Saturday, July 20, 2024

Beginning The End

I saw it happening. Didn't want to believe it. 
Shared with family. Can face when not facing Mom.  

Her passage into the final stage of Lewy Body Dementia--like other stages -- slow at first, highlighted by major changes, not always visible, often seeming to reverse. 

We're not certain how far into this stage she's travelled.

As we see the "new stage" we wonder when it began. 
I think we're seeing it when we're really into it because the changes are more noticeable and seem to be more prevalent.

How far along are we on this journey with Mom?  
Are we really slipping into the final final stages?  

SNC Nurse Manager called and said she thought Mom was ready for Hospice. 

I haven't cried for a long time.
Not  since my husband's death have I really sat down, tears flowing without any ability to stop them. 

I started to cry, I was at work, 
I hid the tears until I could be alone.

We were unable to visit for two days. 
When we arrived, Mom was slumped over.
She was  almost falling out of her wheelchair. 

I'd seen other residents this way. 
She couldn't communicate. 
Just two days had passed.

Mom wasn't communicating as much; she was talking before. She was eating or could be encouraged to eat.
She held and was able to finish, both pieces of an egg salad sandwich.

Now she looks as though she's lost at least twenty pounds.
Why didn't I see this extensive weight loss? 
Was it because her clothes are the size they are?
Some blame goes to the Nurse Manager.
She said Mom was holding at the same weight as always.
Just a few weeks ago.
Truth or fiction. We relied on whatever we were told.

Could Mom have lost that much weight without our seeing it happen? 

Yes, we'd both been busy.
I now had a full time job.
My daughter had a very busy part time job.
We weren't stopping by every day. 

She was eating we were told
She ate well even when we weren't there to feed her.

False, misleading, deceptive; not reality.
Meant to "pacify" members of "the family".

They "could" feed her?  It was obvious they were short staffed.
If loved ones weren't there, a "resident" was often "on their own.

Mom and others could be seen using their fingers.
Not able to use a fork or spoon.

From potatoes and gravy to veggies like corn or peas -- driven by the need to eat.

Tears come to my eyes even years later when I'm re-reading and feel so guilty, like I abandoned my Mom, even if I was working two jobs, trying to survive, desperately believing we would be together, the three women in the family -- again. 

Hospice. It's such a final step. No matter what they tell you about people going "off" Hospice.

At Mom's age, this is most probably not going to happen. 
don't like the limitations. 

If we accept Hospice we can't take her or send her to the hospital for an infection.

Mom and so many others have had UTI's.

I see UTI's as not something that has to be a part of growing older and incontinence. Am I being realistic?

If those who are responsible for her care checked her more frequently and didn't let her sit in her excrement or urine, I don't think UTI's would be so frequent.

I see how short staffed they are; I hear the men and women beg for someone to take care of their needs. 

I hear an LPN tell someone to "be quiet" and "I'll get to you".

Twenty minutes later she's still distributing medications and no one has helped the person who called out.

If Mom's Caregivers at the SNC watched her as closely as we did, they'd see the changes, catch the eye and other infections. 

Most of all, they'd monitor her illnesses/infections as a medical facility, which in Missouri a Skilled Nursing Center is, alert the Dr in charge the medication did not work.

We can't not try to help her. 

Mom's wishes have always been to seek medical help for infections. 

We'll make the decision and take her to the hospital -- even though she'd just been about ten days ago.

I'm walking the road with Mom and I'm not that far behind where she's travelled even though Mom had me later in life. 

I'm afraid for her. I'm afraid for me. I'm afraid for you.

Sunday, July 14, 2024

Change Bypassing Generations

Just Yesterday, High School and College Graduations, Speeches and Awards, Dreams and Desires.

Where will they be ten years from now?                                                       Graduates believing they can define their lives and segment?

Filling spaces others left or moved on. Wiser? Encouraged? Disillusioned?

The AI Clock has been ticking and taking.

How adaptable are these "graduates" with some experience?

Still pursuing "more" education, certifications, internships.

Perhaps a few years of experience, finding their skillsets once cutting edge are bordering on obsolescence?

Keeping Up With The AI "Joneses" will be far more challenging than keeping up with the humans.

How many burned out? How many just gave up?

Trying to use what's now obsolete education and training that used to be a building block but now is simply a series of platforms leading to a place where jumping off occurs.

(History repeats itself when AI went from a dream to prototypes to every school, library, business and almost all homes.)


Boomers were stuck in a continual need to change to increase income, to move to gain better possibilities and to realize acquiring and adding from household items to children, was a major decision more complex than additional costs.

Today, seen by many as "affluent" who were actually only moving into a slightly higher socio economic class when they moved from an apartment to their first small home, added family members and possibly moved again with a slight upgrade. 

Then, for some, the "biggie" -- buying that "forever home".


This "Generation" is often the same ones whose parents pushed their parents -- The Boomers -- for "family vacations" where the "well funded and invested" Grandparents footed the bill for them and their parents.

Now, they have been entitled for decades, got an education, went into the job market, decided they could get a "hustle" and made some good money -- for a while. 

Whoops! Not really a business person. The shining light of so much coming in overshadowed the glare of what lay in the shadows of "reality" business organization and development.

GEN X. What a name for a group of humans!

Is that "X" marks the spot where we fell asleep at the wheel of life and so many passed us we could barely catch up let alone get ahead?

At least previous Generational Titles were a little more creative!

That's the challenge, really; change takes decades but what it does is often bypass some generations, setting aside others.

Saturday, July 6, 2024

Boomers Facing Strike Three

Brooke Barley recently wrote an article in yahoo finance. 

Let's have a "generational conversation" with proof Seniors "giving up" their homes benefits both the seller and buyer.

Some are Millenials, but their ranks are being quickly overtaken by many Gen Z's who begin their ascent complete with "acquiring" and "accumulating", believing they can do it all in a short time "resting on their laurels" forevermore.

Today's "rising stars" believe what they hear from the pulpits of the internet with thousands of Influencers now making their living giving some FREE and some PAID advice to anyone who clicks onto their site.

It's like going into a Supermarket after shopping at a local market -- so many choices, so little time.


She/He looks nice; is funny; reminds me of myself; I kinda feel sorry for them with all they're told me about their life challenges; what they said makes sense to me but then they know more than I do; what's the harm in listening, using time I have anyway. . . 

Tik Tok or Tick Tock, time is finite and children today are being told they can have more by "taking shortcuts" and by using "tools" to give more time for other "activities" -- all those online games and videos, for example.

What's being retained and what's being seen as not necessary because change is so fast learning a system or procedure isn't needed -- at such a young age?

How are we teaching learning and reason? What are the standards and who makes the rules & regs?

Are 16 year olds allowed to drive capable of running a school? 

If a school, why not a business -- I know, some are, however, as it's been for decades, there are always those "early bloomers" among the many "late".

Influencers? They or who they watch and listen to?

Prior generations saw the youngest as being the most malleable and it was they who were conscripted, sent to work in mines, chosen to serve others.

Have we truly stepped beyond and believe aging is losing and youth is gaining?

What if the "learned", the "experienced" simply sat down and stopped being at the front, in the lead?

Who can describe the chaos and frustration that would prevail?

Take away wisdom and you have chaos.

Now, about Ms Bailey. . .

When it comes to validating someone who has no "presence" on line -- not even in LinkedIn where most professional people appear -- why read what this person writes much less "follow"?

You decide, readers, are we going back to the ancient sport of throwing someone into an Arena telling them to fight to the end?

Maybe the writer has a "disjointed" family and doesn't want to "support" the elderly's rights to retain; possibly believes they should pay for all "family vacations" and "give away now' everything of value because "they never use it".

From generations who valued to those who covet. 

From children who protected to those who divide and take before it's their time.

Gen X was truly the first "entitled" of those who were "common" if not "born into" position, money, privileges.

Early Boomers lived in a Developing World where TV was new, lasted only a couple of hours each day, Kid's programs were so few you could count them on one hand and you only saw "local programs" until alliances and abilities were formed.

Whoa! First pitch and it's a foul ball. Using Stats from 2019. It's mid 2024 five year old Stats in this area are obsolete.

When I debated in High School and College I would have endured "shameing" for old, irrelevant information. 

She has the world at her fingertips and some far more advanced resources from more than just her "local area".

I had to physically go to the Main Library and research without the aid and assistance of AI, find and know the "reliable" and "honest reporting" resources -- not just read and regurgitate.

In today's world, Stats are gathered by highly reputable resources, on line through these same libraries who've chosen to continue to provide factual resources. 

Far easier to find, copy and paste -- set aside those 'yellow" resources and cite the real experts known for decades.

We live in a fast paced, high tech world where Stats are constantly being generated and by some significantly reliable and accurate resources far more reliable than a company looking to continuously "build online because it is ONLINE"

It "proved a point to be made" even if it is "cold stats" being used? Not in today's world and not in yesterday's.

Let's treat telling Seniors to "Get Out" because younger generations want/need a "home", not an apartment, not a condo, not a rental, by it's real "purpose", home ownership.

For Seniors, this "forcing a particular move" is like a Baseball Game.

First Pitch, Low and outside: STRIKE 1 -- Many boomers are "house poor," meaning they've bought a home that prohibits them from affording much outside of paying for that property with increases based on "cost of living" for an "average family".

Pitcher ready to go for second strike, signal sent -- high maintenance means you should "downsize".

Batter steps aside, moves around, hits bat against shoes: shows decades of hard work, family responsibilities, saving less spending more, looking forward to paying off mortgage -- transportation, taxes, food, utilities, College for kids . . . 

Referee steps in -- moves the bag, repositions, removes for a short time to examine, replaces, moves batter's positioning, everyone tries to adjust.

Methinks Ms Barley needs a few lessons in Statistic/Fact citing.

Boomers may live in homes with "high maintenance" but they didn't originally buy a home worth hundreds of thousands and even approaching even higher in "value".

Boomers footed the bill for taxes for NEWER and TECH CENTERED Public Schools -- even if their kids went to a private school because "their kids" deserved better and more.

Taxes for many services they no longer use, if they ever did, based on an "inflated" value they probably won't receive due to all the "closing costs" and "moving costs" and just plain "costs".

As for being prohibited from affording much outside paying for the property -- it's a lot better than forking over several thousands of dollars each month to live in a shared room with only a bed, possibly a chair and a part of a hanging space/closet, a few drawers AND A SHARED BATHROOM.

Your competitors are the large entities buying homes and renting them OR entering them into the "new system" as " Vacation Rentals".

SHOWER? Down the Hall. Nope, can't use without staff. 

Hair washed? That's extra. So is everything you'd "like".

What about all these "amazing new residences for Seniors"?

Many come with multiple thousands a month "living expenses"  and require the "resident" to have specific capabilities constantly needed to be proven. Couples? Maybe. Perhaps. Not always. 

Pets? Please! Cat or Dog or Bird -- maybe a "Group" will visit with some "older animals" who are capable of being pet by so many hungry for personal contact even for a few minutes.


Sounds like a lot, right? 

So who's inflating the value, buying at outrageous inflated pricing that once "the ball starts rolling" it takes a major setback to get any slight, let alone, major reduction. 


Simple Business Math: Supply and Demand. Look it up. 

We put in the sweat and even the tears and you want to reap benefits we can continue to use but you believe you deserve?

Old words describe today's practices: Envy & Greed.

Put in lots of work, maintenance, upkeep, repairs, replacements, siding, roof, new gutters, furnace, windows and floors.

Updates and full removal of bathrooms and kitchens, walls and doors, electric and gas furnaces and cooking -- totally new Kitchen, lighting.


That's the challenge seen when a "writer" who should be writing Fantasy and Fiction writes about the "real world".

The practice of Communication has moved into Demanding.

Today all ages believe they have something "valuable" to say.

It's easy to post on line and so they do it constantly.

No thought to what energy or resources are being used.


These were directives of the daily lives less than a Century ago.  

They had shortages and it was of concerns where money would come from for the ever increasing and escalating "cost of living".

Why? Because producers of everything this generation was also taught to "want' kept them running after the carrot and chasing rainbows.

Today's it's not just how much you "have", the focus of the generations following Boomers, it's about how much you can create, how often you can text, or how many pictures you can post.

We're not using "electricity" so what difference does it make?

YOU ARE USING TIME, ENERGY and do you think it's thin air that's transporting your minute to minute can't keep your mouth closed or your life to yourself?


Raise those numbers, think about getting "paid' for what used to be gossip, heresy and even conjecture 


Congrats! You and your close predecessors have jumped on the human bandwagon of believing NOT TO PUBLISH IS TO PERISH.


And, yes, we died for you. People always forget Korea & Vietnam.

We lost fathers, uncles, cousins and family friends from results of WWII and at the Twin Towers and a field in Pennsylvania --to give you Freedom, Choice and the ability to work with and care about. 

You don't wait for "your number" to come up. Many of you feel no "responsibility"for sacrifices made. Entitlement is your focus.

Not all of you, but far too many, raise voices believing YOU are better than, smarter than, and younger than -- and reach your full hand into every part of life believing whatever you see, whatever you touch, "appeals to you",  SHOULD BELONG TO YOU.

Those "old people" spent decades working. 

You believe arriving 5 minutes past a "start time" is "your privilege".

Not only do you "want" our homes, you believe we should provide family vacations without your paying your share.

We gave you educational opportunities, sport events, extra curricular activities, Summer Camps, Hockey/LaCrosse/Baseball and Football, trips to the Beach and the Mountains with sports and activities . . .

We wanted you to have a "better life", one we never had: paid bills to provide this all the way through college.

Read and weep for yourselves moving into a future where you'll face disappointment constantly because you've never learned to be patient, be considerate and to value and honor our aging.

Monday, June 24, 2024

Isolation & Shelving Feeds Dementia

What if some of the "problems" of Alzheimers and other forms of Dementia were discovered to be more social rather than physical?  

Cultures other than the American system of caring for the elderly have provided evidence many behaviours and actions can be managed without drugs or "shelving" people in an institution.

Understanding which parts of the Disease are manageable and moving to ensure resources are available is critical. 

This includes activities both mental and physical are provided in Adult Day Care Centers and ESPECIALLY in Long Term Care Facilities which generally shelve or "park" people with Dementia at certain levels or stages.

Why aren't we cross applying findings in medicine and behavioural studies to benefit Dementia patients?

Touch. Many of our elderly go from day to day only experiencing the touch of another human being providing necessary medical procedures or daily life skill assistance.

These times of "touch" can be more beneficial if the procedure is done in a caring and patient centered way. Unfortunately, observations have been the usual "interplay" is one of get it done as quickly as possible, with as little time as possible and no time to interact or talk directly to the individual to prepare and to encourage.

I've seen more caring from the receptionists and cleaning/maintenance staff at Mom's SNC than I have from most of the CNA's, LPN's, the RN and the Adminisrtative Staff at the facility.

How long would a baby, infant or child survive and how greatly would they thrive if we denied this comforting human interaction?  

Remember the children adopted from foreign countries who were isolated, denied human kindness/touch? How difficult was it for adopting parents and for the children? 

WHY AREN'T WE WRITING ABOUT OUR ELDERLY and how they're being shelved and greatly ignored all in the name of "care management" designed for the benefit of the facility and not for the benefit of the individual resident.

Speech. How often does someone sit and talk or involve more than one person in a conversation -- even if the majority of the talk is done by the "caregiver"? 

Visiting A Loved One. Look around, say "Hello", stop a moment to talk. Give the gift of a moment of time so valuable to those for whom time seems to be never ending between times of human contact.

Recognize the humanity of all with whom you come in contact while visiting a loved one in a facility. Spend a moment and give someone the greatest gift -- human interaction.

Most "interaction" at Mom's facility has a purpose -- analyzing and charting. 

If someone doesn't want to participate in the group activities at Mom's center, they become more isolated. 

When I visit I see many people who barely get out of their rooms and who are becoming more and more "dependent". 

Some may have mental challenges but many of those seem to have "developed" with the systems and procedures used in the facility.

One dog and one cat live at Mom's facility.  The dog is older and very set in his ways. He used to take the elevator, go to various floors and "roam". Now, he lays around, has put on lots of weight and often moves away when people approach him or sleeps most of the time. 

The cat is "isolated" in the Activities Room so only those people who visit that room get any interaction and she, too, is a loner (typical, I realize of cats). 

Occasionally a couple of dogs are brought in to "visit" residents and you can see the joy in the Resident's eyes and in their bodies. 

They virutally light up and wait patiently hoping the dog will be brought to see them. 

A few residents have family members who bring in dogs to visit. Unfortunately, these dogs often don't see anyone but their owners and I understand they're not all "trained" to accept other people.

What's needed is more frequent interaction of residents and animals.

Humans thrive using our senses. When they're deprived or eliminated, at any age, our body functions are greatly affected along with our brains. It changes our personality, our outlook, our behaviour.

Let's find more ways to give Seniors interaction with humans and pets. Let's stimulate their brains, their positive emotions and build healthier lives for all.

Wednesday, June 19, 2024

It's A Dog's Life in many LTC's

Visited Mom's old facility.. 
Calendar showed three days of "Seated Activities". 

Sit. Stay. Good resident.   
It's a Dog's Life for many.

All the "activities" in the lower level Activity Room are board games and "sit down" games, or Seniors can visit the resident cat and now the resident rabbit who takes up a major part of the room in a cage.

You can watch the resident dog as he waddles here and there. 
He's quite old now. Just like many of the others living here.

Great to have animals around but where are the spaces for Adult Movement Activities? 

Oh, that's right. they have the "dining area". 
Just move aside the chairs and tables. 

They can't? Well, someone will .... when they have time ... or when they "think" to "organize" a "class".

Where can residents "work out"?
They need a medical script requiring Physical Therapy.

This is a Long Term Care Facility. 
By law, in most states, it's a "medical facility".
They have "their own" medical staffs although not consistently.

The residents are considered "patients".
Distribution of "meds" is a daily routine
Many arrive with a few and soon have multiple.

No one counts the number of "mind numbing" and "life slowing"
medicines given to "keep Mom and Dad moving slowly".
Easier to control and manage by low staff levels.

Interesting how we believe movement is key to continued good health and then we "lock up" parts of our society and take away any and all real physical activity believing they will fall, they will have problems they cannot and will not ..... etc.

Staffing costs money that eats into profits for the "investors".
This is not a "service", it's an "investment" requiring positive returns.

Where's the library with books and computers?
There is none. 
A few books are displayed in the "living room" on a shelf.

Decorations mostly, across from the "entry desk" in sight of "friends and relatives" arriving and departing.

Safety and Security? That requires staffing and additional cost.
Walk right in. Go wherever you want. 

People are supposed to check-in but that's seldom what happens.
Often without personnel so anyone can "get in".

One book where people sign in and out with times.
No tracking of who's visiting to see who comes and goes.

The only computer is in a room reserved for "staff meetings", "family" conferences and occassionally reserved for a resident's birthday with family/friends. 

The computer is "out of bounds". 
Not to be used or touched except by staff.

Residents are seen as "too old" to use "technological equipment".
Facilities practice the old saying:
"You can't teach an "old" dog "new" tricks.

Question: If a two year old can use a cell phone to play games and explore why can't an eighty two year old do the same?

Provide one for Mom/Dad? Unfortunately theft is also high.

At Mom's old facility, anything that involves some or more involvement by staff just isn't  "feasible", isn't considered or is negatively presented. 

Depending on the medical conditions and judging from the few people who use the "Main Dining Room", it's a handful who can get into the area since all use walkers or wheelchairs.

Wheelchairs that need someone to push or movement of huge wheels keep people from "exploring" or as the facility says, "wandering'.

Once in a while the local "book mobile" comes by. 

It parks outside. You have to be mobile to visit and it requires a "step up" which few can do. Doesn't anyone think about these "barriers"?

In the "fireplace room" just off the reception area where there's a couch, some chairs and where some residents and many "visitors" spend time especially when the weather isn't good for going outside, the low seating couches and chairs require assistance by a second person and are seldom used by residents.

Instead, they sit in wheelchairs. 
Moved from place to place. 
Few with strength to "move the large wheels.
There they sit for hours on end.

Oh, and there are "favorites". 
Usually women who "join projects" or show participation.
My friend, Carol was one for a very long time.
She "posed" for pictures showing the "social times" and promoting the facility to the outside world.

There are two bookcases with donated books. 
A few are Large Print. 
I've only seen a handful of residents ask about the books. 
Most probably don't realize they could ask to read them. 
They look like decoration, not for reading.

NO.  Newspapers. NO.

It's assumed at Long Term Care Facilities that the residents are beyond the ability to move except with a walker.

Almost all use wheelchairs or Gerry Chairs (where they sit/lay and have little attention).

They enter the facility walking and quickly realize, like children, they do what they're told, how and when they're told not asking questions.

There are three levels of "Senior Living" -- Independent, Assisted and Long Term Care in Missouri but only one, Long Term Care qualifies to have Medicaid beds.

Long Term Care is defined in Missouri as needing certain amounts and levels of "personal assistance in daily life" and there are qualifications regarding ability to move independently that can disqualify a person from LTC. 

Upstairs, on the third floor, a TV is turned on. 

Some sit and watch. Others sit and stare. 

Staff "chose" what's on TV and sometimes that choice isn't a good one for those with memory loss, sight problems, hearing problems or who may be experiencing mental processing challenges. 

For the Staff, it's a great way to have your afternoon soap opera and work while watching.

There is little or no stimulation, activity, exercise that really moves the body and the mind.

Only those who are "mobile" on their own or who are a "favorite" get to the "lower level" activities.

Do you go to a Gym? Do you workout? Do you walk or swim? 

We're told every day how important walking and movement are, how challenged our bodies become including the internal organs when we sit all day.

So what do we do in Long Term Care?

We treat movement as dangerous. We slow down the body and cause more challenges as we practice lethargy rather than encourage movement. But....that would mean more staff....more expense...and there are no rewards for lifestyle improvement in Long Term Care Facilities from Insurance companies as there is in the "real world".

We take away "hazardous" walkers. Why not invent safer ones?

THERE!  Yes, you Entreprenuers and Small Business people. The market is out there; the need is growing every day. 

Invent. Create &  above all CARE about those who are where YOU will be .. sooner than you think.

Friday, June 14, 2024

Battle of the Ages

Ever notice how age has become a "mention" in many conversations and on the internet?

It's fascinating to me how certain age groups are brought to the front and have "top standing" for a while soon to be replaced by one that's younger, more "cutting edge" and less "conforming'.

Boomers or Seniors have become the "adversaries of the day" being promoted as sitting on wealth, not "having to work" and able to enjoy "the good life".

Why when someone "covets" what another person or group has achieved and retains become so "necessary and wanted" do these "groups" find numerous ways to criticize and attack to try to gain control and push others "out of the way"?

Those of you in your 20's, on your own, formed a relationship, perhaps married and beginning a family or wanting to "share a home" with others to have more room and a nicer location -- you have far better prospects than the Seniors you're trying to displace, move on or out.

"Seniors" doesn't mean reaching a certain age -- it's defined by knowledge, usage, ability and access to technology capable of continually adjusting to "the next" innovation and advancement.

Leaders in yesterday's classes would still lead today, it's the person, not the decade.

Simply put, age isn't the definer in society, it's accessibility and ability -- where, when, how long and in what ways determining where and how people live, work and survive.

Tuesday, June 11, 2024

Come Immediately, Your Loved One Is Dying

 Originally posted October 23, 2015. Mom Passed January 2014. 

I've written about the challenges and complications when death in a LTC isn't anticipated, no warning, no consultation, just a call as you'll read below. 

Reposting because it's as prevalent today as it was then.

I believe many of today's  LTC's are heartless and self centered focusing on the bottom line and not residents. Owners are multi millionaires in many cases; these are what I call the "government funded facilities" where many on Medicaid are housed.

Readers, in the United States the cost of LTC is so high it bankrupts most Seniors very quickly. In today's economic challenging times, I believe we'll experience many more.

Thank you for reading my Blog. 
Yes, it's been a few years since Mom passed.
Do we ever forget a loved one who meant so much in our lives? 
I continue to advocate for Seniors and plan to find ways to do more.

Join my journey. Welcome and Thank You for continuing to visit.

The message can be unexpected and delivered quickly.

Come quickly. Your Mom is dying.

For me, the LPN, the Head Nurse on Mom's floor, called and wasn't looking for a conversation, wasn't looking to provide information. Direct and to the point.

Shock and awe. Unexpected in its announcement.

We'd missed visiting Mom for a few days; horrible winter storm; car was out of commission; temperatures dipped so low our old tires couldn't take it so we had four flats. 

AAA told us it would be at least 24 hours and possibly 48 hours before they could come.

Once again we felt the heavy weights of life pressing down faced with not knowing what to do, where to turn. 

Family?  None around. 
Friends? Since husband's death those numbers had dwindled.

Car was parked outside. Tires were frozen to the ground.
It would take every dollar we'd been able to put away from the part time jobs we were able to get to replace the four tires on the only car we had but we had to find a way to go and be with Mom.

Daughter and I passed the LPN who had called us on the phone as we walked into the facility. She was walking out, leaving for the day. 

We thought she would stop, talk with us and help us through this difficult time. 

We thought someone would approach us, meet with us, go over Mom's condition, their observations and above all, a Dr's report generating this call to come, of imminent death. 

She paused when we called to her. She said very little, only responding to our approach and restating how Mom's time had come and it was good we were there.

She didn't take time or get anyone to go with us, to explain to us what had happened, what was going on, what to expect or what could be done.

In the hospital, when my husband's death was imminent, we had compassionate, caring conversations with a Doctor who attended him. Why should this be so different, this "medical facility" just a step down from a hospital. 

Why do we accept having Long Term Care, residential facilities that are not mandated by law to provide educated and trained personnel round the clock who have training in communicating with residents and those directly in their lives -- and deaths?

Death doesn't come by appointment or any specific scheduled time just as falls, infections, cuts, urinary tract infections do not arrive or happen "on a specific schedule of 8 AM to 5 PM" which Missouri State Law currently requires an RN to be on premises. 

(NOTE: Believe there's finally a new law in MO but not sure if it's 24/7 RN coverage.)

I felt as though Mom was here today, gone tomorrow and someone else would replace her -- in her room, her bed, the space she "occupied" for what to me was so short a time compared to all the years we'd spent together. So challenging to walk in totally uninformed.

We weren't thinking clearly. 

We expected to be taken to the Hospice Room where we saw others go during "the last days".

Not for us because we "refused" to allow the facility to use their "in house" Hospice; we wanted to bring in a local very well known Hospital's Hospice Service. 

Denied. Not allowed. No one except their facility "Hospice".

Isn't Hospice a level of medical care? 

How can any Long Term Care Service deny medical care and not be severely fined by the State of Missouri? By the Federal Government? By Medicare? By Medicaid?

We were once again facing end of life with a close family member and our first response was to get to her as soon as possible.

Imagine our surprise when we arrived and Mom was in a public area. Not in her room. Not exhibiting any signs we thought we would see as "End of Life".

Among so many others -- being watched as a group by staff sitting behind a counter, talking about whatever interested them, occasionally answering a phone call or a question from a passer by. 

Maybe writing a few notes in a book or on a form and "seeming" to be working while obviously taking their time and making this activity last as long as possible to perhaps avoid another chore, one less desirable.

Mom was in the on floor dining/"holding" area in the Gerri chair that had become her place outside of the bed in the last couple of weeks -- where we'd found her several times before the weather became so difficult.

Mom's lift/recline chair had stopped being able to be used because it was in a reclining position and couldn't be moved -- the facility promised to have it fixed before we left but of course, no one did and no "substitute" was ordered for her even though this was her "bed" and this was the most comfortable place and one she wanted to be in.

We tried to get a report from the floor nurse(s). No one seemed to know anything.

I asked them for Mom's daily report. They didn't seem to know what I was asking for and said we could talk to the facility RN, the one mandated by the State to be "on premises" during "regular daily business hours -- 8 to 5".

We waited about 20 to 30 minutes. She'd left for the day.

We asked for someone, anyone who could brief us as to what was going on, why they believed Mom was in the process of immediately dying.

No one came.

We asked about what "signs" they had about Mom's passing as we were seeing the same person and the same low level of ability but not what we thought we'd see: visual signs with labored breathing, unconscious, perhaps, or some other visual "clue" life was ending. 

We observed nothing different from previous visits.

Mom was in a public area . . .  in a Gerry chair with her legs hanging over . . . and a poorly wrapped area on her leg . . . where we'd seen cuts from the unprotected sharp metal edges on the chair we'd drawn to the attention of the staff the last time we visited -- and, of course, had not been taken care of.

One of the LPN's suggested we move Mom into her bed "where she'd be more comfortable".

Once again, we'd drawn attention to what we considered to be neglect on the part of the facility. That seemed to be the trigger to move Mom into "her room"; 
the room she'd shared with a lady who was unconscious most of the time, we believed because she was a challenge when she was awake. 

Of course, HIPPA prevented our knowing the truth and since the woman was never visited by family while we were there (and we'd been visiting every day for several months), there was no one to talk to about any concerns for the woman's safety.


Yes, this could be called a "short time" to go through the process of dying but we weren't sure it hadn't been an additional four days we hadn't been able to come plus the four days we shared with Mom.

Honestly? We weren't sure Mom hadn't simply not been fed or given liquids for several days and there was nothing in any orders or requests she'd made for this type of "denial" or "elimination" -- especially without a Dr's review of Mom's medical condition and advisory to us, her POA's and her designated Medical Power of Attorneys.

Mom wasn't offered any water or food while we were there.
There was no mention of her not being able to swallow or of concerns for her choking or the need to place her on IV or a feeding tube. 

Did she "refuse" food?  There was none to refuse. 

I finally had a call placed to the Dr and the "staff" brought in a tray with plates of food -- food like you and I would eat, a regular menu. 

No soft or pureed foods. No liquids only. 

We saw it as a "slap in the face" to us; as if we were so "incompetent" to believe she could eat at all and providing this "full meal" was their way of saying, "See, we told you, she won't eat."

Death comes in so many ways and when we witness the death of an older person in a long term care facility, are we witnessing a "death" or are we witnessing the affects of neglect and/or abuse?

Our thoughts return to our own experiences and frequent observations before this time of vigil: the person assigned to assist Mom or even to try to feed her busy with conversations with other workers, have four or more people to feed and therefore couldn't keep track of who had what and when .... or.....what?

Heard on NPR today that when someone is dying, they often don't eat.
 Yes, and in LTC's, individuals with Dementia often refuse many services because of their mental inabilties and incapacities.  

Does that mean a facility can simply ignore the person and their family? Ignore the family's need for consultation and qualified medical conversations?

Who determines when someone is dying in a Long Term Care Facility?  

More importantly, who's in charge? 

The LPN's, the single RN on duty during business hours? 

They're the ones who make the decisions concerning when the Dr is called and for what reasons. 

Only when we finally made contact, finally demanded the Dr be contacted and spoke directly with her did we learn there was  no order to deny food or water and she knew of no reason why this should be withheld. 

The biggest surprise was the Dr had not been contacted by the facility about the "imminent death" observed by the LPN who called us or anyone else.

Mom wasn't even being given an application of a wet cloth to her lips, her face, her hands.  There was not attempt to provide a bed bathing. There was no compassion. There was no human touch unless we asked for a temperature to be taken or her heartbeat listened to.

We had to ask for care giving -- turning her, propping her up on one side and then another. 

Guess they decided there would be no "end of life care" whatsoever. Guess that wasn't their "responsibility"?

It was as though they felt their "job" had ended with what they determined Mom's death was "imminent".  

Oh, they brought in a rolling cart for us with some beverages and nutrition bars and other things. I thought how cruel to have this in sight of Mom but not offer any communication, any touch, any small portion of human kindness.

This "neglect" went on until Mom's final day when a male LPN, who had showed great compassion and concern for Mom, returned to duty and was "assigned" to Mom's room. 

A reprieve.  Someone who would talk with us and who worked with us to make what became Mom's final hours more tolerable for her and for us.

Why didn't we receive a medical doctor's evaluation during these days we spent with Mom trying to cope, trying to sleep,
daughter on the floor and I crawling into the non movable lift chair in its continual reclining position -- difficult to get into and really difficult to get out of and miserable to sleep in?

Advice from those who've walked and grieved alongside a loved one:

If you wonder why your loved one gets sick so much, wonder about the food they eat, the real quality and quantity. 

Don't take it for granted what you see on "special" visitation days in meals is what's always served. The facility is on display; they'll do their best and present their best.

Take note of "changes". Watch for those provisions like food on the floor in refrigerators and pantrys being reduced or eliminated. Missouri State Law requires offering snacks on a regular basis but it was only during and for a short time after the "inspections" Mom's facility followed those mandates.

Our Voices Are Raised -- Raise Yours

It's time we had a list, a readable checklist, of the State provisions for quality care of residents in Long Term Care Facilities. 

Detailed, inclusive, clear and concise language. 

A list we could access and take with us as a checklist to ensure the laws, the rules, the regulations are being adhered to for the safety of our loved ones and ensuring their quality of life is maintained and sustained.

Explicit and detailed. Give us the facts. Give us the right to a life of dignity to the very end.

Thursday, June 6, 2024

Surviving A Predator: Part 1 of 2

In all the years I've had contact with family members, friends and neighbors who've had Dementia there's not one who would choose our family journey.

It takes away the person we were and moves us in directions we do not choose or want to go.

No one I have known wants to "revisit" Dementia, especially Lewy Body Dementia, seldom seen or recognized in its earliest stages.

The diagnosis "tentative" or "grouped" with other types of "possible Dementias".

The journey with Lewy Body Dementia, complex and often unrecognized, even when you live together every day.  

Most of us have heard a friend or a relative say, "Oh, he/she is just in one of his/her "moods". 

"Nothing seems to go right, every little thing seems to upset him/her, they just need more rest, better food and exercise ."

The Internet has opened windows and doors to look through and go through   . .

      If you know where to look for competent advice.

It's like taking a trip to an unknown country with no set date for departure and planning not to return to where you started.

It's been my personal journey that's been most challenging. 

Working with friends and other relatives along the pathway of life where Dementia joins the journey . . .

I've chosen to learn locally and nationally.                         Advocate in my State. Be a "guide" for others.                                                  Sharing information, resources and support.

I encourage others to seek qualified, quality, knowledgeable medical and life changing assistance from individuals, groups and organizations dedicated to providing a better life for people with Dementia and loved ones.

Living with LBD, Lewy Body Dementia, traveling the last life road with my Mom, there were extreme challenges and outside interference with no maps or roadsigns to guide us.

We are learning, knowledge is advancing, new discoveries are made almost every day but the journey remains long and often difficult.

Dementia of any "type" or "kind" can be both a mental and a physical destructive process. 

Science is studying, many major cities have medical facilities working on the challenges and enlightening those who find out about them  on better ways to make this challenging journey.

I encourage you to NOT believe it's a choice and it's not "inevitable" with a family history. 

We do not know the cause, we barely see the effects and there are currently no tests to determine the likelihood or probability of "having Dementia of any type".

Support and follow on line resources in your general community and across the United States -- even into foreign "forward thinking" societies who create and discover ways and means to try to postpone, delay and offset the effects and affects of all types of Dementias.

There are ways to make the journey easier for the person with Dementia and loved ones who support and protect their lives.

Use the Internet to learn, to keep and stay in touch. Carefully read for content and intent. 

Just as there can be "scammers" and "manipulators", as we experienced in places we trust, as we did our Church, they can live next door, down the street or on the Internet.

Find reliable, caring resources but always on guard knowing when we have vulnerability,  whether mental or physical or both, we are prey to those who take advantage of all ages and stages in life.

Julia was our "demon in angel's clothing" -- it was through our Church she came into our home and life changing our belief there is safety in "trusted" places. 

Predators take advantage of life challenges.                       They insert themselves in circumstances& vulnerability.

Some hide their "tracks"very well and you won't see their manipulation and control until they "strike their prey"--it's often not fully visible, may be questionable, and difficult to believe.

They take advantage of and maneuver their prey into positions of more vulnerability striking when least expected and often act as "concerned" and "wanting only the best" for those they prey upon.

Wednesday, June 5, 2024

Set Aside Manipulation and Control

Evaluating an action to be taken, I consider alternatives.
When the path is blocked, I attempt to go around, beside, between and look for ways providing smoother transition with less challenges for  myself and others.

Would that were always possible to get needed results.  
In a “perfect world” where the situation, the people, the times were all in sync, perhaps results would be different.

Continuing to allow the "status quo" put in place by my oldest son disrupts, displaces and decomposes life for me. 
Harm intentionally done to someone without care or consideration of the action or effect is what I've undergone since discovering the deceit of my oldest son.

He does not stand alone
His accomplice stands mostly silent and will most probably disclaim involvement although she participates actively through her refusal to speak up, speak out and change the situation.

I sound negative and some would say "vindictive". 
They can and do live whatever life they choose that does not directly affect my life and my daughter's.

I've tried various approaches and considerations
I’ve sustained injuries, losses and setbacks.

If truth and right were foremost, there would be no problem. Instead we deal with egos, feelings and self before others.
When others are involved, when they stand to lose at whatever cost in time, money or possible damage or injury, I have always taken a stand, fought the battle for however long. 

Growing older we still react, we still respond but we have that “history” behind us with many “what if’s” based on knowledge of what “has been”. I've not wanted to take action but feel time is of the essence. My life has been disrupted since my discovery and that was just a couple of months after my husband's death.

Am I a warrior? Do I seek causes? They come into my life. I don't always see them for the amount of time they will take, the level of involvement and the life experiences and challenges that will follow. Do any of us truly see the future in the present? 

Called to action. Shown the way. Given the choice. Now I'm faced with another decision. With possibilities and with probabilities.

When does a parent stop taking a grown child’s manipulation and control?

Tried to ensure no stone was left unturned as he grew from an infant into adulthood. Afraid, perhaps, not clearing the way, not providing the opportunities he would become like my father, a man lost inside of himself with only a bottle for comfort.

I’ve lived the life. I’ve seen the challenges. I cannot say I truly know or understand my father. My son once asked me to tell him about my father because he’d heard I’d said when he was born how much he looked like my father -- blue eyes and blond hair from two parents with dark hair, one with green eyes and one with hazel.

Genetics. You’re going to look like someone, usually, you’re related to. 

We have choices. We make decisions. We are in many ways the artists of our lives creating the finished work which time and circumstance put before us.

My son lacks empathy. He does not go outside of himself to consider how I felt, being the first in the line from my father, make that the third as he was married before my Mom and somewhere there are two others who called him “Dad”.

He does not consider it’s not about being male or female, it’s about being human.When there is a parent with questionable behaviors it doesn’t matter if they’re male or female or you are male or female, growing up you wonder if you, too, will live your life or succumb to whatever they did to become who they were. 

My son, like so many, is too “self focused”. 
He needs to reorient. I tried. We tried. 

While given many privileges, some would say far more than we should have, he was also given direction, a foundation and life tools. He chooses, he selects, he lives the life he creates. As with many, he chooses what to use, what to pick up and what to set aside.

I will continue to consider what actions to take, when and how. 
It has been a long Winter of life.

When my husband passed, I wrote about feeling like my life was in “jello” – shaken,disturbed and feeling the effects like a constant earthquake accompanied by tsunami’s, hurricanes and tornadoes. 

I knew the sun was there somewhere but the darkness hung like drapes in rooms where they were heavy, musty and always shut to block the sun, the view, the world beyond.

Now, I am gaining the strength to complete a task I started with my oldest son.  

It will most probably be a path I’m forced to walk because he is not a person of reason, a person who wants to communicate, someone who has the ability to set self aside and consider others first.

He is not alone. He walks this path of life with the support of another. It is his choice; it is their choice. Both believe they are moving through life together when they are actually in two separate orbits overlapping.

I cannot chose to support actions that negatively affect the lives of others. It is not just me who is directly affected by his words and actions, he also negatively affects his sister's life as he did his entire birth family for decades.

The decisions he has made will continue to be abusive to me and to others until it is changed. 

I know I must be the agent of change and yet I know the journey will be one I would prefer not to take.

Once I begin, this time I must continue until the resolution removes the abuse and returns my rights directly to me, not through him.

Each year that passes I hope he finds the courage it takes to see the reality of actions taken and opportunities set aside.

I understand, my very being reminds him of times past and actions he took harming those who gave him life and more.

Another beginning. 
An awakening of self. 
A rerouting in my life's journey.
Time lost. His choice. Sadly.