Dementia & Alzheimer’s – The Litany
A conversation with dementia
by Brian Anglin
They say you can’t judge a book by its cover, and yet every single article I’ve ever read about publishing emphatically asserts the importance of having a strong, professional cover design for your book. Here at Brown Bag Publishing, we have one thing to say about that:
Here at Brown Bag Publishing, we are writers and readers, and as writers and readers, we are generally convinced that the most important part of a book is what’s on the inside. The story, the words, the ideas. These are the things that fuel our imaginations, stir our hearts, and remind us of who we are as human beings.
A great book cover never changed the world.
So, with that in mind, you might notice that our books here at Brown Bag Publishing are noticeably boring on the outside. We sincerely hope they make up for it with what’s inside. If they don’t, at least no one will claim our covers were misleading.
And, as always, this book you are reading with the boring cover is dedicated to people who love a good story.
Publisher’s note: Of course, if we sell a zillion books and find ourselves in a position where we have stacks of cash, we reserve the right to abandon our commitment to content and hire someone clever to design sharp, artistic, commercially viable book covers. Because, let’s face it, a cool book cover can be a beautiful, creative expression of its own that speaks to our souls and alludes to the adventure that waits inside. And who reads the insides anyways?
My mom had stopped screaming.
She had stopped slamming her brittle, twisted fists against the walls and doors and kitchen cabinets.
She had silenced the guttural wails of anger and frustration that have echoed in my heart ever since her dementia took over our lives nearly a year ago today.
She had run out of greeting cards and old love letters to tear up, crumple, rend and hurl at the floor.
In fact, she had stopped throwing things altogether.
The uncontrolled suffering had finally stopped.
Now, my mother was crying softly.
Brilliant blue eyes leaking a steady stream of tears onto the table between us.
I knew what was coming.
“Why am I still alive?” she asks.
No. She pleads. She is desperate for an answer.
I don’t have one.
The truth is I don’t know anymore.
So many of the stories about dementia, so many of my stories about dementia, are too simple to help in moments like these. Sure, they are heartfelt and true, but they are also trite. They create a make-believe balance between the tragic, unbearable loss of a person’s soul and a few well-placed, poignant moments of deep human connection – moments of deep human connection that are supposed to make the unbearable loss a little more bearable.
But there is no balance. It is a lie. A desperate lie.
The truth is unbearable loss is just that – unbearable.
I take my mother’s hand in mine. I search for her behind the veil of tears, and I find another lie.
“You are alive for me,” I say, choosing simple words and simple thoughts I hope she will understand. “You are here to take care of me.”
And somewhere in that lie, I find a moment of truth. My mother’s suffering has in fact given my life a purpose and depth that had been lacking before her diagnosis. My mother’s agony has inspired my writing, my compassion, my humanity, my understanding of life. My mother’s fear has given me courage. Her fading memories have chronicled my own history. The more she loses, the more I gain. Her growing emptiness fills me.
The truth is there. But the truth is too terrible, too ugly, to say out loud.
Instead, I tell her I love her.
“I am a nothing.”
Without words, without memories, without understanding, what is left?
I close my eyes and imagine who I would be if I could no longer write, no longer read, no longer talk. I am a writer. I am a storyteller. I am a voice.
Without words, I would no longer be myself. I would be dead.
I would make sure of it.
But my mom is not as selfish as me. She was a teacher, and she has already spent her life living for others. For almost 50 years, my mother’s classroom was a sanctuary where small people learned to celebrate each other and love themselves. In the cold, clinical world of standardized testing and zero tolerance educational dictates, my mom created one small corner of the universe where students could learn and grow and explore without fear or inhibition. Under my mother’s watchful protection and encouragement, mistakes were welcomed and encouraged, and success was measured in gumballs and laughter.
For half a century, Ms. Pierce’s classroom was a place where kids could be kids.
For generations of families, Ms. Pierce’s classroom was a place of love.
There is no doubt about it. My mom’s life was defined by the thousands of lives she touched one lesson at a time.
But now, my mom doesn’t know why strangers are always hugging her in the grocery store. She can’t imagine why someone would walk up to her out of the blue and introduce their children to her. She doesn’t realize that the smiles randomly greeting her in public are echoes of her own love from years before.
No. My mom is not a nothing. She is a dance of joy. She is the perfect word in the perfect sentence. She is a masterpiece.
But the answer I give her is a pale substitute for the brilliance of her life’s work and passion.
“Mom, you are not nothing,” I say. “You are my mom.”
But at least that is something she still remembers.
“I am so ugly,” she cries. “Look at me! I don’t want people to see me like this.”
She is talking about her friends.
She is talking about her brother.
She is talking about her daughter.
She is talking about her grandchildren.
She is talking about the people who love her.
Every phone call, every letter, every visit, every random fruit basket she receives makes her angry. They are painful reminders of who she used to be and what she has become. Everything that once connected her to the world amplifies how desperate and alone she is now. The past hurts, and as a result, she has no present.
The only people allowed in my mom’s life are me and the three women who help take care of her.
“I hate them. I don’t want them in my house. All they want is money.”
So, my mom hides in her bed until they leave.
“They are everything I am not.”
Young. Pretty. Strong. Smart. Compassionate. Loving.
These women are who they are, in part, thanks to my mom – and women like my mom.
At this stage in her life, there’s no point in denying it. My mother is 81 years old, and without a shadow of a doubt, she loved sweets every single one of the days. So, in the 1950s, when my mom was hired to work at the Woolworth’s soda fountain and candy counter in Greensboro, NY, it was a dream come true.
In case you were wondering, the answer is yes. That Woolworth’s.
The same Woolworth’s that refused to serve black people at their lunch counter. The same Woolworth’s that hosted the famous sit-in that launched the civil rights movement. Yes. It was that same Woolworth’s where, a few years earlier, a tall, gangly teen-age girl was hired to dish out ice cream and serve frosty coca-colas to the public.
Of course, it turns out my mom was oblivious to the civil rights movement that was coming to a boil in her own backyard. At my mom’s soda counter, it didn’t matter what color your skin was. Everyone was served. Everyone was a fellow candy lover.
My mom told me her bosses gave her a stern talking to, but she did not change.
That was how she rolled.
She lived on her own terms.
“I am not a person. I want to be a person. I used to be a person.”
She has forgotten who she is, so I try to help her remember.
My mom was a student, a teacher, a pioneer, a hero, a woman.
When other women in the Post-War Era went to college to find husbands, my mom went because she loved to learn. And thanks to that education, she spent her life building a career that expressed her passion and paid the bills.
My mom was a human declaration, a humble inspiration.
Even when it broke her heart.
Early in my mom’s marriage, she discovered she could not bear children. So she adopted three children, claimed them as her own, and redefined what it meant to be a woman and a mother.
And then she defined what it meant to be a single mother.
When my father left my mother in the early 1970s, divorced women were shunned and ostracized – especially in our small, conservative, rural, farming community in Upstate New York. In fact, when their separation was made public, my parents became the center of a scandal. You see, my father was the local pastor, he served on the planning board, and he was the best golfer for miles around. My mother, on the other hand, was only a small-town elementary school teacher who didn’t really follow the rules.
To avoid embarrassment on everyone’s part, the community leaders asked my mom to leave the church.
And she redefined her faith.
My dad and his girlfriend moved on to another town to create a new life, but my mom stayed with her children in the community that did not want her. For years, she taught their kids and shouldered the public shame of her failed marriage. For years, she scraped out an existence and a dignity that defied the common assumptions of the people who judged her.
For years, my mom walked alone.
“Why did God make me like this?”
And then, when more than half of the women in our community all of a sudden shared my mother’s curse of abandonment, my mother opened her arms. She became a friend. She became a mentor. She became a different kind of teacher, and the broken women who once ridiculed my mom and whispered behind her back found it a little bit easier to live strong and independent lives as single women and single mothers.
That is who my mom was. That is what is being lost.
And whatever women are today, it is because of women like my mom who followed their hearts and cleared lonely paths of dignity.
“I don’t want to live.”
But today, my mom is walking a different path. Today, my mother will spend most of the day curled up in a fetal position in her bed crying.
I will sit on the bed next to her and rub her back.
Wishing that my listening could give her life meaning.
But it doesn’t.
“I am ruining your life. You would be so much better off if I would just die.”
It is a hard truth.
I dream of the day I’m released from this death sentence. I will sell my house. I will travel. I will lock myself in a room and write until I run out of words. I will do all the things I dream about doing while I sit in the rocking chair by my mother’s bed and wait for her to fall asleep, while my mom is slamming her hands against the wall, while my mom is begging for meaning, while my mom is begging for the end.
I dream of that day.
But I hope it never comes.
When it comes, my mom will be dead.
And I will miss her suffering.
That is a much, much harder truth.
“I have lost so much. All I have left is fear and ugliness.”
But I am not enough to fill the gaping holes in her rotting brain.
“I want to die! I want to die! I want to die!”
I can no longer look her in the eye.
I don’t want to see what she sees.
I am a coward.
“Why don’t you just kill me?”
I say nothing.
And there is no hope or healing in the silence.