This article 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
http://www.dementia-diary.com
Friday, July 4, 2008
Wednesday, June 25, 2008
Comparing Alzheimer's With Other Dementias
Here’s a popular article I wrote that is appearing on eldercare blogs, zines and sites throughout the web. It first appeared on my former website on September 17, 2006. 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.
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.
Longevity and its hazards
Sadly, the interest in Alzheimer's and other Dementias is universal. So is caregiver burnout. The good news is that modern medical technology has enabled millions to experience longer life. The bad news is that many of these aging millions live longer but don’t really experience it—at least not in the way you and I do (or as they themselves did when they were younger). Their memories are gone or going and their loved ones are grieving for who they were. But caregiver support is available.
This blog is dedicated to all caregivers of aging parents or other loved one’s whose identities have been lost to this terrible process. To encourage discussion and exploration of this timely topic, I have made myself available to community, library, academic and religious groups primarily in, but not limited to, Michigan and Florida. A complete calendar of my scheduled eldercare talks is available on request. If you are interested in scheduling a presentation, please let me know with a comment on this blog or else contact me at: bobtell@mac.com.
Here are just a few of my past presentations:
Warren Arsenal, Warren MI: Civilian Employee Group
Selfridge Air National Guard Base: Civilian Employee Group
Northbrook Presbyterian Church, Beverly Hills MI: Adult Education Group
Madonna University Library, Livonia MI
Temple Beth El, Bloomfield Hills MI: Community Library Program
Birmingham Rotary
Madonna Magazine—Catholic Television Network—TV Interview
Metro Detroit JCC Book Fair
Washtenaw (Ann Arbor) JCC Book Festival
Wayne State University, Detroit: Writing & Publishing Workshop
This blog is dedicated to all caregivers of aging parents or other loved one’s whose identities have been lost to this terrible process. To encourage discussion and exploration of this timely topic, I have made myself available to community, library, academic and religious groups primarily in, but not limited to, Michigan and Florida. A complete calendar of my scheduled eldercare talks is available on request. If you are interested in scheduling a presentation, please let me know with a comment on this blog or else contact me at: bobtell@mac.com.
Here are just a few of my past presentations:
Warren Arsenal, Warren MI: Civilian Employee Group
Selfridge Air National Guard Base: Civilian Employee Group
Northbrook Presbyterian Church, Beverly Hills MI: Adult Education Group
Madonna University Library, Livonia MI
Temple Beth El, Bloomfield Hills MI: Community Library Program
Birmingham Rotary
Madonna Magazine—Catholic Television Network—TV Interview
Metro Detroit JCC Book Fair
Washtenaw (Ann Arbor) JCC Book Festival
Wayne State University, Detroit: Writing & Publishing Workshop
Tuesday, June 17, 2008
How to win a Medicare/HMO appeal!
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.
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.
Tuesday, June 10, 2008
Book Review
Another wonderful book that I highly recommend is Carol Bradley Bursack’s “Minding Our Elders."
Back when I was the frazzled son of an aging mother with dementia (during the long months prior to her death), I found validation and comfort in Bursack’s exceptional book. Eldercare is often a lonely business and one that places a profound mental and physical burden on the caregiver. Healing begins with the discovery that one is not alone. “Minding Our Elders” provides ample evidence that eldercaregivers have plenty of company these days.
Bursack uses a professional journalist’s interview technique to compile the trials and challenges of over twenty-five caregivers who have poured out their hearts to her.
There is a relaxed intimacy to her writing style that immediately engages the reader. It feels as though each of her subjects has become your own personal friend who is quietly sharing with you the private pain associated with care of their loved one.
Bursack introduces each person with a description of surroundings, clothing, gestures and expression that reveals a sharp eye for detail—the kind of detail that imbues the people and their stories with humanity. Her faithful and insightful reporting of these stories, told in each caregiver’s own words, has created a sensitive and well written book that is must reading for anyone facing the decline of a parent. More information can be found at: http://www.mindingourelders.com
If you do read “Minding Our Elders,” let me know if you agree with my review.
Back when I was the frazzled son of an aging mother with dementia (during the long months prior to her death), I found validation and comfort in Bursack’s exceptional book. Eldercare is often a lonely business and one that places a profound mental and physical burden on the caregiver. Healing begins with the discovery that one is not alone. “Minding Our Elders” provides ample evidence that eldercaregivers have plenty of company these days.
Bursack uses a professional journalist’s interview technique to compile the trials and challenges of over twenty-five caregivers who have poured out their hearts to her.
There is a relaxed intimacy to her writing style that immediately engages the reader. It feels as though each of her subjects has become your own personal friend who is quietly sharing with you the private pain associated with care of their loved one.
Bursack introduces each person with a description of surroundings, clothing, gestures and expression that reveals a sharp eye for detail—the kind of detail that imbues the people and their stories with humanity. Her faithful and insightful reporting of these stories, told in each caregiver’s own words, has created a sensitive and well written book that is must reading for anyone facing the decline of a parent. More information can be found at: http://www.mindingourelders.com
If you do read “Minding Our Elders,” let me know if you agree with my review.
Monday, June 9, 2008
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.
"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.
Saturday, June 7, 2008
My Learning Curve
Just when I thought I knew who my audience was, I discovered a group that I hadn’t consciously considered before. Here’s what happened. I was asked to speak about Dementia Diary at a Catholic university. My audience consisted of quite a few Nuns with caregiver responsibilities for Sisters afflicted with various kinds of dementia. Until then, I thought of my readers as mostly children or spouses of loved ones. Since then I've realized that the group is so much broader than that and so is my thinking. Dementia affects ALL categories of human beings...so, of course, members of religious communities, unmarried adults, significant others, residents of group homes, etc., etc., etc., all can have people in cognitive decline and caregivers struggling with their welfare. In retrospect, that should have been obvious—but my learning curve finally caught up with the reality.
Subscribe to:
Posts (Atom)