My grandmother has dementia and has forgotten my unusual name.

• All my life, I’ve had mixed feelings about my unusual name.
• My grandmother has dementia and has forgotten my name, despite me visiting her regularly.
• I still have beautiful memories with her.

I’ve always had mixed feelings about having an unusual name. My name means “daughter of joy” and is the female version of my father’s name, Anand.

The word has three syllables and has to be repeated every time you meet someone. What I didn’t expect was that I had to teach my grandma how to pronounce the syllables.

When I was 16, my grandmother began forgetting things like turning off the stove and confusing sugar with salt. Eventually, she lost interest in reading Harlequin romance novels and watching Wheel of Fortune and Jeopardy back-to-back.

As the nightly news played in our living room, she stared off into the distance, the woman who had named me and raised me seemed to fade away, her silvery hair pulled back in an easy bun, her aged features thinning.

Dementia is never normal

An estimated 5 million people live with dementia, and the CDC predicts that number will reach 14 million by 2060. Dementia is not a specific disease, but a set of symptoms that can include loss of memory, language, cognition and problem-solving skills and interfere with daily life.

There are several causes of dementia, the most common being Alzheimer’s disease. Memory loss is one of the earliest symptoms of dementia and is often the first thing noticed by people other than the person suffering from it.

Although it is normal for people to become more forgetful as they age, the cognitive and mental decline seen in people with dementia is not a normal part of aging. Along with cognitive changes, family members may also notice psychological changes.

In my grandmother’s case, she seemed to lose interest in activities she once enjoyed. As her symptoms worsened, she became increasingly confused and agitated, and gave only one-word responses to questions.

I see my grandma every week

My mother was the youngest of seven children, but as a single mother of two, she had no sisters to help her care for my grandmother, and she eventually had to make the difficult decision to move her into a nursing home.

My mother visited my grandmother every day, and on weekends my sister and I accompanied her, and every time we saw her, she accepted my hugs.

But her touch was more like the warmth of a close acquaintance than of a child I’d known and loved since birth. I said, “Hello Mom. I’m your granddaughter, Nandini,” and she nodded and said, “Yes.”

It felt like our roles had been swapped. Whereas just a few years ago, Granny would ask me if I was hungry or wanted something to eat after school, now I was asking her what I had for breakfast and if I was warm enough in my cardigan.

The only time our conversation strayed from food and the weather was when she asked me about school. “Were you the best in your class?” she asked me one day.

My grandmother only had a second-grade education and wanted her children and grandchildren to succeed in school. I was reminded of this moment when I graduated from college with honors.

I was impressed that even though my mother no longer remembered my name, she never forgot the value of an education, and her desire for her children to further their education.

Despite it all, some memories remain intact

The weekend before my 17th birthday, my grandmother was in palliative care in hospital with pneumonia, and I went to visit her, knowing it would likely be the last time.

The same woman who greeted me with a hot meal each day after school was now refusing food and water, and I watched as my mother tried to cool my grandmother’s lips and gums with a pink oral swab.

“Hello Mum, it’s Nan,” I said. This time she didn’t see me or recognise my voice.

There was no sign of confusion or agitation on her face, instead she appeared eerily calm, gazing off into the distance.

I held her hand, and she reached out and cradled my head in her arms, as she had done so many times before. It didn’t matter if she remembered my name or that I was her granddaughter, all that mattered was that she was a mother comforting a child in distress.

What I remember most about my grandma

My grandmother was an expert cook, seamstress and gardener — the quintessential Trinidadian housewife. She planted plum trees that endured drought and hurricane-force winds.

Her skin and the coffee she drank every morning were warm amber, and I would come home from school to find her sitting in the rocking chair by the window.

She bought me a leopard print dress that I wore for every birthday and holiday, and when my father passed away, she became like a second mother to me.

She died the morning after my 17th birthday, and although sometimes it hurts to relive these memories, I have learned that grief is the price of loving someone and wishing the past had been different.

Nandini Maharaj is a freelance writer covering health, wellness, identity, and relationships. She has a Masters in Counseling and a PhD in Public Health.