Wednesday, May 15, 2013

Follow Up: State Investigation: Quality Individualized Care Not Provided

Mom, like so many others, is trapped in the "system" of Elder Care.

When we caregave at home, we searched for ways to provide services she needed for socialization, health care and for her growing special needs.

Despite widely publicized statements from Area Agencies on Aging of the State of Missouri and various "elder" assistance programs, we could never find anyone who (1) had not used up their entire budget for "that item" or "this service"(2) could provide more than 1 to 3 TOTAL "respite care" HOURS , only once a year (3) saw what we did as valuable and worth reimbursing.

Yet this same "system" doles out $5500 a month for "care" in a Long Term Care Facility calling itself Mom's "home" but providing less than 5% of the amount of care and concern we managed on our own, 24/7, with all the burn out and the challenges.

Living in a Skilled Nursing Center, you'd think everything was right there, at hand, high quality and automatically provided by a system set up to care for our elderly -- all in one place. Doesn't happen.

Laws, Rules and Regulations, don't make any difference. Reports are "detailed" in ways that follow required guidelines but in essence and effect, are either not provided, done as minimally as possible or not at all. If it's not an extra charge, it doesn't seem to get done.

Sadly, even the Not For Profit's like Mom's SNC operate as a "business" first and a "service provider" second. Those who require the least amount of attention and services are given "perks" like being included in trips outside the facility. There's usually someone who "helps" these "low maintenance" individuals with added benefits including more personal attention on the part of facility employees.

If you're wheelchair bound, you might get to go,but you need to be on a catheter because it's too difficult, you see, to take someone away from "the group" and find a bathroom.  We've always managed with Mom and took her almost everywhere but that's because we're family, we care and we provided a real "home".

I'd love to take a look at the SNC's cost analysis reports one day. I'd like to know who decides it's OK to have one LPN and two CNA's for forty people -- even if it is the "graveyard shift" from late at night until early in the morning, one resident requiring two people for assistance makes an emergency situation very challenging and heaven help the third person who needs immediate help when there just aren't enough hands available.

That's where, I believe, the problems encountered with recent deaths at the facility, one from failure to recognize a Urinary Tract infection and allowing it to develop into Sepsis and another death after a patient was "dropped" (the resident "let go" and fell was their description; a woman who had very little use of her hands and was already on Hospice) stemmed from -- UNDER STAFFING AND INCOMPETENTLY TRAINED SERVICE STAFF.

Missouri provides Medicaid payments for elder care only when provided in a Skilled Nursing/Long Term Care Facility. Each State has different policies. Levels of care and other resources available on Missouri Department of Health and Senior Services on this webpage.

For residents unable to pay the high average cost (Mom's facility receives $5500 from Medicaid and, I believe, also her Social Security payment because that allowance is below the Private Pay assessed to residents at the facility), there's only the choice of "what's available" at any given time.

Residents are "locked in" to a facility unless an opening appears when wanted/needed for a Medicaid Bed and that opening also has to be in a double/ same sex room (male/male; female/female).  You can be on a waiting list for years and die before a vacancy occurs.

BAIT AND SWITCH.  When we looked at Mom's current SNC, it appeared to be clean, no urine/feces smells or stains prevalent as in others, provided activities and had wonderful "outings" she could go on if she just "signed up".

They said they would provide her with food from a special list if she didn't like what was on the menu that night (of course, she couldn't see the list and as Dementia progresses, she couldn't think ahead or even to ask what they were having). It's Skilled Nursing but operates more like an Assisted Living Facility.

Most people "chose" to dine in the main dining room on the first of four floors, we were told. We thought that meant someone was always available to help residents get to the dining room; actually, it meant those who were capable of taking themselves had "assigned" seats at "preassigned tables" determined not by the resident, but by the "administration". Three meals a day,seven days a week, you eat with whomever they place you with and that's "your place".  Want to sit with someone else. Sorry, it just doesn't work out today/tonight.

We were told Mom could go into a special Alzheimer's Unit; she wasn't officially diagnosed with LBD at the time, she was using a rollerator (a walker with wheels) and she seemed, to everyone, to be cognizant. It was a self contained unit where activities and dining were all in one section; so great for Mom because walking was becoming a challenge due to swelling in her legs from poor circulation.

REALITY CHECK:  This Unit was "special" and we believe first come, first served are those who can "private pay". There was supposedly a Medicaid bed available and we thought Mom was given it but when we arrived to "check in", we were told her room was on the Third Floor because she was "so much more capable" than those in "The Special Unit". 

Months later we'd be told Mom couldn't go into the unit because she was no longer "ambulatory". So we began to understand the "hierarchy" of admission and how this facility used its Alzheimer's Unit as a "perk" and ensured mobility so less care would be needed.

Mom visited this NEW facility, the one where she now lives, and was looking forward to "moving" from the facility where she felt like they totally ignored her and where I saw them "punishing" her by removing her roommate for days at a time and isolating her.

The previous facility would not allow residents to use any bathroom except the one in their room even if they were in the dining area -- a considerable distance from Mom's room; and they didn't give her adequate medical care necessitating several trips to the ER and an outside Dr to correct problems they'd let go on far too long.

New facility;same old problems in many ways, is what we've discovered.

Let's face it, they're a "captive audience" with nowhere else to go. Limited by Medicaid to pay for their room and board, as Dementia develops adjusting to new surroundings, new "schedules" (not supposed to be but always are; residents are supposed to get up when they want, dine when and where they want but that's definitely not the case) causes caregivers second thoughts about "relocating" their loved ones even when the current facility is "less than" what should be.

All States have Long Term Care Facility Resident Rights and Facility Regulations. The challenge is getting those rights and regs enforced. Each State has an Ombudsman program that's supposed to protect individuals in SNC's.

In Missouri, (see info on Missouri's Ombudsman program by clicking here) it's legislated but underfunded; unpaid volunteers, and not many of them, work four hours a week in an assigned facility "getting to know" and "care about" as many as 150 - 300 residents. 

Do the math and figure out how much "attention" is given to how many residents in any one month let alone any year.  Small area offices overworked and underpaid people usually dedicated but almost always given far too many responsibilities and paperwork that knows no end.

It's amazing to me how much our society spends in time and money ensuring infants and children are given individualized care and opportunity, both from their families and from government mandates, and how little is provided to those who have given so much to provide the society and world we're privileged to have because of their hard work, dedication and perseverance.

Let's realize we have a voice and use it to provide for our loved ones and those who have no one to speak on their behalf.

Provide for those who are behind closed doors challenged by the progression of feeling less valuable and more costly.

Volunteer. Eat lunch with a resident or have dinner; make a friend and be a friend. They're someone's Mom, Dad, Brother, Sister, Aunt or Uncle and YOU can make a difference.

Start or Join the facility's Family Council.

Yes, Federal Mandate of 1987 says each facility can have a Family Council and provides guidelines for the community, especially family members, to be heard.

More on what a Family Council is in a later blog entry.

Wednesday, May 8, 2013

JH Is A Magician:Visible/Invisible:Her Disappearing Act

JH is quite the "magician" and has been since Mom entered the first Skilled Nursing Center in November, 2010.

I believe she's constantly making Mom's clothing and personal items disappear and reappear. Of course, as JH has told us about the report made to the Elder Abuse Hotline and Mom's missing money, I'm sure she'd say again, "You can't prove it."

Now you see JH, now you don't:  JH visits Mom at least once a week and sometimes more frequently. The facility finally put in a Visitor Sign In Sheet a few months ago but JH has been observed "passing by" the book and having to be reminded to "sign in" and "sign out". Observers have commented sometimes she listens and sometimes she ignores their requests.

Recently, JH has signed in with a scrawl instead of a legible signature and the name of the person she's visiting (my Mom) is also scrawled. Why make that difficult to read?  What's the point of trying to hide her identity or the identity of the person she visits? 

JH is observed as always visiting wearing scrubs.

I' m sure she claims she's working and dressed to work as a caregiver but it also gives her the ability to "fit in" and "blend in" as facility caregivers, the ones working there, come and go at different times as do Private Duty Nurses or Caregivers.

The facility was using many outside, contracted staff,and this practice is very common. JH is actively involved in working in the Senior Services community and very aware her presence, if she doesn't sign in, would be less noticeable as facility regular staff members would most probably think she was a Temp or with another patient on another floor.

JH knows all the ins and outs and how to get around. I'm sure she's even used the Service Elevator acting as though she works there.

Recent additions to the Reception Staff in the last few months enable JH to walk right by as though she was going to work when entering. JH is very observant; we believe she learned early on as an award winning Tennis player in college and as a ranking amateur tennis player today, how to size up the competition, look for their vulnerabilities, aim for those specific areas to gain the advantage.

Fortunately, and I recommend this to everyone who has a loved one move out of their home into a facility, I took pictures of everything I sent with Mom and everything I took for her to go through with the intent of packing away what she didn't want or need at the time.

This came in handy when JH "took over" and removed everything to her home "because Mom wanted JH to". They proved invaluable as a means of letting JH know we were very aware of what she was "keeping" and not bringing for Mom to use. It also convinced JH we knew exactlly what was "missing" from everything she claimed to have returned when I finally regained my relationship with Mom, her trust and Mom's wanting me to keep her things, again, for her.

I've taken to making lists of what Mom has in her room at any time; we often switch out seasonal clothing or I take things she decides she no longer "wants" or has lost the ability to use like pants with drawstrings she cannot tie or buttons at the waist she can no longer unbutton.

I also try to continue to take pictures with my cell phone from time to time especially when I notice items missing.  

Interesting how there are only two people in one room (Mom and her roommate, W), we do all the laundry, and things just happen not to be there one day that were there the day before. Then a few days or even a few weeks later, like "MAGIC", one or more items reappear. Interesting, too, how disappearances seem to follow a "visit" from "the Magician", JH.

An Example: Visiting and taking all Mom's laundry needing to be washed and rearranging all her clean clothes ensuring she has sets of clothing and additional pieces is a regular, daily chore. 

Returning the following day, checking the laundry hamper, one item, a blouse she wants for later in the week but wore the day before, isn't in the laundry hamper or anywhere else in her room including all drawers and under all furniture -- or even in any of her roommate's drawers or under her furniture.

ONE ITEM DISAPPEARING INTO THIN AIR. Checking the facility laundry, checking with staff, ensuring Mom's roommate doesn't have it among her things (W is incapable of getting out of bed or a reclining chair they use for her).


It doesn't return where it disappeared from and not "returned" as a mistakenly taken item by Housekeeping to launder or by anyone else. It's "hidden" underneath items Mom seldom uses, in a drawer with unrelated items, under the bed, under Mom's chair -- all areas I thoroughly searched because I noticed one or more things were once again "MISSING".

I believe JH thinks we'll believe Mom is "totally losing it" constantly "misplacing things" and get her highly medicated. Not going to happen, JH; we see the game you've been playing with Mom's mind. Mom may have LBD, she definitely has decreasing mental abilities, but we can see the Undue Influence used to try to manipulate and control Mom's relationship with us, her life, her relationship with the facility and our lives.

A friend asked why I think this happens. I believe it's a "game" JH plays to confuse and anger Mom and to alienate Mom from her family.

It's a game she's played well in the first sets but now that the game has advanced to the finals, JH's game is seen for what it is and has been.

Our strategies are developed and we're playing her game no longer in the dark but with the lights on and constantly looking for higher wattage to see more clearly every move, every play.

Before Mom and my relationship started returning to previous levels (Pre JH levels), Mom would say I took whatever was missing or she couldn't find. I was always the culprit I've been the "villain", the "abuser", the "uncaring daughter". JH is also a great painter of portraits of people in a distorted and dark way.

I believe JH had built that emotional response in Mom from all her "consultations" taking Mom for "private" talks before Mom entered the first facility during the time my husband was in his last weeks on this earth.

JH wasn't given the access she wanted/needed in our home to find out if Mom had more money stashed somewhere, perhaps a life insurance policy or some stocks and bonds JH could get her to sign over or gain power over. I was the gatekeeper and JH couldn't get past as often and in the ways she wanted to make her "association" with Mom financially beneficial.

Getting Mom permanently into a facility would give JH access when she wanted, for how long she wanted and how she wanted. Our State like so many others provides Long Term Care Residents with the right to see who they want to see and doesn't consider this "right" paves the way for Elder Abusers to use Undue Influence and to take money and other valuables from the elderly.

You see, once in the first facility, JH made sure Mom changed her mailing address and had access to Mom's mail as she visited frequently.  Mom had given JH the right to "take things" to keep in JH's house. I don't believe Mom meant any important papers but I'm sure JH would contend Mom did.

Why do Ibelieve JH went through and took some of Mom's private communication/important papers?

I'd needed to find Mom's Social Security end of year statement for tax purposes as she'd lived with us for ten of the twelve months and we'd always taken her as a deduction.

No paperwork could be found in her room at the facility all of January, February and well into March. I was ready to call the SSA and ask how to get another copy when suddenly the document "magically appeared" in Mom's metal box she always used to hold important papers and had at the facility albeit without some papers including a recent Passport I did not feel she needed in the facility.

It's our belief JH used the State Elder Abuse Hotline to purposely and intentionally make a false report, using her position as an RN, a caregiver, experienced and specializing in the elderly, to gain immediate acceptance of her "claims" and bypass a more thorough investigation.

Another Blog Entry for a later time: 
Manipulation and Control of the Elderly for Personal Gain

Portrait of JH's Abuse of Mom and Our Family


Tuesday, May 7, 2013

Portrait Part 2: Abused Family: Journey Into The Darkness

Originally published May 7, 2013. This would be less than a year before Mom's death. The challenges below were from Summer 2009, years before Undue Influence came into our life.

Enlightenment is important; keep a journal for those family members who question you as you journey with a loved one

Part 2:  Journey Into The Darkness

Summer 2009 was like many others. Mom's recent challenges with surgery on her left leg were finally becoming a part of our recent past.

Mom, in her early Nineties had a stint implanted and when that didn't work the Dr removed a vein and created a new artery.

This was followed by several weeks stay in Rehab complicated by a severe foot infection from diarrhea the Rehab hadn't controlled seeping into her bandaged foot and leg causing a deep sore and formation of an eschar: a jet black area where circulation appears to have ceased and thought is the entire area has "died" and will spread or cause gangrene to set in. Then came Doctor's concern removal of foot and leg might be necessary.

As a family, husband and I committed to 24/7 numerous bandage changes, emotional support and trying to convince and encourage Mom to elevate, elevate, elevate her leg and exercise, exercise, exercise to build strength and maintain ability.

Mom was anything but the "easy patient" and although we didn't realize it then, she already had Lewy Body Dementia so her reactions and actions were often anger, hostility, depression and even hallucinations and delusions were present. 

These were  signs we did not see for what they were but attributed to "medications" or "depression" from being "confined" or "limited" or "told what to do, when and how" to provide healing which she wanted but didn't appreciate or like how it had to be done.

We'd nursed Mom for more than nine straight months. We were determined to save her foot and leg and we did. Today, there's a small, almost invisible white line on the bottom of her foot; it's the only remaining "mark".

Mom has had the use of her leg, could walk and get around very well until the LBD took over her body to the point of causing severe interruption in physical abilities including balance, standing and walking. But we've given her six more years beyond her surgery and resulting eschar and she's enjoyed the independence we were able to provide. 


Lewy Body Dementia requires someone to show you the "language" of the disease and without being shown its nuances and variations, you easily overlook, misunderstand and assign different meaning.

This blog hopes to provide that "language", that "insight" shared through close, personal views of this devastating disease that breaks apart individuals and families.

It describes how a family and an elderly person can be taken advantage of by someone seeking personal gain. It shows the real life effects of Undue Influence on the victim, the family and society as a whole and the costs we all shoulder from not recognizing all forms of Dementia, especially Lewy Body Dementia with it's many individual variations.

Yes, that late Summer of 2009, we were finally returning to "normal" life as a multigenerational family with a daughter in college and very elderly Grandparent in residence.

In July I even volunteered to work for my Church in a local Nursing Home (SNC) for a couple of hours a week; the group was desperate for help and I thought it would give me time to pray, reflect and share my time with other Seniors.

Having cared for Mom over the years as her physical needs grew, I felt a "calling" to reach out to others less fortunate who lived in facilities rather than in their own homes or with extended family.

That's where I came in contact with JH who was also a volunteer from my Church. I thought JH was an amazing person; so dedicated and so caring. She mentioned working with men and women with Alzheimer's and Dementia, how she was a Registered Nurse and worked for herself.

JH told me she worked on her own, not for a service, didn't accept insurance payments but worked for cash only. Of course, it wasn't that "cold" when she talked about it; it was simply a passing mention, one you make or hear as a part of a conversation on many things and so it doesn't "ring any bells" or "stand out" at the time.

JH usually attended Church services at a different time, I didn't see her or know her. I'm not the only one who really doesn't know JH; in the last three years I haven't found anyone who attends my Church who really does. 

JH seems to blend in and not stand out; even her choice of clothing and hairstyle are very nondescript; usually neutral colors and almost always no makeup. Several people have mentioned they've seen her, some have worked with her on Church projects but I haven't found anyone who really "knows" JH.

As a multigenerational family I thought what a "blessing" JH was to people who were her "clients", as she called them, for sons and daughters who didn't live close to their parents and greatly needed someone to care about and for their loved ones; she seemed so concerned and talked about making dinner every night for one man and how she took "her clients" to Dr's and even helped them get rid of items they didn't need, move out of their homes and into Nursing Homes "when needed".

In mid July my husband started having "intestinal problems" and by late August we'd gone to the ER and to visit a Doctor.  Tests were inconclusive. We went home. As the weeks passed, he became weaker and weaker; once capable and doing everything around the house, he could barely sit or walk and tired so easily. By late September, we went back to the ER and thus began the final journey of our life together -- although we didn't realize it at the time.

I stopped volunteering with the SNC and had no more contact with JH until late November 2009 when I texted her to pray for the soul of my brother in law who'd just died.

My husband was in Critical Intensive Care, had been in the hospital since late September with MRSA discovered, an incision in the ER that should never have been made causing complications, surgery to remove part of his small intestine, major reactions to chemical drips (I called them experiments) to try to figure out what would kill this "flesh eating disease", adrenal hemorrhage, pulmonary embolism and so many more life threatening medical challenges that were only just beginning.

My husband spent over 100 days in the hospital, almost all the time in critical intensive care. One challenge would subside and another would appear. We "celebrated" our forty first anniversary in Critical Intensive Care; I couldn't get out to find a card so I went to the Hospital Gift Shop, found a child's "magic slate" (the kind you write on and then raise the filmy cover to erase what you wrote or drew for another message or drawing) and created an Anniversary Card to put up in his CICU room.

Little did I know he would soon be joined in that Unit by his brother and then only a short time later, his oldest brother would precede my husband, dying in late November, 2009.

I remember so well writing our names, the date of our marriage and the date of that anniversary. I also wrote, "In sickness and in health, to love and to cherish" but I did not write "til death do us part". Even though the challenges we faced were overwhelming and too numerous to count, I did not believe our life's path was so close to the end of our being together.

My daughter and I were barely hanging on emotionally and monetarily; so many downturns, loss of ability to work, trying to balance obligations with mountains of medical needs and Mom's growing challenges along with my husband's. Each day came and went without knowing what would happen next; all we could do was wait for the next Tsunami and ride the wave until it leveled out while praying another would not come and yet feeling it was just beyond the horizon.

We had to leave the hospital; insurance ran out; husband not ready to "go home" so finding a Rehab Center was critical and since we needed one skilled in Wound Care, added to the difficulty.

Husband had four openings on the front of his body; one from the ER incision that should never have been made as it caused more challenges, spreading of the MRSA and other complications; one from the incision for the surgery that, along with the second one for a drain into a bag was supposed to be closed as soon as husband "gained more weight" and a fourth that opened by itself due to the lack of nutrition and the ever challenging blood count not high enough to promote healing.

Wound Vacs, two of them were on for a long time,and then one, and finally, just three or four plasticlike Illiostomy bags constantly accumulating drained materials from his intestines, constantly needing to be drained and changed.

My husband didn't know lack of pain and suffering and I cannot begin to describe how watching this tragedy unfold was shattering our world one day at a time. I know it was difficult for my daughter, young adult though she was, to witness her father's struggles. I also know it was a challenge to my mother to be in the same home, not taken out for excursions and given the attention she'd received over the months of highly personal care she'd received so recently.

When we were finally "going home" from Rehab, it was with hope but also with trepidation. We would get Home Care but soon found this "service" was considered "temporary" and that I was expected to be the one to take over and do all the changing and patching of bags and other numerous needs of my so very chronically ill husband.

Much too often one or more, even all four bags would break loose and flood my husband's hospital bed in our converted family room and him while I tried to piece and hold them together waiting for Home Care to decide if they would send someone out, again, another unplanned/unscheduled time, to try yet another way to get a full day or even a few more hours before another breakage occurred.

Many nights I slept upright in a chair beside his bed; he could no longer climb the steps and sleep as we had for so many years beside one another. That privilege and companionship had ended.

Without sufficient insurance to cover the escalating medical costs and savings already almost totally gone due to various other challenges including the economic downturn and devaluation of what remained, we struggled to pull together and determined to make it through "to the other side" which we truly believed would be my husband's health returning him to the strong, capable person he always seemed to be "before".

So, when the offer of providing evening meals for our family for a month from a volunteer organization at our Church was given, we were most appreciative.

Little did we know this would be the beginning of even greater challenges and the end of our family life as we knew it.

That was how JH entered our life; she volunteered to be the organizer, the person responsible for scheduling deliveries of the meals, the person who contacted Church members and the person who was constantly in our home and keeping in contact with us in person, by email and by phone.

JH inserted herself into our family and made herself indispensable and then gained our trust and finally split us apart as a family unit.

More on that time of going through a glass darkly alongside a woman who shattered our lives in a later blog.

If I knew then JH would turn out to be someone we truly believe is an Elder Predator and Abuser, I would have locked the doors and windows and refused to return her phone calls.

But I didn't. And now I'm here, without him, the love of my life, and without her, my mother, my friend, the person who gave me life and who showed in so many ways how deep her commitment was to me and to our family, who was  torn from my life as my husband was starting the final weeks of his earthly journey and who would be totally turned against me and "replaced" by JH.

Today, I still struggle with her influence, her manipulation and control. The difference is I'm wiser, the light has entered into the darkness and I'm shining it far and wide so others will see what I failed to see and endured a life journey I wish on no other individual or family.

Mom and I have moments of closeness but we also have JH induced times of Mom being angry and frustrated and turned against me for some "conceived idea" Mom's life was never great in our home and she was never cared about or loved while there.

And, we believe JH plays with Mom's mind creating scenerios and making things Mom cares about disappear and reappear, like "magic", convincing Mom these "thefts" and "misplacements" are common in "faciilties like she's in".

As you'll discover we believe in a later blog, it was JH who worked to ensure Mom went into a Skilled Nursing Facility and how we believe JH knew with her RN degree, years of practicing Nursing and working with the elderly with Alzheimer's and Dementia, exactly what she was doing and what it would do to Mom and our family.

Another Blog Entry to Come:  Portrait of an Abusive/Abused Family Part 3:  Walking With A Wolf In Sheep's Clothing