Author Cynthia Ryan offers a heartfelt glimpse into the experience of losing a parent to Alzheimer's disease. She shares the realities and heartbreak of her mother's experience, one that was both enhanced and complicated by their complex mother-daughter relationship and family dynamics.
Shy and distant, but also independent, her mother didn't often find joy in the roles of wife and mother. The trials of a scarred childhood, marked by poverty and an alcoholic father, made true happiness elusive for her mother. On Christmas Eve of 2000, Cynthia started to see noticeable changes in her mother. A devoted grandmother, she had never forgotten to buy presents for one of her grandchildren-until that day. What's more, she spent the day pouting, because the family was celebrating Christmas one day early. Over the coming months, her behavior grew increasingly erratic and forgetful; she became agitated more and more easily. Cynthia finally took her mother to the doctor, where everyone's worst fears were confirmed: Alzheimer's.
In this memoir, Cynthia shares their journey of understanding, forgiveness, blessings, healing, and renewed love. She celebrates her mother's life, even as it spiraled out of her control.
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A Daughter's Perspective on Her Mother's Journey with Alzheimer's
By Cynthia Ryan
iUniverse LLCCopyright © 2014 Cynthia Ryan
All rights reserved.
Lost at the Casino
We decided to take Mom to the casino. My sister, Marcia, and I felt that perhaps the stimulation of the sights and sounds would be good for her. Even more importantly, we wanted to give Dad a much-needed break from the caregiver role he so willingly took on. Let's face it, taking care of a loved one with Alzheimer's can be hell on earth. There is no simpler way to describe it. Yep, Mom had Alzheimer's.
Marcia and I agreed that one of us would have Mom in sight at all times. This way we too could have a little gambling fun instead of simply trying to babysit Mom. We plopped her down in front of a slot machine, put in a ten-dollar bill, and showed her which button to push. Having loved her Vegas trips over the years, Mom quickly fell into the rhythm of the gambling frenzy with a huge smile on her face. Marcia and I felt confident all was well and decided I would be the first to wander off in search of my own big win. So for the next couple of hours we took turns sitting with Mom, actually getting peeved that she continued to play on her original ten dollars, while we went through all the money we brought!
When it was getting time to leave, Mom announced she had to use the restroom. "Hang on a minute, Mom," I said, "I'll go with you." Both my sister and I turned to gather our things, including Mom's winnings—yes, I said winnings, on ten bucks!—and when we turned back to where she was standing, she was gone. Gone! In seconds, gone, just like the toddler whose mother turns her back for a millisecond, Mom was nowhere to be seen.
Marcia and I grabbed each other, shouting, rambling, blaming, and swearing. "What do we do? What do we do?" Then Marcia said, "Oh my God! Dad will never forgive us for losing Mom!" Well, that broke the tension. Marcia was more concerned over what Dad would think of us rather than the fact that we lost our seventy-five-year-old mother, who just happened to have Alzheimer's. The absurdity of it just cracked me up, and I started laughing. Then my sister was laughing, and soon we lost all control, hanging on to each other with tears running down our faces, and didn't even notice Mom standing right beside us. She startled Marcia with a tap on the shoulder, asking, "What's so funny?" It took us a full minute or two to pull ourselves together and to put Mom back together, as for some reason she had gotten into the habit of unbuttoning her blouse whenever she used the bathroom. Just one of many Alzheimer's "quirks" with which we would learn to deal.
Welcome to the world of Alzheimer's. Even though this event was somewhat comical, Alzheimer's is anything but. It is the epitome of ugliness. Not only does it affect the unlucky soul who is afflicted, but also his or her entire family and circle of friends. This disease causes pain, frustration, fear, anger, resentment, and guilt. It will destroy everyone in its path if you let it, not just the person it attacks.
Early on, my sister and I learned we had to develop an almost lighthearted acceptance of Mom's illness or surely we would have lost our minds. And anyone with a loved one who is ill knows you cannot lose it. You cannot afford that luxury. You must always be in control, or at least learn to fake it well. You cannot be weak or in denial. You cannot give in to the power of it or walk away from it. You must dig deep down inside and pull from your very soul the compassion and patience and strength you never knew existed—all in the name of love. How does one do that? For me, it was my faith. The power of belief, the power of prayer, is what kept me going, and I believe it was what enabled my family to survive (somewhat) intact.CHAPTER 2
Can You Hear Me, Mom?
Mom was in her early seventies when we began to notice slight changes in her behavior. Not just what was typical for someone of her age, such as forgetting names, dates, and times, but forgetting much more important details. And, oh, the misplacing of things! Mom became accusatory when she couldn't find something and often blamed Dad for hiding it from her. "Son of a b! Your father took my purse again." Mom never actually said the b word, just b, something my siblings and I often teased her about. "Just say bitch, Mom, and get it over with," I once shouted at her, for which I received "the look." Everyone knows what the mom "look" is. Mom also believed Dad was taking her money, so she began hiding it all over the house. It turned into somewhat of an Easter egg hunt for us over the years. "Hey, I just found fifty dollars in Mom's shoe!" I told Dad. "Ah, just keep it," he responded. Okay, that worked for me.
At this same time Mom's hearing was diminishing, which just exacerbated the situation. "You never said that," or "You never told me so," became her daily mantra. As far as Mom was concerned, we all spoke too quietly, the TV was on too loud, or there was a problem with the phone. Mom absolutely refused to admit she had a hearing problem, even after medical testing proved otherwise. After one doctor's exam, Mom actually told us he said she didn't need hearing aids!
I once called Mom asking for an aunt's new home address, and it turned into a nightmare! I can laugh about it now, and always do, but back then it was anything but funny. And so it went:
"Hey, Mom, I need Aunt Evie's address" (not her real name).
"Auntie's address. I need Aunt Evie's new address."
"What? Speak up."
"I can't hear you! This damn phone." (Mom had no problem saying damn.)
"Mom, I need Aun-teeee's ad-dress."
"I don't have your Tupperware." Click. She hung up.
I sat a moment staring at the phone and then burst into tears. I immediately called my sister. "Mom said she doesn't have my Tupperware," I babbled.
Truth be told, Mom never was the easiest person to get along with. She was actually quite an unhappy, distant woman who wasn't openly affectionate. A scarred childhood prevented her from feeling the joy and happiness most take for granted. So when Mom became unjustifiably upset or put out, I thought she was just being a bitch. Maybe that's too harsh. In a perpetual bad mood would be a better way of describing Mom. Don't get me wrong; I loved my mother. I just didn't often like her very much. These feelings later played a huge role in my having resentment over needing to help with her care. I was actually mad at her for getting sick. I know, shame on me. It took me a long time to realize that Mom did the best job she could as a wife and mother, and that some of her behavior came from fear of inadequacy and defensiveness.CHAPTER 3
A Troubled Childhood
Mom had a very difficult childhood—one of poverty and abuse by an alcoholic father. She, along with her parents and nine siblings, faced several home evictions and even had one house burn to the ground. There were hand-me-down clothes, too-tight shoes, unpaid bills, and many hungry nights. Mom's older brothers brought in some extra money while attending school, and my grandmother took in sewing and laundry from some neighborhood ladies. Any money brought into the home was hidden from my grandfather, else he would drink it away.
My grandmother was an extremely religious woman who demanded that her children follow in her footsteps. Mom found that same love and devotion toward religion and the church as Grandma and tried to pass it on to me and my siblings. Mom wore her faith like a jeweled glove until her dying day.
Grandpa couldn't be bothered with religion or the church, and his drinking only made matters worse in that regard. After his usual Saturday night binge, Grandma would quietly awaken her children in the early-morning hours, readying them for the 6:00 a.m. Mass, and scurrying them out their bedroom windows so as not to awaken their father. She'd then roll up pillows and blankets in their beds to make it look like good little sleeping children, just in case. Yeah, Grandpa didn't believe his family should waste time going to church; his faith was in the bottle.
Mom didn't often speak about her childhood with any of us, her children, as it seemed more of an embarrassment to her than a painful memory. Sometimes my cousin and I would eavesdrop when our mothers got together, hearing stories that were unsettling, to say the least. Mom always shushed her sister, not wanting us to hear. But I think more than anything she just wanted to forget. It was also very apparent to me, even as a young girl, that while Mom adored her mother, she held mixed feelings for her father. She wanted to love him—he was her daddy. But what I now believe she felt most was fear and dislike for him, and from this grew Mom's dislike of most men in her life. Wow! I just got that. My former therapist would be so proud!
Many years later Mom's religious beliefs came into play when her long-absent father became ill. As the fifth commandment states: Honor thy father and mother. So that's what Mom did. She and my aunt, along with my cousin and I, would go care for Grandpa every so often. Mom cleaned his disgustingly filthy apartment while Auntie went grocery shopping. My job was to sit and keep Grandpa company, while my cousin did her best to make me laugh with mocking faces behind Grandpa's back. The snot! Grandpa's job was to complain and to be mean and bossy.
I just didn't get the whole thing. My then eleven-year-old brain couldn't understand how Mom could be so nice to this man—this old, 115-pound stranger who lived in a tiny upper flat with his ankle-biting dog (I love dogs; just never this one) and who hadn't taken the time to even speak to Mom in over fifteen years! This man, this father, who, three days before my mother's wedding, informed her he didn't feel like walking her down the church aisle. As a matter of fact, he really didn't feel like going to the wedding at all! I didn't really know him; I certainly didn't like him, and I hated the way Mom and Auntie allowed themselves to be treated by him. On the way home from one such visit I boldly asked, "Mom, how can you be so nice to him? He's mean." She looked at me with such sadness and said, "He's my father." And that was that.CHAPTER 4
Christmas Eve 2000
It was Christmas, Mom's favorite time of the year. She always celebrated by going overboard with tastefully done decorations, cooking a feast for our family to enjoy, and being terribly generous with gift giving. This particular Christmas, 2000, was different.
My siblings and I arrived at our parents' home, with our families, expecting the usual. Instead, what we got was a lot of tension and nasty looks being thrown back and forth between Mom and Dad. They had been arguing. Dad looked disgusted, and Mom looked angry. Very quickly we found out that Mom was upset we were celebrating Christmas on the eve instead of the actual day. This never bothered her before, and we were all very confused. To make matters worse, she had refused to wrap any gifts. Again, it wasn't Christmas Day. This was the beginning of very unreasonable thinking on her part. Marcia took Mom upstairs, where she not only was able to convince Mom that the most important thing was that we were all together (even our brother, Paul, and his wife, Anne, had flown in from Maryland), but she also talked Mom into letting her help wrap the gifts.
The rest of the day went fairly smoothly, with Mom and Dad relaxing and getting into the Christmas spirit. That was until it came time to open gifts. As they were being distributed, I asked Dad where my son's gifts were. He, Matthew, was home with the flu, so I wanted to make sure to set his gifts aside. Mom was in the kitchen making coffee, so Dad got up to look under the tree. I will interject here that the purchasing of gifts was totally on Mom, so Dad had no clue. Plus, Mom always stayed in the kitchen during the opening of gifts even though she received numerous requests to come join us. It was a yearly event.
"Mom, we're getting ready to open gifts. Come into the living room."
Twenty minutes later: "Mom, the presents are all passed out. Please come into the living room."
Finally, Dad would just tell us to start opening, with Mom always complaining afterward that she didn't get to see everyone's response to the gifts. Really? This was totally a "Mom" thing and not an "Alzheimer's" thing. Anyway, back to the search for Matthew's gifts.
As Dad was on his hands and knees searching under the tree, he kept calling out to Mom, asking where my son's gifts were. The longer he looked, the more flustered and anxious he became. I said to him, "Dad, relax. They've got to be here somewhere. Mom wouldn't forget him." Which is exactly what she did do. Mom forgot to buy gifts for my son, her grandson.
When Mom finally came into the living room, Dad practically jumped down her throat. "Harriet, where are Matt's gifts?" He was upset and yelling, which made her upset. I stood staring at her, trying to figure out what the hell was going on. My daughter, Kelly, had all her gifts piled up by her feet, as did everyone else. Matthew's gifts must still be upstairs, I thought.
I looked from Mom to Dad and back to Mom. She had a very strange look on her face, like she couldn't understand why Matthew's gifts were missing. I could almost see the wheels turning in her brain. She was actually muttering while trying to come up with an explanation. Everyone in the room looked uncomfortable. Finally Mom said to me, "I was going to call you to find out what I should buy for him this year."
"When, Mom?" I kind of shouted. "When were you going to call me? It's Christmas!" I was so angry I couldn't see the look of confusion and embarrassment on her face. Of course, not too long afterward we knew what was happening. Mom was ill.
Unfortunately, my anger stood in the way of giving Mom any understanding, and I just had to leave. I gave my husband, Jim, the look that tells him not to question, just do what I ask, and we gathered our gifts and our daughter and proceeded to leave. Dad came up to us, crying. Crying! I don't care how old you are, no one wants to see his or her parent cry. He said, "Your mother has been acting very strangely lately; I've been meaning to talk to you kids about it." Then he promised to make it up to Matthew. "Don't worry about it, Dad," I said. "I'll think of something. And we'll talk more about Mom soon."
Every time I think back on this day I feel guilty for not realizing something was wrong with Mom. Oh, she could be difficult, and we didn't have the closest of relationships, but this was way out of the norm for her. To think how she must have felt hurts my heart, and I wish I could have talked to her about it. Mom never was very good at sharing feelings, though, so I wasn't open with her about mine.
Excerpted from Losing Mom by Cynthia Ryan. Copyright © 2014 Cynthia Ryan. Excerpted by permission of iUniverse 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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Table of Contents
Chapter 1 Lost at the Casino, 1,
Chapter 2 Can You Hear Me, Mom?, 4,
Chapter 3 A Troubled Childhood, 7,
Chapter 4 Christmas Eve 2000, 10,
Chapter 5 The Chicken Dance, 14,
Chapter 6 Dr. X Drops the Bomb, 17,
Chapter 7 Are You Trying to Kill Me?, 21,
Chapter 8 Let's Clean the Closet, 23,
Chapter 9 Constant Battles, 26,
Chapter 10 Cinderella, 30,
Chapter 11 But Today Is Saturday, and Tomorrow Is Sunday, 33,
Chapter 12 No More Driving, 36,
Chapter 13 Scheduling Mom's Life, 38,
Chapter 14 Family Reunion, 41,
Chapter 15 Letters to My Brother, 45,
Chapter 16 Faucet Fixation, 49,
Chapter 17 There's Stuff in My Soup!, 53,
Chapter 18 Dealing as Best We Could, 56,
Chapter 19 All about Me, 59,
Chapter 20 Church and Childhood, 97,
Chapter 21 Now What?, 102,
Chapter 22 Confusion Sets In, 105,
Chapter 23 Dad Loses Mom, 108,
Chapter 24 Alzheimer's Confirmed, 110,
Chapter 25 In-Home Nursing Care, 113,
Chapter 26 The Damn Wheelchair, 116,
Chapter 27 Something's Gotta Give, 118,
Chapter 28 Abandoning Mom, 121,
Chapter 29 Are You a Resident?, 126,
Chapter 30 Mom Has a Sense of Humor?, 129,
Chapter 31 Third-Floor Klepto!, 132,
Chapter 32 A Lesson I'll Never Forget, 134,
Chapter 33 Beauty Image, 137,
Chapter 34 Coloring Books Make Good Babysitters, 140,
Chapter 35 Happy Mom, 143,
Chapter 36 Talking Gibberish, 146,
Chapter 37 Who Are We?, 149,
Chapter 38 Superstitions and Mom-isms, 154,
Chapter 39 Where Are You, Mom?, 157,
Chapter 40 Grandma and Babies, 159,
Chapter 41 Mothers and Daughters, 163,
Chapter 42 A Son Is Born, 167,
Chapter 43 Visiting Mom, 170,
Chapter 44 The Great-Grandchildren's Visit, 173,
Chapter 45 Entering Year Four at the Facility, 177,
Chapter 46 Mom Breaks Her Hip, 179,
Chapter 47 Mom Goes Home, 182,
Chapter 48 A Gift from God, 184,