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.