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

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

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

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

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:

“DEMENTIA IS A DISEASE PROCESS”

“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"
http://www.dementia-diary.com

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:

http://www.sciencedaily.com/releases/2009/08/090824182430.htm

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

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