Dementia came home in the form of fallen leaves.
My mother woke up one day and went to war with the leaves that littered our driveway: Glossy green mango leaves. A plump red one from the jackfruit. Yellowed, withering leaves from a Manilkara Zapota. Stray leaves with unknown names that blew in, uninvited.
She would stop what she was doing – Cooking, reading the newspaper, watching a show - to go out and pick up leaves.
“The yard needs to be perfectly clean!”
As days went by, it wasn’t enough to sweep the yard once a day. Trees care little about our daily rhythm, and they shed leaves as they please. My mother began to spend more time outside and the leaves continued their slow descent. Watching her from a distance, I thought about the impossible tasks in folklore: Carry water through a sieve. Trap smoke in your hands. Fill up a leaky bucket. Tasks that can be completed only if a miracle happens.
**
In Chennai, I spoke to a psychiatrist, who asked me questions about my mother’s life, her days. “There seems to be an underlying problem, but I need to see her. Is there any way you can bring her in?”
Amma vetoed the idea. “A psychiatrist? No way. People will think I have gone nuts! I am okay. And what’s wrong in trying to clean up the yard anyway?”
More symptoms began to surface. A phone call that made no sense. Mild hallucinations. A spell of dizziness.
We managed to drag her to a neurologist. She glared at the doctor who gave her a basic cognitive test. To a person as proud as my mother, it would have been an insult to be asked basic arithmetic and language questions. “Yes, 21+11 is 33. Of course, I know my children’s names.”
There were many cognitive tests over the next few years - Addenbrooke's Cognitive Examination, Neuropsychological Assessment. Amma sat through it all with the enthusiasm of a petulant child who hates to be tested. The tests didn’t love her back either. “Poverty of speech and thoughts,” said one assessment.
The last time she took one, the counsellor asked her to say a word beginning with P. She was quiet.
On the way home, she told my sister: “When she asked me that question, what I really wanted to say was Pampara Viddi. Silly Fool! But I didn’t say it."
Probably it’s pseudo dementia, the doctor suggested after the first assessment. “It can be cured. But let’s run a few tests.”
The MRI suggested it wasn’t pseudo dementia. A few tests and some months later, more names were floated: Hypoplastic Vertebral Artery.
Cerebrovascular disease. Intracranial small vessel disease.
A year later, we got a definitive diagnosis: Vascular dementia.
**
The name of her condition didn’t matter anymore. By then, we were aware that she had a painful degenerative disease with unpredictable symptoms. Things were changing within her at an alarming rate. The decline was visible: Slower movements, heightened confusion, incontinence, weaker muscle tone.
We were lost. We no longer knew where we stood. How much longer would the part of her that loves us still exist? Were we doing the right thing by her? More importantly, how was she experiencing the world now? I wrote to a friend: “She seems even more lost. From where we stand, we are losing pieces of her every day. It’s like parts of her go missing and sometimes get rearranged and reassembled. And if it is so frightening for us, imagine how it would be for her! With each bit of her that is lost, we re-shape ourselves to fit into the new reality.”
Since then, I have asked so many people who have seen some form of dementia the same question: When did you know something was wrong?
“She could no longer put on the Chattayum Mundum (the traditional attire used by the Syrian Christian women of Kerala) by herself. It was something she had worn every day all her adult life.
“He stopped talking.”
“Initially my father thought it was a problem with his eye, and then he had nightmarish hallucinations. He was a doctor and was probably aware of what was happening.I could see the signs and tried to talk to him. He was furious with me. He was in total denial.”
**
Amma called me in panic one September night in 2019. “I am not at home. Your father is making me stay in someone else’s house. This is not my home. I want to go home. How can I live like this in someone’s home?”
I was dozing off and it took me a few seconds to return to our nightmarish new world.
I tried to ground her, hoping that some fading memory would light up.
“Amma… you are in your house. It’s a house you built, and a house you named. Look at the floor beneath you…. don’t you remember the story of those tiles?”
“Yes, I remember that house. But this isn’t that house. I am somewhere else. I want to leave…”
I tried to imagine what’s happening in her head. “How do you feel right now?”
“I feel like I am trapped in the middle of the sea. I can’t breathe and I can’t swim ashore either. I can’t even look at myself anymore.”
I spoke the words that I would repeat a lot during the next five years. “Don’t worry, Amma. I will take care of you as long as this goes on. Sorry, you have to go through this. But I have no answers or solutions. Just breathe.”
I thought about why dementia patients wander.
The home that she lived in for 30 years seemed unfamiliar and strange to my mother.
“Let’s go to our home,” she would say over the next few years.
“So where is our home?” I would ask. Sometimes, she would describe the house she lived in as a child. Sometimes an imaginary place.
Home was a place that existed in fragments somewhere within her.
All she wanted was a place to feel safe.
**
Words began to take new forms for my mother. She took words literally. When I told her that her granddaughter was sick with food poisoning, she shuddered. “But who poisoned her? What poison was it? Will she be okay?”
It took a while to convince her that my niece was only sick from something she ate and that she would be on her feet soon.
As her movements became limited, the obsession with picking up leaves waned. But preservation – a common tendency among dementia patients to repeatedly do an activity or get stuck with certain phrases or sounds – continued. “Amme…Vaava….” was a constant refrain. The words for mother and baby in Malayalam.
“I am scared,” she would repeat all day,
“What are you scared of, Amma?”
The answers varied.
“The roof is going to fall down on me.”
“I feel like I am possessed. Save me, please.”
“I am scared. I feel like everything is going to explode”
“I think I am going to die.”
None of these answers could be countered with logic or reason. So, we just did our best to comfort her momentarily and divert her.
The noisemaking went beyond words. There were days when she mumbled and grunted and muttered and times when she screamed and shrieked. The dignified, soft-spoken woman we knew began to swear like a sailor. The slightest attempt to move her or clean her could be met with the choicest of obscenities.
“Amma! When and where did you learn that word?”
Sometimes, she joined in as we laughed through our frustration and pain.
“Daughter of a bitch!”
“Well… I am your daughter!”
My mother lost words, but not language. She could understand and speak both English and Malayalam and smile at the lyrics of a favourite Raj Kapoor song.
We took every opportunity to celebrate the small things.
“She knows who we are. She can still eat on her own. She can debone a fish and shell a crab. She can walk around. So maybe these are the good days,” I wrote in 2020.
**
Most doctors gave us the standard response. “We can delay the symptoms with medicines, but we cannot cure the condition.”
Our current systems of hospital care rarely allow specialists enough time to offer lifestyle or practical advice. We were told to do tests and MRIs. The MRI results progressively looked like scenes from a horror movie. Twisted blood vessels. Missing pieces. Amma grew more reluctant to subject herself to the torture of an MRI machine.
Somewhere along the way, we took the decision not to do any tests that caused her pain and practically served no purpose. Yes, you see how rapid the deterioration is, but did it help with her care? No.
The question remained: How do we deal with the activities of daily life? How do we move her from point A to point B when she was forgetting the process of sitting and standing? How do we ensure she eats healthy, and how do we deal with incontinence?
The doctors gave generic advice. I don’t blame them. How do you deal with a disease whose symptoms vary drastically in different people?
On Facebook, I discovered a Vascular Dementia support group with about 20,000 caregivers from across the world. I got answers from faraway places to seemingly simple questions and deeper doubts that refused to go away: How do I cut her nails when she screams at the sight of a nail clipper? Was there anything I could have done to prevent her from getting this disease? Would an early test have helped?
I learned that no healthcare system is even close to perfect when it comes to dementia. The strong cultural debates about nursing home care versus home care come to naught when you put the patient at the centre of it. And for caregivers everywhere in the world, the agony of watching a loved one disappear and shrink is gut-wrenching, no matter where or what code you live by.
I spoke to people who had been in the same situation, and it brought home to me the many lenses through which we view suffering. Some didn’t want to speak because it was too painful. Some stayed away and some gave up life as they knew it to focus on caregiving.
“After observing my father with dementia, I realized hell is right here, on earth,” an entrepreneur told me.
I heard about a son’s struggle to stop his father from wandering during the Covid lockdown. He would get a friend pose as a police officer and guide the elderly man back home.
All of us struggled quietly, relentlessly to make life a little easier for our loved ones and ourselves.
And what of the people around us: the extended family and the circle of acquaintances that make up a life? My mother laid great emphasis on friendships, and her friends stood by her and comforted us. Among the larger social circle, there were those who behaved as if she had a contagious disease and stopped visiting.
There were others whose responses ranged from the ignorant to the downright cruel…
Why did she get it? Was it because she was quiet? (I almost say: Science has no answer yet. Extroverts get it. Presidents, professors and actors get it…Did you hear what happened to Robin Williams? Oh...never mind...”)
Why don’t you get her to drink coconut oil?
You need to find small children who can give her company. She’ll be cured.
Have you tried Ayurveda? Homeopathy?
I wonder what kind of karma causes diseases like these…
Whatever I end up with, I hope I don’t end up with a disease like this
How’s her depression now? Is she all better?
Depression, Dementia… all the same! In the early days, I would try and explain until I realised I was talking to a wall. The world has been so insensitive to conditions and diseases of the mind that they continue to be utterly ignorant. Maybe it’s superstition. Or maybe their fear of the disease is so great that they obliterate the person who is suffering.
**
I yearn for the past version of my mother. In my dreams, I search for her, and sometimes, I meet her, and I am so joyful until I wake up.
During the day, I try to draw strength from lessons I absorbed from my mother: Make way for love and laughter no matter how dire everything around is, stay grounded, enjoy conversations with friends, find solace in art, and whatever happens, be true to yourself.
The kitchen is the place where hidden emotions surface. When I miss who my mother used to be, I try to recreate the red fish curry I watched her do almost every evening. I am not an intuitive cook, but for once, there is no frantic rechecking of ingredients or cooking times. Memories of the smells around her guide me. I think about her grace, her cotton sarees, the earthern pots. I always get the curry wrong. The red isn’t right. Too little turmeric? Too much sauce? It never comes out right, and in some ways, that is a relief. The goal isn’t perfection here. Just a feeble attempt to be a part of happy evenings from the past. A tiny, quiet moment of intimacy before the world and its distractions catch up. Every colour, every texture, every smell is a stab of memory.
**
The Alzheimer’s and Related Disorders Society of India estimates that dementia affects around 7.4 per cent of Indians above 60. The number of patients is expected to rise from 8.8 million to 17 million by 2036.
Dementia is the slow disintegration of so many things -- experiences, memories, hard-held beliefs and physical capabilities. Each turn for the worse is a shock. We watched helplessly as the disease chipped off her abilities and sense of self. Some stages seemed like they would last forever and some, like her final eight weeks, were too short. She lost the ability to stand and sit on her own. She would forget to chew and swallow. I never thought I would miss the screaming and the volley of abuses she let loose on us. The loss of her voice was the hardest. A stormy seven years after the disease hit, she passed away peacefully at home after eating a bowl of baby food.
**
How do families express love? Is there a right way?
Ours isn’t a family of grand gestures. My mother’s love was a quiet and strong presence. I felt it as a soft blanket of touch, flavours and smells. A love that knew when I needed support even before I felt the need for it.
Dementia broke our hearts, but it also reshaped the way we loved. We found ourselves using words of reassurance and gratitude that we previously thought were redundant.
“You do know, don’t you, that your sisters and you are always in my thoughts?”
“Sometimes, Amma, I forget it will all never be the same again. That makes me cry. I love you. I hope I showed you how much I love you.”
A few months before she passed, my father fell ill. He woke up one afternoon in panic and told me about a bad dream he just had. My mother was in the next room. By then, she was frailer and would take hours to move a few steps. I went out to get some water. When I returned, I saw that my mother had walked unaided to his bedside. It had been months since she walked without our help or without us prompting her. She sat next to him, holding his hand. They soon dozed off in each other's arms.
To me, that miraculous scene would forever remain the definition of love. Two souls giving the other strength in the most impossible of circumstances.
The author can be reached at sarita.ravindranath@gmail.com.