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?

Care Giving Errors & Omissions

What's it really like to "caregive" at home?                                                         Depends on relationship, family unit, resources, income.

Who comes beside and "gives help"?                                            Or will you depend on "outside sources"?

I took this journey with Mom and then husband.                         Daughter in College, Sons lived across country.

Who has given and gave up the most --daughter.  Women continue to be those expected to "caregive".                                            

In the United States, you're "expected" to have Health Care.                                       paid for monthly to "offset" the costs of living as you grow older.

In reality, spouses/partners are the ones providing.

Income for many has stopped.                                                                       Expenses climb.                                                                                 Debt hills and then mountains.

My husband spent 100 days in the Hospital.                                                               Almost all of that time in Critical Intensive Care.                           Home to a Hospital Bed Insurance didn't cover.   

For a little over a month, we had biweekly "visits".                                                           A "medical person" who "checked on" my husband.                      

After two weeks I was told visits would be ending.                                               Training on wound care minimal.

Skin was weak, openings appeared.                                                  Quickly they expanded to one, very long.

           

Memories Stick Like Glue -- the bags did not.

One bag became two, then three and finally four.

They filled with liquid quickly.

He could no longer get up and take care of emptying the bags.

I had 24/7 "duties" and no one to help.

Our oldest son, who lived across the country, never came to visit. When I asked for help, he told me I didn't know how to manage and I made his father sick.

On all sides I was torn apart;Doctors kept saying he needed to gain weight. 

They saw the bags, how they multiplied, until he could no longer do Dr visits and all they saw were an occasional report from a Nurse who came less and less frequently.

BE WARNED. YOUR MEDICAL PLAN IS YOUR LIFELINE.                                          What you receive, how you receive it and if it's even given is strictly done based on "how much you can spend" either from savings, insurance or prepaid programs. 

Told constantly: "Your husband needs to gain weight." 

Those were the "Doctor's Orders" and it became the mantra on every visit which quickly ended as our "time" ran out.

"The Doctor" says this can be done or that can be done.                                          We did not realize "the Dr" was using the inclusions of the Medical Insurance; no compassion or concern involved.

I trusted. I listened. I believed. 

They were the "experts".                                                                                                   I trusted their "professional ability".

They knew. They had to see.                                                                                   They'd cut into him.                                                                                                    A lancing that never should have happened.                                                                  The beginning of the end. 

The Widow's Walk is unplanned and unwanted.                                                         It happens every day.                                                                                                       It's a Sisterhood no one wants to join.

Taking Away The Car Keys

Daughter & I have some "interesting" talks.

Often on the spur of the moment and least expected.

"How do I take away your car keys?"

This was the question the other day.

Like "the talks" we've had as she transformed.

From "little girl" to "young woman"

Now she was"the leader" and I "the follower".

Shoe is definitely on the other foot.

Adulthood, responsibility, changing places.

Understand she's trying to find "the right time".

I get it, I really do. She's concerned.

My Mom lived with us for decades.

Our lives and hers were intertwined.

We were a Multi-Gen Family.

Now, she faces my aging. 

As I did with my mother.

 

I move into my Mom's"shoes"

Daughter slips into mine.

When we're a child we want to age.

When we become an adult we know better.

Life has pattterns.

Some we create, others take their own form.

I had just driven her to join her carpool. 

We were sitting waiting for her ride.

 

A few moments of silence. 

This "thought" came out without any warning.

Always championed children's questions.

We could talk about almost anything.

They were also taught about "time and place". 

Not to offend by some statements or questions.

What will I think, how will I act?

When I am in need of turning over the keys?

My precious mobility.

Freedom to come and go. 

Work and play, here and there. 

With whomever, whenever, wherever.

We need to have this conversation.

My daughter asked when my Mom stopped driving. 
Much better statement and approach.

Complimenting her choice of words 

I tell  myself, she's still a quick learner.

Hold that thought. 

Retain that phraseology.

Open Communication.

Low bridges, quick stops.

Wherever and however 

We journey together!

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.

Dementia Talk & Walk

 Moms, Dads, kids, have “the talk”.                                                                          Once in a lifetime? Perhaps more than once?

Walking away. Believing “duty” performed.

Sigh of relief feeling it’s done.

 

Who talks to us about Dementia?

As we run through life looking only ahead.

 

Who cares if we move backwards not forwards?

Struggling with an opponent wanting only to win.

 

Unnoticed. Unrecognized. Unwanted.

Why? When? How? 

 

“I think therefore I am” runs through yesterday’s mind.

“What was I thinking about……” now rings in our ears.

 

You can do this. You’ve always done this. 

Please, just try. Please . . . just . . . try . . . 

 

Where am I going?  

Where have I been?

Why do I want to?   

Why should I care?

 

Leave me alone. 

Isn’t it what you want?

Isn’t it what you need?

 

HEAR “ME”. SEE “ME”

I am here. Have been. Will be. WILL YOU?

 

Eulogy For Those We've Lost Along Life's Way