Life Is A Process

Originally started September 7, 2013.                                                                             Mom was still very much with us. 

For a period of time 

Mom could speak 

on the room phone.

Watching and listening, 

hearing and noticing 

lessening skillsets.

 

She was progressing 

in deterioration. 

She'd often pick up the phone 

not knowing which end to

speak into, which end for her ear. 

Mom was still good at "covering up" 

and had the ability to laugh at herself.

 

She sometimes realized the phone 

was wrong side up for listening/speaking. 

The Dementia progressed to where

she no longer had this recognition.

Mom never ceased to amaze me. 

I'd spend time with her, 

notice what I felt were changes, 

think they're now a fixed behavior.

 

On another visit, 

not necessarily the next, 

that change would not be evident.

This was one of the "masks" 

I've talked about with Lewy Body Dementia; 

off and on, sometimes fixed sometimes loose, 

never knowing who was really there.

Mom seemed to stare a lot more than she used to. 
Yes, she had sight challenges and hallucinations

 made that condition even more challenging. 

Or, could medications Mom was receiving

produce these "side effects"?

She fixed her gaze more often,

seemed to be staring off into space,

without appearing to be thinking or focusing.

Trance like. Dementia or medications?

We've all "drifted off" from time to time 

on a thought or concern. 

This is how Lewy Body Dementia can affect 

in later stages and so we assigned this for years 

to LBD when maybe we were wrong, 

it could have been the "Meds".

We made many "missteps". Daughter and I.

We tried to remedy as we moved towards the unknown.

Not understanding aging and what it holds.

Mom remembered certain actions needed to be taken.

While in the process of doing the action,

she'd reverse her actions and undo what she'd done. 

She usually remembered she's supposed to lock 

her wheelchair before attempting to transfer to her chair.

She'll lock the brakes, move her hands and then believes 

she's not locked them and unlocks them. 

Hindsight is always so much clearer. 

Advancements in the short time since I started writing, 

in the field of Neurology & Lewy Body Dementia,

have moved light years ahead. 

Today . . .  I've somehow gathered the courage

 to "go public" with our challenges and share 

the problems and possibilities we uncovered.

I look even farther forward to the additional ways

I can add to more individual walks along the paths 

we maneuvered so precariously.

Mom loved to read and she was a life long learner. 

I know she would be pleased 

to see what we've accomplished, 

how we're working to resolve problems

that still exist and challenges we continue to witness.

Life is a process.

It's full of surprises, Mom would say. 

The best surprise: finding others sharing the journey.

Originally Published December 29, 2014. 

Mom's "100thyear". She passed the prior January.                                                                                                                                     

Blinders All In Place?

When you look around, what do you see?                                                                    I see you. Do you see me?

You see us as "privileged" with big houses you want.                                       We're "old" and we're "fragile"? 

 If you only knew . . . the truth is . . .                                                                             The challenges we faced are anything but new!                                

This home has memories, I know how to use the space.                                         We don't really care where -- it's all a "human race".

You "tried on" our shoes when you were small.                                                            Now your demands make you stand not quite so tall. 

Remember what we told you to someday recall?                                                       "The bigger they are, the harder they fall."

You're in a line you fail to see.                                                                                           Soon you will be "just like me".

Days turn into years.                                                                                                       Kids arrive and soon depart.                                                                                               You'll know what it means to have "a heart".

We dreamed your dream, we worked to gain.                                                             Now you're out to take and claim.                                                                                   You can't repair or begin to replace.

I stood in lines to be turned away.                                                                      Never knowing if I'd have enough food or gas day to day.                            

Pumps closed down, reached quota, turned away.                                                 Return when odd numbers allow us  to try another day.

You think you're the first to see quotas and limits?                                                       Think again my young friends, this is just the beginning.                                    Repeat Performance as we spin in space.

Simply trying to live "The American Dream".                                                                     Why are nightmares all we have seen?

Food Share lines continue to grow.                                                                                 We "checked out" and chose a few months ago.

Today we're told, one only, please, the line is long.                                                           We take a share and try to be strong.

World Wars and catastrophes bring these needs.                                                       Why is it a common and repeating scene?

Mom Lived Four Plus Decades With Us

I smile and even laugh today; 

back then it was confusing,

even upsetting to listen and watch; 

we did not understand 

this was her brain 

trying to express, 

sort through & communicate.

Now, I realize it was a sign of Dementia

Words were inserted into sentences 

as though they belong in a specific place 

and have a specific meaning.

 

It's not random; 

it's as though the brain 

is simply substituting.

I often read about other LBD people

who've been highly productive, 

intelligent and involved in life.

I wonder if having an active 

and capable brain causes 

the long roller coaster ride?

Until it finally totally 

engulfs and destroys --

often in the very last breaths of life.

My oldest son believed 

I was keeping Mom 

from talking with him.

 

Hundreds of miles away, 

no "Zoom" back then.

A Cell Phone

was "new" to Mom.

 

She would press buttons 

ending conversations .

Mom's hearing was 

in the process of change.

Common, we're told,

as the brain and ears

work with one another.

Those who live long distances 

from someone with Dementia,

who do not have personal interaction, 

often blame those who caregive, 

for creating many negative actions.

The phone was small. 

Coordination was needed.

She'd used a dial phone.

This was smaller and had no cord.

Her brain did not know up or down.

She'd constantly turn it round & round.

My oldest son claimed 

we "took away" 

his Grandmother's phone 

and wouldn't let him talk with her.

 

Far from the truth.

We had no cell phones like today.

No way to see the other person.

Mom's challenging vision,

Blind in one eye,

Was not a challenge 

With "old style phones".

Time passed.

If she was in the room 

and the room phone 

was allowed to ring many times, 

she didn't know to pick it up.

To watch someone you love

Walk down this path,

The Hurt deepens.

When others accuse you wrongly,

The pain never stops.

When daughter or I called, 

we thought she wasn't in her room, 

perhaps too far away, 

in the bathroom, for example.

We thought of "Mom", "Grandma",

as she had been for so many years.

She was soon to be 100 when she passed.

We see with our heart

We tell our hearts to adjust.

Aging can be hard to manage.

When someone you love is involved.

A Higher Calling

You came into this world                                                                                            needing to be fed, changed.

Care, concern, consideration                                                                                                                                                                                                                        by those around you.

Then you became less                                                                                                                  dependent and more defiant.

Assets and Liabilities 

depending on being 

born male or female.

Some see each as 

life generating, 

one life limiting.

Generations past 

heralded the birth of a boy 

as continuation of a family name, 

the passing of property.

Women just a vessel 

through which this goal became?

Some give more power 

to those who carry the "seed".

 

Others believe it's not in sowing 

it's in the cultivating we achieve.

If procreation is the only 

measurement of worth. . .  

what's to be done 

when a woman fails to perform?

Generations of women                                                             lived as subservient                                                                     first to fathers,                                                                         then to husbands. 

They had no individual value, 

they weren't even an extension,

 

They were breeders and instructors, 

staying home, given an allowance, 

expected to follow, never lead.

Why turn back the clock, 

reverse direction.

What's the purpose?

Did we make a "U Turn" 

somewhere since the 1950's?

When you love someone,                                                                                               you sometimes look past                                                                                            what's in plain sight                                                                                         including mental, emotional,                                                                                         and physical changes.

For a period of time 

Mom could speak 

on the room phone.

Watching and listening, 

hearing and more fully noticing 

various progressions 

or lessening of skillsets.

 

I believe she was progressing 

in deterioration/loss 

of various processing skillsets.

She'd often pick up the phone 

and didn't know which end to

speak into and which end for her ear. 

Mom was still good at "covering up" 

and had the ability to laugh at herself; s

he sometimes realized the phone 

was wrong side up for listening/speaking. 

The Dementia progressed to where

she no longer had this recognition.

Mom never ceased to amaze me, though. 

I'd spend time with her, 

notice what I felt were changes, 

think they're now a fixed behavior, 

then on another visit, 

not necessarily the next, 

that change would not be evident.

This was one of the "masks" 

I've talked about with Lewy Body Dementia; 

off and on, sometimes fixed sometimes loose, 

never knowing who was really there.

Mom seemed to stare a lot more than she used to. 
Yes, she had sight challenges and the hallucinations

made that condition even more challenging. 

Or, could medications Mom was receiving

produce these "side effects" and we didn't realize?

She fixed her gaze more often,

seemed to be staring off into space,

without appearing to be thinking or focusing.

tTrance like. Dementia or medications?

We've all "drifted off" from time to time 

on a thought or concern. 

This is how Lewy Body Dementia can affect 

in later stages and so we assigned this for years 

to LBD when maybe we were wrong, 

it could have been the "Meds".

We made many "missteps". Daughter and I.

We tried to remedy as we moved towards the unknown.

Not understanding aging and what it holds.

Mom remembered certain actions needed to be taken'

while in the process of doing the action,

she'd reverse her actions and undo what she'd done. 

She usually remembered she's supposed to lock 

her wheelchair before attempting to transfer to her chair.

She'll lock the brakes, move her hands and then believes 

she's not locked them and unlocks them. 

Hindsight is always so much clearer. 

Advancements in the short time since I started writing 

in the field of Neurology & Lewy Body Dementia

have moved light years ahead. 

Today, I've somehow gathered the courage

 to "go public" with our challenges and share 

the problems and possibilities we uncovered.

I look even farther forward to the additional ways

I can add to more individual walks along the paths 

we maneuvered so precariously.

Mom loved to read and she was a life long learner. 

I know she would be pleased 

to see what we've accomplished, 

how we're working to resolve problems

that still exist and challenges we continue to witness.

Life is a process.

It's full of surprises, Mom would say. 

The best surprise: finding others sharing the journey.

Originally Published December 29, 2014. 

Mom's "100thyear". She passed the prior January.                                                                                                                                       

Back Of The Line

You served your purpose.                                                                                               Then the time comes when the kids step in.                           

They get out the old pictures.                                                                                             Of their Gram or Gramps.                                             

Living in a Nursing Home.                                                                                             Used as a reference point.

Life Moves Forward.                                                                                                       A spouse, a parent, another focus in life.                                     

I remember it well.                                                                                                           All those times we put "you" first.

You expanded your life reach.                                                                                       You find less time to connect or contact.                                                   

We taught you well.                                                                                                         To take care of your self.              

You've added many responsibilities.                                                                             We are just one more on your to do list. 

You live far away; you have kids of your own.                                                               You work and need play. 

Seldom including me/us is your way.                                                                              After all, it's just another day.

Separating your life from mine.                                                                                       There's just never enough time!                                                                  

Your kids want to go to college.                                                                                     You like to take family vaca's.                                                                                           Have work responsibilities.

Supporting kids holding out open hands.                                                                         They're not there to help.                                                                                                 They have their own plans.

We've been there, done that,                                                                                     looking forward to the day                                                                                           when we would be FREE.                                           

Cost of living keeps rising.                                                                                     Capabilities cease.

You spread your wings we gave you to fly.                                                                     Then we heard you whine and cry.

The "kids" need this became the "kids" want that.                                                             Now you see our "savings" as your "investment'.

We provided you the ways and the means.                                                             You lived a life higher than we ever dreamed.                           

We now need your help.                                                                                                    Will you go or will you stay?                                                                                           Or do you live . . . Way Too Far Away?                                             

LTC Practices Endanger Residents

Truth be told, I've not been visiting Carol

like I did for many months. 

It brings back memories of when my mom 

was in the same facility. 

The lies. The half truths. 

Watching Carol die a little more each day 

not because she's that sick but because 

what is NOT being done for her  

taking her life an inch at a time.

Reported to DHSS about the overmedication 

of anti psychotics including possibility 

some meds caused Carol's hands 

first to tremor and then a couple of months ago 

to "freeze" into not clenched fists but "frozen".

In claw like shapes not able to use her hands.

Facility was given a "slap on the wrist". 

She can't feed herself.
She's "offered food" but often cannot talk.

The food is pureed -- looks like something 

that comes out of you instead of goes into you 

and imagine the taste is almost as bad.

Carol refuses the food. 

The LTC sees this as "the end".

It's been going on for a very long time.

The only thing that keeps her alive 

is the weight she had that will soon be gone.

She doesn't refuse what we bring to her. 

She's starving. 

They claim it's typica:l "Last Stages of Life". 

They don't take the time and they don't care. 

The Facility convinced her to go into Hospice 

If she doesn't want to go to the hospital. 

That was the only decision she could make.

Carol has no Advocate.

No family member.

.

She's lived in an LTC for many years.

Her "value" is decreasing.

She's had multiple medical incidents.

Department of Health & Senior Services?

Elder Abuse Hotline?

They say their hands are tied.

 

A Dr has prescribed the medications.

One Rep of the DHSS told me.

'"If a Dr prescribes medication--

it's because it's needed." is the Mantra.

Right! A Staff Doctor who increases 

their "payroll" based on "services rendered"

including simply reviewing a "stack of updates"

all designed to portray a caring environment.

OFTEN FAR FROM TRUE. 

Meds are used in LTC's to control and restrain.

Dr's are "hired" and "paid by" the LTC's.

Loved ones and others never really know what's given 

unless they have a POA for Medical Care.

Suggest that person look at the latest Stats 

for LTC's, Medical Professionals abuse of drugs 

both personally, professionally and through prescriptions.

From an AARP article: 

www.aarp.org/health/drugs-supplements/

info-09-2011/doctors-overprescribing-

antidepressants-health-discovery.html

"Nearly four of every five prescriptions are written 

by primary care doctors and specialists 

untrained in psychiatry 

who are dispensing powerful drugs 

that may have either no impact or harmful effects."

How would you like to be "used" 

when you're no longer a profit center 

because you need more daily care for toileting etc.?

Remember how they convinced Carol? 

They knew she didn't want to go to the hospital.

It's challenging to find information online 

about this "practice" because older people 

are "expected" to die and so when they do -- 

well, that's just what happens. 

Is it? Or is it more profitable in the short term

for the increased costs, less care 

and then when the bed "vacates" 

another ability to fill it 

with someone who needs less care.

The following is from a publication of the 

California Advocates For Nursing Home Reform:

http://www.canhr.org/publications/newsletters/

NetNews/Feature_Article/NN_2014Q3.htm

"In my experience when a patient is certified 

for hospice, the hospice provider routinely orders 

rental of an expensive hospital bed and various 

expensive breathing apparatuses whether the patient 

needs it or not, and bills accordingly. 

"Once the patient’s hospice category is set, 

and the reimbursement set accordingly, 

of course profit goes up if that care 

can be provided by fewer personnel 

or in less time, just like in a nursing home 

and other businesses, and the least able 

and most vulnerable among us 

can be treated accordingly."

"A second important reason for long times 

on hospice for people who are not on 

the verge of dying is that they are 

very good business for hospice providers." 

See, e.g., “Medicare Rules Create 

a Booming Business in Hospice Care 

for People Who Aren’t Dying,”

Washington Post, Dec. 26, 2013.

You think the above are all "old" articles.

Think again. Reduction of support for Elders.

Taking away their remaining quality of life.

More prominent now than ever before.

Reduced financial support from the States.

Fewer Ombudsmen and more facilities.

Is this what you want for your loved ones?

Conditions some animals face and also do not deserve?