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  Caring for Mary

  One Caregiver’s Humorous Dialogues with a Demented Old Italian Woman

  Nicholas Andrefsky

  iUniverse, Inc.

  Bloomington

  Caring for Mary

  Copyright © 2012 by Nicholas Andrefsky

  All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

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  Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

  Certain stock imagery © Thinkstock.

  Cover photo and photo of Mary & Nicholas by Kelly Columbo

  ISBN: 978-1-4620-9759-3 (sc)

  ISBN: 978-1-4620-9761-6 (e)

  Library of Congress Control Number: 2011963206

  Printed in the United States of America

  iUniverse rev. date: 01/10/2012

  Contents

  Preface

  Introduction

  Getting Started

  The Poop Chronicles

  Bathing

  Honey, I’m Cold

  Hi, Nanny. Remember Me?

  Dementia Dos, Don’ts, and Dignity

  And When She Did Remember

  The Weasel Sisters

  Family Trivia for One

  Sugar Cookie Please, Alex

  The Dance of a Thousand Dinners

  Going Home

  Pocketbook, Kleenex,

  Eyeglasses, and Makeup

  Momma and Daddy

  The Popi Factor

  Epilogue

  About the Author

  For Beth, without whose trust, faith, love, and support it would not have been possible.

  Mary when she was still Mary

  Preface

  In the winter of 2011, my dear friend Beth and her sister Taisia were faced with the sudden loss of their mother’s caregiver. Since I was facing hernia surgery, which meant giving up my job as a camp caretaker, I gladly accepted the offer to take care of Mary.

  Because of the dementia and extreme memory loss, she really didn’t remember that I had known her and the family for more than twenty-five years. This woman of great intellectual prowess was reduced to repeating the same phrases, asking the same questions, and living the same life day in and day out.

  Historically, Mary did not like me. Mine had been the smallest of slights many years earlier; it had to do with a pork dish, but I digress. The simple truth was that she didn’t like many people outside (and some inside) the family. She tolerated all with vague, nondescript pleasantries and would criticize them when they were gone. This was my charge. However, there were a few advantages I had at the outset that immediately ingratiated me to this occasionally hateful old woman.

  1)I was a man—a man who knew the way to the heart of a narcissist.

  2)I was Italian, and I sang Italian songs that she knew.

  3)She and I were Pavarotti fans.

  4)Humor was—and is—my favored weapon of choice.

  5)Not being a normally patient man, I would have lots of time to practice.

  I was not a professional caregiver. I was just a guy who knew enough to make the lives of my dearest friends a bit easier. The following is a short volume on how you, too, can care for a lost mind.

  According to Taisia, Mary’s younger daughter:

  Mary is my mother. She’s had this role for the last forty-seven years. I was a midlife surprise. She was forty-two when the doctor told her that she was pregnant.

  She said, “Well? What are we going to do about it?”

  He replied, “What do you mean? In nine months, you’re going to have a baby!”

  Sheesh, Ma! No wonder I needed therapy.

  But my mother was one of my best friends. And she was beautiful. I used to pore over pictures of her in her teens. A mane of blue-black, shiny, wavy hair; soulful brown eyes; a gorgeous figure; and an even more gorgeous smile. She still is beautiful to me.

  In my teens, I put her through the prerequisite hell that a lot of moms may go through. I was rebellious. I stayed out too late, talked back, and disobeyed. I was always a cut up and a bit of a wisenheimer, so I’ve had my share of being chased around the house with various household items: her slipper, the fly swatter, and the ever-dreaded wooden spoon!

  Her patience for and tolerance of my antics may have wavered at times, but her love for me never did.

  I used to hide little love notes in the things on her dresser. She’s kept every one of them.

  My father died of cancer in 1989. Popi and my mom were best friends, and his passing devastated all of us, but especially my mother. They were married for thirty-seven years. About six months after his death, I was offered a promising job with General Electric in Richmond, Virginia, over four hundred miles away. I was afraid of leaving the town I had grown up in, not knowing anyone there, and was afraid of the new job. I was also afraid of leaving my mother—to whom I had spoken every day of my life.

  She said, “Tizzy, you have to do this! Nothing ventured, nothing gained! Give it a year, at least. If you end up hating it, just come home!” I packed my belongings—and off I went. We never went a day without talking.

  I’d say, “How are you, Mommy?”

  She’d reply, “Oh, I’m just fine, dear!” She was excited for me. My beautiful mother was my biggest cheerleader.

  On every holiday, I’d make the long trek up I-95 to see my mom and Beth (Sissy). I later learned from Sissy that my mom had missed me terribly and had been very saddened that I had left. It always struck me that she never told me how sad she really was—out of fear I’d feel guilty.

  Twenty-two years later, I’m still living in Richmond. I guess I didn’t hate it after all.

  Around the end of 2009, things began to change subtly. Mom began to forget seemingly small things. Then she began repeating things—asking the same questions over and over—and would grow easily confused. My sister and I would compare notes on the phone about our conversations with her. We knew. It was the onset of dementia.

  She said, “What is happening to me? Why am I like this?”

  For me, the hardest part was that she was aware of this ever-worsening change in her personality, herself, and her life.

  And we were all in for a heartbreaking, frustrating, devastating disease that would eventually invade and change all of our lives.

  My mom could no longer live unassisted. She couldn’t drive, cook, bathe, or dress herself. A nursing home was not an option. Sis and I visited a few nursing homes. The dementia units (despite their glossy brochures and happy, smiling seniors on the cover) were tragic and depressing. We desperately sought another option for our mother.

  Enter Nicholas Andrefsky
.

  Nick has been a friend of our family for twenty-five years. He was living with—and caring for—his elderly dad, but he did not need as much assistance as my mom. It came to be that it was a great fit for both Nick and his dad to move in with my mom.

  Don’t get me wrong—at first, it wasn’t all “Skittles and beer,” as my mom used to say. She’d say, “Why is he here? I don’t need any help!”

  But the acceptance came.

  A year and a half later, she now refers to him as “Nick-a-nootz.” They sing opera together, he calls her sweetie, and his unwavering patience and grace with my mother seem to come from some other world. They have their routine: the Three Musketeers, regular jaunts to “Dunky” (Dunkin’ Donuts), great little restaurants, and outings. He recently sent me a picture of my mother grinning in a huge sombrero with a mariachi band gathered around her.

  My mother has her dignity (yes, despite the sombrero!). As much as this disease allows, she has her dignity. She is clean, warm, well fed, well loved, and well cared for.

  Nick’s father is a gift to us. Popi wakes up each morning and calls out, “Good morning, Mary!” He promptly gives her a loud kiss on the cheek. He is a jokester and makes my mother laugh.

  I will eternally love these two men for the peace they’ve brought my family.

  My wish for all who suffer from Alzheimer’s—and its evil, dark cousin, dementia—is that they are treated with love, tolerance, and acceptance. I hope that their families never forget that their loved ones were once young, beautiful, and independent. Treat them with respect—and remember that we may be there someday unless there is a cure.

  We must all keep our humor. Flaunt it in the face of sadness—and tell the people in your life that you love them every day. I hope you enjoy this book as much as I have.

  Introduction

  As Mary’s older daughter, I wish I could boast and sing praises of this poor old woman who now requires full-time care, but there has been too much corrupted water under that bridge.

  Legend says that my birth certificate said “Baby” for nine days because my parents had not yet decided on Beth. Not bad—after all, I was their first, why would they have a name? Although I’m certain no harm was meant, what a disturbing thing to have been told to one so young. My mother said, “Popi and I wanted to get it right.” Ah, thus begins a tale of the firstborn daughter!

  Mom was a beauty. We lived in a small town in upstate Michigan where life was far from wonderful. My father drank. I spent many an afternoon in a bar drinking tiny glasses of Coke that tasted like warmish mildew. I’m not sure where my mother was while my father had charge. I don’t recall ever seeing my father—or my mother—drunk. The couple with whom my parents spent the greatest time (till my mother was slighted) were heavy drinkers. I remember my parents having a very good time with that family.

  I greatly loved my parents—although my mother admitted to me eight years ago that she always suspected I loved my father more than her. She told me with great pain in her voice that I had turned away from her kiss and pushed her away with my chubby hand when I was two. That was when she decided that I was her “prickly pear”! Things changed for her with me with that action—or so she said. I couldn’t control my bodily functions, but somehow Mom reasoned that I was wise beyond my years. She safeguarded her heart from me from that moment on.

  That’s not to say that she was mean or cruel. She was an artist of great talent and made beautiful things for me. I had a stage with tiny marionettes, a snowman with a painted face, handmade clothes, and painted mural walls. I loved my mother.

  I moved a lot when I was young. My father used his position as editor of a newspaper to voice his personal beliefs, leaving us an outcast family more than once. That—and poor money management and two bankruptcies —caused us to move three times in three and a half years. The moving stopped when Mom put down her foot and told Papa that we would raise Tiz in one town—and not as a gypsy. I have said to Tiz many times that neither of our parents should have been parents because they were too self-centered. Who knows? One day my children may say the same of me! We all know so much more than our folks.

  I didn’t know my grandparents on my mother’s side. We lived far away, and she barely spoke of them to me. She was not particularly close to her siblings. She went thirty years without speaking to her brother. When her favorite sister died, Mom reunited with Phil, bringing him to her neck of the woods as though they had never separated. When I stated the obvious, she denied ever having less than love for him. Putting the separation on him was a lie; my mother cut people out of her life all the time for the smallest reasons. My father was an only child. I knew his parents. My parental grandmother cared for me when I was little, and I loved her. My mother did not!

  My teen years were tough on my mother and me. I was savvy about Mother’s hypocritical ways—and they drove me mad. She would not reason on matters with me. She stuck out her tongue, spoke to me sarcastically, and told me that no matter how much I knew, she would always know more than I did! When I asked her why, she said, “I am a chief and you are an Indian—that’s why!”

  On a peaceful day, I said, “Please don’t use the chief’s Indians on me, Mom; it drives me crazy.”

  She couldn’t wait till the next upheaval to lance me with her infamous line. It seemed more powerful because she knew it lit me up. That was how she handled her troubled fifteen-year-old daughter! I became a storm cloud of resentment and anger. I married at seventeen with the clear realization that I had to get away from her or I would be harmed for life. I had two children in two years; smart huh?

  She was not a bad mother—she simply didn’t much care for me. I have said all of my adult life that she loved me but didn’t like me. Her heart was my sister’s possession—in spite of Tizzy’s years of drug abuse, wild adventures, school mayhem, and constant disobedience toward my parents. She said that I had sibling rivalry and jealously toward my younger sister. Was that a joke? Denial is not a river in Egypt.

  My older brother—the product of my mother’s first union—lived with us. She was widowed when Frank was six months old. My brother is autistic. My mother always has been embarrassed by Frank’s illness as though it was her personal failing. Regarding the fruit of her womb, I did no wrong. I was simply her flesh—never wrong, never unlikable. The world was always dirty and ignorant, as they were not her flesh. That truth was always undone when I would do a small thing such as not compliment her looks, food, house, art, or books; disagree with her; or do anything that she found important that I didn’t. It was the way of a narcissist.

  Things soon started to go seriously off track for us. My eldest was in college. My next was serving in the army, and three boys were home bouncing off the walls. Popi had become very ill and died after a year of hospitals and ill-fated surgeries. We were all bereft. She quit her job, Tiz moved away, and our declining patience started to show. Mom and I had two rows that had caused us not to speak for several weeks. She will be going to her grave silent to those who have crossed her. Both times this happened between us, Popi begged me to call and ask forgiveness. I did, but the resentment was palpable. Now our natural buffer and peacemaker was dead! One nasty, angry daughter and one woman with whom you can never disagree!

  That’s how it has been since my father’s passing. We just don’t get along. We love—but do not like—each other.

  In 2008, Mom started to forget things here and there. The forgetfulness was infuriating, and—being the hardhead that I am—it took me much time to realize that this was not directed at me. It took two years for us to realize that she was gone. Dementia is easy to hide if the one with the malady has all her life hidden her true self from the world. Tiz came home and we cleaned Mom’s house of years of insane gathering. We researched insurance companies’ rules and responsibilities. There was no way I would ever put my mother in a nursing home. I had promised her
that many times over the years. Tiz and I were told by my mother’s doctor that we were ridiculous for not putting her in an institution. My husband thought Nick could help us. I hope it is clear that Mom and I could never survive together. He has been a gift from God.

  My mother no longer remembers me; she thinks I am a friend of Nick’s. They relocated to Florida, where it is cheaper to live. Their house is beautiful, the weather is warm, and the love given to my mom is immeasurable.

  I believe in the Resurrection promised in the Bible by our King Jesus Christ. I know that when I meet my parents again—and they are restored and our imperfections gone—that I will be able to look them both in the eyes and say I did my best. I did what Jehovah required of me. I provided the best I could for my mom.

  Getting Started

  Meds may well be the hardest part of the journey because they are critical in my case. Timing is everything, and the daily routine cannot be ignored.

  Mary suffers from colitis, diverticulitis, high blood pressure, and anxiety. She is also sensitive to nearly everything she eats. Learning to keep the meds down was a trick in itself.

  I eventually figured out that all forms of fiber upset her stomach. This would cause her to vomit her meds or have diarrhea. It was a protein and starch diet for her. Since her favorite snack was anything with sugar, I had to hunt down something sweet that wouldn’t pack the pounds on her. Flavored mini rice cakes were the way to go. They are low in everything, and she thinks of them as a treat.

  Mary also suffers from an insidious cough. This cough is so wet it sounds like pneumonia. The few times we made the trek to the hospital, I had to assure the doctors that her left lung always manifested like pneumonia and to ignore it. This was not easy to do as a layman. I finally got her primary physician to make a note in her chart that she had a bad left lung.