Beginning of The End

In these words, I find the strength needed to share

Knowing you, who read, have a reason.                                                                         Need unfilled, often critical in timing and purpose.

A journey concerned, caring and confused, maybe alone.                               Medical error; no one admits

A few come to visit, some express concern.                                                                 Advice is their "contribution". Misinformation abounds.

Time and funds limited.                                                                                               Sons married living hundreds of miles away.                                                               Daughter trying to stay in college.

No cell phones or computers that could send pictures.                                 Believing each day would bring healing, life would change.

Lied to by the Hospital and the Doctors.                                                                     "All he has to do is gain a little more weight."

They knew what was happening to my husband.                                               They changed his dressing on the incision.

Record keeping often typed.                                                                                       Easy to "adjust" to "cover errors & omissions

The Dr writing them made the error.                                                                       Never set a foot near my husband on that fateful night.                                       Gave the direction on the phone to "lance" .

Infection or inability or both created a deep incision

HE was a SHE in the ER; short staffed, definitely.

SHE was unable to help my husband

         took out a phone and made a call

         followed orders given uncertain of how to proceed

        did as she was told

HE  was not in the ER

       was somewhere he didn't want to leave

       did not ask the right questions

       caused the beginning of the end

       did not appear all the time we were in the ER

       wrote the report, signed it stating HE did the cutting.

Sight unseen, she followed his direction              

He never saw the patient

He never ensured a Dr made the incision

How harmful his "advice" would prove to be

His failure to ensure competency led to my husband's death

It was 2009, personal computers were rare but hospitals had systems. 

No Dr attending. 

"She" made a call. 

Received directions to"lance" 

She did exactly as she was told.

Beginning of the end.

LBD Social Signs

"Hindsight is better than foresight" is never more true than for caregiver's, family, friends of loved ones with Dementia.

Current studies cite the appearance of specific behaviours as being the "keys" to diagnosing Dementia.

Many forms cannot be specifically cited or identified until there's a post mortem examination of the brain.

It doesn't matter if someone has Alzheimer's, Lewy Body, Frontal Temporal or others, they have Dementia.

We need to recognize Dementia as the next big life challenge.

It's fatal, physically and emotionally draining.

It's destructive and stops life as we know it,

General articles and reports often become focused on the decline of mental processing citing bodily functions including standing, walking, incontinence as type or stage of the disease.

Are these really effective measures of Dementia's progression? 

Are we simply focusing on those areas we consider "more important" and use to determine the "level" of the progression and level of caregiving?

When are we going to recognize Dementia, especially Lewy Body Dementia, doesn't appear like Cancer often does with a lump you can feel or Heart Disease with a stroke? 

Lewy Body Dementia often masquarades.  As I wrote in the blog entry: Masks: Ever Changing Faces of Lewy Body Dementia , LBD is not always visible. 

People with LBD, in the beginning stages, seem to be capable of adjusting their minds, are "socially conscious", even far into progression of the disease.

They may laugh about "what they've just said", mix and match information that seems to go together to the "untrained" and "unfamiliar with the subject" ear and eye. 

Another observation I've had with Mom is how vacillating Lewy Body Dementia really is; behaviors were so unpredictable. 

It amazed me how caregivers at Mom's facility and especially the floor nurse, an LPN, believed we could affect her behavior or we could change it or Mom could choose to change it.

Unfortunately, these are all false beliefs about a real, medical condition that like Diabetes, Heart Disease or Cancer, cannot be controlled or adjusted through "willpower" or "determination".

The other night at a presentation, the message was conveyed by a gentleman about his wife and how she could somehow, if she just tried, control or affect actions like sitting up in her chair. 

It was HIS wants and needs for her to be who she's always been, not who she was becoming.

After a long period of time and a good day, when for some reason her brain neural pathways had shifted, changed or somehow let a message "slip through", my Mom might make that movement or give that response.

We, too, desperately wanted Mom to be the person we knew, we lived with, to be there, to have the ability to "return" to the person we felt comfortable around and with.

Like a trained animal, we reward the Advanced Dementia patient who shows us they "can" do something, hear something correctly, respond correctly, with a smile, words of encouragement and even with statements like "I knew you could do it if you tried hard enough".  

How grateful I am now realizing that with enough advancement of the Dementia this level of self satisfaction on the part of the visitor, the family member, may not truly register with the person struggling with Dementia.

Then, there is the other belief, and one popular today, about "the right medicine" controlling and eliminating "the disease".

You see, we're far more accepting of something we "catch" changing someone's life than we are when there is a "loss" of what is perceived to be the "self' of the individual which many believe should be able to be "personally controlled".

It may be more like eradicating Cancer. 

Controlled to some degree, possibly, perhaps, but the ability to eradicate may be more challenging or accomplished with some form of discovery that shifts development and progression.

We may find the causes of some Dementias and be able to change behaviors (smoking) or where you live (not close to where chemicals have been dumped) and therefore not get a specific Dementia (Cancer).

Unless someone determines there is one specific cause for Cancer -- possibly a genetic tendency or even lack of certain configurations/compositions -- Dementia, like Cancer, in my opinion, will be with us for many years to come.

Dementia may be seen as being prevalent in the very elderly but each passing day we're discovering, as we grow from an infant to a toddler, through adolescence and into adulthood, the vast frontier of the brain and how it is the center of the individual human universe remains an ongoing challenge.

Just recently, some have started  classifying other brain diseases, Muscular Dystrophy and Parkinson's for example, into the area of Dementias. They affect the brain and that is where Dementia works so the theory is they're related  or even one and the same.

Let's have a movement within society to be as health wary about Dementia as we are about Cancer and heart disease that affect human relationships and lifestyles.

Let's open the discussion, bring into the light, show the world we see, hear and most of all support those who are challenged with and from Dementia including the individuals and their care givers whether family or other.

YOU have the power to facilitate a change. 

Start a conversation. Volunteer to visit LTC's.

YOU hold the future in your hands.

It's your future or at least the future of someone you love.

Line of Descent

Life is life and death is death.                                                                                             Until the time when East meets West.

Extend your arms, reach out your hands,                                                                           Close your eyes & take a stand.

There they are, each one you knew,                                                                             Now gone as others and so will you.   

Parents left, then brothers, too.                                                                                       Sisters lingered as though they knew                                                                         When they walked on, so would you.

A line was formed and except for War                                                                         Each one came "home" to lay beside                                                                                 A wife, a child, in their own space.

You came and went leaving flowers for all,                                                           Knowing the day would come                                                                                     When you answered the call.

We wait for you to come and stay                                                                                   While now you turn and walk away.                                                                                   We too had hopes and plans like you.  

Some were done and some remain                                                                                 Others we took into this grave.                                                                                           It's up to you to carry on.                                                                        

To Move Is To Live

They sit in wheelchairs waiting. Some given privileges of chairs.

Forbidden to walk because they might fall. Too few caregivers.

Sometimes a smile from a passer by. Sometimes a glance of curiosity.

Dogs and cats greeted better than older human beings in facilities.

If life could only be like a story on a streaming service. . .

Where each of us who have abilities and choices change places . . . 

With family members in "Institutions". Would we then see?

Those who did not have or somehow lost the ways and means . . . 

Go through the doors of government subsidized Elder Care

Interesting they use the name "Elder" 

A title in many Communities given out of respect and honor

Are you so sure it's "as promised"? 

Have you really gone behind those "closed doors".

Do you see what you want to see because you need it to be?

I understand. I walked that walk. Everyday I had to work.

So hard to know we could not take Mom home.

She lived with us for over forty years into her 100th year.

We didn't want her "institutionalized".

We were finally able to move her but no money for private care.

Both of us had to work to survive.

We tried another facility and then another and another. 

LTC with government support was worse than kennels for animals.

Tears come to my eyes even today knowing what was done to us by the Church Lady is being done by others in a high tech world.

Predators are all around us as we move towards 2025

I found another attacking one of my Cousins.  

They are a devious group of humans, focused on self gain.

             

Do not go blindly, open your eyes wide.                                                                         When it's your time you'll see far too clearly.                                     

Society won't support you.  Your value is gone.                                 

Values are for what can be achieved and how fast.

Ability and possibility.

A commodity worth only what the market values.

Aging isn't what they tell you it is

When you're young and anxious to grow older.

When you arrive, it's not the destination you thought

No turning back, you can't even run away.

You'll stand up tall, hoping to look strong

Or bend over with the weight.

 

Looking into a darkness

Seeking to find the light

Making do, moving on, waiting for someone, anyone

And you, young one, see this as best for ME.

You who complain on ships about the food 

Waiting too long for anything, not enough space

Change places with me and see for yourself

Closed doors change points of view

Signed in, locked up, waiting for the light

A few privileged have it better, or so I'm told

I travel to meetings, conventions and find

What's practiced that's humane is few and far between

I will keep looking and writing seeing words are the way

To ensure those growing older will see better days.

Stop Pushing Me!

Close the door and the windows, please.                                                                       I’m tired of insects who buzz around                                                                            Looking for somewhere to feed.

Do, Watch, Contribute More.

If you don’t, you’ll close The Door.

Everyone’s waiting just for you

They can’t go another day

Without knowing ‘What’s New”

The pressure is strong

The days not so long

I juggle and leap

Getting very little sleep

 

If, When, How, Why

Everyone reaching for the Blue Sky

 

The Door That Will Open

Time that never stops

Life forever changed

When You’re “On The Top”

 

Remember those dolls?

I see at a glance

Their arms pulled to stretch

As we make them dance

 

Who’s pulling your strings

Who’s igniting your fire

What twists and turns 

Until you feel your life burn

The Treadmill 

Becomes a racetrack

We construct and design

Always seeing faster

Is at the head of the line

 

One at a time

Place a foot on the side

Deep breath, look around

Hear that familiar sound?

 

The person you want to be

Stands tall in your shoes

Run too fast

You’ll usually lose.

 

Slow down, sit and stay

Look around, take time to play.

Your inner child needs to rest

You’ve passed Life’s Greatest Test.

It's your race, not theirs

To walk or to run

To stand or to sit

In shadow or Sun.

When you measure you miss

The subtleness

Of This. . . 

Today followed yesterday

Tomorrow will too

It's your life you're living

You choose while you're giving.

Broken Family

Unification is all the rage

As we take our place on the center stage.

Looking around I fail to see

How everyone seems to be looking at me.

I have no control over what they do

Yet I feel the eyes and the shame they view.

When "Father Knows Best" is front and center

We "children of divorce" were unwelcome "Lepers".

With so much focus on family today

Those without almost always turn their face.

It's a lonely journey with a slow motion pace.

All of it seeming to face disgust and disgrace.

Not worthy of being called friend for so many

Plagued by a future pushing in so many ways

Life would be challenging each and every day.

Look in the mirror and see what you see.

Their measurements do not matter

Just be who you'll be.

Years pass, their time limited as yours.

You realized early the twists and the turns.

Life is a line you walk and you run

Often in shadow and sometimes in Sun.

It's your life to lead or follow 

You set the pace, do not form any disgrace

Look back and now ahead

See the life you've actually led.

Be proud of what you've done, where you've been

They don't control you now, they didn't control you then

See life as it was when you took the lead

Knowing you chose just how to proceed.

Turn away from the memories they no longer rule

While life is an education, it's no longer your school.

Gaining Peace of Mind

This Blog has travelled to many parts of the world.

Many speak different languages but all with a "common interest" -- CareGiving For A Loved One.

I've varied  writings about the time spent with Mom, the challenges of her unrecognized Dementia, the problems we encountered and were unable to resolve.

Knowing the challenge of unrecognized Dementia, of verbal abuse and manipulative control of the weakest among us who often were some of the most strong -- 

Taking advantage, getting "high" on manipulation and control of the weakest, wrecking havoc through  tearing families apart.

Julia appeared to "have it all" -- a beautiful home, active in the Community and in Church, volunteering to bring to those least able to attend an offering, a Communion, seeming to care when actually looking for their weaknesses to prey upon.

Learning shared brings peace of mind.

Reaching out I hope others will share their experiences.