Saturday, October 11, 2008


Here is the second excerpt from my memoir, "Dementia Diary, A Caregiver's Journal." Hope you enjoy it and return soon for future installments.


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 to 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, and 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, however. 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 this 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 “snowbirding” 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.

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. 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.

End of Chapter

If you'd like to buy a copy of the book, it's easy. Just click the "Buy Now" badge on the right, or the link to my website just above my Wellsphere photo. And feel free to post your comments below.

Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"

Tuesday, October 7, 2008

Preface to Dementia Diary

As promised, here is the first free excerpt from my memoir, "Dementia Diary, A Caregiver's Journal." Hope you enjoy it and return for the next installment.

Next week, watch for the first Chapter: Who Is Minnie Sweet?"


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."

Again, next week, watch for the first Chapter: Who Is Minnie Sweet?"

If you'd like to buy a copy of the book, it's easy. Just click the "Buy Now" badge on the right, or the link to my website just above my Wellsphere badge. And feel free to post your comments below.

Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"

Monday, October 6, 2008

Will You Read Free Chapters Of My Book For Dementia Caregivers?

Starting with this post, I plan to publish my entire book, "Dementia Diary, A Caregiver's Journal" chapter by chapter on this blog. You may ask, "Why are you doing this? Don't you want people to buy it?"

The answer is, "Yes," I do want people to buy it, and many have—but, more importantly, I want people to read it. I wrote it primarily to help caregivers cope with their own situations and I've been gratified by the hundreds of wonderful comments I've received since my memoir was published.

No, there's no catch. If you have the patience you can read the entire book right here in future posts. My mother would be thrilled to know that her illness has brought comfort and peace to others caught in the web of dementia as sufferers or caregivers. And both she and I would hate to think that the price of the book would ever keep anyone from reading it.

So bookmark this blog and check back at least weekly. Of course, If you enjoy these posted chapters and can't wait the months it will take to see the entire book on this blog, then please feel free to go to my website or Amazon's or Lulu or to any of your favorite on-line booksellers to buy your very own copy. Or to buy one as a gift for someone who needs it.

But whether you do this or not, look for the first post, the Preface, in the next day of so.

I hope my memoir will give you the same level of peace and acceptance that many other caregivers have experienced. And, maybe, even enjoy a chuckle or two at the familiar anecdotes described.

May your struggle with dementia care be a gentle one!

Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"