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My father's keeper: A daughter's account caring for dad with dementia

"I HAVE a daughter… she lives in Doha," the old man suddenly speaks up. It was right after his bath, and Shamayne was gently rubbing lotion on his skin. Her breath catches a little as she murmurs quietly in response: "Oh, does she?"

The morning ritual continues as she gently slips his shirt over his shoulder. "Do you know who I am?" she asks him gently.

Like all dementia sufferers, he has moments of lucidity but when the cloudiness hits, he's not sure who he is or who she is. He grows quiet. "You look very familiar lah!" he finally replies. And she thinks she sees a flicker of recognition in his eyes. But she can't say for sure.

"Do you know my name?" she asks again. "Haiyaa! Forgottenlah!" he exclaims. "My name is Shamayne!" she continues. "Oh! My daughter's name is also Shamayne!" he says excitedly.

"I used to think that if my dad no longer recognised me, I'd be devastated. But weirdly, I was not. Or not as much as I thought I'd be — or should be. And I'm not sure why," she tells me later.

The most important thing isn't whether he recognises her, she says. "It's that he feels safe with me, even if he doesn't know I'm his daughter," she adds, eyes glistening. "He'd forget who I am, but he'd remember feeling safe with me. Dementia patients need that comfort and security."

She recalls choking down tears when her father would say wistfully: "I really miss my daughter, you know!"

"He'd forgotten that I was in the house and what I looked like," she recalls. After a while, he began to sense that he wasn't living alone. Someone was around who could tell him the day of the week or play cards with him. But that someone was less a daughter than a vaguely familiar guest, a petite, dark-haired woman whom he would gratefully thank when she served him food, usually asking her to join him during meals.

"For the most part, I was a comforting presence, someone who made him tea and the occasional dinner, someone he could talk to. Daddy would tell me suddenly, 'I feel like I've known you for years!' and I can't help but laugh!" shares Shamayne, her face wreathed in a familiar smile.

It's like a meeting between old friends when I greet her over Zoom. In some ways, it is a reunion of sorts.

We go a long way back, Shamayne Samarakkody and I. Hailing from the same neighbourhood in Klang, I've often seen her father, Cyril, cycle around the neighbourhood. He was tall, quiet and steady; belonging to the old class of men who were silent providers and loving, if not distant, fathers.

Uncle Cyril, as I used to know him, was a regular fixture at my house while I was growing up. He wasn't much of a talker, but got along famously with my late father, who was one.

We inevitably lost touch, of course. As with all small towns, people grow up and grow out of the places they used to call home. I followed Shamayne's career for a while — albeit a little enviously — as she went on to pursue a successful career in journalism and publishing. The last I heard about Shamayne was that she'd found her "happily ever after" and moved to Doha with her husband.

As the years flew by, we became distant bystanders hovering on the sidelines of each other's lives — thanks to the advent of social media (we were Facebook friends). Meanwhile back home, familiar faces around the neighbourhood soon dropped out of sight one by one.

As with the lanky man who cycled around the neighbourhood every day. My father passed away a few years back and that slowly marked the end of the "old guards" who featured prominently in the Klang of my childhood.

Not too long ago, I stumbled upon Shamayne's Instagram account called Mind Concern, documenting her journey as a caregiver to her father who had dementia. "Uncle Cyril!" I thought, a little shocked but happy to see his familiar face surface on social media.

He looked remarkably the same albeit older. The twinkling eyes and smiling face belied a dreaded diagnosis that had shrouded his memory in an all-encompassing fog.

Shamayne had taken on the unenviable role of a caregiver. Her regular documenting of her journey in caring for her father has been both poignant and uplifting. She had exchanged her career goals for a loftier ambition of fighting to keep her father's memories alive in him. "It's really a losing battle," she admits softly.

Cyril, I read, had vascular dementia. Different from the more common Alzheimer's disease, it's a form of cognitive and physical decline often caused by multiple strokes. Those strokes might be virtually undetectable until, cumulatively, they result in brain damage, confusion and impaired mobility.

His diagnosis meant that his brain was functioning like a camera shutter that's constantly misfiring — sometimes fast, sometimes slow — collecting thousands of impressions that it could no longer process or organise.

"I lose a piece of Daddy as time goes by," she says, her voice catching. "It's like a race against time to keep his memories alive within him. Dementia is a cruel disease, and to watch a loved one go through this is painful to say the least."

Dementia care, explains Shamayne, is a long haul. Understanding the disease and its prognosis allows time to assemble a healthcare team, to mobilise family, to seek legal and financial advice.

"Still, there remains such a stigma about the disease. Caregivers feel so isolated and lonely," she laments. "My close friends were either in denial or just simply didn't know enough when I explained about my dad's condition. I often felt my frustrations were brushed away."

It soon became a personal quest for Shamayne to shed light on dementia.

"I don't know where this journey takes me, but I do know where it ends," she admits. She's quietly remarkable, as are many caregivers and families, turning this terrible illness into a series of opportunities to shed light on this debilitating disease.

Every September, people come together from all around the world to raise awareness and to challenge the stigma that persists around dementia. September 2021 marks the 10th year of this vital global awareness raising campaign.

This year's campaign shines a light on the warning signs of dementia, encouraging people to seek out information, advice and support.

"By documenting my journey with Daddy, I hope this might promote greater awareness of this condition," she says. "Perhaps it will encourage a clearer understanding of the individuals and families who are affected by it."

DREADED DIAGNOSIS

The more you know about dementia doesn't necessarily make the caregiving any easier, she attests. "It's not been easy," she concedes with a barely visible sigh. "You still look the same," I note enviously but she responds with chuckle of disbelief. "Do I? I'm turning 49 tomorrow!"

She feels like a mess, she adds shamefacedly. "It's not been easy taking care of Daddy," she admits again, shaking her head.

The 86-year-old Cyril was diagnosed with dementia 10 years ago. He'd been living at Shamayne's apartment for a while. "Daddy had come to stay with me back in 2010 after I found out that he'd had a couple of accidents at home from having fainting spells."

The transition to move was smooth. He sold his house and car and packed his bags to live with his daughter at her little apartment in Petaling Jaya. "I was planning to migrate to Australia at that time, but those plans went to moot when Daddy came to live with me."

While living with her father, she started to notice a few strange things about Cyril. For one, he'd get confused navigating around the small two-room apartment. For another, he couldn't figure out how to operate a door knob.

"He'd irritate the daylights out of me!' she exclaims, shaking her head. "He couldn't make himself a sandwich, he couldn't clean up after himself. It was so stressful because I was also handling a high-pressured job in publishing."

Eventually a full health check-up led to two major diagnoses. Cyril had prostate cancer, which required him to go for hormone injections every three months. He also was beginning to exhibit early signs of dementia.

The very idea of memory loss is counterintuitive. Even when we know that dementia is mercilessly erasing experiences, we still feel that its victims are capable of keeping emotional tabs on their relationships, since those bonds were formed gradually over time. Memory isn't just a mechanism that records events; it's an internal clock responsible for the impression of moving forward in time.

Because Cyril's clock had stopped while Shamayne's continued to tick, he and his daughter were perpetually out of sync. Because she remembered, she derived meaning from their encounters, while he, who soon forgot everything, couldn't. Although she spent a great deal of time with her father, he (in his reality) didn't spend time with her — which is why the both of them, in a very different way, ended up living alone in her little apartment.

"It was exhausting for me but I can't imagine how difficult it must have been for him," she says. Because he had come to stay with her, he wasn't able to carry on with his usual routines back in Klang.

Shares Shamayne: "I felt that he was robbed of that when he came willingly to live with me. So, I had to create new routines and come up with a social calendar for Daddy to have, while living with me."

From enrolling him at Tai Chi classes to ensuring he participated as a warden in church, Shamayne strove to keep him active and occupied. "My whole day revolved around Daddy and it drove me insane because I had to juggle a full-time high-pressured job while caring for daddy who was increasingly getting hard to handle."

On an ordinary day, there are countless conversations with him on where they currently live, dealing with his insistence of wanting to "go back" to Klang, handling past midnight "accidents" during which he'd mistake the laundry basket as the toilet bowl, getting dressed at 2am to go to work, calling up relatives to ask about his long-deceased mother, etc. The list of antics was endless!

"It wasn't easy," she admits candidly. "I'd scream at him to get his act together. I felt robbed of my own life. Everything revolved around Daddy but it wasn't his fault. Here I was, living with and caring for a man I barely knew. But he was Daddy and I was all he had."

TENUOUS TIES

"I was never close to my father," she confesses. Her parents divorced when she was just 2 years old. "My mother raised me of course, but my father had visitation rights."

Initially after the divorce, her mother stuck very closely to the court order. "Do you remember Emporium Makan?" she asks me suddenly. Of course, I exclaim. Every Klang-ite knows of the veritable landmark that has since been demolished. "That's where I'd meet Daddy every weekend," she says, half-wistfully.

Eventually, time healed the wounds of divorce. "Daddy started dropping by the house to see me more regularly. By then, I was a little older and mum had become more forgiving," she says.

In the evenings, Cyril would cycle to school and make unscheduled visits to see his daughter after classes. "He was a constant presence in my life but I wasn't always appreciative of his efforts," she confesses. "Whenever he came to the house, he'd stay outside and not say much. He just wanted to see me."

She was often impatient with her father. "I mean, he'd just ask me the same questions every day. 'Have you eaten?' "How is school?', you know… the mundane questions that I grew tired of answering!" she exclaims. "Sometimes I'd snap at him and say things like: 'Why are you asking me these same boring questions? Yes, yes, I've eaten. School is fine. Can I go now?'"

She pauses for a while, before continuing quietly: "But I mean, what else could he have asked me? He didn't really know my life. But I couldn't fault him for not trying. He'd know when my exams were and he'd always be advising me to study hard. As an adult, I can appreciate that. But not when I was a grumpy teenager."

He was like an outsider looking in but it didn't stop him from trying to bridge the growing chasm between him and his daughter. He'd still come every day to see her, despite the constant brush-offs he received from her. "Daddy never gave up on me. He supported and paid for my education right up to university. I knew I could count on him when I needed advice on career-related decisions."

Cyril flew to Australia for his daughter's graduation. "I could tell he was very proud of me," she recounts, smiling. "On hindsight, I can't imagine how he was able to book a flight on his own, pack his bags, make his way to the airport and fly all the way to Australia. It seems so surreal that once upon a time my father was able to do all that."

He'd scour the newspaper every day and would cut out any job vacancies that he felt would suit her. Her eyes glistening with unshed tears, Shamayne continues: "These days, as part of his activity, I'd make him cut out the headlines of the newspaper. Somehow watching him do that these days gets me a little choked up. I'd remember the days when he'd carefully cut out advertisements of job vacancies for me to apply."

RACING AGAINST TIME

The difficulty of this journey with Cyril lies in the fact that she never grew up with him. "I didn't know my father very well," she admits. "It's important for the carer to know what this person did in the past. People with dementia tend to live in the past. But I knew very little about Daddy's life, which was very sad."

Learning about Cyril was an insurmountable task for Shamayne because of his failing memory. "I was grasping at straws," she shares. "I didn't know his favourite song; I didn't know anything about his favourite TV shows. From the little I knew of Daddy, he loved walks, cycling, playing cards and football. That's was all I knew, so coming up with a care plan was definitely a challenge."

In the midst of it all, Shamayne did find love and eventually got married back in 2013. "It was my chance to get a life finally but the deal with my husband was that my father would need round-the-clock care and that his wellbeing would always come first." Shamayne ensured that his medication, schedules and care was taken care of while she was away with her husband in Doha.

The seven years away, she tells me bluntly, was a nightmare of navigating her father's care from afar. "I had to fly back every now and then to deal with maid issues and to ensure that my father was properly cared for. I'm just glad my husband was so understanding. My caveat for getting married was that I'd be able to take care of both my parents remotely from wherever I am."

When the pandemic hit our shores, she returned home to care for Cyril. "I had to come back once I had maid issues again. This time, I stayed on. It's been about two years already." When the lockdown occurred, the onus of caring for her father fell solely on Shamayne's shoulders.

The burden of caregiving hit her hard again. "What I want is to have a life," she writes in her journal. "To watch Netflix; to have an early night; to spontaneously meet friends; to sleep in; to grow my coaching practice; to be abroad with my husband; to have a good night's sleep; to go out without feeling guilty of leaving dad at home; to have a late night out… the list is truly endless."

Continues Shamayne in her journal: "Instead, what I'm straddled with is having to think about dad's needs, and this means sacrificing a large part of my life."

Drawing from her own experiences with Cyril, Shamayne has since become a mental fitness coach, focusing on helping caregivers of dementia patients. "I know the real struggles that come with caring for a loved one with dementia — feelings of fear and being stuck, along with resentment, guilt, sorrow and regret, interlaced with emotions such as joy and intense love that seem intent on creating chaos in your life," she says.

As a mental fitness coach, she wants to support people around areas she personally resonates with. "I know I can help because I've gone through the pitfalls and joys that come with being a caregiver," she asserts, adding ruefully: "But I'm still a work in progress!"

There's no turning back the tides of dementia but she's determined to hold on to him for as long as she can. "Caring for him is hard but it's something I'm glad to take on. After all, he's the bravest and the most stoic man I have the privilege of knowing and loving."

She concludes: "You can learn a huge amount from watching the bravery of people who have Alzheimer's and dementia. But we're not paying enough attention. It's a growing problem and we need families and carers to be educated, supported and understood."

To learn more about Shamayne's journey with Cyril, go to www.instagram.com/mind.concern/ or visit www,linktr.ee/mindconcern.

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