We Hear Your Silent Cries For Help, Carol

Seventy three today. Your life has taken many turns. 

Your only child, a son, died within hours after birth. 

No family except a cousin who lives halfway across the country.

I took you to the Tatoo Parlor Christmas before last to have a beautiful Monarch butterfly with your son's name and birthdate put on your left arm, not too far from your heart, which has always held him close. 

It was your fondest and greatest wish to do for years. 

I barely had saved enough money since the challenges we faced after going through my husband and Mom's medical, physical and challenging end of life stories.... but using it to give you a piece of happiness was well worth it all.

We met by chance when I moved Mom from one facility to another. 

It was meant to be. 

We grew to know you and found many common bonds .....even our attending the same college. 

I remember all the times we asked you to join us when we brought picnic lunches to the facility to give Mom a change from the food that was far from palatable but you and she had no other choices .

We took you out to dinner -- I remember how much you wanted a steak and how we saved for a long time to give you that "wish" while we shared a far less costly item on the menu.

I took you to Dr appointments and shopping at The Dollar Store.

Like for my Mom, we found ways to "make it happen" even when both daughter and I were using a very old car, gas was a luxury and a quarter was like finding a five dollar bill.

We were struggling, daughter and I, to find a way to keep our home, to find work that paid more than minimum wage, me because of my age and daughter because she left college when I needed help and there was no way to pay the college tuition and costs. 

We attended your concerts with the Meadowlarks... a singing group you were so happy to be a part of. 

We encouraged you as you took piano lessons..a gift of another friend. 

We spent every Holiday with you at family dining events as the only "outside" friends -- up to last Christmas. 

We continued to visit you after Mom passed in January 2014.

The facility cancelled Easter -- they said they didn't have enough people interested. 

We came to visit with you and remembered the times when you wore "ears" and handed out plastic Easter eggs to everyone. 

Now we play music for you to remind you of earlier times and esp Patsy Kline who you loved to listen to.

We came for Mother's Day. You had just thrown up. Interesting.....

They told us this day you had thrown up when we last visited and you consumed a small milk shake.

They knew we were coming and had signed up for the dining room.

Why would you have "just been fed"?

They didn't want to put you into the special chair, the one that's far more costly.....

They didn't want others to see you, Carol.

They close your door, they pull your curtain.

They isolate you. They don't have the courage to show the world what they're capable of doing so they hide it (you) from view.

Yet,we saw two or three others in these very expensive chairs in the dining room being fed by a family member.

So many people go through this facility so much faster than they used to. They come in walking, many of them. Within days now, instead of the weeks it used to take, they're in wheel chairs. Then you don't see them. They're "bedridden".

HOW MUCH DRUG INDUCED PHYSICAL LIMITATION IS GOING ON HERE?

Didn't think of it then but now ..... how coincidental you get "sick" from "overeating" just as we arrive for the Mother's Day Family event we were all going to attend.

You love celebrations. You love people. You were the "belle" of the facility....you knew everyone and everyone knew you.

Now you're alone. Isolated in a room with a woman who is either out for long periods of time --drug induced I'm sure because when she's awake, she wants to "do" things and is constantly calling out for someone, anyone, to come to her room---she needs social contact and she has the capability to want to do things.

Both of you are being silenced. 

You more strenuously than her but she's so "demure" as they used to say, so compliant. 

And the facility?  So uncaring.  

They give her cups with no lids and no straw and so she spills everything and no one comes, no one knows. 

Her call button, like yours, is on the floor, under the bed, disconnected or some way "not usable". 

And she, drugged enough to be "compliant" and "docile" doesn't always realize she's spilled something.

They give you 

Glasses and cups and you can't use your hands.

A very small boxed liquid "Boost" which tastes like chalk (I know because my husband was given this in the LTC he had to go to for rehab after 100 days in the hospital) -- unopened,

They leave the food.  It's not hot/warm when it arrives. 

It looks like excrement from your body.

Green, brown, orangy yellow.  

Foods you wouldn't choose if you could.

I remember the "conversation" from the CNA who criticized me on our last visit .....

 "How could I treat her this way? She cared for my mother."

Imagine the facility has put everyone "on alert" as they've been visited by the DHSS and have compliances to do.

Typical fashion they will appear to "tow the mark" for however long they feel is needed and then rapidly reinstate all the practices harming the residents and hindering anyone from having a "life" beyond what THEY determine is financially feasible for THEM.

How can she and the others who have worked in this facility for a long time not be whistleblowers?

How can they, each day, watch the negligence and abuse -- for a paycheck? 

If that is where we are as a society, where we believe we "have" to work in abusive situations, we're losing more of our freedoms each day.

It's really hard for me to visit. My hands are tied. I see chemical restraint and neglect and yes, abuse and reporting it really does little good. 

Drug companies are being sued for their part in building distribution of the same or similar drugs to what has been prescribed for Carol.

How about Doctors who do this? 

Why are we holding this "profession" above the law?  

What about LTC's who use drugs as a means of "control" to lower "costs" and have less "hassle"?

Who will speak for our Seniors?

Who will care about those whose voices are being taken away, silenced?

I'm coming, my friend. I will put on a face. 
I have no voice. No one seems to be listening.

I know. ...You deserve better. 

Everyone at the facility deserves safety, security, quality care and being free from restraints -- especially drug induced control of mind and body.

READERS:  Please read the entry prior to this one dated
May 26, 2019.

Will Carol Survive Until Her Birthday?

Truth be told, I've not been visiting Carol like I did for many months. It brings back memories of when my mom was in the same facility. The lies. The half truths. The watching Carol die a little more each day not because she's that sick but because what is not being done for her and instead done to her is taking her life an inch at a time.

Reported to DHSS about the overmedication of anti psychotics including possibility some meds caused Carol's hands first to tremor and then a couple of months ago to "freeze" into not clenched fists but "frozen" in claw like shapes without any ability to use her hands.

Facility was given a "slap on the wrist". 

She can't feed herself.

She's "offered food" but often cannot talk.

The food is pureed and looks like something that comes out of you instead of goes into you and imagine the taste is almost as bad.

Carol refuses the food. The LTC sees this as "the end" -- it's been going on for a very long time and the only thing that keeps her alive is the weight she had and that will soon be gone.

She doesn't refuse what we bring to her. She's starving. It's evident to us but others claim it's typical "last stages; end of life". They don't take the time and they don't care. They convinced her to go into Hospice telling her if she doesn't want to go back to the hospital, that was the only decision she could make.

What about the Department of Health and Senior Services?  What about the Elder Abuse Hotline?

They say their hands are tied. A Dr has prescribed the medications and one rep told me if a Dr prescribes medication it's because it's needed.  SUGGEST that person look at the latest Stats for LTC's and Medical Professionals abuse of drugs both personally, professionally and prescriptions.

From a recent AARP article: www.aarp.org/health/drugs-supplements/info-09-2011/doctors-overprescribing-antidepressants-health-discovery.html

"Nearly four of every five prescriptions are written by primary care doctors and specialists untrained in psychiatry who are dispensing powerful drugs that may have either no impact or harmful effects."

How would you like to be "used" when you're no longer a profit center because you need more daily care for toileting etc?  Remember how they convinced Carol -- they knew she didn't want to go to the hospital (and that took away from their bottom line).

It's challenging to find information on the net about this "practice" because older people are "expected" to die and so when they do -- well, that's just what happens. Is it? Or is it more profitable in the short term for the increased costs, less care and then when the bed "vacates" another ability to fill it with someone who needs less care.

The following is from a publication of the California Advocates For Nursing Home Reform:

http://www.canhr.org/publications/newsletters/NetNews/Feature_Article/NN_2014Q3.htm

"In my experience when a patient is certified for hospice, the hospice provider routinely orders rental of an expensive hospital bed and various expensive breathing apparatuses whether the patient needs it or not, and bills accordingly. Once the patient’s hospice category is set, and the reimbursement set accordingly, of course profit goes up if that care can be provided by fewer personnel or in less time, just like in a nursing home and other businesses, and the least able and most vulnerable among us can be treated accordingly."

"A second important reason for long times on hospice for people who are not on the verge of dying is that they are very good business for hospice providers. See, e.g., “Medicare Rules Create a Booming Business in Hospice Care for People Who Aren’t Dying,” Washington Post, Dec. 26, 2013.

"The Hospice Halo Is Not Always Holy

"Hospices, just like nursing homes, sometimes make tragic mistakes. Hospices, like nursing homes, exploit the Medicare payment system, and exploit their own hard working and dedicated nurses, to make money, sometimes at the expense of patient care."

I had a CNA who asked me why I was "treating her that way" when she "took care of my mother" -- she was referring to the staff having to provide more 'hands on" and being "blamed" for the reports generated through the DHSS and Abuse Hot Line.

I did not make the decisions about how many staff were on the floor for each shift and cut back so that there was one CNA to a hallway of double occupancy rooms. The facility would counter it was the "graveyard" shift and residents would be sleeping. Actually, the only way they would be sleeping for many of them would be through a narcotic induced sleep and I'd watched many of them sleeping and in bed morning, afternoon and evening -- falsely believing they were "sick" or "so old" this was just how they "lived". And it was various times, daytime and night, I'd not seen but one CNA for an entire 1/2 floor of over twenty beds.

I'm disgusted when I look at the Form 990 reports; Carol's facility is a Not For Profit. What I've seen are expenses paid for "executives" memberships to Country Clubs and end of year bonuses given staff -- while residents went without.

I've tried to find out why there's not an Ombudsman assigned to this facility but all I hear is they "don't have enough volunteers" -- that's another area worth looking into in your area -- it may use another name so contact your Area Agency on Aging.

When will we understand we are all subject to this mistreatment and to our lives and those of people we love being forever changed when we fail to speak up, to check it out and to cry out for all to hear about our most vulnerable populations subjected to being treated like less than an animal and without the value we give to children.

What are you willing and able to do to stop the abuse of elderly in Long Term Care?

The Choice Is Yours, You Make The Choice

Some words and phrases have lives of their own.

"It's a choice. You make (have ) the choice." 

Two sentences. Very few words. 

A single word, "choice", that changes dramatically when the words "you make" or "you have" precede it.

Simple word "choice" and no real negativity implied .... until you're placed in a life situation where the "circumstances" surrounding and possibly implementing this word can hurt, harm or even destroy life as you know it.

Unbelievably powerful statement especially when "choice" is not between "which choice to make" but "if", "what" and "when" a "choice" is made.

There can be deep and life affecting interpretation based on who you are, where you live, how you live and what you interpret these statements to mean.  

In this case, the words keep resounding in my mind as I move through life and am faced with decisions, many of them until very recently, considered to be not capable of considering let alone having to decide between or among.

Life has changed. The resounding and ringing in my ears applies to today and often interupts my forward movement as it conjers up the harsh and destructive spoken and written words by some for the "choices" we were making and made.

A heavy burden I try to lay down, try to set aside and sometimes succeed. It remains, however, and is taken on sometimes unknowingly and sometimes undesired through words and actions about "choices" then and now.

The person making the statement has known a life of privilege from birth through adulthood.They deserve what they have and work hard to get and keep it.

The person, me, this was said to, also was privileged for several years, but tried to teach the lesson of walking in another's shoes before determining how they should walk. 

I knew personal sacrifice; making decisions when the "choices" were not what was wanted. I had good training. I know I passed that along to my youngest as we walked the path together and made the sacrifices together through the choices we made.

We grow accustomed to privilege. 

We grow accustomed to any move beyond where we've been. 

It's the coming down, let alone the crashing, that few understand.

It's the not seeing that for some, life doesn't  provide opportunities, possibilities and the doors opening without challenges and consequences.

Or, that life interupts, interferes or just simply doesn't move past where we think we want to be, want to go or want to do.

Does this person have major life challenges? Quite a few.

What they've not had is everything or almost everything removed, taken away or needed to provide for those they love and not able to replace or even substitute. 

Major life interruptions; major life changes remove the "choice" from the "change".

Moving up and down the scale of "privilege" isn't always a choice. Sometimes the ascent or descent is more of a spinning than a climb and sometimes the inability to fully control movement isn't within your scope of ability or action.

Sometimes it's life's way of providing situations to learn and then to teach; to experience and to remember and reflect clearer than we could have without that first hand personal involvement.

For the two of us, we move forward ever learning from the past and the present.

The medical challenges, the harm done by others who found fault and the losses daily and cumulative, continue to be turning points in lives we live daily and have turned adversity into positive focuses.

Your life is and will be beyond the boundaries of the daily challenges and inability to see an end or even remember fully where the beginning actually was.

From your unique experiences you will find ways to beneift yourself and others.

You retain what others can not understand -- personal life changing experiences from a vantage point that cannot be bought or sold, cannot be moved into and out of just by getting up, moving away and on with your life. 

All I ask now is what I asked then....do not see my life or other's from your point of view. You have choices with few limitations or at least you have choices.

 I and others who have walked this path know life isn't about choices, it's about how you look at, how you handle life and what you do, as always, for others and for yourself that are the true Privileges & Choices in life.

Stepping Aside, Standing Up, The Waiting Game

Another life's journey walking this time with a friend down the path leading to.......

When should we "let go" and "just let it happen" even if we believe the journey should never had started, was a "push into" and is done with steps not of love but of getting tired of having to do?

DHSS WHERE ARE YOU?  So secretive. So sensitive. Hidden behind closed doors my friend labors through a fight she has no control over; she's given meds, heavy doses of antipsychotic drugs, all with claims "they're needed" and all with the "blessing" and "formal acceptable procedure" of a Dr writing the script allowing daily doses of multiple types. And the DHSS?  One female representative told us "If the Dr prescribed it, it's needed." REALLY?  Wonder how often she's resided in LTC?

WHERE ARE YOU, DEAR READER?  Why isn't there an outcry among the population? Do we really believe Dr's are "perfect" and "can do no harm"?

WHAT CENTURY ARE WE LIVING IN?  Dr's CONTROL medical situations in Long Term Care. They work FOR the facility; they're given the "appointment", they're "selected" by the Facility. So who do you think they please --- the patient, the family? THINK AGAIN.

Outside the walls, the windows and the doors our loved ones wait, watch while they can -- and know......they lose their ability to speak up, or it's made silent.

WHY?  Staffing. It's challenging to hear the calls of someone who NEEDS help. Sleeping or drugged in bed, their bodies lose fluids and solids and you can turn them when you have time and attend to changing them.....when you have time.

OVERWORKED. I hear that a great deal. WE'RE CAUSING CHALLENGES WITH OUR REPORTS.....our caring for and about those they agreed to care for.

COMMODITIES.  Valued for their worth?  If medicated, add that to the billing. Watch to see what's "allowed" and what's "devalued" in level of payment to the facility.

Even Non Profits have to keep their doors open and if this has to be done to one....or more...it is, after all, for the "common good", right?

DOLLARS AND NO SENSE as a measurement of human value 

But these are BUSINESSES.  Not For Profit or For Profit entities.

After all.....there's another "bus" coming along any minute.....Seniors are growing older every day and their numbers.....well, we've seen the Statistics.

It's the biggest opportunity out there and if you can make them another "SILENT MAJORITY".....you have a gold mine that just keeps giving.

HARSH?  UNFAIR?  NOT TRUE?  I wish. You should be doing more than wishing because we're all headed down that road and it's a fearful one.

Think you have enough money to get through it well?  Maybe. There are pitfalls most of us do not see, cannot see and won't see -- and we may not have anyone who really does or cares.

LIFE IS WHAT YOU MAKE IT?  Yes, it is. What will you do today to learn the truth, work for change and protect the most vulnerable of our society -- those in Long Term Care who are past the time of being "profitable" for the Long Term.