Monday, April 29, 2013

Eureka! Found Blogs Of Other LBD Writers

It's like finding a map or at least a table of contents to a complex textbook.

Have been talking with my daughter and sharing the many changes I've noticed in Grandma's abilities to communicate -- words substituted with no relationship, loss of ability to find word or make complete sentence, moving from one idea to another as though they tie together but with no bearing on one another; talking, talking, talking and laughing, laughing, laughing or angry, angry, angry -- never quite sure which emotion will surface or present itself.

Finding other members of the LBD community and their writings in varying stages of the disease (and I think we might find a commonality or possible similar progression if we compare experiences) is like releasing a valve on a pressure cooker and finding that controls the contents, if only for a little while.

For us it's also complicated by visits from JH, the woman who befriended Mom and who, we believe, works to cause more confusion and to try to get Mom to do things and say things that will cause friction between us and potential problems for Mom.

Reading, reading reading.  No one. Not a single person mentions the complex and ever changing "soap opera" of the delusions/hallucinations their loved ones mention or even relate.

There are strange things like seeing a zebra on the lawn, mistaking a spouse (female) for a secretary of many years and remembering the woman as pregnant (a laugh because the spouse said she'd been dieting and lost thirty pounds).

But then again, perhaps someone visiting mentioned the weight loss and the LBD husband rearranged the information and recollected weight loss after pregnancy which then recalled the memory of the pregnant secretary and mixed all together assembling as above. We've found Mom's delusions (and it's been mentioned by others in their writings) have some source in a "real world" experience; just as the loss of accurate language can make LBD people unable to communicate a simple thought or need accurately, taking the time to analyze what they say as this ability decreases brings about understanding.

LBD is like a mixer with random ingredients mixing in and never knowing what the end results will be because there are drains and openings where some fall through. Other parts never get mixed in, some stay in large clumps and don't "dissolve" and others fall away.

This disease, if you aren't suffering from it as the person or the caregiver, can be fascinating. It can also be frightening because the temperment of the person can go from friendly to furious and back again in what can be split seconds and may appear, lie dormant for hours, days, weeks or even years (as with one writer's spouse).

Why aren't we associating other "mental illnesses" with LBD and other Dementias and using research in those areas -- like schizoprehenia or brain damage? 

Linking together these areas of study might provide clues to discovering cures and ways to manage.

Talk about Dementia. Read about LBD. Spread the word.

Work towards a better future for our aging population.

Saturday, April 27, 2013

Portrait: Part 1:Abused Family:Before JH Came Into Our Lives

Three years enduring emotional upheaval and almost financial ruin; almost two years of having my mother telling me I was no longer her daughter and being replaced by JH who took over many parts of Mom's life, whatever she could influence Mom to do.

Walk with me as I turn back the clock in this blog to the time "before" JH, the woman we believe is an elder predator and abuser, came into our family's life

Part 1: A Portrait of Our Multigenerational Family Life Before JH

My husband and I asked Mom to come and live with us and our first child, a son, just three months old, after she fell and broke her wrist. We were married three years at the time.

Mom was 57 and had worked as a Beautician standing on her feet all day long since I was about 8, first to provide a way out for her and me from my father, an alcoholic, then as a means of sustaining our everyday life as I grew into adulthood, and, finally as a means of providing daily life for herself. 

Divorced when I was 13, Mom and I moved around for a few years prior to the divorce being granted. Mom managed to set up a small Beauty Salon with the financial help of one of her sisters . It was my mom who worked six days a week and a friend who worked a couple of days a week that were the only workers.

Mom lived in the same rental apartment after I married we'd lived in together since I started high school. She usually made just enough money for rent, utilities and supplies for the business and food, rent, utilities and transportation for herself after I married.

Mom had accumulated savings amounting to one month's survival, either herself or her business, but her friend wasn't able to work all the days necessary to keep the doors of the business open until Mom could return to work.
When my husband and I first talked with Mom about coming to live with us, we made sure Mom knew at any time she could move and live wherever she wanted.

My husband was a loving and caring man who welcomed Mom as another member of our family and respected her as my mother and equal to his own; but he did have a challenge calling her "Mom" in the beginning as did I with his mother. We both had great Moms and for each of us that was a special term of endearment.

For the almost four decades Mom lived with us, she could have chosen to move in with many people including sisters and inlaws, friends and other relatives.


LBD and other Dementia often interweave the past with current day and often cannot separate "reality" from "influence". It's relatively easy to sway the advanced elderly with progressing Dementia, even against people they've known and loved for years.

Our home was often filled with relatives, primarily my husband's side of the family, and guests. When my husband and I travelled on business trips as Mom grew older, I hired the same person each time for companionship for Mom because Mom enjoyed her visits and didn't see it as "caregiving".


We told Mom to take her Social Security benefits, which she chose to start at age 62, and use the money to travel and for whatever she wanted. We had been blessed with a good life and had the ability to totally support her and our children through our business efforts.

My greatest hope growing up was someday I would be able to provide a better life for my mother including giving her "the world" she loved to read about.

Never having had the privilege of attending High School as a young girl from a rural community, when I was in my Freshman year of college (achieved through scholarships and working my way through), Mom went back to school and received her GED. I was so proud of Mom when she graduated! And she was overjoyed when I graduated first from High School and then from College.

IMPORTANT: Almost all JH's visits with Mom were spent sitting together and talking for an hour or more. (They still are and if I or my daughter happen to stop in to visit Mom at the same time we're told, "This is MY PRIVATE TIME TO VISIT.") JH always took Mom away from our home, to somewhere where they could visit "privately".

We moved Mom to live with us in Chicago and she moved with us to the East Coast and then to the Midwest. We always made sure she had her own room and we provided most furnishings and decorations for her.

In the home she was forced out of by her real abuser, she had the room she picked out when we built the house with windows "on the world" as she used to say, a walk in closet and the room was large enough to accommodate a full size bed, lift chair (which we bought for her shortly before she had significant leg challenges), two nightstands, dressing table and chair, TV, flower stand and double dresser. As our children went off to college, she had the benefit of a bathroom exclusively for her own use.

Mom’s first trip was to Hawaii; it was the second year she received Social Security because it took her entire first year’s Social Security payments, every month's check and some additional money my husband and I provided.

From the age of 63 until 87, Mom travelled the world and often took four trips a year; two by herself and two with our family. We paid the expenses of family trips and made sure Mom had money when we were fortunate in our work and income to provide her extra money so she had two trips she could take by herself; usually one was in the United States by motorcoach and the other was to far away places most people dream about but seldom get to see.

I cherish Mom's passports and the memories from the many places she visited: every State in the US, Mexico, Canada, the Caribbean, South Pacific islands, many areas of Asia, India, South America, Africa, numerous trips to Europe. She travelled by land, by air and she traveled by sea.

Because Mom didn't like having a roommate and often didn't have the money for a "single occupancy", my husband and I gave her the money for that privilege and for additional side trips and spending money.

After Mom could no longer take the "long" trips, she still went with us on our twice a year family trips which were by car and by air. Mom used her money for her airfare and entertainment while travelling and usually bought a dinner out for the family. Enjoying "buying" for her grandchildren and great grandchildren, Mom's small Social Security check bought many gifts and surprises over the years including books for her Grand-daughter's college courses.

Mom made great memories to last a lifetime; it's sad how her "abuser" doesn't help her focus on all the good, all the happiness and all the joy Mom experienced in life. But if she did, Mom wouldn't have succumbed to the Undue Influence JH wielded.

As Mom aged, we accommodated her changing physical needs: my husband eliminated steps, covered a concrete walkway with a ramp for easier access to our home's entry door; in each toilet Mom used (including our guest bathroom) we installed a permanent set of attached handrails for her to ease herself down and push up.

We purchased various types of chairs for her to use in the bathroom and in the tub/shower so she could take frequent showers which she loved to do. We installed a set of railings on one side of her bed so she could get in and out more easily. We changed chairs in her room at her dressing table from a bench to a chair with arms so she could continue to sit and do her makeup.

In the earliest years, we removed the carpet runners from the stairs to ensure she had a solid footing. She wanted to do her "regular" housework so we ensured all products she used accomodated her growing inability to read and made sure other household cleaners were removed from areas where we stored "her cleaning supplies". 

We removed all throw rugs and area rugs so there would be no possible chance she would trip and fall. We taped shut some of the holes on salt and pepper shakers so she could continue to cook as long as possible. Our plans included staying near and with her and "being busy" but watching as she tried to cook or wanted to clean.

As Mom's eyesight and her abilities decreased, we continually adjusted, looked for ways to accomodate and always tried to give her the feeling she was needed, wanted and above all, valued.

Mom had always felt providing meals and keeping the house clean was her way of being a part of the family; I'd tried hiring help but Mom always found them less than acceptable. Time after time the services would contact me and said she'd asked them not to come back and went behind them cleaning (and this was from the time she was in her mid sixties onward).

I just saw an old episode of The Andy Griffith Show where Aunt Bea, who lives with Andy and his son, leaves for a few days to visit a friend. Aunt Bea is returning and Andy and his son run around the house making messes; they'd kept the house clean and picked up. Andy knew Aunt Bea would be devastated and feel not valued if the house were well kept in her absence. Aunt Bea was a part of their family.

Mom was a part of our family. We each contributed to our family life in the ways that best provided for the group and each person according to their wants and needs; we still do.

We purchased numerous canes, rollerators and travelling wheelchairs so she could continue to go out with us and even travel with us. Yes, we took her on family trips including Disney, the Caribbean by ship and by land, the East Coast to visit family and many other places. It's not easy travelling with a wheelchair and assisting someone toileting or other personal needs; a family who has a special needs child or adult understands what it means to them and to the person.

We bought special seat cushions for chairs, for the car and for her personal use. We provided all her "special care needs" including disposable pants and pads, creams and ointments, paid additional costs of medicines her insurance did not cover.

Mom used all her Social Security money every year including when she finally stopped travelling to buy herself clothing and anything she wanted, gifts for her grandchildren and great grandchildren whenever she wanted.

Mom controlled her own money and used every penny she received each month from the time she first received Social Security, five years after she came to live with us.

We'd had a joint checking account but when we had to get Medicaid for her because her medical bills were becoming too much for us to handle and she had no assets or funds, I took the advice of the Medicaid worker and removed myself as a joint owner of the account. I was told there really was no question about Mom's financial support from her funds and what we provided. REMEMBER THIS FACT AS YOU READ THIS BLOG.

My daughter and I worked to ensure Mom's life was as unafffected as possible when my husband first became hospitalized in late August, 2009. Little did we know the journey would be so complicated and so challenging to our entire family and end with his unexpected death.

This begins the second part of our story, Portrait of an Abusive/Abused Family, Journey Into The Darkness, in the next blog entry.

Thursday, April 25, 2013

Writings of An Accused Elder Abuser and An Enabler

You're reading the writings of a person who was reported to the State Elder Abuse Hotline for financial and emotional abuse of her mother in the home they shared for almost forty years, where her daughter and chronically, critically ill husband (who would pass from this world just a few months later) also lived.

My adult daughter states she has to have been an "enabler" because she lived in the house and if Grandma was "abused" and she didn't report it, she was an enabler. Then, too, so was my dying husband as there were times when he was able to be up and about and had a phone he could have used to make the call to the Hotline. Three people. One family. Almost forty years of multigenerational living with extended family and friends and no "elder abuse" problems until one woman entered our lives.

Innocent until proven guilty is what we believe our United States and State Laws promise.  Due process, we’re told, we all receive.  From early education onward we’re taught we’ll have the ability to face our accuser and provided specific rights before authorities make decisions.

Qualified people who understand Elder Abuse and the challenges of the elderly including all forms of Dementia including the Lewy Body Dementia then undiagnosed in my Mom are who we expect to be responding to and ensuring a complete and thorough investigation is made of not only the person accused but the person making the accusation.

Sadly, our State hires people to work for the DHSS doing general work with Seniors who only need to have a GED and a year or two of working in a "service related" job. Ringing up sales one day at Walmart and tomorrow determining the lives of our elder citizens and their families.

Even more concerning is the Adult Protective Worker appointments which simply require a year's work at entry level and "good reports" plus a little extra training.

NO SOCIAL WORK DEGREE. NO LICENSED CLINICAL SOCIAL WORKER DEGREE OR EXPERIENCE.  NO MASTERS IN SOCIAL WORK.  These people make life affecting decisions and grave health errors as they did in our situation. More on the DHSS APW visiting my husband in the hospital and her possible "deathly" mistake in another entry.

Apparently our State and others choose to write Statues setting aside indivdiual rights believing anyone accused of the crime of Elder Abuse has to be guilty and therefore does not deserve rights. To access my report, I'd have to hire an attorney or try to convince the State Attorney General's office to investigate one of the their own State Departments.

Highly recommend you do a Google search for Elder Abuse Statues/Laws and fill in your State's name. Be informed. Read carefully. Assume you're accused and not guilty as you read. Could you lose what we have? Should you have to?

I’ll write another time about what we’ve endured as a family for three years because of the false, misleading and deceptive report filed by a woman who has continued to insert herself in the life of my Mom with diagnosed Lewy Body Dementia not as the friend she proports to be but as a manipulator and controller trying to continue to hide the real emotional and financial abuse she causes.

I'll continue to provide guidance on the journey with Dementia, especially Lewy Body Dementia which we are getting to know so well and the world of living with an aging loved one through providing Home Care and continued care after entry into Skilled Nursing.

Each day by our actions and whether we choose to speak up or remain silent, we each create the world we live in.

We are responsible for the present and the future using the past as our guideline.

My daughter and I continue to raise our voices to bring about change.

We travel the path our elders walk on, we’re just a few steps behind.

Wednesday, April 24, 2013

An AHA! Moment. Elder Abuse is Isolation. Removing pictures isolates.

Mom's repacking...again... Lawrence, her "imaginary husband" is in the hospital...again... but he's coming for her as soon as he gets out. 

Mom has no idea when that will be. So, she sits and waits and doesn't want to do anything or go anywhere because she often "misses" his visit if she isn't in her room.

Interesting, isn't it?  Ever visit someone in a facility? There's usually only so many places they can be and it's relatively easy to find them if you just ask on the floor, at reception or one of the attendants. 

But Mom was convinced, because she'd been told by the "sister" and "the woman who comes to visit" she'd missed "Larry's" visit, he couldn't find her or he left because he was upset when he didn't find her in her room.

THINK ABOUT THIS TACTIC.  The more immobile, the more sedentary, the more Mom doesn't participate, she's "signaling" the facility she may be in depression. What's the prescription for depression in facilities?  MEDICATION, OF COURSE.

Julia's a Nurse. She's specialized in care of the elderly. She knows if she can influence Mom and get her to appear to be "out of her mind" and "depressed" there will be a call placed to the Dr and a request for "meds".

Julia stirs Mom up and she tries to stir us up by creating these scenerios and conflict. Julia keeps trying but she's not succeeding because we're too vigilent and no matter how many calls to the Ombudsman's office or to the State of Missouri Department of Health and Senior Services do not serve to get Mom the protection from this Abuser, we will continue our vigilence to Mom's end of days.

Mom says, as she did when she said he was in for pneumonia and couldn't see her to get married (before they "tied the imaginary knot" I wrote about in an earlier entry), it's his first time ever to be hospitalized. 

Actually, it's at least his second or third time since this "storyline" started a few months ago but Mom's recall can only retain short term information without reinforcement for short times. This is another reason why we believe it's Undue Influence by Julia.

It's fascinating how some parts of Mom's delusions have repeatable patterns while others are whole new stories so full of information and development you'd think you were watching or listening to a Soap Opera.

Fascinating because there are no reports anywhere about this type of Dementia hallucinations or delusions where storylines develop and dialogue is so abundant among the characters.

Interesting, too, how the focus is on Mom getting money to pay for things or having to have her Social Security card and photo ID for some "legal problem". She didn't need these documents to get married, but she now needs it because the "baby" is in the US illegally -- the "imaginary" baby adopted by Lawrence?

You'd think it would be Lawrence's problem; guess Julia forgot how she set up that scenerio originally.

Today, however, a new light came on in my brain about this "storyline" and I see more clearly how Julia  is using it to abuse Mom with more Undue Influence.

Abuse that includes the constant disappointment when Larry doesn't come to visit, is delayed yet again in "taking her out of the SNC" by hospitalization and ever on going challenges that get invented along the way.

There's more. Directed at my daughter and me specifically. We're her targets as much as Mom is.

As I looked through what Mom kept packed I noticed all the family pictures were placed inside a box. Out of sight. Ready to go. Cherished but unseen.

Get Mom to believe she's constantly moving out of the SNC and she keeps the pictures packed away; family pictures.

Forget about your "real" family, Mom, Julia seems to be saying; you'll have a better family with your imaginary husband, his mother and the baby; oh, and the "sister" who so conveniently is always in the picture.

Alz and Dementia resources recommend placing pictures in the room. Julia knows they serve a positive purpose until the last stages and she knows removing them may cause further mental degradation.

Julia's tried to abuse Mom through convincing her she's far more capable physically than she is; many of Mom's falls and Mom's dislike of the SNC facility and her caregivers seem to coincide with visits from Julia and remind me of Mom's negative feelings towards my daughter and me after Julia entered our lives.

Also, keeping Mom focused on this "plotline"causes her to believe each day Lawrence is coming for her and so she can't possibly do any activities, leave her room for long and has even not gone down to meals unless we're there and work with her to get her to go. 


ELDER ABUSE.  One of the characteristics is isolating or separating the person.

Julia can't remove my daughter and me; she's tried for three years.

We're three generations that can't be pulled apart and Julia has tried numerous ways; all skirting or twisting the laws.

I believe it was Disney's Jimney Cricket who said "A Dream Is A Wish Your Heart Makes". For Mom, her dreams have been set in place, refocused and manipulated to provide at the least entertainment for a woman who walks into and out of Mom's life leaving behind chaos and destruction for Mom and our family. Why? You'll have to ask Julia.

We're wiser now, Julia.  We see you for who and what you are.  We've told others and now we're finding others to warn because you and what you do are going to become a major threat to our society and economy as our aging population grows.  Your removal of cash and assets from the pockets of those who are living longer and more in need means they'll need Medicaid or other charitable assistance much sooner than they should.

Each month Mom's facility gets over $5,000 from Medicaid for her care.  It'll soon be three years.  Mom didn't need the SNC and with the right help from good professionals, she probably could have ended her days in her home, with her family, where until Julia came into her life and worked to convince her she didn't belong, was where she wanted to be.

Reports are rampant about the high cost of Medicaid but no one seems interested in the high cost of Undue Influence and taking money from our Seniors at a time when they're the most in need of what they've managed to save or put away. 

Wake Up America!  Realize until you advocate for our Elderly and recognize Elder Abuse in all its forms, the "real" Elder Abusers will continue to wreck economic havoc on our Seniors and all generations who take on the burden imposed by the financial hardships of Undue Influence.

Friday, April 19, 2013

Resources I've Found Helpful Analyzing and Gaining Perspective on SNC's

Research has been a part of my professional and personal life for years. Sharing what I find and enabling others to be enlightened as a means of changing the world, even the small part we each inhabit, is important to me.

The internet is amazing but it's also limited to what's posted, the source of the posting and finding that one or more specific site with just the right info. In my numerous journeys into googleland and beyond I've found some exceptional websites sheding light on dark areas I've found myself trapped inside.

I'll start a list I invite you to explore if you have a loved one in a Skilled Nursing Center. Some sites will be specific to my State of Residence, some to areas of personal interest as my life is involved therein and some will be places I see as providing great insight into an area of life most of us enter without any real training or information -- it's a lot like parenting.

In this case, the adults we're responsible for have specific individual rights that we didn't face with our children (at least not until they also became adults) like self determination and making choices that endanger them while our hands are tied. Even with a guardianship, the Courts still control what can be done and can make life very challenging; I know, I was a Guardian for a child and it was a nightmare. tools and data; nursing home deficiency reports; they seem to be a little behind but what I do like is you can see at a glance a list of historic reports and other facts   go to Nursing Home Inspector for information on inspection deficiences, resident condition and nursing home staffing info   latest figures on occupancy and capacity of facilities and other statistics including how much time was spent each day by various service providers like Nurses, CNA's and RN's on average. Most interesting and shows how "bottom line" business focused even the Not For Profit facilities actually are.   great website for evaluating Not For Profits; if your SNC is for profit you won't find any info here but if it is NPO you can pull up previously filed tax forms and really get your eyes opened as you read through the financial pages listing expenses and payroll along with information on Mission and other areas.  Info on your rights and protections in a nursing home. Each State has their own rules and regs that conform to the Federal guidelines but there may be inclusions and even ommissions you'll find.  One big ommission in my state, Missouri, is the lack of Family Councils which was provided by the 1987 Nursing Home Reform Act (more on that in another blog).   great resource about starting a Family Council and about the culture change provided in the 1987 NHRA where the change is directed from being institutional care to personalized care and self directed care in SNC's along with Family Involvement in the Nursing Home.

Missouri Coalition for Quality Care  or  Nursing home violations up to 2011 (a little behind) Each state may have a coalition; don't have time to check out that possibility. This is actually a part of Eta Sigma Gamma and some chapters have Student Ombudsmen (more on the Ombudsman at another time)

Thursday, April 18, 2013

Mom's Moving ... No She's Divorcing... Her Delusionary Husband

It's happening again. Mom's moving. Not to another SNC but "Lawrence" (the man she recently married in a hallucination/delusion) is coming to get her and move her out and away. Her "knight" is coming to the rescue.

Then a few days pass and he's a horrible person who's having an affair with her (totally bedridden) roommate or who was married when he married her and she's getting a divorce. Mom moves in many different directions these days. Her life is life a soap opera but she hasn't watched TV for months.

I don't believe Lewy Body Dementia is the origin of this particular "storyline" with all it's variations and nuances. It's exceptionally detailed; always providing "answers" often days later when I've had questions or made comments responding to Mom's remarks that leave her without an answer. It's interesting how Mom's "new remarks" coincide with visits from JH.

Yes, Mom is coherent on many occassions although in the last week she's had more difficulty finding words and expressions and sometimes her conversations are full of going off on tangents and partial subjects. We're in another transition; another part of our journey with LBD.

Mom often mentions "the woman" and refers to her as "a Nurse" who she "trusts" and who always seems to have "answers" or provides specific information. The most recent was telling Mom she knew how to get a divorce that didn't cost anything and could be done quickly. Hmmmmm.  A divorce for a hallucination/delusion? 

I consider all possibilities. Perhaps someone working in the facility is thinking she's "helping" by giving Mom this "input". I've spoken to every Nurse and Aide and each one says they redirect and try to get her on to another topic not encourage the anger and hostility or upset by adding to the hallucination/delusion.

Going along with delusions/hallucinations to the point of encouraging development and specific direction is not in any materials I've read about how to handle delusions and hallucinations with Dementia, especially Lewy Body Dementia. Since Mom gets upset, worries, becomes angry and lashes out at caregivers and others, someone who handled a relationship with her in this way is causing more harm than good. An RN, which JH is, the woman who's been in our lives as Mom's "friend" and who has used Undue Influence, knows better.

My concern for the past few months watching this "soap opera" from around Christmas and continuing almost four months while being interspersed with times when Mom "forgets" about the "soap opera" and redirects her attention to attacking me, is how long and how varied the story has become.

A couple of days ago the "plot thickened" and Mom was adamant she needed to prove she was a "good person" and had no debts and to do this she needed her Social Security Card and photo ID. She also wanted to keep a copy of a Deed to a small piece of land (smaller than most homes are built on) which is landlocked and originally belonged to her Mother; land Mom had given to me many years ago as her only child and because she wanted to "keep it in the family" and she also didn't want to pay the yearly taxes (small as they are).

Let's see:  SS and Photo ID.  At one point early in 2010 when JH was just beginning to "befriend" Mom she made a Dr's apt for Mom for an eye exam when I simply asked her if she knew of a good eye Dr. JH sent me an email letting me know the time and day she made the apt (her convenience, not mine) and wanted Mom's SS number and her birthdate. 

Today, I'm wiser and sadly no longer have my husband's chronic and critical medical condition 24/7 uppermost in my mind as he's passed. JH played her game of preying on the elderly like the Tennis she's excelled at for so many years, watching for her opponents weakness and using it to her advantage.

We're more evenly matched, now, JH, and I see more clearly how deceitful you are. I've found the Lewy Body Dementia Association and succeeded in getting a diagnosis of LBD. Today I have resources both online and locally to help me understand Dementia and living in a Skilled Nursing Facility. Today I have the research I've done on JH and put together the puzzle pieces realizing her actions reflect those of an elder predator and in time she will make that mistake that will finally end her ability to abuse the elderly.

Today we ride the train of broken dreams together, Mom and I.  We've ridden it before and we've supported one another and survived to greet another, better day.   Mom's dreams are now fantasies often called hallucinations/delusions in the elderly.

We are three generations of women who stand together, stand with one another and support one another.

It will eventually be game, set, match for JH; a woman who still loves to play competitive tennis where the name of the game is finding your competition's weak spot and keep driving the ball faster and harder in that area.

We've begun playing on a different court, new rules, and, we have better equipment.

JH, you're outmatched.

Thursday, April 11, 2013

What A Difference A State Investigation of a SNC Makes

State Investigation reminded me how useful an Internet tool can be to find out more about the financial workings of Not For Profits. has been a major tool I've used in the past few years checking out local and national Not For Profit Organizations. It helps you determine where to place your hard earned dollars to really benefit those in need of various types of charitable support.

Mom's SNC is a part of an almost annual $50 million dollar enterprise system or "business" according to  That's a yearly amount of income and almost all of it comes from payments made by residents to the facilities owned and operated by the NPO with a smaller amount collected through services provided.  At least that's what their 1099 shows on for 2010 and 2011.

Top or "key" executives of one arm of the organization, which also supports several "subsidiary" organizations, are paid salaries claimed to be commensurate with "business" standards. These salaries are in the $300,000, $200,000 and $100,000 plus range. The very top people even get their Country Club memberships paid for just like their contemporaries in the For Profit business world.

The difference?  Income into this organization comes from Medicare and Medicaid primarily with a few "self paying" residents. Rumor has it the organization wants to go all "private pay" with a few beds allocated to Medicaid; imagine that would keep their high paid executives salaries out of print and probably even higher.

What about another reporting classification for all providers of Skilled Nursing and other types of Senior Care mandating all of them, For Profit and Not for Profit had to make full financial disclosure annually? Might be a step in the right direciton regarding Medicaid and even Medicare expenditures accountability and shift the "blame" given to recipients to possibly the real "abusers", those who receive the funds in payment for services rendered -- or said to be rendered.

Don't know about you but I'm continually hearing how Medicaid is draining our tax dollars and how there are so many abuses by the people RECEIVING the money directly. Seems like no one's investigating where the dollars being collected by Senior Service providers taking in Medicaid payments are being applied or not applied.

When do we get a full report? What are the exact standards used to measure Skilled Nursing Facilities and how can we ensure our loved ones are getting the services they deserve on a continual basis?

Wednesday, April 10, 2013

Mom's Skilled Nursing Center Given Weeklong Special Investigation by DHSS

Two recent deaths due to what is said to have been negligence and believed could have been prevented.

Various other violations of State Rules and Regs and Rights of Residents alleged and reported.

One death certificate cited "natural causes" after resident was dropped using lift mechanism, entered Hospice and died within about a week.

Yes, both were elderly, however both were in relatively good health prior to their "accidents" and both, we believe, suffered needlessly.
Sadly, long term care facilities are not automatic safe havens for our loved ones and it's critical family members and friends visit, advocate and even become adversarial when necessary to ensure resident's health and welfare.

Move Mom if it's that bad?  My oldest son would definitely respond that way, I'm sure. Medicaid beds aren't that easy to find and actually with the State involved, Mom's probably far better off staying.

I know after having visited every facility within a twenty five mile radius there just aren't any available places in facilities that are any better.

With Mom's Lewy Body Dementia, unless she was totally incapable, moving and adjusting could be very, very difficult for her.

If you're care giving a loved one in a SNC, you understand; if you're not, you should heed the warnings as many of us will spend at least two years, according to recent studies, in a Skilled Nursing Center or other Long Term Care facility.

Today the State returned to supposedly see how much had been done since their initial examination visit that encompassed a full week.

Word around the facility among family/friends is the report is approx eighty pages -- far in excess of usual reports and probably containing numerous concerns of varying degrees.  (Update: Actual report 85 pages and as of 4/25 still not posted on internet but available at the facility to read.)

It's been interesting to see how the SNC "snapped to" immediately following the first day of visit and requests that had previously been ignored suddenly being accommodated.

Other actions were being taken by the facility within days to offset remarks made during the various examiners observations and before the report was to be generated; trying to make "points" possibly and show the State they would "do better". 

The question, however, is how long this will last; family members who've "been around for years" have seen similar investigations before; perhaps, however, not quite on this scale.

Today when I re mentioned Mom's wheelchair had fecal material on the tag and on the cushion she used and the wheelchair's sides were broken, I wasn't ignored as I had been at least a dozen times previously.

To the contrary, within five minutes housekeeping came for the chair, asked what we needed, the chair was removed and to add to the real "coup d'etat", the previously inactive and non responding to so many requests Nurse Manager suddenly appeared with a replacement wheelchair.

Times past it would be hours if and when the chair and cushion were taken away to be cleaned, actually returned clean and certainly no "replacement" would have appeared in the interim.

Unfortunately, this service doesn't counteract last Monday's experience of forty minutes waiting to have Mom taken to the toilet and having the place so short staffed (oh, wait, there was a Nurse (LPN) standing around at the Nurse's station but that's typical; the shortage is in the real caregivers, the Aides). 

One dedicated Aide was trying but they had her running from one person to the next with several emergencies, trying to move Mom's roommate from her chair into the room and eventually into bed with a lift (which was never accomplished presumably because an additional Aide was nowhere to be found). 

The Aide, ML, was running as fast as she could and then was told it was her job to "pass snacks" -- something required by the State but until the State came in for the five days had never been a practice of the facility. 

So, with the passage of Mom blocked by the chair of her roommate in a reclining position, Mom having fallen just the day before -- if I hadn't been there -- would my Mom have fallen again trying to get herself to the Bathroom?

Wait!  "Grandma" or "grandpa" as some staff call residents should just "let go" and "do it" in her/his "diaper" as some have been told they should do.

Right!  Mess yourself; sit in it; wait for someone to notice the stench when they get around to possibly checking on you maybe hours later. Or, better yet, get a bladder or urinary tract infection and have it go unnoticed and turn into Sepsis -- the fate of one of those who died recently.

Strange how our society changes from one that encourages our children to learn to toilet themselves and stop making messes in diapers and then when we're old encourages us to mess ourselves because there aren't enough people hired or in place to help us to the toilet while we still can be helped.

And when we get to the point where we can no longer use a toilet, enduring the hours of sitting in our messes until someone grants us the privilege of changing us.

My mind goes to how many times a caring parent checks the diaper of their precious little one to ensure they're changed to prevent diaper rash or other infections. Why don't we value our elderly this same way?

This is what we all have to look forward to. And we wonder why no one wants to go into a facility?  

This is why my Mom accepted so easily the story we believe was invented by JH about Lawrence, Mom's acquaintance from years ago, the "white knight" coming to rescue Mom and take her away from this less than life valuing lifestyle.

State Review of the facility isn't all that's needed. The State needs to review its own policies, procedures and standards of operation when it comes to reports to their Hot Line for Elder Abuse and the people who make decisions, those hired as quasi social workers in the DHSS to investigate reports; the people who need at the very least a GED (NOT A COLLEGE DEGREE; NO MSW; NO LICENSED CLINICAL SOCIAL WORKER designation) and a couple of years working in some form of "public" contact (fast food or retail will do).

To add to the level of questionable competency, with one year and a few extra hours of training,we now have an "Adult Protective Care Worker". That's in our State; check out your State's hiring policies for APW's and DHSS workers; it's eye opening to see who's making life decisions for adults with special needs and our elderly. More suggestions on this subject later.

A CHALLENGE:  Make time in your day at least once a week to visit with someone in a Skilled Nursing Center; take them for a "walk", read a newspaper or magazine article to them. Bring them into today's world; they mostly live in their memories but they deserve to live alongside each of us. After all, your time is coming faster than you think and if you don't value their lives today, who will value the quality of life you have tomorrow, when you need it?

Tuesday, April 9, 2013

Where Are We Going & How Will We Get There?

Written April 9, 2013 and set aside:

How long have we been traveling the road of Lewy Body Dementia? 
Since the "diagnosis"? Years before?  When is LBD, LBD? 

I've read so much over the past many months since Mom was finally given a "preliminary" diagnosis of "possible LBD". In the LBD world, that's as close as it comes for most living human beings: "possible" or "probable".  

For the very aged, like my Mom, only with an invasive die injection and MRI or an autopsy can a more definite diagnosis be given. It's important medical practioners know the diagnosis of "possible" and "probable" are diagnosis and should be cited and referred to when making medical diagnosis/prescriptives.

Unlike Cancer or Heart Disease or other "medical afflictions", LBD is more of a "mental disease" and we're as unknowing about the human brain as we are about outer space as far as the intricacies, complexities and realities.

I've watched as the LBD Association and others have provided "new" information based on observations and growing experience. This once thought to be rare disease is quickly becoming the challenger to Alzheimer's as the most prominent type of Dementia or at least coming alongside as equally important.

My oldest son still doesn't believe his Grandmother has any "real" mental challenges even with her most recent delusion of having gotten married to a man she'd met as a teenager over eighty years ago and not seen since; a man the Census lists as deceased for over twenty years. Oldest son can't grasp this disease's variations and length of impact on the individual and the caregivers. 

It took my youngest son almost two years to believe his Grandmother had significant mental processing problems; unsure if he understands how far back these challenges really go. Lived through many painful episodes trying to convince him with the limited amount of material available Gma needed more testing and diagnosis. He had the POA; JH, whom I'll write about in other entries, had Mom remove my POA of many years as she worked to gain Mom's confidence and trust so she could use Undue Influence.

My daughter lived with us and with her Grandmother during years when Gma was really changing mentally.

Daughter recalls incidents she did not relate to me that are now clearly the work of a mind growing more and more incapable of reasoning, rational thinking and consistent accuracy with daily skill sets. Incidents that clearly show an inability to reason and a willingness to make decisions irrationally and led to her being highly susceptible to JH's manipulation and control.

One of the principal components of LBD are the hallucinations/delusions.

Mom had "visions" of people outside our house in early 2010, people dressed in clothing more early twentieth century and small town styles like where she lived growing up in rural IL.

When I think about it, there was an occasional remark about seeing something or someone even earlier than that but we always thought it was her eyesight as she had cataracts and macular degeneration. That was before we knew about LBD. Mom's nose ran constantly; sounds silly but this is also a "warning" sign about LBD. 

We also wrote it off to possibly some medications she was receiving or a urinary tract infection; those "write offs" came at the suggestion of JH, a woman who entered into our life while my husband was critically and chronically ill during the many months prior to his passing in January 2011. She's an RN; she specializes in working with elderly men and women with Alzheimer's and Dementia; she works by herself, only for private pay. 

Daughter and I believe she's an elder predator focusing on relieving the most vulnerable of cash and other valuables, ensuring she stays alongside them until they pass on or totally lose their mental capacities and can no longer shed light on her actions or activities. it really a delusion/hallucination?  This "marriage" of Mom's to Lawrence? Daughter and I believe it's not.

Our research doesn't support d/h's that are as complex, have intricate and changing story lines and that seem to wax and wane and always have a central character somehow involved that's developing the story -- a woman. The woman has different "roles" she plays: sister, Nurse, provider of goods and services, but most of all, "trusted advisor".

I'll tell the story in a later Blog entry; it's fascinating and if we didn't have to live it we probably would have had a good laugh about it because it sounds so "funny" for someone to believe all that Mom has told us.

It's also sad and very maddening because the story also includes their "divorce" and his "already being married to someone else" and more.

Daughter and I see this as cruel and unusual mental punishment and not a self generated hallucination or delusion attributable to Lewy Body Dementia or any other type of Dementia. Manipulating the life and emotions of someone as old as Mom is despicable and sickening in my opinion.

LBD by itself has enough challenges and fluctuations to make the average person want to run away as fast as they can because you never know what mental or physical state your loved one will be in or may lapse into during time spent with him/her. 

Having someone who, it appears, is causing more challenges and fluctuations that disrupt relationships and cause more disturbance in daily living appears to be done to separate the support of loving and caring family members to ensure complete control and manipulation and that is a sick way of living, in my opinion.

This Blog gives me a voice beyond the small circle of people involved in Mom's life and daily living.

It gives me hope, a purpose and a means to encourage Baby Boomers and all ages to look, listen, learn and prepare never to let down your guard under any circumstance.

It gives me a voice to be heard by others to warn them to realize when you are most vulnerable is when you are most likely to be taken advantage of in ways that will attempt to destroy your life and your relationship with your loved one.

This Blog helps to get the word out about the real challenges of living with Lewy Body Dementia before, during and after the diagnosis and ways to survive and thrive making this end of life journey livable.

And, finally, provide information on how to unite with others to provide quality of life for our loved ones who must reside in a Skilled Nursing Facility through forming Family Councils or Alliances where friends and family caring for loved ones act together as a group and individually to support and when necessary, defend, those who cannot speak or act for themselves in ways that provide self protection and self determination.

Monday, April 8, 2013

When The Child Becomes The Mother

Lewy Body Dementia has been trying to destroy our family.

It's making great progress with the help of people who chose not to see or accept the reality of this destructive and devastating terminal disease.

Fast forward with a step backwards. Spent four hours with Mom from five to nine last night. Had a phone call around 1 PM, it was a Sunday, alerting me Mom had fallen in her bathroom at the Skilled Nursing Center (SNC) where she now lives. Was working and couldn't get to her; made sure she was not injured and held my breath wondering what I might really find when I arrived.

Falls are common with LBD as the body motor functions and mental functions do not always work together at the same time. Her feet "stick to the floor" (which Mom blames on her "new" shoes; slippers she's worn for many months) or arms do not support the shift in weight from wheelchair to commode (and she definitely will not ring for help; they take too long; they're too critical).

The reality is the brain's messages do not always reach their intended functioning part while the brain believes they have and so an "accident" happens because the body generally moves to some degree but not with the support or ability it should have.

There are many reasons for her refusal including the most obvious: Mom wants to retain control of the basic parts of her life and toileting is one of the most basic. The diminishing ability and the frequent loss of bladder and bowel function that has been more and more prevalent is probably a sign of more significant physical changes internally. We've noticed some patterns and try to watch for related developments/causes.

LBD and Dementia raise the level of risk taking we tolerate/allow in our loved ones to try to give them as much "personal freedom" as possible. So very like holding a child's hand when crossing a street and eventually turning loose believing they'll be cautious; turning over the car keys for the first times.

With a child there are so many "firsts" and so many "what if's" gone through with children as they grew up to look forward to. With the adult "child" going through Dementia we don't look forward, welcome or anticipate these changes. Children become more independent; adults become more dependent. 

We're on a backwards, not a forwards journey and we travel on a roller coaster. Some days, even some hours, change and fluctuating abilities cause sheer exhaustion on the part of the care provider. You never know what "age group" you're dealing with or what "level of ability" is actually present.

Last night Mom talked nonstop; knowing the family history so well I heard years and events mixed up, run together and totally opposite from what we'd experienced in the many years we shared together.

She didn't recognize me and so she talked to me as though I were someone else. She was not at all happy with "me/her daughter" that evening so this "person" heard about all the "bad things" her daughter did to her and continues to do to her.

Swallowing my pride many times over I listened and allowed her to "rant". My concerns are the uninformed attendants and those "examining" my Mom who don't know the real family history and actually believe these distortions and twists of reality. That's where understanding Dementia and especially Lewy Body Dementia are so important.

It was rough. Sitting there and having her negate our lives together when we'd spent almost forty years as a multigenerational family. I know I'm supposed to "redirect" her but even when I told her who I was she would remember for a while and then she'd forget and we'd be "off and running" again.

As hard as it was to sit there and be verbally abused, I felt perhaps she needed to "vent" and blame me for her being somewhere she'd never wanted to be, a Nursing Facility.

My problem has been workers in the facility and even others I've encountered along this walk on the LBD pathway who listen to Mom and believe what she says accurately describes her life and realtionship with me. It also doesn't help to still have to tolerate an abuser who continues to visit my Mom and who I can't stop from seeing her; a story for another entry. It's a nightmare that's worse even than LBD.

Mom inserts words with no relationship to what she's talking about and when one time she realizes her mistake, laughs and covers her mistake by saying how silly she is and how she's just getting older and sometimes her mind just doesn't work as well. Of course, she also believes she recently married a man she hasn't seen for about seventy five years who was just an acquaintance.  Another time, another story....

She sleeps... a lot.  She needs help cutting food into pieces but as she said last night she didn't want help because they cut it in front of her. She lets me and my daughter do it for her but someone else doing it, as she said, is too much to bear...not being able to do it for herself. 

She needs clothing paired and not too much in her room or she can't make a decision on what to wear and spends the day dressing and undressing. This is a real challenge because she's started soiling and wetting her clothing and if I don't visit almost every day she ends up having very little to wear.

She has "tantrums" where she suddenly gets very angry at others; I'm a prime target.  She cries and "whines" about many things and then suddenly she stops and a few minutes later can be smiling. She's somewhat incontinent; it varies but it's becoming more and more consistent; she forgets to put on her "paper pants" and she wipes herself and then uses the toilet tissue as a washcloth on other parts of her body.

This "obsession" with washing has come on in the last few weeks. I've found her stark naked many times in her room or in the bathroom. She might have had a shower that day or not. She may have already "washed" for that day or not. But stripped down, often without clothing in sight.

Sometimes I've entered, stood aside and watched as for fifteen minutes or longer she starts washing, gets distracted by something (usually it's something she talks to herself about or to her "imaginary friends") and starts all over again time after time after time until I announce my presence and interrupt the endless repetition.

Last night after finally convincing her to eat the food on her dinner tray set in her room because she'd fallen and didn't want to go to the dining room, placing the towel she wanted as a "bib" around her neck and one on her lap, I convinced her to eat her dinner.

Another Lewy Body Dementia "sign", the tremors in her hand cause many bits and pieces she finally manages to get on the soup spoon she usually uses to feed herself to fall everywhere. 

After tearing her egg salad sandwich in half and turning away to reach for something, I turn back to see her with half a sandwich in hand using it as though it were a bar of soap and rubbing it all over her other hand and arm, switching hands and doing the same to the one she'd originally used. 

What a mess!  I've learned not to "react" to these totally incorrect actions but egg salad isn't exactly easy to control as it drips and drops all over the tray, her and the floor. 

Mom didn't even realize what she'd done but when she finally felt "wet" and "sticky" she asked why and when I told her what she'd just used to "clean herself" wasn't soap but the sandwich, she laughed and just went on to eat and continue talking -- often with her mouth full of food.

Mom shouldn't dine unsupervised but the facility can't seem to understand or doesn't want to (more later about the financial gain of SNC's in not fully recording or evaluating various physcial and mental needs) because some days Mom's behaviour seems quite "normal" even if her ability to self feed is compromised.

My Mom. My amazing, self sufficient, "rock", my life who held everything together and who was my pattern for becoming the woman I am. She's slowly disappearing and I'm focused on learning where this road may lead so we can both walk down it together, supporting one another as we always did.

So hard to watch; to listen to; to talk about. So needed to share this journey which others seem to pass by and not discuss perhaps because it's so "personal".

Specific descriptions of behaviour shocking? Not "polite conversation"? If only someone had told me exactly what could happen even these "non polite" situations would have been less shocking and could have been handled better. Mom's facility doesn't "share" this information; I have to see it to know it's happening.

I see sharing these most challenging behaviours and experiences as a real guide. A guide to living with and surviving a loved one's journey into an abyss so dark and tumultuous that any light provided slows the descent and adjusts the turmoil for those who are slowly being left behind, in the dark and without the amazing person who's shared their life and their love. 

Mom continues to teach me as she always has. The only difference is the child is now the mother in so many ways. Adjusting, finding ways to understand and believing tomorrow will bring a better day when today has drained me through work, caring for Mom and continuing adjustment to becoming a widow, is why I'm starting this Blog.