Saturday, September 30, 2023

Will I Also Join The LBD Journey?

Living with a "third party" who arrives, turns your life upside down, and was not welcome in the first place, provides daily stress, constant adjustment and concerns that often overwhelm the strongest among us is confusing, stressful and exhausting to go through. a nutshell...was/is/will be?... Lewy Body Dementia for me? 

The obstacles, amount of disinterest and lack of funding to protect the general population from Abuse, Misuse and Real Ignorance.

It's  the challenge we face daily when Dementia doesn't just join our lies, it RULES our lives.

When there are no laws, no safety-nets, no systems, no departments who will listen, our society becomes Neanderthal.

 n a world where manipulators, controllers  see opportunity and there is no one, no group, no organization where the innocent, the accused, who caregive with no financial gain, no benefit, ARE ACCUSED WITHOUT MERIT, WITHOUT SUBSTANCE -- we live in fear of asking for, much less accepting, assistance.

Contrary to what many believe, it's not over when your loved one is no longer with you especially if you've lived the life, fought the fight and endured the "times" which you pray will change ... sooner .... rather than later.

We were consumed with the day to day coping and little available information.

It was the struggle to lift life beyond the sticky mess being created daily interrupting and constantly changing time, finances, abilities, relationships, life in general, never knowing what would come next.

Surrounded by family and friends who "passed into and out of our lives" but never really spent any time within the confining walls of daily living and coping with LEWY BODY DEMENTIA.

We experienced some very insightful times I may write about  --but then again, perhaps not, as some of it might be too much "lifting the curtain" to do. 

We're both (adult daughter and myself )growing older and the difference is we both know there's another influencer potentially in our lives -- Lewy Body Dementia.   

First Reaction -- FEAR OF TOMORROW.

 If you watched a parent/grandparent "go through" what appeared to be "idiosyncrasies" you really should investigate the subject of Dementia because chances are . . . 


Do you know what's going on "behind closed doors" in research on Dementia, especially those more "hidden" & "less obvious" like LBD?

Do you understand it's currently not controllable; often not recognizable and can be financially and physically debilitating?

When . . . 

Your journey with a loved one changes from their being in your life to no longer with you, 

There are the stages of grief you go through and always the question that begins "What If?"

You lose two immediate family members at separate times for "medical reasons" or complications thereof,

You're trying to cope with the ever growing changes...

I took what you might call a "sabbatical" from this site as COVID weaved in and out of our lives, my daughter and mine, and think it was beneficial. 

Picking up the "pieces" I now continue, admittedly a few years later, it's now September, 2023. 

I started "journaling" albeit not regularly, in 2013. Ten Years Ago. 

For a long time it was just a way to find a small amount of time to set down thoughts and concerns. 

It wasn't a journal, kept specifically for any purpose, it was a hope someday in the future I would find it had helped in some small way    to make the journey less formidable, more knowledgeable.

WHERE ARE THE DEATH STATS DURNG THE COVID EPIDEMIC.  Not visible, "swept under", closed doors to facilities where "real information" has never been easy to access or find.


Kennels, Rescue Facilities of Animals have visibility on Tik Tok as do caregiving for Animals.

WHEN HAVE YOU EVER SEEN ANYONE, EXCEPT DURING COVID, crack open the door to Long Term Care facilities, letting just a few sounds, smells, visions -- of their reality?

A STATE CERTIFIED, FEDERALLY FUNDED Long Term Care Facility is NOT AN OPEN ENVIRONMENT and neither is a Private Care Facility.


there are health laws for food, humane treatment laws for animals, protection from many misuses of authority ---

WHEN IT COMES TO DEMENTIA AND CARE GIVING FOR THOSE IN NEED -- the laws are few, far between, antiquated unknown, "hidden" in legalese and fine print.

FAMILY MEMBERS are "visitors" and only those specifically legally designated are listened to, but not heard -- by the facility -- relegated to resident interviews generally NOT ANNOUNCED and results of any and all findings, even for those with POA in many States, not provided with or give access to, daily records.


You have lived together for almost forty years as a multi generational family.

A "slightly known person, who has a "personal agenda", "suddenly" re-activates her RN status AND REPORTS YOU, for exactly what, you're "not allowed to know", and takes steps to "convince" the State there is suddenly"elder abuse" in a family that's lived together FOR OVER FORTY YEARS.

How can this possibly happen, you wonder? False, misleading and deceptive actions and statements occur all the time. An archaic system with no checks & balances, no questioning, and "reacitionary" rather than "investigative" makes major errors.

Managing the day to day of personal care and caregiving is a "job" It's unpaid, disrespected and overlooked when calculating the "value" given to society and individuals.


Looking the other way has been practiced for centuries.

Moving the challenge to being a "responsibility" of others.

Believing it's not "my" problem and won't be "for a long time".

Ignoring, overlooking, minimizing and closing eyes to not see.

Planning and mis-believing all possibilities are covered.

We're all so busy with today, we've moved past yesterday; tomorrow, well, I'm doing the best I can, based on the times and the circumstances and my abilities.


My journey into enlightenment, knowledge and taking action to create change, one person at a time, began mostly post LBD.

Life dished up many variations of challenges, necessities and even opportunities as they probably have for you.

Considering Dementia as a life path was not top of the list.

Thursday, September 14, 2023

Run Run As Fast As We Can -- COVID 19's On The Rise Again

Lest We Forget -- COVID was a warning; wrote the content of most of this entry April 30, 2020 during the disease's morphing as it would continue without full realization and recognition by growing numbers who believed "the worst was past".  

We "slipped into" believing it "will pass" and "be over" and all will "return to normal again".

Diseases morph and change; sometimes for the better, sometimes they take on new shapes, forms and provide more challenges.

We were a Nation always on the move except for the last several weeks when "restrictions" were put in place in all States to try to stop the rapid advance of the killing fields of COVID-19.

Some States seemed to "play down" and even "push aside" their statistics; they appeared to believe if they didn't "talk about it" the significance and effect would be lower.


while appearing to be giving information and statistics to "prove" the voracity of what self serving areas know they must have to "survive".

Interesting how we started "trusting" heads of State governments and bobbing our heads up and down in agreement ....if what they say will take us out of this boring situation full of challenges and change.

States asserted their rights and decided to ease or remove in part or in whole the restrictions to stay home and some schools are even talking about restarting, classes during the Summer or other "possibilities" to resume "in person" teaching.

TICK. TOCK. We can't bear to watch the clock, we can't bear to be "confined" and so we start to let slide common sense, caring about others and --just-- return to normal --because deaths are going down, hospitalizations are falling....or are they?


Listening to the Governor of Florida cite statistics about admissions to hospitals going down and the many "actions" taken to "protect" Florida's extensive Long Term Care population; what will we actually discover once this time has passed about the lockdowns, refusal to allow contact and actual number of deaths attributable to living conditions unacceptable during the best of times, killing fields during the worst of times.

A little slippage, a few lawsuits. If it had been nurseries, there would have been a mass picketing of the medical facilities but if there were, we did not hear just as LTC's were quick to "discount" their high death tolls to "the cost of aging" the hospitals just referred to a "higher mortality rate" due to other factors like age of the mother, lack of medical care or nationality.

Many returned to using mass and individual transportation to go where they want, when they  want or need to 24/7 in major metropolitan areas and small rural communities as well. Deaths increased but people became "oblivious" if it didn't directly affect them or a family member. We'd grown a "second skin" and it was "us" versus "them".

PREDICTION:  This major life event will be replaced by others, more tragic, more traumatic, and then those will be historical and others will rise to the top. 

Lessons. We don't really learn them. Many ignore the time and the lesson knowing we'll move past or at least some of us will. 

Deaths don't matter. If a friend, well, that just happens, doesn't it? They'll be missed. A family member? We mourn, we recall, we move forward -- seldom do we ask "why". 

Acceptance allows return to recycling more chaos.

Ignorence is NOT best and neither is Ignoring.

Tuesday, September 5, 2023

Boomers -- NOT following in the footsteps of The Silent Generation

Remember the movie where the person hangs out the window and shouts, "I'm mad as HELL.. and I'm NOT going to take it anymore"? 

It's time for Senior Home Owners to raise their voices against Senior Discrimination -- a rising force against many of our most vulnerable members of society.

Insistance a specific type of housing is a "right" of one "class of people" verges on  a way of life we've fought against for centuries.

Taking over a home, "land grabs", being designed as "rights" or "entitlement" are concerning.

The Generation surviving predatory financing practices is now faced with anger and frustration surrounding what they believe is "a right" -- home ownership.

Where is it written attaining a specific age in life comes with any "guarantees"?

Under a mask of "what's better for a specific group, a huge increase in multi-storied, buy in "residences" with month to month "occupancy" -- aka 'apartments" with a different "spin" for those 65 and older -- is a financial gain for a select few  and a financial burden increasing dependency for many.

Taking your turn has morphed into a movement to verbally force Seniors to sell their homes to younger generations. 

"Property investors", those who once were individuals who saw an opportunity for a little additional income to buy a "second house", often in a "vacation area", for their own enjoyment and to make a little extra income. have turned to seeing housing as a financial base for income or an expense to adjust taxation.

Those same investor individuals and groups have now seized on buying houses and apartments for one of two reasons: (1) a stream of income and/or (2) a means of tax deductions.

We've moved from personal "body parts" shameing to shameing our Senior Population for "living the American Dream" of continuing home ownership they've earned, planned for and looked forward to enjoying in their "older years".

Entitlement has moved "what I want, when I want it" or I'll have a "tantrum" from children of all ages and stages to adults continuing to put their "wants" and "desires" ahead of their parents and grandparents.

This MOST concerning practice is becoming an undercurrent of "financial planning" that will most likely cause significant challenges for many.

Some societies with very different types of government have placed and still operate on the basis of "perceived need by the governing entity" and "for those who are deemed as worthy of having this benefit due to position or who they serve". 

Controversial? Off the Wall? UnAmerican? 

It's time we stopped talking to ourselves and believing it will all work out because what we see in "the system" of Care For The "Aging" is mainly shelving, removing from general sight and drugging many beyond their needs or wants.

Our children and grandchildren are next in line and if they don't see now, they'll feel later, perhaps with more restrictions, requirements and resolutions to ensure THEIR generation is the one to move in the direction "wanted" and "needed".

Turn off, tune out if you want, but all ages are moving towards this time and it's not a vacation, no matter what THEY tell you.

These "new living facilities" that are structured for Seniors -- who has authority on their actions and practices? The ones where you "offer up" a "deposit" of $5,000 (yes, obviously meant for those "middle to upper level" Seniors) and you gain a "ticket" to socialize and "get to know" others who have done the same. 

Aren't they just glorified apartment complexes for "old" people? 

A way to get them to move out of their homes and "make way" for other generations? 

Move Seniors out of developed neighborhoods with various in place "conveniences", familiar surroundings and PRIVACY. . .Into multi storied buildings, dependent on elevators . . . or for cost concerns, only outside steps they'll be able to negotiate FOR A FEW MORE YEARS AT MOST

Seniors are being "blamed" for escalating home and property prices. 

INTERESTING SHIFTING of RESPONSIBLITY. A tactic used by bullies and those who want to monopolize -- blame the most vulnerable, the least protected.

Get an apartment, a condo, move to Florida or another area where Seniors are "grouped together" -- as though we need to isolate this very active and actionable group of people. 

NO REAL natural greenery to care for and about . . .  

A room or two . . . that's all "YOU" need

Those are the many, there are the few that are "home like" and even stand alone or are duplexes BUT these are the exception AND THEY COME WITH A HIGH INVESTMENT USUALLY THE ENTIRE SINGLE FAMILY HOME INVESTMENT. 


A HOME with rooms and outside space to move around, provide ability to recall and remember

A PLACE to sit in a private setting, without having to accommodate someone else's wants and needs -- there becomes small area with limited personal space. 

BOOMERS  (thankfully most have removed the word "baby" as we certainly do not qualify for use of that word except when born) . . . 

CREATED disruption, disenchantment, disbelief and questioning authority -- among great discoveries and practices for the good of all the world and pushed for diversification and acceptance of all races, beliefs, life styles.

Hey...maybe that's the "real concern" -- we demonstrated, we went the full mile in protesting -- mostly peacefully -- for human rights. We're still doing it!

Boomers hid under desks told they could survive an Atomic Bomb if they did; followed in other's footsteps only walking in different more varied directions; reached out over barriers of time and into space, marched in protests, joined in Hands Across America and opened the doors of the world, one trip at a time

We Started The Fire . . . for truth, for acceptance, for inclusion, for disrupting. 

On Boomer's and earlier generation's shoulders, the world used sight, sound and unity to create needed change including acceptance and inclusion.

Those "babies" made disruptive waves long before it was acceptable and felt the anger and frustration of a society determined to mold them and change them.

Here to tell you" they" didn't succeed. Our eyes were opened. Life does that to you.

Other generations had Wars overseas, we had a War building and raging at home. 

Children were subjected to being "taught" exactly what to believe and had no computer to "seek truth"

Books were banned or "held aside" and had to be requested only to be released with "parental approval" -- SOUND FAMILIAR?

Let's not reverse history and hide books, ban them or even have a "bonfire". 

That's past behavior based on control and manipulation. 

Tweens became teens, twenty somethings, thirties parents, forties approaching a less "desired" age group -- like their parents and then moved, following their parents, into the "shelving age group" of the sixties and beyond.


BOOMERS  fought stereotypes and demanding practices and taught our children the value of the land, the water, the air.

Let's move forward, not backward; BOOMERS struggled to get "change" by opening the windows and doors to see what others wanted to limit and eliminate. 


Do not set aside or only recognize us when we pass as what remains is what you have for when you walk in our place.