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?"

"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."

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"
http://www.dementia-diary.com

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"
http://www.dementia-diary.com

Have You Seen Wellsphere's New Website?

To the right of this post you will see my photo in a graphic by Wellsphere calling me a Top Health Blogger. But what does this mean and who is Wellsphere? For a detailed answer I recommend that you check out their website at Wellsphere.com.

In the meantime, here is an edited quote from that website describing Wellsphere's mission:

"Wellsphere’s mission is to help millions of people live healthier, happier lives by connecting them with the knowledge, people and tools they need to manage and improve their health.

"Recognizing that each person has their own unique health questions, Wellsphere developed a model...to help people address their individual concerns. Wellsphere...enables users to quickly and efficiently find comprehensive, personal answers and support for their specific health needs...Wellsphere.com is one of the leading consumer health websites in the world.

"One of the keys to Wellsphere’s success is the breadth of knowledge across its network of experts and experienced health writers, and within its caring community. Wellsphere’s network of writers and bloggers includes more than 1,200 of the leading medical minds from Stanford, Harvard, Johns Hopkins, Yale and other top Medical Schools, as well as patients facing difficult diseases who bravely share their stories of survival."

I am honored to have been invited to be part of this network of writers and hope that you will find the content of Wellsphere's site to be helpful in your search for meaningful information about your health issues.

Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com

How Not To Hire A Geriatric Care Manager (Part 3)

I knew I had made a serious mistake in hiring this particular Geriatric Care Manager. Suddenly, it seemed as though I was paying an hourly fee for the time she spent having lunches with Mom—plus she expected me to pay the cost of these lunches which were listed as “Related Expenses” on her bills.

She was also billing for chauffer services, and for waiting around in doctors’ offices (which could sometimes be several hours of waiting time times her hourly rate). I thought I had hired a GCM. Instead, I appeared to have “bought” a new best friend for my Mom (who had managed to alienate all of her “free” friends).

What was going on here, I wondered? I had hoped for an objective ally to help me plan for Mom’s needs but, suddenly, (according to the GCM) Mom had "hostile feelings that needed expressing." So I found myself dealing with two adversarial camps: Mom and the GCM versus me.

It was time to evaluate the situation. The GCM concept still made sense to me, but perhaps I had selected the wrong person. She was adding to my stress, rather than relieving it…not at all what I had in mind by hiring her. But was she helping Mom? So I asked Mom how she'd feel if I fired this GCM and, surprise…surprise, she was actually happy to see the lady go.

Shortly thereafter, I found a real geriatric professional, one of the social workers at a local family service, who made it a priority to evaluate Mom’s needs, who conducted herself professionally, and who reported regularly to me. I'll call her Gloria, although that was not her real name.

She was a breath of fresh air—everything I had hoped for in hiring her predecessor (that I didn’t get). She soon discovered that Mom had known all along that the other lady was charging us a fee. So she knew the lady was not a "real" friend, just a hired gun. Rather than confront me with this news, however, my mother deliberately ran up the clock as her way of killing the arrangement. At least, that’s what she told Gloria.

It didn’t take long for Gloria to figure out that Mom had some real emotional and cognitive problems, that she was probably at the beginning stage of some sort of dementia, and that the symptoms were certain to get worse.

She began to prepare me for a day, in the not too distant future, when my mother would need to move again, this time into a more sheltered environment.

But that’s a story for another time.


Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com

How Not To Hire A Geriatric Care Manager (Part 2)

So I hired a GCM to take care of Mom in Florida as my surrogate.

She charged $25 an hour for her Geriatric Care Management service and, at first, I was happy to pay it. The woman came highly recommended, was a member of the GCM professional association, and she lived near Mom. She sounded personable and intelligent on the phone. What more could I ask?

Surprisingly, Mom continued to sound receptive to such assistance, and so I set up her first appointment. The GCM did an initial assessment interview and provided a written report that recommended engaging her for ongoing guidance and assistance. She felt that Mom needed someone nearby to confide in and to analyze why she alienated others. She also said that Mom had definite symptoms of early dementia.

Here are some of the services I was promised by this GCM:

• Management of personal affairs, including referrals to financial, legal and/or medical professionals, as necessary.
• Care-planning assessments.
• Coordination of in-home services, if and when needed.
• Crisis intervention.
• Counseling and support.
• Weekly communication with me.

Sounded wonderful. The last item, communication, was from my point of view the most important single benefit of the service I thought I was buying. And for the first month or so, the GCM did stay in touch, maybe not weekly, but often enough so that I had a sense of what was happening with Mom.

Gradually, though, the services provided by the GCM began to change. To find out how, stay tuned for the next post.

Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com

How Not To Hire A Geriatric Care Manager (Part 1)

So I was stuck in Michigan while my mother continued her cognitive slide in Florida. What to do?

I had a plan to help me stay better informed about her daily needs, but it would require her willing cooperation. A new profession had recently emerged to help relatives of elderly family members supervise and coordinate care and services for their loved ones. Its practitioners were known as Geriatric Care Managers (GCM) and I wanted to hire one for Mom. But how to find a good one?

A national association of these GCM’s had formed for the purpose of promoting professionalism among its membership. It provided contact information for those of their members that practiced in South Florida. With the membership list in hand I phone interviewed several GCM’s living and practicing near Mom, and selected one. But would my mother buy into this idea? I had my doubts.

There were all sorts of services that these professionals said they could provide, depending upon their individual backgrounds and training. These included, among other things, clinical services, transportation, shopping assistance, emotional support, financial management, liaison with social services, or just plain old companionship.

Perhaps the most attractive feature of this service was the potential of having an objective, third party, on the scene, able to monitor the situation and to report regularly to me about Minnie’s needs.

It was like buying a surrogate caregiving relative, I thought...someone to be there for Mom when I could not. Without question, there would be some tough choices to be made down the road, some of which might be heart wrenching and guilt producing—like the possibility of having to arrange for the dreaded nursing home, for example.

I didn’t want to face such decisions alone, always to wonder whether I had done the right thing. Here was a way, I thought, to have a partner to assist me to evaluate each situation, and to advise me on the best professional options for my mother. It was the perfect setting, I thought, for a Geriatric Care Manager. So I hired one.

Soon I was paying big bucks for this GCM to have lunch several times a week with Mom…and not much else! More next time.

Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com

How To Cope With Long Distance Care Giving

Here's a situation that I bet affects many of my readers and that causes some of you much frustration and angst.

In the beginning of Mom's decline, it was not immediately clear to me that she was losing cognitive function. More and more, after Dad died, she naturally looked to me for help with her decision-making and with her growing problems with daily living.

I had to decide things like: when to intervene forcefully about driving, housing, medical care, etc., and how to make this determination long distance. For me, living half a continent away, this is what it meant: when to hop on a plane, leave my own business and family concerns, and go to her—-and when not to go. It wasn't always easy to determine when my presence was absolutely necessary. As with most of us, there were limited opportunities for me to actually pick up at a moment's notice and go.

So you know what happened, don't you? Often, when I finally arrived to deal with her crisis, the problem remarkably got resolved while I was in transit and my physical presence turned out not to be really necessary. On the other hand, shortly after I returned home, she'd invariably face an issue that really did require me to be there…only, this time, I would not be able to get away again.

I wanted to save my trips for the absolutely essential ones, but how could I know in advance? How indeed? There was nobody but me, her only child and next of kin. Who could advise me? I needed partners to assist me.

In a future post I'll share the good news and the bad that resulted from my search for a local assistant.

Bob Tell
Author, "Dementia-Diary, A Caregiver's Journal"
http://www.dementia-diary.com