My Mom My Hero: Alzheimer's - A Mother and Daughter's Bittersweet Journey
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Praise for My Mom My Hero
“Lisa Hirsch has the remarkable ability to help people touched by Alzheimer’s see that the disease opens as well as closes doors. With humor, compassion, and insight, her observations remind us to stay open to the unexpected gifts the experience brings. My Mom My Hero is filled with love and a deep appreciation for the human spirit. It’s a book to return to over and over.”
—Laura Stein, best-selling author
“People who are caring for a loved one with dementia or Alzheimer’s face not only the monumental day-to-day tasks of caregiving but also enormous emotional turmoil brought on by the unraveling of their relationship with a person so important to their life. With grace, humor, and empathy, Lisa Hirsch shows us how to live in the moment and savor the special, even sacred times we can still create with the people we care for, no matter how difficult the circumstances. This book is a rare gift for anyone who reads it.”
—Holly Robinson, author of Sleeping Tigers
and The Wishing Hill
“Ms. Hirsch transforms her relationship with her mother through a maze of memories and imaginings brought on by Alzheimer’s. We follow her story with personal hope—can we reconcile our own mother-daughter relationship with such grace and humor?”
—Darlene Markovich, founder,
The Missing Peace Project
“Lisa Hirsch takes us on this wonderful journey about how her distant relationship with her mother is set aside when her mom is diagnosed with Alzheimer’s. Lisa becomes energized by her mother’s courage and takes on the role of core caregiver. Clearly another lesson on how love conquers all. A must read for anyone dealing with elder care.”
—Pat Moffett, author of Ice Cream in the Cupboard
“With her cheery spirit and thoughtful reflection, Lisa Hirsch shows us how we can have meaningful relationships with loved ones suffering from Alzheimer’s. My Mom My Hero is a light of inspiration in a world that can be dark and frustrating. To me it’s a story with two heroes—mother and daughter.”
—Franz Wisner, New York Times best-selling author
of Honeymoon with My Brother and
How the World Makes Love
My Mom My Hero: Alzheimer’s—A Mother and Daughter’s Bittersweet Journey
Copyright © 2013 Lisa R. Hirsch
Published by Logan Shawn Press
All rights reserved. No part of this book may be reproduced (except for inclusion in reviews), disseminated or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, or in any information storage and retrieval system, or the Internet/World Wide Web without written permission from the author or publisher.
DISCLAIMER
Actual people’s names have all been changed to protect their privacy.
Visit the blog at www.MommyHero.blogspot.com
Book design by:
Arbor Books, Inc.
www.arborbooks.com
My Mom My Hero: Alzheimer’s—A Mother and Daughter’s Bittersweet Journey
Lisa R. Hirsch
1. Title 2. Author 3. Memoir
Library of Congress Control Number: 2013903463
ISBN: 978-0-615-77398-8
I dedicate this book to my mother,
Ruth Elian, for always loving me and
being there for me whether I knew it or not.
As Mother Teresa said,
“Not all of us can do great things.
But we can do small things with great love.”
My mom has Alzheimer’s. Out of her suffering with this disease, she has inspired me to write a diary of our journey together. Our relationship has blossomed into a true love affair. As a teenager I had wished for someone else to be my mother, but today I would never trade her for any other mom in the world. Each and every day she touches my heart. I’d love to share our story with you and what living with Alzheimer’s is all about.
Ten percent of profits earned will be donated
to Us Against Alzheimer’s.
Table of Contents
Introduction
February 20, 2011
Girl With a Curl
Spring, 2011
Loving the Mom I Never Appreciated
June 22, 2011
Trading Places, or Is Alzheimer’s Catching?
July 11, 2011
Birthday Dedication to the One I Love
August 8, 2011
What’s My Daughter’s Name?
August 24, 2011
Happy Birthday, Mom
December 18, 2011
Feelings, Oh So Many Feelings
January 16, 2012
Is This a Dream?
January 22, 2012
Is My Cup Half Empty or Half Full?
February 5, 2012
A Day Filled With Sunshine
March 9, 2012
Little Things Can Mean a Lot
March 17, 2012
Is This a Dream or a Nightmare?
March 30, 2012
Feelings of My Mom
March 31, 2012
Those Special Moments
April 8, 2012
Like a Miracle
April 22, 2012
In Mom’s World, Do I Laugh or Cry?
May 4, 2012
Does My Mom With Alzheimer’s Know It’s Mother’s Day?
May 13, 2012
The Distance Between Us
May 28, 2012
So Sweet and Tender
June 29, 2012
She Really Makes Me Smile
July 7, 2012
My Man, I Loved Him So
August 10, 2012
I Feel Mom Drifting Away
August 18, 2012
Glimmers of a Rainbow
August 25, 2011
Life Is Short—Be Happy
August 31, 2012
Because I Love You
September 6, 2012
What Becomes of the Broken Hearted?
September 11, 2012
Interviewing My Mom With Alzheimer’s
September 14, 2012
Is My Name Lisa?
September 23, 2012
Could This Be Magic?
September 28, 2012
Savoring the Moment
October 12, 2012
I Wonder What Mom Is Thinking
October 15, 2012
Sounds of Joy
October 19, 2012
Mom Really Melts My Heart
Introduction
This is a story of love, dedication, discovery, and transformation. It is the story of my mother-in-law’s journey into Alzheimer’s and the newfound love from a daughter to her mother.
Lisa and I don’t really know when the disease first started. Its effects are at first subtle and hard to discern. Looking back we can identify the first signs, but when they first appeared we were more bothered and baffled than sympathetic and caring.
This is a strange disease; impossible to treat, the sufferer slips into a world with diminished awareness and capacity. The family and caregivers go through their own journey. Starting off in ignorance, one is forced to face the reality of the disease and has the choice of denial or acceptance. There is no correct response. Each family will find their own way of coping.
Ruthie was always a cute, spunky spirit who freely expressed her opinions and doted on our son Logan. Her annual trips up from Florida were nice times to spend together, with her and Logan sharing bowls of popcorn as they watched his favorite movies. Over time, though, these trips became more problematic. She seemed less att
entive and more argumentative. What had been something to look forward to became something to get through.
Once we learned Ruthie’s diagnosis, my wife’s response started to shift. Lisa became a more caring and concerned daughter. Her daily phone calls to her mother and the caregivers defined her involvement and response. When I got home from my work at the VA Hospital, she would tell me what had transpired. On weekends, I often sat by and listened as Lisa had the speaker phone on. I heard the love and humor that flowed back and forth. Despite the disease, Ruth had not lost her charm and quickness of thought.
I remember saying to Lisa, “You should write some of this stuff down.”
Well, that’s what she started to do. In a little spiral notebook, Lisa noted her mom’s pithy remarks and her own emotional responses. Not long after that, she decided to start a blog. She posted her thoughts and experiences with Ruth weekly on Blogger and Facebook. Pretty soon people started to respond. It was amazing. Lisa started to receive comments and e-mails from all around the world: the United States, Canada, England, Spain, Germany, Russia, India, Israel, and many other countries. She realized what she had already known: this is a disease without borders.
Not only family members, but Alzheimer’s associations, caregivers, nurses, physicians, and support group members wrote to say how she had touched their hearts, how she was speaking for all of them. They especially liked her upbeat approach, choosing to celebrate the love she still had and which had grown immeasurably. Alzheimer’s can sap the energy and joy from family members, but Lisa remained energized. Any past ambivalence toward her mother had been transformed to love and devotion.
When she had a career in the fashion industry, Lisa would bemoan the fact that while I “made a difference in others lives,” she only designed and sold clothes. I would reassure her that fashion, too, could make a difference in a person’s life. Now Lisa is living her wish to make another kind of difference, in a meaningful and worldwide way.
Relationships are often like an equation. For Lisa and Ruth, the relationship is now stronger but also unequal. For one love grows, while for the other it fades. Regarding devotion, one gives more and one gives less. This is a true journey with many curves, hills, and valleys. What is most rewarding is seeing how my wife’s connection to love and support has immeasurably been transformed. For this I, too, am grateful and rewarded.
We hope you will be touched and inspired as so many of her readers have already been. We are all in this together.
—Bert Hirsch
Husband
Son-in-Law
Program Director, Psychosocial Rehabilitation and Recovery Center
Brooklyn VA Medical Center
February 20, 2011
Girl With a Curl
My mom is my hero today and forever. It all began many years ago when I was born in Brooklyn. I was told that at a young age, I was either singing, dancing, or shedding tears. My moods were never in between. I was either happy or I was sad.
My mom recited a special poem to me when I was a child, a poem that I will never forget. Although my mom has no memory left since she has Alzheimer’s, it amazes me that she is still able to recite it.
There was a little girl,
Who had a little curl,
Right in the middle of her forehead.
When she was good,
She was very very good,
But when she was bad she was horrid.
More recently, I was sitting in a park and saw a little girl with blonde, curly hair playing with her mother. I watched as she hugged her mother tightly. She must have been around three years old. I wondered if I had also done that with my mom when I was that young. I have no memory of it at all, but what flashed into my head once again was the poem that she always said to me. It brought much warmth to my heart and filled me with special memories.
There was a little girl,
Who had a little curl,
Right in the middle of her forehead.
When she was good,
She was very very good,
But when she was bad she was horrid.
Spring, 2011
Loving the Mom
I Never Appreciated
My mother, Ruth Esther Schnitzer, grew up in Brooklyn and married my father in 1942. She was blonde, pretty, and petite—just under five feet tall—and wore her hair in a pixie cut that suited her feisty personality.
Ruth’s parents left Russia to move to America for a better life. Her father went to work in a sweat shop in New York’s garment district, striving to give his children better opportunities than he had. With his encouragement, Ruth loved to read and learn. She continued taking college classes most of her adult life.
My mom gave birth to my brother Gil during World War II when she was just eighteen years old. She moved in with her parents when my father shipped out with the Navy. Mom worked at the military base, and my grandmother cared for my brother. When my dad got out of the service, Gil was two years old, and my grandmother and Mom were so protective that Dad could hardly have a relationship with him.
Naturally, when I was born five years later, Dad showered me with affection. I adored him as much as he adored me. He was carefree and upbeat, always telling jokes or singing show tunes. He spoiled me, and sometimes I wonder if that’s why Mom was so hard on me. Maybe she resented me in some way and felt jealous.
Mom was adamant that I should make the most of myself. She ordered summer reading materials and wouldn’t let me out to play until I mastered one lesson every day. I fought those lessons, especially the summer that she handed me particularly difficult assignments that turned out to be for children a grade ahead of me. I felt like I was being tortured, and I disliked reading for years afterward.
As a child and an adolescent, I built up resentments and anger toward my mother. I dreamed of a warmer, more nurturing mother to call my own. As I grew older, my feeling remained the same until my mom got Alzheimer’s.
After I was married and had a child of my own, I’d get excited whenever Mom came to visit from Florida. Then I couldn’t wait until she left because all we did was argue. She’d start fights with me and say she was never coming to visit again because I was crazy. I’d tell my husband that I never wanted to see her again, but every year the same pattern repeated itself. Why? What were we getting out of it? How is it possible that I can only realize how deeply I love her now, and couldn’t then?
I didn’t realize how far my mother’s Alzheimer’s had progressed until five years ago, when I flew down to visit and experienced a terrible shock. My mother, always proud of her appearance and housekeeping, was dressed in dirty, disheveled clothing. She looked like a bag lady. When I asked if she wanted to comb her hair, Mom picked up her toothbrush and used that. She hadn’t flushed the toilet. Her mirrors were so covered with dirt that it was impossible to see any reflection. Her kitchen cabinets and microwave were coated with food drippings. It was clear that she had no idea what food was in her refrigerator, if she had eaten, or how to use the microwave.
I tried to talk Mom into moving to New York. My dad had passed away several years before, and I thought she’d want to live closer to me, where I could also be able to watch over her. New York, of course is her childhood home. But she was steadfast in her determination to stay in her home in Florida where she’d been so happy with my dad. My brother and I had several discussions, and we decided that our mother needed someone to look after her.
Mom now struggles to remember the name of the man I’ve been married to for thirty years. She has signs posted around her apartment to remind her to do even the smallest daily routines: “Flush toilet,” “Brush teeth,” “Wear clothes, tops and bottoms.” Will her mind soon become a blank canvas?
Life can be strange. Today my mom, whom I once argued with every day of my life, has become a delight and inspires me with her strength, courage, and joy.
Our lives go by so quickly. We don’t get to pick and choose our own grand finales. We march through ev
ents that will become memories without stopping to examine them as they’re happening. More days, months, years are behind us, gone before we know it. Why should I make a big deal of my mother’s losing her memory when she does not? Like a child, Mom lives in the moment, and most of her moments are happy ones.
“Mom, if you could wish for anything you wanted today, what would it be?” I asked the last time I called.
“For my children to be healthy and happy!” she said with such joy in her voice.
If I could wish for anything today, I’d wish that Mom could grow old without any illnesses. Since I can’t have that, I am grateful for this new way of being with her. If my mother hadn’t gotten Alzheimer’s, I would never have learned to love her so unconditionally. All of the qualities that once drove me away—her energy, her courage, her wisdom, her strength—now draw me to her.
Mom, I dedicate this book to you and all the other families that are struggling with this disease called Alzheimer’s. My mom has truly become my hero. I love her so deeply and hope that she will never forget that as she slowly fades away.
TESTIMONIALS
Lisa,
Just wanted to send you a note to thank you for your inspirational blog. I read it last night when I needed to see another person’s perspective on their relationship with their mom with Alzheimer’s disease. My mom is newly diagnosed, and I am starting to come to terms with it. I am tired of feeling helpless. A lot of the information and stories shared by others are quite depressing, and to be honest, right now I need something positive. You have provided that by writing honestly about your loving acceptance of your mom and where she on her journey with Alzheimer’s today. Please keep sharing your story!
—Natalie
Hello Lisa,
I just happened to stumble upon your blog today. I want you to know you are very inspiring with your story and the way you’ve opened up about your relationship with your mom. My mom also has Alzheimer’s. She was diagnosed at the age of fifty-two. She is now fifty-six. My father and I are her full-time caregivers. I am struggling every day with trying to hold on to what little glimpses of her may show up. I truly just want to thank you for opening up and letting me in.