Wednesday, April 29, 2015

Blog Stats: A Rising Tide of Interest From Far And Wide

In the very beginning with this blog my focus was on making sense of an often senseless world. Today, it remains the same, just with a reframing of the challenges into a broader perspective.

We are not alone. The world is watching, listening and learning. About Us. About Themselves. 

I've been fortunate to travel extensively and gave my Mom the gift of travel starting when she turned 62 and began receiving "retirement" benefits. 

It was one of my greatest gifts to her -- freedom to make choices and decisions when she had the greatest ability and when life hadn't thrown her the last curve ball of Lewy Body Dementia.

I'd always wanted Mom to have this opportunity because she loved history, archaeology, different cultures; she was far ahead of her time and of her "economic place". 

Mom never had the benefit of higher education when she was young; she walked a long distance to go to school in a rural Illinois town and then she was needed at home to care for a sister and brothers. 

When she decided to go back for her High School GED in her early 50's when I was in college (thanks to her guidance, a scholarship and my determination), I was so happy for her and proud of her achievement. 

She'd weathered Cosmetology School when I started attending school all day; a plan to escape the hardships and the degradation imposed on both of us by a marriage that was crippled by my father's alcoholic addiction.

When life presented a challenge (Mom fell and broke her wrist and had to close her small beauty salon), we did what we'd always done and turned it into an opportunity -- to become a multi generational family. 

Multi Generational Family Living -- A choice we believe to this day was beneficial to every member when it was made and throughout almost forty years of living together as a family unit and beyond.

Mom traveled the world, literally. She faced modes of transportation we'd call archaic and physically challenging in countries that were still struggling to come into the 20th Century. They had amazing histories, wonderful scenery and emerging societies we're just beginning to understand.

We believed and still do, we keep the doors of the world open one trip at a time. I believe we also keep the world open one blog entry at a time and the Stats for where this blog is reaching are reflecting that belief.

The United States gets lots of hits but so do far lesser known areas including Moldova. 

The Stats I see are amazing as days often produce more readership from countries we see as far less technologically advanced than the United States. 

Touching peoples minds and hearts. Opening windows and doors of opportunity. If just one person sees and makes a difference this blog has succeeded in making positive change.

In Peace and Justice life continues and aging is natural and often longer. With expanding ability to provide better healthcare and share information we give longer life to one another. 

Age is wisdom, experience and knowledge if we chose to value it. 

Some societies have believed we need to "erase" the past and that includes various people and ideas. 

What are you choosing to share today? What will you bring to the table tomorrow? Where will you spend time and what will you do with the minutes, hours and days you've been given?

As another Mother's Day approaches, I give thanks for my mother, my friend, my life companion, my guide and my mentor. Through this Blog, her story and ours is a reference, a reflection and a rekindling of the spirit of family and the spirit of Love.

Sunday, April 26, 2015

Low Tolerance And A Boiling Point Developing?

Another one of my "long ago" started entries that I decided, for whatever reason at the time, to pass over, move on and yet keep...for the future.

The future is today.  This was started in April 2015. Fast forward to today, October, 2019. Over four years. So much has happened including moving out of the depths of rationing and feeling like I really had "something" when I had a quarter in my hand -- a dollar.....well, that was wealthy.

A hiccup in life. We didn't know it wouldn't last. We were uncertain as to how we would move from day to day and sometimes within a day -- to find the ability to add a few gallons to the gas tank of a car we were given by a wonderful member of our extended family.

FAMILY.  That's another entry. There's a world of difference -- the here and now and the ever after--in that word. I turn away from those who define "family" as any related group of people. I've learned how blood does not a family make; life lived for family is what differentiates.

TOLERANCE.  We talk the talk but don't walk the walk when it comes to those who are "ahead of us" on life's path by two or more decades.

TV personalities and others -- especially those hitting the marks of being in their 50's 60's and 70's and well beyond, talk about how "young" they believe these ages now are.

OBVIOUSLY.  They made it...they're now a part of this segment of the population. Whenever you're "a member" of something you see and react differently; some turn away, some move away and some stand up and "shout out" raising a new found voice for "their" cause.

Makeup, clothing and healthy living have made significant changes in our appearance, that's true.

These are the fortunate few -- for however long it continues, that is. They escape the intolerance today's society has for the aging and the aged.

It's all about space. Not just a position or job but "being there" at all that's becoming questionable for some very vocal people.

I mentioned the intolerance in my daughter's "class" for a member in their 70's learning new skillsets; highly capable, very active and "hand picked" for the program going up against many decades younger, he's proving age should not be seen as an obstacle and how important it is to challenge the mind at any age.

Well, he was told the other day not to expect assistance getting a job after the program completed. Really? This was the intent and purpose of the program when he began. There was no "segregation" of him from the other participants; he was in the classroom daily and his work while perhaps slower in productivity than some was still keeping pace with several of the "youngest" students.

Now, as the program hits its mid way point, he's told not to expect "assistance" with what the program was designed for -- what the program promotes far and wide to individuals in high positions as a "model program"?


That should be the mantra of the program "designers" and they should not keep moving in other directions, expanding into other locations both local and elsewhere, if they cannot provide what they tell others they can -- an education at a level "anyone" can master to the point of getting gainful employment.

Does that constitute bait and switch or is it false, misleading and deceptive advertising or what?????

This program promotes having found hundreds of jobs in the first year of its existence. And, in fact, advertises having had students in their late fifties in the past. 

What about the guy in the class in his mid 50's? Why isn't he being advised the same? 

I have low tolerance for Ageism. Always have. Even when I was in my twenties I did not understand "setting people aside" or "moving them out" which was a practice at the time.

I'd recommend this gentleman look into employment with Not For Profits who cannot afford the high salaries corporations can afford and would welcome his stability and his dedication. He has nothing to prove; he has no "career" to create. He's proven himself ten times over and has the professional credentials to prove it. 

Everyone seems to believe you "arrive" in your later years well prepared for a "retirement" where you call the shots, you make the moves and you "enjoy" life.

Doesn't always happen. Life happens. So is this man simply to turn loose, to turn over and to step aside just because the clock kept ticking and he's moved beyond "acceptable" marks on a calendar?

I understand. I've seen the PREJUDICES of decades: RACE, GENDER, INCOME.  They're not new. They're just more abundant and capable.

In the 60's, the saying was "Don't trust anyone over 30".

Think about that, all you Millennials who are in your mid to late twenties and especially you Gen Xers who are well into that age group and beyond -- into your 40's!

You believe you’re “King of the Hill” (not the TV show; an old game) but you’re simply another link in the chain of “getting older” and seen as someone to ignore, to set aside and above all, to tolerate for a little longer until you can be “shelved” or “placed somewhere” generally out of sight and out of mind.

Not all think this way, but many do and those who are aging contemplate “having to move on” into a “retirement community” so as not to be a “burden” to family.

AGEISM. It's been around for a very long time. As a fad and as a detriment to society; an immature reaction to anyone or anything not wanted or seen as "old fashioned" or “not one of US”.

AND, FROM BASIC SURVIVAL AND OTHER GREATER CONCERNS GENERATED BY FEAR AT HOME AND ABROAD. Where are all the jobs supposed to come from to support the young, the aging and the older populations -- and an even more important question, how long will they remain?

For the Baby Boomers, "moving on" was a rite of passage and our economy was booming – not just the population. WE NEEDED AND CREATED more jobs and more opportunities for advancement.

The Space Race.  Business Expansion Abroad. We saw life as a never ending "pot of gold" beyond our borders where everything we had, everybody else wanted and "we" would be the ones to provide it for them. 

Women were on the move; they'd experience a "glass ceiling" but at least they were "out and about" and not stuck behind a wringer washer and old sayings about what day it was and what they were supposed to do (Monday washing clothes, Tuesday ironing, etc.)

How naive we were not to see other societies also wanted to be self determining, self sufficient and capable of providing for themselves while wanting to enter into the "competitive" arena and reap the rewards for themselves.

Many "pushed" their kids: first through college and then into homes of their own (or at least apartments). Baby Boomers were referred to as the first "helicopter parents" -- always there, hovering around and "becoming closely involved" in their children's lives.

Could this have been a reaction to the fact many of the Baby Boomer's parents were literally pushed out the door at young ages, most of them, to provide for themselves and to send money home to care for siblings and parents. Or, they were kept at home, the girls/women, to care for siblings in large families until the "chain of command" passed to another sibling who was "old enough" to take over.

Was it this "fear" of taking care of an extended family that put so many aging parents into residential homes or just the many children who moved away, moved on to other spaces and places, lost touch except by "snail mail" or "long distance" calls?

Times were "good" but they were challenging; few talk about the economic crisis we endured about every ten years and the loses to savings and income.

Each generation focuses on their own "problems" or what they see as problems and seldom looks back -- could it be out of fear of "repetition" if we acknowledge the facts of life and living?

Our economy needed the support of more and more independent living situations. Each newly created "household" was important to keep the manufacturing/ economy wheels turning.

Then, we became a consumptive economy, an economy that created obsolescence built in and "teased" us with more and newer possibilities for the same items we'd purchased just a few months or years before.

The mass exodus to Suburbia began after the Korean War when "Levitt Towns" sprung up around major cities. By the 1970's, the "move out" was in full swing bolstered by the Baby Boomers who were married/marrying and starting families of their own.

In the 50's and into the early 60's, marriage was still actively happening right after high school; by the late 60's and into the 70's, it was right after college. The "pill" was just becoming a mainstay of family life and so couples could wait and somewhat plan their families including the size of their "group".

Suburban lifestyle began with the increased use of cars and the elimination of mass transportation has brought on the separation of generations and the negative views of aging, in my opinion. 

We build Suburban housing in areas where we fail to include anything within real walking distance. We see no need for sidewalks and have no desire to "subsidize" or plan for mass transit including the kind that runs on rails or wheels.

SEPARATION. ISOLATION.  It began years ago and now we support this practice pushing our Seniors into "retirement communities" and into "Care Giving" communities where we seldom see them, know little about their daily lives or needs and depend on others to provide them and us with any and all “needs” -- including information and services.

WE TAKE AWAY MOVEMENT. WE TAKE AWAY SELF DETERMINATION.  We believe it's for "their own good"; to "protect them from harming themselves".

We go so far as to place them in "locked units" and "caretakers" (can't bear to call them care givers as they act more like someone taking care of a house or lawn) -- provide "services" when THEY believe there's a need.

SO, is this NEW educational concept joining in with the movement so prevalent in society to cast aside when they feel like it anyone whom they see as a challenge to their "system"?  

For me, I believe we work together; we help one another; we share and we care. It's the basis of a sound and healthy society and economy. 

Take note, Gen X'ers and Millenials or when your walk into the twilight years begins -- at 30 and beyond according to generations before you -- your lives will be even more challenging because you failed, failed to heed the warning that you are next in line in a progression of Ageism Prejudice.

Thursday, April 16, 2015

Medicaid: Think Again If You Believe You'll Bypass This System

Odds are high you or a loved one will enter into a State program as well as a Federal program of personal care within a lifetime.

NOTE:  This is not an ad for Medical Insurance; it's a call to action to realize the problems of medical care and services for our older population are not and will not be served to provide a quality of life we all believe we deserve and need without voices raised and comments made in blogs like this one.

NPR cited recent studies stating the average US citizen has about $75,000 in savings for future needs.

What's your medical coverage provide today? What adjustments are "built in" to the policy and allowed by the company who provides your medical coverage? Ever read the fine print? Do you really know what hidden factors determine what services and medications they will allow? Ever given any thought to the real value of what you receive or could need?

Even if you only have to pay 10% - 20% of the total bill do you know a major medical event can add hundreds of thousands to your "debt"?

Think it will be "written off" or "absorbed" or somehow taken care of?  Not if you have the funds and in today's world that's easy to find out with all the stored information readily available for the right price.

What about a lingering or advancing illness?  A slow moving Dementia like Lewy Body Dementia or Parkinson's. How will that challenge you personally and your family?

What about protecting you from the challenges of Undue Influence, Neglect and Abuse?

Ever read your State laws about these "Elder" challenges?

Are you aware of and familiar with the actual systems and procedures in place to try to obtain assistance or seek remedy?

Declining and eliminated services from underfunded programs and those whose allocations get used within the first few months of their calendar years....

Partially funded programs providing for a "skeleton" organization without sufficient funding to provide needed and necessary paid support -- like Missouri's Ombudsman program...

It's a nightmare of red tape complicated by laws that are unspecific, far too general and usually administered by individuals without significant training or systems and procedures in place to ensure your safety and well being often leading to your life being compromised.

Bottom Line.  Each day more and more people are in need of financial assistance from Medicaid or other services and none of us really know, due to non transparency and clear and concise language, what is being provided, what can be provided and what is denied and for what reasons.

We're told to plan -- to establish Retirement Funds and IRA's and then we find out those administering them have been ill advising us and skimming from the funds for decades.

Yes, there are those who have pensions and great health plans but how long will they last when the Boomers and Beyond start using these funds and health programs?

The Affordable Care Act was founded on the belief those who are well, especially the Millennials, would be "supporting" the costs for those who are in need. 

Do the math and the research and you'll find it's always been those who have get and those who have not wait and hope.

I realize changing the system is a larger job than I can tackle.

What I want is transparency so that the "business" of healthcare and service at all ages is more measureable and decisions can be made that are based on fact and not on glossy marketing products.

The proof is not in the marketing/advertising -- it's measured not on photo ops and Annual Reports 

Senior Services especially those provided by Long Term Care Facilities are measured daily and one resident at a time.

Facilities that are totally transparent and individuals who realize it's important to visit relatives and friends and report openly, to the public, what they see, what they find, is critical to raising the level of care and life for residents.

Question:  What have you experienced while caring for a loved one or friend that has caused you concern or worry? 

Voice your concerns here. Start a conversation. 

The world is waiting and listening. 

Sunday, April 5, 2015

Legal Loopholes: Time To Sew Some Up & Regain Senior's Rights

Since Mom's and our family's many life changing and life ending challenges within the Senior Long Term Care system, I've taken on the responsibility through this blog of educating others to the challenges "behind the curtain" of Senior Care within residential facilities.

Our story began when we went from decades of being a family unit, Mom included, to entering into the world of living and healthcare provided behind doors that were often closed to our vigilance by the facility or blocked by systems and procedures by State Authorities.

This blog is taking to task those who are supposed to serve and protect Seniors and holding them accountable for their actions including neglect and abuse beyond a slap on the wrist as they now receive.

Noticed where Mom's facility had received a "fine" of $8,000.  That's a little over one month's cost of living for one person. The facility serves over 200 people. 

Due to the exceptionally "convoluted" reporting procedure and "hidden" or "lack of accurate information" the value of whatever was done can't be directly associated with any action, reaction, ommission or commission and therefore you and I can't make accurate evaluations of whether or not we want to entrust our loved one into the facility's care.

State reports are often valueless. I know. I've called Hotlines and made direct complaints. Only one time did one examiner ever call me and let me know an investigation was in process but the rest of the time, reports were generated and as per State Law could be read but the content was so abstract no one could tell exactly what the complaint was because it was never stated directly.


The current failure to not provide clear and concise information concerning Long Term Care facility operations including resident and family concerns and complaints promotes more neglect and abuse.

Through close and careful examination of current practices, procedures, laws, rules and regulations within my own State, and general and government publications you might not otherwise find, reading these entrires you can learn and avoid the pitfalls and heartaches our family experienced through learning and becoming an active and involved advocate for Senior Safety and Well Being.

Lesson #1:  Individual States write their own laws concerning residential centers for Seniors.

The States may make laws that do not conflict with the Federal Laws. The States may have laws that are as ambiguous as the Federal Laws. This is what we've found to be the case.

Readers need to cross check within their State of Residency specific State Laws, Rules and Regulations of their DHSS and of their Medicaid systems.

It is the State of Residency that determines the laws, rules and regulations and the Federal level of laws is a far more general guideline.

Our focus is on providing either Laws that ensure the safety of our Seniors or methods through which public opinion, transparency and therefore accountability are immediate.

This blog is focused on detailing facts about Senior Care in facilities where practices and procedures are not in the best interest of the resident and that, unfortunately, appears to be widespread.

This blog is about ammending Federal and State Laws, Rules and Regulations of Senior Care that are not ensuring the safety and well being of Seniors and those who honestly try to provide good care and ensure their well being. Or, providing ways and means for continuing observation, reporting and full disclosure from residents and families who experience neglect and abuse and levels of care that do not provide for individual rights.

We all walk the path, if we're fortunate to live long enough, into the time of needing care giving by others. 

We need the ability to ensure now those who are already there receive our protection, our concern and our supportive and protective action.

US Senator Claire McCaskill is scheduled to come to our area to speak about Senior concerns and speak with residents. I, for one, am interested in showing the Senator pictures we took of the many incidents of neglect and what we consider to be abuse; of providing her with a list of omissions within our State of Missouri laws that cause more harm than good for Seniors both residing within facilities and those residing elsewhere.

Thursday, April 2, 2015

2007: Experts Recommend Personality Tests To Quickly Detect Dementia With Lewy Bodies

Sometimes my ability to uncover information astounds me. 

I'm always researching but realize the internet is often "the luck of the draw" and thankfully my "luck" is high when it comes to finding very necessary information on Dementia and other subjects related to Seniors.

The following is a selection from the website: and I've taken the liberty to highlight sections I've found most valuable.

The date is May of 2007. I'm speechless. In 2012 when I started this blog I couldn't find information and yet the same general resource, Washington University in St Louis who is associated with BJC and Barnes Hospital where my Mom was diagnosed with possible LBD, had this information in their files.

This blog is for you if you're looking for somewhere to turn where someone is dedicated to finding and citing specifics often buried under tons of other papers yet so prevalent to making choices and decisions about yourself or someone you love who's aging.

"Washington University St Louis

Personality changes may help detect form of dementia
May 29, 2007
By Michael Purdy

A simple personality test could help doctors more quickly detect dementia with Lewy bodies, a form of dementia often confused with Alzheimer’s disease, according to a study led by researchers at Washington University School of Medicine in St. Louis.
Dementia with Lewy bodies is the second most common neurodegenerative cause of dementia. It shares many characteristics with both Alzheimer’s and Parkinson’s disease. Getting the correct diagnosis is important because some medications used to treat the mental health symptoms of Alzheimer’s disease can be potentially dangerous for people with dementia with Lewy bodies.
“Patients with Lewy body dementia often have hallucinations and other behavioral problems, so they’re frequently treated with antipsychotic drugs early in the course of their illness,” says lead author James Galvin, M.D., assistant professor of neurology. “However, some types of antipsychotic drugs may put them at risk of serious side effects, so it’s important for physicians to be able to quickly determine who has Lewy body dementia.”
Such side effects include neuroleptic malignant syndrome, a condition where muscles become rigid and the body’s ability to regulate its own heat production breaks down. This can lead to renal failure and death.
The study appears in the May 29 issue of Neurology, the scientific journal of the American Academy of Neurology.
In Alzheimer’s disease, a protein known as amyloid accumulates in the brain. Amyloid is also often found in the brain in patients with Lewy body dementias, but the key diagnostic indicator is the presence of aggregates of the protein alpha-synuclein in brain cells. These clumps are called Lewy bodies.
Lewy body dementia can cause fainting, hallucinations, Parkinson’s-like symptoms such as tremor, rigidity and motor impairment, intermittent alterations in attention and awareness, and memory loss.
The study involved 290 people who were part of a larger study and were tested every year for an average of about five years. 
By the end of the study, 128 of the participants had confirmed cases of dementia with Lewy bodies, 128 had Alzheimer’s and 34 had no form of dementia. 
Researchers followed the participants through death, including autopsy results. During annual interviews, participants or their family members were asked about changes in personality, interests and drives.
BLOG AUTHOR'S NOTE:  Interesting. A five year study. This was written in 2007 so that would be a study that started in 2002. 
Why hasn't more information been placed predominately in the press about this disease that's obviously been important enough to be studied by a world class educational institution focused on medical studies.
BLOG AUTHOR'S NOTE:  I've taken the liberty of highlighting the following passages:
Even prior to diagnosis, researchers more often found passive personality changes in people with dementia with Lewy bodies than people with Alzheimer’s. Such changes included diminished emotional response, disinterest in hobbies, repetitive behaviors, and growing apathy, or lack of interest.
People with dementia with Lewy bodies were two times more likely to have passive personality traits at the time of the first evaluation than people with Alzheimer’s disease. By the time of death, up to 75 percent of those with dementia with Lewy bodies had passive personality changes compared to 45 percent of those with Alzheimer’s disease.
“Currently we mainly look for memory problems and other cognitive problems to detect dementia, but personality changes can often occur several years before the cognitive problems,” says Galvin. “Identifying the earliest features of dementia may enable doctors to begin therapy as soon as possible. This will become increasingly important as newer, potentially disease-modifying medications are developed. It also gives the patient and family members more time to plan for the progressive decline.”
Galvin said more detailed personality tests are not often used in most office settings because of time and lack of training. “Our results show incorporating a brief, simple inventory of personality traits may help improve the detection of dementia with Lewy bodies,” said Galvin.
IMPORTANT:  Missouri Medicaid requires the Mini Mensa be administered to recipients residing in Long Term Care facilities on a regular basis.
This test is often cited as being inaccurate and not a good basis for accessing the mental abilities of individuals with Lewy Body Dementia.
Why hasn't this possible "test" cited in the article replaced the Mini Mensa? 
My Mom had all of these "signs" and I'm just now learning they were hallmarks of the disease. It brings me to tears. So much time passed, she endured so much and so did we because no one cared enough to want to learn more about Lewy Body Dementia.
Long Term Care facilities aren't there to really provide medical care as is their cited purpose; if they were, there would be more research by Administrators, Head Nurses and especially the Doctors who are "admitted to practice" at the Long Term Care facilities.
My professional life isn't medicine and I don't work every day with individuals in need of my learning and becoming more knowledgeable about ageing. They do. It's their job to know and their job to provide accurate information. 
Without knowing these "personality" traits each aspect of the life they administer and create is cause for escalating the disease due to their failure to treat it accurately.
After all, if Lewy Body Dementia is the second leading type of Dementia, shouldn't there be a movement within the medical community to ensure a more accurate means of assessment is used within Long Term Care facilities?
How many more will waste away in Long Term Care facilities because we continue to shelve them and don't care enough to share information about the most basic and prevalent information concerning the health and welfare of Seniors.
If they and we don't know Lewy Body Dementia, the second most prevalent Dementia can probably be identified and worked with at a much earlier stage, are we providing a quality of life in these United States that measures up to our claims to be the best nation on earth for its residents?