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.             

Found! Other LBD Writers

Time Travel Entry 

written Aril 29, 2013

Deep in the time 

of living with LBD

I wrote 

to try to understand

To continue 

going forward.

It's like finding a map 

or at least 

a table of contents 

to a complex textbook.

Have been talking 

with my daughter, 

sharing the 

many changes 

I've noticed 

in My Mom's/Grandma's 

abilities to communicate.

 

Words substituted 

with no relationship.

 

Loss of ability 

to find words,

make or write

complete sentences.

 

Moving from one idea 

to another 

as though 

they tie together 

but with no bearing 

on one another.

Talking, talking, talking. 

Laughing &  laughing,

or angry, angry, angry.

Never quite sure 

which emotion 

will surface 

or present itself.

Finding others in

the LBD community --

their writings help.

I believe 

there's a commonality

From man to woman, 

From State to State,

From Country to Country.

For us it's

complicated 

by visits from JH, 

the woman who 

befriended Mom. 

She works 

to cause

more confusion 

and to try 

to get Mom 

to do things 

and say things 

that will cause 

friction between us 

& problems for Mom.

Reading, reading reading.

  

No one. 

Not a single person 

mentions the complex 

and ever changing 

"soap opera" 

of the delusions,

halucinations 

their loved ones relate.

There are strange things:

seeing a zebra on the lawn, 

mistaking a spouse (female) 

for a secretary of many years, 

remembering her as pregnant 

(a laugh the spouse said 

she'd been dieting 

& lost thirty pounds).

Perhaps someone visiting 

mentioned the weight loss 

and the LBD husband 

rearranged the information 

recollecting weight loss 

after pregnancy.

This stimulated 

recalling the memory 

of the pregnant secretary -- 

mixing all together.

We found Mom's delusions 

have some source

in a "real world" experience.

The loss of accurate language

can make LBD people 

unable to communicate 

a simple thought accurately.

LBD is like a mixer 

with random ingredients 

added in and never knowing 

what the end results will be.

 

There are mental "drains" 

where some fall through. 

Other parts 

never get mixed in, 

some stay in large clumps,

others fall away.

This disease, 

if you aren't suffering 

from it as the person 

or the caregiver, 

can be fascinating. 

It can also 

be frightening

when you witness 

the temperment

of the person 

go from friendly

to furious 

and back again 

in what can be 

split seconds.

Why aren't we 

associating 

other 

"mental illnesses" 

with LBD 

and using research 

in those areas -- 

like schizoprehenia 

or brain damage? 

Linking together 

these areas of study 

might provide clues 

to discovering 

cures & ways to manage.

Talk about Dementia.

Read about LBD. 

Spread the word.

Work towards a better future 

for our aging population:

Volunteer at a Senior Center.

Advocate with State Legislatures.

Follow writers who dig deep.

Looking to share. 

Showing they care.

When Will They Ever Learn?

In America, parents "Push".                                                                                               Kids "Pull" life like it's Taffy.                                                                                               

Both believing their "Recipe" is best.                                                           Focusing on leaving "The Nest".

The more distance, even in AI times,                                                                               The more possibilities for personal harm.

Even when you're close and share,                                                                             There are secrets placed here and there.

We're taught self sufficiency.                                                                                           To know how to survive many inequities.

The human heart, though, wants to believe                                                                     That man or woman would NEVER deceive.

Flying far from the nest                                                                                                     They believe they'll rise from the rest.

Life builds, life breaks.                                                                                                  Life gives, life takes. 

So set on the journey.                                                                                               No ties bind so tight.

They believe they rise faster                                                                                           When "you" are not in sight.                      

Once takers, now makers,                                                                                             Soon creators becoming fakers.

They learn to expound                                                                                                     on what they do "right".                                                                 

Overlooking the vast extent                                                                                             of dark, unfriendly night.

Parents are set aside.                                                                                                         Influencers become their guide.

The "Pot of Gold" just out of sight                                                             Focus away from "the light".

Like Carnival Barkers of ages past.                                                                               They tempt and cajole until the very last.                                                                                                                                                         

Retrofiting, Retraining, Replacing

Fingers placed, keyboard spaced.                                                                                Humans needed, easily replaced.

Family and friends redefined.                                                                                             New relationships formed and signed.

We encourage "play".                                                                                                       "Trained" along the way.

Fulfill your wants.                                                                                                             Your needs can wait.

Sounds of praise                                                                                                                 Cradle to grave.  

We accept, we believe.                                                                                                       An unknown "expert" often deceives.

We're told to accept,                                                                                                           To believe what we're told.                                                                                             Especially applied to those getting Old.

Youth is worshiped. Age is FUN.                                                                                   We shortly bask in the Rising Sun.

The Pot of Gold, Rainbow and all,                                                                                   We feel so big and look so small.

We watch a loved one disappear                                                                             Seeing a stranger we sometimes fear

The person we love comes and goes.                                                            Where and when we never know.  

Family Ties Undone

Learn from my wanting, 

needing to trust.

A wolf in sheep's clothing

Can tear life apart. 

We lived together 

as a MultiGen Family 

for almost forty years.

Husband would pass 

January 2011.

Mom would pass January 2014

The year of her 100th Birthday.

I felt so lost.

Home from 100 days in Hospital 

Our Family Room became 

my husband's  bedroom.

A Visiting Nurse came twice.

Then it was up to me.

it's all about "deep pockets"

In our land of the brave

Home of the Free.

At first he could walk a little.

Soon he would be bedridden.

No Medical Insurance.

To cover major care.

Social Security?

Medicare?

Minimal coverage.

Savings, Assets?

One hundred hospital days

Reduces your assets and capabilities.

We'd had a small business.

Paid our own Insurance.

Think twice before you leave

That "cushy job" with benefits.

In today's world "perks"

Are astronomically priced.

Today's young believe

Life will provide.

They see dollar signs

Believing they'll be "rich".

The smart ones rise.

The hard workers sink.

It's not what you do

It's what you "think".

We tried. 

We rose. 

We survived.

Then we learned.

Those benefits

Are what working's

All about.

Self service is great

Self employment has holes.