Tuesday, February 11, 2025

LBD Changes The Brain

Mom's LBD reminded me of an experimental music presentation.

It changed how she spoke.

I once heard many dissonant chords my ear and brain had difficulty accepting.

Today, I see an underlying relationship of notes.

The arrangement, the sequence and even the sounds can be sequential and logical or varied and confusing. 

Having Aphasia also makes carrying on a conversation with Mom both interesting and frustrating. 

Mom inserts sounds and gives them various meanings

"Haska" is one of her favorite words. 
Just when we think we understand what she's using it to describe (a specific place she's going to; a hallucinatory place she's developed in her life) she may use it in another way.

Ha Ha (not a laugh, a type of "membership" in a Haska)
Wa Wa (membership in another group, not a Haska and apparently quite contrary to the Ha Ha group). 

Fascinating when you realize there are "values" associated to words that seem random to family members and visitors.

They have meaning to the speaker and theres's still a level of ability to set personal values even with adjusted words.

She may use the same sound combinations in a sentence where they have another meaning and we're left guessing what new identity they've taken on. 

There was never a "dull moment". 

I smile and even laugh today; back then it was confusing and even upsetting to listen and watch; we did not understand this was her brain trying to express, sort and communicate.

Now, I realize it was a sign of the Dementia.

Words were inserted into sentences as though they belong in a specific place and have a specific meaning. 
It's not random; it's as though the brain is simply substituting.

I often read about other LBD people who've been highly productive, intelligent and involved in life.

I wonder if having an active and capable brain causes the long roller coaster ride until it finally totally engulfs and destroys --often in the very last breaths of life.

My oldest son believed I was keeping Mom from talking with him. Hundreds of miles away, no "Zoom" back then.

Reality was a Cell Phone was "new" to her and she would press buttons ending conversations when she could not hear or understand what was being said.

Those who live long distances from someone with Dementia, who do not have personal interaction, often blame those who caregive of many negative actions.

The phone was small. The coordination needed to hold it, trying to locate the button to "connect" or "disconnect" was gone.

My oldest son claimed we "took away" his Grandmother's phone and wouldn't let him talk with her. Far from the truth.

Time passed and even if she was in the room and the room phone was allowed to ring many times, she didn't answer. 

When daughter or I called, we thought she wasn't in her room, perhaps too far away, in the bathroom, for example.

When you love someone, you sometimes look past what's in plain sight including mental, emotional and physical changes.

For a period of time Mom could speak on the room phone.

Watching and listening, hearing and more fully noticing various progressions or lessening of skillsets, I believe she was progressing in deterioration/loss of various processing skillsets

She'd often pick up the phone and didn't know which end to speak into and which end for her ear. 

Mom was still good at "covering up" and had the ability to laugh at herself; she sometimes realized the phone was wrong side up for listening/speaking. 

The Dementia progressed to where she did not have this recognition.

Mom never ceased to amaze me, though. I'd spend time with her, notice what I felt were changes, think they're now a fixed behavior and then on another visit, not necessarily the next, that change would not be evident.


This was one of the "masks" I've talked about with Lewy Body Dementia; off and on, sometimes fixed sometimes loose, never knowing who was really there.

Mom seemed to stare a lot more than she used to. 


Yes, she had sight challenges and the hallucinations made that condition even more challenging. 

Or, could medications Mom was receiving produce these "side effects" and we didn't realize?

She fixed her gaze more often and seemed to be staring off into space without appearing to be thinking or focusing on anything, trance like. Dementia or medications?

We've all "drifted off" from time to time on a thought or concern. 

This is how Lewy Body Dementia can affect in later stages and so we assigned this for years to LBD when maybe we were wrong, it could have been the "Meds".

We made many "missteps". Daughter and I tried to remedy as we moved towards "unknown" parts of aging and what is holds.

Mom remembered certain actions needed to be taken but while in the process of doing the action would reverse her actions and undo what she'd done. 


She usually remembered she's supposed to lock her wheelchair before attempting to transfer to her chair.

She'll lock the brakes, move her hands and then believe she's not locked them and unlocks them. 

Hindsight is always so much clearer. Advancements in the short time since I started writing this Blog, in the field of Neurology & Lewy Body Dementia, have moved light years ahead. 


Today . . .  
I've somehow gathered the courage to "go public" with our challenges and share the problems and the possibilities we uncovered along the way.

I look even farther forward to the additional ways I can add to more individual walks along the paths we maneuvered so precariously.


Mom loved to read and she was a life long learner. 

I know she would be pleased to see what we've accomplished and how we're working to resolve problems that still exist and challenges we continue to witness and encounter.

Life is a process, it's full of surprises, Mom would say. 
The best surprise: finding others who share your journey.

Originally Published December 29, 2014. 
Mom's "100thyear". She passed the prior January.    
                                                                                                                                      Originally started September 7, 2013. 
Mom was still very much with us. 

Friday, February 7, 2025

Time In A Bottle

We move in circles in life that sometimes overlap and sometimes open to join with another.

Closed circles are created by life's happening. 

Open circles are often privileges and choices of time and money.

Saturday. Errands to run. Places to go out of necessity. A few hours to call our own.

Let's explore. There's an AP for that -- provided, of course, you have the money to pay for the phone and the service that opens this world to you.

We now do. We use these "advantages". There are a few things we could use in the house. Items we simply don't want to pay "full retail" or even "discounted retail" for. 

It's fascinating really. Coming from a generation taught to consume, taught to want, to expect and to desire so much in life. Taught to go to stores and "shop til you drop". 

Never fully embracing but still participating, we followed the leaders and trends imitating parents and friends.

Full circle. Millenials are teaching society new ways including bartering, trade, cross generational support, multigenerational living

We were the great hope of the economy. Parents and relatives back from wars, many undeclared or referred to as "conflicts". Houses. Suburbia. Marriage and families. 

Needs and wants. Hopes and dreams. 

The wheel of life, the wheel of consumerism and economic development. Privilege. Freedom. Opportunity.

We began as a society as season changing and life changing consumers. 

Then came the great ability to shop not only in specialized areas like downtown, suburban malls -- along with some small neighborhood "mom and pop" stores -- now we could expand into the internet -- a more up to date and "glorified" catalogue shopping experience.

Instant and immediate gratification. The acquistion became more than the possession.

It amazes me how new generations think they've invented something when what they've really done is regrouped, reorganized and readjusted many systems, procedures and practices.

Friday, January 31, 2025

Cemetarial Reflection

Two months ago we joked and laughed.                                                                          A week ago his time had passed.

Kept telling myself he's strong he will last.                                                                   Knew better as "she" continued to Harass.

What little he had she coveted and used.                                                                         He couldn't see past her work to confuse.

His life was the last part,                                                                                                 He'd already given his heart.

We live to love and love to live.                                                                                         It matters not what we just give.                                                           

Seeing only what we choose.                                                                                         Set up to fall, made to lose.                                                      

Predators surround and confuse.                                                                                 Knowing in the end the weak can't refuse.

To be seen and heard after silence prevails.                                                                   Gives hope for a future if we just "lift" the veil.

His need to be wanted.                                                                                                 Confused with her greed.                                 

So many Seniors.                                                                                                             Not enough time.

The State  cannot handle.                                                                                              It's a swift rising tide.

Generations raise voices.                                                                                           Giving Seniors no choices.

Told their lives are less.                                                                                                   They've failed the last test.

The young see work --                                                                                                      As what they choose.

Not seeing they are --                                                                                                    Being set up to lose.

They "follow the leader".                                                                                                  Looking ahead, never back.

Believing they set the pace.                                                                                         Always at the front of the pack.

Not seeing their choices                                                                                                   Move ahead of today

Waiting in shadows . . .                                                                                                   For the newest "prey" .                                 

Thursday, January 30, 2025

Tarnished Golden Years

Plowed the fields                                                                                                       Cleaned the toilets                                                                                                   Survived the births                                                                                                     Fought the battles

Shared the bread

Saved the water

Found the money

Paved the way

 

Treated like a commodity

Told we have little value

Pushed to leave "our space”

Shelved as “out of date”

 

Predators circle

Smelling sweet success

Family far away

 

Tricks no treats 

Circling, following, pouncing

Waiting, watching, wondering

 

Youth is blind

Middle Age wears an eye patch

Old Age is told what to see

Thursday, January 23, 2025

Boomers Pave The Way

As a society, 
we tend to assign behaviors, 
attitudes, beliefs and practices 
to specific age groups 
across the board. 

Listen to a forty something 
when he/she forgets 
a word or a phrase 
jokingly refers to this 
"missed memory" 
as a "Senior Moment".

Boomers are "booed" 
by many 
as "taking up space", 
"hoarding the best houses", 
increased consumption.

Never have I ever heard 
so much discord directed 
at an age group 
as I have by those 
who owe their lives 
to many who came before.

A constant complaint about
the "cost" of a generation 
who gave so much,  
started with so little.

Having the courage 
of their fathers
and their mothers 
to climb life's ladder, 
open doors 
for all coming behind.

We marched, we picketed, 
we raised our voices . . . 
in meetings, 
on land line phones, 
in stick shift cars, 
riding buses long distances,
for Freedom and Equality.

Our songs 
presented the problems, 
challenges of the times.

We held 
Hands across America
with our children 
standing beside
showing unity, 
community.

We started many causes,
saw many needs.
Working then and now 
to create a better world.

Raising awareness 
of those who work 
to tear us apart.

Boomers were once 
the "golden children".
On their way 
"up the ladder to a
life of comfort & benefit."

Boomers went to College. 
Even if it was 
the "new" Community College.
Created to accommodate 
the high numbers of births
after the War.
Needing preparation 
for "tomorrow's world".

Females whose mothers worked 
on assembly lines for our troops, 
walked together, advanced programs 
and started diversity & inclusion.

They had sons & daughters,
worked as teachers, 
in offices and on Boards;
stepped across lines, 
pioneered, led the way, 
showing the best directions.

The trend was moving women 
from assembly to check-out lines.

Away from the "Big City" to suburbs
to the not long ago vacant fields 
now filled with 
"little houses on the hillside, 
little houses made of ticky tack",
and the suburban shopping centers.

Those now "funny looking" 
aging men & women 
fought for freedom, 
came home to work crazy shifts, 
tried to advance 
on a ladder constantly moved 
towards higher & higher 
education, training.

Suburban housing developments
were created and gave rise to
"Millionaire Businesses" 
from services 
to retail 
and Credit Cards.

No more walking 
to the "corner store" 
or grabbing a bus 
or "trolley".
 
One car for work,
another for 
"the lady of the house".

The automobile 
became necessary
to get to 
the Malls and Strip Centers
where spending 
became a pastime for some 
and a necessity for others.

Then "the lady" 
did the unthinkable
She went to college. . .  
She competed for jobs . . .  
once "belonging" to "men". 

Did they really "spend" 
more than they made 
as many now accuse? 

Assembly lines faded, 
more giant high rise 
office buildings grew.

A "Brave NewWorld" 
develops with computers 
and home delivery.

With so much emphasis on AI, 
kids are being praised,
become popular, 
as they adapt and embrace
the art/science of AI.

Video games, 
programs encouraging winning, 
gambling, knocking things around -- 
and we wonder where all the "violence" 
we see and hear about has "come from". 

Ever hear a young friend/relative 
refer to some being"just like" 
Mom, Dad, Grandma, Grandpa, 
when there's a forgetful moment?

"Individuals" 
is how the vast majority 
of people want to be seen.
                           
Instead, we measure, categorize, 
assign and place people in Stats.

Society decides what's "typical" 
and the "bar" often moves.

Using polls, questionaires, 
even medical records.
Supplying information 
for behaviours, conditions.

Like any other statistical 
or marketing poll, 
you get out of it 
what you put into it, 
often producing inaccurate, 
insufficient guidelines.

Dr Benjamin Spock
might be the cause 
of Statistical Reasoning.
 
Unless you're a member 
of the Boomer Generation  
you probably do not recognize 
the name of this very prominent 
physician, writer, 
and a top Influencer of his time.

He was the first medical professional, 
a pediatrician, to "characterize"
or "group" children's ages.

You may recall the "Terrible Two's". 
Advice from infancy through adolescence.

Dr Benjamin Spock, 
taught another lesson to Boomer mothers.
  
He championed the concept 
of continual learning, 
growing, developing,
and being "care givers" 
for another generation.

It's anticipated and believed 
the child will "outgrow" 
certain actions and reactions 
with direction or intervention.

Today, we embrace
a different approach.

Those machines 
we constantly have our fingers on 
are there to retrain and restructure 
according to whoever controls them.

Society in general 
doesn't believe 
the aging adult 
is going to 
"get" better or "outgrow" 
actions or behaviours.

We are taught to believe 
the aging are all moving into 
that valley, that depth of life 
where only memory loss 
and physical loss of capability exist.

It is inevitable and non-reversible
to be expected and anticipated

One benefit of AI
is 24/7 ability
to use resources
to gain knowledge
to understand.

Boomers are not Aging As Expected. 
They're not sitting 
in rocking chairs on front porches.
Many hold out on going quietly 
into homes for the aging.

Boomers set a different path 
listening to a different drummer.

Boomers marched, picketed 
and their music 
reflected the conflicts 
and the challenges of the times.

A generation 
forming large groups of protestors 
to bring to light wrongs 
to work to bring about change. 

Boomers continue 
to honor those who went before them.
Aging as they choose to age.
Rejecting stereotypes,
Working for understanding.

LOOK OUT WORLD. 
Senior Moments 
change and create 
the world as we NEED it to be. 

Millennials may be the turning point; 
Baby Boomers are the force to be reckoned with.

Fine wines are aged. 
Human Aging is like a fine wine.
Boomers Pave The Way
Building highways into tomorrow. 

Sunday, January 19, 2025

Masked Faces

Cell phone pictures can be chronicles of life and death.

How often we "put on a face" in life. Smile for the camera!
See the surprise, love, caring, passing of time on her face.

I just went through pictures of Mom.
In boxes & on my phone.                                                                                     Snapshots over the years of her life, our life together.

In later years so many pictures of Mom "daydreaming".
Appearing to be somewhere within her mind, 
With us sometimes briefly and sometimes deeply.

Her eye focus changed.
I see that now.
 
Her facial expressions lessened.
Smiling, reacting to common daily actions faded, slowly at first.

After her last birthday, we noticed she was losing                                                      the ability to remember common actions.

She didn't understand how to take the wrapping paper off a                                         present and couldn't open the untaped box with new clothes. 

Mom always tried to open packages with great care.                                                      trying to "keep the paper intact to use again".         

Valuing, knowing the end of times come without warning.
Being prepared meant survival and continuing.

A child of very little means growing up. 
A young woman during the Depression.
 
She taught us to "use it up, repair it, make do or do without".                              Lessons for survival providing more than we'd ever expected.

I remember her ability to communicate and even seem to be cognizant to one degree or another up until about two weeks prior to her passing. 

No one prepares you for this major capability change.

My first entry was "When the Child Becomes The Mother" back on April 8, 2013. 

As I re-read this and other entries I know the time has passed.
It just doesn't seem possible it's more than a decade.

I had no idea then it would be less than a year after that date Mom would leave this life. 

Looking back, reversing roles started long before that date;  many adjustments to ensure her safety and personal well being.

Subtle messages of what was to come. Trying to survive, work, visit her every day, we didn't clearly see what was happening before our eyes. 

Life moves in multiple directions all at one time.

LBD is a MASK like those worn for Carnival or Halloween.  
(Today, I can also reference the masks we wore during COVID.)

It's often like those with a stick someone puts in front of their face meant to hold it in place or it can be removed to see the "real" person underneath.

Later, it appears to be the kind that are put on and have a ribbon to tie in the back you can lossen to drop down or remove.

As time passes, the MASK becomes the type with the stretchable band around your head or ears.

It's always there sometimes slipping down or confusing others as to who you see and who you don't.

With LBD it only goes down the front of your face and remains around your neck.

Then, the MASK changes completely and it's painted on the face; always there, always prominent.

We had no roadmap to guide us, no specifics as to this disease's progression in behaviours and observations.
We were constantly guessing as to what to do, how to act.

We had decisions to make to ensure we provided for and protected Mom -- from herself and often from the acts of others who simply did not care to find out about Dementia. 

And, because no one ever counseled us or provided any information about Dementia, we wandered through this time as though in a fog looking for the Sun and a little light.

We took pictures and we took videos. At the time, many, to try to understand and explain to my son, who couldn't be with us, his Grandmother's actions and behaviors on any given day.

Often, especially in the beginning of her "last" months, her ability to talk and "fake" responses through common comments and even through appropriate responses (son:  Love you Grandma! Mom: Love you, too!) caused him to still question his grandmother's deteriorating health and the effects of the LBD.

We took pictures to chronicle the numerous challenges we faced with Mom's Skilled Nursing Facility.

Highly recommend anyone with a loved one in a facility take advantage of the ability to chronicle/document what few people see, hear about, or realize.

Lewy Body Dementia doesn't just place masks on those whose bodies it invades, it puts masks on SNC staff and everyone who attends the men and women who live there.

(The above was originally written March 14, 2014) 
Very little has changed and this is January, 2025. 
Darkness surrounds Dementia of all types.

I continue my journey shining light as I go. 
Attending conferences, meetings online and in person.
I want to raise funding. My pockets are not deep. 

Advocating, Raising Awareness.
Encouraging others to seek counsel.
Support their walk with loved ones
Pointing the way to resources I share.

Amazed these words are being seen around the world.

Realizing we share concern for one another.

Grateful to see I am not alone and my words can give hope to others as I continue this journey I feel I've been given for a reason and a purpose.

Saturday, January 18, 2025

Asset To Society -- A Scary Phrase

Who defines "value" in humans -- of any age.
To who do we apply this "measure"?
This gift of long life which we used to highly treasure?

To aged 16 who tell us they can drive so let them vote...
Raise the level of responsibility, consequences, too.
Bear the costs of your demands to be "grown"
Get out there on your own!

Give Us Your Homes! 
Scream the youngest climbing the hill.
They have no wisdom, only the "will"

We live in the future you live in the past
Our ways gave you hope to not be "the last".

We are rising, we want, we need, we deserve
You've given, you've gotten, now we need to be served.
Go To  "Aging Communities" where over the Hill
Defines 40 as verging on needing more pills.

Move on, move away, 
You've taken and had.
NOW . . .  give up, give in, give it . . . to "ME"
We want what we want,
You've taught us this way

We won't wait . . . NOT a single more day
Most of all -- GO AWAY
Who makes these decisions, these policies?
Look ahead and behind and surely you'll see. . .
 
Generations before were taught "you have to wait"
Today we teach youth it's all within your grasp
Just reach out and you'll have . . . 
Whatever you want is yours for the taking . . . 
It isn't always necessary you do the making.

Where are YOU on this journey of self over others?
If you aren't included, raise your voice
The others are shouting so loud there's no choice

Some say
Each day we draw closer to our time of devaluation. 

I prefer to believe
We are all necessary and provide variation.

Monday, January 13, 2025

The Singularity of A Widow's Walk

What's it really like to "caregive" in your home?                                                         Depends on the family member, family unit, resources, income.

Who comes beside and "gives help"? 

In the United States, you're "expected" to have Health Care.                                       paid for monthly to "offset" the costs of living as you grow older.

In reality, spouses/partners are the ones providing.

Income for many has stopped.                                                                       Expenses climb and build debt hills and then mountains.

My husband spent 100 days in the Hospital.                                                               Almost all of that time in Critical Intensive Care.

He came home to a Hospital Bed Insurance didn't cover.   

For a little over a month, we had biweekly "visits".                                                           A "medical person" who "checked on" my husband.                      

After a couple of weeks I was told visits would be ending.                                               The "training" on wound care draining, removing, replacing was minimal. 

Memories Stick Like Glue -- the bags did not.

One bag became two, then three and finally four.

They filled with liquid quickly.

He could no longer get up and take care of emptying the bags.

I had 24/7 "duties" and no one to help.

Our oldest son, who lived across the country, never came to visit. When I asked for help, he told me I didn't know how to manage and I made his father sick.

On all sides I was torn apart;Doctors kept saying he needed to gain weight. 

They saw the bags, how they multiplied, until he could no longer do Dr visits and all they saw were an occasional report from a Nurse who came less and less frequently.

BE WARNED. YOUR MEDICAL PLAN IS YOUR LIFELINE.                                          What you receive, how you receive it and if it's even given is strictly done based on "how much you can spend" either from savings, insurance or prepaid programs. 

Told constantly: "Your husband needs to gain weight." 

Those were the "Doctor's Orders" and it became the mantra on every visit which quickly ended as our "time" ran out.

"The Doctor" says this can be done or that can be done.                                          We did not realize "the Dr" was using the inclusions of the Medical Insurance; no compassion or concern involved.

I trusted. I listened. I believed. 

They were the "experts".                                                                                                   I trusted their "professional ability".

They knew. They had to see.                                                                                   They'd cut into him.                                                                                                    A lancing that never should have happened.                                                                  The beginning of the end. 

The Widow's Walk is unplanned and unwanted.                                                         It happens every day.                                                                                                       It's a Sisterhood no one wants to join.