Learning To Play Again

The stage is set.                                                                                                             The whistle blows.

Our Life Song starts.                                                                                                       We pull on many hearts

Isn't he/she adorable?                                                                                                      The face, the hands, the feet.

Amazing, so perfect.                                                                                                       So sweet and so kind.                       

From birth to death                                                                                                           We face one direction 

Forward, March!                                                                                            Backward, Free!

There are several

“major markers”.

Milestones dependent on 

Origin, History and Practices.

We learn we have hands & feet; 

they’re our first “toys”.

Into our mouths,

using our “senses” to discover.

This activity is tolerated, 

When we have limited mobility.

Once we move around, 

We reach outside ourselves 

Food moves from liquid to solid;

into our mouths, out the other end.

We now have the task 

to secure what didn’t last.

 

Like a rubberband 

we stretch to reach.

Discover we have 

sharp and useful teeth

All the time we pass 

Using  hands and feet.

Until we’re shown another way.

To fill our nights, 

To spend our days.

Life becomes 

our work through play.

Quickly changing, 

our minds begin to stray.

Some embrace, 

others avoid.

It rises and falls 

just like the tides.

 

Ideas, goals, 

plans are made.

Some use a hammer, 

others a spade.

Learning and working, 

Finding and using.

Our tools 

always sharpened.

Always asking, 

“Whatcha Doin?”

Then comes the day

You’re given the task

To lead, not to follow

You just had to ask.

Then you regret 

the decision you made.

To walk in the Sun, 

not stay in the Shade.

To be noticed requires effort 

consistent and long.

No time to spend writing 

or singing "Your Song".

You look behind,

you see the Past,

Hungering for another 

that will last.

One to a customer, 

childhood, that is.

You had your chance,

Let “The Games” Begin.

Pockets To Pick

Where  to begin?

Each time I touch                                                                          

or see something.

A part of husband 

or mother's life.

                                                  

I'm reminded of 

criticisms by family 

and others.

Sons lived 8 hours 

drive away.

One Son 

came to visit.

 

The other 

couldn't find the time.

Critical family members 

and a Church member                                    

as a caregiver for Mom 

and for my husband.

Only one of these 

came into the house.

                                                                      

Only one provided 

any type of "assistance".

40 hours over 11 months.                                                                                               often with several weeks in between.   

I'm being very generous 

calling it "assistance".                                        

What she did was find ways 

to disrupt and destroy                                            

my Mom 

and her relationship with me.

I've had many conversations                                                                                           with women who have been caregivers,                                     

for immediate family members,                                                                                         husbands, other relatives and friends.                                              

                        

Almost all tell stories of abuse suffered                                                                         from other family members and friends                                                                       who found fault and criticized.

"Critics" seldom finding time

to visit, relieve direct caregivers.

My oldest son came to visit once                                                                               during the time his father was critically ill.                                                      

Our telephone conversations were few.                                                    

He was always finding fault.

He always told me how "incompetent"

Incapable I was.

I turned to him one time.

I begged for help.

For his Father.

He said "No".

                                                                              

People are reflections 

of the lives they're living                         

especially when they 

find fault with others and criticize.

After my husband, 

his father's death,                                                           

oldest son's criticism escalated. 

He felt "he" was now 

"the head" of "the family".

He wasn't raised to be a "chauvinist".                                                                               He certainly knows how to be one.                                                                                   Where and from whom and why?

Or is it he was "lowered" over years

To be someone without authority

There to provide, to accept

Every time I tried to trust him,                                                                                         he turned around and found a way                                                                                   to cause me harm mentally & emotionally.                                                

He'd physically lost control one time,                                                                               hit me so hard he broke teeth 

and then said I deserved it.

Knocked his father down,

Running away.

He removed our ability, 

his father, mine,                                                        

his grandmother and sister's,                                                                                                   to see or talk with "his" children.

Children grow,

someday they'll know.

They'll see the light

The darkness their parents created.

Once before they married, we visited, 

She led us on a "tour" of the house

We had no idea they lived together

This was decades 

And a decade before

"Trial Marriages"

"Cohabitation"

Became commonplace.

Taken on a walking tour

Stopping outside a bedroom

Thankful my Mom 

Could not take the stairs

Shocked by what we saw

Husband, self, 

Our 10 year old daughter

Before handheld phone/cameras

A display of several bras & panties

We were "greeted" by 

her underpants and bras

"displayed" on a bed 

in a room they shared.

It was before the turn of this Century.

"Shacking Up" was not the Norm.

Showing contempt for someone's parents

Was the depth of being crude.

She didn't care. She felt "entitled".

Showed how much when they married.

Demanding we turn over cash to "them"

So they could go to Europe.

It was and continued to be "her way"

Money we'd saved, 

despite previous experiences,

For a traditional "dinner together"

Both families sharing a special time together.

Her "out of control" 

demands and commands

left us with no choice. 

We skipped the Wedding.

We weren't "honored guests" 

we were simply

Pockets to Pick.

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. 

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.

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.

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.             

Spoiler In The Deck

Parents are  given one chance, 

one lifetime, to do "our job". 

Raising those helpless, 

amazing infants 

who arrive in our lives.

Over whom we have 

little to less control 

as the years pass.

I really thought, 

given the same parents, 

lifestyle, advantages,

the "mold" would shape 

each offspring similarly.

People are individuals. 

What they experience, 

how they interpret life, 

decisions they make -- 

are variables.

We tried to "equalize" 

to ensure no child was 

"left behind".

One always pushed the 

"envelope of life"

Believing they were 

Always in control.

There were no "perks" 

for one over another.

Each was encouraged 

in their unique or similar 

interests and abilities.

Then they were "grown"; 

developed with support

into the ongoing 

process of each life step.

But how, some parents ask, 

can one be so "different" 

towards them from the"others". 

How can they twist truth 

about daily life -- 

as "they" experienced it?

Enter other influencers. 

Especially those 

with ability & capacity 

in bed and out.

 

A lifelong "soul mate"

with non-removable straps.

A manipulator

Never changes

It adapts, adopts,

Survives using deceit.

I'm happy, they say.

I love being used.

It helps me provide.

What I'm told to do.

Animals know their own smell

They bury it well.

Then covers what it produces

As the smell repels.

The closer you are 

The less you want to know.

Not wanting to be caught

In the growing web of 

Manipulation & Control.