A day in the life

I'm often get asked the question what its like to be the caretaker of some one with dementia. I don't think these questions are intrusive. My cousin tells me that people are being "nosey." I don't think so. Its a tough job with little rewards. Ask any hospice nurse and you will get the same answer. Being a caretaker is the most self-revealing thing you will ever take on. You will learn things about yourself and your loved one that you probably won't like; but you will learn new skills of coping and maybe just maybe of prospering. So I've decided to take you on a journey of a day in the life of me and my mother:

6:00am My mother wakes up. I can hear her moving through the house. I pray and lay still in preparation.
6:15am I get up and walk our dog Ricky.
6:30am I get back and she usually goes out on the side porch with the dog to sit.
6:45am She comes back inside and forgets Ricky tied on the side porch.
7:05am I try to catch up on emails. Ricky is on the side porch scratching to be let in.
7:25am I let the dog in. On the way back upstairs my mother pops out of her room. "Good morning," she says. "How did you sleep?"
"I slept fine and you?" I say.
"I always sleep fine. I'm blessed. Somebody who went to sleep last night didn't wake up this morning."
True
7:29am She asks when we are going to eat breakfast. I tell her I will cook.
7:30am She asks me how much money she has in the bank and when can we go and get some out.
7:31am She ask what day of the week it was. My answer is always Saturday or Sunday. I've learned if she knows its a weekday she will become inconsolable unless I take her to the bank and I've had to referee several scenes at our local branch when she gets confused about why her money "...isn't working out right." Also she lost hundreds of dollars in the house so I try to keep her away from cash at all costs.
7:35am I start breakfast. Usually some kind of protein and eggs. Keep it simple.
7:38am She asks if my cousins who live next door have gone to the beach. I say no.
7:40am She goes in the front room and plays on the piano. Ricky sings along with her. Its hilarious.
7:45am She asks me how much money she has in the bank and when can we go and get some out.
7:46am She ask what day of the week it was.
7:55am We eat breakfast. I turn on the TV. Usually HGTV.
8:15am She asks me how much money she has in the bank and when can we go and get some out.
8:17am She asks me how much money she has in the bank and when can we go and get some out.
8:30am She asks me how much money she has in the bank and when can we go and get some out.
8:31am She ask what day of the week it was.
8:40am She shows me an old photograph she found of her mother, who was a school teacher at Depot School. The photo is dated 1921. "I was born in 1926. How old does that make me?"I tell her 87.
8:45am She goes in the front room and plays on the piano. Ricky sings along with her. It's still hilarious.
9:00am She asks me how much money she has in the bank and when can we go and get some out.
9:01am She ask what day of the week it was.
9:04am She asks if my cousins who live next door have gone to the beach. I say no.
9:05am She asks me how much money she has in the bank and when can we go and get some out.
9:10am She shows me an old photograph she found of her mother, who was a school teacher at Depot School. The photo is dated 1921. "I was born in 1926. How old does that make me?" I tell her 87.
9:15am She ponders if the mail has run. She gets up goes outside. Ricky runs out the door.
9:23am She comes back in. And asks where's Ricky. I say he was with you.
9:25am We go look for Ricky.
9:30am We find Ricky running down the street. Crazy dog.
9:35am She goes in the front room and plays on the piano. Ricky sings along with her. Yep, still hilarious.
9:50am She asks me how much money she has in the bank and when can we go and get some out.
9:51am She ask what day of the week it was.
9:59am She asks if my cousins who live next door have gone to the beach. I say no.
10:00am Steve Wilkos comes on so I take the opportunity to run and take a quick shower. He will occupy her time for a while.
10:38am She ponders if the mail has run. She gets up goes outside. Ricky runs out the door.
10:43am She comes back in. And asks where's Ricky. I say he was with you.
10:45am We go look for Ricky.
10:50am We find Ricky running down the street. Dog is still crazy.
10:58am She asks me how much money she has in the bank and when can we go and get some out.
10:59am She ask what day of the week it was.
11:00am Maury comes on. She loves Maury.
11:05am I know I have a few minutes while she ponders who the father is so I sneak away to do some more work.
11:40am She comes upstairs looking for me. Said I've been away for several hours and was wondering if I were actually gone. I go back downstairs.
11:42am "You are not the father!" Maury screams.
"Lord, look at her run. That's a shame. No telling how many men she's been with. Well I know who your father is: George Sturgis."
I look just like him.
"You look just like him," she says.
11:45am She goes in the front room and plays on the piano. Ricky sings along with her. It's hilarious and it never gets old.
12:00pm Jerry Springer. Oh boy.
12:02pm  She asks me how much money she has in the bank and when can we go and get some out.
12:03pm She ask what day of the week it was.
12:30pm Some body on the show is exposed for being born a man. "Well what in the world. That's a man?"
People will do anything these days
 "People will do anything these days won't they?" she says.
12:35pm She asks me how much money she has in the bank and when can we go and get some out.
12:37pm She looks in the cupboards thinking its the refrigerator.
12:42pm She asks me how much money she has in the bank and when can we go and get some out.
12:43pm She looks in the refrigerator thinking its a cupboard.
12:44pm She asks me how much money she has in the bank and when can we go and get some out.
I can tell she's getting hungry because she keeps rummaging and asking about money.
12:47pm She says she's hungry but we can't go to get anything because she doesn't have any money.
12:50pm She asks me how much money she has in the bank and when can we go and get some out.
I tell her not to worry. I'll make lunch.  
12:54pm She asks me how much money she has in the bank and when can we go and get some out.
1:00pm My brother calls from prison. Oh crap this is going to send her into a tailspin if he asks her to send him some money. I've told him not to mention money to her but he doesn't listen. Dammit. He did it.
1:15pm We get off the phone with my brother. Here it comes.
1:16pm She asks me how much money she has in the bank and when can we go and get some out.
She needs to send him some money.
1:17pm She asks me how much money she has in the bank and when can we go and get some out.
1:18pm She ask what day of the week it was.
Let's go. I'll stop by the post office.
"But the post office isn't open on weekends."
Shit
1:25pm She asks me how much money she has in the bank and when can we go and get some out.
1:26pm She ask what day of the week it was.
1:27pm She asks me how much money she has in the bank and why can't she get it out.
1:28pm She asks me how much money she has in the bank and why can't she get it out.
1:30pm  She ask what day of the week it was.

Argh!!!! Make it stop! Goddamn please make it stop!

At this point I stopped taking notes. I abandoned the project. The sheer volume of entries has siphoned by patience. The banality of enumerating all the subtle points that show how my mother has practically slipped off the earth is both disheartening and dispiriting. These little repetitive acts are torturous. Like the single flat note played dysrhythmically in the weird-masked-occult-scene of the movie  Eyes Wide Shut. The effect is unsettling and morbid. As a caretaker you realize that nuance is favored over boldness. Sudden changes will stir anxiety. That you are alone in your task or so it feels. You must resist the creeping mist of resentment that your life is no longer your own. That we both, caretaker and infirmed,  exist in this helix of forget and repetition. The winding down of things. But I won't let myself succumb to such . The long list of calls and responses and chores that lead into the nothingness that Alzheimer's brings you. I will not allow it to shape my relationship with my mother. To reduce that glorious, intricate; sometimes strained but often loving history to lunches and prescription pick-ups and laxatives and dreaded nightly conversations of where does she sleep because this is not her house even though she's been living here for 45 years. I will not.

1:38pm I take my iPhone and delete the detailed notes I had been taking all day long. Time intervals be damned.
1:39pm I catch my breath. I sit at my computer and pull up what I call my Inspirational Make Through The Moment Folder. Its a collection of images, phrases, journal entries, babblings, emails from friends, etc. Anything that puts a smile on my face. I find the file Bill_Keane.docx and open it. Bill Keane (the creator of the Family Circus) says:

"Yesterday's the past, tomorrow's the future, but today is a gift. That's why it's called the present."

1:44pm My mother calls upstairs to find out where I am.
In my room writing emails.
1:45pm She asks me how much money she has in the bank and when can we go and get some out.
1:46pm She asks what day of the week it is?
It's Saturday. A nice day to relax. Where's Ricky. Lets go for a walk.

Wigs and Dementia: A Love Story

Alzheimer's is a mother fucker. I apologize if that offends you but it is. It's a haunting disease. It's a demon that slowly possesses the victim. It's the Great Pumpkin on Halloween night wrenching every ounce of dignity and happiness from you until all that's left is the empty husk of despair---like the dried hollow carcasses of the left-over summer cicadas that crunch below your feet. Their magnificent song now smote. Dementia is not the romanticized tearjerkers with Jessica Tandy twittering around looking for long lost school books in Driving Miss Daisy or the stylized melancholy of Julie Christie's evaporative performance in Away from Her.  No, this disease is much crueler than either.

As a caregiver, I often feel like I am on the 102nd floor of the World Trade Center on that bright azure Tuesday in early September of 2001.  Like a thief, my mother's illness came upon both of us suddenly. I was going about my life; doing my job, going on vacation, playing my games and watching television. When neurological disease attacked. At first there was confusion and pandemonium then the shrieking realization that both our lives would be forever altered.

As the bricks of memory crumble one must knit as much of life together as possible. As the disease pushes your loved-one deeper into that small space you feel helpless. You watch as the light of understanding fades from their eyes. I imagine having Alzheimer's is like watching a disjointed movie filled with images and instructions. All of them coming at you in rapid succession. Random words next to images that you think you should know but somehow you don't. That improbable reel now playing in my mother's mind has began to to tell her to wander---a marked symptom of dementia. Usually the person, in his or her mind, is looking for something specific. With my mother it is the mail. She wants to be useful. To pay her bills. To be functional. The tentacles of a life, no longer tenable, are reaching out to her. She tries to feel normal.

We recently acquired a new neighbor who is doing extensive work on his yard. While nice and commendable, it has affected the predictable balance that was our morning routine. Soon after breakfast, from about 9 to 11 a.m., my mother gets up out of her seat and walks outside. She stares blankly across the yard with her arms neatly folded behind her back. She walks to the mailbox, bends over at the waist looking for something inside that may hold a glimpse to her former self.  When she doesn't find it, she closes the box and continues her walk. She makes a circuit around our house then returns inside to her recliner, only to pop up ten-minutes later to go back outside. You can time it:  no more or no less than seven-to-twelve minute intervals.  Up out of her seat, hands neatly folded behind her back walking outside.

Intermingled with this wandering is the random changing of her clothes. For some reason, she's started changing her clothes multiple times a day, sometimes two or three times within an hour. She'd get up from her recliner, go upstairs, change, and return sporting a new outfit and a wig.  Now, my mother has always loved her wigs. And I don't mean a few ornamental wigs like switches or chignons. My mother had long wigs, curly wigs, sassy wigs, dowager wigs, solemn wigs, flirtatious wigs, Afro wigs, straight-haired wigs, church wigs, cookout wigs. Wigs for all occasions in many different shades and textures. My mother was always a well-dressed woman. She was born of that era when women dressed to show their status and education; to show they were not "loose" or lurid, thus always evoking propriety and decorum.  But now she's taken to resembling a bag lady.  She's taken to wearing one of my old work shirts over her housecoat, layered over a pair of denim jeans, layered below a skirt that would be at home at a hideous skirt convention. Our family always knew her looks were uncompromising, but now her patrician style has been breached by disease. Yet, she still has an attachment for those wigs. So with each costume change she dons a new one and descends our curved staircase as if she's Queen of Romania.

But as soon as she sits down she takes the wigs off and completely forgets them.  As her parade of motley fashions progresses throughout the day her wigs pile up on the end table like some furry creature in a horror film. I envision them forming some hairy amalgam coming after me as if I was Karen Black being chased by a demonic idol in Trilogy of Terror. Truth be told, I hate those wigs. I always have. They are the source of one of my greatest teenage traumas. It happened quite surreally on a Wednesday afternoon. Not unlike 9/11, it came quite unexpectedly. I was just in the beginning stages of  experiencing "outcast status" in the ninth grade.  At the time, Carrie White was my hero and I fantasized I had magical powers and would one day rain holy teen angst-driven hell down on my classmates.  I had stayed late after school because I didn't want to be at home around my new family---My mother had remarried after my father's death and my stepfather and I were at odds. I got a ride home with some classmates.  As we pulled up in the driveway, one of the kids pointed toward my backyard.  My eyes widened in sheer fright.  My mother had taken this occasion to wash her wigs and hang them on the clothes line (which was never used for clothing because we had a Whirlpool washer and dryer so what the bloody hell would she hang those wigs out there like that for?). Somebody asked if we were skinning raccoons and the entire car erupted in laughter. If I only could have withered into nothingness.  I remember being so angry at Mother. She did go through a Jheri Curl phase where I actually wanted the wigs back, but that's another blog.

It's funny how when life gets dim and dour it is the small things that keep us going. We rush through life feeling angry and jilted, percolating on emotions of fear and loneliness; discharging unhappiness to everyone we meet and favoring complaint and complacency over love and adventure. I try not to live like that. Not to say I'm some radiant beacon of hope in a thickening fog of woebegone. But life is simple, really. "If you're breathing you're already better off than the dead" as my mother likes to say.  And now that her disease has taken away so much of her---of us---it truly is the simple that I focus on.  So I just sit back and watch in wonderment the show that is my mother's illustrative incarnations on our kitchen runway serving Miss Havesham realness.

These fleeting moments are just either the foam needed to keep the flames at bay, or the snippet of air drawn in to soothe the heat; a hushing cool on my face that whispers a stillness to life that says these moments matter. That it's not the raccoon-looking wigs on that clothesline from years ago. But the pile sitting here on the end table today that's most important.

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.