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
Author
Dementia Diary, A Caregiver's Journal
http://dementia-diary.com
Saturday, March 13, 2010
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:
http://www.smashwords.com/profile/view/bobtell
Here's the link to my book page, where Thirsty Planet can be sampled or purchased: http://www.smashwords.com/books/view/9509
Here's the link to my book page, where Dementia Diary can be sampled or purchased: http://www.smashwords.com/books/view/9565
AND I'M OFFERING A 50% DISCOUNT ON SMASHWORDS PURCHASES MADE DURING "READ AN E-BOOK WEEK." Details on my Smashwords sites during that week.
I would also like to recommend some of the other excellent authors featured at http://www.smashwords.com/—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
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:
http://www.smashwords.com/profile/view/bobtell
Here's the link to my book page, where Thirsty Planet can be sampled or purchased: http://www.smashwords.com/books/view/9509
Here's the link to my book page, where Dementia Diary can be sampled or purchased: http://www.smashwords.com/books/view/9565
AND I'M OFFERING A 50% DISCOUNT ON SMASHWORDS PURCHASES MADE DURING "READ AN E-BOOK WEEK." Details on my Smashwords sites during that week.
I would also like to recommend some of the other excellent authors featured at http://www.smashwords.com/—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
ENCORE: WHY IS MOM DOING THIS TO ME?
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
Author
Dementia Diary, A Caregiver's Journal
http://dementia-diary.com
"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
Author
Dementia Diary, A Caregiver's Journal
http://dementia-diary.com
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
Author
Dementia Diary, A Caregiver's Journal
http://dementia-diary.com
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
Author
Dementia Diary, A Caregiver's Journal
http://dementia-diary.com
Tuesday, December 15, 2009
Encore: Can Dementia ever be funny?
The inspiration for this post 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.
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.
Bob Tell
Author
Dementia Diary, A Caregiver's Journal
http://dementia-diary.com
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.
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.
Bob Tell
Author
Dementia Diary, A Caregiver's Journal
http://dementia-diary.com
Friday, November 6, 2009
Encore: Is "Pre-Need" Really Needed?
Some readers have asked me to republish (and update) some of my more popular older posts. This article, first published in July, 2008, deals with planning for death (our own or a loved one's). Not something we usually like to think about, but a reality of our time on Earth.
There is a product that is growing in popularity among seniors and is being merchandised aggressively by funeral parlors. 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 can 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.
Thankfully, not all plans are like this. Sometimes the funeral home does not own the cemetery. And sometimes the pre-need funds can be placed in escrow with all rights and earned interest remaining with the consumer. This is the kind of arrangement to insist upon if pre-need makes sense to you.
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 their contracts; 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!
Bob Tell
Author
Dementia Diary, A Caregiver's Journal
http://dementia-diary.com
There is a product that is growing in popularity among seniors and is being merchandised aggressively by funeral parlors. 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 can 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.
Thankfully, not all plans are like this. Sometimes the funeral home does not own the cemetery. And sometimes the pre-need funds can be placed in escrow with all rights and earned interest remaining with the consumer. This is the kind of arrangement to insist upon if pre-need makes sense to you.
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 their contracts; 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!
Bob Tell
Author
Dementia Diary, A Caregiver's Journal
http://dementia-diary.com
Tuesday, October 6, 2009
Encore: What? Take Away My Car.....!!!!
Some readers have asked me to republish some of my more popular older posts. This article, first published in June, 2008, deals with one of the stickiest problems faced by caregivers of loved ones with dementia.
In the September 2003 issue of the AARP Bulletin, John Eberhard, former senior research psychologist at the National Highway Safety Administration, wrote, “Telling seniors they can no longer drive is as hard as telling them they have terminal cancer.”
What caregiver has not faced this issue? How to tell Mom or Dad that it isn’t safe for them to drive and to hand over the car keys? For me, this was one of the hardest things I had to face in the 16 years of being my mother’s caregiver. I write about it in my book. See the chapter entitled: “Should a Caregiver be a Cargiver?”
As a society, we need to become much more creative about meeting the need for independence and transportation mobility among older adults while at the same time protecting the public’s need for protection from sensory deprived drivers. Fortunately, there are several new models of transportation systems that bring exciting possibilities to this sticky issue. To my mind, the one that deserves the most attention is the Independent Transportation Network® and ITNAmerica™.
Here is a quote from ITN’s website:
“ITN provides rides with door-to-door, arm-through-arm service to thousands of seniors nationwide. It's a truly innovative solution with unique programs that allow older people to trade their own cars to pay for rides, and enable volunteer drivers to store transportation credits for their own future transportation needs. ITN's Road Scholarship Program converts volunteer credits into a fund for low-income riders, and the gift certificate program helps adult children support their parents' transportation needs from across the street or across the nation.”
I strongly recommend the review of the ITN website by all community leaders interested in addressing this important issue:
http://www.itnamerica.org/
I think you will find it to be innovative and challenging, and worthy of widespread emulation.
Bob Tell
Author "Dementia Diary, A Caregivers Journal"
http://www.dementia-diary.com
In the September 2003 issue of the AARP Bulletin, John Eberhard, former senior research psychologist at the National Highway Safety Administration, wrote, “Telling seniors they can no longer drive is as hard as telling them they have terminal cancer.”
What caregiver has not faced this issue? How to tell Mom or Dad that it isn’t safe for them to drive and to hand over the car keys? For me, this was one of the hardest things I had to face in the 16 years of being my mother’s caregiver. I write about it in my book. See the chapter entitled: “Should a Caregiver be a Cargiver?”
As a society, we need to become much more creative about meeting the need for independence and transportation mobility among older adults while at the same time protecting the public’s need for protection from sensory deprived drivers. Fortunately, there are several new models of transportation systems that bring exciting possibilities to this sticky issue. To my mind, the one that deserves the most attention is the Independent Transportation Network® and ITNAmerica™.
Here is a quote from ITN’s website:
“ITN provides rides with door-to-door, arm-through-arm service to thousands of seniors nationwide. It's a truly innovative solution with unique programs that allow older people to trade their own cars to pay for rides, and enable volunteer drivers to store transportation credits for their own future transportation needs. ITN's Road Scholarship Program converts volunteer credits into a fund for low-income riders, and the gift certificate program helps adult children support their parents' transportation needs from across the street or across the nation.”
I strongly recommend the review of the ITN website by all community leaders interested in addressing this important issue:
http://www.itnamerica.org/
I think you will find it to be innovative and challenging, and worthy of widespread emulation.
Bob Tell
Author "Dementia Diary, A Caregivers Journal"
http://www.dementia-diary.com
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