It was sometime in 2011 when John Lester Cyril Samarakkody was diagnosed with vascular dementia. This common type of dementia leads to a decline in thinking skills and problems with reasoning, planning, judgment, memory, and other thought processes caused by brain damage from impaired blood flow to the brain.
In an interview with Qatar Tribune, Shamayne Leelawati Samarakkody, the only child of the elder Samarakkody, who is also a dementia care specialist, dementia advocate, and mental fitness coach shared her own dementia story with her father. It’s a journey marked by a rollercoaster of emotions: love, grief, anger, hope, guilt, joy, and more.
“I’ve been on autopilot a long time now. Just doing what I need to do. I’ve lost so much of my father, especially in the last year. He can’t even talk to me now. He listens, I know he does. But he can’t even walk. I used to be able to take him out. It’s so hard to see a little bit of him chipping away. A little bit of him goes at a time. It’s so hard. It’s not easy for people to understand this journey, unless they go through it,” said Shamayne.
For many years after his diagnosis with dementia, Samarakkody remained almost the same. He would display some unusual behaviors from time to time. But in 2017, his unusual behaviors started becoming odder and more frequent. He started waking up at 2:30am believing that it was time to get up in the morning already. Then it progressed to him putting his dentures on and getting dressed up while saying he is going to work at 3am. It’s been decades since he retired from a job in the construction industry.
“My father, now he’s just a shadow of his former self. But he once helped build the national airport. He helped build the parliament house in Malaysia. That was one of his projects. But now he’s forgotten. People come and go. That’s the reality of life,” Shamayne said.
After getting married, Shamayne moved to Doha to join her husband who was based here. She hired helpers back home in Malaysia who cared for her dad and reported literally everything to her round the clock.
However, Samarakkody’s health condition got progressively worse, especially during the COVID-19 pandemic.
Around that time, Shamayne also went back home to be the sole dementia caregiver of her dad, since the helpers had to go back to their respective homes during the lockdowns.
“It was during COVID-19 pandemic when things actually took a real turn for me because at that time I didn’t have a caregiver. I had left Doha and gone back to Malaysia. It was the toughest times of my life because I was caring for daddy 24/7 alone. And his decline was very swift too,” said Shamayne.
It was around this time when Samarakkody began displaying very unfamiliar ways such as urinating into his laundry basket thinking that it’s his toilet. More frequently, he would also forget that Shamayne who was beside him was actually his one and only daughter.
“When daddy forgot who I was, it’s painful. I don’t know how to explain it. I was scared. Because I knew this was a progression. I’m a very emotional person. My emotions can range from being so mad and resentful at my father to deep sorrow, all in the span of 3 minutes. You go through this roller coaster of emotions when you’re in this situation. On one hand you’re so resentful because you can’t get a life of your own. You’re sacrificing so much at this age, like I should be enjoying my life. At the same time you’re thinking ‘he’s the most precious and most important thing in my life, I would give anything for him to be well, comfortable, and happy,” Shamayne added.
Then in August 2023, Samarakkody had another stroke, which was quite detrimental. Since then, he could no longer walk and his speech has also been impaired.
“I refuse to let him stay bedridden. He’s not bedridden. We transfer him from the bed or the wheelchair and sit him on the sofa, or we take him to the garden. Since August last year, he would still do a few things. But now he completely depends on us to do everything for him,” added Shamayne.
With a heavy heart to leave her father behind, Shamayne had to go back to work in Doha in order to provide the quality care that she desires the most for her dad. She put up an interdisciplinary team of health professionals including: speech therapist, physiotherapist, doctor, nurse, and dietician to manage her dad’s condition, in addition to the helpers.
She said, “The reason I’m here in Doha and not there is because my earning capacity is better here than it is in Malaysia. Do you think I want to be away? I don’t. Especially now in his final years, months, I don’t know. I don’t want to be away. But in order to give him the care that he needs, I have to do this.
“I have been resentful of this journey. But at the same time it’s my biggest blessing. I’m so blessed to be able to do this for him. I cannot imagine not doing this. I cannot let go. And I hope by God’s grace I can continue to take care of him at home. I want to give him the best personalized care possible. People who know me and have seen what I do for him all say ‘you’ve given way beyond’. But as a daughter, it never feels enough. They say, ‘you want your daddy to live forever. But you have to realize that death is just part of life’”, Shamayne added
Unfortunately, Samarakkody had pneumonia in November last year. Since then, he has only been tube-fed.
Shamayne continued, “It must be because of the dementia. I don’t think he realizes that he cannot walk, I don’t think he realizes that he’s not even eating, because he’s been tube-fed since last November. It’s been harrowing. But the thing is I don’t think daddy knows that he’s actually suffering. The thing about daddy, when you ask him ‘daddy, how are you’. He would say, ‘fine, fine, fine’. His favorite word was fantas, which is short for fantastic. And that’s the beauty about him.
“One thing I would always remember about daddy, he would always praise the Lord whether times were good or times were bad, he would always praise the Lord and give thanks for everything. There are always unseen blessings we don’t know. He was always looking at the bright side of things. Daddy was always about working hard, always becoming better, and being grateful,” she added.
Earlier before Samarakkody’s health began to significantly decline and when he was still able to move around, even sing, and dance to his favorite music, the father and daughter duo had a routine spent on music therapy.
“Music is a very big part of our routine. He loves to dance. That’s what we do at night. And music always has a way of rekindling memories for people. It’s a nice way to connect with someone whom you can’t connect with anymore. And the thing about dementia is I lose a bit of my father everyday. It’s constant grieving. I remember the day when he forgot to write the letter ‘R’ when he was writing a birthday card for someone…,” Shamayne reminisced.
Shamayne has just recently returned to Doha from Malaysia. She stayed with her dad who had been readmitted to the hospital for about a month.
“I was very fortunate because my current employers allow me to work remotely. So I’m very blessed. I always look at the small blessings. It is not easy; I’ve been doing it for 10 years. Thankfully, I get to go back home every now and then. All these years, my husband has also been so supportive,” she added.
During this recent trip back home, Shamayne was once again confronted by the painful reality of death. Every time she goes home, there’s always the possibility that it might be the last time that she’s spending time with her dad. In fact, Shamayne has made it a habit not to say goodbye to her dad, even when she’s leaving for Doha, or anywhere else.
During her younger years, Shamayne’s relationship with her dad was not as intimate as it is today. She grew up in a family wherein saying ‘I love you’ to each other wasn’t really the norm. Today, she makes sure that she tells her dad how much she loves him everyday.
She said, “I know he can understand. He’s still alert. He just might not be able to respond. I tell him every day that I love him very much. I never fail to miss the opportunity to tell him this. I have the last card that he wrote for me two years ago. It’s very difficult to read. The caregiver helped him to draw a father and small girl. Then inside was a message on my birthday. He said, ‘My dear daughter Shamayne, today’s a very special day for you and everyone who knows you. Thank you for everything you do for me’.
Worldwide, the topic of dementia among patients and even caregivers is still a taboo. However, Shamayne also inspires people through her advocacies on her Instagram @mind.concern and other platforms.
She said, “It’s important to educate people, this is what I try to do with my social media platforms. This is what I try to do by telling my story. I knew that I cannot be the only person in the world who’s going through this. I’m sure there are millions around the world who are suffering like me. Then I thought I’m just gonna start an Instagram page, and on daddy’s birthday I started the Instagram page documenting our life.
And then the stories started picking up, and that’s when the local media started interviewing me on radio and tv, and inviting me for the podcast and some other platforms that I speak on.
“Because I was so frank about it, and so many people have approached me saying ‘this is how I’ve always felt but I thought I was alone in this’. I just said the truth. I hate this, this is not what I signed up for in my life. But would I have it any other way? I wouldn’t. I was so honest about it, and I think that’s what struck people. It’s the truth. I’m not trying to say I’m such a good daughter. They said, ‘I’m so happy I read your story. I thought I was the only one who felt this way. I’ve been so guilty and miserable’. They could relate to my story, because they’re all in it but they don’t talk about it. But I just decided to talk about it,” Shamayne added.
Currently, Shamayne is still busy caring for her dad either while she is with him back at home or caring for him from afar. At the same time, she has also set a vision for her dad and other families struggling with issues surrounding dementia.
She said, “I think now I have my sights set on bigger things like really trying to push for changing policies. I’m just an ordinary person, just another person down the road. I’m just trying to make small changes in my little corner of the world. My goal is to help countries support families. They need financial assistance, medical assistance, access to healthcare facilities, and they need to be recognized. Families need to be able to speak about it. Policies need to be set in place.
“Countries like Qatar are paving the way, but there’s such a long way to go for other countries in educating people, in providing the services that people need, and also recognizing that it is a tough ride for families. I hope I’m able to work towards really creating more awareness around the disease, and really just telling people to think about your old age. Think about what you’re gonna do in your old age. Plan for your old age. Do you have the finances for that? Make those decisions now,” added Shamayne.
She also has a reminder for dementia caregivers around the world: “Oxygen mask on first. Because if you don’t take care of yourself, you’re no use dead to anyone. You got to take care of yourself first. You have to fill your cup first before you can pour onto others. You can’t pour from an empty cup”.
(Photo: Shamayne’s journals on Amazon based on her practice as a mental fitness coach, designed for dementia caregivers)
