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
Dementia Diary, A Caregiver's Journal

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
Dementia Diary, A Caregiver's Journal

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:


I think you will find it to be innovative and challenging, and worthy of widespread emulation.

Bob Tell
Author "Dementia Diary, A Caregivers Journal"

Saturday, October 3, 2009

Encore: Keyword Glossary For Alzheimer's/Dementia Services

Some readers have asked me to republish some of my more popular older posts. This article, first published in July, 2008, is about the best way for caregivers of parents and spouses to use Google and other internet search engines to find quality services for their elderly loved ones with dementia.

No matter which dementia is involved (Alzheimer’s disease, senile dementia, pick’s disease, lewy body dementia, frontal temporal lobe dementia, vascular dementia, Parkinson's disease—to name just a few of the dozens of dementias that we know about), the keywords used in the research will make all the difference.

Of course. a “keyword” is a word or phrase that is entered into the search box of Google, Yahoo, Ask, and other search engine sites to prompt them to report links to relevant websites. The following paragraphs use popular keywords (IN CAPS) that usually generate multiple links to comprehensive sources of major information for Alzheimer’s Disease caregivers and related dementia sufferers.

CARE ASSESSMENT—This phrase will be helpful to caregivers who seek professional guidance about how best to meet their loved ones’ care needs.

ASSISTED LIVING—You are a caregiver to an elderly parent or spouse and you know your loved one can no longer live independently. But how to choose a proper structured and safe assisted living home for him or her? Pundits have said that “if you’ve seen one assisted living home, you’ve seen one assisted living home.” In other words, while there are some common elements among them, they are all different. There’s the medical model, the social work model, the luxury model, the economy model, the nursing model, the NORC (Naturally Occurring Retirement Community), and many variations on these themes. This keyword (i.e. Assisted Living) will get you started on your important search for the right program for your loved one.

CAREGIVER BURNOUT: This phrase describes a common feeling of helplessness and frustration among caregivers dealing with endless demands upon their time, energy, emotions, finances and patience.

CAREGIVER SUPPORT GROUPS: Many caregivers cope with the loneliness and isolation of their situations by joining real or virtual support groups. The internet can help them find an appropriate group.

ELDERCARE: This keyword will help the researcher to identify a variety of resources available to assist with the caregiving of aging parents or spouses with dementia.

SKILLED NURSING—or skilled nursing homes—or skilled nursing care are all keyword phrases that will lead elderly parent caregivers or spouse caregivers to information about how best to access this level of care for the dementia sufferer.

NURSING HOME RATINGS—When that dreaded moment arrives that nursing home placement for a loved one is imminent, this keyword phrase will lead you to sites that provide information to help you choose the best environment for your elderly loved one. Links to several nursing home rating sites are listed on my website: www.dementia-diary.com.

MEDICAID NURSING HOMES—Medicaid is the national program for financing health care to the poor. The cost of elderly care is so high that many patients run through their savings and are nearly destitute by the time nursing home care is needed. Elderly patients needing skilled nursing care who cannot afford a private nursing home may qualify for Medicaid. While not all nursing homes accept patients on Medicaid, many do. Guidance for families in this situation can be found on the internet by using this keyword phrase.

MEDICARE NURSING HOMES—Medicare is part of our Social Security system and provides financing for medical services to most citizens over the age of 65 regardless of their ability to pay. However, not all nursing homes accept payment from Medicare because that government program is quite limited with respect to long term care benefits. These homes fear that when Medicare benefits run out, they’ll have to continue to provide care without receiving compensation for services rendered. Nevertheless, many nursing homes are open to admitting Medicare patients for at least the short term—and some will permit such patients to remain if they become Medicaid eligible. It’s important to obtain this information up front as you go about researching nursing homes for your loved one.

HOSPICE CARE—Most folks are now familiar with this wonderful care concept for dying patients and their families. It was pioneered in England in the 1960’s, promoted by Elizabeth Kubler-Ross’s work on death and dying, and is now widely available throughout the United States. Medicare currently pays for most elderly patients requiring hospice care.

BILL PAYING SERVICES—Sloppy bill paying behavior is one of the first things caregivers notice when they see decline in their elderly parents or significant others. This often leads to a search for a commercial bill paying service. Many banks offer this service too. While not exclusively for dementia patients, these services can make it much easier to assist a loved one with dementia to pay his or her bills and eventually, if necessary, to take it over completely.

Do you know of other important keywords? If so, let me know at bobtell@mac.com

Bob Tell
Author "Dementia Diary, A Caregivers Journal"

Thursday, October 1, 2009

Encore: Could it be the Dementia?

I've been asked to republish some of my more popular older posts by many of my readers. Here is one called "Could it be the Dementia?" first published in July, 2008.

So...could Mom's behavior be caused by her dementia. I couldn’t tell. I was too close to it. I got mad every time she lashed out at me…or else I felt embarrassed whenever her target was someone else (usually in public places)—or when she over-ate without remembering that she had just eaten—or when she asked the same question over and over and over—or she was physically aggressive—or (you can fill in the blanks with other things that make you crazy).

Every time Mom did something socially unacceptable (I won’t catalogue these things—you know what they are), my anger raged. Afterwards, of course, I felt guilty for getting angry. Well, I didn’t have to feel this way…and neither do you.

Here’s what the social worker told me:


“Cool it buddy!” she said. “It’s not about you. It’s about her. It’s a disease process—an illness.” So recognize the wisdom of the social worker’s advice.

Learn to ignore the bizarre behaviors of your loved one and to accept them as “normal” symptoms of dementia disease (and to not take them personally even when they seem to be personal). You’ll be a much happier person and a much better caregiver.

Remember: Your Mom can’t control her dementia symptoms any more than if it were pneumonia, or heart disease, or cancer. Things are happening in her brain that make her do the things that upset you.

Bob Tell,
Author "Dementia Diary, A Caregivers Journal"

Saturday, August 29, 2009

Can Memory Problems Be Caused By High Blood Pressure?

A recent article on the ScienceDaily website quotes research from the August 25, 2009, print issue of Neurology®, the medical journal of the American Academy of Neurology that suggests “that people with high diastolic blood pressure, which is the bottom number of a blood pressure reading, were more likely to have cognitive impairment, or problems with their memory and thinking skills, than people with normal diastolic readings...High blood pressure is defined as a reading equal to or higher than 140/90 or taking medication for high blood pressure.”

Here’s the website for the full article:


As my book, “Dementia Diary,” points out, my mother’s disease was a mult-infarct (or vascular) dementia. She had a history of high blood pressure and was not reliable about taking her medications to control it. Did this lapse lead to her cognitive decline. We’ll never know for sure, of course, but the likelihood is that it did.

I seem to have inherited her HBP problem but am compulsive about checking my pressure morning and night at home, and about taking my meds. Better safe than sorry.

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

Sunday, August 2, 2009

Frustrated by Medicare Rejections?

About a year ago, I published a popular article on this blog entitled "How To Win A Medicare/HMO Appeal." I was recently asked to repeat it for those readers that might have missed it. Here it is:

"These days, almost every senior has experienced denial of Medicare payment for a legitimate health service by an HMO or other insurer—but you don’t have to passively accept the denial. I didn’t. It was time consuming but persistence usually paid off in reversals of these denials.

When my mother was enrolled in one of those so-called comprehensive health plans for seniors, it seemed as though every doctor she saw and every procedure or treatment provided produced an immediate letter of rejection.

As a result, I had a chance to hone my skills at appealing these actions. I believe that the appeals process may deliberately use cumbersome and bureaucratic procedures with intent to discourage appeals. Faced with this hassle, many folks just give up in disgust and pay the bills out of pocket. This is unfortunate.

My take is that you can get many of these rejections reversed with persistence and a little bit of knowledge. As just one example, how many of you know the following Medicare rule?

The HMO/CMP Manual #2116 states that it is the Health Plan's responsibility to ensure that physicians or providers know whether services are covered by Medicare or by the Plan as an additional or supplemental benefit and that they properly use the authorization system. If the Medicare beneficiary receives services under the direction or authorization of a plan physician and the beneficiary has not been informed that he or she is liable for the costs of such services, then the Health Plan must pay for such services."

This rule can be one of the most important arrows in your quiver. In most cases, a physician orders the medical service being denied without specifically informing the patient (or representative payee) that he or she might have to pay for the service. If they don’t tell you, you don’t have to pay!

This is especially true in senior housing settings where patients may not have the cognitive awareness to understand complex Medicare and insurance rules anyway.

Another truism is that organizations such as health insurers must follow their own procedures to prevail. If they fail to do so for any reason it significantly weakens their case. The good news is that they are often victims of their own complexity and, if you watch carefully, you may catch them diverging from their own procedures. Document this and call them on their failures. Examples of successful letters I have used are available on request. Try it! You’ll be pleased at the results."

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

Thursday, July 9, 2009

Will you forgive a bit of shameless commerce?

As you know, my book "Dementia Diary, A Caregivers Journal" is available on Amazon and Kindle. Many caregivers have purchased it and have written to me about it's help in easing their difficult and heart wrenching burdens. This is very satisfying to me and, of course, my mother would be thrilled (if she were alive and cognitively sound) to know that her own suffering has eased the suffering of others.

Now, a new website sponsored by Scribd (http://www.scribd.com), has made a version of Dementia Diary available for LESS THAN ONE THIRD OF THE PAPERBACK PRICE. I believe that Scribd has the potential to revolutionize the book publishing industry—to do for publishing what iTunes has done for music—and I am excited to have Dementia Diary featured by Scribd.

Many more caregivers can now have access to Dementia Diary. If you are one of these new readers, please let me know how it has helped you with your own caregiving situation. Here's the website:


You can click the link to the right under "Bob Tell's Websites."

Best wishes,
Bob Tell

Tuesday, June 30, 2009

Can Statins Help Prevent Dementia?

We all think of statin drugs (like Lovastatin, Crestor, Zocor, Pravachol, etc.) as protecting folks with high cholesterol against heart disease by lowering cholesterol. But what if statins have other good properties? According to an article in the June issue of the "Journal of Alzheimer's Disease," and reported in "Medical News Today," a current study demonstrates "that statins can protect nerve cells against damage which we know to occur in the brain of Alzheimer's disease patients." For more details, see the following website:


So far, the results have been in animal studies, but it is a hopeful finding that may help in the fight against Alzheimer's and other dementias.

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

Wednesday, June 17, 2009

Foundation Announces “Turn Up the Heat on Alzheimer’s” Campaign

The following post is taken from a press release prepared by The Fisher Center for Alzheimer’s Research Foundation which announced it is moving forward with an online campaign to help fund new discoveries into Alzheimer’s disease:

The campaign, titled, “Turn Up the Heat on Alzheimer’s” has a set goal to raise funds and awareness for Nobel laureate Dr. Paul Greengard’s research laboratory in The Rockefeller University, during summer 2009 to help fund Alzheimer’s disease research. This fundraising campaign initiative is being headed by Fisher Center for Alzheimer’s Research Foundation’s President and CEO, Kent Karosen.

“The scientists we fund under the direction of Nobel laureate Dr. Paul Greengard are on the brink of exciting new discoveries. Dr. Greengard has authored almost 1,000 scientific publications. And when he gets excited about a new discovery – so do we. Alzheimer’s is a terrible disease. It robs it victims of their memories in what should be the golden years of their life. The time to act is now,” says Mr. Karosen.

Mr. Karosen has pledged that every dollar raised during the campaign will go directly to Alzheimer’s research.

The “Turn Up the Heat on Alzheimer’s” campaign is a nation-wide Alzheimer’s disease fundraiser reaching out to residents, companies, associations, and the online social network community to pledge their financial support. Opportunities to give to the campaign are available through the website: www.ALZinfo.org/team. Fundraiser’s can upload their own photos, personal message, and set their goal amounts. Users of Facebook Causes and MySpace will be able to add donation badges to their profiles. Preserving Your Memory: The Magazine of Health and Hope will feature the top fundraiser in their fall 2009 issue.

About the Fisher Center for Alzheimer’s Research Foundation:

The Fisher Center for Alzheimer's Research Foundation is a leading source of funding for Alzheimer’s research. It serves Alzheimer’s patients and their families to understand the causes of Alzheimer’s, to discover a cure, and to improve the lives of people with the disease. Nobel laureate Dr. Paul Greengard directs the Foundation’s team of internationally renowned scientists, who have been at the forefront of research providing the conceptual framework for understanding Alzheimer’s disease. Information about the Foundation is available at www.ALZinfo.org

For more information about the “Turn Up the Heat on Alzheimer’s” Campaign through the Fisher Center for Alzheimer’s Research Foundation and www.ALZinfo.org, please contact Betsey Odell, Vice President for Development, at 646-381-5148 and betsey@alzinfo.org

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

Monday, June 15, 2009

Take Your Oxygen First

I just came across a new book called "Take Your Oxygen First" that I think will be helpful to caregivers. It is co-authored by Leeza Gibbons, James Huysman, and Rosemary DeAngelis Laird.

The press release states that the book: "contains timely medical and scientific information about memory loss disorders, provides practical information and advice for caregivers and shares the experiences of families of caregivers across the country."

The bible of practical information for dementia caregivers is, of course, "The 36 Hour Day," by Nancy Mace and Peter Rabins. "Take Your Oxygen First" is a good supplement to the Mace/Rabins book but cannot be a substitute for it.

You probably need both in your library, next to your dogeared copy of "Dementia Diary" by yours truly :-)

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

Saturday, June 6, 2009

Can Power Lines Cause Dementia?

I don't have the expertise to say one way or another. However, the following study was reported in April by Natural News.com:


"Living near power lines may significantly increase a person's risk of death from Alzheimer's disease or senile dementia, according to a new study conducted by researchers from the University of Bern, Switzerland, and published in the American Journal of Epidemiology. The study is the first to definitively link exposure to low-frequency electromagnetic fields to elevated mortality from dementia."

The full report can be found at this website:


Can this be true?

My own view about such studies is to wait until the findings are replicated by other scientists before rushing off to make major changes in lifestyle or living arrangements. Don't we keep hearing about cell phones and brain cancer, with not much in definitive proof as of yet?

So if you or a loved one lives near power lines, don't panic—but it may be worth keeping an eye out and an ear tuned for more on this topic.

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

Tuesday, June 2, 2009

Free Memory Screenings

Johnson & Johnson's website "Strength for Caring" publishes "Caregiver News" which is chock full of resource information for eldercaregivers. On May 26, 2009, they reported on the following program of free memory screenings:

"As part of its ongoing initiative to promote early detection of memory problems and successful aging, the Alzheimer's Foundation of America (AFA) recently introduced a new program that encourages local organizations across the country to offer free, confidential memory screenings and education about brain health throughout the year."

A full article on this important program is available at the following website:


I recommend taking advantage of this resource if it is available in your community. So please stop worrying about memory loss and get yourself or your loved one screened tomorrow.

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

Wednesday, May 20, 2009

What Does Insulin Have To Do With Alzheimer's Disease?

ScienceDaily recently reported the following:— "A Northwestern University-led research team reports that insulin, by shielding memory-forming synapses from harm, may slow or prevent the damage and memory loss caused by toxic proteins in Alzheimer's disease.

The findings, which provide additional new evidence that Alzheimer's could be due to a novel third form of diabetes, was scheduled to be published online the week of Feb. 2 by the Proceedings of the National Academy of Sciences (PNAS)."

For more information, go to this website:


One of these days we ARE going to beat this thing!

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

Tuesday, May 5, 2009

HBO's "The Alzheimer's Project"

By now I 'm sure you have heard of the HBO special series about Alzheimer's Disease that will begin in most communities on Sunday, May 10th. They have done an excellent job of getting the word out. But just in case you've missed it, here's the website and a brief quote from that website:


"THE ALZHEIMER'S PROJECT features a four-part documentary series, 15 short supplemental films, a robust website, and a nationwide community-based information and outreach campaign. A book published by Public Affairs Books was developed by the producers as a companion to the project. HBO will use all of its platforms, including the HBO main service, multiplex channels, HBO On Demand, HBO Podcasts, hbo.com, HBO Channel on YouTube, and DVD sales to support the project. In addition, all films will stream free of charge on hbo.com and will be offered for free on multiple platforms by participating television service providers."

This is an important event for those of us in the caregiving community. Don't miss it!

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

Tuesday, April 28, 2009

Investigational Clinical Amyloid Research in Alzheimer's

I recently learned about the ICARA Study. The letters stand for "Investigational Clinical Amyloid Research in Alzheimer's." Here is what I know about it:

Physicians in the United States and Canada are looking for volunteers to participate in the ICARA study, a clinical study evaluating the safety and effectiveness of an investigational drug (bapineuzumab) that may help slow the progression of Alzheimer’s disease.

They are looking for men and women who:
· Are between 50 and 89 years of age,
· Have a diagnosis of mild to moderate Alzheimer’s disease, and
· Have a caregiver who is willing to be involved in the study with them.

Study participants will join more than 2,050 volunteers at 200 study sites across the U.S. and Canada. The study will last up to 83 weeks and all study-related procedures and medication will be provided at no cost. There is no charge to participate in this study. During the study, each participant will be monitored by a medical team, including a physician.

Here is what I don't yet know about it:

Who is sponsoring it? Who is paying for it? Whether the investigators are being compensated by a company that stands to profit from the results. In other words, how scientifically "pure" is the research design and control over the ultimate report of the study findings?

I don't mean to cast suspicion on what may be an incredible opportunity to participate in a significant advance in our fight against one of the main health care scourges of our times: Alzheimer's disease. But I don't know what I don't know and recommend anyone interested in participating to do due diligence before signing up.

For more information about the trial, visit www.ICARAstudy.com or call 1-888-770-6366. Also Google "Investigational Clinical Amyloid Research in Alzheimer's" and surf around. Let's hope this study will yield important results for all of us.

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

Monday, April 20, 2009

Is Long Term Care Insurance Worth The Price?

That depends. It seems to me that if you've seen one long term care policy (ltcp), you've seen just ONE. While many of the features are becoming more standardized among insurers, there may still be important differences in benefits from policy to policy.

Here's what happened with my mother. She had a bias against anything that contained the words: "nursing home." Not an unusual bias among aging loved ones. Anyway, Mom decided to let a salesman sell her a home care policy, one that limited benefits to services delivered to her in her home. In return for a rather substantial premium (she was in her 70's when she purchased this policy--a time when premium rates become exhorbitant), Mom thought she'd receive skilled nursing care, PT/OT/Speech, custodial, incontinence, and related services (if she ever needed them) IN HER HOME.

Try as I might to persuade her to buy a broader policy for only a litte bit higher premium, she balked. "I'm never going to a nursing home," she said. "So why pay for something I'll never need."

Fast forward a few years to when Mom, in the early flowering of her dementia, moved into a home for the aged. Not a nursing home, but congregate housing for seniors. Gradually her ability to independently dress, toilet, be medication compliant, transport herself, and so forth, decreased and she needed fee for service assistance from specialized caregivers. Guess what? After years of paying premiums, her insurer refused to pay for these services. Why? They took a very narrow definition of the word "home" and decreed that a "home" for the aged did not qualify. To collect on her policy, Mom would have to be housed in her own house.

Turned out there was nothing we could do. I complained that her "home for the aged' was, in fact, her current home and that it was not a nursing home. The insurer didn't care. They had fond a loophole to avoid paying and they weren't going to budge.

The lesson, of course, if you are interesed in "ltcp's" for yourself or a loved one is to carefully read, analyze and compare policies from many insurers, and especially to study the small print. Easier said than done but not impossible. Very time consuming, but well worth the time.

This kind of coverage is not for everyone. There are some good sources of information on the web, in Consumer Reports, and elsewhere that will help you decide if it's right for you. My message, though, (and my mother's, if she were able to do it over again) is to be very, very careful and to make sure you know exactly what it is you may be buying. As with everything else, let the buyer beware.

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

Sunday, April 12, 2009

Are You Confused by Medicare Rules?

If you, like most people, sometimes have trouble dealing with all the arcane rules and regulations of Medicare, there's good news. The Medicare Rights Center (MRC) has been helping people with Medicare understand their rights and benefits since 1989.

In their own words (see their website: http://www.medicarerights.org/): "The Medicare Rights Center is a national, nonprofit consumer service organization that works to ensure access to affordable health care for older adults and people with disabilities through counseling and advocacy, educational programs and public policy initiatives.

Do you need help with navigating the Medicare system? Are you worried about gaining access to the quality care you deserve? MRC claims to be the largest and most reliable independent source of Medicare information and assistance in the United States.

Disclosure: For a time I was a member of MRC's Consumer Action Board, so I have a positive bias about the good works this organization represents. But they need to be better known, in my opinion.

I hope all of you, whether over 65 and receiving benefits, representing a loved one who is enrolled, or looking forward to your own participation in Medicare~whatever your situation~I urge you to surf over to their website now and get to know what MRC has to offer.

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

Friday, April 3, 2009

Have You Read Memory Lessons?

No? Well, you should. "Memory Lessons, A Doctor's Story," by Dr. Jerald Winakur, is (in the words of its press release) "an honest and courageous account of his father's last years, the life he slowly forgot, and what a family faces when dementia begins destroying memory after memory, ability after ability."

I've just finished this book and must say that the press release doesn't do it justice. It is a much bigger and better book even than are expressed by the superlatives of the PR, and it should be required reading for all caregivers.

When I wrote my memoir, "Dementia Diary, A Caregiver's Journal" I believe I was the only man at the time to have published this kind of portable support system for caregivers of Alzheimer's and other dementia disease sufferers. We all know that most caregivers are women, but we tend to forget that large numbers of men are also the sole caregivers to demented parents or spouses. The outpouring of positive comments I receive regularly from both men and women readers reinforces my belief in having male perspectives about caregiving widely available in published form.

So men caregivers need a voice in the book market place too and, until recently, "Dementia Diary" was alone in providing it. Now we also have "Memory Lessons," and what a powerful voice it is. Dr. Winakur brings the perspective of a physician, an internist and geriatrician, to the role of a caregiving son. What a combination! It belongs on your bookshelf (next to "Dementia Diary", of course).

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

Monday, March 23, 2009

Have You Heard About Ruby's Bequest?

As you know, I sometimes make a point of reporting about other blogs and sites that are making a unique contribution to caregiving. I recently learned about a project you might be interested in. Basically it’s a virtual-reality project called Ruby’s Bequest, sponsored by United Cerebral Palsy (UCP), AARP, and the Institute for the Future (IFTF) which seeks to develop solutions to the imminent care-giving crisis.

Experts are predicting that, in the near future, there will be shortages of paid care-givers and direct service providers, shortages in government resources to assist people who use care services, and an influx of people who will need said services as more Boomers with disabilities start aging, and as more Boomers start aging into disability.

Ruby’s Bequest is a story-telling project which aims to provoke a massive brainstorming session amongst all its participants. During the course of the project, participants will be presented with various future scenarios containing various care-giving related problems. They will then have to put their heads together and imagine creative solutions to those problems.

The end result of the project will be a compendium of novel ideas and solutions to the near-term problems associated with care-giving and caring in general. Hopefully it will also serve as the beginning of a conversation about a new, more holistic and sustainable way to look at the role of caring in society.

The creator's of Ruby’s Bequest state that:

- it is a “massively multi-player future forecasting role-playing experience” designed by United Cerebral Palsy (UCP), AARP, and the Institute for the Future (IFTF).

- it is for people with disabilities and people without disabilities alike.

To look at the website go here: http://www.rubysbequest.org

- it is a way of crowd-sourcing for innovative solutions to challenges facing the care-giving community.

- it takes place in the fiction town of Deepwell, USA, where a cast of characters (played by IFTF operators) interacts with online participants (the public) and gives them a series of “caring challenges” to overcome.

To find out what’s going on in Deepwell, go here: http://www.rubysbequest.org/faq.aspx

- it requires game participants to send in their suggestions and ideas for how to solve the problems posed by each “caring challenge”, either via email, telephone, or video message.

What a fun and challenging way to deal with our very serious subject!

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

Thursday, March 12, 2009


According to an article in the October 29, 2008, issue of the St. Petersburg (Florida) Times, it may be able to help. Possibly quite a lot.

Times correspondent, Eve Hosley-Moore, writes about Dr. Mary Newport's husband Steve, whose results in an early Alzheimer's test improved after adding coconut oil to his diet.

As her husband's condition deteriorated, Dr. Newport (a neonatologist) learned about a new medication undergoing clinical trials. Its primary ingredient is an oil composed of medium chain triglycerides known as MCT oil. She also learned that this medication derived its MCT oil from non-hydrogenated coconut oil.

When Steve Newport was not accepted for a clinical trial using MCT oils, Mary Newport went to a health food store and purchased commercially available non-hydrogenated coconut oil. The next morning she stirred two tablespoons of coconut oil into her husband's oatmeal. The results for Steve were amazing. To find out more about how Steve Newport improved I recommend reading the entire article which can be found at the following URL at Tampabay.com:


Would coconut oil help every dementia sufferer? That's what the clinical trials are trying to determine.

The article also stresses the importance of consulting a physician before trying coconut oil at home. One expert pointed out that eating too much of one type of fat can actually be dangerous.

Everyone involved, including Dr. Newport, understands the need for additional research. Nevertheless, she is happy with the way her husband has responded so far, and she wants to share the good news.

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

Wednesday, February 25, 2009

Did You Ever Feel This Way?

Two poems from "Dementia Diary" written while Mom was still alive. Ten years separated the writing of these verses during which she surprised everyone not only by surviving, but also by becoming gentler and more loving year after year. She's gone now, but the feelings that motivated the writing remain fresh and new. I hope they are meaningful to you too.


It's downhill now and going fast.
I don't know how long she can last.
I picture her in decades past;
And I deny the truth.

She was a woman smart and bright,
Whose energy gave off a light.
I picture her all dressed in white;
And I deny the truth.

Her beauty gone, her judgment lost.
Her affection for me now is forced.
She's terrifying when she's crossed;
And I deny the truth.

She's widowed now and all alone.
She sets a self-destructive tone.
It's hard to love this angry crone;
And I deny the truth.

I grieve for who she was when I
Was young and did not have to lie.
So many memories to untie;
And I deny the truth.

The truth is that she soon may die;
And then I'll have to learn to cry;
And also have to face this lie,
And not deny the truth.


The truth is that she did not die.
She was not ready to say goodbye;
But like a fairy butterfly
she makes me face the truth.

From her cocoon she struggled out
not knowing what her life's about;
too frail to rage and rant and shout.
She makes me face the truth.

She's gentle now, her anger gone,
she's sweet and kind, a paragon
who's loved and praised by everyone.
She makes me face the truth.

Her memory is very weak
as is her shrunken bent physique.
Her voice is raspy. When she speaks
she makes me face the truth.

She can't recall her family,
and friends she knew will ever be
gone, forgotten, absentee.
She makes me face the truth.

The truth is that I miss the days
she made me crazy with her ways.
This cheery cherub's face portrays
a stranger's unknown truth.

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

Tuesday, February 17, 2009

Did I Lose My Job?

Thankfully, I have no shortage of friends, many of whom went through the whole caregiving experience before I did. They are full of good advice, for which I am eternally grateful.

Shortly after Mom died, I didn't know what to do with myself. No more emergencies, nursing home visits, assessment meetings, phone calls, doctor queries, pamper purchases, hospice evaluations, etc., etc., etc. I suddenly had lots of extra time on my hands and, instead of enjoying it, I felt at loose ends. So I complained to a buddy and can you guess what he said?

"Bob," he said. "You not only lost your mother, you lost your job!!!"

That hit me right between the eyes. I'd never before thought of my caregiving as a "job." But think about it. I didn't get paid, of course, but all the other elements of a job were present, and when they suddenly disappeared, it felt very strange to say the least. But my friend's comment cut through my confusion on this issue and helped me to make the adjustment to a post-caregiving role.

How about you?

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

Sunday, February 8, 2009

Did I Do enough?

So it's over two years since Mom finally passed peacefully away and I'm finally getting used to the idea and feeling good about the things I was able to do for her during her last, dark years. No more guilt and no more regrets. It has taken all this time.

Before she died, a friend who had been down a similar path with his mother said this to me: "Bob, no matter how much you have done for her, when she dies you will feel like you didn't do enough." I listened respectfully and thought: 'Not me. I've been there for her through all the trying stunts she pulled as her mind and temperament went down the tubes.'

He was right, of course. From the moment the last shovel full of earth fell on her coffin until just a few months ago, I was hit with full fledged guilt for all the squandered opportunities to do even more for her—that I didn't do. The more that time passed, the more my memory focused on positive things in our mutual past and the less clearly I recalled the negatives—and the guiltier I felt.

There's no help for it. So I'll say to you what was said to me: "No matter how much you have done for your loved one, when death finally comes you will probably feel like you didn't do enough."

If it happens to you, roll with it. I'm told now by experts in caregiving that it's a common feeling and that it passes. I can now say it's true.

It passes!

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

Wednesday, January 28, 2009

How Many Different Dementias Are There?

This is a repeat of the single most popular post on my blog, one that is also 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 July, 2008. It gets hundreds of "hits" every month and readers frequently tell me how helpful it is to them. So here it is again. 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"

Monday, January 19, 2009

Oops, I forgot your name!

I'll never forget the shock I felt when I first heard the following comment from a medical professional: "It's not about memory, it's about cognition."

He was talking about dementia and what, in his opinion, is a popular misconception that leads to a lot of unnecessary worry by people who are suddenly forgetting names and where they placed things like the car keys.

What did he mean, "it's not about memory?" After all, it was obvious to me that it was indeed about memory. I was closely monitoring my mother's symptoms as she sank deeper and deeper into the opaque fog of her multi-infarct dementia. She was forgetful about everything, including exactly who I was. I mean, the nurse asked her during one of my visits:

"Look who's here, Millie. Do you know who this is?"

Mom smiled and said, "Of course I do. He's my grandson."

"No Mom," I said. "I'm your son."

"I knew that," she said, still smiling.

So wasn't that about memory? Of course it was. What the medical professional meant was that it's more complicated than that.

Most of us have heard the expert statement that if you forget where you put your car keys, you don't have to worry about dementia. But if you forget what the car keys are for, that's serious. That could be dementia. That's not just a memory problem (although memory is certainly part of the picture), that's cognition, which the dictionary defines as: "the act or process of knowing; perception."

It's subtle but it's real. Mom didn't just forget me. In fact, she remembered me. She just didn't know who I was.

This isn't just semantics. As we age, most of us develop retrieval problems where we can't instantly recall something or someone that should be very familiar to us. According to my medical professional, that's a normal memory issue far removed from dementia.

But it's still darned annoying, isn't it?

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

Wednesday, January 7, 2009


This is my fifth post based on a policy paper of the Greater Detroit Area Health Council (GDAHC), entitled: "DESIRED CHARACTERISTICS OF A SYSTEM OF SERVICES FOR OLDER ADULTS." The full policy paper is very detailed and expands upon the lists I have quoted in this and previous posts with comprehensive narrative. Nevertheless, the basic lists are self-explanatory. The following list of "Service Delivery Settings" is a direct quote and an excellent example of a useful guide:


• Home (single or multiple unit)
• Senior centers, day care centers, day hospitals
• Supervised apartments, congregate housing
• Homes for the aged
• Adult foster care facilities
• Basic nursing facilities
• Skilled nursing facilities
• Rehabilitation units/facilities
• Hospice
• Hospitals
• Practitioner offices
• Ambulatory care centers
• Specialized nursing homes for the mentally ill and mentally retarded
• County medical care facilities"

Can you think of anything to add? If so, please comment.

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