepared her dinner. I had to microwave the noodles as they had gone cold. As I stood by the kitchen, I glanced towards the glass window and saw patches of old newspaper glued sporadically in a childlike manner over the glass. After dinner, I pointed to the strange covering. "Mamay ... why are these glued here?" As I started to peel the newspapers off with a soapy sponge, she stood up from her seat and sprung towards me with a loud voice.
“Don't ... don't remove that Tongyong! They will see us!”
"There is nobody out there Mamay!" I reasoned, but stopped what I was doing to appease her. I noticed she was struggling to regain her composure. Hallucinations can have a powerful effect on people with dementia.
"Alright ... alright, just go back to your bed," I guided her back to her sofa bed. "You want a banana?" I asked her afterwards.
She nodded and said smiling, “Let's share!”