"Will help to dispel myths about Alzheimer’s and help people who have no experience with the disease." The Niagara Gazette
Voices of Alzheimer's: The Healing Companion: Stories for Courage, Comfort and Strengthby The Healing Project
Written by those touched by the disease, this collection of more than 50 stories recounted by the spouses, victims, caregivers, friends, and family members provides a look at their journeys and serve as a companion to those currently struggling to cope with Alzheimer’s. The contributors write with candor, clarity, and humor about their experiences with
Written by those touched by the disease, this collection of more than 50 stories recounted by the spouses, victims, caregivers, friends, and family members provides a look at their journeys and serve as a companion to those currently struggling to cope with Alzheimer’s. The contributors write with candor, clarity, and humor about their experiences with the disease, providing insight and strategies for living with the Alzheimer’s patient and sharing about the positive effect the experience can have on those affected. These essays illustrate the indomitable strength of spirit of those whose lives are irrevocably changed in the face of heart-wrenching adversity.
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Voices of Alzheimer's
The Healing Companion: Stories for Courage, Comfort and Strength
By Richard Day Gore
LaChance Publishing LLCCopyright © 2007 LaChance Publishing LLC
All rights reserved.
* * *
Letter to Self
So far, you've been taking care of your mother for a year and a half. You've stuck it out through crazy times, angry times, tender times, through hospital visits and home health visits and while everyone else comes and goes, you've stayed. You haven't had a vacation and no more than two days away this whole time.
I know you: I know that when your mother dies, you're going to feel guilty. You're going to think that you should have been kinder, not in a rush, that you should have done more with her, taken her more places, insisted the kids be nicer. I know you're going to miss her and wish that a million things had been different.
I want you to know you did the best you could. You remained faithful. You grappled with every decision. You let her into your life and your home, you and your family did what most people wouldn't even have considered doing, much less done. People aren't perfect, and if they try to be, then they're not real. We're not supposed to get it all right. Remember, you had to balance this with being a wife and mother. It's only natural to want to move forward and be more interested in your children — in those who are living. That's how the human race survives.
Remember, her emotions were always on an ever-widening pendulum, and Alzheimer's took them to frightening heights and devastating lows. You learned as a child that you couldn't trust her with your heart, although you kept trying. It just wasn't ever possible. That's okay. You know she loved you. And you loved her.
So go ... love your children. Love your husband. Live life. Learn and grow and help others. Let it go.
Remember all the kindnesses — how Phillip built her apartment and put up her pictures, whatnots and books, how you tried to make it as much like home as you could, even before you did your own home. Remember stopping just to buy Klondike Bars for her. Remember the hot washcloths and how good she said they felt. Remember kissing her goodnight on her forehead, holding hands in the car and how much she loved getting her toes done. Remember how much she made you laugh and cry and want to scream.
You always knew you were alive with her. Remember.
Letter to Mother
I never wanted it to turn out this way. You, lost in confusion; me, overwhelmed and not knowing how to reach you. When you moved in with us, I was naïve enough to envision us sitting by the river, me holding your hand, you nestled under a lap blanket, and the two of us sharing memories of my childhood and your childhood. Somewhere in this idyllic dream, you'd doze. I'd feel the pressure of your hand loosen and I'd know you were gone. I would kiss your forehead and whisper, "I love you," as you began your journey home.
A fairy tale, I know.
The reality is that I tiptoe into your room each morning and hold my breath, watching for the rise of your chest. Not that I want you to die; rather I fear that you have. Your life seems futile. Your days consist of not much more than a series of meaningless actions and reactions. Are you now more driven by instinct? Do hunger and thirst and a need to be covered up and warm rule you in your wordless world? Am I trying to decide if your life is more or less valuable than mine? Who am I to say? Does this sound cruel? I don't mean for it to.
I wake each morning to view the remnants of your destructive night. I pick up the nightstand, the telephone that is no longer plugged in. There's a mound of clothes on the end of your bed that you've taken off the hangers. More work for me. You've taken everything off. Your skin is as white as the whole milk you drink, your eyes remain closed, shunning this world.
I thought you'd be different. I thought I'd be different. I didn't expect this. I miss you. I miss what little we had. I miss your humor, your laughter. You still laugh sometimes....
Integrity is what you do when no one's looking. I wonder how I measure up. It's not that I do cruel things — it's that I don't seem to be able to relax, to sit down with you, talk, read the Bible to you. I'm scared so I just keep on my feet. I want to help you make a scrapbook, watch some old TV show, anything that brings you a bit of pleasure. But it's too late. Those things no longer mean anything to you. Each day passes and my family needs me, but you need me too. I want to write, go for a walk, clean out the refrigerator, take a bath, anything to avoid you.
I haven't put you in diapers yet. You wet everything, and yet at least you still try to use the potty chair. I just can't do that to you — or me. I'm afraid the diapers will give you permission to give up. I know that day is coming, and I'm helpless to stop it, just another step in your descending world.
I guess what I resent the most is the endlessness of the situation. It's easy to be kind, loving and caring when there's a cut-off date. Cancer often makes people valiant. Families rally around loved ones and last wishes get fulfilled; but this just seems to run into oblivion. I fear the possibility of years of your existence, staring off into space, randomly screaming while I perform the duties of diaper changes, sheet and night gown changes, wondering why.
I tell you I love you, especially at night. I try not to let a night go by without telling you. If you could hear me, understand me, step back to see this whole picture of our lives, I think you'd be proud of me, of us. We've made a good family. I love you still. I love that you loved me. I love that I had a mother.CHAPTER 2
* * *
Big Dan was my father, and although several inches shorter than I am, he was a man whose shoes were hard to fill. He had a Master's Degree in history from Howard University, earned the hard way, a benefit of being a WWII vet. He never ever talked about the war, but he did talk about social justice. His degree was in African American studies, not really a program offered in those days; he developed the interest on his own during and after college. Our house, unlike those of my friends, was filled with books by African American scholars and Big Dan filled his sons with the knowledge he learned. He didn't stop his teaching with us; he also ran a neighborhood youth corps project in Harlem, where he taught our history to both the "disadvantaged kids" and the counselors.
He was a civil rights activist, protesting daily in New York and around the country the injustices blacks faced in everyday life in America. Picket lines, sit-ins, arrests and civil disobedience were his tools, and my brother Russell and I watched and participated in the actions that formed our lives and which became his legacy.
Several unpublished novels and scores of poems were in closets and on shelves at home. Big Dan would whip a poem on us in a minute. "Sit down boy, and listen to this one," he'd say, "It's called 'Black Man Behind the Shades'." Poetry about who we were and who he was. His poem 'Legacy' said it all:
This much I leave behind –
three fine sons,
and a bottle of wine
I hope my sons are understood,
and my bottle of wine,
will be good.
I hope that when I am dead and gone,
the love I feel for them
will go on.
I hope that I am not misunderstood,
but a good bottle of wine,
gives life zest.
And my sons,
will provide the rest!
When I turned fifteen we started fighting about revolution, drugs, my friends, the way I dressed, almost everything. I left his household when I was sixteen, after a battle royal at the front door on my way to school. Big Dan, the man I watched place his life on the line countless times for what he believed in, would not let me out of the house with an American Flag sewn to the seat of my pants, to be bused to school in an all-white neighborhood. Blows were exchanged. He lost a tooth and I lit out of the door with the flag half ripped off and dangling from my butt. I stayed gone for two days and when I finally came back home, I packed and moved in with my grandmother, who lived two miles and a world away.
Still, Big Dan got me through the hard times, paid for New York University, paid for lawyers when I got busted for drugs at school and made the visits upstate when my education was interrupted by my eighteen-month residency in a New York State correctional facility. He made that trip almost every week. He fought hard to get me back into NYU afterwards, and succeeded: he was teaching Black History at PACE University at the time and the dean of the NYU School of Social Work extended a professional courtesy (after much begging and pleading on my father's part) to Big Dan.
There are so very many instances of this man's impact on my life and his impact on the other two Simmons boys, both of whom grew to be famous beyond any of our wildest dreams. After our parents split, Dad raised Joey (rapper Reverend Run of Run-DMC) for the next few years on his own until he remarried, to Shirley Ann, the mother of my best friend, Chris.
"Raising A Son Alone"
I now have a softer view of you
It took courage to do what you wanted to
At fist I considered it unkind
But thanks for leaving the kid behind.
We have grown fonder of each other
Since I began the dual role as father and mother.
We talk to each other a great deal more
Than we did as father and son before.
We are concerned with each other's health
What we have found is more than wealth.
We have the text book relationship
The corner boys would call it, 'hip.'
One night when I had a strange nightmare
He was there to show me that he cared.
He can cook, and so can I
I like to broil – he likes to fry.
Every now and then we disagree
But no one's perfect – not even me.
Some young girl is going to get lucky on day
And take my number three son away.
I will take it in stride because I understand
Every girl wants a fine young man.
In the end, it was Shirley and Chris who would have to tell me how Big Dan was doing. It was in 1998 when Shirley told me that Dad was starting to forget things. They were living in Florida. The pace was a lot slower there, so she shuffled it off to age and his not being as active as he used to be. But in truth, the forgetting had begun. It showed its face in small things: thinking he had to do something he'd already done; going shopping and returning with the wrong items. He'd compensate, cover his tracks, and not let on or get angry about the confusion and forgetting. At the same time, his physical health took a turn for the worse. He'd begun to stiffen; arthritis along with inactivity put him on the sidelines. I began to notice how my daily call to him in Florida got passed off to Shirley after a few brief remarks by Dad. "Hey man, everything fine; talk to Shirley." Tests confirmed our fears. Big Dan had Alzheimer's.
Now came the scramble for the newest, the best, the folk medicines to ward off the coming plague. Dad and Shirley moved to Atlanta, to live with my best friend-turned-stepbrother, Chris, and his wife Rhonda. They created a basement apartment, where Dad began to retreat into his own world, made up of old westerns and calling for Shirley (loud) every five minutes. As the Alzheimer's worsened, Big Dan got surly and demanding. Coupled with the atrophy of his limbs, he retreated to his bed or the lounge chair, where Alan Ladd killed Jack Palance in "Shane," day in and day out. As Dad's world narrowed, so did the world of those around him. In that household everyone's primary function became taking care of Big Dan. Now his primary caregiver, Chris had to leave his job; Big Dan became a full time job for him. Russell paid Chris a salary, but no amount of money could match the care and love that Chris gave Dad. Chris had known my father since he and I were in the second grade together. He too had listened all those years to Big Dan's poetry and philosophy. Long before Big Dan and Shirley married, Chris had become our fourth brother.
Dad was at his best when out for a drive with Chris. That's when he remembered stuff: old friends, old stories, places he'd been, and every so often he'd surprise us with flashes of his old brilliance, his humor, his wit and his sarcasm. No longer able to walk, he was chauffeured about in a wheelchair, and got around the house very slowly with a walker. I think what hurt me the most about his condition was when his confusion became obvious and he would hide his embarrassment with anger and silence. He didn't want the world to know that he was failing and I didn't know how to let him know that it was all right. That we were all right. That we loved him and wouldn't let him go. I wanted him to know that he had done a fine job, had been a stand up man, a good father, husband and friend. It was hard finding those words because as his fear and anger increased, so did mine. I wanted to rage at the disease and I wanted to fix him. I wanted to hide and I wanted my daddy back to read me poetry and teach me how to be less selfish, more confident and a better man. But instead I settled for "Hey man, I'm doing fine."
It took a lot to confront this every day, even if only by phone. I'd breathe deep before I called, knowing that I'd only get the "Hey man, I'm fine" before he'd pass the phone to Shirley. Sometimes I would hear him wailing unintelligible sounds in the background, and I'd steal myself a memory — something he'd said in some fight we had, in some poem he wrote in an intimate moment — when all I needed to do to be in his presence was to think of those things he had given to me.
In late 2004 we made a family trip to Jamaica, West Indies. He seemed happy but mostly hid in silence. But his eyes shined. I cried and he smiled during that trip as I sat alone with Big Dan on the balcony of his room and we watched the ocean. We didn't say much but as I sat in his presence I felt so much like the little boy who held his hand while we walked the picket line together. Here sat a great man wrapped in silence, watching the waves turn back on themselves, and for some reason I became alright with where he was and didn't have to retreat into memories of who he had been.
Big Dan died on June 12, 2006. I read one of his poems at his funeral.CHAPTER 3
The Stolen Goodbye
* * *
As I put the hot oil treatment on my head, the smell envelopes me. I am transported back to my parents' bathroom and the bottle of Aramis cologne that sat by my father's sink. It is the same smell. I go and buy a bottle of Aramis. I put a dab on my father's red flannel shirt that I have kept all these years. I breathe in deeply, and I cry.
My father is dying. He is in the final stages of Alzheimer's Disease. During his last stay in the hospital, my older sister and I went to see him. We took turns in bouts of crying. Different things set us off. For her, it was the shock of seeing him looking so old and frail. It wasn't our father; it was an old man. The bruises on his hand were shades of red and purple and looked painful. His skin was paper thin, scaly like a reptile. He was unkempt; I think this is what bothered my sister the most. His normally short-clipped hair and groomed eyebrows were wild and frightening. His breath smelled horrendous — something our father never would have allowed. It was difficult to reconcile this man with the image we both had of our father.
Excerpted from Voices of Alzheimer's by Richard Day Gore. Copyright © 2007 LaChance Publishing LLC. Excerpted by permission of LaChance Publishing LLC.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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