Life Times Three: Living With LBD
Three generations shared life together for decades in one household. Daughter and granddaughter set aside their lives to care give for two family members at home. Life challenges of undiagnosed advancing Lewy Body Dementia and medical challenges of MRSA tore apart the family unit. Writing, reflecting and researching then and now to shine light into holes in our society's safety nets for the aging, care givers and families.
Monday, October 21, 2024
To Move Is To Live
Tuesday, October 15, 2024
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.
Friday, October 11, 2024
Broken Family
Sunday, October 6, 2024
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.
Friday, September 27, 2024
Masked Faces
How often we "put on a face" in life. Smile for the camera!
I just went through pictures of Mom.
Mom always tried to open packages with great care. trying to "keep the paper intact to use again".
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.
My first entry was "When the Child Becomes The Mother" back on April 8, 2013.
I had no idea then it would be less than a year after that date Mom would leave this life.
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.
LBD is a MASK like those worn for Carnival or Halloween.
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.
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 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.
Friday, September 20, 2024
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.
Friday, September 13, 2024
Isolation & Shelving Grows Dementia
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.
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?
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.
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.
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.
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.
Friday, September 6, 2024
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”.
Saturday, August 31, 2024
Connecting Dots
Day after my birthday.
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.
Tuesday, August 27, 2024
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.
Sunday, August 18, 2024
Get A Real 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?
You can't do anything different.
I am
If I am silent,
People seem to not want to talk about Dementia.
MENTAL CHALLENGES ARE STILL VERY FORBIDDEN AREAS OF DISCUSSION.
My husband also had mental processing challenges due to the administration of several drugs.
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.
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.
DRUGS. GIVE HIM MORE DRUGS.
He was expressing feeling, need or concern.
The husband could have a reaction to meds he's being given.
The husband could have unfulfilled needs.
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.
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.
Look beneath, beyond and read between the lines.
We do not age as one.
Friday, August 16, 2024
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/