Friday, November 18, 2016

Advocating Mandating Transparency, Access to General Information & an Open Door Policy in LTC's

Reopening a door of a group I began ... 

Envisioned and recommended by Federal and State regulations, Long Term Care facilities must have a Resident's Council and should also have a Family Council.

I planted the seed, worked on the foundation and then, because Mom passed, was no longer "eligible", or so I was told, to attend meetings of the Family Council I worked to begin at Mom's last facility.

However, telling me "not" to keep doors open, to ensure care of our growing older population many of whom do not have the ways and means or the capacity or capability to advocate and speak out without fearing repercussion (yes, it still happens), only focuses me on finding another way -- closing one door, I look for another, shutting it, I find a window of opportunity and use it.

We must keep the doors of the LTC's open for everyone including Caregivers and the General Public. 

Today's population and tomorrow's, which may include you and me, have lives that depend on our vigilance and diligence.

Today, many of our oldest residents do not have immediate family members nearby or have outlived them.

Who among us will be their voices? Who will be their advocates? 

Most important of all, what rights do we have and what are we given to provide this vigilance and due diligence?

There must be a change to the second group being a "Family, Caregivers and Friends" of residents in LTC's and not just limited to "Family".  

Limitations are loopholes.  Limitations can endanger.

Although LTC's are "private businesses", either For Profit or Not For Profit, they should be subject to more transparency, access to general information affecting decision making for entrance and for continuing residence of individuals.

We live in a highly computerized world where compiling information to make informed decisions can be far more easily assembled and updated.

Yet within the LTC community, mandates to provide, share and maintain records allowing the general public to know the "product" being received is the one consistently provided is not being seen as a priority.

The welfare and well being of human beings should not be solely delegated to individuals and businesses who have round the clock access to individuals of varying mental, physical and emotional well being. 

HIPPA is always used as a reason for NOT providing information. 

HIPPA has been "redefined" by these entities for their own benefit while not adhering to the real basis of the law. 

This is not a request to share specific information on any one individual or identify that individual. 

It is a requirement to provide more specific information already required by many agencies and departments with the general public in a format that is easy to read, easy to compare.

Caregivers and members of the general public who express concern and interest in ensuring the rights of a facility's population should have the ability to attend more than just "public presentations or gatherings". 

Limiting meetings to "family members" and not including others who could benefit or provide significant insight to general purpose meetings removes potential support, positive input and questions leading to changes or additions to benefit the community.

So, when I saw the posting in one of the elevators about a meeting whose subject was "Dementia" and a presentation on more than just Alzheimer's, I had to attend.

The main presentation was by a young RN who had just been promoted to a level of supervision. She started at the facility shortly before Mom went into her final weeks and eventual death. Dedicated, caring and wanting to make positive change. I wonder how long she'll last?

I'm still saddened by what I see at Mom's last residence in so many ways.  There seems to be a surface attempt to "meet the requirements" on a base, minimal level. 

We attended a program a few nights before of a group of residents who sang songs for a handful of residents, friend and relatives. An attempt at music therapy limited to songs the residents "knew" from earlier parts of their lives and a "kazoo" addition to one song.

Where are those who can still play a musical instrument? Does anyone ask? Does anyone care? 

The friend we visit has been taking piano lessons over several months; her abilities aren't great but someone sitting at the piano with her and helping her to go through a simple song would add variety and encourage others to try.

There's still minimal involved attempts to work with residents to maintain skills and abilities. 

New faces surround; familiar faces have passed, all but a very few. Turnover is as frequent as the staff. 

What they have in common is trying to survive a system that is difficult to change, hard to get through to, and impossible to understand.

The current Director's door was open in the first months after she arrived.  She was a welcome change from the previous Administrator who "zoned out" with family members promising to take action and seldom following through.

Today as has been the practice since a few months before Mom's passing, the door is closed, the Director is seldom seen on the floors, does not appear at "family and friend" events and basically has disappeared from contact and connection as she has ascended into a higher position in the heirarchy of the organization from Administrator to Vice President.

Interesting how those "ascensions" separate the person who should be available to residents, caregivers and others to needing to connect through others to gain access. 

Does this reflect the challenges we have as consumers to "get through" and "get past" the walls built by organizations, Not For Profit and For Profit, in Long Term Care facilities?

Keep knocking, keep going through all the doors and start or continue to advocate through emails and activities specifically designed to bring to light the changes needed, the actions that should be taken and the ways each of us can protect today and tomorrow's Seniors -- each of us.

Monday, October 24, 2016

Are Long Term Care Facilities Obsolete?

Another "residence" for Seniors is going up on a corner in a very busy section of our town.

Down the highway, within a few miles of one another are three more "residential" or "continum care" communities.

"A Place For Mom" cites 50 Assisted Living, 33 Dementia Care facilities and I'm still researching how many Long Term Care Facilities there are in my area -- check out the DHSS for your state to get your info.

Many advertise as being "Assisted Living" and "Memory Care" -- that last one is the polite way of saying "Dementia Care"

The figures above do not include the many new builds popping up around town or the expansions of existing facilities.

The more we're willing to move out, move on, the more will be built. The less we educate ourselves and others about how to adapt and reconfigure our homes to accomodate aging, the more we'll "need" a "facility".

I find this dynamic growth in building and expanding interesting since Missouri proports to have a practice of helping Seniors and others with limitations and challenges to continue to live in their communities or return to the general population through their program known as "Money Follows The Person".

Even if you plan ahead, even if you "have the money", few faciliites provide the level of quality and service you're sold to exchange your property, your home, your savings, for the "guarantee" you'll always have a place "to live" once you reach the level where you'll need more "personal attention" and "monitoring".

MY ADVICE:  Tour the Long Term Care portion of these facilities first and do more than a walk through.  Attend daily activities, read their State Reports -- none are required from Independent Living, Assisted Living and even some "Dementia Units". The laws regarding even the low level of transparency now practiced only applies to "Nursing Home or Long Term Care Facilities".

CAUTION:  Continuum of care is the next challenge to our economy if we don't ensure residences for those with medical and/or physical challenges, including low functioning individuals are more protected, we will have a crisis on our hands we've not seen since the School Crisis was brought to light.

We are living longer, many are living with better health or monitoring by family and friends. 

Perhaps more should consider multigenerational living. 

We did. It worked because everyone was a part of the family, was appreciated and was respected.

Those are the foundation blocks on which families are built and succeed.

Friday, August 12, 2016

Help Is Only Available In Certain Zip Codes; Get Pregnant To Get Help

Government and private organizations claim they're there for you when you need them.

Once inside their doors, you find mostly lip service and very little real assistance.


Each one has parameters, limitations, scopes and directives.


In plain language that simply means they don't have the time, the money, the staff or whatever to help you and me when we need it.


Everything's on the internet, you're told


Finding the correct site, the one that applies to your situation, going through all the steps and then discovering you have to submit a form, make a call or visit in person with specific materials that may or may not qualify you ...

All at a time when money is most likely very tight, time is not available because you're care giving a person who may be mentally and/or physically incapable or incapacitated (let alone two people as I was doing) ...


Money goes quickly when no one can work because they're 24/7 caregiving for two loved ones and their needs surpass the "allowances" given by agencies and programs that might be available FOR a very limited time AND to a specific level or amount.


There's help, all you need to do is reach out and let us know ....

Really?  Where?  One visit to "assess" someone by your organization? 


Then you're told if you're "being considered" by one agency, you aren't eligible for being considered by another. You'll have to wait and see. WAIT AND SEE????  

The need is now. The challenges are getting greater. 

What and where is the help, the assistance for someone who's found themselves in a life situation for which their "self supporting never asking for anything" life has not prepared them, not provided information and does not include "knowing the system" or "abusing it" as they were taught so many choose to do. 

When Seeking Provision of adult pads for incontinence.


Was told to go to the local Area on Aging who had allocations for this purpose. 
They'd gone through the money set aside for this purpose; it was August.
They didn't know anyone else who made them available.
Great! 

Don't like to compare in this way but babies and infants have the same need and yet there are organizations set up specifically for this purpose. 

Why don't we recognize there are others, the aged and those with physical challenges, also in need of these supplies?

When Seeking Help understanding Mom and trying to provide the best personal and medical care.


Feeling there was possible Alzheimers. 
Had no idea there were various types of Dementia.
Went to the Alzheimer's Association. 

Interviewer said AZ could not be fully diagnosed without an autopsy --- this was 2010, times have changed somewhat and some Doctors will provide a diagnosis and there are new ways to scan the brain and look for this possibility -- that is "if" you can afford it, "if" the insurance covers it and "if" the person agrees to having the procedure. That's a lot of "ifs"

Second Visit to Alzheimer's Association and another conversation with another "representative":

I'd discovered there were other types of Dementia.

Found what little information there was on Lewy Body Dementia at the time because Mom's symptoms didn't match Alzheimer's but they did Lewy Body Dementia.

"Counselor" didn't know about LBD. 
Suggested books and pamphlets. 
And around in circles we continued to go as we spent precious time we didn't have and money we barely had to try to get help for our loved ones.

Interviewer listened to my pleas for help and concerns about Julia H. 
Guided me to books and pamphlets. 
No other direction.

What help was that?

While I tried to care for two adults at the same time, daughter realized help was only going to be given through our hands and so she quit college. Junior year. 


So much potential. She'd achieved so many awards and opportunities now shelved as she dropped out and looked for minimum wage jobs, all she could qualify for, while helping me with the growing needs of two people needing highly individualized care giving.

Institutionalize them?  We couldn't. We didn't see the path ahead and all its challenges for both of them. It's not that clear when you move from day to day and you're told "if he gains enough weight, we can go back in and repair and close the opening(s)". And, with Mom, it was "all older people have these times" and "she's doing so well for her age". 

It's what they don't tell you, what they fail to tell you and how they do not come alongside with anything more than verbal remarks, comments and not even specific suggestions.

POSSIBLY BECAUSE WE ONLY HAD MEDICARE for husband and Medicaid for Mom?

We are so uninformed as a society as to the reality of what is and is not covered by these two plans. 

We do not know what is "allowed" and what is "covered" and where and "for how much".

We live in "The Greatest Country On Earth" and we truly have the worst, the least and the most secretive medical system where the only way you truly know, on government "provided" health care or individually purchased, what's included, what's limited and what's not allowed is when you actually need it and are provided with a service that's less or none at all and question the Dr's "recommended" procedure for your needs.

Did you know many times these "recommendations" are based on what the Insurance will cover and not on what would best be done?

Savings gone. Part time jobs with no guaranteed hours and no guaranteed income,
daughter tries to get us help by personally visiting a government agency seeking assistance including Food Stamps.

They could offer nothing. They suggested she try a food bank. 

Do you know what else was recommended? 

If she was pregnant, she could get support and assistance. 

Yes. That's correct. She was actually being advised to get pregnant out of wedlock if she wanted "help". Then, she, at least, would be taken care of. 


How demeaning and demoralizing can we be as a society to see this as a solution when all we asked for was a little assistance to get past these challenging times we truly believed were surmountable and would end positively.

This amazing human being is trying to help her family and she's told -- have a baby, bring another life into a home struggling to overcome medical and financial challenges.


She and we "lived in" a home located in a zip code that wasn't considered "within the parameters of programs that were "designed", we were told, for defined parameters/zip codes.


Health challenges know no boundries. 

There are no Counties, Cities or areas where you can live assured what happened to us, what happens to others, cannot happen to you but there apparently are "lines of demarkation" when it comes to assistance either publically or privately.

This story happens every day. It may be slightly different but it's happening as I write and it will continue until we realize and recognize neighbors, friends and relatives of all ages are just steps away from impending disaster. 

We have survived. We are making it. But why did we have to make the journey in this way that would take so long and almost destroy us on the way?

Wednesday, July 27, 2016

Fault Finding Journey With My Family and Others

We have people in our lives who believe we've had the experiences we did because we failed in so many ways.

They've not faced the storms of life where all you can do is hang on and survive the moment for however long it lasts. 

They've not had challenges where you could see no end in sight and where multiple "waves" of more challenges come forcefully at you as you struggle to survive.

Those who are fortunate, who have never had multiple continuous adversity do not understand how fortunate they are. 

There are parts of life that take longer, provide more and continuing obstacles and require continuous survival actions. 

People do not always create or have control over their lives.

The general consensus of many is "if you plan right, if you save enough, if you put everything in place" life will be easier and go smoothly.  

Marketing and advertising for all kinds of insurance and investments bombards us with this message in all media.

Dreams can become nightmares caused by life beyond your control and even beyond your foreseeing, planning for and anticipation.

We live life, the American Dream, believing tomorrow will be better. 

We try to take advantage of opportunities. That sometimes incurs sacrifices. 

Those of us who have learned theirs is not a life of "luck" but one of hard work and sacrifice realize the tide of life can bring in the beautiful sea shells on the beach and it can also become a Tsunami destroying everything in its sight.

We could have made different decisions. Of course. Especially with hindsight instead of being forced into the moment and expected to make an instantaneous determination -- as medical and other decisions often can be.

With real life, you have limited access to information, even in today's tech world, that is accurate and applicable. It's also a question of reliablity and where the gain can be realized by the person or entity providing it.

What some fail to see is the amazing opportunities and life we were able to provide not just for ourselves and our family but for others as we made decisions touching others in positive ways and giving outside of ourselves.

My philosophy, for what it's worth:

We should live believing in the beauty of the sunrise and the sunset and the coming day after the long night. 


Life involves taking risks, realizing opportunities and believing in yourself and those around you who you value and support.


More money would not have changed the devastating effects of actions taken by the hospital and medical care given my husband that began our nightmare journey. 


Medical costs and personal costs cannot be measured in dollars and cents but in what we give of ourselves throughout our lives.

Family members, friends and others benefited from decisions we, me especially, made over the years. They seem to ignore that part of the past they love to tear apart.

If someone finds fault with you, your life, your choices, look to what they want, what they need and why they choose to find fault. 

As I was taught many years ago, point one finger and look where the other four are pointing, right back at you!

Life isn't always according to your plan.

Saturday, June 25, 2016

Parkinsons: Sister Disease to Lewy Body Dementia

Muhammed Ali was laid to rest; his greatest battle was with Parkinsons, sister Dementia to Lewy Body Dementia.

They're all related, the Dementias; they are diseases attacking the brain, slowly reducing and often completely taking away capacity and capability. 

Some, like Alzheimer's are the robbers, stealing completely what they find. 

Others, like Parkinson's and Lewy Body Dementia inhibit, then limit and finally remove ability and capability while providing a battleground the strongest manage to wage war upon and fight until all the reserves, the remainders, are weakened or destroyed.

Praises for Muhammed Ali's fighting against the disease were given by those high and wide in society; from Presidents to people on the street. 

What isn't being said as loudly is this is a battle we should all be fighting, all be aware exists and should be fought on every street corner, in every group and organization and every individual home. AWARENESS. ACTION. ALIGNMENT.

Awareness. It's a disease; like any other it has a root, a basis and there can be actions and decisions made to conquer it as we are conquering other major life changing diseases like Cancer and Heart disease/problems.

Action. Realizing this killer stalks and preys on people who have been involved in sports involving hard contact with the head -- football, wrestling, soccer, prize fighting, to name a few -- and people with no history of exposing their bodies to physical abuse. Why? What are the similarities when there's such a difference in how someone chooses to live, to work, to play?

Alignment. Understanding Dementia is not a disease of age, it's a disease of circumstances we do not yet understand.

Causes? 

Like Cancer in the beginning we're just becoming aware there are many possibilities and potentials for "contracting" the disease -- maybe some genetic, maybe some lifestyles, maybe some environmental, maybe some we're yet to discover.

YOU and I hold the keys to this Pandora's Box through becoming involved in learning, observing and raising our voices loudly and long for more understsanding, more information, more realization that Dementia isn't relegated nor is it always "natural" as we grow older.

WHAT? WHEN? WHERE?

What can we learn and do with knowledge to begin to understand and eventually prevent the mushrooming cloud of Dementia from overcoming society as Cancer has done for so long.

When do we realize through sharing medical information, insights and conjectures, we gain a world where we can focus on living together more harmoniously and more equally.

Where will we go from here, from another loss of life to a group of Diseases that kill slowly and challenges the weakest and the strongest among us.

How will you live today and tomorrow? 

Will you live in fear or finding ways to learn, to combat and to eventually eradicate Dementia as we're working so long and so hard against many other diseases.

Your future is in your hands; the future of those you love and care about depends on your choices.

Wednesday, June 22, 2016

Time In A Bottle

A song from earlier in life, "Time in a Bottle" comes to mind ...

when I think about daughter and my experiences many Saturdays going to local Garage and Yard Sales...

It's become a ways and means of getting out, getting away, spending very little, usually a couple of dollars on an item we'd spend far more on in a store ....

while gaining a different perspective on our lives.

We see other people's lives set out on tables, displayed throughout homes they live/lived in ... collections, mementos, decor, clothing, items of everyday living....

It's been eye opening and healing to see--

There are others -- out there -- who've lived similar lifestyles, bought styles and items others now see as "worthless" and without merit -- especially my oldest son (yes, still a thorn in my side, unfortunately).

Why did I and do I allow this adverse influence to negatively affect me?  

Is it common for Mothers to continue to bear the challenges inflicted on them by grown children who have yet to mature or who may never reach that maturity where others are as important as and often more important than "self"?

Time has personal healing properties and I've been travelling the road of re-establishing my personal worth beyond oldest son's evaluations of me. 


Children . . . some never seem to completely grow up.

It's through my working to reinstate myself in the world and revaluing my self in my own eyes and not looking at the glass as half empty and not needing this son's approval, his favor, that I continue and know change is inevitable even if it's not in his actions, words or deeds.

Eyes are opened when you walk in the homes, the lives, of others.

There are the 

"weeders" -- those who've decided to sell unneeded or grown out of items -- mostly families who've moved past children of one age and not planning another "addition" so they sell to acquire, usually, for the next stage, the new levels of wants and needs.

"participators" -- those who get into a garage sale in their neighborhood or "try one on" to see if they can "move, get rid of, dump or sell" items they no longer want, need or may have as a part time business and a garage sale is an additional market.


"life changers" -- something is happening in their lives; they're moving to another location if they're younger or downsizing if they're older; or, sadly, a loss of one or more residents of the house, the home, where memories remain after items are removed OR like us, struggling to make ends meet and finding items they can "do without" or find no current use for to attempt to sell in this way or others.

Occasionally, as a recent past weekend, you walk through a life you don't know for certain but believe a catastrophe has occurred because of what is "left behind", what remains.

There are items from all family members, including children. Not items usually "given away" or "given up". 

We don't ask. We don't overhear any comments. We just "feel".

Items of little marketable value and not disposable or "get rid of" are what we usually find at the yard and garage sales. 

Then, there's the items that should be tossed or given to a secondary market (charity stores) but usually the "owners" have some attachment or need to try to make some money and so try to sell, often way above the worth of the article, at a garage/yard sale.

What's been helpful as we've moved forward with our lives, and especially to me as my oldest son has found so much "wrong" with the decisions we made, his father and I but mostly me, to purchase items for ourselves and our home is finding out how many others in our "age group" made the same choices, collected the same things, decorated in the same ways.

I remember having garage sales, one of many ways we tried to raise additional money when we were struggling to provide just the basics and pay the bills

Every quarter mattered and every dollar was carefully totaled adding to another ability to pay a bill or survive a little longer at the base minimal level we'd arrived at.

Care Giving is costly. It taxes your body, mind, spirit and finances when the person lives directly with you and when your means are not sufficient to provide the life they deserve, the life they need.

I wouldn't have lived any other way; I regret not one moment, and would do it again, willingly. 

There is no price that can be placed, no personal losses too extensive when a child, spouse or parent in a family needs you to be there for them in times of medical and personal challenges.

What was not needed, what was extremely harmful, were the suppositions and allegations of a family member and of an outsider, someone who was never a part of the lives of the family, who decided they "knew best" and that included acting in harmful, deceptive and what most would consider illegal ways without concern or care for the family unit they were affecting, the lives they were altering and changing -- forever.

This blog aims to enlighten, to share, to provide insights into the challenges and possibilities and to compare the footprints of generations then and now of individuals and of cultures who accept and who nurture throughout the lifetimes of their members.

To shine the light on realities and harshness; 
To benefit through knowledge and awareness; 
To give hope and to provide insight gained ...

as we continue to travel the road of moving onward with sometimes standing still, sometimes falling backwards and always picking up what's been dropped, what's fallen aside, what needs to be carried onward while leaving behind what should remain.

Let our footprints in the sands of time remain deep and clear and when we choose to pick up and carry someone for a distance, let's remember we are walking in bigger footsteps and being carried ourselves.

Friday, June 10, 2016

What Am I Doing? Where Am I Going? I'm Not Used To Having So Many Choices...

It's quiet this morning. Birds are singing and I'm listening to NPR and feel a large amount of calm, of peace and of self determination.

I can't remember having the choices I have today for many years.  Certainly not for the last five plus years since my husband's passing and the last two since Mom's and for the years before that as the path we didn't see was being set before us in Mom's growing medical challenges -- what we now see as the declines of Lewy Body Dementia.

We're moving forward. Daughter is being transitioned from a minimum wage job to a position where she can actually grow and become using her gifts and talents. An actual career path -- a long deserved use of her capabilities and abilities rather than just a "job", a place to go to "work".

I'm changing from a job that was causing me significant stress and was a dead end failing to acknowledge and use my skills and abilities but put a little food on the table and helped to pay other bills while daughter went through a special training program.

I understand holding on and making do. Working together, we not only survived, we're regaining lost and misplaced parts of life.

I'm focused on restarting my life in a familiar area where I'd spent a great portion of my professional life. I've started the journey and the path seems to be widening and far more sturdy and extensive for my wants and needs.

I'm exploring other opportunities and possibilities. We have the privilege of choices, now. We work together unifying and strengthening our individual selves and our family unit.

People generally don't understand today just as they didn't when my Mom came to live with our family about multi generational living. Millennials may change this mindset; Baby Boomers haven't been able to break the mold even when parents could greatly use this way of living.

It's not a new concept. Look around and see how other cultures value their populations from birth through all the stages and ages. We, in the United States, isolate and violate our elders through cutting them off, isolating them and then spending billions on the "challenges" we create.

Oldest son tried many ways to break us apart. He's focused on his sister and tried to "reason with" her to move out, get away, claiming I would "destroy her" like I destroyed him. 

Daughter has inner strength. She understands his choices, his actions and his decisions and witnessed how he negatively affected her life, our lives and his own. She's not his "little sister"; she's a wise and capable person in her own right, much to his distress.

It's always interesting when I hear adults who've lived on their own, who've made their own decisions for decades, claim their lives' challenges and problems were caused by others, especially a parent or parents. When you look closely, you see a pattern they set, they evolved and they decided early on and who continue not to be capable of changing those basic instincts and actions.

Daughter encourages; oldest son discourages.

Two supporters , one son and one daughter, and one distractor. Who should I listen to?

My Self. I continue to be capable. I welcome input. I make choices and decisions and do not cede this authority to anyone who has their self interests above what is my interest.

I'm exploring and finding more possibilities and directions.
I encourage all of you who've found yourself in this life stage to do the same.

Go while you can.
Do what you find interesting.
Be who you're meant to be.

Tuesday, May 24, 2016

Resource: Individual State Assisted Living Regulations and Licensing

With more building of "multi level" care facilities for Seniors, we need to be aware of the Regulations and Licensing of Independent Living, Assisted Living and Long Term Care.

Bear in mind, as you read the State guidelines, they are very general and allow these "businesses" to operate with minimal standards and minimal supervision.

This entry is a resource for anyone who wants to access a link to the regulations and licensing of Assisted Living in various states within the United States.

ADVISORY:  This site has sections only accessible through membership to the organization and has some connecting links that were not functioning when checked.

CONCLUSION: Site allows for discovery of connections through specific agencies responsible for rules and regulations in States and transference of this information through further internet search.

http://www.alfa.org/alfa/State_Regulations_and_Licensing_Informat.asp

Copied from the site is some basic introductory information to provide an overview of information available through accessing the various State sites on rules and regulations for State Assisted Living Regulations.

"The following resources are available to help you learn more about assisted living in your state. Explore information related to:  
  • State Regulations A list of each state's assisted living regulations including contact information for each state's agency responsible for regulating assisted living (scroll down to see below). 
  • Voter ID Requirements For Seniors A list of state requirements relating to voter identification.
  • Argentum's State Partners Links to each Argentum state affiliate and chapter.
  • Argentum In The States (Member Only Resource) A state by state look at laws and regulations, important legislation and proposed regulations, and other state specific resources such as: elder abuse reporting contacts, important news in your state, and information on the local government.
  • Argentum's State Regulatory & Legislative Snapshot (Member Only Resource) An executive summary of Argentum's comprehensive quarterly report about pending and enacted regulation and legislation impacting assisted living."

If anyone finds a site that covers the last two areas in the above listing that's for general public access, I'd appreciate your sharing the site(s) to inform those who choose to access this blog.

BLOGGER COMMENT:  Knowledge is power and understanding the "systems" and their functioning is as important in Senior Care Management as it is in buying a home, a car or making an investment. 

KNOW BEFORE YOU GO. 

Monday, May 16, 2016

The Taste of Bitter Fruit Served Continuously Through Undue Influence Lasts A Long Time

My Mother made me promise I would never place her in a facility until she had no idea where she was. 

I kept that promise.  I never put her in the Nursing Home/LTC/Old Folk's Home.

Julia H, her Undue Influencer, planned and executed every detail to ensure Mom's move from our home to a Long Term Care Facility including falsely reporting to the State of Missouri Elder Abuse Hotline preceded by her action in regaining her RN registration with the State of Missouri just months before she made her report.

Julia H took Mom to the bank, opened a safety deposit box and kept both keys. Julia H convinced Mom to remove my Power of Attorney, an appointment Mom had made decades before and I'd given her one over our daughter when Mom traveled with her. 

We believed each could be trusted and built our life together, our multi generational life, on that trust.

We lived together, Mom and I all but a few years of my life until Julia H entered our lives and saw the opportunity to take advantage of Mom, saw the advancing Dementia, probably knew it was Lewy Body Dementia, and took advantage of her and of our entire immediate family unit.

Julia had Mom take money out of our home, the little that still remained, tucked away for Mom's burial and what we'd allowed her to believe was "hers" but knew she couldn't have that amount and be on Medicaid. 

It gave Mom peace of mind to be able to count the money and know it was in her room, in our home, and we didn't care how she looked at it but we'd made that money possible over the years and had no intent, no matter how difficult the life and death journey was with my husband or with her, to use it for any other purpose.

Care giving 24/7 I'd not even thought about Mom's Social Security accumulating.  Dutifully I went to the bank for her, cashed her check except for a few dollars she deposited and gave it to Mom every month. 

Julia would use that "failure" to take Mom to the bank as a weapon in her arsenal of "proof" of abuse.  

Julia was really good at conversations with me that elicited information I had no idea were for a specific purpose.

Julia would ask me how Mom was doing in her visits and in her emails; was she able to get out, could I take her places like to the store and to the bank?

Stupidity or innocence -- a combination of the two looking at the situation from many angles -- I shared, I confided and I believed Julia H cared about Mom, cared about us and our best interests. WRONG. Julia H was focused on her goal, on her WIN, on seizing opportunity and taking advantage.

As I've mentioned in this blog previously, Julia H was an award winning tennis player and entered the Tennis Hall of Fame at her University. She plays still. She's a trained Registered Nurse complete with many hours in how to handle patients and families -- meant for good but used for the opposite.

Julia H, I believe, practiced and continues to practice Elder Abuse and is so adept at it that family members, ours included, do not see what she's doing and do not realize it's all about Undue Influence, gaining the trust of the Elderly and family members, and then helping herself to whatever she feels she can "get away with".

It was months after Mom's "entry" into LTC and my husband's death before I realized Mom couldn't possibly have spent money from at least nine months or more of receiving Social Security checks.

The last time I ever thought about Mom's having any money that might help us through the challenges we were experiencing with my husband's MRSA and complications of surgery and 100 consecutive days in the hospital, most in critical intensive care, was when we were behind on payments on our van, the only transportation we had, by $250. and were threatened with repossession.

Mom told me "NO", she wouldn't let me have the money. Looking back, I should have realized this wasn't the Mom I knew. But I respected her rights, "her" money and had told this story to Julia H. Looking back, I'm sure she felt Mom had that money and that's why she took her to the bank and secured the lock box in her name and Mom's.

In Mom's defense, a few days after Mom refused to help, she said she'd loan me the money, that was after the van was repossessed. By that time the amount was over $1,000 and when I told Mom the costs due to all the charges the company who took it added, she refused to help and we were suddenly without transportation.

A note of hope: a relative of our second son's wife had a car sitting in his driveway he didn't use; he drove it from across the country and gave it to us. He gave us a lifeline in a time when we were losing all hope and to this day I remain grateful for his help in our great time of need. 

Logical thinking, a function of processing information that disappears with Lewy Body Dementia, is now clear to us but back then we were told by everyone, including the Dr she was visiting, how capable Mom was "for her age".

A friend recently described her Mom, in her nineties, as "just plain mean" these days. 

No matter how I tried to counsel her, she would not accept her Mom might have Dementia, in particular, Lewy Body Dementia. 

The friend insists her Mom has a good Doctor who her mom sees regularly and the Doctor doesn't see anything and tells her "Mom" will probably pass from a fall but otherwise is "very healthy". 

Falls and LBD go together because the signals within the brain become less and less able to provide accuracy and that's why a higher level of assistance is necessary esp in the later stages.

Sad. So sad. My friend doesn't understand most Doctors don't recognized Dementia, especially Lewy Body Dementia.

Those who are fortunate to have a Dr who knows this silent and stealthy robber of lives, Lewy Body Dementia, have been given a great gift. 

We received that gift finally late into Mom's Lewy Body Dementia, but Mom's LTC Facility would not accept it -- diagnosis cannot be conclusive before death and an autopsy at this time. 

Diagnosis uses the terms "possible" and "probable" and the facility's "lead Doctor" refused to accept this "shoddy, inconclusive and improbable" diagnosis.

It was during those really challenging economic times when financial institutions were highly aggressive when we lost our van.

It was January, 2010. My husband was going to be getting out of the 100 day stay in the hospital and going into rehab. Our savings were gone. I couldn't possibly work. Daughter was in college and I was trying to keep her there so she could graduate knowing without that college degree, her ability to find anything, especially in the really depressed economy, would be limited to entry level, minimum wage jobs. She was and is bright, highly capable and was given amazing opportunities and had great academic promise.

I used to take Mom to the bank but caring for my husband 24/7 and trying to ensure Mom got out to Adult Day Care, both went to a myriad of Dr's appointments and other needs, I was functioning on little sleep and extensive physical challenges.

Anyone who's assisted someone needing a wheelchair from a car to a chair, rolling them through buildings and assisting them in getting MRI's and other necessary treatments knows it takes a great deal of physical strength, mental endurance and often leaves the care giver without strength and ability to do other things and even to think clearly and accurately.  

When you have TWO people needing to be moved by wheelchair, and you're not a certified weight lifter, the strain physically and emotionally is overpowering. 

Then there's the other challenges of toileting when you're out somewhere or just moving them through doors that have no automatic openers -- like at the bank.

And when Mom went to the bank, she didn't want to go to the drive through and insisted we go inside. 

I didn't need another challenge in life and decided, and she agreed, at the time, I could do the banking for her when I needed to go to the grocery store or out for something made more sense. 

I tried taking her with me but pushing a wheelchair and trying to get groceries is not an easy task.

I could not afford "private duty care" and there was no organization, no church, no community of volunteers to help.

Our daughter, seeing the toll it was taking, quit college to help and then also became a victim of long term care giving being unrecognized, unassisted and often chastised because she "wasn't doing enough" in other people's eyes or because she "left college" when she should have finished -- should have taken care of "her needs first".

It's easy to criticize and find fault from hundreds of miles away as my oldest son did.

It's far easier to believe Mom/Dad/Grandma can "handle" their lives because that's how you've always seen them. 

It's easy to make excuses for not providing help even in the simplest form of listening and hearing the truth and not turning it into a web of deceit being spun by an Undue Influencer for their own personal profit and gain.

Mom told us she was "happy" in a Long Term Care Facility when we found out she'd "moved out" through a notification of change of address from the postal service, wasn't coming home, as we thought and were told would happen by the Missouri Department of Health and Senior Services representative when they pushed her and us INTO GIVING MOM RESPITE.

Yes, there are family abusers but we weren't, aren't and will never be.

Lewy Body Dementia is an abuser to the person who suffers from it and to the families who are caught up in the web it weaves in the lives of all who experience it first hand.

The facility was smart; they placed Mom in an empty room, as a single occupant, a large, spacious and quiet room. 

Of course she would be moved from that location; it was a way to ensure she stayed, to get her to sign a formal letter of "self committment" which anyone who knows Lewy Body Dementia realizes the person with the disease really doesn't have the mental processing ability especially in the mid to late stages of the disease, to legally sign.

False, misleading and destruction of a family unit based on unsubstantiated and uninvestigated Elder Abuse.

Coconspiracy on the part of the Long Term Care Facility who saw a "capable" person at an advanced age who they could work into entering "their" facility. 

Why would the facility want to disprove Elder Abuse by the family? Families are a facility's worst nightmare as they visit and especially if they're vocal and become involved in insuring good care and quality of life. 

Facilities welcome Medicaid recipients who are mostly self reliant. It's a win-win for them because they require less care giving and reduce the ratio of needed employees to give care.

Permanent Residency in a place where, according to State Law, Mom had "rights" and one of these would be to Julia H's unsupervised, private visits with Mom. 

Yes,Julia knew exactly what she was doing and she knew the law, the system and knew very well she had a short amount of time to take action.

The State of Missouri incarcerated my mother, split apart our family, caused significant financial loss emotionally and financially, all on the report of a woman who had much to gain and nothing to lose because she knew and understood the system through "caring for" many other elderly people who had the challenge of Dementia.

Are we the only ones? As I write and talk I find others like ourselves. We are not alone.

What's upsetting is I've never been formally "released" from this accusation. No letter. No phone call. Everything has "disappeared". I understand. I do not accept. 

We were in her way; I was especially in her way. 

I had the same name as Julia's mother, who she'd told me once when we were Eucharistic Ministers together she really didn't get along with her mother very well. 

Imagine it was far more than just not getting along with but deeper and more challenging a relationship if not shown, certainly retained inside Julia.

Why was it necessary, Julia, to separate Mom from the only family she knew, the home she lived in for decades and the life with people who truly gave her daily care 24/7?  

Guess you needed to ensure you gained access to Mom's correspondence.

Trying to see if she had a charge account, perhaps, that you could use?

Possibly believing she may have had some "investments" or perhaps money tucked away some place and it was getting on the end of the year when these reports would be sent out.

IF YOU RECALL NOTHING ELSE FROM READING THIS BLOG, PLEASE REMEMBER:

Dementia exists before the starting of possible behaviors like staring into space blankly, continual body rocking, conversations with no one visible and other behaviors we know and can easily see mean the person is no longer really cognizant or capable. 

Lewy Body Dementia wears many masks.

Dementia is not to be ignored, dismissed or underestimated.

It is and will continue to be more devastating to entire generations until we recognize Dementia is a medical challenge the same as Cancer, Heart Disease, Kidney Disease and Lung Disease.

Dementia is the brain, the heart and the circulatory system combined reducing and eventually eliminating functioning.

Dementia is not inevitable.

Dementia is a group of medical problems with individual names but each is significant and must be spoken about, learned about and most importantly, understood.

It's not due to aging. It can happen in the young and the old. It's medical. It's possibly totally curable and potentially reversible

We hold the future of Dementia study in all its forms in our hands by joining the various Dementia communities -- Lewy Body, Alheimer's, Parkinsons and others -- together in a collaboration to promote understanding and to seek ways to reduce, eliminate and possibly cure

GET TO KNOW AND UNDERSTAND DEMENTIA -- 
IN ALL ITS FORMS