When the author’s widowed mother in Florida develops a dementia, he becomes her long distance caregiver. Using humor and compassion, this memoir is a “portable support group” for caregivers everywhere.
DEMENTIA DIARY
A Caregiver’s Journal
By
Robert Tell
(Excerpts — Copyright ©2008)
I WANT YOU TO HAVE THESE LENGTHY FREE EXCERPTS OF MY BOOK: “DEMENTIA DIARY”
Of course I’d love for you to buy a copy and I hope you’ll consider doing that after you’ve read a chapter or two for free.
But if you wish you may keep the entire downloaded copy of the excerpts and even share it with others. No obligation—No charge!
This is my way of introducing you to a book that I hope will brighten your days, as it has for so many other caregivers.
PRAISE FOR DEMENTIA DIARY
“As the distraught family member of an Alzheimer’s sufferer I found this book to be OUTSTANDING—entertaining—informative…a Neil Simon laugh and cry scenario. Other books miss the emotional reality that engulfs both the afflicted and the caregiver. Dementia Diary fills this gap with dignity and warmth. Every reader will benefit greatly, as did I.”
—Tom Cranshaw, CEO, Tri-County Mental
Health Services, Kansas City, MO
“This sensitive and well written semi-autobiography is unusual for its male perspective and a must read for all who are going through the challenging years of caring for an elderly parent. It educates the reader about many significant issues such as geriatricare management, driving and preneed funeral planning–to mention just a few.”
—Dr. Seth B. Goldsmith, Author of Choosing A Nursing Home (1991 Book of the Year, Library Journal) and Former CEO of the Miami Jewish Home and Hospital for the Aged
CONTENTS
Included here in these excerpts:
PREFACE
WHO IS MINNIE SWEET?
SOME ARE CALLED
DYING TO SHOP
SHOPPING TO DIE
DRIVING AWAY THE BLUES
The rest of the book:
HCFA HELPER
MOVED TO TEARS
PLAYING TO A PACKED HOUSE
SQUEEZING 10 LBS OF POTATOES INTO A 5 LB SACK
TRUTH AND CONSEQUENCES
ALTERNATIVE LONG DISTANCE SERVICE
BOOMERANG BUBBE
SHOULD A CAREGIVER BE A CARGIVER?
A HAPPY HOLLOWGRAM
RESISTED LIVING
NORTHWARD HO
“HOME” SWEET HOME
LONGEVITY
LATE STAGE DEMENTIA
PERPETUAL EMOTION
PREFACE
This is neither a guidebook nor compendium of advice about how to cope with caring for an aging parent or spouse with dementia. There are literally hundreds of such tomes available. My hope, instead, is that this book will become a kind of “portable support group” for caregivers.
Dementia Diary is first and foremost a memoir about what it’s like to be the only child, a son, and the caregiver of a widowed and cognitively impaired mother who lives alone half a continent away.
Those who know my family will recognize that the name I’ve given my mother in this book, Minnie Sweet, is not her real name. Why did I change her name? I have two reasons.
First, even though the narrative is largely autobiographical, some facts have been fictionalized for effect. Second, and more important, writing this memoir has been one of the most emotionally difficult projects I have ever undertaken.
In order for me to attempt it with even a semblance of objectivity, I required an artifact. Using fabricated names was that artifact—it was a distancing technique that enabled me to approach this powerful topic with safety, compassion and humor. So all of the names in this memoir are fictitious, including my parent’s and mine. This worked for me and I hope it works for you.
It is also possible that someone with one of the names I used may read this book. If so, please understand the happenstance involved, and accept my apologies. Any resemblance to any real persons living or dead is purely coincidental.
I also intend for the institutions that served my mother to remain anonymous. She was fortunate to have found her way to some wonderful facilities and programs that, I believe, extended her years and the quality of her life. However, for consistency with the “semi-fictional” nature of this memoir, these institutions are best left unidentified, and any resemblance to actual facilities and programs is purely coincidental.
A word about Mom’s long, slow descent into the opaque fog of multi-infarct dementia: This is a different syndrome than the well-known dementia called Alzheimer’s disease, and it can be caused by frequent “silent” mini-strokes.
Here is the way a physician described the condition to me: the “victim” of such events may not be, indeed usually is not, aware that anything out of the ordinary has occurred. Neither are his or her significant others.
Perhaps there is momentary weakness, headache, or dizziness, but nothing major. Over time, however, enough damage is done to the brain that symptoms begin to appear. While some of these manifestations are unique to this syndrome, all dementias have certain behavioral commonalities that will be recognized in these pages.
I address this book to readers who are actively involved in care giving for loved ones with dementia, to those who have had this responsibility in the past, and to those who expect to face it in the future. Perhaps you will find a nugget here and there with which to identify, and from which to draw some comfort and support.
I also address this book to professionals charged with the care of persons with dementia. Perhaps it will provide a bit of insight into the perspective of a family member attempting to understand and deal with a loved one’s loss of identity, memory, and cognition.
The inspiration for this diary was a talk that I was invited to give to a conference of caregivers sponsored by an adult day care program for people with dementia. The agenda included speeches by a psychiatrist and a geriatrician, followed by a panel of four caregivers reporting on their own experiences.
The purpose was to educate, inform and support an audience of caregivers who were struggling, largely in isolation, with all sorts of issues, and to provide an opportunity for them to share experiences and to ask questions.
At first, I didn’t want to make this presentation. I thought it would be an improper invasion of my mother’s privacy to talk about her in a public forum. Besides, it was an emotionally powerful subject and, even though I had done a lot of public speaking, I wasn’t sure I could handle this one in a calm and professional manner.
But the program sponsors prevailed. All of the other panel participants were women, they told me. They said that the program needed a man who was willing to share his experience as a caregiver, as well as his feelings. Men don’t easily do this kind of thing, they said, so “please,” they pleaded, and finally wore down my resistance. They pointed out that lots of men are caregivers and that these listeners would appreciate hearing a presentation by a man about this sensitive subject.
In retrospect, they were right. The male caregivers in the audience, and there were many, directed most of their questions to me, and quite a few approached me afterwards to thank me. They suggested that a book describing my experience as a male caregiver is urgently needed in the marketplace. Existing books, they said, do not address their feelings and unique responsibilities as sons and husbands.
I also asked many of the women present if such a book would find a readership among female caregivers. Interestingly, they thought it would—that women, too, would benefit from reading a man’s point of view on the care giving experience.
I learned a lot that evening. The presentations and audience questions taught me that the kinds of bittersweet anecdotes described in Dementia Diary are the common lot of all who deal with the reality of dementia in a loved one.
This is a disease that knows no boundaries. It is blind to the categories in which we usually place our fellow human beings. It can occur at the age of 55 or 85. It can happen to Blacks, Whites, Hispanics, Asians, Jews, Christians, Muslims, males and females, rich and poor. It has not spared ex-presidents.
Tears are shed by husbands and wives, sons and daughters, brothers and sisters—in fact anyone responsible for the care of a loved one with dementia. I hope that this book will help all such wonderworkers to understand that they are not alone. My mother would want it that way.
In the pages that follow, her story has been deliberately paced to mimic the unhurried rhythm of her gradual slide into cognitive disability, barely perceptible on a day-to-day basis, but dramatic and frightening when viewed through my own retrospectoscope over the long term.
Some chapters, especially the early ones in the book, may not reveal Mom’s (Minnie Sweet’s) growing deficits to the reader. Some of the anecdotes may seem like the normal foibles of an aging woman rather than a person with a serious dementia. That’s what I thought too.
It’s only when we get to the later stages (or later chapters) that we can see, with hindsight and in the light of her full-blown memory impairment, that the signs and symptoms were there from the beginning.
Keep in mind, also, that the young Minnie Sweet would have been mortified by many of the attitudes and behaviors of the elderly Minnie Sweet. We would have had to explain to her, just as we ourselves had to learn, that the latter was part of the disease process, and not her true personality and character.
Finally, it is my wish that the reader will see beyond the sadness, tragedy and, yes, comedy sometimes associated with the evening hours of life, and will recognize that dementia, while terrible, does not diminish the essential humanity of the afflicted individual.
ROBERT TELL, Farmington Hills, Michigan
WHO IS MINNIE SWEET?
My name is Jerry Sweet and it is my sweet pleasure to be sharing this story with you. That’s right, Jerry Sweet—Sid and Minnie’s only child. I’ll be your tour guide for this entire tale.
I assume, if you are reading this, that you are a caregiver or, if not, that you know someone who is. Either way, I think you will be able to relate these vignettes to your own experience and observations.
Throughout this narrative, I have tried to document the shifts in Minnie’s slipping cognition. My purpose has been to demonstrate, with anecdotes and description, the various stages in her disease as it developed from its subtle beginnings to the present time.
Most of these pages track Minnie’s life after the age of seventy-seven when Sidney died and her cognitive deficits were exposed. However, for you to truly appreciate the extent of the damage to this previously vital and energetic woman, you need to meet her in her younger years.
So let me introduce you to Minnie Sweet in happier days before her dementia came calling.
Minnie’s history was actually rather typical. In the early 20th century, millions of immigrants from Eastern Europe could tell a similar tale. She was born in 1913, in Vilna, Lithuania, one of the three children that beat the odds and survived. Besides Minnie, there was her older sister Beverly, and a brother, Henry. Four other siblings died before reaching their first birthdays.
In spite of primitive pre-natal care, non-existent well-baby care, poverty, malnutrition, and the daily violence that permeated her world, Minnie decided to live. It was an early example of a biological hardiness that was to serve her well in the years ahead.
When Minnie was two years old, economic decline and anti-Semitic harassment in Eastern Europe were growing more serious day by day. Minnie’s parents (and my grandparents), Morris and Rebecca Goldberg, decided to escape these dangers and come to America.
They arrived at Ellis Island in 1915, terrified about the possibility of being sent back by the United States authorities. Minnie had rickets, a nutritional disease prevalent at the time among the children of the immigrant poor.
A deficiency of vitamin D and/or calcium was the cause, but it was easily corrected if caught in time. However, it affected bone growth and it was not uncommon for would-be Americans to be shipped back for this, or for even less serious health issues.
Luck was with the Goldberg’s that day. They passed through the inspection easily, breathed a big sigh of relief, and settled in the Brownsville-East New York section of Brooklyn.
Other relatives also immigrated to that location, and it was fast becoming a cultural center for thousands of Jewish refugees that shared the Goldberg’s history, concerns, beliefs and ethnic background.
Life was economically poor, but socially rich. Morris worked in the needle trades and Rebecca stayed home to have one more child, a girl named Charlotte, and to maintain a home for her family. Surrounded by siblings, cousins, aunts, uncles, and other family and friends, Minnie thrived. She became a real American girl. Soon the flapper years were happening, and the Great Depression was still in the future.
Attending college, or even completing high school, was a stretch for most new Americans, especially girls, back then (although Minnie did feel much pride when, decades later, she earned a GED high school equivalency diploma). Rather, it was expected that young people would work to help support the family.
And Minnie did. She became a cosmetologist and manicurist, and went to work for Mme. Sweet’s Beauty Salon. It wasn’t long before the boss’s son, Sidney Sweet, noticed her—much to his mother’s dismay. Notwithstanding her objection to Sidney’s fraternizing with the help, a romance blossomed that culminated in a marriage in 1933.
In spite of the Depression, Minnie and Sidney pursued the American dream and became a happy, optimistic couple. They were embraced lovingly by one and all—except by Mme. Sweet, who did everything she could to undermine the relationship. She eventually accepted the inevitable, but not before enabling a lifelong bitterness in her daughter-in-law, who never quite forgave her.
In those days, the sport of boxing was a pathway out of poverty for many immigrant young men, and fighters such as Jack Dempsey and Barney Ross were their role models. Dreaming of money and fame, Sidney Sweet decided to try his hand at prize fighting, but he soon had second thoughts when his nose was broken in the ring.
In 1937, I came along and that changed everything. As a new dad, Sidney now needed to make a steady living. So he took his squashed nose out of the ring and joined the electrician’s union. Minnie became a full time mom lavishing love and attention on her only child.
In 1946, Sidney traded his blue-collar shirts for an entrepreneur’s portfolio. He gave up being a master electrician in order to open a small factory for the manufacture of leather novelties.
When I was nine years old, Minnie felt free to begin her new career as the well-organized and capable foreman of the family’s budding manufacturing business—and she was terrific. She was the chief operating officer of the business, the human resources department, the bookkeeper, and the detail person, while Sidney concentrated on product development, sales, and production policy. They were a great team.
So Minnie and Sidney settled into a life surrounded by warm and stable family relationships and friendships, and they began to experience some of the economic success of post-war America. They moved their home multiple times in the 1940’s, 1950’s and 1960’s, each time into a “better” Brooklyn neighborhood. America was being good to these refugees from European poverty and hate, and their patriotic feelings were very strong.
As the economy of the late 1960’s overheated, it ultimately reached the working and lower middle classes. It seemed to the Sweets that everyone they knew had great investments and a winter home in Florida, and they wanted onto this bandwagon.
Minnie and Sidney began “snow birding” to Southeastern Florida in the late 1960’s to see if they might like it. It didn’t take long for them to become property owners and permanent residents in this fast developing region.
Now Minnie really came into her own. She began to apply her considerable organizational skills to various non-profit leadership activities in New York and in Florida. She discovered a love and a talent for communal affairs and accepted one assignment after another.
Matron of the Eastern Star; founder and president of at least three Hadassah chapters; member of the town’s library board and its Director of Volunteers; leadership roles in B’nai Brith Women and Jewish War Veterans—and these are just for starters. It was these organizations that supplied the deep and lasting friendships that blessed Minnie and Sidney for the several decades of their lives in Florida.
Of course, the idyll I’ve been describing had to end. Even as Minnie multi-tasked and spread her social wings across Southeastern Florida, something was changing in her brain and personality. That something was mistakenly assumed by those closest to her to be excessive stubbornness and selfishness. We were right in what we observed, but wrong about the cause.
In 1990, Sidney died and Minnie’s descent down the “slippery slope” of multi-infarct dementia accelerated. Today, in 2005, she has not yet reached the base of this slope, but she is certainly nearing the end of her journey.
At first, when she was beginning her slide, none of her loved ones, including me (especially me), understood that her sometimes difficult and abrasive behavior was part of a progressive disease process.
Today, her illness is obvious. Looking back, milestones in her decline can be identified. The various chapters of this book are intended to give life to the circumstances surrounding these turning points.
At each of her transitions, whenever Minnie reached a new low in functioning, I thought that she could not decline further and still remain “alive.” Each time, it was like a mini-death. Each time, I grieved anew.
Often, just when I had finally made my peace with her new level, she would rally and seem to regain ground that she had lost. When this occurred, I usually allowed myself to be duped into believing that she was not as bad as I had feared. Each time, though, something soon happened to highlight Minnie’s new deficits.
Whenever I thought that she could not possibly lose additional cognition and continue to function as a viable human being, it turned out that she had not yet reached bottom. It seems that there is no conclusion to the deterioration process, other than the grave.
As I write this, Minnie is getting ready to experience her ninety-second birthday. No one close to her ever expected her to live so long. That she did so is both a blessing and a curse. For her more than for me.
Dramatic changes took place in her in the years since Sidney died, changes that became more noticeable and more frequent over time. She gradually became mild and amiable, non-confrontational, and unlike the agitated Minnie that emerged from mourning her husband’s death.
Observing these changes in the early stages of her dementia, I was forced to marvel: is this the mother who made me crazy all those years when her emotions were out of control? Or is this gentle and loving paragon of a happy old age the true, underlying person?
Did the psychotropic drugs she took mask her authentic nature or, conversely, did these medications permit the real, kind, and thoughtful Minnie to shine through at last? To what extent is personality only chemistry? Who is the real Minnie Sweet?
In 1997, Minnie moved up north to be near family. Thankfully, she is still among us. Of course, no one knows know how much time she has left and, as she said long ago, she has “longevity.” Every day that goes by, however, sees further diminution in her capabilities.
When she first came to live near me, I visited several times a week for an hour or so and, whenever possible, took her out of the institutional environment. Later, when I could no longer take her on outings, she could still reminisce, share memories, look at family photos, sit outside in nice weather, and maintain a reasonable conversation.
Even the telephone was a useful medium for staying in touch. Today, our phone conversations are no more, and my visits have become less frequent and shorter. She is thrilled when she sees me and, remarkably, still knows who I am.
Occasionally, she will respond to my questions with one-word answers. More frequently, she says nothing. If I stop talking, we sit in silence. Soon, with me holding her hand, she falls asleep in her wheelchair.
Yet, until recently, Minnie kept radiating love and happiness. She sometimes still does, although less often these days. Does her life have quality? Who can say?
Before she came up north, I would have argued that no one in her current condition could enjoy life. I would have said that I’d never want to live in such circumstances. Today, I’m not so sure.
Every moment of every day is new to Minnie Sweet. She still smiles a lot. Her dentures are frequently missing or lost and, like an infant, she shows a lot of gums—but she’s quick to smile…and she still blows kisses to everyone.
Quality of life? What is that? Whatever it is, for most of her time here, I think Minnie had it.
SOME ARE CALLED
One Sunday morning in December 1990, I was enjoying the quiet isolation of my business office while trying to clean up the loose ends of a hectic workweek. No one was around and I was sailing along, making great progress.
I was feeling particularly happy. Business was booming. Several new contracts had been faxed in late Friday afternoon, accounts receivable were up to date, major projects were moving well toward completion, and I was beginning to think about heading home.
“Ring.” It was the phone. It didn’t actually ring but, instead, made that bone jarring electronic sound that has replaced the mechanical bell of older telephones (When did that triumph of 21st Century technology occur?). There is no word yet invented in the English language to adequately describe that sound. So…
“Ring,” will have to do.
It took me several moments to react. After all, who could be calling a business office on a Sunday morning? It must be a wrong number, I thought. I didn’t expect my wife, Nadine, to call. She knew that I preferred to work undisturbed on weekend office visits. I debated not answering it, but the so-called ring was persistent and, finally, as much from curiosity as anything else, I gave in.
“Hello?”
“Jerry?” It was Nadine’s voice.
I decided to be flippant. “You were expecting, maybe, Woody Allen?” I quipped, to let her know that I didn’t mind the interruption. “What’s up?”
The first sign of trouble was the silence at the other end. It was only a moment, but it was long enough to send me a signal. Whatever it was, Nadine was either reluctant to say, or else she did not know quite how to proceed.
“Jerry, I’m sorry to bother you. I know how much you…”
“It’s Okay, Nadine. I’m almost done for today. I was just wrapping up. I’ll be home in half an hour.”
“Oh,” and then silence for another interminable moment. Then, “Listen. It can wait. Just come home.”
All my antennae were up now. “Nadine,” I said. “I’ve got a minute. You called for a reason. So now I’m curious. What’s happening?”
“Really, Jerry, it can wait. If I knew you were getting ready to leave, I wouldn’t have called.”
Now I was getting alarmed or annoyed. I wasn’t really sure which. Probably both. There was something in Nadine’s voice that scared me.
“What’s with all the mystery?” I asked. “Don’t make me crazy. You called me, so what is it that couldn’t wait before; and, now, all of a sudden, it can?”
“Your Aunt Charlotte called.”
This was my mother Minnie’s younger sister, my favorite Aunt, and the closest thing I had to a sibling. She called frequently, but not usually on Sunday mornings.
I didn’t know the details yet, but I was beginning to guess where this conversation was going. Hoping that I was jumping to false conclusions, I asked,
“Charlotte? What did she want? Is everything Okay in Florida?”
“She just called and asked me to contact you and ask you to come home.”
This was getting stranger and stranger. I was starting to understand how a district attorney must feel when cross-examining a hostile witness.
My poor wife was clearly in distress. I was not yet completely conscious of the fact that what she had to say would hurt me, but my instincts were figuring it out fast.
“Nadine, come clean,” I begged. “Why did she ask you to do this?”
“She asked me not to tell you on the phone. She just said to get you to come home as soon as possible.”
Bingo! Minnie had been ailing recently with chronic obstructive pulmonary disease, congestive heart failure, anxiety attacks and depression, high blood pressure, and spinal arthritis.
So now I thought I knew why Nadine was calling. We had often discussed the relative issues associated with the loss of either of my parents in terms of who might go first. Minnie always seemed to be the more fragile of the two, so I was quite sure of the answer when I asked quietly, holding my breath.
“It’s my mother, isn’t it?”
“No.”
Oh, oh. That didn’t leave a lot of alternatives. Still, I asked, hoping for another negative, “My father?”
“Yes.”
Pause.
“Dead?” Please God, have her say “No.”
“Yes.”
The room began to spin. I said nothing. I couldn’t speak. I just sat there holding the receiver. From somewhere deep inside a tremor started and worked its way outward gathering momentum as it migrated. Soon it was forcing its way up through my chest and out through my throat. A huge sob broke forth surprising me with its power.
“Are you alright?” Nadine asked, her voice barely a whisper.
“No,” I replied. I wanted to say more but choked on my words. I just sat there and tried to fight the sobs, but it was impossible. They consumed me. Nadine sat patiently on the other end, saying nothing, waiting for my lead. Finally, when the spasm ended, I asked,
“How?”
She filled me in on what Charlotte had told her.
“Sears?” I repeated.
“Sears,” she said again.
“Returning a rug?” I repeated. I had heard her, but it was a comic twist to a personal tragedy, and very hard to absorb.
“Returning a rug,” she repeated, and both of us started to laugh. In between the tears, we laughed until it hurt. Feeling guilty about the levity, but unable to ignore the irony in the situation, I laughed until I cried. Then, emotionally spent, I said,
“How’s Minnie taking it? Did Charlotte say?”
“Not good. She’s at Charlotte’s apartment. Charlotte says she was crying hysterically, but she’s sleeping now.”
Another deep breath. It was hard for me to talk. “Call the airlines,” I managed to croak out.
“It’s done. We have a 9:05 am flight tomorrow. I’ve called the kids too. They’re all planning to go.”
I shook my head to try to clear it. “It’s all happening so fast. I can’t believe he’s dead.”
No response from Nadine for a moment. Then, “So, are you coming home now?”
I nodded, although there was no one that could see me. “I’ll be home in twenty minutes,” I said.
“Will you be okay?” she asked.
“I think so. Listen, did you really believe you could get me home without telling me the truth?”
“It seems pretty silly now,” Nadine replied. “Charlotte was insistent that I shouldn’t say anything on the phone, that I had to get you home one way or another first. It seemed like a good idea at the time.”
“Nice try!” I said. “See ya soon.”
DYING TO SHOP
When Minnie and Sidney Sweet retired to Florida around 1970, he was in his mid 60’s and she in her late 50’s. They were young retirees. Sid sold his small manufacturing business, and the building housing it, for just enough money to promise a comfortable, if not opulent, lifestyle.
So they took the plunge. They left their only son. They left their daughter-in-law, and their three grandchildren. They left siblings, cousins and lifelong friends, and they bought a condo in a Florida retirement village.
You know the kind. Two bedrooms. Two bathrooms. A living room leading to a Florida room (porch, to you) that looked out at the seventh hole. A small kitchen (who cooks? It’s cheaper to eat out with the Early Bird)—and insufficient closet space.
The community boasted a full time resort atmosphere complete with clubhouse, swimming pools, tennis courts, golf course, transit system, and security gate. And, of course, shuffleboard. The ubiquitous shuffleboard. The Sweets never looked back!
The stock market decline of the 1970’s took the glow off the carefree nature of their relocation. It was a disappointment for Sidney, and one that attacked his self-image as a provider and protector of his family.
Even though he had no personal control over what was happening to the economy, nothing could convince him that their troubles weren’t his fault. For Minnie, it was a shock to her sense of security. Her verbal expressions of these feelings did little to help Sidney overcome his guilt feelings.
Still, the Sweets had enough money left, when combined with Social Security and Medicare, to maintain a modest but adequate existence. So they survived. Actually, they thrived. In spite of the economy, they soared. The years flew by. They joined every charitable organization they could find. So did all the other newcomers.
The Sweets were warm and affable people. They provided a happy home for me as a youngster and, after I married, a loving embrace for the new family that I was creating.
It was not surprising that they made many new friends in Florida. People liked and respected them. Sidney’s sense of humor and his integrity were widely admired, and he was a role model that many aspired to imitate. This was especially true for his son.
Minnie’s enthusiastic and outgoing nature attracted people to her like bears to honey. They played golf, went to meetings, played golf, enjoyed social events, played golf, had doctor appointments (of which there were many), played golf and, of course, they shopped.
Shopping, for most of us, is about meeting our basic needs and desires for food, clothing, gadgets and luxury items. For some people, however, it has other satisfactions and it fills other needs.
It may be a social event with emotional overtones—or a way to fill time in an otherwise boring life—or even, for some, an addiction that brings cheer to an otherwise dreary disposition. This can be as true for snowbirds and retirees of the Sunbelt as it is for the rest of the population—maybe even truer.
Consider a typical day in the life of the Sweets. In the morning they’d shop for, say, a toaster oven. They’d buy one, take it home and plug it in. They’d then enjoy a nice lunch with slices of toast made in their new purchase.
But there’d be a problem. The bread might be browning less evenly than expected. Maybe it would even be getting a little too dark and crisp along the edges. They wanted a perfect piece of toast, something that the new oven seemed incapable of producing.
Too bad! They’d have to bring the toaster back. They’d return it to the store for a refund and then, of course, would proceed to buy something else that would probably have to be returned the next day. And so it went. Day after day after day.
And the Sweets were joined in these daily shopping adventures by thousands of their contemporaries. One wonders how the retailers managed to stay in business.
If this description seems amusing, consider the other side of the story. Shopping can provide a brief escape from the preoccupation with death and disease that is the constant companion of the seniors that populate these retirement communities.
Their adult children “up north” may still believe in the illusion of their own immortality, but our shoppers know better. And yet, these older Americans somehow manage to mix a laugh or two with the bad things that happen daily to their neighbors, friends, and to themselves. It’s how they cope with their reality.
A case in point: While there isn’t anything happy in the tragedy about to be described, there is a bit of the ironic. Something that may elicit a smile or two even as it evokes the tears. Here’s what happened.
One day in 1990, Minnie and Sidney Sweet decided to go to a nearby Sears & Roebuck store. It was early and the store just opened. They entered the store and, as they walked toward the escalators, Sidney died. That’s right, he died. On the spot.
One minute he was walking alongside Minnie and the next he was laying face down where he had pitched forward onto the floor. With no sound, no cry of pain, nothing. His complexion was grey, and he was gone.
Later, a doctor was to say it was a massive heart event, that Sidney had felt no discomfort and never knew what happened. The doctor said it was a good way to die, easy on the deceased, but hard on his loved ones. It was indeed very hard on his son (and I should know), but it was hardest on Minnie.
Imagine her horror. She had spent all of her married life almost totally dependent on her husband. She didn’t drive (more about that at another time), was rarely separated from him, and drew her emotional strength and most of her identity from him. It was not an uncommon role for women of her generation.
Also, her dementia had started. Not that anyone close to her, or she herself, recognized that her exaggerated personality quirks and her growing memory lapses were due to illness. They were just “Minnie,” and what could you do?
Perhaps Sidney knew something was amiss. Perhaps not. But without him to “cover” for her behavioral idiosyncrasies, she would become more and more exposed.
In any event, Minnie never really expected to have to face life without Sidney. Oh, she knew that they were getting into the dangerous years, and they had even talked about it. But that was an abstraction, not something that could really happen. Until that morning at Sears, when it did.
And what a way to have to face it. Alone among strangers, in a department store, sudden death. A catastrophe. She screamed and cried and couldn’t be consoled. She was seventy-seven.
Why, you ask, were they in a Sears store that morning? You guessed it. They were returning a small rug they had purchased the day before for the floor of their bathroom. It didn’t look as nice as they had anticipated.
Twelve years after the event, at eighty-nine, Minnie would smile when asked whether Sid died before or after they returned the rug, and whether they were able to get their refund. She would chuckle at the thought, but could not recall the answer.
A year later, at ninety, she would struggle to remember who Sidney was—and she would ask the visitor to tell her how her husband died.
SHOPPING TO DIE
There is a product that is very popular among shoppers in South Florida. It is free from the pattern of “buy today and return tomorrow” that was described in the previous chapter. This product is known euphemistically as “Pre-Need.”
It is sold by funeral directors, of which there are very many. Retirement communities breed undertakers and cemeteries in the same way that young family suburbs grow childcare centers and elementary schools.
Morticians have discovered an undeniable truth about merchandising their wares. It is very difficult to return a cemetery plot or coffin, especially after it has been used. This gives the death business an advantage that has to be the envy of merchants selling more mundane wares.
So what, exactly, is Pre-Need? The idea, which is attractive to many retirees, is that they can make decisions concerning their deaths while still alive and vigorous.
Purchasers of Pre-Need packages hope that all will go smoothly when they die, and that they will be sparing their loved ones the turmoil and trauma of having to make all sorts of tough choices under time and emotional pressures.
By arranging all of these things, and paying for them in advance, the theory goes, the temptation to buy the most expensive casket and services (because nothing is too good for “Dad”) can be avoided.
The cynical view is that Pre-Need is a clever scheme that greedy funeral parlor owners have invented to lock in their customers, and to obtain up-front capital on which to earn interest. They sell the “product,” usually on an installment contract basis, with high, if not usurious, interest rates.
The buyer thus loses the investment interest that would have been earned by the dollars spent on the Pre-Need contract. It is the mortician that now earns the investment interest—and, to make the deal even sweeter, the buyer gets to pay credit interest to the mortician for the privilege of deferring final payment.
Not bad (for the funeral parlor, that is)!
In addition, the mortician is assured that the mortuary’s investment for cemetery land is quickly returned to the business, along with a nice margin of profit, long before it’s actually needed for the purpose for which its sold. No wonder so many entrepreneurs are dying to get into this business.
The truth is that Pre-Need can be a win-win in many situations. If the funeral parlor and cemetery deliver what is promised in the contract; if they don’t use the moments after death to impose the old “bait and switch” technique on guilt ridden survivors in an effort to sell higher priced product than chosen by the deceased; and if the terms of a fair and honorable agreement reached with the deceased long before the moment of need are observed, then the Pre-Need agreement may actually provide a bona fide value to the purchaser and to his or her loved ones; and a reasonable and fair business profit to the seller as well.
It is the ultimate layaway plan!
What does all this have to do with Minnie and Sidney Sweet? I’ll tell you, although I’m sure that you have made the connection. Yep! The Sweets had purchased Pre-Need contracts from the Menorah Maven Funeral Home and Twilight Gardens (MMFHTG).
They were very proud of their new real estate, and felt the Pre-Need process to be an unselfish gift to their surviving family members. In fact, they seemed to enjoy taking me along on visits to the cemetery plots whenever the opportunity allowed.
Somehow, I did not find this activity to be as fun-filled as a trip to the beach but, since Dad was so excited about it, I shrugged and played along. Sidney loved to point out the aesthetics of the place.
There were no large, vertical stone markers. All graves had tasteful flat marble plaques engraved with the names of the deceased, dates of birth and death, and a few loving words. Nothing else. Rich or poor, man or woman, none had visible symbols to display worldly success or failure.
The only other option was a mausoleum-like structure that, for a price premium, would store one’s remains above ground in a kind of huge, bureau-like, concrete facility.
Minnie liked that idea, but Sidney did not. He said it would be like lying between the sock drawer and the underwear. Sidney prevailed.
And so, shortly after the incident at Sears, the Sweet clan and its remaining friends gathered at MMFHTG to pay their last respects to Sidney. Minnie was still in shock and denial.
Part of her was her old well-organized self. She threw herself into coordinating the funeral arrangements with the same efficiency and energy she used to organize the three new Hadassah chapters that she subsequently served as President. This part of her persona locked her fear and anxiety up in a safe and walled compartment somewhere inside her heart and soul. She functioned, but as in a dream.
Another part of her knew, though, that this was different, that the funeral was about Sidney, and that this event was the prelude to a new life of loneliness and confusion that awaited her.
The changes that Minnie was experiencing must have frightened and worried her. For the past few years, her highs had become much too high, her lows were severe and self-destructive, and she surely felt a loss of control.
She began to malign life-long friends and family members for hurts both real and imagined. Even siblings were not excluded from her wrath. Neither was her only son. Minor affronts became major issues.
“Ma,” I asked following an incident in which she was especially rude to her sister, “Why did you treat Charlotte so badly? She’s been so supportive of us during this mourning period, so sensitive and kind.”
“What do you mean ‘us’?” Minnie answered with fire in her eyes.
“I mean you and me, Mom. I’m talking about our loss.”
“In the first place, I can treat anyone any way I like. I’VE lost my husband and I’m entitled to grieve.”
“Yes, but grieving doesn’t give us license to be unpleasant to people, especially those who love us and wish us well.”
“Again with the ‘us.’ I’m the one who lost my husband, so everyone can just get off my back.”
“I understand that you lost your husband, Ma, but I had a loss too. I lost my Dad.”
She looked stunned at this realization. “Yes,” she allowed. “I guess you did. But it’s not the same thing. I loved Sidney. What will I do without him?”
“I loved him too, Ma. I miss him terribly already…”
“Okay, okay, but you’ll get over it. I won’t.”
Minnie expressed her bitterness and resentment freely and loudly to anyone who would listen, and to many who tried not to. Her world was shrinking, and she was becoming more and more isolated. Those she offended saw only a difficult personality getting worse.
No one suspected the demon growing inside of her, the illness that had begun to twist her memories, her judgment, and her emotions.
Only Sidney, who was also bewildered by the behavior of his Minnie, had been able to contain her, to do damage control and to keep the peace. He‘d been shielding her. Now he was gone.
At the funeral home, Sidney lay in a partly open casket with a split lid. For a brief period prior to the service, in a departure from an ethnic tradition of closed casket funerals, his head and shoulders were visible. To my surprise, Minnie specifically requested this arrangement.
This is where I came in. Entering the visitation room prior to the service, I had a strong approach-avoidance reaction. I wanted to remember Dad as he was when he was alive and smacking golf balls into the distance at the local driving range. I did not really want to see his corpse. Yet, I couldn’t turn away.
The last time I saw him alive was six months earlier at my home in the north. It was a remarkable visit, during which we talked about life and death, and about things in his past that he never opened up about before.
He cried and hugged, both of which were quite untypical behavior for him, and we shared a moment of closeness and a bond that surpassed anything previously felt between us.
At last, I thought, he is softening about his childhood. I had high hopes of finally learning the mysteries of his past that were heretofore forbidden to me. Now, that opportunity was forever gone, and his secrets were gone with him.
I approached his casket cautiously. His olive complexion, darkened further by years in the Florida sun, seemed somehow unnatural when contrasted against the clean white fabric of the casket interior. There was tightness in my abdomen as I studied him.
I held my breath and took a long, slow, painful, final look at my favorite father, my hero and my role model; and, so help me, he winked at me.
No one saw it but me. I know you think I imagined it, but I don’t care. Maybe I just knew that that’s what he would have done if he were capable of it. It doesn’t matter. As far as I was concerned, he did it. He winked at me.
As I retreated from his casket-side, my mother, Minnie, and a “Suit” accosted me at the exit from the visitation room. I don’t know how else to describe the short, very thin and pale man standing beside her. All I saw was a dark and shiny polyester suit.
The man introduced himself as the manager of the funeral home and insisted that Mom and I join him immediately in his office. I didn’t know what he wanted and, frankly, at the moment I did not particularly care.
“Not right now,” I resisted. “We’re in mourning. What’s this about?”
“It really can’t wait,” he persisted, “and I’m afraid that we can’t continue the funeral until we sit down and talk.”
Something about his words and tone told me that this was about money. He could not have chosen a more sensitive time to engage in such an insensitive demand. It was hard to contain the anger I was feeling, but I had no choice.
Mom and I followed him meekly into his office, while the funeral was placed on hold. I hoped the interruption would be short and that nobody “outside” would notice. When we were seated at a small table in his office, the Suit began to speak.
He wasn’t rude. In fact he was unctuous. He got right to the point. “Your mother owes us $2200.” He said. “I’m sorry, but we must have a check right now in order for our services to continue.”
“They have a Pre-Need agreement with you,” I said. “My understanding is that everything has been paid for.”
Mom looked sheepish. The Suit cleared his throat. “Yes, they do have Pre-Need with us. That’s why the balance is so low.”
“Why is there a balance at all?” I asked, still confused by the shakedown I was getting.
“Let me show you,” he replied, putting a stack of pink and yellow papers, invoices, and contracts on the table in front of us.
It seems that Dad had been paying out the agreement on a time contract and, when he died, there was still a balance of about $500. To that amount another $1000 had to be added for the very best coffin the funeral parlor had in its inventory. Mom had upgraded to that model today.
Then there was the extra limousine service, and on and on and on, numerous services over and above the Pre-Need arrangements, and all ordered by Minnie during the past 24 hours. The new total came to $2200. Was I prepared to write a check?
“Can’t this wait until after the funeral?” I asked, hoping to have a chance to talk to my mother privately, and hoping she would write the check. She could afford it. But she was sitting silently, staring at the floor.
“I think this is in very bad taste,” I said. “If we owe you some money, you’ll be paid. What’s the hurry now? Let’s get the funeral going.”
“You don’t understand,” said the Suit. “This is a business, and we often get stuck with bad debts. Our policy now is to collect everything that’s owed in advance. I’m sorry, but no money, no more funeral today.
“You can’t just stop it now,” I snapped. “My father is out there lying in one of your Cadillac caskets.”
“We can and we will,” came the reply. “Your father can be refrigerated until the bill is paid and then we can proceed.”
I couldn’t believe my ears. Refrigerated! “You would really send all those mourners home at this point,” I said, more as a statement then a question.
“I’m sorry. Without a check for $2200 I’d have no other choice.”
Minnie looked up at me. There was a bewildered look in her eyes. She said nothing, but she did not have to. It was clear what I had to do.
“Whom do I make it out to?” I asked, taking out my pen.
DRIVING AWAY THE BLUES
Sidney never let Minnie drive. Oh, when they were younger, Minnie got her license and, occasionally, did get behind the wheel. For decades, however, Sidney just obstructed any effort to get her to drive. Every once in awhile, she would launch a mild protest.
“He won’t let me drive,” she would say meekly.
“What do you mean ‘let you’?” I’d ask. “You’re a grown woman. If you want to drive, take the keys and do it. I bet Dad won’t stop you if you really insist.”
“No,” she’d say quietly, “He won’t let me.”
And that was that. Actually, she had little incentive to force the issue. For one thing, with nary a protest or complaint, Sidney drove Minnie everywhere she had to go. For another, he usually wanted to accompany her to 95% of the places where she wanted to go. So what was the big deal?
This drove Nadine and me nuts. We understood that Mom was of an immigrant generation that encouraged wives to become totally dependent on their husbands. Women had been liberated, however. Hadn’t she noticed? Why didn’t she demand equality with respect to driving, we asked each other? Didn’t she care about her rights, we wondered?
Apparently not. It seemed that the issue was more of a problem in our minds than in Minnie or Sid’s, and so we backed off. That is, while Sidney was alive and in the driver’s seat, so to speak.
When Sid died, Nadine and I smelled an opportunity. Mom had lost her full time chauffer. She was going to become locationally challenged unless she moved quickly to do one of two things, or perhaps both.
One possibility was for her to utilize a local van service for seniors, a commercial taxi company, or one of the private chauffer services offered by some of the retired men in the community. The second idea involved Minnie’s return to the world of car and driver. Nadine and I were aggressively pushing the latter. We would live to regret this.
It did not take much to get Minnie to acquiesce to our encouragement. She began driving Sid’s Bonneville within weeks of his death. I call it Sid’s Bonneville because that’s what it was. He loved that car. When he wanted to buy it, he lobbied Minnie ceaselessly for months in order to gain her agreement about the expenditure.
Money had become relatively tight. “I’d like to get one more car before I die,” he’d say.
“You’re not dying so fast,” she’d reply. “There’s nothing wrong with the Buick.”
“This will be my last new car,” he’d come back, playing on her sympathy.
“Stop it,” she’d snort. “You’re breaking my heart, old man. You have at least three new cars left in you.”
Well, he wore her down. Little did either really expect his words to become so prophetic. Within two years, he was dead, and Minnie was trying to pilot a car around Retiree Realm that was at least two sizes too big.
She wasn’t the worst or most dangerous driver out there on the road. Countless other cognitively or physically impaired people terrorized their neighborhoods with their OPC’s. Nevertheless, she was certainly holding her own.
By the way, an OPC, I’m told by my children’s’ generation, is an “Old Person’s Car,” usually a dated, extra large, GM, Ford, or Chrysler product.
Here’s what happened. A few days after the funeral, Minnie needed groceries and faced her moment of truth. Call a cab or drive? It was a “no-brainer.” Off she went and within a month we knew why Sidney had kept her solidly planted in the passenger seat.
First, it was the fender bender phantom.
“Ma,” I asked when I’d came for a visit, “what happened to the tail light?”
“What do you mean?”
“Come look.”
“Oh yeah, it’s smashed. I forgot.”
“How did it happen?”
“It was parked in the Publix parking lot. I noticed the damage when I got back with my groceries.”
“What about the dent in the right passenger side fender?”
“These parking lots are trouble. That was when I parked near the Eckerd’s drug store.”
“Did you see who did it?”
Silence. Then a guilty look. Then, “No. The drivers down here are awful.”
There was no point in quizzing her about the loose and hanging chrome strip, the deep scratch in the driver side door, or a half dozen other minor injuries. It was always the fender bender phantom. She saw no evil, heard no evil, and smelled no evil.
Then there was the tale of the “nice policeman.”
Ring, ring. “Hello,” I said.
“It’s me honey. I want to tell you about the sweet officer that stopped me yesterday.” Minnie laughed as she announced this as though it was the funniest thing since Milton Berle. Did I really want to know what came next? No, not really but…
“What about the sweet officer?” I asked fearing the worst.
“Well, ha, ha ha, he was so nice. He stopped me and told me I was going the wrong way on a one way street.”
“What!” I yelled, blood pressure rising, “That’s very dangerous, Ma. Did he give you a ticket?”
“No, of course not, silly. He knows me. This isn’t the first time it’s happened.”
Again, “What!” I tried, and failed, to sound calm. “You’re telling me it’s happened before?”
“Only a couple of times. Why are you so excited?”
“Ma, it’s very dangerous. You could have had a head-on. What did the policeman do?”
“I told you. He’s my friend. He did what he always does.”
“Which is?”
“He had me turn the car around and he told me to be more careful. He smiled, too. He’s such a nice young policeman.”
“He turned you around, smiled and sent you on your way? No warnings? No punishments?”
“What are you going on about? Nobody’s hurt. I thought it was funny. I just wanted you to know.”
“Goodbye, Ma.”
“’Bye.”
So much for women’s lib. Seems we had created a monster and had to face the tricky task of somehow reversing course. How? That’s another story.
FINAL COMMENT
You’ve reached the end of these excerpts. If you found the beginning journey worthwhile, please consider buying a copy of the complete book. Also, tell your friends, relatives and anyone else that you think might benefit.
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Thank you for reading Dementia Diary.
Copyright 2008 Robert Tell. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, recording or otherwise, without the prior written permission of the author.
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