Medicaid: Being At The Mercy Of The System

Before the experience with Mom, I looked at receiving Medicaid as a Senior as the last resort but a “safety net” when absolutely necessary. 

Now, I realize once on Medicaid, as a Senior, your life is truly at the mercy of those who administer the program: facilities, State agencies and departments. And, unfortunately, as many who have the services at younger ages will tell you, it’s degrading, dehumanizing and often provides far less than you’re told when you agree to entering the process.

With generations in their 90’s and beyond, 80’s and even 60’s through 70’s who went through financial downturns of decades, wars and confrontations, and even economic times and lack of ability of programs and plans, our society faces continuing challenges maintaining quality of life and independent abilities as most States and the Federal Government state they advocate and support.

The Answer: Effective use of current State laws, rules and regulations AND the powers that be, the regulating authorities, realize the importance of not only advocating and promoting but of regulating through enforcement of specific corrections that mean the most to facilities – loss of income, loss of new residents.

Transparency: an online list of all facilities by State joining together the many State Authorities under one “banner” with EVERY SINGLE REPORT GENERATED available to click through – AND NOT JUST THE SUMMATION OF FINDINGS.

Quick and Clear Reference:  A checklist of complaints by area, number of people/times reported and outcomes.

LET’S LIST STATISTICS CLEARLY AND ACCURATELY AS PART OF THE MANDATE FOR TRANSPARENCY AND OPEN REPORTING.:

‘

Deaths by facility, by month, male/female, age at time of death, number of years spent in that facility; total number of years spent in facilities by type

Number of cases of pneumonia per facility by month; male/female

Number of falls by person and reasons provided for falls in record of facility

Number of cuts, bruises, abrasions or any other skin compromise per month per facility

We keep hearing how falls and infections are rampant in the elderly but we don't hear the details of the sources of these challenges.

Let’s see an accounting by the State Departments of Health, those who oversee the nation’s welfare in long term care facilities in a format and easily accessible with updates at least on a yearly basis if not on a quarterly.

We’re in the computer age. Colllecting data is easier. Mandate facilites report by computer, don’t just say you’ll take paper. If they’re not using computers for their work, how can we believe these businesses are well managed and well run? Computer entries can be tracked far easier than adjustments to “written” reports. Move Forward, DHSS!

CNA's Are The Workhorse of Skilled Nursing Facilities

In Missouri, most of the "training" of Nurses Aides is done "on the job" with some classroom required but more "in the field" at the Long Term Care Facility and under the supervision of the facility.

Aides are the "backbone" of Skilled Nursing Facilities/Nursing Homes. They're responsible for the majority of the extensive physical workload of patient care.

Their jobs are physically, mentally and emotionally challenging and yet they're usually the lowest compensated level of care giving.

Who would want this job? Everyday they face the challenges of answering to everyone and being sent to do jobs no one else wants to do.

Aides operate the Hoyer Lift, they are assigned to feed residents, they clear the rooms of food trays, take residents to the bathroom and wipe them if necessary, clean them up when they have an accident (food or other), give showers/bathe, make beds/change bedding, assist residents from wheelchairs into chairs/beds, wake up and assist residents in getting up in the morning, move wheelchair patients who cannot move themselves to on floor dining and more.

Their training is primarily "in house" with some classroom instruction. They go to facilities that have "partnered" with specific training facilities for Certified Aides. From these ranks facilities often add to their staff. Yet many are not paid for this training or minimally paid while still paying for the "privilege" of learning this "trade".

Who trains these Aides?  The Nurse on duty? Another Nurse's Aide? One who received their "certification"?

As with any other training, the level of ability depends on the accuracy of the training and the ability of the instructor.  And, it depends on the ability of the individual.

Mom had some great CNA's and she had some very poor CNA's.

The challenge as I saw it was the training for use of medical equipment like the HOYER lifts was minimal. There were two kinds, for one the individual had to be capable of standing and of holding on while the unit raised their body from a sitting to a standing position or vice versa.

With Dementia, individuals often "forget" they need to hold on or fear falling and let go.

With Dementia, the introduction of this "new" equipment for which the individual has no previous experience is as frightening as introducing a swing or bicycle to a young child for the first time. Some form of cooperation from the individual is needed to ensure the person doesn't fall -- balance, upper body and or lower body strength.

Usually one person is sent to "move" the resident as the facility believes it's a simple task.
That's not always the case, especially with someone who has varying abilities due to Dementia or even to the use of medications which can affect balance and/or perception.

We took a picture of Mom having a Hoyer lift used and almost falling by slipping down because she could not hold on sufficiently. The CNA tried to use a Gait Belt to control this and that meant Mom was even more "pulled apart" and in more than one direction causing her to have even more challenges.

Facilities should be required to have two person assists with each use of the HOYER equipment whether it's the one where the resident stands or sits.  

Looking back and watching today, we still see safety issues in LTC's and believe the causes for falls is more than a resident's inabilities -- it's due to the lack of adequate caregiving.

Mom lived with us through many medical challenges including operations and a hip "nailing" and an escar on her foot the wound specialist was convinced would mean she'd lose her leg at least to the knee.

Didn't happen.

Took a great deal of patience and endurance on our part; a working together to ensure Dr's orders were followed even when Mom complained and initially rejected procedures but Mom came through these situations without the myriad of falls, injuries and infections.

Why?  We believe it was because we provided a high level of caregiving.

People were amazed at Mom's advanced age when she passed and while she lived. Yes, it was genetic, a good quality of life in her later years but it was also because there was a direct involvement and interest in her as an individual and ensuring a high quality of life.

At the level of residential care Mom had to go to, this just wasn't offered. Mom did receive excellent care from a few, but not for long and not when they weren't there. There are many more like my Mom; placed in facilities where standards are low, turnover is high and outside resourcing of services provides many who simply don't care because tomorrow or in a few days, they'll be somewhere else and it's "just a job".

To those who do care, we applaud you. Your job is difficult, often unrewarding for the most part and unrewarding. 

Thank you to those who are CNA's making a positive difference and truly caring about our Seniors.

Senators Propose Investigation of LTC's "Star Ratings" by CMM -- Long Overdue

Two Senators have recently called for the federal government to investigate Centers for Medicare and Medicaid Services' Five-Star Quality Rating System.

I wrote about the Minimum Data Set, mandated to be used in all Long Term Care Facilities on a regular basis and reports sent to the DHSS and Medicare/Medicaid for its negativity and misapplication.

Want to read what I wrote on December 17, 2014 on the MDS: click here

This system of "Star Ratings" by the US Government CMM has been promoted as being a reliable way of determining the quality of care and safety in Long Term Care Facilities across the US when it is actually a compilation of information whose source varies and whose information is questionable as to accuracy and dependability.

The general public deserves to have websites provided by the Federal and State Governments that are accurate and complete, especially when human lives are involved.

Unfortunately, this Star System can be detrimental to the lives of Seniors and their families with its limited and biased information.

Click here to pull up the page on the web that details what's used/included in this "review".

You actually have to click through to Nursing Home Compare to get information on specific facilities. You can put in your zip code and it will pull up several to compare.

I did and reviewed my Mom's LTC where she lived and died. Ratings were far higher than I would have expected from the actual experiences of Neglect and Abuse reported several times by our family and others.

The Key Word here is "Average" as it is the basis of the report. Let's see if we can find a definition for this word as it applies to the three categories.

For this we need to go into another site. Here you'll find the following on page 6:

"For the above reasons, Five-Star quality ratings on the health inspection domain are based on the relative performance of facilities within a state. This approach helps control for variation among states. Facility ratings are determined using these criteria: • The top 10 percent (lowest 10 percent in terms of health inspection deficiency score) in each state receive a five-star rating. • The middle 70 percent of facilities receive a rating of two, three, or four stars, with an equal number (approximately 23.33 percent) in each rating category. • The bottom 20 percent receive a one-star rating."

IMPORTANT: The information that each State sets its own standards so a 1 star in one State can be a 2 star in another and vice versa. 

Shouldn't a Long Term Care Facility in Georgia have the same basic requirements and therefore comparisons as an LTC in New York State? 

What's not being openly discussed is the broad scope of legislation and the leaving to the States individually to set their own standards and parameters for care giving for our Seniors.

Then, on Page 10  you'll find Table 5 Staffing Points and Rating (updated February 2015) 
 a table of information that's best viewed as it doesn't copy well for insertion into this blog.

What's also upsetting is the "lumping together" of RN, LPN and Nurse's Aides as though they were equally qualified to care for residents.

In Mom's facility, there was only one RN on duty and that was only during the hours of 7 AM to 5 PM Monday through Friday, not on weekends, one or two LPN's per floor depending on the number of residents at the time and usually 2 to four CNA's depending on the total number of residents and not the actual abilities of the residents or needs. All totally in line with the State of Missouri "requirements". 

WHO CHECKS TO ENSURE THE ASSESSMENTS DONE BY THE FACILITIES IS ACCURATE REGARDING THE PHYSICAL AND MENTAL NEEDS OF RESIDENTS?

If the facility administers their own tests, hires their own Doctors, requires (as Mom's did) only their facility's Hospice Care and doesn't allow any other "end of life care", please tell me how much weight we should give to the accuracy and positive intent of a facility?

These valuations were always greatly underestimated and trying to get a facility associated Dr to ensure the real level of personal assistance, mental capacity and capability were notated and recorded was never accomplished in all the time we spent there and all the reports we generated.

Most importantly when you read the report you'll notice it relies on the reports generated by the facility as to the ability level of its residents.

Sadly, those who write the reports often do not tell the truth; they do not adjust for changes and especially for lessening of abilities both mental and physical.

At Mom's facility, as I'm sure is true of many, they relied on Staff "Rounds" that were supposed to be held at the beginning of each new shift to VERBALLY inform the CNA's about the abilities and needs of the resident. 

Can't say I ever really saw a CNA checking a record of a patient. There was a recording area for them to put down what services they provided but the errors had to be extensive as it was not portable but fixed to a wall and totally dependent on the provider to leave the room walk down the hall, pull up the specific resident and record services rendered and observations. 

Imagine this scenerio:  CNA is called to Room 1 for resident who needs to be transferred to commode. CNA takes advantage of time while resident sits to give assistance to another who needs help getting wheelchair out of a corner or some other logistics need; another light goes on and another and the CNA moves from room to room.

So, if the average person can only remember 10% of anything they're taught or specific procedures they've done, how accurate can this "report" be when the CNA finally gets around to recording their actions/activities with each resident?

THAT, SENATOR CASEY AND SENATOR WYDEN, is one of the many reasons why this Star Report is inaccurate and not worthy of the time and cost.

How about a website that provides A VOICE FOR THE PEOPLE?  One where residents and families can record their concerns and their observations?  That would be a better spending of Tax Dollars -- in my opinion.

The general public deserves unbiased information and full disclosure. Some states now provide itemized reporting of ALL violations found and reports made generating visits by the State Departments of Health and Human or Senior Services.

Senators, this is the format that needs to be followed:

TOTAL TRANSPARENCY WHERE HUMAN LIVES ARE INVOLVED.

A federal government website that uses the reports generated by the individual States differing standards and procedures for reporting quality of care IS NOT ACCURATE when it does not include the parameters of each specific State or at least a click through for each State so we can acess directly the parameters used to judge and measure Seniors.

You cannot compare apples to oranges.

A federal government website that relies on individual interpretation and administration of measurements like the MDS, Minimum Data Set, often administered by unqualified and underqualified individuals in settings not conducive to a "controlled study" which this test and others like it should be is not reliable and should not be used to determine the "quality" of care giving in any Long Term Care Facility in any of our fifty States.

I've personally seen the questions given to residents after waking them from a nap, at the dining table, after receiving medications, etc -- all factors never reported or divulged as influencing the outcomes of the MDS-- as mentioned in the above blog entry I wrote on December 17, 2014

The Problems:  

This system uses reports generated by the State DHSS's who each have varying parameters they use to determine the specific categories covered: 

There are only three areas used to determine the Five Star Quality Rating System. 

 Health Inspections done yearly at facilities    Staffing          QM's 
  
How often is there a review of this "system"?  When is it updated? Let me know if you can find the answer -- I'm still looking.

My Comments:  

Reference is made to the three most recent ANNUAL health inspections. What about the inspections generated by families and residents endangerment and negligence?  They wouldn't be in this classification or examination according to the interpretation of this directive.

Three most recent surveys health inspections -- done by the government agency, the DHSS. 

Ever read one?  I have and was appalled to see severe and life threatening events portrayed with moderate and not severe language. Anyone reading this report would "judge it" according to the language as is stated above and a really poor facility could get significantly higher marks.

As someone who is very against the use of the Minimum Data Set, I challenge the Senators to review this tool as it is used on patients with Dementia, especially Lewy Body Dementia. 

According to medical experts on the Lewy Body Dementia Association website, you can't get an accurate "reading" and variances can be extreme from one hour to another as to what a resident will respond with patients who have LBD.

This "tool" shouldn't be used to measure the amount of care giving an individual needs as it is too variable in its results and not effective in the hands of the people who usually administer it at Long Term Care facilities.

The Star System needs to be changed to allow the accurate and total reporting of facilities reports generated each and every time the DHSS makes an inspection for whatever purpose and full transparency should be required. 

Forget giving ratings, give exact information or links to websites mandated for each State to contain exact information gathered from reports made by Long Term Care facilities collected by the DHSS, Medicare and Medicaid.

Let the general public see how many of each category of caregiver is actually working on a  daily basis; let us see all the details (except for the name of the exact resident) for any and all real or perceived violations and the outcomes including all fines and any other actions taken by exact date and amount.

Death Pays Another Visit

The day daughter and I visited Mom's grave, I felt compelled to make the trip. 

Although we could have gone either of the next two days, I felt drawn to drive the more than one hundred miles there and back on that day, not another.

It was a few days past her birth date. 

We always spent that day together and celebrated another year of life, another year of knowing the love of family as a unit of support and caring.

Daughter and I spent more time than we usually did among many headstones finding family members including Aunts and Uncles and Cousins with the same last names. 

We'd walked the cemetery before but not to this extent and so the finds were interesting as we tallied the number of relatives who lived, loved and passed as all have done and will do. I tried to recall Mom's stories of this one and that and of other people with whom she shared her time on this earth.

We'd taken along a lunch and ate it in the car on the half dirt, half gravel road that wraps from the outside to the inside of the graveyard and out again. 

In a way, we were "sharing" another picnic with Mom as we'd done so many times before.

For some cultures, this practice of visiting graves and eating is the same as it is for some religions who come to pray. 

It wasn't planned that way. We're still very much pinching pennies and making lunch is so much less expensive than buying even fast food on a dollar menu.

I've seen a lot of graveyards over the years as I've traveled and attended  various funerals and burials of friends and family. 

This one has been the most unique, peaceful and very memorable to me, possibly because it offers connectivity to my own family, to those who came before me. 

It gives light and hope for my journey knowing they had challenges and struggles, hopes and dreams, some that changed their lives forever while others may have been like a whisp of smoke, here for the moment and then vanishing into thin air.

There are no signs along the main road to guide you to the final resting place of members of the community. 

No Church sits nearby, no gate provides entry. 

It's as open and accessible and free standing as it was when the first burial began sometime in the 1840's or so. 

No neatly laid out plots although there are some lines and symmetry there is not the same "planning" but rather burials in family plots as they occurred, young children alongside adults, all whose lives are marked by dates on stone.

In the newer areas there's a linear positioning of the graves but there's still some variance.

The old tombstones can hardly be read; they're small and most are white. 

So open. So natural. Surrounded by the farming community and small towns nearby. Oh, there are other burial areas and some say this was the burial place for those who weren't "good members" of specific churches or who maybe didn't have the funds -- at least in the beginning.

Now, I think members of families choose this place because of the peace, the natural beauty and the freedom it represents and probably because it's a simpler place.

Monuments, yes, but very average and no mausoleums, no crypts, no definition of wealth on this earth by today's standards. 

Death paid a visit to our family on the same day we visited Mom's grave site. Was that why I felt drawn? 

Was I needing to experience this peace I felt when the last male member of my husband's family passed through this life?

The message came by text from my son who was travelling outside the country on business.

They passed in the order they were born -- oldest, middle and youngest.

One child remains, my sister-in-law. I had no brothers and sisters but imagine watching those in your own generation, with whom you were raised, pass, is a major life change.

I've written before about "moving up" in the line of chairs as relatives pass through this life. 

Losing a sibling, I would imagine, is like moving up and over and realizing there are no more seats left to occupy after all parents, brothers and sisters have left this life.

Without siblings, I reached the head of the line with the death of my parents. My father passed my first year of college and my Mom last year. 

Drawn to visit, to pause and to remember the good that we do for and with others is the most positive part of our continuing lives and memories that remain when we have departed.

Miss you Mom. And, dear brother-in-law, have great memories of times together and the blessings knowing you brought into our lives. Your gifts were many, your challenges as well, but you lived and were a part of life and love in our family, Downs Syndrome did not define you or our family.

A Magic Slate

Children of all ages and for decades have loved the Magic Slatetm

Basically, the Magic Slatetm gave a child the ability with a special "stylus" to write or draw and then to lift the special thin sheet covering the sturdy black "board" beneath and erase what had been written and write something else.

These creations of mind and spirit were not meant to be kept but they were a way to offer many options and hours of entertainment.

I have another memory of a Magic Slatetm.

While my husband was hospitalized and it was our Anniversary, I couldn't get to a card store and the Hospital Gift Shop had a very limited selection of cards, almost all were Get Well, Congratulations on Your New Baby and a few Happy Birthday -- but no Happy Anniversary. 

No blank cards, either. And, by then our financial resources were very limited when every dollar, every dime, actually, was a major expenditure.

When I spotted a Magic Slatetm in the Hospital Gift Shop, possibly put there for children visiting or spending unwanted time inside the hospital doors, I saw a way to remind my husband of better days and times, especially the day that started our journey together as man and wife.

I wrote the date of our wedding and the date of our current anniversary with the message: to have and to hold, for better or for worse, in sickness and in health, to love and to cherish. 

There was no mention of those fatal words, "til death do us part". I was hopeful and positive. We had no idea we'd just started our last journey in life together. 

It was a "bump in the road"; a medical challenge, major as it was, but one we'd get through and get over.

All we needed was time and one another.

Or so we thought.

At the time, we were still in the "beginning" days of his battle with so many complications.

Adrenal hemorrhage, pulmonary embolism, surgery that fell apart a couple of times, bleeding problems, a gallstone that came out of his ilium into one of his three or four colostomy bags necessitated by the constant breakdown of skin and from an incision that did not heal.

And so much more.

Then, there's the "magic" slate used in Long Term Care/Skilled Nursing Facilities:

CALENDARS, MENUS, ACTIVITY LISTS.

States and Federal Regulations require guidelines for food and daily activities but many facilities use the disclaimer "may change" or similar words. 

Some of the "food" served to my Mom looked more like the food served to pigs and other animals. Often overcooked, seldom appetizing and always lacking in eye appeal.

Ever watch the TV reruns of MASH?  Remember the food line and the jokes and comments?

It's no joke to get food served in this way to our elderly population.

Recent TV and Internet articles have appeared on the need for "high quality" food to assist with brain development and even sustainability without medical complications.

A "new" Alzheimer's ad featuring a prominent Hollywood personality talks about the benefits of good, fresh food to maintain good health for this form of Dementia as good food sustains body development and healthy functioning.

Mom's facility "puts on the Ritz" as the old saying goes  when there is a possibility family members or friends will "dine" on Holidays or Special Occasions.  

Prime Rib was the featured dish at a recent celebration of Mother's Day. And, at least this time, my "complaints" were heard (probably because I voiced them to other family attendees on previous occassions who also took their concerns as I did mine to the Administration) and "regular residents" who did not have "paying family in attendance" were admitted to the dining room and not excluded as had happened so many times before. 

Many times I've seen the menu feature peanut butter and jelly, hot dogs and soups with little protein provided. Nice pieces of chicken, pork or beef are few and far between as are dishes incorporting these food basics or other proteins Seniors of extensive advanced age can easily digest.

Of course, there's a charge for attending these special occassions, and part of that charge offsets the food cost for residents but the food offered is of a higher quality and there's always a few more "extras" appearing in the cafeteria (the one that's only open for an hour a day for dinner from 4PM - 5 PM) like more fruit both canned and fresh varieties.

Activities?  Recently we've seen a few more based on the "floor" where residents spend most of their time but seldom do we see a resident who's taken outside in good weather and given the opportunity to "play" a "lawn game" or even have a checker board or table set up and gathering residents around to "play" and spend positive time together.

Since almost everyone becomes "wheel chair bound" within six months of entering the facility OR have the benefit of a motorized riding cart, it is a challenge to create experiences BUT this is their responsibility, their focus, their profession.

Perhaps if there was a higher staff to patient ratio?

TIME AND MONEY.  Interesting how a family of four can live in a home and pay far less for their mortgage, utilities, visits to the Doctor/Dentist, have some recreation and activities as well as maintain a car for far less than the average cost of residing in a lower cost Long Term Care Facility/Nursing Home in the State of Missouri with the average cost of $6,000 per year.  

That's $72,000 for basic care -- additional items can be and are added. I've yet to find a real average cost of living in a Long Term Care/Nursing Home Facility based on actual costs submitted to Medicare/Medicaid or Insurance Companies.

Why aren't we as a society asking for more transparency and more published costs? 

With about half the residential population on Medicare and Medicaid, it's taxes and other funds, including donations and fund raising, providing for WHAT EXACTLY?

We are encouraged to consider "Long Term Care Insurance" but these products are based on the current and projected annual costs along with the projected length of stay in a facility. That means we'll pay higher premiums when facilities incur higher costs NO MATTER if the cause is one they've created due to negligence or even abuse.

We need to wake up as a society. We need to realize when we don't ask questions, when we don't mandate transparency and open information from the industry of Senior Caregiving from residential facilities, we're placing a high cost on today's care and future care.

QUESTION:  Where do you think you'll be living when the need comes for constant care giving? 

Are you willing to exist day to day with the problems and challenges cited in this blog?

Reporting Neglect or Abuse

Standards in Long Term Care Facilities. What are they? Who makes them? Who administers them and most of all, who do you go to if you suspect neglect and/or abuse?

Where to research Long Term Care requirements, standards, systems and procedures, some suggestions:

Federal Regulations
State Regulations
Health Codes -- Federal, State, Local
Building and Maintenance Codes -- Local 
Professional Accreditation Agencies for medical and service providers of Seniors

What is neglect? How far should you let a situation go before you take action outside of a facility? Where should you go?

Neglect is a failure to provide a service or ensure the safety and well being of an individual that falls outside of or below established standards or affects the individual's personal level of service expectations and may endanger their health or well being -- my definition gathered from various laws and writings on the subject.

The challenge for all of us is raising the bar on these standards as some are so vague or so low as to allow neglect and abuse to not only happen but to escalate and cause increasing incidents of accidents and even death.

What is abuse? What's the difference between neglect and abuse? 

Abuse is legally defined as well as socially defined. It involves taking advantage of another human being for personal or other benefit.

Abuse is usually covered by Federal and State Statues. 

Unfortunately, the Statutes are also general, broad and leave a great deal open to interpretation.

Sadly, it takes money and time to pursue litigation and residents of Long Term Care generally have neither.

Who can report neglect or abuse?  ANYONE.

Where can you report neglect or abuse?  There are not for profit agencies and government agencies. 

The effectiveness of each one depends on the individuals administering agencies, departments and even those who are assigned to a "case" or to follow up on a request or concern.

Can you "see" neglect and abuse?  SOMETIMES it's right in front of your eyes or you see something you believe might be abuse or neglect. SOMETIMES it's hidden in actions and words that appear to be "helpful" but are actually demeaning, demoralizing and destructive to the individual. 

Look carefully, listen closely and remember, above all, these are adult human beings who may have challenges physically, emotionally or mentally but still have feelings and retain individual rights to respect, dignity and consideration.

Neglect is often due to poor or lack of training and information, lack of time or amount of staff, burned out or uncaring individuals or a facility that does not effectively monitor, evaluate and completely inform staff through access to accurate and current information on physical, emotional and mental conditions of residents. 

Another cause is based on finances -- either the need or desire to "save money" spent on care for residents to increase the bottom line or to stay in business -- both cause more problems for society.

Abuse is continual disregard for the individual and actions, words or deeds that cause the perpetrator to supercede the individual rights of the person for their own wants and needs.

What can we do?  Share our concerns publicly.  

We're concerned about who comes into our home to do repairs, where the best buys for travel and even for household cleaning items are located but we do not establish a rating system, a reference point for Long Term Care Facilties.

An unbiased, open forum type gathering of information where real people voice concerns and concerns are grouped into categories for easy reference. Anyone want to start one?

I do not see the "Star Rating System" now used by the Government as valid, valuable or even useful as it relies on information gathered from State Inspections. 

Society has a basis of needing these institutions to continue to provide care, stay open because closing them would add costs of relocation and alerting the general public to the real challenges inside these closed doors but we don't get real, accurate and measureable information.

What are you willing to do to ensure the safety and well being of the men and women who rely on us, you and me, to protect and defend them as they did as parents, citizens and serving in Wars for our well being and safety.

What will you do today for those in need and possibly for your future self?

Perception versus Reality

Did my eyes deceive me?  Was Mom receiving good quality medical care in her facility?

What exactly is "good quality" medical care?  

What are the standards, who creates them, who oversees them and who enforces the standards?

Standards are set by individual States. They must adhere to Federal Standards and Regulations. These are broad and open to interpretation and if you read them, you'll see what I mean.

Why are they so broad?  Good question.  Could it be money for the programs flows (some would say trickles) down from the Federal Level to the States and as it moves through channels there's a "loss" due to Administrative and other costs generated through this passage.

How many people are employed within the Senior Services Sector administering programs through Federal and State departments?

How many of these actually have any contact directly with the people they are supposed to be "serving"?

What are their job requirements for their positions?
Usually minimal. Some not requiring a college degree much less one in a specialized area.

What authority do any of them have directly to take or cause action to be made when violations are suspected?
Very little. READ YOUR STATE'S STATUTES and their Rules and Regulations for the actual content. 

Look closely and you'll see a very wide berth of "interpretation" is given and when violations are found -- well, try to find out what the consequences are. If you can find this "hidden" information, let me know -- I'm still looking.

THE DHSS IS THE BOTTOM LINE.  That's each State's Department of Health and (according to where you are) Social Services or Senior Services.

In Missouri, there are one/two mandated yearly "inspections". They're supposed to be "unknown" but it's guaranteed someone at the facility is usually aware of the upcoming "visit" and many coincide with the anniversary of their yearly recertification so within a month a facility is aware of this visit.

What about the general public, you and me?  Do we receive any notice of this visit so that we can meet with a representative and voice our concerns?

NO.  Only once at three facilities have I ever seen a posting of the DHSS being "on site" and available for friends and family of residents and even the general public to meet with them.

WHY NOT?  Are these "inspections" similar to the health inspections at many restaurants where it's "in and out" and "who you know" that gets a rating?

WHAT ARE THE RULES? THE REGULATIONS? What are the questions asked, the specific details of the requirements in the areas the DHSS investigates?

We can't see clearly because information is not transparent and readily available.  Why not?  Well, if we truly saw and understood the conditions that are tolerated, overlooked and set aside in Long Term Care Facilities due most probably out of a fear that closing one means fewer places for those who need them, we would be picketing in the streets.

ALAS, we continue to "park" our parents and grandparents, aunts and uncles and tell them "we'll see you again soon" and "have a nice day".  

What if they don't? 

Who really cares enough to do something -- night or day, weekday or weeknight? 

In Missouri, and possibly your state, no one. 

Perception -- seeing their world through rose colored glasses-- the way you want it to be.

Reality -- clear lenses magnifying the view to show the reality of neglect that grows in many cases to be abuse; unrecognized and untended because there isn't enough vigilance and transparency to ensure safety and well being. 

Seniors Suffer Isolation In Many Long Term Care Facilities

Where would you be without your cell phone? Who would you be without the ability to communicate with whomever you chose at whatever time you wanted?

How would you know what was going on in the world without the ability to click and search on a TV for the news, weather, entertainment and general information on daily life and living?

Magazines. Newspapers. Computers.

GONE.  REMOVED. LIMITED. 
NO ACCESS. NO PROVISION.
PRE SELECTED VIEWING TIMES & SUBJECTS.

What would your life be like, what would your world be like without the freedom to access information?

It would be like living in many long term care facilities.

Do you really believe everyone in Long Term Care Facilities are "so far gone" they have no ability to think, to reason, to care?  THINK AGAIN.

Yes. Residents can have a TV in the room. Provided they can afford it or it's allowed as part of their "property allowance" under the rules of Medicaid, if they're recipients; usually a maximum of $999 in cash and assets.

Maybe there's a "common area", possibly more than one, where a TV is placed, usually on the wall. 

Who controls the TV?  The Staff on duty, of course.

What's on?  Often it's whatever someone thinks they'd personally like to watch and sometimes not appropriate for individuals with mental challenges. 

No one talks about "screening" TV programs in facilities and so programs that can often depress or even frighten minds that no longer can sort through reality and "make believe" are "entertained" with murder and gore. 

Some facilities "park" residents in front of a TV much like parents parking children -- as a "sitter", something to do, a way to relieve the need to watch, care for and find something constructive or stimulating for the mind or body.

ISOLATION COMES IN MANY FORMS.  In Mom's previous facility, there are books on a shelf in the "living room" just off the main entrance to the facility. It looks good. As it's meant to do. I've only seen one woman reading books in all the time we've visited. 

Magazines? We've started taking some to a resident but haven't seen any and certainly not on the residential floors in any "gathering place" for residents.

Inside the lower level Activities Room there are some Videos and DVD's. Not on the floors where residents live and where they would have their TV's/entertainment centers.

Locating the Activity Room "in the basement" of the facility -- where there's also the laundry, the very small "gift shop" for residents and some facility offices -- is not convenient to the majority of residents who are physically incapable of making their way to the location. Then, too, it's closed "after hours" and so residents must plan to visit to pick up a movie; a major feat for those with physical and/or mental limitations.

Interesting Point to Consider:  Walking around the facility when we were trying to find a better place for Mom to live, we were "impressed" by these "features".  

We didn't fully analyze or consider the limitations but accepted the claims made and what we saw as being "inclusions" when they were really exclusions for many in the aging population.

Physical challenges and growing medical problems isolate residents and so do actions on the part of facilities to limit provisions of services and availability of choices.

You may not have the choices you believe you'll have when you grow into the very late, later years of life so many are achieving.  

Are you ready to give in and give up as they learn to do?

Or, will you begin now to raise your voice, open your eyes and see more clearly how we continue to accept, tolerate and even propagate these conditions by not recognizing, actively working to change and ensuring full transparency within Long Term Care Facilities nationwide.

Senior Workforce: A Valuable Asset for Society

Age equates to incapacitation and incapability in many minds.

In fact, it's a News Story when someone who's in their 80's or 90's appears to be physically fit and capable and/or mentally fit and capable. 

This morning a young man in his mid 20's was featured on a news story because he'd had a stroke. Interesting because society generally doesn't see physical challenges as belonging in that age sector.

Actually, if you do a little research, you'll find there are many serious diseases that can and do affect individuals at very young ages including cancer, heart disease, liver and kidney ailments, Multiple Sclerosis, Lupus and others.

The reality is health issues can strike any age, any time in life.

The picture painted of growing old is loss and incapacity. 

The challenge is why, where and when in the "aging cycle" (which we all grow through from birth onwards) society begins to paint this picture and with what amount of emphasis society puts on those specific challenges.

Then, there's the Language Factor.  

In a rapidly changing world we've also reinvented or redesigned language. 

Terms that were once limited to a Doctoral Thesis on Business and Economics are becoming common everyday terms used in all types of businesses.

Those who are moving ahead on the ladder of time past the forty and even the fifty something mark are running as fast as the twenty somethings to assimilate the language and apply it correctly.  


Unlearning, relearning and erasing non applicable, non "now" phrases and expressions along with assimilating as quickly as possible the new professional acronyms and explanations.

So why don't companies value the input of the older generation?  Why do they often see 54 or 64 as a "cut off"?

Do they fear their ability to analyze and discern? 

Millennials I've met rate high on the scale of using this same level of consideration. Just ask them where they want to work and where they don't, you'll be surprised how many opt out of the large corporate sector seeing it as demoralizing and demeaning of humanity in general. 

Shouldn't be news to anyone. Read the websites and see how corporations work to generate a picture of consideration, compassion and concern. Some deserve it while others are simply giving "lip service" to attract the employees they want.

Are Seniors only prospects as consumers for hearing aids and walking aids?  Or maybe Term Life Insurance?

Time to look around and see the realities. 

Seniors are concerned and rightfully so about their income lasting through a lifetime that may stretch into the 80's and 90's but if we value their contributions and keep them gainfully employed those worries would not be so great for the individual or society.

There are positions they could do including work from home.
It can be a  lack of tools and abilities due to not being considered "teachable" or "worth the investment" -- as I see it -- that holds them back and keeps them out.

The age groups of 18-25 and those of 55+ are truly in the same employment "boat" -- the younger ones are trying to board the vessel and the older ones are trying to stay onboard.

Seniors can be very dedicated, could work hours others don't want (due to their internal clocks waking them earlier and earlier --see studies on this fact) and have a sense of dedication to a job not seen in younger generations who are looking for the next, the better, the more important position.

What a waste. Believing the years past 60 are just for retirement.

Or, believing the value of an older woman is to be a babysitter for the grandchildren and an older man to be someone who shows the grandchildren how to "do things".

Maybe for generations past where skillsets were not as varied and lives of women weren't in the workplace. 

These were the continuations of a lifestyle where women were in the home and men in the workplace -- many in jobs involving using their hands and creating or repairing.

Oh, and of course, Volunteering and Charity work are acceptable but not necessarily the paid positions in organizations.

We've passed legislation extending tolerance legally in many areas including most recently marriage. 

Time to work on Ageism and remove it from the list of "ism's".

The value of a person doesn't being or end according to a calendar. 

IF we value human life, we value all ages and we respect individual rights.

So Sorry For Your Loss

Later today, I'll attend a celebration of life, a retirement party for a friend I made along the way after my husband's passing.

She, too, experienced this loss. Younger and without the secondary care giving for a parent, I saw her continue her busy life and move forward knowing the piece that was missing was being a wife as well as a mother athough she still had a son living at home as I had a daughter.

How long has it been since we've sat and talked like we did before she joined the "widow's club"?  

As she started her journey, that solo time of working through life as it is becoming while staying the same through so many changes and adjustments, we moved apart.

Time passes differently now. Measured by other ways and means. 

Trying to remember one of the last times I saw her. We've emailed a few times but haven't "come together" -- ships passing in the night, as the old saying goes.

Daughter and I went to the funeral. Funerals become more prominent in your memory when you have them close in your life even when they're not of your own family members.

We went to the cemetery. I was a little reluctant to go. It was the same cemetery where my husband was buried. 

Memories of that day, of the procession from the hearse to his final resting place. 

I'd chosen men from among his friends and people who walked with him in life: our two sons to represent our family and his continuation, his sister's youngest son to represent the family of his beginnings.

One man who went to college with him (and me) and we'd remet in a local service organization many years later. 

I'd asked a much older man we'd known through our Church and who my husband worked alongside. 

Sadly, he passed within a day or two of my husband -- unexpected but understandable as he'd lost his wife, whom we also knew, just a few months before. 

He was to be an honorary pall bearer because of his age -- in his mid nineties. I'm sure he was there in spirit.

As a second honorary pall bearer, I'd chosen a neighbor who moved into their house just months before we moved into ours and ironically his birthday was the same month and day as my husband's. 

I remember going out to dinner with him and his wife (something we did very seldom) to celebrate their mutual birthday and to ask him to be our pediatrician for the daughter we were expecting -- our late in life blessing.

One was another friend from high school -- we'd become Godparents for their youngest son. And one was a friend he'd made in high school and kept through many moves around the country both on his part and on ours.

I remember being concerned about the last man because he'd just mentioned during the time we were together he'd had recent heart problems. I walked close to him at the cemetery and asked the funeral director to please walk nearby for help if it was needed. 

Yes, many of those carrying my husband were close in age; some had health issues; he had seemed to be the healthiest of the group, actually.

I remember stopping by to visit my husband's grave so many times in the beginning. Then, I couldn't bear to visit because there was no headstone, no marker, no identity. I visit more infrequently now. 

There are changes that must be made so we both can truly rest in peace. 

Death can do more than take someone; it can cause others to act in ways that are less than honorable.

I remember going back and watching as the site went from being a "new grave" to one that began to look the same as all the rest with grass growing, leaves blowing in the wind around the headstones, snow on the ground and the flowers, real and artificial, left to mark visits of those who loved and were loved.

We bury our dead but not our memories.

Death takes a mighty toll. Even when you believe you're in control, thinking and acting reasonably and responsibly, there is a form of  "shock and awe" that surrounds you and envelopes your entire being.

Death changes so many things. Plans of people, their hopes and dreams and their wants. 

So sorry for your loss is heard so many times in the beginning and then fades away.

We who remain are within a different time and place and we learn to adjust, to see the beauty again and to live the life we have looking forward while continuing to look back.