But before the end, in the long strange journey to the end, there is much that remains. If our brain empowers us with resolve and resilience, our hearts are the Petri dish for the soul we cannot see but only verify by the yearnings unbidden and unimagined that startle and salvage us. The brain is how we live; the heart is in the most metaphorical and figurative sense why we live. How else to explain that the deserted and desert-like brain recedes, and the heart and soul begin to blossom amidst the bleakness and despair of dementia?
“All that remains” is an assertion rather than a qualification, a confirmation announcing the persistent presence of all that does, somehow, remain. Acceptance remains, because dementia provides no oxygen for denial. The present moment remains, overlooked, brushed aside, until the present moment is literally the last possession of the dementia-mind. Laughter remains, God’s reward for not giving up. Conversation too, pieced together like puzzles that make all the sense the moment requires. These and even more are all that remain.
THE LAST CONVERSATION
BARI DIANE ADELMAN
My darling eighty-eight-year-old mother has had progressive dementia for a decade. She has lost her sight, hearing, and speech, and I miss her terribly. I miss her warmth, her wisdom, her wit.
Shortly before Mom lost her ability to speak, we had an important conversation.
The chat was truncated as a result of Mom’s limited cognitive abilities. Speaking coherently had grown increasingly difficult for her, and I was terrified that our ability to have any future dialogue was shrinking. Instinct was telling me this might be one of the last conversations we would ever have, and though it was rather basic, I felt an urge to record it.
The conversation took place while we were browsing through a family photo album. Mom kept asking me who the “strangers” in the photos were—strangers who included her husband, children, and grandchildren.
Mom turned to me and said, “Bari, something terrible is happening to me. This shouldn’t happen to a person.”
“You’re right,” I answered.
“I don’t want to be a burden,” she said.
I turned and looked her in the eye. “You’re not.”
“Where do I live? Who takes care of me?”
“You live in a wonderful assisted living facility, where you and Dad share an apartment.”
“But I don’t want to be a burden to him,” she insisted.
“You’re not, Mom. Dad loves you and wants to be there with you. And please don’t worry—there are lots of people who help Dad. They serve you three meals a day and do all the laundry and chores.”
“But I don’t want to be a burden,” she insisted.
“Dad loves you, Mom. We all love you. This is what families do. We take care of each other.”
The words were simple, but for years now, I have turned to them many times over. They sustain me. They fill a void.
“I don’t want to be a burden.” This was the mantra of Mom’s life. She prided herself on being strong, independent, and self-sufficient. Highly educated, Mom had successfully combined career and motherhood well before that was fashionable, first as a high school teacher, then school librarian, and ultimately college advisor. She wanted to add value to the world, not be a drain. With these words, Mom was telling me she feared her worst nightmare was befalling her.
Even more significantly, this was the one and only time Mom acknowledged to me that she knew something was wrong with her. Until then, she had been either unable or unwilling to do so. I had tried to initiate gentle conversation about her decline, several times in fact, but Mom always deflected the conversation, and I felt I had to honor what was denial or willful ignorance on her part—though perhaps it was a complete lack of awareness.
This was the first time since Mom had gotten sick that she seemed able to confront the fact that something terrible was happening to her. Something she didn’t understand but despaired of. She had seen this happen to her own mother and had lived with the fear it would happen to her. Here was Mom, for the very first time, sharing her fear and pain with me. There was urgency in her voice and tone as she reached out with the only words she could find. I felt her despair.
But how to respond? In the few seconds available to come up with a reply, my subconscious mind kicked in instinctively. I desperately wanted to validate Mom’s feelings and soothe her soul. I couldn’t find adequate words but tried to assure her I was there for her and let her know that we, her family, didn’t feel it was a burden to care for her. I know the love and intention behind my words were pure. And I believe she could feel that.
So many years have passed since that moment. I visit Mom at her nursing home three times a week. I hug her, kiss her cheek, and whisper “I love you” in her ear each and every time. But I have lost my mother.
When my pain is at its most raw, my memory of that last conversation sustains me. I am grateful I documented Mom’s words and take comfort in knowing that in those few moments, I did everything I could to offer her a sense of relief and calm. I want her to be at peace. To know how much she was, and is, appreciated and loved. That she could never be a burden.
DEVIL’S ALLEY
TINA JENKINS BELL
I was trapped in a devil’s alley, a place without exits or windows, after losing my brother Champ to idiopathic pulmonary fibrosis (IPF) and seeing Mama’s will to fight her dementia bottom out.
It was 5:00 on a Saturday morning. Every light was on in my home, except for the bedrooms where my boys slept, completely oblivious to my desperation. Mama’s neighbor, Ms. Tolliver, had called to alert us Mama was “in the wind” again and had apparently boarded a Western Avenue bus in front of her building around 4:00 a.m.
My husband, Earl, worried aloud about me scouring Chicago streets in search of my mother before sunrise, but he knew I needed to act. Mama’s doctor was aware of her tendency to flee and advised us to institutionalize her for her good . . . and ours.
“She needs twenty-four-hour nursing care. Frankly, when I’m her age, I’ve directed my children to put me in a home and forget I’m there. Dementia ravages the person who has it and their caretakers, too,” Dr. Assad had said.
I dressed quickly and went to my Jeep to warm the engine. The sky emptied snow from above, and snowflakes cartwheeled across the car’s hood. Meanwhile, I waited for my sister Cynthia, who lived with us after being displaced from a long-time job, and wondered why God hadn’t noticed I’d reached my limit.
Minutes later, Cynthia emerged, holding a cup in one hand and a set of keys in the other. She flopped in the passenger’s seat.
“Damn, when is this going to end?”
I blew warm air into my bare hands before putting gloves on and maneuvering the car into drive. “I don’t know.”
We both sighed as an apprehensive quiet permeated the car. I focused on the road, watching landmarks, from St. Rita High School just past 79th Street to Gage Park’s Gothic-style fieldhouse, glide by while Cynthia glanced out of the passenger’s window. “You think we might not find her this time?”
“Nope,” I said. “We’ll find her, hopefully before the police.” From the side of my eye, I saw Cynthia nod. Even with a seatbelt on, her shoulders drooped. She looked as tired as I felt. Neither of us had been getting much sleep since Champ’s death, which was devastating. He was Mama’s only son and the closest resemblance to the husband she’d lost forty-six years prior when I was just three months old. She loved him to no end, making him our responsibility to protect. But none of us could beat IPF, so Mama gave in to a world where her beloveds—Champ, her mother, her grandfather, and my dad—still lived.
Before Mama’s shift from the present, she was a reader and letter writer with a strong head for managing finances. When she casually asked me one day to balance her checkbook, I was flabbergasted. She prided herself in doing most things on her own, particularly “money” things. Then, a careful survey revealed she’d overpaid Visa by $5,000. Checks began to bounce shortly after that. L
ater, I would get a call from the office manager at Mama’s former apartment building. She hadn’t paid her rent.
“You are talking about Helen Jenkins,” I checked.
“I’m talking about Helen,” Mrs. Davis said, as her usual crisp voice began to mellow. “It’s not her fault. She was embarrassed to admit con artists picked her up at the Metro Grocery Store and . . . well, just ask her.”
I ripped out a check for $500 and handed it to Ms. Davis. “I got this.”
“I know you do, honey. Helen is lucky to have y’all. God bless, okay?” I nodded and took the elevator to Mama’s fifth floor apartment, where she told me the rest of the story.
“They needed me to go the currency exchange to get some more money. But I had to cash my check and give them my money first.” Mama’s eyes enlarged and teared with recognition behind her black-rimmed glasses. “I don’t know what I was thinking.”
I concurred. Mama didn’t usually trust anyone, even her own children. She’d have never gotten into the car with strangers, but I was her child and couldn’t admonish her. I empathized instead. “Those rat bastards had better be sure I don’t catch their asses.”
This made her happy. Though we were cultured, she brought us up with Marine mentalities. We’d kick behinds for family.
Then out of nowhere came this tiny voice I never would have associated with my mom. “Don’t let them put me away, like they did my mama.”
My grandmother had been institutionalized in the notorious Mississippi State Hospital for the Insane when my mother was ten years old. Traumatized by the experience, Mama made us promise to protect her independence, no matter what. No nursing homes. No hospitals for seniors with issues. We tried to comply, so after the con artist incident, we’d moved her to a senior citizen apartment building on 45th and Western, closer to my home.
Proximity didn’t matter; Mama easily circumvented our monitoring efforts when a goal pressed her like the one that led her to rise at 4:00 a.m. to catch a bus.
Cynthia and I scrutinized buses and sidewalks for four hours before returning to Mama’s apartment. We found her cooking a Kwanzaa dinner for Champ. It was March; Champ had been gone for a month; and Kwanzaa follows Christmas.
“I needed a few things to complete Champ’s dinner,” she said after being bombarded with our questions about her whereabouts.
Numb, Cynthia and I glanced at each other; our eyes became wells of unfallen tears as we struggled once more with nudging Mama from her demented state back into reality and forcing her to relive her boy’s death. At least for that day, we decided to quell our own grief and postpone another round of the same heartbreak for Mama.
Playing along, Cynthia said, “Are those turnip greens I smell?”
With a hand on her hip and the other stirring something in a tall pot, Mama smiled,
“Yes. Champ’s favorite.”
I joined the charade. “Well, they may be Champ’s favorite, but I love them, too. Where’s the Tupperware?”
Behind us, the sun, a ball of yellow, polished silver, shone through Mama’s floor-to-ceiling windows, but neither Cynthia nor I could bask in it. Instead, we watched Mama move purposefully in her kitchen, where she’d always found comfort, cooking turkey, greens, black-eyed peas, macaroni and cheese, dinner rolls, and sweet potato pies. We had completed our mission. Mama was home, happy and safe for now. Still, there were crooks and turns in the devil’s alley, and though Mama was where we could see her today, the chase could very well be on again tomorrow.
MOTHER’S MEMORIES
DANIELLE BELTON
Who is the keeper of your mother’s memories when she can’t remember them?
Now, are you someone I’m supposed to know?
She’s nice enough on the phone. Pleasant, even. So pleasant that it could be normal if you wanted to pretend. But then, she’s always been nice, always liked to talk, even if she had nothing to say. This was no different, although these days she has good days and bad days. Before my father put her on the phone, I asked if she was in a good mood. Today was one of the good days, he said, so he gave my mother the phone, and there she was.
Just happy to be here. Laughing at nothing.
“Hi, Mommy,” I said, like I used to say it when I was little. High-pitched and chipper. Youthful and hopeful.
“Hi, Mommy,” she chirped back to me, parroting my tone.
That wasn’t the right response. My heart fell. It was a “good” day, but she’d gotten worse. Just a few months ago, she could still recognize my voice, sometimes. But now the memory of my voice, of me, was finally gone.
“So you’re one of the people I’m supposed to know?” she said, chuckling.
“This is Danielle,” I said.
“Danielle,” she repeated to me, as if she were thinking about it.
“Your daughter,” I said.
Our conversation was brief. She laughed, a lot, at nothing in particular. When I told her work was good, she laughed. When I told I was in good health and the weather was nice, she laughed. She asked me where I was, and I told her Washington, DC; she laughed.
“Oh,” she said, laughing. “Well, I’m sure you’re busy, and I don’t want to keep you.”
My mother is still here with us, but her mind left us long ago. Dementia has robbed her of her memories and personality, leaving behind a woman who looks exactly like my mother and sounds exactly like my mother but is no longer my mother. She’s also no longer my father’s wife, her mother’s daughter, a sister to her many siblings, a niece to her surviving aunt and uncle, a grandmother to her only grandchild, or any of the things that made her just her, that made her Deloris—or, as her family called her, Babyray, the person we all loved.
It’s a testament to how good she was as a mother, wife, daughter, sister, niece, grandmother, and friend that everyone still calls, everyone still visits, everyone still wants to see her even though she couldn’t care less who we all are. My father and sisters look after her back in St. Louis while I’m just a voice on a phone, hiding from everything.
My father tells me, repeatedly, to live my life because that’s what he wants, that’s what she would have wanted if she were still herself. He has been telling me this since 2009, when I left home for the second time in my life to move to DC. Even though she wasn’t sick then, I felt bad about leaving my parents because they were getting older. I wanted to spend as much time with them as I could. I wanted to take care of them. But there also wasn’t any work for me as a writer in St. Louis.
So I left.
When my friend Toya passed away almost two years ago from colon cancer, the thing I lamented the most was that when she went, she took all her memories with her. All the things that made her who she was were lost to the world. It’s the same with my mother, only she lives on, oblivious to what she’s lost, and to what she continues to lose every day.
Who is the keeper of your mother’s memories when she can’t remember them?
My mother comes to me in my dreams. In the dreams she is always leaving me, us, our family, and I’m angry with her because she is cold and unforgiving. But at least in the dreams she is herself. Not the side of her that I liked, but she is “Deloris.” In the last dream I had about her, she was divorcing my father, to whom she’s been married for more than forty years. She was youthful-looking, clad in a stylish gold dress, and her curly hair was immaculately laid. She looked beautiful—cold and distant, but beautiful. And in the dream, she yelled at me the way she used to when I was a teenager, when we used to get into these terrible fights where she would badger me until I was in tears, utterly destroyed. In the dream, I told her how angry I was at her for leaving us, but it made no difference. She was still going.
I honestly would have preferred a world where my mother still possessed her mind, even if it was only the side of her that I didn’t like. I wish she had just abandoned all of us like in my dream because the greatest tragedy of losing her, of dementia, is that she is lost to herself. If she’d just been
like how she was in my dream, she’d still be Deloris and all the things that made her her.
Deloris, who liked arguing politics and was once labeled a “militant” parent because she pushed so hard for the better education of black children in her neighborhood.
Deloris, who was talkative, outgoing, and friendly, but at her core, still a shy Southern girl from Arkansas.
Deloris, who liked to be number one in your heart even as she was pissing you off.
Deloris, who never said a curse word but whose favorite comedian was Richard Pryor and who loved the raunchiest, dirtiest blues music known to mankind.
Deloris, who wore high heels everywhere and wore makeup to everything, who was a voracious reader and thinker, who loved children, holidays, pecans, and shopping malls, who talked to everyone as if they were her best friend even if she had no idea who they were.
Today, to my mother, my sisters and I are kind strangers. Our father is “that guy.” Her grandson is some “handsome young boy.” She forgets to call her mother, who is dealing with the horror and indignity of having your own child forget you while you’re still living. My sisters, father, and I try to find humor where we can. We’ve all come to accept what has become of her in our own ways. Mother’s Day is still Mother’s Day, even if she’s forgotten that she was a mother. We remember for her. Remind her. Love her. We are the keepers of her memories now. We’re the ones who tell her story.
We’re the ones who celebrate her while she’s still here, even though she’s gone.
THE OTHER SIDE OF HERE
Us Against Alzheimer's Page 8