Monday, December 28, 2015

Florida Leading The Way In Full Disclosure on Senior Care Facilities Violations Made Public

Here  we "grow" again!  Meaning I'm learning, sharing and together we're adding to what we know about caring for others and ourselves in those "later years".

I start working on a project, get involved and always seem to find my way back to information about Senior Living or "Mature Adult Care" as I'm finding seems to be a new age description of life after 50. (Although some would say since 50 is the "new" 40 and Long Term Care is usually for people far beyond that "portal" of five decades.)

I was actually looking for a different work position. The job I have is ok but not using my experience and falls far short of keeping my brain stimulated much less adding to my knowledge and capabilities. I'm not ready to be a machine and crank out more of the same, I want challenge, I need to feel I'm positively contributing to my life and my community. 

Brain challenge. Positive activity. It's what most of us need and want in life. It's important for children and adults and even when the brain is challenged and incapable of performing at the highest levels.

Several mouse clicks later, I stumble on this website about how Florida is "shining the light" on facilities in their counties who provide what they call "Assisted Living" but seems more like the level of "Long Term Care" in Missouri.

On May 18, 2015, I wrote a blog entry "Way To Go North Carolina, Wake Up Other States" commending their inclusion of specific information reporting on Senior Residential facilities with statistics at a glance and a clearer reporting of violations and fines. 

You can click through on the title of the blog entry to read what I wrote at that time.

Who's next? Or who's also following this enlightening lead?

Let me know, readers, if you've checked your state and found any others that reveal these direct and far more informative statistics and updates on Care Giving in Residential Facilities. 

Make a comment and give me a website and I'll share it.

We're making a difference, you as readers and I in posting as we climb above the 10,000 mark. Love to see that double and with your input, we'll all be more informed!

REMEMBER:  We live, learn and grow together when we share information and help others today while building a better tomorrow for ourselves and those who come after us.

Monday, December 21, 2015

My Mother's Purse

As we're taught, so we learn. 

Mom taught most lessons by example. 

My Mom was raised in the times of "Spare the rod and spoil the child." 

She told me about how her father sat at the table, took the first helpings of whatever he wanted and then the children and then her mother got whatever was left. 

He was the enforcer, sitting at the table with a "switch" across his lap and finding any excuse to "make an example" of one or more of the many children, ten in all, in the family.

Mom welcomed the "new" parent-child relationship guides, like Dr Spock, and was kinder and gentler while guiding, directing and showing by example.

Mom valued education -- school and what she could learn by herself. 

I remember how she went back for her GED when I started college; she didn't tell me until she was ready to graduate. 

I was and am so very proud of her taking that major step when she was into her 50's.

The times I grew up in taught by books on raising a child, making a home, repairing things around the house and the family car. There were books for dreaming, too, including magazines.

News came at specific times. Published in the "news"paper and then seen on TV; the 60's truly began the Information Age. 

Not like today, of course, when information is at your finger tips -- literally -- and available 24/7 even as it's happening.

We thought we certainly knew more than our parents and their parents -- the same as every "new" generation.

We believed what we were told and it sometimes took months and even years to find out what we'd originally been "told" was far from what actually happened.

So, if you think media is "controlled" today, you should go back in time and listen to broadcasts "the way they were". We built "trust" on people we believed; sometimes we found out we'd misplaced this trust. 

My Mother's Purse. I watched the other day as a very small child took their mother's purse off her lap, opened it up and started rummaging through it for something they wanted. 

No request for Mom to see if she had it, no consideration it was "her purse". The child wanted and sought immediate gratification and did what is now considered "normal" -- took immediate action to satisfy that want.

Much has been written about the "helicopter parents" and the "generations of entitled children".  Where did they come from and why are they growing in number?

I never "went into" my Mom's purse -- not even when I was a grown woman -- without her asking me to do so.

Mom never had very much to keep in her purse but what she did have, she valued. 

I saw her take things from her purse over the years and add things as life advanced. When she'd ask, I'd bring her purse to her and never thought about going into it or through it. That was my Mom's purse. Not mine.

Mom taught me to respect other people's property. 

She taught me to ask permission. 
Mom taught me respect for others and to value each person not for who they were but for what they did with their lives and what they did for others.

My daughter was raised with the same foundation of life values. 

It might be "old fashioned" and it might seem out of place in today's world, but integrity and honesty should have no expiration date among the generations.

What have you practiced? What do you teach others by what you say and do? 

My mother's purse was a simple example of living a life valuing the world and all we come in contact with every day.

I still have her last purse. Can't part with it just yet. It shows some wear; it went everywhere with her almost to her end of days. 

When she stopped taking it along, we'd pick it up and take it with us. She'd passed the point of "needing" and even of "wanting" anything inside its many compartments.

To me and to my daughter, it was Mom's/Grandma's Purse:
A part of who she was and a part of life as we knew it with her as we shared so many years many great memories.

Wednesday, December 16, 2015

All States Do Not Have Federally Mandated Area Agencies on Aging

I started to write about my challenges with the Ombudsman program and began researching the program. 

This led to the discovery not all States have Area Agencies on Aging as Mandated by Federal Law of 1976. 

There are seven States and the District of Columbia without this program.

You can read more about advocacy and Long Term Care areas of the Federal Administration on Aging under the Department of Health and Human Services on this website  

Here's a short sample of what's included:

"SUA / AAA Finder

To locate a State and/or Area Agency on Aging (AAA) start by clicking the state on the map below or select the state from the drop down list.    After the State Agency on Aging information is displayed you will be prompted to search for the local AAA.    A few states (AK, DE, NV, ND, NH, RI, SD and WY) and the District of Columbia do not have AAAs so contact the State Agency on Aging to locate local resources.    To find resources in the U.S. Territories, please use the drop down list and select the location."

States were required to set up Area Agencies on Aging back in 1976 but there are still more than 10% of the States and DC without this MANDATED AGENCY?  

Didn't realize Area Agencies on Aging, a Federal Legislation dating back almost forty years was an "option".

Writing this blog, advocating for Seniors, I'm learning every day how what we think exists, what we believe we have for our "later years" can be "smoke and mirrors".

Once again, the consumer "aging in place" or necessitated having to enter into Independent, Assisted or Long Term Care facilities appears to not have certain levels of advocacy depending where you live or choose to live as a Senior.

Who oversees Seniors rights? Who makes determinations on violations? Who intervenes when there is a question of neglect or abuse -- in these areas?

What rights do Seniors have in these States and who ensures they're guarded and enforced?

These are questions each of us should be asking along with those of us who live in States with Area Agencies on Aging.

Research. Read. Get actively involved now. The time will come when you will wish you had, when you face being "housed" and sign away or don't have the mental capacity or capability (dignosed or not) to act to change the system.

It appears along with researching when we decide where we'll continue to live as we grow older, we need to continue to practice researching as we did about housing costs and values, taxes, ratings of educational facilities for our children.

We need to know more about Senior Living than what's available in an "area" where we would want to live, what "looks good" and where we might feel "comfortable".

Friday, December 4, 2015

Financial Abuse, Medicare, Facilities and Individuals

Did you know Medicare does not cover long-term nursing care?

Medicare does not provide coverage for people who need to go into nursing homes indefinitely because they are disabled or can no longer take care of themselves.

Medicare does not cover daily custodial care, such as assistance with eating,bathing and dressing.

Medicare  does not cover assisted living or adult daycare.

For more info, click through to a site you've probably used for general information, Web MD

The clock of life is ticking.

We found out about these non-inclusions with Mom and with my husband.

You have to be destitute, you have to give up everything you have (in Missouri if you're a single person you can only have less than $900 of "assets") and then they take away your Social Security, if you go into LTC, except for a small amount, believe it's now up to $40 per month.

Think that's enough?

What could someone possibly need in a facility, anyway -- isn't everything provided?

Let's talk about that:  

Facilities provide what they have and want to provide. So, if you need a better quality of paper pants, you or your family will most likely have to provide those -- as we did as long as we could for Mom.

That may not include "daily needs" you're used to having: Denture cream? Mouthwash? Soap that isn't harsh to older skin? Clothing? 

Any type of technology including a TV -- forget the ones around the center,the staff controls those and you watch what they want to watch, when they want it on.Pajamas, robe, shoes, socks, underwear? 

Medical care beyond what Medicare pays? 

Point of Interest:  Who chooses what plan and type of plan a resident receives in Long Term Care?

When you're in the "outside world" -- you do. In a facility, they choose.

That's just touching the surface.

So many of our elderly depend on the generosity of visitors and friends and family. 

This sounds like a horrible comparison but I remember visiting some zoos in areas where the animals begged for food from visitors; it was obvious they were underfed and undercared for.

Many humans possess an attribute called DIGNITY.

Some won't ask, some won't infer, some will just silently make do, as they learned from lives through the struggles of economic hard times. While our generation of those who lived through "The Great Depression" is lessening, we have many who've gone through hardships and losses through economic declines and losses.

Think of this generation who's gone through Bank and Financial Institution failures, Foreclosures and losses of homes -- what will they be like when they're in Long Term Care -- probably similar to those I see and saw when Mom was there.

I believe what we're seeing ,experiencing and feeling today isn't just complicated by the "Baby Boomer" generation but by generations faced with financial hardships, major setbacks and low wages not enabling establishing "safety nets" like LTC Insurance and IRA's.

People whose only real source of future possible income in homes they occupied and were paying for who were hit and are still being hit by FORECLOSURE will be the first and second waves that will test the strength of our economy and our social development.

And facilities often practice "revenue generation" through their residents by "taking them" for services they really don't want or even need. My Mom was constantly "beseiged" by not one, but two, workers who would try to "escort her" to the Beauty Salon to have her hair done, her nails done -- all in the name of getting that extra money, that small amount, directly into the facility's bankroll instead of "sitting" in an account for the resident.

We took Mom to get her hair permed and cut. She didn't need this "service" but the facility saw an opportunity and tried to convince her. While Mom still had some ability to discern, some cognition and capability, she'd tell them to go away but that didn't stop the next "wave" of facility employees from trying at another time, in another place, to convince Mom she "really needed something done" in between or it would "make her feel so much better to have "X" done".

Our Long Term Care Facility Residents and even those in facilities that are Independent Living and Assisted Living are truly at the mercy of those who work there and those who make the rules.

Be ever watchful. Examine your loved one's account and see what uses were made from the small amount they were "allocated". 

Get that Power of Attorney now and ensure that revocation can only be made through visiting an impartial Elder Care Law Attorney or other Attorney. Ensure your loved one and your family isn't preyed upon as we were.

Best suggestion I have, take over your loved one's total care including managing the "little money" they have by providing it directly to them or using it for those "special things" that make their day a little brighter.

I'm not naiive, I know there's financial abuse and some will not receive any money if this is done. My advice is for the caring, the concerned and the loving families. 

For those who aren't, we need better supervision and accounting in facilities and ensuring residents are truly getting what they want, when they want it and that means more Ombudsman, at least one per facility, checking in, checking up and keeping records to ensure Elder Financial Abuse isn't practiced by facilities.

Times change. People seldom do. If you're in those "Golden Years", the ones that come before darkness falls and you become dependent, look, listen and act to ensure your life isn't manipulated or controlled by someone you expect or would never expect to play a major role in your care giving.

Tuesday, December 1, 2015

Rampant Infections and Falls In Long Term Care Facilities Possible Causes

The State and the Federal Government "collect" statistics on the elderly in Long Term Care. Unfortunately, they don't collect the reasons for the problems, especially the rampant infections and falls. 

Come walk with me and see what I saw and see.  Open your eyes and then open your computer and let the world know what goes on behind the closed doors of many "average" Long Term Care Facilities.


CNA's move from room to room, resident to resident, assisting one and then another without washing hands or putting on gloves.

Food is delivered to a room by someone who simply picks up a tray and may handle plates, glasses and cups, utensils and even pieces of food or even assist a resident with eating without going first to wash or clean their hands.

Toilets are used by roommates who have infections and disease without any wiping or other cleaning in between uses by one or the other resident.

Toilets are often left without attendance or cleaning after a resident "has an accident".

Walkers and wheelchairs are seldom cleaned and evidence of fecal material or the smell of urine can be noticed sometimes from a distance but usually through close examination without the resident in place.

Handles on walkers and wheelchairs are often loose, brakes don't hold or lock securely by older hands that do not have the strength to engage the locks.

Placement of a roommate limited to a Gerry Chair used as a barricade forcing the other resident to remain in a chair or other fixed placement.

Dining trays left in rooms for hours after the resident has finished and allowing a resident with Dementia to eat food that may have spoiled causing intestinal distress and even infection.

Dirt and grime in places usually unseen -- behind furniture, under beds, behind curtains.

Thorough cleaning of rooms limited to once a year.

Thin blankets placed on the beds of aged residents living in a room with large windows where they sit or sleep nearby.

Call buttons disconnected from the wall or often just pulled loose enough so they don't connect.

Relocating call buttons for Dementia patients -- moving to another side of the bed, clipped in another area. Confusing and challenging for those who can think clearly let alone those with memory difficulties.

Teeth seldom brushed. Dentures seldom removed for thorough cleaning. 

Hearing aids placed in pockets of CNA's uniforms when giving a shower and then "gone" to the resident who needs them so desperately.

Limiting movement.  Restricting. 
A form of restraint without tying someone down.
Punishing for asking the wrong question, speaking up about something or speaking out.

Once or twice a year inspections that are anticipated or expected hide the reality of these places of residence no one would chose if they truly had the choice.

Socks and shoes hide peeling skin, sores and maybe even bruises.

A cut or bruise? Are you told as we were the resident fell but there was nothing to worry about. No Xray, no Dr's visit and there's a visible gash or huge black and blue mark.

Food brought to the floor sitting for an hour or more without benefit of a steam table or refrigeration.

Residents being fed, two or more at a time by the same attendant who wipes their mouths, breaks bread or handles food first for one and then for another -- and we wonder about those germs that run rampant in facilities?

Forced isolation through not attending to a light or call for help. Those "in their right minds" soon find the facility has ears and eyes and sees and hears everything and there WILL be repercussions from some staff.

Showers given at 10 PM or even later with residents woken from sleep because the staff had the time and the resident "wanted the shower" that day.

Privacy is a luxury in a shared room with a constantly open door. Men live across from women. Some have lost the ability to understand what being dressed completely or even at all means.

Medications that leave otherwise cognizant people slumped in chairs or constantly sleeping.

Lifts used on residents without the upper body strength or grip to "hold on" or "hang on" and subjected to one person trying to hold up the person while trying to manuever them. 

And you're told your loved one "fell"?  Actually, she/he was dropped.

This and more are what men and women go through every day in many Long Term Care Facilities. 

Walking through the entry, into the common area, or even visiting in one room and spending an hour or two won't always give you access to seeing the reality, the harsh truth of how human beings who contributed and provided for themselves and others are now treated.

Abuse? Neglect? Staff that's overworked and exhausted?

Sadly, this is happening in facilities everyday and it will continue until we open their doors wider and ensure there is more public connectivity and supervision.

Where do we look for the answer? How about down the halls on the main floor and inside the offices at this facility and at the headquarters of the owners of the business or organization.

As with places we may work, management and ownership write the rules and regulations, they either enforce or look away, run an honest and caring facility or one that could care less.

What can be done? Speak Up, Speak Out. Most of all, those of you who don't go to visit someone in a facility, make a New Year's Resolution early and "adopt" an older resident of a facility. Visit. Listen. Learn. Observe.

Then raise your voice. Use the tech tools of the internet and ask the hard questions and make the statements about what you've seen and heard. 

If Not Me, Then Who . . . . ask yourself. 

The clock is ticking. If you're "lucky" enough to live to that really old age or have the misfortune to become incapacitated, you, too will have the "pleasure" of being a resident of Long Term Care. 

We're all busy with lives of our own but we cannot afford to ignore the challenges of eldercare.

Tomorrow is just a day away!

Saturday, November 28, 2015

A Caregiver's List of Daily Reminders

The list that follows is simply a quick reminder to those of us who find ourselves involved in a daily life far from regular or average and involving care giving on a "learn as you go basis".

(1)  Try to stand back and step back to evaluate and plan. As a 24/7 caregiver this is one of the hardest things to do. It is the most necessary.

(2)  Communicate as best you can. You cannot please everyone and people react differently to life challenges.

(3) Keep believing in what you're doing, the person you're doing it for, and yourself.

(4) Stay focused and create mini plans even when it's simply reacting to and dealing with one crisis after another.

(5) Remember, you are doing the best you can with what you have at the time you're going through.

(6) Listen, learn, research, but above all share with others. Find or create communities where life, living and its challenges are talked about and needed changes are made.

(7) Life is day to day and we create the future one day at a time in the present.

(8) Be thankful sometimes when no one is there to see what you see, know what you know and do what you do because not everyone can bear the weight you've been given.

(9) Find one thing each day to see or hear that gives a small amount of joy to you and to your loved one. It can be a word, a memory shared or even a smile. These moments are priceless.

(10) The person you care about, the person you care for, has a journey you can only share coming alongside and beside but to them there is nothing greater than your being there.

Wednesday, November 25, 2015

Mom's LBD Let's The Light of Truth Shine Through

This entry began a few weeks after Mom's passing. We were yet to lose our beloved family pet, a cat we'd had since daughter was quite small. Mom and my husband and the cat. A family unit passing through the cycle of life, one after another, each going through an end to their lives and what we shared together.

We marvel at how time flies as we live in today and work towards tomorrow not realizing we're creating yesterday.

Daughter and I remain; half of a family that lived together from before her birth with Mom/Grandma -- 

A family unit of three generations living together and sharing a life and love. 

Now I'm looking back, going into the closet, into drawers, places "belonging" to Mom. 

Places I really didn't go and certainly not to remove anything, to give anything away -- without her asking, without her directive and without her knowing.

Respect for other people's privacy. I was raised with that concept. It's hard to break that habit, that life direction, even when the person's no longer with us.

Mama. Mom. So much a part of my life, of our family's life. You made me promise I'd never put you into a facility until you had no idea where you were. I kept that promise, Mama; at least I fought hard to try to keep it. I didn't break it, someone who didn't really care about you, about our "family" did.

Saying Goodbye each time we visited until the last goodbye before we returned to keep our vigil with you as you moved out of this life, away from us, ending a long and loving time of sharing and caring for one another.

I was grateful, so very grateful, you'd had a moment of "realization" one day not that long ago. . .

It was Summer, you'd had your 99th birthday, Mama. Your LBD was showing more signs of advancing; we saw it and we know Julia, who still came to visit, also saw the progression and your slipping into the final stage where you'd be leaving us.

More importantly to her, you would transition to where she could feel "safe" because you were the only person who could really reveal her dark side, the part behind her public persona of "helping the elderly" as one of abusing those for whom she claimed to give care by helping herself to what she could, when she could, while she could and then sitting back to ensure they didn't reveal her true character through continuing to exploit them through a "friendship" that was filled with deceit and deception.

I'd tried many times to talk with you about "the situation". Your Lewy Body Dementia was progressing. Memories, the good ones, the ones Julia couldn't distort, couldn't erase as hard as she tried; you had those. And they were what finally broke through Julia's manipulation and control. 


I wonder if you still stand at the lectern in the Church we felt was our second home  -- we had to leave, to get away from you, your presence and your immorality. Perhaps we'll return .. . someday. We care about those who truly serve, who truly believe and who truly are religious but their eyes must be opened, their eyes must see and their hearts must know and understand real truth as hard as it is to accept one of "their own" has violated and desecrated that sacred place.

We didn't want the LBD to progress; we didn't want you to get "sicker", Mama, but I am grateful for the change, the progression from staunchly supporting and upholding Julia as "someone who could never do that" -- turn you against your family and take money out of our home and out of your pocket -- to recognizing her as being what she was, a liar and a thief who came into our lives with only one intent, to take what she could get and use her trusted position as a Registered Nurse as we believe she's done before and continues to do, to gain personally from other people's tragedies.  

You said it all, Mama, when you said "the lady who came to visit me did take my money, I know that now." My heart swelled while it broke apart because as much as I wanted to hear those words, I knew it may have been painful, although possibly not with your advanced LBD, to realize the harm that had been done to you and to your family, your home, your life.

How did you finally move to that place of realizing what she had done when you were progressing deeper into Lewy Body Dementia?  

Perhaps a section of the cognitive area, that "Executive Reasoning" part, opened up for one last time. 

My mother, my friend, my ever so special companion through so much of life's journey, had seen or been given the ability to see TRUTH.

Now, I begin that task of going through your clothing, your drawers -- your life. 

Every day you'd lived with us, many decades of days we lived together as a multi generational family, you used this item, wore that piece of clothing. I finally got your things back from Julia, those we'd taken to you in your first "residence", your first Long Term Care Facility Julia convinced you was where you wanted to stay, where you wanted to live,would be where you were safe and could do what you wanted, when you wanted, how you wanted.

LIES. UNTRUTHS. DECEPTIONS.  Easy to mislead someone with Dementia, especially Lewy Body Dementia. 

But you knew that, Julia, you were a Registered Nurse, you "took care of elderly people with advanced Dementia" as you told us. You helped them move out of their homes, even helped one or more sell their homes. So helpful. Or was it so "help yourself" you were "full of"?

We knew what you were and who you were, Julia. Even our dealing with caregiving of my husband/daughter's father's severe medical problems and eventual death did not take away all our abilities. Either that or a higher power watched over us, which I feel is also the case, and led us in ways that later proved to be provident.

When we found out -- through a card received from the Postal Service for a Change of Address-- Mom was "moving out" PERMANENTLY, we went from disbelief to shock to anger.

We'd been "counseled" by the DHSS/Medicaid representative Mom should have "respite". Told it was for Mom's benefit. We had no idea you'd reported me to the Elder Abuse Hotline (falsely, but no one has ever been willing to admit they took action too quickly and didn't do due dilligence).

We'd asked for an extension of days for Mom to attend Adult Day Care; the "counselor" from the DHSS, we didn't know she was an Adult Protective Worker as well as a Medicaid worker and didn't know how Julia had been working to get Mom removed from her home/our home where she'd lived for almost four decades and we had created many great memories of a multigenerational family.

"Oh what a tangled web we weave when we practice to deceive". Julia, you are a master spinner of webs.

Upset but honoring her decision, we first delivered her clothes and belongings to the SNC. Boxes and boxes. This must have delighted Julia; she didn't have to rely on the key she'd convinced Mom to find and put in her purse to "come back and get her things after she left". 

I took pictures of everything. I didn't trust Julia. She had torn us apart and succeeded in creating a huge abyss between Mom, my daughter and I.

Looking back I know the only way she did this was to prey upon my weakness, my natural instinct to care for and about my husband, my chronically and critically ill husband, and to not see her taking this opportunity of stress and uncertainty and twist it into an advantage she could use to turn Mom away from us, her family, and towards her, the predator.

I come across all the pictures of your travels from the time you were 62; you travelled the world and always more than once a year. We subsidized many trips; gave you the ability to travel more than once a year; provided a Single Supplement -- all because you didn't like or enjoy having someone else in the rooms or cabins when you travelled.

Why did you cut cards into pieces?  Why did you decide to throw away so many memories? We salvaged them but were so confused by how you started destroying the memories that meant so much to you. Was this the effect Julia had on you even then? To get you to "do away with" anything reminding you of your "past" and your family?

She managed to get you to put away everything in your room -- to pack up, convincing you there was a man who had come to "take you away". A man you "remembered" from your youth but barely knew. A hope held out to leave a place you really didn't want to be.

No reminders. No connections. Advance the Lewy Body Dementia through removing anything that symbolized her past life, her family, her loves and what she held so dear.

Keep Mom believing in an impossible dream. She, was after all, "out of her mind", so what harm was there in "stringing her along" with this fantasy?  It wasn't a typical Lewy Body Dementia hallucination or delusion -- it was undue influence and using the knowledge a Registered Nurse gets in psychology and working with the elderly with advanced cases of Dementia over the years that you used to make Mom's last days disruptive.

Were you trying to get the staff to order more "meds" for her, Julia? You had to know that might kill her -- LBD patients shouldn't have some of the meds for Dementia.

You came and went. You constantly "checked" on Mom watching her progress knowing the end would signal its presence because you'd seen it so many times before and taken advantage of so many, I truly believe, and still do, I also believe.

What "friend" of an elderly person purposely and intentionally tries to come between a family that's lived together in peace and harmony, in love and friendship, over almost four decades?

What "well meaning person" wants to see an elderly person "incarcerated" in a Long Term Care Facility when they had a home, a room of their own and so many amenities to move to sharing a smaller space, to having others tell you what to do, when and how. To go from a world of self determination to a world of dictation of movement and complete control of daily life.

I'm sorry, Mama, I wish you'd not had to have those experiences. We, your grand-daughter and I, did everything we could to ease the challenges, to make the path a little easier and to try, even against the odds of having people believe we were the abusers and not Julia, to give you, up to the moment of your passing, love, care, consideration and compassion.

I miss you Mama. I miss both you and my husband. 

We go on. We know this is what we are meant to do. We will, both of us, continue to bring to light Undue Influence, Elder Abuse and manipulation and control along with how this can be accomplished in a system of laws, statues and regulations that do not fully protect and ensure the lives of seniors in Long Term Care.

We heard you, Mom, when you said those words. When you realized, if for only that short moment in time, the truth and the recognition of the real abuser in your life. Julia.

We live with a sense of peace knowing you shared this moment with us. We are grateful. 

Wednesday, November 18, 2015

A Care Giver's Life Song

I wrote this entry several months ago.  As with a few I'm starting to post, the reader should realize my journey through life was greatly affected by the daily pressures of coping with caregiving 24/7, watching lives slip away or being on the precipice of another critical medical event. 

If my writing twists and turns, moves here and there, it wasn't my succumbing to mental decline but trying to adjust to an everyday life that was always on the brink of another challenge or even another disaster.

We focus too little on the care giver, the person or persons who use all their strengths and abilities focused on providing for someone outside of themselves

They are the untrained, unpaid and often disrespected men and women who stand beside the young and the old. 

Society claims there are places we can go, people we can talk with -- the truth is there's far more isolation and disassociation for those who are confined, those who must separate from the "normal" every day.

Services?  Budgets overspent. Limited to bare minimum provisions with ongoing needs growing like a Tsunami. 

How do you get there from here when all the time in your day is filled with ensuring the safety and well being of another? 

Who contacts you? How do you find who to contact and what specifically you need, what you SHOULD ask for? 

Those of us who are outside of this system, who are newly entered plunging head first and without any survival gear in place flounder not just with the adjustments to another person's needs but to how we begin the process and move from advancing point to point along the way.

If you're fortunate, just like we say "there's an AP for that", we can say about recognized and supported medical and life challenges "there's an Organization for that". 

The challenge is finding the "right" one at the "right time" and one that still has the allocations, budget, funding and provides the services for which our loved one qualifies according to their specific guidelines and parameters.

As a caregiver wading through these systems, departments, associations, organizations is dependent on the individual with whom you make immediate contact and the questions you know to ask. 

It also depends on their level of knowledge and your level of knowledge of the needs of your loved one. 

That's why it's often important to enter into this "arena" with a Durable Power of Attorney for Health Care as many will not talk with anyone but the individual without this document.

When Mom and our family went through Lewy Body Dementia, unrecognized and unsupported, the LBD Association was in its infancy. 

Today, they provide more online and other support. But they're not as local as others.Perhaps someday the Dementia organizations will collaborate more, will help one another through helping all who need Dementia assistance.

Hospitals release. That's it. Their work is done. 

You're sent to a Dr or maybe to rehab. 

Usually no one walks this path with you and barely gives you choices or possibilities -- just tells you "your loved one needs this" or "your loved one should have that" or "your loved one is no longer capable of staying alone and needs 24/7 caregiving".

They send you to a Dr. They're not knowledgeable about what you really need -- very few are. Many haven't had a course in Dementia in years but they "think" they know. You need a Neurologist but does your health care provide for that?

Sure, if you have the funds, you can get care. 

What happens when the funds run out or they're not there?Trust me, you don't want to know -- but you need to know.

Listening to NPR some time ago, I heard a discussion about Glenn Campbell and his recent song released about his fighting Dementia. He's been diagnosed with Alzheimers. His wife is saying he's in Stage 6 -- losing most of his ability to communicate. He speaks small sentences but cannot understand what is said to him. Sad, but fascinating, these losses of mental processing.

From our own experience and observation, Lewy is a difficult life visitor to determine when it arrives. 

On the outside, Mom appeared to be capable. She was using a cane to steady herself -- we didn't realize challenges with gait/walking and balance were a part of this disease process as we'd never heard of any Dementia except for Alzheimer's and this was not an AZ symptom. But isn't that just what "comes with age"? Especially very advanced age?

Don't you then just "naturally" transition to a walker and eventually to a wheelchair? Isn't that "normal".

IS IT?  Why?  What makes the legs move? Signals from the brain. What makes us capable of walking up and down stairs, in a straight line? Our brain.

As so many have done, we wrote off so much to "aging" and a belief any behaviours were "normal" when you get to "that age". 

Today, I believe we weren't seeing the signs and the behaviours; but that was in a time when we'd never even heard of Lewy Body Dementia and when LBD, when it was written about, was believed to affect only less than 5% of the general population.

Just a couple of years ago we were told by a State of Missouri Adult Protective Worker, at the management level, with a Masters in Social Work:

"If your Mom doesn't have Alzheimer's, she doesn't have Dementia."

Hope whatever school he went to has revised their training program and the DHSS has opened their eyes, their ears and ensured their Adult Protective Workers and others have extensive training in Dementia and ALL ITS TYPES AND THEIR CHARACTERISTICS.

So many "slippages" we overlooked, minimized.

Mom covered up smiling, laughing, saying how silly her actions or words were. 

After all, when someone "recognizes" they've made a mistake, isn't that good, cognitive thinking and analysis?

Apparently not or perhaps the disease had kept open this part of her cognitive reasoning ability while affecting others and as we saw in her advancing through LBD this "recognition" would become less.

Mom retained this "self recognition" almost to the end. 

A part of her mind still tried to regain control at times and she'd laugh and say, "That was silly to say, wasn't it. I don't know what I was thinking." 

And then a few minutes later, she'd slip into Aphasia with "WA WA WA" meaning something to her or "BA TA SA LA LA" meaning something else.

This "made up language" -- as we see it -- sometimes was retained and repeated and other times different sound combinations often strung together and still retaining a "sentence structure", if you will.

It was as is often mentioned by those who share information on Lewy Body Dementia on a roller coaster ride for her and for us. 

Can LBD be advanced through the world around us? 

Can we lose more capabilities through isolation, lack of challenge and new opportunities?  

Can we affect the ability of the mind through our surroundings?  

For that perhaps we should talk about the children in foreign orphanages who are said to have difficulty adjusting to relating to caregivers due to lack of caregiving. Or, how about solitary confinement or war and imprisonment?

Is our brain as we age so very different from our brain as we develop during the years from birth into adulthood and beyond?

I often wonder if her brain incapacity development possibly escalated within the facility as she sat by herself, alone and without anyone to talk with but herself. 

No radio. No TV. Mom didn't want one. For some time she'd had difficulty operating a remote but looking at some of them even today, they're becoming more and more complex rather than simplified.

But then, based on what we observed as her taking apart a lamp we had in her room, constantly unplugging her electric clock and turning it upside down or backwards on her bedside table, these typical items she was so familiar with for so long were sometimes now a source of possible challenge and even of injury and so we made the decision to remove and replace with ever simpler similar objects.

We had to remove a picture she was given from the grandchildren and great grandchildren -- a family composite of the three grandchildren and their spouses and the four grandchildren at the time. Mom would become upset because they would "talk" to her, they would move out of the picture and around the room. We often found the picture on a slant and sometimes even taken down.

Mom became obsessed with packing and unpacking; she wanted out of the facility, that was obvious. However, the outside influence of J. visiting and the "new stories" about a "male visitor" who was going to "take Mom away" and move her out of the facility (a story that ebbed and flowed with the visits of J and we saw as being influenced by and constructed by this Undue Influencer; the stories ceased when J was not visiting and reappeared after her visits).

Mom fell a lot.  Balance and gait in Lewy Body Dementia are affected. The facility wouldn't acknowledge Mom's "outside of the Dr from the facility" diagnosis of LBD. They didn't provide the level of care she needed. Instead, they "allowed" her "individual rights" to say "NO" and asked her questions, like about participating in movement "exercises" instead of giving her personal time and working with her on movement.

Looking back is always clearer than looking forward when you're walking a path you've never taken and all around you is a vast wilderness with only an occasional reference point along the way.

Here's to the unsung heroes of society. Those who walk the paths of life alongside people of all ages and stages of life. 

Their journey has a beginning and an end but it's always the way they choose to travel even in times where they appear to have no choice that shows us how honorable their life choice is to simply provide what's needed.