Long Read: The inheritance of memory loss
Somer Massey has been a banker all his working life, a decade of which he spent in Dubai.
Forgetting who you are and the life you’ve lived is clinically boxed into a neurological spectrum called dementia. But what does it mean to be inhabiting a vacuum?
“In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life.”
— Oliver W Sacks
Somer Massey has been a banker all his working life, a decade of which he spent in Dubai. A few years ago, he moved to Canada. His sisters had moved there long back, and his parents — who lived in Delhi earlier — had followed in 2012, where his father (subsequently) passed away (due to multi-organ failure) when he was well into his 80s, after being diagnosed with Alzheimer’s — a specific in the broader swathe of dementia. While Somer lived in Dubai and his dad was alive, his parents would visit regularly. Those days, whenever they would go out, his father would invariably check out traffic signals from inside the car and say, “The green light is much greener here, greener than they are in Canada and India — there, they have a blue tinge… here, they are so properly green.”
“It is said they don’t say what they mean, don’t mean what they say,” Somer tells me on the phone from Toronto. “Some things would register very quickly [for him] — I think the traffic lights jogged his memory, became a conversation cue, so he would repeat it over and over again, often on the same stretch.”
It was on an earlier visit to Dubai that his father showed the first signs of forgetfulness. There had been an accident, one that had required a hip surgery. In a post-operative haze, he’d asked his son who he was when he dropped by at the hospital to see him.
“I’m Somer,” he responded.
“You are Somer? How strange, I have a son called Somer too, but he lives in Dubai.”
Another time, when Somer broached the subject of cricket with him — his dad was cricket-crazy and father-son would habitually do post-mortems of matches, especially if India was playing — he asked, “Cricket? Do they still play cricket these days?”
Life coach and therapist Delna Mistry Anand talks about her Dubai-based friend’s dad who lives in Karachi. Once, when her friend was visiting him (she’d usually try and go over every two weeks, on weekends), he told her, as she stood in front of him, “You say you are my daughter, but you’re not my daughter, she’s 12 years old — you’re not 12, you don’t look 12.”
There’s another dementia patient Delna knows, a woman, who makes tea at a certain time every day, but it’s always tea for two. “She makes it for someone, looks for that someone but she can’t remember who it is so she can’t tell me.” She also bakes a picture-perfect pie — for her, the process is still a muscle memory — but once you cut into it, you see it’s full of eggshells. While whisking the whites, she doesn’t remember the shells need to be discarded.
The mental mapping
“Who are you exactly? What about me? Who exactly am I?”
— Anthony in The Father (played by Anthony Hopkins, lines written by Florian Zeller)
Trying to get inside the mind of someone who’s lost their memory is a lot like watching the lights fade. Which is perhaps the most remarkable bit about Anthony Hopkins-starrer The Father, where clinical terms and prognoses are given short shrift. There may be undertones of medical inputs, but those slip in between the cracks.
You get to, instead, observe the unfolding of the distorted mental map of a man who believes he’s being gaslighted by everyone around him, including his daughter (who he lives with). “There is something funny going on. Believe me, there is something funny going on.” His daughter sees it in his eyes. “He didn’t know who I was. It was like I was a stranger to him.”
In neuroscientist Lisa Genova’s book Still Alice — which was adapted into an Academy Award-winning film — the protagonist, who’s detected with early onset of Alzheimer’s (at 50), wishes she had cancer instead, she permits herself the fantasy. “With cancer, she’d have something to fight. There was surgery, radiation, and chemotherapy. There was the chance that she could win. Her family and the community at Harvard would rally behind her battle and consider it noble. And even if it defeated her in the end, she’d be able to look them knowingly in the eye and say goodbye before she left.”
Genova penned the book after reading everything she could find on Alzheimer’s and interviewing neurologists, research scientists, genetics counsellors, social workers, and, most tellingly, those living with an early onset of dementia. “They were my litmus test,” she stated in an interview to alzforum.org, “letting me know if what I’d written rang true.”
Alongside the Covid-delayed release of The Father and resumption of yet another round of conversations on the decay of brain neurons, former Welsh rugby union player Alix Popham gave a now-famous interview to the BBC. He opened up about grappling with dementia at 40 (it has possibly been caused by concussions and sub-concussions sustained by him through his career, but that’s another story): “The neurologist has given us a five-to 10-year management plan, but how quickly the symptoms get worse after that, nobody knows.
That’s the scary bit for me… You end up talking about adapting the house, carers coming in, and as a 40-year-old to hear that was upsetting.”
He told the BBC, as a rugby player, he always knew his body was “going to be sore in retirement”. But “nobody knew your brain was going to be in bits as well”.
Among the “chunks of memories” Alix no longer has a handle on is the one of a treasured encounter with Nelson Mandela when they played in South Africa. They met before the game. “I’ve got the picture on the wall, but I can’t remember meeting him.” During lockdown, when they repeated (on television) “the 2008 game against England, when we won at Twickenham”, Alix realised he had “no recollection of being on that pitch” where history was created. It was the game where Wales trailed 19-6 in early second half, but fought back to rack up an epic 26-19 victory.
Author Avni Doshi’s 2020 Booker-shortlisted novel Burnt Sugar hinges on a fractious mother-daughter relationship, that’s made complexly more delineated because the mother is diagnosed with dementia. It’s a throwback to Avni’s own brush with dementia — her grandmother’s. It led her to do extensive research on the subject. There was too much information. “I didn’t know how to make sense of what was in front of me. Writing was my attempt at clarity,” she says.
“The truth is we have no idea how they are feeling, we use approximations and similes — we are limited by language.”
The anatomy of forgetting
“None of us wants to be reminded that dementia is random, relentless, and frighteningly common”
— Laurie Graham
There was one particular story Somer’s father would keep repeating. How he wanted to wear a green suit at his own wedding, and how that really got the goat of friends and family. “I was obviously playing a prank on them, but I loved how I managed to ruffle feathers,” he would recount, and laugh. “They would say they were not going to let me have my way since I’d be making a complete fool of myself, and were busy looking for more a ‘suitable’ suit!”
Somer and his sisters would let him talk about the same incident on loop. “What mattered was that he, while remembering that incident, inhabited a happy space.” They could not afford to get irritated or blow a fuse because it was resembling an echo chamber. “That’s easier said than done, I know. But we told each other let’s remember the good times: the love he shared, all he’s done for us, his endearing quirks — adoration for Elvis, obsession with cricket. The memories gave us strength and succour.” Finally, acceptance had to be key. If he wanted another cup of tea because he’d forgotten he had just had a cup, they gave it to him. With a smile. “We were indulgent, we treated him like we would a much-loved child.”
There is a huge amount of guilt tagged in those who feel they are unable to do enough for a relative or loved one with dementia, says Delna. “These are people who cannot be with the patient because they are in a different city or country. Then, there are those who are direct caregivers, they are usually physically, emotionally overwrought, and they don’t seem to see a way out of it because doctors do not know what to say beyond a point. They start reaching out to healers, hoping that ‘alternative’ treatments will help, they’re driven to a point where they’ll believe anything. The questions I face are: how much more is there for me to do? How much longer do I have to put my own life aside?”
There are no easy answers, and, often, resentment sets in.
Hiring staff to help you out becomes tricky. “Many of them get intimidated, especially if the patient is difficult to handle — and most have bad days — so they leave at the drop of a hat… Basically, you cannot count on an external agency, and will need to be invested personally.”
Avni points out that one eventually grasps “you can only live in the present moment, and try and meet the other person where they are. That can be difficult because our relationships are informed by the past.” It can be “terrifying and overwhelming for caregivers” to deal with a mind that is “degenerating while the outer appearance often remains the same”.
Involve them in group activities, get them outdoors, make them feel engaged, suggests Somer. His dad, till the end, was given that leeway. “He would, most times, forget what he did, but he enjoyed doing stuff for as long as they lasted…”
Symptoms can be managed to a certain extent, agrees Delna, by keeping one busy with something harmless, keeping them in the company of loved ones, ensuring they are kept in a “safe and happy” place as much as possible.
Remains of the day
“Nothing can last forever. There isn’t any memory, no matter how intense, that doesn’t fade out at last”
— Juan Rulfo
With Somer’s father, his mother was the principal caregiver. On the wrong side of 80 herself, it took a lot out of her tending to her husband’s “demands”. It became her life, all that she could think of and work towards. When he refused to have vegetables, displaying child-like stubbornness, she would pulp veggies and make ‘parathas’ with them, which he’d eat happily. With him gone, she’s become even stronger person — that’s what she inherited. She’s past 93, lives alone, independently, cooks for herself.
As for Somer, he briefly toyed with the idea of getting himself tested for a possible genetic “risk”. But his friend, a doctor, advised him against it. “Just in case you show up a positive strain, what would you do? Stress, worry, get depressed? Why bother?”
It made sense. “I’d rather not think about it,” he says.
And if you do think about it, offers Avni, you realise “memory is fragile for all of us, whether we have dementia or not.”
In Still Alice, Genova questions what Alice is living for — given that her yesterdays are disappearing, and her tomorrows are uncertain.
Her answer is: “I live for each day. I live in the moment. Some tomorrow soon, I’ll forget that I stood before you and gave this speech.
But just because I’ll forget it some tomorrow doesn’t mean that I didn’t live every second of it today.”
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