Thursday, November 25, 2010

How to Read Dementia Books for Less

This post may seem to have nothing to do with caregiving, yet it has everything to do with it if it can get more of you to read some free samples of "Dementia Diary, A Caregiver's Journal," at Smashwords (

What, you may ask is "Smashwords?" This website with the funny name has grown into one of the world's premier e-book publishing and distribution sources. It is a boon for readers and writers alike. Talented new writers, freed from the artificial constraints of the traditional publishing industry with its partiality toward celebrity authors, can now share their art with readers eager to sample budding talent.

E-books are selling like hotcakes. The latest industry figures show that recent traditional bookstore sales were down about 8%, while e-book sales were up over 150%. It's a veritable publishing revolution.

And I'm happy to be part of the revolution with my best selling memoir, "Dementia Diary, A Caregiver's Journal," which Smashwords readers are discovering and downloading in ever increasing numbers. Thank you.

Some books are available totally free on the Smashwords site—and up to 50% of many books can be sampled free by readers before making their purchase decisions. Most books are priced far below the bookstore price for print editions. What a great way for readers to discover new favorite authors!

And these e-books can be read in every e-book format and on every commercially available e-book reader. In fact, it is not even necessary to have an e-reader since Smashwords books can be downloaded and read right on your computer.

True, one of the downsides of the e-book "revolution" is that there may be some unedited and poor quality writing among the selections. But the availability of free sampling eliminates risk for readers. If you don't like the first free 20% to 50%, you don't have to buy the book. There's no longer any reason to shell out big bucks for a printed book only to put it aside at home because it disappoints, with no refund available.

There are already tens of thousands of books available at Smashwords in every genre and category. So whatever your special interests, they are well covered.

Shameless commerce department: I can't ignore this opportunity to plug my own work at

"Dementia Diary, A Caregiver's Journal"—A portable support group for caregivers
"Thirsty Planet"—An adventure novel of global warming
"Bard Memorial Hospital"—Vignettes and poetry about hospital drama
"A Question of Judgment"—A short story about a misdiagnosed infant

"A Question of Judgment" is totally free. Why? Because it will introduce readers to a risk free way to sample my writing and, if they like it, they may choose to read my other books.

So Smashwords is good news for readers and for writers.To find out more about the Smashwords site, take a look at the following Smashwords slideshow:

Thursday, November 4, 2010

Encore: The Day She Tried To Eat The Mirror

Let me describe a typical nursing home visit toward the end of my mother's life. It was the end of lunchtime. Mom was asleep in her wheelchair with a half finished plate of pureed stuff—green, brown, stuff—and clutched in her hand upside down was a small carton of the fortified chocolate shakes she likes so much. The contents of the shake was all over her bib and clothing and there were no attendants handy to clean her up. She smiled weakly when she saw me and, I think, recognized me, but her energy level was clearly low.

Anyway, I wheeled her over to her room where my wife was busy exchanging her summer clothes for her winter clothes and parked her against a wall so we could chat (or try to). She was sliding down in her wheelchair and I noticed that no one had bothered to attach the wheelchair footrests (again). I found the footrests in their usual spot under her bed (?), attached them and tried to lift all 140 pounds of her into a more comfortable position. I couldn’t do it myself, so my wife came over to assist and, together, we managed to improve Mom’s posture slightly.

All this time no staff person offered to help, so my wife cleaned Mom’s lunch off her clothing as best she could. Mom was sporting a stylish new haircut, so my wife took out her compact mirror and gave it to Mom so she could see how she looked. She seemed really interested and stared at the mirror for a long time. Great, we thought. She still cared about her appearance. But our pleasure soon evaporated as Mom lifted the compact to her mouth, licked it with her tongue, and tried to eat it. She must have thought it was a cookie.

Another possibility is that vision, hearing, smell and taste are so far gone with her that touch—tactile experience—is all she has left to gather information. Perhaps she wasn’t so much trying to eat the mirror as to identify it—but as I said in another article: who knows?

Suddenly she started holding her throat as though she was in great discomfort. It could have been a swallowing issue, reflux, heartburn, breathing problem...or none of the above. She could not articulate the answer but nodded affirmatively to a suggestion of water. She drank eagerly, and swallowed easily, until she aspirated the water and began to choke. Still no staff member was near enough to observe and to help.

Finally, we tackled an aide who was passing by and learned that Mom’s assigned aide went home early because she had spilled something on her clothes. Staffing levels being what they are, that meant that Mom would be unattended until the next shift. Because we were there and making demands, we got a promise that this aide would add Mom to her already huge caseload and keep an eye on her until shift change.

So the question is: if this was the situation when family members were visiting, what was it like when we weren’t there? If I thought she would get better care in another home, I would have moved her in a heartbeat—but there were no better alternatives available in our area. So what would have been gained by putting her through the trauma of moving? Not much in my judgment.

I know of no happy nursing home experiences. If you have one to report, please share your story on this blog. It would be a real morale boost for the rest of us.

(This is an encore article originally published June 2008--Sad to say, in the 2+ years since it was first published, we have not received a single report of a happy nursing home experience from our reders. Is this testimony to the really bad experience all of you are having with nursing home care for your loved ones? I truly hope not. )

Bob Tell
Dementia Diary, A Caregiver's Journal
Print edition:

Sunday, October 10, 2010

Encore: Can Dementia Ever Be Funny?

The inspiration for this post and for my book, "Dementia Diary, A Caregiver's Journal," was a talk that I gave to a conference for caregivers of loved ones with Alzheimer's Disease and other dementias. The speakers included a psychiatrist, a geriatrician, and a panel of four caregivers--one of whom was me.

I learned a lot that evening. The presentations and audience questions taught me that the kinds of bittersweet anecdotes I described about my mother's dementia are the common lot of all who deal with the reality of dementia in a loved one.

And surprising (to me at least) the audience found many of the anecdotes that I reported to be hilariously funny. Many had experienced the same kinds of behavior with their own loved ones with dementia. It was clearly a relief for them to hear these stories spoken aloud.

It helped them to realize they were not alone, and so they laughed--laughter that was unexpected but very welcome--laughter that helped to reduce the tension of these caregiver's daily caregiving stress...and they suggested it would be helpful for others to be able to read about my caregiving experiences with my mother.

It is my wish that caregivers 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.

(This is an encore article originally published June 2008)

Bob Tell
Dementia Diary, A Caregiver's Journal

Monday, July 5, 2010

How to get a discount for Dementia Diary, A Caregiver's Journal

Shameless commerce announcement!

If you are an e-book reader, July is the month to get a deal on my books. During the Smashword's July promotion, get a 26% discount on Dementia Diary (and all my books) by clicking on the following links:

Dementia Diary, A Caregivers Journal

Thirsty Planet (A green adventure novel)

Bard Memorial Hospital, Poems and vignettes

And don't forget, you can read free samples at these sites before you buy so you will know what you are buying.

Happy Summer Reading!


Saturday, June 26, 2010

Possible Advance in Alzheimer’s research

Here's a development that will be of interest to all my readers. On June 17, 2009, I wrote about the Fisher Center for Alzheimer’s Research Foundation. This organization just announced a significant new advance in Alzheimer’s research. In 2008, researchers at the Fisher Center laboratory developed a technology by which they could determine the protein composition of each individual nerve cell type in the brain, called TRAP. They are now using this technology to analyze the differences in protein composition between those nerve cells which die in Alzheimer's disease (vulnerable nerve cells) and those nerve cells which do not die (resistant nerve cells). This knowledge will enable their scientists to take genes from vulnerable cells, inject these genes into resistant cells causing their death, and thereby prove that these genes cause cells to be vulnerable and die in Alzheimer's disease. They are preparing to search for inhibitors of the disease-causing genes that they are currently in the process of identifying. These inhibitors are expected to be highly effective in the treatment of Alzheimer's disease. You can learn more about the Fisher Center and its Alzheimer's research at

Bob Tell
Dementia Diary, A Caregiver's Journal

Saturday, June 19, 2010

Encore: Signs of a Decline in Memory Function

Here's a helpful guide I posted in July, 2008 that is worth repeating:

It's not always easy to tell when a loved one is experiencing the onset of dementia. Here are some significant signs that are provided below as a courtesy from their author, Jean Bandos, MSN, RN, GCNS-BC Research Director at "My Health Care Manager," a national company that helps seniors and their families manage the complexities of older adult life.

*Forgetfulness - not just forgetting names or appointments, but frequently forgetting doctor’s appointments, important anniversaries, birthdays and other special dates that would have never been forgotten in the past.

*Forgetting to the point that it causes confusion and interruption with daily activities.

*Forgetting to turn off the stove – we have all left a burner on accidentally, but if this is a frequent event or if the older adult does not remember cooking at all, then it is no longer a “normal” part of aging.

*Everyone experiences difficulties finding the right words, especially in stressful situations. It’s a bigger issue when an older adult cannot remember simple words and substitutes his or her own words making it difficult to follow what they are saying.

*Misplacing items is common for everybody, but it becomes a “memory problem” if the keys are found in the freezer or the ice tray is in the dryer.

*Finances – there is a problem if a senior has always kept an accurate checkbook in the past and now it never balances.

*Impaired judgment, such as dressing appropriately. This does not mean the senior is mixing plaids and strips, or purples and reds, but is caught wearing a bathrobe to the shopping mall or putting on several shirts instead of one.

Bob Tell
Dementia Diary, A Caregiver's Journal

Monday, March 15, 2010

Can Painting Help Dementia Sufferers?

In a comment on my last blog, Dan said the following:

"I didn't know much about dementia till reading an article on the HuffPost the other day which talked about how creative arts are helping people with diseases like Alzheimer's. So now I am reading a bit more which is how stumbled upon your blog. May they find a cure and treatment soon. oh, here is the link to other article I read:"

Well, I read this article too. It's by Rosalia Gitau, entitled: Art Therapy for Alzheimer's: "I Remember Better When I Paint." Posted March 11th in the Huffington Post, I recommend it as important reading to one and all. Again, there are no panaceas or miracle cures, but every new piece of information helps. Here's an idea that promises to enhance the quality of life for dementia sufferers (and their caregivers).

"I Remember Better When I Paint" is a brief but powerful documentary by Eric Ellena and Berna Huebner, that can be viewed on Gitau's post. The film demonstrates that practicing the creative arts can be an effective technique for cognitive improvement among dementia sufferers.

It's certainly worth further exploration.

Bob Tell
Dementia Diary, A Caregiver's Journal

Saturday, March 13, 2010

Encore: How does Alzheimer's Compare to Other Dementias?

Here’s a popular article I wrote that is appearing on eldercare blogs, zines and sites throughout the web. It first appeared on my former website on September 17, 2006 and on this blog in June, 2008. I hope you agree that it is as relevant today as it was then. Feel free to continue a conversation on this theme, caregiver burnout, caregiver support, or on any other related topic:

In 1906, Dr. Alois Alzheimer presented a key paper to the meeting of the South West German Society of Alienists. In it he described the disease syndrome that now bears his name. Today, Alzheimer’s Disease has become the common term most people use whenever they talk about any kind of dementia. In fact, the very term “Alzheimer’s” has become a catchall for any syndrome in which progressive cognitive dysfunction is the major manifestation.

However, there are dozens of other dementias including, to name just a few: Multi-Infarct Dementia, Frontotemporal Dementia (FTD), Pick's Disease, Progressive Aphasia, Corticobasal Degeneration, Lewy Body Dementia, Senile Dementia, Binswanger’s Disease, Vascular Dementia, Parkinsonian, etc.

From a caregiver’s point of view, it almost doesn’t matter which dementia is at hand. The perpetual grief and mourning felt by the caregiver will be the same regardless of the specific process affecting his or her loved one.

My special interest is in Multi-Infarct Dementia because that is the one that affected my mother and the one I write about in: “DEMENTIA DIARY: A Care Giver’s Journal.” (Another name for this syndrome is Vascular Dementia.)

I should say that I am not a physician or a professional expert in this disease. I am, by profession, a hospital administrator, so I do feel equipped to at least understand the language of the clinicians. What I know comes from 16 years of watching my mother sink into her opaque world, plus 16 years of discussions with physicians providing her medical care.

Here is the way one physician described Multi-Infarct Dementia to me. It is caused by multiple strokes, some call them mini-strokes. The “victim” of this condition 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 such as: confusion, impaired judgment, aphasia, irritability, depression, mood swings, inertia, significant memory loss, and a host of possible others.

Not all symptoms are experienced by every sufferer, but sooner or later most of them may appear. And the symptoms of Multi-Infarct Dementia are not really all that different from Alzheimer’s or other dementias. I’ve been given to understand that these differences are subtle, hard to tell apart for a layman.

Health care professionals have explained that if one were to line up sufferers of each of the various dementias next to one another you could probably differentiate them—but that’s what it would take.

If you are dealing with a dementia in a loved one, good luck and best wishes in your search for help and understanding.

Bob Tell
Dementia Diary, A Caregiver's Journal

Saturday, February 20, 2010

Read An E-Book Week March 7-13 2010

Why am I promoting Read An E-Book Week on a blog devoted to caregiving? Read an E-Book Week educates and informs the public about the pleasures and advantages of reading electronically. I've been receiving a lot of questions from my readers lately about how the trend toward ebook publishing is affecting my own published work. I thought you might be interested in my take on this trend.

Like most of us, I love the feel and smell of printed books. Until recently, I thought ebooks would never be able to replace the real thing. But a revolution is taking place in the book publishing industry. Bookstore sales are plummeting and ebook sales are surging. Many new and improved devices are entering the market to enable ebook reading, such as: Amazon Kindle; Apple iPad, iPhone & iPod Touch; Sony Reader; Palm; and H-P Slate, to name just a few.

As an author, I've been trying to understand why this is happening now. Whatever the reasons, one thing is clear. I need to be part of this revolution. My two books, "Thirsty Planet" and "Dementia Diary," were just published as ebooks by Smashwords, one of the top ebook publishers for work by independent authors.

If, like me, you're curious about all the ebook hoopla, I invite you to check out the Smashwords site. Many ebooks, including mine, can be sampled there for free in multiple ebook formats, readable on virtually any ebook reading device.

Here's the link to my Smashwords author profile:
Here's the link to my book page, where Thirsty Planet can be sampled or purchased:
Here's the link to my book page, where Dementia Diary can be sampled or purchased:


I would also like to recommend some of the other excellent authors featured at—feel free to check them out and to tell other book lovers about Smashwords.

If you've already read my books in the print editions, let me again say thank you. I really appreciate your support and your wonderful comments about my work. The print editions of my books will, of course, continue to be available at my personal website for those who prefer that format.

Bob Tell

Friday, February 12, 2010


Have you ever asked yourself this question when your loved one with dementia is being obnoxious? I did. Frequently. Then, of course, I felt guilty for having this reaction. Here’s what the social workers told me:

"First of all, it’s a normal question about normal behavior for someone with cognitive decline. Many dementia sufferers have difficult behavior patterns, including such things as overeating without remembering they just ate, asking the same questions repeatedly, physically aggressive actions, removal of clothing in public, loudly insulting people in public places, and... (you can fill in the blanks I am sure with many other behaviors.)

Second of all, it’s not “about me.” It’s about her...or him...or them. It’s a disease process—an illness. Your loved one cannot control the symptoms of this sickness any more than if it were pneumonia, or heart disease, or cancer, or any other dread condition. Things are happening in his or her brain that affect behavior."

Chances are your loved ones would have been embarrassed to death if their earlier, healthy, selves could see them now. It’s up to us as caregivers to recognize that they are not “doing it to us,” and to forgive them—daily if necessary. They just can’t help themselves.

I know it’s hard to do this when Mom tells you your brother (or sister) is more caring, more solicitous, more anything than you when you know that the sibling in question has run the other way as fast as his (her) legs can move (without ever looking back). She doesn’t mean it! And don’t blame your sibling for running. You would too if you could, wouldn’t you? (Not really, but you do think about it, don’t you?)

So recognize the wisdom of the “social worker” advice I’m passing along. If you can get yourself to ignore the behaviors as symptoms of disease and not take them personally (even when they seem to be personal), you’ll be a much happier person and a better caregiver for your loved one with dementia.

(This is an encore article originally published June 2008)

Bob Tell
Dementia Diary, A Caregiver's Journal

Tuesday, January 12, 2010

Encore: Do You Remember.............???

This is an encore article originally published in June, 2008.

People with dementia, especially in the early stages, are frightened by what's happening to them. Caregivers need to be sensitive to what they say and how they say it.

For example, it's very tempting to introduce comments about past events with the phrase:"Do you remember..." This should be avoided.

It's very hard to do (I should know as I've been there and done that in dealing with my mother's dementia). This phrase reminds the dementia sufferer that he/she has memory issues. The response will either be agitation or else a "Yes, I remember," which may or may not be true.

Many dementia victims are good at covering up their deficits when confronted with such a question. It's important for their dignity and tranquility for caregivers to be alert to small things like this.

Bob Tell
Dementia Diary, A Caregiver's Journal