A QUIET ABSENCE THAT SPEAKS VOLUMES

That was then: Dr Chandrakant Shah with his wife Sudha, their sons and their families.

By DR CHANDRAKANT SHAH

Lately, when people ask me how my wife is doing, I usually answer with a smile: “She’s slowly declining but still with me”.

But the truth is more complicated. She is with me, yet not quite. My wife, my lifelong partner, now lives with advanced dementia. And while the body remains, the woman I shared countless conversations, dinners, and debates with is slowly slipping away into silence.

In the early days of our marriage, we did what most couples do – we argued. Sometimes, over important things like money or how to raise our children, and often over trivial ones like whether the curry needed more salt or if we should arrive on time or fashionably late to a friend’s party. But oh, how I miss those arguments now. It turns out that silence isn’t always golden. Sometimes, it’s just...empty.

I used to joke that I married her for her cooking – and honestly, it wasn’t entirely a joke. She had a magic touch, specially when making bhelpuri. A dash of this, a pinch of that, and voilà! – a meal so comforting that famous chefs would have bowed to her superior skills. I still remember how she would scold me when I hovered too long near the stove: “It’s not ready yet. You’ll ruin the aroma.” These days, the kitchen is quiet. Sometimes I try to replicate her recipes, but the bhel doesn’t taste the same. Neither does life.

Social customs were never my strong suit. My wife was my compass in the maze of etiquette. Which gifts to bring to a wedding, whether I could wear a suit to a prayer meeting, when to call someone bhai and when uncle – she knew it all. Now, when I invite someone, I ask her what I should make – a Gujarati meal or Mexican? There’s no response. And worse, I have no one to whisper to, “Can I just skip this one?”

Dinners with friends used to be a highlight. We’d get ready together, choose what to wear, discuss who would be there, and strategize how to avoid getting stuck talking to Mr. T and his endless tales of real estate adventures and conquests. At the gathering, I relied on her heavily – especially for the simple act of remembering names. I’ve always been terrible with faces and worse with names. But she had a knack. As someone approached, she’d whisper softly, “That’s Meena from the temple. Her daughter just got married.” I’d greet Meena warmly, pretending I knew all along.

Now, when I go out – rarely – I feel lost. I smile at people, not sure if we’ve met once or a hundred times. I miss my social translator, my decoder of nods and nuances. It’s astonishing how much we lean on our spouses for the small things that turn out to be everything.

There’s humour, too, in this new stage of life – bittersweet, like overripe fruit. Just a few weeks ago, I caught her pointing to the lamp, saying he was an intruder and asking me to do something. I realized that she was hallucinating, and I made a loud noise to get rid of him. I was quietly torn between amusement and ache. Once, she told me that she would like to go home even though we were sitting in our home. We made a few rounds in our own home and landed back on the same sofa, and it was amazing to see her face light up!

Nowadays, she rarely speaks in sentences. Most of her conversation is reduced to nods or shakes of the head to indicate “yes,” or “no”. More often there is no response (meaning she is in a state of hypoactive delirium where connections in the brain are not working; I describe it as “the internet is down”. When friends and family visit, she might nod or give a faint smile – sometimes even murmur their name. But more often, she simply reaches out and holds their hand. That’s her way of connecting now. And when she holds my hand, I feel all the words she no longer says. It’s a quiet form of communication, but deeply profound. Her fingers still remember what her voice has forgotten.

Sometimes I feel like I’m living with a house full of echoes – memories bouncing off walls. I find small reminders of her scattered everywhere: her handwritten telephone numbers of friends tucked in a cookbook, the saree and jewellery she used to wear for our anniversary dinners, the old wedding photographs.

I miss her advice – unsolicited but almost always right. She’d warn me not to wear clashing colours or remind me gently that I should not trust so and so as he would take undue advantage of my naiveté. Now, I sometimes step out looking like a confused rainbow and don’t realize it until I catch the pitying glance of someone in the grocery store.

To be clear, my wife is still here, and we still have moments – little flashes – of connection. A familiar song will play, and her fingers will tap the rhythm. I’ll mention our sons’ or granddaughters’ names, and her eyes will light up, even if she doesn’t say anything. These small victories feel like gifts. But they’re unpredictable and fleeting, like catching butterflies with your bare hands.

People often say, “At least she’s not in pain,” or “You still have her”. They mean well. But grief doesn’t only visit after death. Sometimes, it moves in quietly and rearranges your life without asking. There is a name for this – ambiguous loss – a kind of mourning without closure. And it’s real.

What gets me through are memories, humour, and a reluctant acceptance. I’ve learned to find beauty in repetition. In her earlier stage, I answered the same questions she asked, often ten times a day. I’ve let go of correcting her. Why bother? If she believes it’s Diwali in August, then maybe we should light a diya and celebrate. Who’s keeping score?

I also lean on the kindness of friends, neighbours, and occasionally strangers. The kind lady at the grocery store always asks how she is doing. Caring visits by friends who don’t mind if she does not say anything, but just holds their hand. My younger brother Yogesh’s hugging and patting her on her head and kissing on her cheeks; cuddles, kissing and singing her favourite songs by my elder son Sunil are heartwarming. My neighbour Devi and Wayne always being there to help me when I need them. These small acts are enormous. I am also lucky to have all her caregivers treating her like their own grandmother!

Sometimes I wonder what she would say if she could see herself now. Would she be embarrassed? Frustrated? Probably. But then I remember her compassion. If the roles were reversed, she’d be by my side with a patience I don’t always manage to summon. She would make jokes, cook my favourite dishes, and somehow make it all okay. So, I try to channel that version of her, even as I care for the version of her that remains.

I once read that love is not just about holding hands in good times, but also about holding hearts in hard times. I don’t hold her hand as much these days – she often reaches for mine first. And when she does, I squeeze it gently, letting her know I’m here. That she’s still my wife. And I am still hers.

Even in forgetting, there is a kind of remembering.

Key to learning to live with loved ones with dementia:

• Accept that the dementia is a brain disease and severity of disease increases with time, so learn different stages of the disease.

• Go with the flow: As time passes, your loved one will show different behaviours, adjust yourself with it rather than fight it.

• Expect: Lower your expectation from your loved ones as they are unable to fulfil it. Expect periods of stress but ask for help from your social networks, healthcare professions and Alzheimer Society.

• Look after yourself: Unless you are healthy, you cannot look after your loved ones.

SENIOR MOMENT

A QUIET ABSENCE THAT SPEAKS VOLUMES