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.

Masked Faces

Cell phone pictures can be chronicles of life and death.

How often we "put on a face" in life. Smile for the camera!

See the surprise, love, caring, passing of time on her face.

I just went through pictures of Mom.

In boxes & on my phone.                                                                                     Snapshots over the years of her life, our life together.

In later years so many pictures of Mom "daydreaming".

Appearing to be somewhere within her mind, 

With us sometimes briefly and sometimes deeply.

Her eye focus changed; I see that now. 

Her facial expressions lessened.

Smiling, reacting to common daily actions faded, slowly at first.

After her last birthday, we noticed she was losing                                                      the ability to remember common actions.

She didn't understand how to take the wrapping paper off a                                         present and couldn't open the untaped box with new clothes. 

Mom always tried to open packages with great care.                                                      trying to "keep the paper intact to use again".         

Valuing, knowing the end of times come without warning.

Being prepared meant survival and continuing.

A child of very little means growing up. 

A young woman during the Depression.

 

She taught us to "use it up, repair it, make do or do without".                              Lessons for survival providing more than we'd ever expected.

I remember her ability to communicate and even seem to be cognizant to one degree or another up until about two weeks prior to her passing. 

No one prepares you for this major capability change.

My first entry was "When the Child Becomes The Mother" back on April 8, 2013. 

As I re-read this and other entries I know the time has passed.

It just doesn't seem possible it's more than a decade.

I had no idea then it would be less than a year after that date Mom would leave this life. 

Looking back, reversing roles started long before that date;  many adjustments to ensure her safety and personal well being.

Subtle messages of what was to come. Trying to survive, work, visit her every day, we didn't clearly see what was happening before our eyes. 

Life moves in multiple directions all at one time.

LBD is a MASK like those worn for Carnival or Halloween.  

(Today, I can also reference the masks we wore during COVID.)

It's often like those with a stick someone puts in front of their face meant to hold it in place or it can be removed to see the "real" person underneath.

Later, it appears to be the kind that are put on and have a ribbon to tie in the back you can lossen to drop down or remove.

As time passes, the MASK becomes the type with the stretchable band around your head or ears.

It's always there sometimes slipping down or confusing others as to who you see and who you don't.

With LBD it only goes down the front of your face and remains around your neck.

Then, the MASK changes completely and it's painted on the face; always there, always prominent.

We had no roadmap to guide us, no specifics as to this disease's progression in behaviours and observations.

We were constantly guessing as to what to do, how to act.

We had decisions to make to ensure we provided for and protected Mom -- from herself and often from the acts of others who simply did not care to find out about Dementia. 

And, because no one ever counseled us or provided any information about Dementia, we wandered through this time as though in a fog looking for the Sun and a little light.

We took pictures and we took videos. At the time, many, to try to understand and explain to my son, who couldn't be with us, his Grandmother's actions and behaviors on any given day.

Often, especially in the beginning of her "last" months, her ability to talk and "fake" responses through common comments and even through appropriate responses (son:  Love you Grandma! Mom: Love you, too!) caused him to still question his grandmother's deteriorating health and the effects of the LBD.

We took pictures to chronicle the numerous challenges we faced with Mom's Skilled Nursing Facility.

Highly recommend anyone with a loved one in a facility take advantage of the ability to chronicle/document what few people see, hear about, or realize.

Lewy Body Dementia doesn't just place masks on those whose bodies it invades, it puts masks on SNC staff and everyone who attends the men and women who live there.

(The above was originally written March 14, 2014) 

Very little has changed and this is September 2024. 

Darkness surrounds Dementia of all types.

I continue my journey shining light as I go. 

Attending conferences, meetings online and in person.

I want to raise funding. My pockets are not deep. 

Advocating, Raising Awareness.

Encouraging others to seek counsel.

Support their walk with loved ones

Pointing the way to resources I share.

Amazed these words are being seen around the world.

Realizing we share concern for one another.

Grateful to see I am not alone and my words can give hope to others as I continue this journey I feel I've been given for a reason and a purpose.

Finding Four Leaf Clovers

Why did my finger stop today on one specific photo?                                               A smile was needed, it had been a rough day.                                                                 It was on a site I visit infrequently.

Was it meant to "pop up" today?                                                                                 To remind me of Mom in a special way?

I believe there's a reason;                                                                                             We don't always see when we first look. 

It takes time to absorb and understand;                                                                        the power of the past in the present for the future.

In Spring, Summer & Fall,                                                                                         Mom would walk on the sidewalk.                                                                 Suddenly, in the grass,                                                                                                   She would spot a Four Leaf Clover. 

She would bend down, carefully pick,                                                                               offer it to whoever was walking with her.    

It gives me hope, once again,                                                                                             along with the struggles and the challenges.  

There are bright and shining moments,                                                                             continuing positives surrounding our daily lives.                                     

Mom gave the gift of sharing & caring to everyone.

She didn't have to look for it.

The good luck symbol found her.                                                      

And often it wasn't just one. 

Mom always found and saw the beauty,                                                                   the love and the possibilities,                                                                                       even in the darkest moments of life.

I miss her. I miss my husband.                                                                                       The "good" memories of times past guide me today.              

We Women prefer to see the Rainbows of Life.

We weather the storms,                                                                                                       We struggle in the darkness,                                                                                              Celebrating the light emerging & shining through.

Our belief is tomorrow, if we work for today, will be better.

The photo, a "wealth of 4 leaf clovers"                                     

My Cousin's daughter has a "family gift".                                                          Reappearing generation to generation.                                                                       

Finding "joy" and "hope" beneath our feet,                                                                     on our path. . .  just look for it.

It gives hope there are bright, shining moments

Continuing positives surrounding our daily lives.

Isolation & Shelving Grows Dementia

What if some of the "problems" of Alzheimers and other forms of Dementia were discovered to be more social rather than physical?  

Cultures other than the American system of caring for the elderly have provided evidence many behaviours and actions can be managed without drugs or "shelving" people in an institution.

This includes activities both mental and physical provided in Adult Day Care Centers and Long Term Care Facilities which generally shelve or "park" people with Dementia at certain levels or stages.

Understanding which parts of the Disease are manageable and moving to ensure resources are available is critical. 

Why aren't we cross applying findings in medicine and behavioural studies to benefit Dementia patients?

Touch.  Many of our elderly go from day to day only experiencing the touch of another human being providing necessary medical procedures or daily life skill assistance.

I've seen more caring from the receptionists and cleaning/maintenance staff at Mom's SNC than I have from most of the CNA's, LPN's, the RN and the Adminisrtative Staff at the facility.

How long would a baby, infant or child survive and how greatly would they thrive if we denied this comforting human interaction?  

Remember the children adopted from foreign countries who were isolated, denied human kindness/touch? 

Speech. How often does someone sit and talk or involve more than one person in a conversation -- even if the majority of the talk is done by the "caregiver"? 

                                                                                  

Human Contact.  Visiting A Loved One. Look around, say "Hello", stop a moment to talk. Give the gift of a moment of time so valuable to those for whom time seems to be never ending between times of human contact.

Recognize the humanity of all with whom you come in contact while visiting a loved one in a facility. 

Spend a moment; give someone the greatest gift -- human interaction.

Most "interaction" at Mom's facility has a purpose -- analyzing and charting. 

If someone doesn't want to participate in the group activities at Mom's center, it's entered on a chart.

When I visit I see many people who barely get out of their rooms and who are becoming more and more "dependent". 

Some may have mental challenges but many of those seem to have "developed" with the systems and procedures used in the facility.

One dog and one cat live at Mom's facility.  The dog is older and very set in his ways. He used to take the elevator, go to various floors and "roam". Now, he lays around, has put on lots of weight and often moves away when people approach him -- or sleeps most of the time. 

The cat is "isolated" in the Activities Room so only those people who visit that room get any interaction and she, too, is a loner.

Occasionally a couple of dogs are brought in to "visit" residents and you can see the joy in the Resident's eyes and in their bodies. 

They virutally light up and wait patiently hoping the dog will be brought to see them. 

A few residents have family members who bring in dogs to visit.               

Unfortunately, these dogs often don't see anyone but their owners and I understand they're not all "trained" to accept other people.

What's needed is more frequent interaction of residents and animals.

Humans thrive using our senses. When they're deprived or eliminated, at any age, our body functions are greatly affected along with our brains. It changes our personality, our outlook, our behaviour.

Let's find more ways to give Seniors interaction with humans and pets. Let's stimulate their brains, their positive emotions and build healthier lives for all.                       

Gimme

What’s with this surging need?                                                                                 Demands the old hand over, recede.

I can stand or lean any way I choose.

At my age, not much to lose.

I sit and type and wonder why

The words come flying out of “the sky”.

Have they been hiding all along

If so I’ll use them as My Song.

Am I poised to live and learn

Will I continue to actively earn?

So many questions, far less time

Will I burn or will I shine?

Does it matter any way 

If I choose to have my say?

Like bursts of light.

Words join as if in flight.

 

Like Geese in the air

They join and create.

They fly away

To live another day.

Winter is harsh

It hides their food.

We humans see.

We’re not fools.

Each finds their own tools.

To survive and to wait. 

Knowing there is an expiration date.

While we can, we do.

When we can’t, we won’t.

Today I have the choice.

Today I raise my voice.

Megaphones can screech

Across the electronic page

Telling me I’m worthless

Just because of “age.

Then why, tell me please,

Do you want to incur

More candles each year

To blow out in a blur?

You can’t wait to age 

You see it as a “perk”

Let me tell you, my “friend” 

That’s acting like a “jerk”

Value what you have

Embrace where you are

Soon you’ll hear the shouts

Causing you to doubt

Others have been born

They demand a place

Wanting to take yours

It’s going to be your fate.

It’s a life story

Filled with doubt and worry

Stand up, speak out

It’s never too late

Spread love

Not hate

Strange how survival is seen as distress

It causes concerns and such a mess!

From what we achieved

And refuse to “secede”.

Connecting Dots

Just had a Hospital visit with a Cousin. 
Day after my birthday.

Received a call. 

Another Cousin passed.

Hand of time descends Generations.

We came together.

We moved apart.

Not all memories with both are positive.                                                                           We carry the burdens or set them down.                                       

I move on knowing we came from one source.

Sharing experiences now long set aside.                                                                   Seeing differences and recognizing similarities.

Happy for their times of celebration.                                                               Sadness for losses along life's journey.                     

Not all memories are cherished.                                                                                     Pick up an eraser and forgive.                                                                                           Pick up a pen and enlarge.                    

How long will my journey take? 

Will I start where I'm going forgetting where I've been?                

What, which, when, how -- will I be able?                                                                   Recognize. Develop ways to cope. 

Lives lived and living can vary and change.                     

How we measure, apply and use often are within our grasp.               

Times & places we did not see for what they were.                                                   Remembrances that can harm or hurt.

My life. Theirs. Ours. For what time we do not know.                                               The privilege I have and may lose is to determine my paths.

Trust, belief, caring, sharing times made to recall.

Will this also be lost as we age; is it always the only way?

Looking for answers to questions and finding riddles instead.

Memory holes replace clutter.

Why THIS journey and not another? 

How do we end when we made no choice to begin?

We were given time. Choices along the way. 

How much can we handle, manage and accept?

Do Not Blow Out Candles. 

Light them instead. 

Search for your tomorrow in each day that remains.

Become, grow and give to others. 

Be aware they watch & wait.

Your journey renews each day you are given.

Waste Not These Precious Times.

Money, Money, Money

To have and to hold, til death do us part . . .   

Planning and celebration followed by change and fears

I think therefore I am, only as long as I can 

My everyday life and living.

The road we walk, from here to there                                                                       

Winds, climbs, turns and drops

In control, at the helm, able to steer, able to halt. 

Decisions I make point to the direction I take.

Would it were so easy as years flying by

So many aims for pie in the sky.

We're told we can make it if we just try.                           

Decades added swiftly now.                                                                                                     

Time stands to fall around One and All.

I stopped expecting he would change

Like my Dad, he focuses on self.

Hurting those who gave and loved so long

Can't change a cat's stripes, the saying goes.

Ah, well, perhaps one of his five

Will someday see what's made them blind.

False, misleading, self centered lives

How sad the parent's focus, how sad their plans.

Can't change what he refuses to see. 

The harm they do isn't to "me".

It's self inflicted and self imposed

Some day he will lighten the load.

Until that time I see and I know . . . 

What waits ahead is pre-chosen

He can't serve two masters

Freedom did not change or end with me.

Sad he's not able to say:

"Let's stop this unneeded separation . . .

My behavior was wrong, I made many mistakes . . . 

I jumped to conclusions and put my "self" above all. . . 

That self centered focus is what causes a fall. . . 

Someday, my son, we'll meet again

You will be able to speak freely, will see far clearer

It could be sooner, if you so choose

We all have a very large amount to lose

Even farther as the road lengthens

As generations come and go.

It's your choice, as always, 

We do not sit and wait

Our lives filled with giving, not hate.

 Sad you've not seen the light 

The darkness called and you went.

Perhaps you'll wake up someday and see

You left the best behind when you hit the tree.

Get A Real Life!

Written Jan 23, 2017.

Husband, five, and Mom, three years, have passed. 

Seems like yesterday. 

I've moved forward -- my way.

My Husband. 

My Mother. 

Start to live again, I'm told. 

You "deserve" a life.

My life has been. . .Continues to be. . . Service to others.

Do we tell someone who's lost a loved one to Cancer to stop speaking out? 

How about saying to someone who has MS there's no longer need to walk for MS, talk about the "disease" or any other?

It's over now, get on with your own life.
You can't do anything different. 

What happened, happened.

I am

The voice of those overwhelmed

The hands of those trying to balance life

The voice of those who have passed, 

If I am silent, 

Their passing would be in vain 

Others could suffer the same mistreatment. 

Relationships and families tearing apart.

Tomorrow's capabilities through today's revelations.

If only I had known ...

If only someone would have... 

I raise my voice

Listen, Reach Out, Walk alongside

My Journey Continues

People seem to not want to talk about Dementia. 

They're willing to talk about Alzheimer's, the Association for the disease has made this one part of Dementia more "palatable" and more "acceptable" because the name doesn't detail as directly the fact the disease is MENTAL.

MENTAL CHALLENGES ARE STILL VERY FORBIDDEN AREAS OF DISCUSSION.

My husband also had mental processing challenges due to the administration of several drugs.  

DEMENTIA LIKE BEHAVIOURS AREN'T LIMITED TO AN AGE.

Down's Syndrome. Multiple Sclerosis. Concussion. Brain Damage due to accident or birth related affect lives, Medications

Mental Health is often thought of as either being a grave illness, a birth defect or an accident of life. 

Mental Health management to most medical practitioners means use of drugs to alter or control.

I seek to find other ways to see, understand and find ways to caregive for and with loved ones.

Visiting our friend in Mom's previous "home", her Long Term Care, I overheard a woman who was leaving the facility talking about her husband.

She said how "good" he was when she arrived. 

Then, she said, he ate and his "behaviour" became difficult. 

She said "THEY" were going to have to do something.

Give him something to change the way he was.

DRUGS. GIVE HIM MORE DRUGS. 

Alter his behaviour to reflect what "she" felt comfortable with. 

He was expressing feeling, need or concern. 

It was not in a way "she" found acceptable. 

A wife like many medical professionals. 

Seeing what's on the surface not looking for the cause.
The husband could have a reaction to meds he's being given.
The husband could have unfulfilled needs.

He might have had a bladder or bowel release and was uncomfortable but his declining mind could only interpret it through anger, hostility or negative action.

TODAY'S COMMON REACTION TO CHILDREN AND THE ELDERLY IS to drug them. It's not new, practiced for decades.

Make them docile. End the behaviour through the simple swallowing of a compound that may be an underlying cause of the behaviour.

Delaying, not resolving, never recognizing it's not control the person is displaying, it's the inability to affect possibly physically and/or mentally.

How many drugs have we found once thought to cure or solve a problem cause severe reactions, complications  worse than the problem, or even DEATH.

Remember Thalidomide?  Look it up. Use the Internet to learn from respected, non partisan sources to grow knowledge and find ways to support positive actions.

We don't consider "aging" to move from being an infant through to an adult, but it is.

We don't consider "aging" as a negative and something to want to turn away from or fear until we start to listen to the voices chanting the mantra of AGEISM.

Listen carefully to what is said around you, to the voices crying out and the whispers that surround -- see the change, the rotation, the movement from those who "have been" to those who "are becoming".

Watch and listen closely. 

Open your eyes, your mind and your heart.
Look beneath, beyond and read between the lines. 

We do not age as one.

We age as a society.

We grow older with one another -- if we are wise, that is.

Women Of Great Strengths

Strong Women  

Every day I see them. 

Do you see them?

The Caregivers, Workers, Leaders, Women With Purpose

Some stand out while others move mountains unnoticed.

Gladys Burrill ran a Marathon, at Age 92

Burrill earned the Guinness Book of World Records as the oldest female to complete a marathon. 

At age 92, she finished the race, which took place in Honolulu

in nine hours, 53 minutes 16 seconds.

 

Diana Nyad Swam from Cuba to Florida at age of 64

In 2013, on her fifth attempt at age 64, Diana Nyad 

was the first person confirmed to swim from Cuba to Florida without the aid of a shark cage. 

The journey was 110 miles long and took her 53 hours straight.*

 

My Mother’s Mother birthed 11 children with all six boys serving their Country during WWII and grandsons volunteering for Korea and Vietnam. 

She chopped down a tree in her yard with a trunk that was 8 to 10 inches wide at the age of 87 because none of her six sons could find time. 

My Mom, walked miles for school and for Church. 

She was a caregiver for her siblings and did work at home until joining her older sister at the age of 13 doing housework for those "more fortunate in life" to send money home for the "younger ones" and then taking in the youngest girl and giving her a High School education.

In her early forties, to prepare to leave an abusive husband, my father, she studied Chemistry and Human Anatomy to pass tests to become a Beautician, now called a "Stylist'.

In her mid fifties, she fell and broke her wrist, had to close her beloved business and joined our family with one son, a few months old; our family would grow to another son and daughter.

From the time she was 65 into her 90’s, we encouraged her and she traveled the world, walked the Great Wall of China, was in Germany a week before the Wall Came Down, in Tien Mien Square two weeks before the demonstrations. 

In her mid 80's, she took our pre-teen daughter on a Nile River Cruise visiting the Pyramids and walking significant distances to share her love of other cultures and places. 

We started a Multi-Gen family lasting over forty years.

 

Genetics, the right food and keeping active physically and mentally along with the financial means and interest can take us far beyond what we think we can do.

If they can, I can, You Can -- with a little physical and mental "luck of the genetic draw", focus and determination.

 

*https://www.careline.co.uk/success-top-10-late-bloomers/

When Daughter Becomes Mother

Originally posted April 8, 2013; Mom would pass January 2014

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 and 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" (which Mom blames on her "new" shoes; slippers she's worn for many months).

Her arms do not support the shift in weight from wheelchair to commode (and she definitely 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 because the body generally moves to some degree but not with the support or ability it should have.

There are many reasons for her refusal including the most obvious: Mom wants to retain control of the basic parts of her life and toileting is one of the most basic. 

The diminishing ability and the frequent loss of bladder and bowel function that has been more and more prevalent is probably a sign of more significant physical changes internally.

We've noticed some patterns and try to watch for related developments/causes all without any support from the LTC.

LBD and Dementia raise the level of risk taking we tolerate or allow in our loved ones to try to give them as much "personal freedom" as possible. 

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 a child there are so many "firsts" and so many "what if's" 

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 into a future of uncertainty.

Some days, even some hours, change and fluctuating abilities cause sheer exhaustion on the part of the care provider. 

You never know what "age group" you're dealing with or what

"level of ability" is actually present.

Last night Mom talked nonstop; knowing the family history so well I heard years and events mixed up, run together, totally opposite from what we'd experienced in the many years we shared together.

Mom didn't recognize me and so she talked to me as though I was someone else. She was not at all happy with "her daughter" that evening so this "person" heard about all the "bad things" her daughter did to her and continues to do to her.

Swallowing my pride, I listened, allowed her to "rant". 

My concerns are the uninformed attendants and those "examining" my Mom who don't know the real family history 

and actually believe these distortions and twists of reality. 

That's where understanding Dementia and especially Lewy Body Dementia are so important.

It was rough. 

Sitting there and having her negate our lives together.

We'd spent almost forty years as a multigenerational family. 

I know I'm supposed to "redirect" her; even when I told her who I was, she would remember for a while and then forget and we'd be "off and running" again.

As hard as it was to sit there and be verbally abused, I felt perhaps she needed to "vent" and blame me for her being somewhere she'd never wanted to be -- a Nursing Facility.

My problem has been workers in the facility and others I've encountered along this walk on the LBD pathway who listen believing what she says describes her life and our relationship.

It also doesn't help to still have to tolerate an abuser who continues to visit my Mom and who I can't stop from seeing her.

A story for another entry. 

It's a nightmare that's worse even than LBD.

Mom inserts words with no relationship to what she's talking about and when one time she realizes her mistake, laughs and covers her mistake by saying how silly she is and how she's just getting older and sometimes her mind just doesn't work as well.

She also believes she recently married a man she hasn't seen for about seventy five years who was just an acquaintance.  

Mom sleeps... a lot.  

She needs help cutting food into pieces and said last night she didn't want help because they cut it in front of her. 

Mom lets me and my daughter do it for her but someone else doing it, as she said, is too much to bear ... being not capable.

She needs clothing paired and not too much in her room or she can't make a decision on what to wear and spends the day dressing and undressing. 

This is a real challenge because she's started soiling and wetting her clothing and if I don't visit almost every day she ends up having very little to wear.

She has "tantrums" where she suddenly gets very angry.

I'm a prime target.  

She cries and "whines" about many things, then suddenly she stops and a few minutes later can be smiling. 

She's somewhat incontinent; it varies but it's becoming more and more consistent; she forgets to put on her "paper pants" and she wipes herself and then uses the toilet tissue as a washcloth on other parts of her body.

This "obsession" with washing started in the last few weeks. 

I've found her stark naked many times in her room or in the bathroom. She might have had a shower that day or not. 

She may have already "washed" for that day or not. 

But stripped down, often without clothing in sight.

Sometimes I've entered, stood aside and watched as for fifteen minutes or longer she starts washing, gets distracted by something (usually it's something she talks to herself about or to her "imaginary friends") and starts all over again time after time after time until I announce my presence and interrupt the endless repetition.

Last night after finally convincing her to eat the food on her dinner tray set in her room because she'd fallen and didn't want to go to the dining room, placing the towel she wanted as a "bib" around her neck and one on her lap, I convinced her to eat.

Another Lewy Body Dementia "sign", the tremors in her hand cause many bits and pieces she finally manages to get on the soup spoon she usually uses to feed herself to fall everywhere. 

After tearing her egg salad sandwich in half and turning away to reach for something, I turn back to see her with half a sandwich in hand using it as though it were a bar of soap and rubbing it all over her other hand and arm, switching hands and doing the same to the one she'd originally used. 

What a mess!  I've learned not to "react" to these totally incorrect actions but egg salad isn't exactly easy to control as it drips and drops all over the tray, her and the floor. 

Mom didn't even realize what she'd done but when she finally felt "wet" and "sticky" she asked why and when I told her what she'd just used to "clean herself" wasn't soap but the sandwich, she laughed and just went on to eat and continue talking -- often with her mouth full of food.

Mom shouldn't dine unsupervised but the facility can't seem to understand, doesn't want to help her or is short-staffed.

 (more later about the financial gain of SNC's in not fully recording or evaluating various physcial and mental needs) because some days Mom's behaviour seems quite "normal" even if her ability to self feed is compromised.

My Mom. My amazing, self sufficient, "rock" in my life.

She who held everything together.

The pattern for becoming the woman I am. 

My "rock" through many of life's hardships.

Slowly disappearing while I'm focused on learning where this road may lead so we can both walk down it together, supporting one another as we always did.

So hard to watch; to listen to; to talk about. 

So needing to share this journey others seem to pass by.

So challenging to discuss perhaps because it's so "personal".

Specific descriptions of behaviour shocking? 

Not "polite conversation"? 

If only someone had told me exactly what could happen.

These "non polite"  and "times of hardship" situations would have been less shocking and could have been handled better. 

Mom's facility doesn't "share" this information.

I have to see it to know it's happening.

I see sharing these most challenging behaviours and experiences as a guide to living with and surviving a loved one's journey into an abyss so dark and tumultuous that any light provided slows the descent and adjusts the turmoil for those who are slowly being left behind, in the dark and without the amazing person who's shared their life and their love. 

Mom continues to teach me as she always has. 

The only difference is the child is now the mother.

Adjusting, finding ways to understand.

Believing tomorrow will bring a better day when today has drained me through work, caring for Mom and continuing adjustment to becoming a widow.

You, my readers of today and tomorrow, may know more and have medical support as the years I'm in do not provide this knowledge and give no real comfort. 

Note: July, 2024. More than ten years have passed.

Change? Not really. More complications and challenges.

Long Term Care has advanced and stagnated.

Generally, the more you pay, the better the care -- not always.

Take heed, dear readers, as even with the knowledge, there will be those among you who will not comprehend the heartbreak during and the losses along the journey until your walk begins.