Gwen and Richard and Euripedes

Euripedes once said "Waste not fresh tears over old griefs." As I look at the face of Richard Martin, the eight-year-old destroyed by cold-blooded merciless killers in the Boston Marathon Bombing I am struck by this phrase. His crooked teeth and big eyes could have been my own not that long ago. Well a little longer than I want to admit. This child should not have died. It is inconceivable that such a thing is possible. But here we are spilling fresh tears over an old grief. The grief of losing one so innocent. From the twenty children murdered in their classroom in Newtown to Hadiya Pendelton murdered in a park in Chicago to Richard Martin murdered watching a race in Boston. Seeing the bright innocence of Richard trapped in that picture before his death I realized that my mother's dementia has erased more than he will ever know. If we let it time will take away all that is precious and wondrous from us. Rob us of our loved ones and our memories. Richard and my mother twin-helix representing two points on the frightening and often indiscriminate spectrum of life. Destroying and consuming. Eradicating and permeating all parts of our lives. Making us wonder if we will continually spill fresh tears or will they ever dry up.

I remember the first time I typed the word Alzheimer's into Google. My hands were shaking as I looked into that menacing rectangle below those improbably happy letters. Bold primary colors incongruous with the ominous information I was searching. Google auto-finished the word after I had typed the letter "z" and it gave me options as if it knew I couldn't or wouldn't bring myself to type in the rest of the phrase; symptoms. I clicked on the link 10 Early Signs & Symptoms of Alzheimer's and realized with upending terror many of them had already been exhibited by my mother. I had a similar feeling looking at Richard's picture. The bright smile. The bold colors of the paper he was holding. The wobbly script that only a child could make look elegant. He could not be dead. Why has this happened? Neither my mother nor Richard deserved this fate. He was seraphic. Innocent. New. With out the pall and stink we find ourselves enveloped in as we age. She a strong, tough hard-working lady that tried--and probably not always succeeded--in living the best, christian life she could. Neither deserved the evil that has been visited upon them. Once I touched that enter key on my computer I was propelled into the first stages of grief. Grief is hard as I'm sure Richard's family is finding out funnelling their pain through Elsabeth Kübler-Ross's 5-Stages of grief from her seminal 1969 book “On Death and Dying.” But unlike the psycho-sexual razzle-dazzle of these stages as they were portrayed in the glitzy movie All That Jazz, the Martin's grief as well as mine is real. Ben Vereen would not slink by in his sequin blazer singing Bye Bye Life. Death is rarely that glamours. And grief is a tangible thing that doesn't need your approval to hurt you.

After the denial of it all I went through the next stage: anger. There were swings from cold icy hatred to white hot acrimony. I was angry at God for what he had done to my mother. I was angry at my mother for having this disease. A disease that would force me to give up my life to take care of her. I was angry at my brother because of his long incarceration preempted him from helping me--she was always there to bail him out after all. I was the good son. I was the one always there to help pay bills and bury the dead. I had put in my dues. I was angry at myself for being angry at her. Grief makes you a mess. A hot fucking mess. A blubbering, stuttering, angry, depressed mess. I just kept saying "Why her? Why me?"

Ironically the answer I needed came from my mother herself. In a long ago time when she had coherence. I was working at the International House of Pancakes as a dishwasher. It was my very first job. I came home angry because I had been written up for using the telephone in the manager's office. This was in the century before mobile phone use became ubiquitous. My mother thought I was being ridiculous. So I brought out my trump card and told her that other members of the staff had used the phone without repercussion.

"So," she said."SO?!" I sneered incredulously.
"So? What are the rules? Were you allowed to used the phone or not?"
"No. The rule is that we can't use the phone in the office. We can only use the pay phones in the lobby and only on our break."
"So why did you use the phone if you knew it was against the rules?"
"Everybody else did it," I said as I rolled my eyes. Obviously she's just not getting.
"Just because they used the phone and got away with it what made you think you could use it?"
"I don't know," I scrambled for words "but that's not fair. If they can do it why can't I do it?"
"Who told you life was fair?" she said with her elder black woman schooling her son voice.

It was a hard lesson but one I needed to learn. One that applied to my grief over my mother's disease. One I started to apply to the every day life I led. One I applied when I saw the picture of Richard Martin. I could not waste fresh tears over this old grief. Once I realized life wasn't fair and that people will die and people will get disease it freed me. Liberated me to take in the scope of life. All of it.

This brought me to the final stage, acceptance. And even that I think is incremental. You can not isolate yourself. You have to take it in. Take in all of it. Even the parts that hurt. Even the parts that are bad. Even the parts that you don't like. Because without those parts the parts that feel good won't feel as good. People always say to me that I should remember my mother as she was. Vibrant, aware and unbreakable. But to me that would be an injustice. That would be a lie. This slow, frail, doddering old woman is who my mother is now. This is what she has become and to deny that would mean that I am not loving all of her. So I am going to remember Richard Martin. Remember him as the shiny little boy with the big eyes and crooked teeth. But I am also going to remember him in his death. Rent and destroyed. Because life isn't fair but that doesn't mean it can't be wonderful. It doesn't mean that I can't laugh a little when my mother picks up the TV remote and thinks its the cordless phone. Or feel joy when I wake up in the morning to her playing those same six songs in the same order on the piano. Or be amazed when she can play any other song upon request. It doesn't mean that when I look at that sign Richard was holding that read "No more hurting people. Peace" I can not be empowered and embolden by its legacy and its pledge. To not hurt people. To not waste fresh tears over old griefs.

Jason is Tresha's father and Ferren is Tresha's daughter

I stared at the child-like scrawling handwritten note on the upstairs credenza. I don't think she tried to hide it from me. After all it was just there beside the door to her room. A note detailing how far my mother's condition had travelled. A simple bit of information detailing intimate knowledge of her life that she could no longer hold in her brain. The Jason of the note is my brother. Her oldest son. Tresha is his daughter. And Ferren is his granddaughter. Straightforward you would think. My mother only had two sons and two grands and four great grands. Surely eight names and relationships should not prove to be so ponderous that she would have to document them. But here it was in front of my eyes.

I tell people that my vision of Alzheimer's is like magic. Not the fun legerdemain of rabbits in top hats or sawing pretty assistants in half. No, this magic is menacing. It is trickery. It is illusion. Imagine yourself sitting in a chair. Watching television talking to your son. The sun is out and your dog is sitting by your feet. Then you blink your eyes and suddenly its night. And there's a person sitting in front of you asking you questions you are at odds to answer. Then another blink and the dog is back by your feet and your long dead mother is sitting in front of you and its 1967 all over again. Blink. You're back sitting in your recliner watching television and your son is telling you things he's said you've said but you have no idea what he's talking about.

Blink.

Dementia is like a reducing math problem. You start out as a child with a massive black board. It is empty. Pristine. You're given a piece of chalk. And told to write. So you set forth and start your math. You start out with the number One. That singular number that is your life. To that equation you add friends, husbands, children, education, careers, houses, bills, dramas, churches, artistic expressions, travels, illnesses, beauty and death. As you near the other end of the board you look over the totality of your life and you see this mesmerizing array of  calculus. Sprawling across the ether. Your life rich and dense. A massive equation that started way down there and through lush experiences has delivered you to this point in your elderly life. But then something goes wrong. A mechanism that's out of sync. A leaky pipe you can't find. Soon parts of those equations start disappearing. Not enough at first to mess up the math but just enough to make you look at it differently. A repeated question, a lost item, a missed bill payment. That's all the signals you or your loved ones get. Not that a blaring tornado siren would stop the onslaught of what is to come. And then the reduction starts in earnest. You stand-by helplessly as the numbers disappear as if its been written for a scene from a thriller. A montage of images from the hero's life slowly erasing from his mind. Then as the up-tempo music builds the random numbers on the blackboard start blinking out in rapid succession. Reducing and reducing counting down to the hero's doom. The evil villain off to the side handwringing and laughing maniacally.

Soon there are only a few scraps from which your loved one can pull their life together. So that's what she does. It doesn't matter if those memories are discordant with reality. Sometimes my mother thinks I'm her mother; which I guess is a complement to me. At least its somebody she feels safe around. Sometimes she thinks I'm my step-father and sometimes still she questions me as if we've never met. What many people don't know about Alzheimer's and other neurological diseases that cause dementia is that the sufferer's brain literally is eaten away. As much like science fiction as that may sound to witness it or worse to live through it is a daunting maze of sublime heartache. Haunting nostalgia and the bittersweet realization that the little bit your loved one was holding onto today may not be there tomorrow. You both are dangling from an ever shrinking ledge. Down below you see the swirling morass of obsession and delusion. The brain is like a battery and dementia is like corrosion. It simply decomposes the mind. Once the connections are gone they will never return. It renders even the most mundane chores insurmountable. To watch my mother, a well-educated former entrepreneur who ran several successful businesses over the course of her life, struggle through a monthly bank statement or a recipe or instructions presses me to find the beauty in caregiving. The constant barrage of the same questions fired rapidly always within minutes of each other and often during times when I am trying to do something else would try the most saintly of patience. This fierce woman becoming more childlike and fragile by the day. But unlike a child who learns that fire is bad once my mother forgets, that lesson will never return. Ever. She will never know that again. So the vigil becomes more dire as her behavior is framed by this memory reduction. I can't blink because if I do all the household trashcans may be laid-out in a straight line on the front walk. Blink and the phone is ringing and she's trying to answer the TV remote.

Blink.

But I have to say that so far it doesn't feel like a burden. Stressful but not a burden. Through pain and hardship I have been driven, bullwhipped I would even say into this inclement harbor. Docked to my mother at the end of her life. But somehow I think this is where I'm suppose to be. This seems right. This is the hour of the most important time of my life. To taste and touch every moment of this. To be here now in this place. More for her than me but it feels like I'm getting more out of the experience that she is. Savoring it no matter how painful. Because just around the corner there maybe a wonderful horizon. To float on those stories of her youth; like the time she snuck away from home at fourteen to go to a party and ended up talking to a boy at a local beer hall. Or the one where she married her first husband a second time (after a tumultuous divorce) when he swept into town and took her to Brooklyn where he promptly locked her in his apartment for three days while he went on a drinking binge. I can see her now escaping that apartment in her 1954 black and white Ford Skyliner driving all the way from New York to North Carolina non-stop. And how about the time when she was six and her mother became the first black person to have a play produced at the Carolina Theater in downtown Winston-Salem. In Wake Up Chillin' there was a scene in a cemetery. The children were to talk to their ancestors. Because of budget restraints none of the child actors which included my mother practiced in costume. Opening night the children were onstage ready for the emotional climax of the play when the adults came out covered in white sheets. Of course this sent her and all of her young cast mates screaming up the aisles in fright! They thought real ghosts were after them. These are the bright spots of the day when the steely grasp of the disease releases her. And I'm here to tell that story. We often ask God "Why me?" I know I have. But I think I've been given my answer. Why me? Who else but me. Because Gwen is my mother and I am her son.

Somebody stole my china and then brought it back

Alzheimer's Disease is sorta like demonic possession. It happens upon you unexpectedly and before you know it an outside entity is controlling your every move. Partially because I'm a writer and partially because I describe myself as jovially macabre--which is a person who other wise is good-natured but  delves into darkness very easily--I often think of the famous paragraph from William Peter Blatty's book The Exorcist. The quote perfectly embodies my feelings on this insidious disease.

“Like the brief doomed flare of exploding suns that registers dimly on blind men’s eyes, the beginning of the horror past almost unnoticed; in the shriek that followed, in fact, was forgotten and perhaps not connected to the horror at all.”

 And there it is. In words. My sentiments. Looking back over the course of my mother's disease I can note the very moment the evil antigen was activated and my antibodies of fear and denial went into overdrive.

I never met my grandmother. From what I hear she was quite the character. A strong independent, church woman, much like mother. Vandelia was the matriarch of our family. A woman of unquestionable virtue and taste. As I've gotten older I realize the stories I was told as a youth were more myth that reality and the true nature of her personality resides somewhere between imperious and petty. She was a good cook and a very helpful woman. She helped the people of our close knit community. She was a business owner when black women were domestics and she even ensured that the poor children who attended the segregated depression era schools of Winston-Salem had hot food (usually soup) for lunch everyday. She would take large pots of hot food to the schools and serve the students who here hungry. She knew that a well-fed child learned better and that most of the students would not eat between breakfast and dinner. She was also an avid collector of fine home furnishings. Being the wife of a prominent physician did have its rewards. She loved nothing better than having goods from the white-only businesses delivered to her stately home on the "negro-side" of town. Though she lived far from the city's toniest neighborhood Buena Vista (say it like a real southerner: Bune-nah Vistah) her home was no less well-appointed.

My grandmother died 4-years before I was born and left a sizable assortment of fine china to her two daughters. Now somewhere along the way a set of Wedgwood Old New York Red accidentally (or intentionally--it greatly depended on the mood of my mother and her sister when the whereabouts of the china came up in discussion) was broken up. My mother swore before all the gods above that her sister had the cups hidden. My aunt said my mother had the complete set. This debate ran concurrently with most family gatherings until my aunt's death in 2004 at the age of 95. Four years later the mysterious cups that had been missing for 45 years showed up out of the blue in my mother's china cabinet. It was six months after her 82nd birthday. She called me one day very upset that some one broke into her home just to put the cups into her cabinet.

I was a blind man at the time and I did not see the blistering glare of the sun. At the time I thought it was a mere age related delusion. That my mother mistook one of the cups she already owned as the missing Old New York Reds. She kept mentioning them to the point of aggravation and I made a note the next time I was in North Carolina to visit her I would get to the bottom this. My mother was always a sensitive sort. She always thought people disliked her and she would take offense at any hint of dispute. She was to say the least, paranoid. So when I got in one afternoon from my flight I asked her to show me the cups. When she could not instead of admitting her mistake she argued me down that the cup-placing culprit showed up in the middle of the night to take the cups away again. She was determined to prove that some one was trying to drive her insane. If this sounded like a bad Tyler Perry movie with my mother cast as a black Karen Black; and now you begin to understand my childhood.

Unfortunately it was not a movie. The tale as well as both our lives soon began to unravel and now I often wish that she was just paranoid. That there wasn't a disease literally eating holes into her brain. Holes which started out with the delusion of missing fine china that grew to decimate memory and cognition. By the time I went to my priest--a neurologist--my mother was fully possessed by the demon of Alzheimer's. It made her do crazy things like loose her keys three times (the last for three weeks). It made her drive her car around for four hours even though she was just heading to Harris Teeter a mile-and-a-half away from home. It made her forget that I had called her the day before or that she had already paid the light bill; so she did so again and again and again. At one point she had enough money paid to Duke Energy that could keep the lights on for several months. It also made her set the stove on fire twice and caused her to think that all three bathrooms in her house were not working. I don't even want to discuss her solution to that perceived problem. But that was the demon doing its work.

And let my cry come unto thee was the title of the last section of the book The Exorcist. It is all about the climatic battle between God and the Devil over the soul of a little girl. Off in a room in a house that looks remarkably like my  mothers there are no priests fighting demons till death. Its just me and my mom trying to cope with an ever shifting reality. A new normal of lost memories and bodily functions in revolt. A vicious greedy demon trying to eat her alive. We shall use all the powers we have to combat it. But most importantly love and patience. I may not win but I won't give up.