Peace of Mind: Stop Ongoing Abusive Behaviour

It’s almost December. January and another new year with two anniversaries of death will soon return; my husband’s on Jan 5 and my mother’s on Jan 10, on the third anniversary of my husband’s burial.

 
You don’t forget or set aside these times, these dates, when the people who passed are intricate and daily parts of your life who you loved, cared for and about.  

 
Visiting Mom’s gravesite is a little difficult but I know other relatives visit when they go to see their own loved ones. We’ve found remnants of flowers, a potted Pansy (for remembrance), on Mom’s grave when we visited several weeks ago. It’s an hour’s drive to the site and a gravel road, not great travelling in this cold and uncertain Winter weather.
 
Visiting my husband’s grave is far more difficult even though he’s buried much closer. Although I’m still comforted by surrounding gravestones with memorable sayings that gave me solace when we looked for a different gravesite for him, for me and for our daughter and her future husband, it’s disturbing.
 
I can’t go as frequently as I’d like because I won’t be buried with him. My oldest son has made that impossible. I will not allow myself or my daughter, and she is of the same opinion, to be controlled and manipulated by him or by the cemetery who calls our situation “a family matter” and refuses to stop the abuse we’re enduring.
 
We won’t continue to be abused now and we won’t be afraid of a future where my oldest son or his heir(s) might refuse or make the whole process of burial and saying goodbye full of hostility and regrets.
 
When I agreed to inter my husband’s body in a cemetery different from the one we had planned, actually just across the street, it was openly discussed within the presence of a representative of the Cemetery

• (1) we had available burial space, free and clear, titled to me, within the other cemetery
• (2) both sons had shown through their reactions and our talking they would prefer not to have their father buried in that cemetery due to its lack of care and maintenance
• (3) I was not able at the time to cover the amount required to inter my husband but would take over payments
• (4) I negotiated the lowest possible payments over the longest span of time believing as times passed we’d both (daughter and I) get jobs and be able to make minimal payments,
• (5) daughter suggested burial with us and her taking responsibility for 1/2 of the cost and myself 1/4 and we would purchase 2 graves with possibility of four internments, 2 in each, and  
• (6) it was agreed by all I would be on the contractual agreement

My oldest son was given a copy of the contract on the first day we visited the “new” cemetery – the day before we actually made the decision and the commitment to inter my husband. It was a significant additional expense and I was basically asking both my sons for help with burial assistance due to the debilitating expenses of both my husbands long term medical challenges and the costs incurred with my Mom’s growing care needs and our having used all resources we’d accumulated.



On the second day, when we decided as a family to have the burial at the “new” cemetery, I recall asking my oldest son when he went outside the conference room “to check on the contract’s being ready” if I should go with him and his telling me it wasn’t necessary as he was just checking. Then, when he came back, asking him if there was anything I should do and his answer that nothing was needed at that time and he’d signed the contract. I asked if they needed me to sign and he said it wasn’t necessary.
 
He lied. Plain and simple. Nothing new. Same problems we experienced when he was younger; same problems we experienced in our relationship with him and also with his wife. You don’t think straight when you’re mourning; when challenges are coming right and left as life throws curve ball after curve ball.
 
I cannot chose to live with the emotional abuse his ownership of the gravesite provides both me and my daughter. We don’t know which of us might need that site first, daughter or myself; God alone knows.



The law provides no rights to our daughter.. Oldest son and his heirs hold all the rights of internment and monument erection as everything currently stands.


He knew it. He received a copy of the contract and I did not. Again, over a year of medical caregiving and emotional distress with husband’s more than 100 days hospitalized almost all in intensive care/critical intensive care and the ongoing challenges faced by the woman who abused Mom – neither of us were thinking, considering or believing this son, this brother, would abuse us – again.
 
The Cemetery is owned by the same religious denomination who turned their backs on the abusive situation caused by one of their members; who told us we had to forgive the woman who abused Mom and our family.



What to do? How to regain my rights my oldest son took away and this religious denomination turns their back on remedying? Walk away? Be buried elsewhere? Cremated? The choice is not just for me; the choice also involves my daughter.

 
We’re deciding.  We’re focused on ending the abuse we’ve endured for almost four years. If we decide to move my husband, the cost will be extensive and there are legal procedures with high costs.

On our forty second anniversary, my husband lay in a hospital bed in critical intensive care. I couldn’t find a card in the hospital gift shop. I saw a child’s “Magic Slate” and wrote a special message I placed it where he could see it:  “Happy 42^nd, Darling!  In Sickness and in Health, To Love and To Cherish”.

 
Now, our oldest son, violates our vows as he changes the words: “Let no man put asunder” the joining together of husband and wife, of my husband and myself, and instead makes even more meaningful the words, “Til Death Do Us Part” as it appears I will be forced to do by my oldest son.

A Double Edged Sword: Gericare Chairs & Facility Accidents

This is an entry I started in November, 2014. 

Sometimes I move on to write other topics. Sometimes the topic is too "recent" to post; too hard to share at the time.

November 19, 2014

Just a couple of weeks ago leaves were changing and dropping on the ground. Some dried and were soon to be removed with rakes and bags. Others were still clinging with all their remaining strength to stay on the tree as long as possible, especially the Oaks.


Many of our aging are Oaks; standing strong against the challenges life presents, surviving, providing. 

They moved forward believing what they’re told about the “Golden Years” that seemed so far ahead that when they arrived, they still thought those years were far into the future.

And when their time was near, when their days were far less than before, how are they seen, how are they treated, how are they honored for what they have provided, given and endured?

Now, outside it's unseasonable, unexpected cold, snow and ice -- weather reflecting similarities between nature and changes in life for many of our aging population -- sudden, at levels not experienced before and with side effects not expected. 

Like the lives of our aging population and those with medical conditions that do not necessarily improve or “get better”, a bitter time of suffering, enduring and coping are everyday challenges for many who are “cared for” at levels we wouldn’t approve of for children or animals.

Gerichair -- interesting word, Gerichair, "geri" being short for Geriatric meaning "of or related to old people"  "especially for their care" according to an internet search.

A special chair used for many purposes in hospitals and medical facilities. It can be used during dialysis, blood collection and respiratory and cardiac care as well as in Long Term Care Facilities.

In general, medical facilities like hospitals and out patient centers, individuals would scream if they had to endure equipment that caused physical harm to their bodies. 

In Skilled Nursing Centers they scream, too, but who’s listening?

People in SNC's often must be moved, lifted, placed in these chairs. Use of a special lift, a Hoyer can be involved. 

In SNC's people often spend hours in these chairs with little or no adjustment (although this is medically incorrect) or only simple adjustments to change the angle of recline and not the positioning or adjustment of the body leading to sores, abrasions and other medical conditions.

It's a positive asset for eldercare when used correctly. It is a negative and an endangerment when used incorrectly. 

Unfortunately, few who place residents, oversee residents or tend to residents in Gerichairs check to make certain there are no rough edges or places that can cut, bruise or harm the elderly. Few facilities ensure their attendants and especially their RN's and LPN's are required to regularly check and notate their observations regarding the use of these "medical devices".

It’s up to the “Nursing Staff” and Administrators to determine when and if adjustments are to be made, on what basis and when. 

A few "caring" CNA's will attempt to provide caring service but they're always mindful of being found at fault for doing "more" or "less" than "directed" and so many provide services strictly as directed with no variance even when it's in the best interest of the resident.

What are the Mandated Requirements for monitoring or recording when any changes in positioning, checking with communicable individuals for their wants/needs, overseeing individuals who cannot communicate and providing caring adjustments to clothing and to the equipment to ensure comfort and physical protection?

NOTE: It's now January, 2017 and I still haven't been able to find the answer to the above question. If anyone has, would appreciate the reference taken by copying from the website so we can share with the hundreds of people now regularly reading this blog.

Are there any? Who's responsible for making them -- the individual facility, the Doctor assigned to the case, the resident RN, the Department of Health and Senior Services (no, don't think so, all they do is "uphold" what's written, they don't get involved (strange, right?) in making the guidelines/laws -- WHO IS RESPONSIBLE?


Guidelines and suggestions are common in the Long Term Care industry but generally both Medicare and Medicaid do not oversee or ensure Residents are provided with any specific care. 

IT'S UP TO THE RESIDENT AND TO THE RESIDENT'S ADVOCATES TO ENSURE SAFETY AND WELL BEING. 

In my opinion, too many residents are alone, without family or friends able to oversee and ensure their safety and well being. IT TAKES A VILLAGE used to be a popular saying about children; IT'S A GREAT SAYING TO APPLY TO OUR AGING POPULATION, TOO.

The chair used for Mom was an endangerment. Mom was physically mobile with her legs and arms. The chair had rough, raw edges and Mom would get her leg caught in between the side rail and the raised leg support. The metal raw edges cut into her leg. The facility never told us this was happening.

Always Look Beneath and Beyond When Visiting A Loved One In Long Term Care

We arrived for a visit and Mom had some gauze wrapping on an area of her leg. We asked Mom what happened but her ability to relate an incident became less and less as the Lewy Body Dementia progressed in her body and the end drew near. And, sadly, some will recite what’s been told to them by Staff as what happened when it’s not the truth. Mom said she didn’t know. Another common response from individuals with Dementia

Seeking out Staff, the Nurses (LPN’s by the way; only one RN is required to be on duty at a Long Term Care Facility in Missouri and he's/she’s busy “administering” and not on the floor --- safely tucked away somewhere and always seeming to be busy, in a meeting or somehow “unavailable”) we were told Mom’s “medical condition” was “deterioration” and the LPN claim the bandage was to cover a “sore” produced by those factors.

UNTRUTH. Mom had thrown her leg, she had thrown it against the raw metal edge and a cut had occurred. Only when we unwrapped the leg for ourselves did we see a cut, a gash and not a “sore” as we were told.

We watched her, also, and we saw this natural behaviour from a human being used to walking, used to rising from a chair, used to being active and a brain that still sent these messages and they were received and acted upon by the body. Mom's body "remembered" and acted even when parts of it were not capable of following through.

This wasn’t the first misreporting or coverup; that was standard operating procedure at the facility and I believe happens more often than not in almost all facilities.

 A Skilled Nursing Facility is designed and licensed to provide medical care. That is their focus, their reason for being; that is why in the State of Missouri they receive Federal and State Funds in the form of Medicare and Medicaid to provide specific services not available except in a hospital on a 24/7 basis.

The facility withheld a lot of information about "accidents" or grossly understated the effects of the occurrences.

No amount of contacting the Elder Abuse Hotline or the Office of the Ombudsman for the State of Missouri brought forth any real assurances these practices would cease and desist and would continue to be monitored.

No fine. No removal of abilities. Just a written report CITING the observance of a team that would on occasion visit the facility and a review to ensure it wasn't continuing when they rechecked. And for some reason, the “infraction” always seemed to “be corrected” when the facility was reviewed and then the “violations” were cited as “corrected”.

That was it. The End. Actually it was always “To Be Continued” because another incident, another accident, another negligence and another abuse was always just around the corner and we never knew when, where or how but we knew it would happen to Mom and to others and does every day in more facilities than we know.

Long Term Care Facilities are very adept at covering up and of smoothing over violations, even major infractions that take lives, as are many medical facilities, unfortunately.

To our knowledge, the facility started all over again with a "clean slate" and these infractions didn't seem to be tallied, recorded and actually seen for what they were -- human injustice on the highest level to those least capable of speaking out and most in fear of reprisal if they did.

Mom’s story isn’t unique. This is happening every day in all fifty states due to ineffective legislation with statutes, rules and regulations that are vague, open to interpretation and quite frankly, written many times to favor the Senior Facilities. Think it doesn’t happen “in your backyard”??? Think again.

Anyone who truly cared would have ensured Mom was immediately moved into another chair that did not have exposed and open sharp metal pieces. 

No one in the Administration, No Nurse responsible for the facility, no LPN who oversaw her section of the floor, no Aide, made a move to ensure Mom's safety and well being. Negligence leading to more challenges; Negligence that is really Abuse because Medical Professionals or Psuedo Medical Professionals have enough training and experience to realize what overlooking endangerment can do physically, mentally and emotionally to our aging population.

We couldn't be there 24/7 and the facility ignored our pleas they provide another chair. More sores, more cuts bandaged and more skin abrasions. We were not silent but we were only one voice. Unity and many voices raised are needed for any action to be taken.

Actually, the chair should have been repaired or eliminated from service by the facility but that would have meant spending money they preferred to allocated to paying for Country Club memberships for some of their higher level staff people. Yes, that's correct, the facility annually pays for certain organization Administrators various expenses including membership in local private clubs. Check it out, we did, if yours is a Not For Profit facility you can go online to Charity Navigator and find their tax filings and itemized reports.

Perhaps their reasoning for this allocation is  they have to prospect for future donations being a Not For Profit?  My opinion as a volunteer fund raiser for many years: There are many other ways to network and prospect that cost very little and produce the same results.

We, those of us who live outside of the walls of the Skilled Nursing/Long Term Care Facilities, who must survive, work, care for ourselves and others, continue to build a life as those within the walls of facilities did for so long, should not have to constantly stand guard, be ultra vigilant, spend hours upon hours ensuring those we love, those we care about, are safe, secure and treated with respect and dignity.

Care now. Make a difference. Raise your voice. Share the information we present. Be as effective providing protection for our aging population as we are as a society to children and animals.

Our aging population is vulnerable and easily taken advantage of and our laws are vague, weak and inconsequential in providing and ensuring protection, self determination and individual rights.

Rights Protected In All States Through Medicare/Medicaid

Second Subject Area: Resident Rights

Read the entire section using this link:

http://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/som107ap_pp_guidelines_ltcf.pdf

Rights protected in all States through Medicare/Medicaid

“F153
(Rev. 107, Issued: 04-04-14, Effective: 04-04-14, Implementation: 04-04-14)

§483.10 Resident Rights

The resident has a right to a dignified existence, self-determination, and communication with and access to persons and services inside and outside the facility. A facility must protect and promote the rights of each resident, including each of the following rights

All residents in long term care facilities have rights guaranteed to them under Federal and State law. Requirements concerning resident rights are specified in §§483.10, 483.12, 483.13, and 483.15. Section 483.10 is intended to lay the foundation for the remaining resident’s rights requirements which cover more specific areas. These rights include the resident’s right to:

• Exercise his or her rights (§483.10(a));

• Be informed about what rights and responsibilities he or she has (§483.10(b));

• If he or she wishes, have the facility manage his personal funds (§483.10(c));

• Choose a physician and treatment and participate in decisions and care planning (§483.10(d));

• Privacy and confidentiality (§483.10(e));

• Voice grievances and have the facility respond to those grievances (§483.10(f));

• Examine survey results (§483.10(g));

• Work or not work (§483.10(h));

• Privacy in sending and receiving mail (§483.10(i));

• Visit and be visited by others from outside the facility (§483.10(j));

• Use a telephone in privacy (§483.10(k));

• Retain and use personal possessions (§483.10(1)) to the maximum extent that space and safety permit;

• Share a room with a spouse, if that is mutually agreeable (§483.10(m));

• Self-administer medication, if the interdisciplinary care planning team determines it is safe (§483.10(n)); and

• Refuse a transfer from a distinct part, within the institution (§483.10(o)).




A facility must promote the exercise of rights for each resident, including any who face barriers (such as communication problems, hearing problems and cognition limits) in the exercise of these rights. A resident, even though determined to be incompetent, should be able to assert these rights based on his or her degree of capability."

IMPORTANT:  This last statement is often a "gateway" for facilities to freely interpret the content and intent cutting corners in services and provisions for the individual and for the entire community they supervise: "A resident, even though determined to be incompetent, should be able to assert these rights based on his or her degree of capability."

FREE TO CHOOSE.  Yes, we all want and deserve that freedom. However, we must be vigilent and listen, observe and communicate with residents and families as to what is done, how it is done and where challenges exist in the daily care and offerings in a facility.

Those with cognitive challenges, who are dependent 24/7 on where they live and who cares for them are vulnerable. Sometimes their fears are unsubstantiated but sometimes they're very real. WE MUST BE VIGILENT. WE MUST LOOK, LISTEN AND SPEAK UP, SPEAK UP. For the day is coming and we do not know how close it is when we may be walking the same road, the same way.

FOR OUR FAMILY:  The facilities excuses regarding following an outside Dr's "suggestions" Mom would benefit from having more movement in her arms and legs but didn't see Physical or Occupational Therapy as needed was a "financial block" for the facility.,

There were/are no programs of individualized "motion, movement, retention of physical abilities" at many facilities. This involves staff, takes time and also costs money.


Facilities often put the $ before the human factor. Decisions are made and staff who want to retain their positions are told to follow directives.


Stretching, passing a balloon, kicking a balloon, having fun, socializing -- some facilities use these methods while others are more "clinical" and determine if it's not billable, it's not doable.

So, they OFFER with language both verbal and physical through their staff the "activity" in a way that the individual will not accept, not want and therefore not participate. VIOLA!  No need. No expense. THE RESIDENT REFUSED becomes a common entry into the individual record and the facility has maneuvered its actions safely inside the above mandates.

Is this best for our aging population? To "trick" them into submission to what the people who are responsible for providing shelter, food and care want to provide, choose to provide?

That's unfortunately more true than it is false. There are exceptions. There are great facilities. What we need to ensure is all facilities, all sizes, private businesses and not for profits, adhere to humane standards with REAL CONSEQUENCES and not just a "report", a "slap on the wrist".

Our society members advocate for the prevention of cruelty to animals. It's time we had active advocacy highly visible, easily accessible, well known and NOT connected to any agency or division of government, independent and directly focused on Senior Advocacy throughout the United States.