Around the time the national lockdown finally came to an end last year, Amma’s memory started fading rapidly. What had begun—seemingly innocuously—as mild cognitive impairment and progressed gradually over the years, suddenly turned into a vicious, relentless attack on her memory, cognition and indeed her personality. Soon we had a clinical name for Amma’s acute distress, the hallucinations, wandering, paranoia, and the voices in her head: Alzheimer’s disease. It turned our little world on its head overnight.
It also sent us into denial. How could our Amma – strong-willed, fiercely independent, stoic – have Alzheimer’s? Wasn’t she gallivanting around her beloved city of Mumbai just before the pandemic? Didn’t she cook us a delicious Vishu sadya this summer? Besides, isn’t 73 too soon to develop this disease?
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“The first, most important, part of caregiving is to accept the diagnosis; denial can lead to a lot of emotional pain,” says Dr Santosh Bangar, a Mumbai-based neuropsychiatrist, specialising in dementia and geriatric psychiatry. For me, acceptance was slow to come, but when it did, it was liberating and empowering. Looking back, naming Amma’s condition and embracing Amma for what she would become was perhaps the most powerful way to start my journey as a caregiver.
I will remember the last year-and-a-half as the time when Amma and I set out on a mission to remember, to not forget. Audacious, fraught with heartache, and guaranteed to fail. Yet, oddly rewarding too. We spend our days listening to Amma’s favourite songs, singing along, basking in the shared joy of every word recollected, every inflection executed to perfection. We write down words, so she doesn’t forget the spellings; we do simple math problems in the hope that it all adds up in this project to preserve memory; we colour intricate Mandala patterns in bright hues so we can recall the name of each shade and how happy it makes us; we go over the recipes for her favourite dishes and even cook together on good days.
Since recent memory gets erased quickly and new memories become increasingly difficult to create in patients with Alzheimer’s, we find ourselves following the trail of sepia-toned reminiscences and stories. Familiar boundaries blur and eventually collapse as we navigate the spaces between remembering and forgetting, past and present, reality and imagination, mother and daughter.
Amma and I have never been as connected with each other as we are now, when known ways of communication have become ineffectual. With Amma’s words often failing to convey associated meaning and her emotions mostly articulated in behaviour, I fall back on intuition, instinct and keen observation to understand what she is experiencing. But there are also days, when I simply can’t figure out what she’s trying to communicate. When she says she wants to go home, is she missing our father, her parents, friends, childhood home, her other children?
“One of the baffling things that many of us see in (cases of) Alzheimer’s and dementia is our loved ones constantly asking to go home. It took me a while to understand that 'home' is more than just a place, it is a feeling. It represents all the feelings associated with home: safety, comfort, and love,” says Geeta Iyer, who was the primary caregiver for her father until he passed away from dementia last year. Amma’s distress, rage or silence on a given day could stem from loneliness, hunger, thirst, pain, or a urinary infection. Or it could just be the frustration of knowing that her language and experience are not connected any more.
It’s a tricky, slippery terrain. It’s a lonely, isolating experience. And not just for Amma. Perhaps, things might have been a tad easier if more people knew more about Alzheimer’s. Perhaps stepping out for a stroll with Amma or having visitors over would be less traumatic if people knew how to talk to her, what not to ask—in fact, too many questions cause her to panic, both because she doesn’t remember and because she knows she doesn’t remember. “It's difficult to explain the ramifications of dementia/Alzheimer’s on a loved one to an outsider. After many trials and errors, I now have a set of instructions that anyone who wants to visit/chat with my Mum must follow,” says Indrani Bose, who has been caring for her mother since 2016. “The flipside is that you will be disliked by most of your visitors. But that's a small price to pay.”
In a country where an estimated 5.3 million people above the age of 60 live with dementia (of which Alzheimer’s is the most common cause), the general lack of awareness around the disease is frightening. Not that I knew much about the disease before it came calling on us. My reading list now features a bunch of websites dedicated to Alzheimer’s and dementia; my email subscriptions include daily updates from resources on caregiving. But I don’t have all the answers I need. A support group for dementia caregivers and a kind doctor help me negotiate the daily challenges of caregiving and process the sense of ongoing grief and loss I live with. They also remind me, always, to take care of myself while I take care of Amma. “The caregiver may experience anger, frustration, agitation, mental and physical exhaustion. In extreme cases, depression and anxiety disorders are not uncommon,” says Dr Bangar. “Leaving these unaddressed is certainly harmful for the caregiver and it can also lead to behavioural problems in the elderly as they tend to mirror the anxiety.”
I have experienced all those emotions in the last year (add guilt to that list because I never know if I’m doing enough), but that’s only one part of the story. The other part is the love and trust I get in return, the rare glimpses of happiness on Amma’s face on good days, the mirthful chuckle when she suddenly recalls a funny incident from the past; she even lets long-guarded skeletons tumble out of the cupboard now that she doesn’t remember they are not to be shared!
“Caregiving can be a rewarding experience if you set the right expectations for yourself, stay away from guilt, and know that you’ve done your best for your elder,” says Amrita Patil Pimpale, founder of Echoing Healthy Ageing, a social enterprise that works towards building a supportive environment for dementia and Alzheimer’s caregivers. “But remember, you cannot go on offering from an empty cup.” Preserving and nourishing oneself is a crucial aspect of caregiving for a loved one, and it is important for caregivers to avoid becoming invisible patients of the disease.
As Amma loses a bit of herself rapidly—cognition, memory, language—and the caregiving gets more physically and emotionally demanding, the one excruciating thought that crosses my mind often is this: whatever we do, there is no turning the clock back, there is no cure, Amma won’t ever be her normal self again. Someday, Amma may even stop recognising me. But I will always remember that moment, on a rainy afternoon last August, when she looked into my eyes, her own confused eyes lighting up with joy, and called me, softly, “Amma!”
Sangeeta Menon is a Mumbai-based communications consultant, writer and editor. Some Useful resources for caregivers of Alzheimer's patients include dementiacarenotes.in, ardsi.org, alzheimers.org.uk and alz.org.
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