'I made pretend calls to your friends who had passed on': S'pore woman caring for dad with dementia

Soft truths to keep Singapore from stalling.

Mothership | June 19, 2021, 11:40 AM

PERSPECTIVE: Usha Pillai is an educator who has been caring for her parents for several years.

Here, we reproduce her letter from Letter to my father, a book edited by Felix Cheong and published by Marshall Cavendish.

In her letter, Pillai reflects on her experience of caring for her father, who was diagnosed with mild dementia at the age of 96, in 2018. Pillai also writes about how she saw a different side of her father during this time, which brought them closer.

You can get a copy of the book here.

By Usha Pillai

Father, you used to drive me crazy with your impeccable routine. How could you – or any human, for that matter – be so disciplined? I felt I could never match up to you. For example, all your meals, from breakfast, lunch, tea to dinner, were all taken at the same time, every day.

And for every meal, the same amount of rice and curries, ending off with yoghurt – you knew the exact amount you could stomach. There was no trace of greed or craving for anything more. Even if Amma had cooked something yummy, you did not ask for snacks – nothing. You just knew when to stop.

Of course, your diabetic condition had made you very conscious about your sugar intake and you followed the doctor’s regimen strictly, like a schoolkid under detention.

And every morning after breakfast, you had your “journalist moments” with The Straits Times, talking about news bits to yourself, followed by the rendezvous with your table, where you sat to pay bills, note down the calls you needed to make and other to-dos.

You maintained your routine even when you had mild dementia

Do you know what the icing on the cake was? You continued this routine even after you had mild dementia. You could forget where you were, where your family was, which country you were in, but you never failed to follow your 8am, 1pm, 4:30pm and 8pm routine for meals! I admired you for this, but it was not something I could keep up.

You used to chide us for this sometimes and got a little rattled when we could not keep our things in order, as you expected the best from us.

It was unnerving and, at times, I used to hide from you but it had taken time for me to understand you. That under this strict disciplinarian, there was also a man who was soft, with so much love in him.

You were not open with your feelings but you could demonstrate affection in other ways

Father, although you were not very open with your feelings, you could love, and you showed it in subtle, unexpected ways.

Once, you had written me a note which I will never forget. During this period, both you and Amma never remembered you were actually at home and every evening, would ask to “go home”. And you thought you needed money, if not you would be asked to leave.

One day, I clarified that you did not need to leave and that I had money. Then you wrote this note to me: “Usha, you really sprang a wonderful surprise. I was almost thinking we made a mistake – and (would be asked to) get out! But God is great. Long live Usha.” Within brackets, you added: “(Too Tired) – Father”.

My heart melted, for so many reasons. Firstly, your language was still lucid! How was that possible, Father? At 96, you had dementia. Secondly, you probably feared being asked to “get out” every evening – even though no one was chasing you out – and this saddened me. Thirdly, I could sense your love for God, and fourthly, your love for me.

You began re-living your days as a journalist travelling abroad

The doctor had diagnosed mild dementia. But somehow, compared to Amma, it was different for you. For one thing, you were still independent and mobile.

And, as always, your routine was unbroken, right down to how you sat so still and chanted your daily prayers. No one would have believed your diagnosis when they heard you pray.

But the slips in your conversations betrayed you.

You began speaking of an exciting life – travelling; attending conferences; waking up in hotels in Sri Lanka or Indonesia; re-living your journalist’s life – in another dimension in your mind.

Every morning when you woke up, you said you had returned from a different country. I used to balk, argue with you, then try to “knock sense” into you. But dementia has a way of punching you in the stomach, as if to say: “Hey, now you’re in my world.”

I saw a different side of your personality emerge

I finally realised that I could not bring you back to the “normal” world. This was your new world now and I had to invite myself in.

In this world, I made pretend calls to your friends who had passed on, as you were upset they did not contact you; in this world, I found you standing outside my door at midnight, asking what happened to the “seminar” and where were the “speakers”; in this world, you agonised over so many things, and found relief only in knowing that you were safe in this house; in this world, you and Amma held hands more often than I had seen my whole life.

In this world so much of your inner nature and personality emerged.

An honest man with love, and discipline, and you expected the same from others. Dementia did not diminish you, it made you real.

I truly felt that you and Amma lived blissfully together in these last few years, each not realising you had - and that your partner had – dementia. For what you do not know cannot hurt you, right? Each living in their own world and sometimes, in each other’s world.

I also think that you and Amma must have conspired at some point, in some dementia-space you had created together, to drive me a little crazy once in a while. Just like how my sister and I used to drive you both a little – okay, a lot – crazy when we were young, and ignorant.

In fact, I swear sometimes both of you deliberately talked to me together, at the same time, about something that happened today, what food to cook, an old friend who passed away. My head would swivel left to right, right to left, like at a tennis match, not knowing whom to pay attention to!

The period leading up to your death was a heartbreaking process

Throughout the illness, your physical strength was declining. Whenever you fell down, nothing in your body broke, but a little part of my heart did. You were also waiting; you would joke that your passport was ready, you only needed the visa to be chopped (stamped)!

July 12, 2019 – your visa was being prepared. That fateful night, you were sitting on the bed after the helpers had propped you up from the floor.

My heart broke. I saw you with some broken teeth, blood on the floor and your t-shirt. But you were talking away with your usual innocence, maybe nonchalance, as if nothing happened, and I had to comfort the emotional helpers: “He is okay lah. He is still talking. If he is not talking, then worry.”

Your hospital stay after that was agonising, I know – short of slapping the nurses, you made it clear that you did not appreciate their constant questions and tests. Like a beast trapped, you were yanking out your tubes at night to “escape”.

And you missed Amma. When she came in for her last moments with you, both of you held hands, like star crossed lovers knowing you would not meet again. But, we did not know this then.

One doctor expressed surprise that you did not feel the pain from a fractured hip and a silent heart attack which happened in hospital. I told him that you were well taken care of by powers beyond the medical. I also knew your departure was meant to be as painless as the life you had given us while you were alive.

On July 19, 2019, your visa was finally chopped, and you were ready to leave. The nurse had summoned us to the hospital in the wee hours of the morning: “His blood pressure is dropping.”

You were supposed to return home the day before, but to a bedridden life – one which I dreaded, as I knew you would not be able to handle it.

So, there you lay on the bed, lost in another world, eyes peacefully shut, trying hard not to have to open them again. Your BP was slowly dropping. Very, very slowly.

It was almost seven hours since we received the call. They say the soul finds it hard to leave when loved ones are around, due to the strong attachment. So, just after 9am you waited till I got distracted by some movement in the ward and I turned back to look – how quickly you grabbed this chance and made your final escape!

When I turned back to look at you – it seemed you were pretending to sleep, but I knew that you had gone. The final piece of my heart broke.

How I wish you could have seen how Singapore's politics have changed

Father, sometimes, I am glad you are not here today because you would be utterly anxious about Covid-19. You would be following the daily rise in number of cases and wondering whether your family members in India were safe. And whether your long-gone friends were in good health. You would have asked me to call them, and I would have to make my pretend calls.

Every day, you would be cursing some politician or complaining about irresponsible Singaporeans who broke the rules. You would worry about me going to work – would I get infected? Would some colleague pass it to me? All this would have worn out your weary mind and body.

But I also feel sad you did not get to see the changing face of Singapore politics – how much more colourful and vibrant it is. And how Mr Trump, whom you found an awkwardly amusing politician, is no longer in power. Your heart would have skipped with joy and you would have made some snide comment – hah!

The journalist in you never died, even with your failing memory. You sat there every morning, The Straits Times in your hands. Every. Single. Day. I wanted to use you as my role model for all the young people in my life.

When your eyes were failing, I had stopped the ST subscription. But you looked lost without it. When we went for your medical appointments, you would pick up the papers and glance through, even though I knew you could not read the fine print.

That was when I decided to re-subscribe the newspapers, because holding the paper in your hands every morning for almost an hour was a routine I should never have disturbed.

Father, is there anyone at all who feels they have not done enough for someone, when that someone passes on? Should I feel the same, father? Well, perhaps I could have curbed my “inner grumbling” when you called “Usha” to share a 15-minute story that never happened. But that would have made me unreal. This is who I am and this is how you were.

You were my father: Sweet, disciplined, real, and I love you.

Top image via Samer Daboul/Pexels, Quino Al/Unsplash.