Growing closer through dementia

In my family, we die at home. Maybe it’s a black thing, a combined distrust of white authority and fear of medical experimentation handed down from mother to daughter like an inheritance. Regardless of why, the effect is the same—generations of Hales women taking their final breaths in the dignity and comfort of their own homes.

In 2011, when my grandma’s early onset dementia had progressed beyond harmless incidents like calling the remote control ‘the clicker’ and into more dangerous episodes like getting on the bus and forgetting how to get back home, our family was given a choice that was no choice at all—put our matriarch into the hands of strangers, or make a way for her to spend whatever time she had left surrounded by love.

Of my grandma’s two daughters, only my Aunt Robyn was still alive, and she worked full-time. Within six months, I had moved in with my aunt and my cousin in Cleveland Heights. I took a hiatus from my job in St Louis to spend every minute I could with the most important person in my life. I never saw caregiving as a burden. To me, it was always a privilege.

The beginning

I’ve always been close to my grandma, but when my mother died suddenly when I was 19 it cemented our bond. I was the same age my grandma was when she lost her mother to cancer. If she could survive burying a mother and a child, I could keep going long enough so she wouldn’t have to bury a grandchild too.

In the beginning I was obsessed with giving her the best possible care out of sheer self-defense. If I could get her to eat three meals a day, if I could keep her mentally stimulated and physically active, then she wouldn’t die and I wouldn’t have to find another reason to live.

But somewhere along the way, it stopped being about me at all and started to be about this incredible woman.

Growing closer through dementia

Dementia is beautiful and terrible because victims actually re-visit their past. My grandma had told me stories about her childhood on the south side of Indianapolis, but it was the disease that put me next to her in a hot, cramped one-bedroom house with nine other people, not all of them relatives.

It was the disease that gave me a glimpse of the 7-year old girl who slept at the foot of a young couple’s bed at night.

“When the baby cries, I need to check and see she wet, give her somethin’ to eat, keep her quiet so her Momma and Daddy can sleep. That’s my job.”

I got to know her not just as my grandmother, but as a little girl, a college coed and a young lab tech, always reaching into the closet for her yellow lab coat.

Unlike her mother and brother, my grandma got to sleep in a bed, and she got paid two pennies a week. In her lucid moments I could ask her questions about the experiences she had shared while in reverie. I got to know her not just as my grandmother, but as a little girl, a college coed and a young lab tech, always reaching into the closet for her yellow lab coat.

I saw her as a lovestruck teen with a crush on a white boy at her newly desegregated high school. “We were just friends. It was all you could be back then,” she told me later.

And I got a close up view of her unhappy marriage to my grandfather. She often confused my cousin with her ex-husband Albert.

She told him what he could and couldn’t eat. “Don’t you eat those livers, Albert!” she told him one night as he helped himself to dinner. “You know Mama made it for that dog! You ought to be ashamed of yourself, eating the dog’s food.”

It’s not hard to see why they got divorced.

Sometimes, I saw the eligible divorcee she was later on. Whenever we had fried fish for dinner, grandma would smile flirtatiously and ask: “Did Mr. Green bring the fish?” For years, her neighbor Mr. Green neighbor would bring pounds of fresh-caught Lake Erie perch for grandma to fillet and cook. Despite her known dislike of perch, she would cook the entire batch and take half down to Mr. Green’s house “after the kids went to bed.”

Sometimes we forget that our parents and grandparents were just people trying to make their way in the world before they became our entire world. My grandma’s reveries showed me a woman who had hopes and fears, who cursed and grieved and made poor decisions, who struggled to live up to others’ expectations, who questioned societal rules, pushed boundaries and sometimes ran straight through them, just like me.

Yes, my grandmother was dying. But she lived.

The end

I knew the end was coming when I offered my grandmother a grilled cheese sandwich and she told me she might not have time for lunch.

“Why not?” I said, half expecting her to launch into a story about being late for basketball practice or needing to finish her “bell work” at school.

Instead she said: “Those men want me to come with them.” We were alone in the house.

“What men?” I asked sharply.

“You don’t see those two big men in the doorway?” she asked, incredulous.

I knew what she meant, but I wasn’t ready.

“No grandma, I can’t see them.” I said sadly. “And I want you to tell them to come back later. Like, months later.”

That night I cried and I prayed all night long, as if my love and faith could anchor her body, even as her spirit yearned to fly free.

The next day she told me Aunt Mary wanted her to bring her blue shoes with her when she came. My Great Aunt Mary had been dead since 1996.

That Saturday, May 4, 2013, my grandmother, Dorothy Mae Hales, slipped away quietly while I was making pancakes. Her brother and grandchildren were in the house. Her surviving daughter was holding her hand. She moved from love to love, and I hope when my time comes, I too will be that lucky.

Ajah Hales

Ajah Hales is a writer, social thinker and small business owner from Cleveland, Ohio. When she was little her mother asked her what she wanted to be when she grew up. Ajah replied: “A dictator.” You can read more of Ajah‘s work on Medium or find her on Twitter @AjahsWrite.