Saturday, May 30, 2015

As The Family Turns

Sitting in the Food Court at our local Mall waiting for the work day to begin. I have a couple of hours until my "shift" so I bring along our computer and look for other work possibilities while also finding time to add to this blog. 

We, meaning my daughter and I, have built a life; a life after tremendous challenges, suffering and heartbreak leaving behind weights to adjust and some to remove as time passes. It's been our individual choice and our mutual choice.

Each morning I drive her to her class -- a long drive from our suburban home into the city-- and come back to work. Then I head out after my work day, most of it standing and trying to secure business for a job that relies on "bringing people through the door", returning for another round trip downtown/suburbia. 

We have one car. Thanks to my youngest son. It's got a lot of miles, needs some frequent repairs but is reliable and I know we're fortunate to have that much needed transportation as it allows us the continued "privilege" of living in an area with less than adequate public transportation.

Yes, we are struggling to maintain that "privilege" of home ownership. We still have a sizeable mortgage and this recent opportunity for daughter has come at high increased cost in her not being able to work, a sizeable reduction in our income level and a huge increase in cost to commute and to stay in the program.

We realize it's only through more sacrifice and continuing seeking and stretching our time and our available resources to change life as we have known it for the past few years.

It's our ticket, we both believe, out of this "rut" we've fallen into since our life changing experiences of surviving after the severe and challenging medical challenges of my husband/her father and my mother/her grandmother.

Their 24/7 care giving needs were more than challenging but the added weight of the Undue Influence, the false reporting of Abuse by me (financial and emotional) and the complications of this reporting within our family unit, with Mom and with her LTC facility, were weights and measures of our ability to survive, our perseverance and our tenacity. 

Lessons my mother taught me. Lessons my daughter is learning. Lessons that if I'd not learned alongside my mother during our earlier life's trials and tribulations, I would possibly have given up, given in and "thrown in the towel" a long time ago. 

But I haven't, I won't and I believe it would be detrimental to follow directives and demands placed on us by some family members who have no vested nor other interest in our well being and our lives. They walk away as they always have -- to their own lives. 

Please don't believe you understand the daily life of a caregiver until you've spent days, weeks and months in complete survival mode; from minute to minute, hour to hour, day to day not knowing what's next, what will happen, what additional decision you must make and who will sit in judgement on you next without any concern for what is really going on in your life, with those you love and with you.

It was a bone of contention with my oldest son who was adamant we should sell our home of many years after my husband's death. Why did we need it? This from a son who told me in the months following his father's death about his greatest decision being purchasing properties and then renting them out.

I found it interesting he saw value in holding other properties but felt we should move out of the home we'd had for decades and the potential for providing for my later years after serving as a home for the two of us.

When I watch my daughter work in the garden she created, when we see the flowers bloom my husband and I worked so long and hard on to cultivate; when the same animals return, build nests and raise young, we are both given renewed strength of self and purpose. But to my son, this means nothing. 

This son needs validation far beyond what I can provide. The road we've walked down together included many challenges and self inflicted damages. 

Life changes and moves forward but without the healing of resolution and taking responsibility, the same errors and omissions, the same challenges and barriers emerge in new and continuing ways.

No, this son has turned his back. He can't face earlier times, earlier decisions he made and actions he took. He walks away as he turns to blame me, to blame us, for any problems or challenges in his life.

We live in the Midwest and he lives on the East Coast. In any given year it was maybe one time we made the drive to visit him but seldom he made the drive to visit us. 

"We" included his aging Grandmother and that meant five people; we couldn't afford air tickets for all, so we drove and that was more than an 11 hour trip. For this son, it was the two of them and then children added every couple of years until there were three. 

I realize the challenges for them; we drove cross country early in our lives to visit grandparents; we made the trip out of love and one year made it twice within a few months because one grandparent became hospitalized. 

When his father was so sick, there was only one time he came to visit and his "help" was to use the riding lawn mower we had to cut the grass and to put up a small piece of wood to repair a hole in our cedar siding.

Out of fairness, this son has chosen a different "work style" that includes working for short periods of time (relative to most other people who work for one company and many who stay employed with that company for at least a few years to several years). This did not provide the same "luxury" of travel and allow him, as it did his brother, to make plans that included "swinging through" our city on his way to work in others.

This son refers to himself as an "entrepreneur" although he doesn't, to my knowledge, make any personal investment, is salaried and isn't dependent, as we were as entrepreneurs, on ensuring we produced income or weren't paid. 

At the end of the week or two, he gets a payroll check, we were dependent on when we received payment from commissions we generated as to when they were received and what was "left over" from paying bills or providing for the business operating expenses.

It's his choice, his way of living and working. I admit it concerns me as the years pass but he and his wife make their own decisions. 

According to him, I'm not "business saavy" although my record proves otherwise. Unfortunately, he's chosen to slander me through false, misleading and deceptive statements and that has widened the gap between us. 

He claims to have been "abused" and shared that claim via email. When I finally questioned this accusation, he said a business problem we had that caused legal action made abused him. Did his life change? Not at all. Did he give up anything, lose anything, did anything lessen for him?  No. He continued to lead a privileged life including attending a prestigious college. 

Our only mistake was not seeing how wealthy and powerful the corporation was we were involved in a contractual agreement with and the multi million dollar strength they had and the legal abilities they had. We challenged Goliath and unlike David, we lost the battle and paid a heavy price.

What did the son lose?  Nothing. But then there are other "twists" on his life he blames me for in particular and his father as well. With his father's death, of course, he minimizes that involvement and maximizes mine.  I'm around to point a finger at while his Dad has become a memory and not as good a target.

There's a lot this son has yet to learn and I do see life offering significant challenges that will either provide a lesson learned or lessons yet to learn.

As the family turns. Interesting. Families are like people in that the true measure of a person comes during the difficult times; anyone can handle good times.

Life moves forward. Finally. Hopefully. Baggage brought along is sometimes heavy and sometimes we lighten the load a bit. 

Wednesday, May 13, 2015

Neglect and Retaliation: Reports and Current Experiences

Neglect and Abuse aren't limited to the Long Term Care Facilities and more importantly, there are NO FEDERAL OR STATE AUTHORITIES currently who have any way to monitor or enforce Individual Rights in other levels of facilities because this level is NOT subsidized by Medicaid or covered by Medicare.

Here's the resource: 

It was a research project funded by a grant and finished/published in 2010. That's five years ago!

Direct quote from the beginning of the publication:

"This study focused on detection, investigation, and resolution of elder abuse and neglect complaints in what are known as residential care facilities (RCFs). 

"These facilities are the most rapidly growing form of senior housing. This growth is a result both of the preferences of the elderly and their families and of public policy aimed at reducing nursing home use.

"RCFs are referred to by a variety of names across the states, including assisted living facilities, personal care homes, domiciliary care homes, adult congregate living facilities, adult care homes, and shelter care homes. 

"The best estimate is that some 50,000 facilities nationwide house a mainly older population in between 900,000 and one million beds. In addition, an unknown number of unlicensed homes house a mixed population of poor older persons and individuals with mental illness. By contrast, there are about 17,000 nursing homes with 1.6 million residents."

Let's do the math of this "best estimate":  50,000 facilities/between 900,000 and one million beds in Residential Care/Assisted Living facilities AND 17,000 nursing homes with 1.6 million residents.

MORE THAN 2 MILLION PEOPLE IN 2010 in some form of "Assisted/Full" Service Living. 2010 was the year Mom was "entrapped" and went into the LTC system and began her almost four years of incidents of neglect, abuse and torment in the name of "Long Term Care".

"Purpose of the Study. The federal government does not regulate RCFs, so this study focused on examining state processes for detecting, investigating, resolving and preventing elder abuse in RCFs. In addition, we sought to identify smart practices that might be replicated in other settings."

Five years ago. The author(s) ... used Federal funds provided by the U.S. Department of Justice..." and prepared a report specifically citing problems, challenges and "smart practices".

What were their findings?

"Vulnerability of Residents. An extremely vulnerable population resides in RCFs, with a mix of advanced age, chronic disease and disability, and social isolation. An estimated 87 percent of residents are not married, while 27 percent have no living family members, and many residents are poor. 

"Many are cognitively impaired, while others have intellectual disabilities or persistent and severe mental illness, and some exhibit challenging behaviors. These characteristics make it difficult for residents to safeguard their own interests. 

"Numerous studies suggest that cognitive impairment, behavioral symptoms, and limitations in activities of daily living (ADLs) increase an elder‟s risk for physical, sexual or psychological abuse. 

"In addition, several studies have found that RCF residents suffer from chronic diseases, and such diseases or conditions are often misdiagnosed or “under-treated.” 

"Such residents may be at risk for abuse because of their level of impairment, but as importantly, they face significant risk of neglect that may lead to premature mortality or increased morbidity."

INTERESTING.  Sounds like what I've been writing about for several months only this comes from a report written in 2010 and written through a Grant to "investigate" Residential Care Facilities, not Long Term Care Facilities.

Listen up, Missouri and many of you other States who've enacted "Ombudsmen" programs as "mediators for Long Term Care Residents" and rely, as stated on the Missouri website and on the Missouri DHSS website:

The published report above clearly states a high percentage of residents of facilities where they have more capabilities cannot communicate or represent their needs adequately yet Missouri publicly states these individuals are expected to contact the Ombudsman office directly. 

Check out the Voyce site for Missouri, it clearly sends the message Seniors can "use the site" to connect -- yet how many in Long Term Care or any Residential Care Facility have access without supervision of a computer, their own private password OR CAN EVEN USE A COMPUTER?

Justification for the inability to provide services promoted to be provided by a federally mandated "watch dog" for Long Term Care Facilities due to "lack of volunteers" does not protect Senior lives.

How about hiring a someone with a degree in Geriatrics and practicing Social Worker and possibly also has an RN degree to make unannounced visits around the area interviewing "at random" residents of all abilities with a set list of questions about the realities of "Long Term Care Living". 

Of course, we'd have to have a process through which these concerns can be made and a significant way to correct all findings. The DHSS can't seem to make it happen as they're limited, or so it seems, to one or two annual visits and then to some "unknown" systems and procedures for following up on any reports they receive.


How about creating a real list of questions about possible Neglect and how about interviewing families of Long Term Care residents -- there are quite a few despite the claims made most Seniors have no one. 

Many of us "take under our wings" others whom we meet in these facilities and could easily provide information about neglect and abuse but have no "legal power" as a "friend".

We all need concerned friends. We all need caring "neighbors" and "visitors" walking the halls of LTC's.

And, when, as we've experienced, an "employee" of an LTC admonishes us for "walking around" or "visiting someone other than whom we came to visit", there oughta be a law, a report form, a means to share this "information" about a facility that apparently doesn't want eyes that see and ears that listen to share neglect, abuse and just plain old poor work ethics to be shared and exposed.

HERE'S AN UPDATE on an earlier blog entry about the discriminatory practice at two earlier holiday meals where friends and family, for a set price, could eat with their family members who were residents of Mom's old LTC facility.

Well, at least this Mother's Day the lady I'd mentioned in another entry who was turned away from the main dining area of Mom's old facility was "accommodated".

That's the word for it -- accommodated. They put her and another resident (a fully mobile, walking, resident) in a side room that was set up with additional tables and chairs. Separate but equal, as they used to say.

Then, I saw a man, in a wheelchair, by himself, no visitors or family for the dining experience come in or be brought in (can't remember) and seated at a table by himself.

I understand. Some might have liked the "separate" dining experience but there was more than enough vacant seats and tables at the "first dining" we experienced for the two ladies yet they were left by themselves and had been told that was where they would eat.

People, including me, had "spoken up" about how she was treated. 

The facility "accommodated" but for those of us who remember other "separate but equal" facilities including water fountains, restrooms, restaurants, etc., this "arrangement" was not right, it wasn't just and it was discriminatory decades after the marches and the protests.

There was room for all, for the few who always come to dinner in this dining room, in this place they call their "home" and where they are the few, the select who haven't lost the ability to communicate, to feed themselves, to "dine" with others and be "social" or not as they choose.

It brings tears to my eyes now to see so well how there is a separation, a segregation. I can understand now how Mom was adamant about NOT eating in the area "on the floor" as that was the place where those who were "less competent" and "less capable" were taken to dine. 

So, she pushed herself. When she still had her walker, before the facility decided it was best "removed", she'd make herself take that long walk down the halls to the elevator and then the walk into the Main Dining Room.

She pushed herself. Rolling her wheelchair when no one would help her. Struggling to get to the place where she, still capable of thinking, talking and being a part of "regular life" to whatever degree remained of her brain being continually assaulted by Lewy Body Dementia, could be as "normal" as possible in this place she told me she never wanted to go.

I didn't want you to go either, Mama. I made a continual place in my life for you and so did my beloved husband. You were a part of our family for almost forty years. We were a part of your life. 

Our lives were intertwined and we were happy, content and lived a life many others envied while a few sought to find "abominable". Sad for those few. We know the love we shared as a multi generational family. We cared about each other and for one another.

Age Discrimination is alive and well.  
Ability Discrimination is alive and well. 
Power & position are still wielded by those who have it.

Happy Mother's Day (again) even though you're not with us for the second year, Mama, you're in our thoughts and you live on in us in all we do because of who you were.

Friday, May 8, 2015

Way To Go, North Carolina: Wake Up Other States

Adult Living for Seniors isn't always by choice. 
Sometimes, it's by necessity or in our case by undue influence to gain financial advantage although as the alleged perpetrator has claimed "you can't prove it". 

We believe it could be proven, we just don't have the financial ability to pursue her. 

We believe the State of Missouri has missed a chance to remove a predator from practicing a trade of befriending and taking advantage of residents in declining health both mental and physical.

So, I continue my belief that awareness, full information and transparency creates safer living environments for us all, especially Seniors who have to live in Long Term Care residences.

Here's my latest "find" while randomly going through State websites trying to find out more about the similarities and differences in provision of safeguards and security for Seniors.

HATS OFF TO NORTH CAROLINA. Click to see the website

The first State website I've seen actively pursuing opening the doors and the windows in Long Term Care for a more accurate evaluation by current and potential residents, families and interested citizens. 


We pay through taxes, through deductions from our payroll, from increased costs in medical care due to "mistakes" on the parts of facilities incurring hospitalization and further medical care. And, through days and nights wondering, worrying when the "next call" will come from our loved one or the facility and another crisis, event or major concern has to be followed up, has to be taken care of.

Residents pay with their lives in "institutions" they call "home". Just as there are families and homes we see as hazardous to a person's health, there are residences getting your support and mine through tax supported programs and donations (NPO's) and other ways.

It's not perfect. The system itself leads to "cover up" and "non disclosure". More on that when I examine in detail those "Star Reports" so heavily relied on by families to "place" themselves or their loved ones into facilities.

You have the power. Speaking up, speaking out and sending emails and texts to your legislators and others about the serious problems within the walls of Long Term Care that are perpetrated and sustained due to the inability to get clear, concise, accurate and timely information to remedy small and large violations and ensure they do not reoccur.

Never before have we had such constant access to direct and timely communication and a media so expansive even the smallest voice among us can be heard.

Here's a sampling of what you can find on the North Carolina website referenced above. 

As above, some of these methods like the Star Program I do not see as adequate and often misleading. Will go into that in another blog entry.

From the North Caroline referenced site:

Adult Care Home Violations and Penalties

While there is room for improvement, room for expansion, it's the first site I've found that provides actual information and doesn't rely on "puff and fluff" writing designed to state and restate how interested they are in "protecting" our Seniors and how there are directives in place, etc etc.

Facts, figures, full disclosure. Historical entries of more than one year. Violations that are specific and not generalized or using referenced numbers or categories that are vague and not comprehendable. These are what we need!

Today, NPR was talking about Millennials. 

They're the current "focus generation" because they're in the marketplace, they're making buying decisions and soon or already have made major contributions and decisions

Everyone was once where they are. Now look where some have been forced to go. Is this what you want for your loved ones? Are you really so sure you know what goes on when you leave for the day, are gone away where you cannot see and do not hear the real world of everyday living for Seniors in Long Term Care?

Transparency and full disclosure will provide that real safety net the DHSS and the Ombudsman cannot provide on a daily basis. 

Once a year, maybe twice, "inspecting" facilities or four hours a week to get to know 200 or more residents of just one facility?

They may mean well but until they realize it's action and not words that create safety, security and peace of mind for all, this Blog will continue to ensure you and I see the reality behind the closed doors of many Long Term Care and other Senior Living facilities.

Tuesday, May 5, 2015

Reference List: Recent Laws Enacted for Older Americans

A list of recent Laws enacted to provide support and protection for Older Americans for your reference

Section 202 Supportive Housing for the Elderly Act 
(Signed into law January 4, 2011)

Elder Justice Act
Link Icon
(Signed into law March 23, 2009 as part of the Patient Protection and Affordable Care Act)

Home and Community Balanced Incentives Act Link Icon
(Signed into law March 23, 2009 as part of the Patient Protection and Affordable Care Act)

Medicare Payment Improvement Act Link Icon
(Signed into law March 23, 2009 as part of the Patient Protection and Affordable Care Act)

Money Follows the Person Demonstration Program Link Icon
(Originally signed into law in 2005 as a part of the Deficit Reduction Act and reauthorized on March 23, 2009 as part of the Patient Protection and Affordable Care Act) 

Nursing Home Transparency and Improvement Act Link Icon
(Signed into law March 23, 2009 as part of the Patient Protection and Affordable Care Act) 

Patient Safety and Abuse Prevention Act Link Icon
(Signed into law March 23, 2009 as part of the Patient Protection and Affordable Care Act)

Physician Payments Sunshine Act 
(Signed into law March 23, 2009 as part of the Patient Protection and Affordable Care Act)

Retooling the Health Care Workforce for an Aging America Act Link Icon
(Key provisions signed into law March 23, 2009 as part of the Patient Protection and Affordable Care Act)

Older Americans Act 
(Originally signed into law in 1965 and reauthorized in 2006)

Saturday, May 2, 2015

And A Child Shall Lead Them

If you are or have been a parent, you know the challenges of everyday family life. 

Working with someone who's changing, has individual needs and wants and many of these may or may not coincide with the point in life or needs of the moment where you are, is a constant and ongoing challenge.

Care giving a Senior loved one has many of the same challenges.

The differences between being a parent to a child and parenting a parent are many as are the similarities.

My first entry on this blog was titled: When The Child Becomes The Mother  It was April, 2013 and our family had changed from "average" to "in crisis" long before that date on a journey we're still trying to understand.

Recently, I read  about Lewy Body Dementia behaviours and attributes and treatments. on the website.. The subject of the entry was medications and LBD, the title of the article: LBD Frequently Asked Questions: When To Consider AntiPsychotic Medications in LBD.

While the LBDA has many good topics and provides valuable information, I find this entry to be less than helpful and even harmful.


(1) Anti psychotics whether "new" or "old" all carry risks. Listen to your TV ads any day for law firms pursuing actions and class action suits against companies who manufacture drugs that have "side effects", many of which can cause severe reactions. 

(2) Skilled Nursing Centers are referred to as "Medical facilities" -- they are far from qualified and very low on the quality level. Ask to see an "examining room" or any equipment for general use should a patient need it. You'll probably find it in a Medical dispensary off premises usually owned by the Long Term Care facility or with whom they have a "preferred" realtionship but not on the premises.

(3)  Check out the quality of the equipment "provided" to the residents. If it's good quality, chances are it comes from private pay insurance or provided by a family member. Residents less fortunate are given equipment that isn't fit to their bodies, their abilties/challenges,(which should be a primary concern to ensure further damage isn't done by equipment like it was to my Mom when they put her in a Gerri chair that had uncovered metal pieces where her leg would slip in and be cut and bruised).

I don't believe we should compare an adult to a child or a Senior's behaviour to a child's behaviour, HOWEVER, I do see similarities in HUMAN RELATIONSHIPS, especially those of adult/child, supervisor/employee, friend/friend.

As with life in general, taking a step back, examining, evaluating and "putting our feet in the moccasins of another and walking in them" are the best directions forging paths of understanding and positive change.

In the four plus years I've been on this journey trying to understand the "system" prevalent in the United States of how we age and how we treat those who are "aging", I see little focus on what "we" are doing and more on what "they" are doing -- meaning TOO LITTLE EXAMINATION of the SYSTEM, the PROCEDURES and the way we INCARCERATE many Seniors RATHER THAN CARE FOR AND ABOUT.

There's medical proof many "symptoms" of Dementia and especially LBD are caused by neurological conditions affecting the brain and the body in general.

HOWEVER,  we may be attributing many behaviors or what is classified as "behavioral symptoms" including aggression, agitation, apathy, depression and anxiety to the Dementia when it's source and cause may be from surroundings and other medical challenges including medications given, neglect on the part of the person or the care givers, UTI's, sores or cuts, bruises or even something as easily corrected as ingrown toenails.

Look. Listen. Learn. Remember . . . you may be next to enter through those doors and sooner than you think.

AND, MOST IMPORTANTLY ... remember Seniors deserve the same high quality concern and attention as Children. Let's follow the same enlightenment path we began walking down when we chose to change parent/childcare for caregiver/Senior.