Life Times Three: Living With LBD
Three generations shared life together for decades in one household. Daughter and granddaughter set aside their lives to care give for two family members at home. Life challenges of undiagnosed advancing Lewy Body Dementia and medical challenges of MRSA tore apart the family unit. Writing, reflecting and researching then and now to shine light into holes in our society's safety nets for the aging, care givers and families.
Monday, June 30, 2025
Knowledge Is Power
Sunday, June 29, 2025
AGEISM Begins at Twenty -- Part 1
On one shelftop was a book
It's not a quick read and some areas
DEMENTIA.
SHIFTED "ISM"
Today, with repercussions from
Thief In The Night
LBD, once thought to be a “rare" Dementia
NOW a major challenger to Alzheimer's as a Most Prominent type of Dementia.
My oldest son
still doesn't believe
his Grandmother
had Dementia.
He could not then,
and cannot now,
grasp this disease's
variations, length of time
and scope of impact
on the individual & caregivers
My youngest son took
almost two years
to recognize
his Grandmother
had significant
mental processing
problems.
Daughter lived with us
the longest.
Went to College locally.
She understands:
LBD is A Thief In The Night
Lived through many
painful episodes
trying to convince
"the boys" with limited amount
of material available.
One of the principal
components of LBD is the presence of
hallucinations/delusions and ability to be "influenced".
Mom had "visions" of people
outside our house in early 2010.
People dressed in clothing
more early twentieth century
and small town styles.
We wrote if off to
a book she was reading,
A memory she recalled,
It's a sign of Dementia.
We thought it was
her eyesight.
Cataracts &
macular degeneration.
That was before we knew
about LBD.
Mom's nose ran constantly.
Sounds silly but this is
a "warning sign" for LBD.
We also wrote it off
to medications received.
For a urinary tract infection.
Mom passed in her 100th year
Two years in a "facility"
Not our choice --
Predator's
Some abuse for money
Others have an agenda.
They're not all
impoverished
Ours was privileged
We thought she was kind
She was manipulative.
She was vengeful.
She walked on Sundays
In the procession
Carrying the Bible
Preaching, teaching,
Predator in sheep's clothing.
Beware those who self invite
Their agenda is to "stir the pot"
To get close, to blend in
Like any great hunter for prey.
They manipulate, control
Walk away with money
And even the family home.
We felt something
didn't seem "right".
Especially when my only
credit card was
cancelled suddenly.
Then called by a local
Long Term Care
Asking when to
expect My Mom.
This woman
had been a Nurse.
She knew how to
"work the system".
Abusers come
in all shapes and sizes
Man or woman,
Young or old.
Rich or poor,
For some it's a game.
For others, control.
They are thieves,
With no respect.
Predators who
Seek "The Hunt"
They're bold
They have no shame
Ruining lives is their game.
Saturday, June 28, 2025
Chasing My "Self"
What’s with this surging need? I sit and type and wonder why. The words come flying out of “the sky”.
Have they been hiding all along
If so, I’ll use them as “My Song”.
Am I poised to live and learn
Will I continue to actively earn?
So many questions,
far less time
Will I burn or will I shine?
Does it matter any way
If I choose to have my say?
Like bursts of light
Words join as if in flight.
Like Geese in the air
They join and create
Winter is harsh
It hides their food
They know they, too,
Have a lot to lose.
.
We humans see
We’re not fools.
Each finds their special tools
To survive and to wait,
Knowing there IS
an expiration date.
While we can, we do;
When we can’t, we won’t.
Today I have the choice
Today I raise my voice.
A wrinkle here,
A slower step there.
Be careful, Mom, I’m told
A loving hand extends to hold.
Perfectly capable --
Yet "she" has some "fear".
She watched her Grandmother
And shed many tears.
Megaphones screech
Across the electronic page
Telling me I’m worthless
Just because of “age”
Then why, tell me please,
Do YOU want to incur
More candles each year
If you see "in me"
What you most fear?
You can’t wait to age
You see it as a “perk”
Let me tell you, my “friend”
That’s acting like a “jerk”
Value what you have
Embrace where you are
Soon you’ll hear the shouts
Causing you to doubt.
Others have been born
They demand a place.
Wanting to take yours
It’s going to be your fate.
It’s a life story,
Filled with doubt and worry.
Stand up, speak out
It’s never too late.
Spread love abundantly
Let others build lives with hate.
Strange how survival
is seen as distress
It causes concerns
and such a mess!
We’re blamed for the actions
The deeds and the plans
All to build fortunes
From what we achieved
And refuse to “concede”.
Life seemed to drag
Then it flew by fast
It’s Memories moving forward
Relclaimed from my past.
“I’m fine, thanks for asking
Sleeping well, eating right”.
You know you’re quickly aging
When many health questions
come to light.
Of course my end
is closer in sight. . .
How fortunate I am
to know it’s not tonight.
Wednesday, June 25, 2025
Changing Directions
Saturday, June 21, 2025
Look Before You Leap
How many college visits
Thursday, June 19, 2025
Hidden In Plain Sight
Not being able to attend School functions. Missing the date of an Anniversary. Business cross country or worldwide.
Life happens, we often call it "controls". They're choices made yesterday or years ago. We believed they were "for the best".
Look for the patina of unexpected times. Value what exists, remains, is shown.
it's not choice driving the person. It's often misconnected memories.
Our mind stores years. Life experiences, actions mixed together.
Once unique, separated. Now pressed together or torn apart.
The mind "confused" by Dementia, may not have the ability to "sort through" or "find" acceptable words or actions.
Remind yourself: this is someone you love.
They are there, standing, sitting, laying in a bed.
Time spent today are memories tomorrow. Keep yours wrapped in love.
Dementia is a thief in the night. It's often hidden in plain sight.
Tuesday, June 17, 2025
Family Ties Fall Apart
I'm aging. We all are. What exactly does that mean?
More time added to "Yesterday". More time subtracted from "Tomorrow"?
We run life's race believing we'll win. We trip, we fall, we rise again.
Children become parents. Reality sinks in.
They take, we give, repeated every day. We reach out, they sidestep. Life is play and then they go away.
Our paths separate. Some come back together. Others split and divide.
Living close, moving far? What are the ties that bind? Who among you really care?
Years and decades pass. Aging, changes, wants and needs.
We all are mirror images. Reflections of who we are and have been.
I feel almost invisible at times. Grateful to have one who cares.
Friday, June 13, 2025
Hidden In Plain Sight
Dementia challenges everyone.
If they're living in a special environment, you carry the concern when circumstances block your visiting.
It's often like an emotional ferris wheel, one day they're up, the next they're down, never knowing how far in either direction.
Today, not tomorrow, if you have a loved one, create a Power of Attorney for Health Care.
To be their effective eyes and ears, you need paperwork.
I've heard horror stories about "discord" in families and spouses being told they had no "rights" if they didn't have a POA.
We learned the hard way, caring for a loved one who lives with you is easier than in other environments.
Dementia is not "one size fits all".
Sometimes it's medications; don't label everything"Dementia".
One friend has a husband who wants to talk and be heard -- sometimes for hours on end.
She has activities, interests; works full time, community involved.
He wants/needs her to always be available to give him constant attention.
It's not always about finances, it's a need to be there "on demand".
For many women it's like having an infant, toddler, young child, needing "your" attention.
In these times: Remember the past filled with absences.
Wednesday, June 4, 2025
Different Directions
Arms and hands. Legs and feet.
MOVE! When I ask you. . .
MOVE! When I need.
Where am I going?
Where have I been?
Why do I want to?
When I’m not sure I can.
You look into my life
You measure and judge.
Clock's ticking
Your time is dripping.
Like a leaking faucet
No one cares to fix.
Vices and Virtues
All come to light.
When we sit in the dark
We fail to ignite.
Generations so different
Yet so very much alike.
"He" drank alcohol.
"She" took pills.
Chained to the office
Sent far and wide.
You never saw your work
As passed to a machine.
Believing you would beat the odds
You would survive the "freeze".
My Gen opened a bottle,
Yours prefers needles and pins.
Work it out, work it off
Always “yours” to measure out.
You push and shove to climb and gain.
Then turn around to face personal shame.
Loss of time, feeling pain.
Let Me Be!
She's coping when you’re not near.
She lives with constant concern.
Sometimes with fear.
Not necessarily about the end;
About the journey round the bend.
Come and Go.
Sit and Stay.
Tomorrow’s questionable.
There’s just today.
Yes, I know, you don’t approve
Who’s life is it, if I may be so “crude”?
I’m nearing the end and you want me to say
It’s just another one of those gone again days?
You can't cope, so I must leave.
It's too much for you, not so for me.
The Home I've known,
My special place.
Now I'm told "I'm taking up space"
Others "need" what I achieved.
It's their turn now
It's my time to leave.
I’ll know when it’s time; It’s easy to find
It’s all in my body – and in my mind.
Isn’t it what you want?
Isn’t it what you need?
You stumble and stare
You walk away, do you really care?
HEAR “ME”. SEE “ME”
I am here. Have been. Will be.
WILL YOU . . . for me?