Sunday, October 6, 2019

Reaching Out, Touching Lives, Making A Difference

Met with another daughter of a mother with Lewy Body Dementia earlier today. Julie was her name. 

How strange. Julia -- with an "a' was the name of the woman who abused Mom and claimed I was the abuser -- see many entries about this nightmare created by a woman who is still licensed as an RN and to my knowledge is still "providing care giving services" to Seniors. 

Wonder if she's still focused on working with those whose children live out of State -- or did her experience with me and Mom show her she could "expand" safely even into families that were multigenerational?

Julia reapplied to the State of Missouri and reactivated her expired RN license -- it made her a "required" and UNQUESTIONED mandated reporter of "elder abuse".

She'd told me once...well before the time when she came into our immediate family life.....she often helped them "get rid of things" and even helped to "move them into facilities".

How convenient, I think now.  Get their and their children's trust and confidence, then you can move in to move on to your next "conquest"?

Julia decided, in my opinion,Mom was a "good mark" to exploit and I, who had the same name as her mother, someone she did not have a good relationship with, "deserved" to be separated from my mother. 

Those are the conclusions I've drawn with the passing of years since Mom's death.

I've had a slight "aversion" to that name ever since -- know I shouldn't but if you read about how she manipulated, controlled and destroyed the life we had as a multigenerational family for almost four decades -- you'll understand.

Checking this Blog; wondering if it's still "being read" meaning reaching someone, somewhere who is struggling with understanding and going through the "jello" of LBD or even other types of Dementia, I saw someone had just read the entry dated Sunday, April 20, 2014 (wow.....over five years ago) and titled: Constructing Change: Teepa Snow, Whoopi Goldberg, Kelsey Grammar

Although there have been new discoveries about the brain and about Dementia, including Lewy Body Dementia, in the more than five years that have passed since I wrote the entry, it's still relevant and useful as are my other varied entries to date spanning over seven years.

I met with Julie today after she reached out to me from an entry I made on line in a "local" Neighborhood chat site where people ask for help with many things including care giving for loved ones.

She'd been to a Neurologist and so many others who had no real clue about what was going on or misdiagnosed what they saw as so many other afflictions.

We sat and talked about where she is with her Mom. She'd just been told by their Primary Care Doctor her Mom had Lewy Body Dementia with Parkinsons.

FASCINATING. And he was with one of the three associated hospitals of the main hospital where I first saw the words as a diagnosis of Lewy Body Dementia, possibly mid to late, after Mom was hospitalized with a urinary tract infection.


We are succeeding in raising awareness about this debilitating medical challenge.

I asked her where her Mom had been "placed" in the measuring of "how far along" with the challenge and she said he hadn't mentioned.

I encouraged her to reconnect with the Dr and ask for a further diagnosis as to whether it was, in his medical opinion, early, mid or late stage.



We live with it every day. It's at the top of our life's list.

We need your "engagement" in our challenge.

We need you to "become involved" more directly, with greater consideration of OUR NEED TO KNOW, TO that we can shift this burden to a more manageable load as we continue to walk with and beside family members and friends as they walk this ever varying road called LEWY BODY DEMENTIA.

SCARY, TOO.  Misdiagnosis can lead to providing medications that can cause severe damage and bad reactions and unfortunately.....even death.

i realize Lewy Body Dementia is difficult to determine but you, the medical community simply need to put more value on this disease as has been previously placed on others and we'll have more ability to manage, if not control, its effects and affects.

It's time to be informed about ALL the  "TYPES" of Dementia. 


And....I have to admit....

What surprised me was when Julie told me she had to wait a year to "get into the program" at the hospital to go through more analysis of the disease.



Or maybe we do? Although my personal recent experience has been medical facilities for two friends acted quickly when they were discovered to have Cancer.

Or, is it because Julie's mother is fortunate. She's in an Assisted Living facility, a nice one -- although as Julie said, she's not really sure how "hands on" and "capable" they are.

We talked about the three levels of living for Seniors -- Independent, Assisted and Long Term -- and the State requirements for residency by individuals in their levels of capability or need.

Julie's Mom is one of the more fortunate as she has good Insurance Coverage -- few people do -- for these services.

Perhaps the Dr. felt there were limited spaces in the program and because the mother was in a residential care facility the "immediate need to know" the level of the Mother's Dementia and any "assistance" was perhaps not as "urgent" as for others.

OR.....perhaps the Doctor believes the woman is really doing better than she actually is.

Although he could see the LBD and noticed the symptoms of the shaking (labled as Parkinson's), he might not realize TIME IS OF THE ESSENCE.

People with LBD who are provided with mental stimulation, environments providing levels of mental challenge that works for the individual with physical activity and interaction that stimulates -- even attempting new skills or additional skillsets -- CAN POSITIVELY AFFECT THE  DISEASE PROGRESSION AND STAVE OFF MORE RAPID PROGRESSION.

Yes, it works. We watched it work. 

We didn't realize it at the time because we did not know about LBD but daughter and I now know we effectively helped Mom to live longer and a better life because of what we did for and with her.

And -- quality of food and types of food

And -- keeping mind and body active.

We could not stop the disease that is Dementia -- and that is what it is, just like Cancer which we're told "lies in wait in our bodies".

We gave Mom an environment that stimulated her mind and body and we found that even when she had periods of Aphasia, as mentioned in another article I wrote, she retained more independence and capability.

It was a difficult journey. The memories still present challenges. 

I would not have asked to live many times in life I've been given but I am grateful I was also, somehow, provided then and now with the ability to find ways to be of service to others who walked, are walking and will walk this disruptive life path.