Sunday, September 28, 2025

Watching, Waiting, Coping

Dementia is a process.                                                                                                     It seems to move around the body.

Not realizing this was happening.                                                                                     Our focus was on one day after another.

The diminishing ability                                                                                               and the frequent loss                                                                                                     of bladder and bowel function                                                                                     has been more and more prevalent.                                                            

We did not know and were not told                                                                                     the body often starts "shutting down"                                                                               and full loss of control can be a "sign"                                                                                 of other physical changes internally.                                                          

We've noticed some patterns 
and try to watch for causes
and/or related developments
all without any support from the LTC.

LBD Dementia 
raises the level of risk taking 
we tolerate or allow in our loved ones 
to try to give them as much 
"personal freedom" as possible. 

With a child, 
there are so many "firsts" 
and so many "what if's". 

Like holding a child's hand 
when crossing a street, 
eventually turning loose, 
believing they'll be cautious 
or turning over the car keys 
for the first time. 

With the adult "child" 
going through Dementia 
we don't look forward, welcome,
or anticipate these changes. 

We're on a backward, 
not a forward journey.

We travel on a roller coaster. 
Speeds and distance vary, 
no stops along the way.
Only continuing daily
into a future of uncertainty.

Some days, 
even some hours, 
change and fluctuating abilities
cause sheer exhaustion 
on the part of the care provider. 


Wednesday, September 24, 2025

Signs of Advancing Dementia

Part 1 of 3 .
Originally posted April 8, 2013.
Mom would pass January 2014.
More than a decade has passed. 
I miss her. I miss my husband.

These are the steps in life 
we do not choose to take
.
They are the times that challenge
 even the strongest.

Lewy Body Dementia 
has been trying to destroy our family.

It's making great progress 
with the help of people who chose 
not to see or accept the reality 
of this destructive and devastating 
terminal disease.

Fast forward 
with a few steps backward. 
Spent four hours with Mom 
from five to nine last night.

Had a phone call around 1 PM
it was a Sunday, 
alerting me Mom 
had fallen in her shared bathroom 
at the Skilled Nursing Center (SNC).

Was working, 
couldn't get to her right away.
Made sure she was not injured.

Held my breath 
wondering what I might find 
when I arrived.

Falls are common with LBD
as the body motor functions 
& mental functions 
do not always work together.

Her feet "stick to the floor" 
is how she describes it.
(Mom blames it on 
her "new" shoes; 
slippers she's worn 
for many months).

Her arms do not support 
the shift in weight 
from wheelchair to commode 
(she will not ring for help; 
they take too long; 
they're too critical).

The reality is the brain's messages
 do not always reach 
their intended functioning part 
while the brain believes they have 
and so an "accident" happens.
 
The internal organs
generally move to some degree 
but not with the support or ability 
the body should have
to "pass along" not just "eliminate".

There are many reasons for her refusal
including the most obvious: 
Mom wants to retain control 
of the basic parts of her life -- 
toileting is one of the most basic. 

Part 2 Will Be Posted 
Saturday, Sept 27, 2024
at Midnight, CST, USA.

Friday, September 19, 2025

Ties That Bind

Written and saved, January 2011
Shared for a very short time.
Pulled, closed, too soon.

Years have passed.
Feelings remain.
Someone reading
will understand
how time cannot erase
. . . the ties that bind.

Those first few years 
my husband's death 
was like walking
in a fog.

I remember 
the first year 
without my husband.
 
How did I move 
through that time, 
those days 
after the early morning 
of his passing? 

Back then
I couldn't write
about those times. 

Now I find words 
come to the surface 
wanting to be seen and heard. 

I still get a lump in my throat,
tears that form deep inside. 
I've not found it easy 
to cry since we parted. 

For me, 
it's taken 
going through 
the total change.
 
It's what happens 
when the cycle of 
your living/dying experience 
has moved past a point
each individual life marks. 

For me, 
it was his death, 
Mom's death,
and the death 
of our long time 
family pet, our cat. 

Mom always said,
the "good" and the "bad"
often come in threes.
She had many interesting
ideas from her culture.

Time of beginning, 
different perspectives, 
moving into 
another phase of life -- 
a change 
as significant 
as night into day.

When my husband passed, 
I went through a few of his things 
while our sons & families 
were in town for the funeral.

Ties. 
Easily shared. 
Value is perceived.
Memories of providing for family.
Enjoying celebrations through decades.
 
They were a part of who he was.
I enjoyed finding them for him.
Proud he chose to wear them
Loving him even more.

Brought enough 
for each Son to choose a few.
Never thinking they'd try to
split all between them.

Guess neither thought
their Sister would cherish.

Caught in the web
of loss this was a small "gain".

Thankfully one held back
taking all or she and I would
have none to touch.

Remembering, 
recalling,
our amazing life
shared 
with family & friends.

Now pictures, papers
Cards and memories.
Made to enjoy and recall.
Focusing on our lives together.

Be grateful. 
Cherish the moments.
Recognize the end
comes too soon.

Measure not by time.
Hold close the moments.
When they pass 
Only the memories remain.

Thursday, September 11, 2025

Parents Do The Best We Can

Darkness falls
When light fails

So far in
No longer a sin?

Rampant today
Fixed, not remedy.

What do you do when
your son or daughter 
"turns" on you? 

They mis-remember 
or choose to "twist" truth?

Rewriting their lives 
and those of other 
family members.
 
To conform to what 
they believe "now".

You honor their request 
even when it hurts.

When the mandate is 
"NO CONTACT"
The choice is not yours.

Five years and counting. 
A new grandchild arrives; 
no announcement; no contact.

Wait! Intercession. 
Wife of other son 
asks "them" 
to come to her home 
while you're visiting. 

It's a long trip, 
you're only able to make it 
once a year. 

Concerned about meeting 
the youngest 
who was born after 
the "dictate" of their father 
regarding "no contact".

Concerned about 
the younger two 
and the older two -- 
they've been "raised"
with prejudice and with lies.

Allmost speechless 
when the time arrives.

They walk through the door, 
Mother puts them in a line

She makes sure they move along
A quick hug and it's "Next!" in line.
 
Mother parades them through
Quickly moving one after another.   
                 

The day will come. They'll see the light.

Darkness can envelope
Moving away as children develop.

You're just holding on,
Holding back years of tears.

Recalling abuse,
Mental, emotional & physical.
 
Concerned about 
being "watched", "
measured" 
and "evaluated" 
not just by "him", 
also by "her".

All you can say 
to each grandchild is 
"Any time", "Any time".

You wanted to talk 
with each one
but fear if you do 
they'll be removed.

You hold back tears, 
joy and sorrow, 
simply say "Any time" 
Some day will be tomorrow.
 
Whenever they're able, 
they can connect with you.
Once they leave, on their own.

You understand. 
None are "of an age" 
when they're not dependent 
on their parents. 

They don't understand 
this isn't the first time 
their father and mother
"removed" connectivity.

Always screaming how
"He" and "She" were abused
when he was the abuser
to three adult family members
and a very young sister.

It isn't me. 
It wasn't his father 
or his grandmother 
or his sister. 

We were his
"family of the past".

A high price to pay.
He'll see clearly some day.

He has a "master" to serve.
One who never will swerve.

He doesn't NEED OR WANT 
connectivity.....with reality....
with reminders...with truth. 

And so he strikes out  
with the only weapon 
he believes 
will do the most harm, 
be the most hurtful, 
as others don't seem to work.

Negating everything I've ever done.
Verbally abusing each and everyone.
Except of course for where 
Real responsibility sits in a chair.

When you learn of this 
"plan" for "re-meeting", 
you feel sick to your stomach 
worrying about how it will affect 
"the children" 
after so long a time 
without "talking with" 
their Nana and their Aunt.

How does your son
who mandated and enforced
this "no contact" ruling 
from his position of power
to control the minor children 
approach this meeting?

No way to know. 
Only to experience. 
To see how he and his wife 
"handle" the "meeting".

The hardest challenge 
was the "first" meeting 
of the youngest, 
now almost five, 
being told by his mother, 
"I want you to meet someone. 
This is your Grandmother."

What did his little mind think; 
how will he remember this meeting...
will he remember...
it's been many months 
and, of course, no other contact.

What brought on this "separation".... 
it started a few months after 
my husband, son's father's death.

I failed to exactly know
how many people would attend
A luncheon to honor
My husband, his Dad.

The other times it was striking out 
at all the adults in the household: 
his father, myself and his grandmother.

The son, of course, points a finger
only at me now 
because I'm the only 
one still living of the three adults.

Writing about these family challenges 
is draining and brings up more 
than I can cope with in one sharing session.

It's a dark story. 
It's a sad tale of how a family 
that was so close for so long, 
started and continues a journey 
where deception, 
abuse & control are prominent.

There's so much I don't understand
How people can put on a "face" 
to the world while being 
so very different in who they are 
and how they treat others.

Enough for now. 

I will not bow down 
To evil in any form.

I will take my life's journey 
where it should go 
rather than where 
it's been directed 
by other forces.