Mom, it has been exactly 7 months, 4 days and 3 seasons since you left.
But you are still here.
The doctor delivers the diagnosis. The words are blunt-force trauma to my brain: DeMeNtiA
***
Nurse Francis empties the pills from the tidy box into the palm of your pleading hand.
The air vent taunts its bogus chorus and chatter. You hesitate, yet you know. You ask: “Are the voices real?” “Are you sure?” “Why am I here?”
I lie the therapeutic lie; the lie that contests the diminishment of a beautiful mind, betraying itself.
And your watercolor portrait drapes like a curtain on the wall under which we sat for hours, sipping our coffee and wine; your granddaughter curled up in your motherly arms.
Byline of Maria Claire Wenzel
Prior to pursuing her love of writing and poetry, Maria Claire Wenzel, MSHCA, spent most of her career as a healthcare administrator developing patient assistance programs for individuals with chronic conditions. “The Feathered Watercolor”, was written for and inspired by her beloved mother, who suffers from dementia. When Maria isn’t pondering the million ways to split a vowel, she is feeding her chickens with her husband and daughter on their farm in Emmitsburg, Maryland.
Alzheimer’s Speaks Radio – Shifting dementia care from crisis to comfort around the world one episode at a time by raising all voices and delivering sounds news, not just sound bites since 2011.
Lori La Bey Can Help Your Organization Switch To Virtual Presentations For Staff Trainings, Family Support, Perspective Clients and Support Gatherings.
Accepting Dementia in Your Life
2 FREE SERVICE OFFERS BELOW
For a Complete List of Dementia Chats Videos – Click Here
We would love to here your thoughts and comments on this tip.
See What Others Have Say About Lori La Bey
I want to echo the thanks and appreciation of my colleagues… Your presentations were movingly authentic, fully engaging and wonderfully informative. Thank you for all that you are doing, and all that you’ve done for us!
Carla Koehl, Director of Community Relations – Artis Senior Living of Lexington
“Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.”
Pat Sylvia, Director of Education & Member Development LeadingAge WA
I know I should remember my name and how to dress, Yet I cannot fathom why I remember less and less.
Last week I went out shopping and
forgot where I called home,
I didn’t know where or who I was, I forgot I had a phone.
You are also getting tired, it’s plain for all to see, and I am not the same person, i am no longer ‘me’.
I cannot control my emotions, I shout out hit and curse, That’s why they came and got me, that’s where I met that nurse.
I can no longer tell you where I am or what is meant to be, But I do know that those ones in blue are there to look after me.
They help me with my clothes, they help me brush my hair, They help me try to understand why you’re no longer there.
I now feel less stupid by those ones dressed in blue, They care they love they laugh, my tears now falling few.
They point you out in photos, and talk of our life had, My memories of us together no longer feeling sad.
Our lives have turned out different, this was never part of our plan, But those ones wearing blue have turned “I can’t” into “i can”.
About Maria Weeks:
After qualifying as a registered nurse in 2019, she worked within a hospital ward setting until recently moving into a role within a nursing home on a dementia unit. Although she felt she would miss the clinical chaos of the wards, maria has been nothing but astounded at the level of care the care/nurse staff provide on a daily basis on the dementia unit. She wrote this poem as an example of how the staff here can transform a life lost to honour a ‘life lived’.
Do you think you know what we are rolling out tomorrow? If so, submit your guess via comments and you will find out tomorrow if you are right! Either way, check back for some exciting news!
Alzheimer’s Speaks Radio – Shifting dementia care from crisis to comfort around the world one episode at a time by raising all voices and delivering sounds news, not just sound bites since 2011.
Lori La Bey Can Help Your Organization Switch To Virtual Presentations For Staff Trainings, Family Support, Perspective Clients and Support Gatherings.
Accepting Dementia in Your Life
2 FREE SERVICE OFFERS BELOW
For a Complete List of Dementia Chats Videos – Click Here
We would love to here your thoughts and comments on this tip.
See What Others Have Say About Lori La Bey
I want to echo the thanks and appreciation of my colleagues… Your presentations were movingly authentic, fully engaging and wonderfully informative. Thank you for all that you are doing, and all that you’ve done for us!
Carla Koehl, Director of Community Relations – Artis Senior Living of Lexington
“Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.”
Pat Sylvia, Director of Education & Member Development LeadingAge WA
In the end maybe it doesn’t matter that they never wrote back That he didn’t apologize That the salsa stain on your cardigan never came out That your dreams fell asleep in the womb That you were often passed over passed by and never learned to conjugate verbs in the past perfect,
That you lost your will to live but kept on living
Failed geometry twice Never did Vegan, never did Vegas
Never did what they told you, Never told them what you did
Never got what you deserved Never deserved what you got
That you flossed twice a day Took your blood pressure meds regularly
Watched your sodium intake, The nightly news Once snoozed three Facebook friends
Never saw Elton John perform live Or viewed Lenin’s dead body.
In the end what does matter is the day when Mary’s DNA pressed the SELECT ALL option on the keyboard of her cerebellum
Then its index fingerprint on the DELETE KEY
Making one last withdrawal from Mary’s memory bank
Maybe it does matter How two days after that Mary’s husband Bernie sat at table With a half eaten English muffin and a Kodak Moment photo of their summer Vacation in the Costwolds decades ago
He reminded Mary of a pub where they dined on Sheep Street
And how the One who is able to restore the heavenly Manna of memory Will, in the end, make all things new
Even perhaps offering them both a platter of Bangers and Mash in Paradise
At that moment something lit up in the dark hallways of Mary’s hippocampus
And, after not speaking a complete phrase in sixteen months, suddenly blurted
“Bangers and Mash? I had almost forgotten how much I loathe that dish”
Mary never spoke again after that
At the church. during Mary’s brother’s solemn eulogy Bernie remembered his wife’s last words and broke out, in what some described unholy spasms of laughter
It was an awkward moment, to be sure
But Bernie didn’t care
In the end, he reasoned, maybe it doesn’t matter if there’s Bangers and Mash in Paradise
He’ll have Mary again
And, hopefully, maybe some decent Chinese takeout.
Author Byline:
Phil Ginsburg is a playwright/poet who lives in Colorado Springs, CO. His most recent theater piece is a virtual play entitled “Voices Beyond the Veil” that can be viewed on VillageArts.AnywhereSeat.com “Remembering Mary” is a work prompted by witnessing the effects of Alzheimer’s on several friends in his life.
Alzheimer’s Speaks Radio – Shifting dementia care from crisis to comfort around the world one episode at a time by raising all voices and delivering sounds news, not just sound bites since 2011.
Lori La Bey Can Help Your Organization Switch To Virtual Presentations For Staff Trainings, Family Support, Perspective Clients and Support Gatherings.
Accepting Dementia in Your Life
2 FREE SERVICE OFFERS BELOW
For a Complete List of Dementia Chats Videos – Click Here
We would love to here your thoughts and comments on this tip.
See What Others Have Say About Lori La Bey
I want to echo the thanks and appreciation of my colleagues… Your presentations were movingly authentic, fully engaging and wonderfully informative. Thank you for all that you are doing, and all that you’ve done for us!
Carla Koehl, Director of Community Relations – Artis Senior Living of Lexington
“Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.”
Pat Sylvia, Director of Education & Member Development LeadingAge WA
Lori La Bey Can Help Your Organization Switch To Virtual Presentations For Staff Trainings, Family Support, Perspective Clients and Support Gatherings.
Accepting Dementia in Your Life
2 FREE SERVICE OFFERS BELOW
For a Complete List of Dementia Chats Videos – Click Here
We would love to here your thoughts and comments on this tip.
See What Others Have Say About Lori La Bey
I want to echo the thanks and appreciation of my colleagues… Your presentations were movingly authentic, fully engaging and wonderfully informative. Thank you for all that you are doing, and all that you’ve done for us!
Carla Koehl, Director of Community Relations – Artis Senior Living of Lexington
“Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.”
Pat Sylvia, Director of Education & Member Development LeadingAge WA
Celebrate World’s Alzheimer’s Month – Share Your Story
Another heartfelt prose from John Sweeney one of our community members. John’s honesty will touch anyone who reads his words below. The heartache and love that holds us together when dementia hits someone we love.
My Heartbreaking Journey with Alzheimer’s – A Caregiver’s Lament
At my 80th birthday party, with the family gathering in fall of 2009,
Family noticed Virginia’s memory problem they couldn’t define,
Our daughters had made observations that they brought to my attention,
Concluded that Mom had memory issues, they were reticent to mention,
Things for which I was very unaware, because of my closeness to her,
I had missed many of the little indicators that would frequently occur,
But the family had seen the signs, to them they were in plain view,
After that I started to watch, sadly as I came to see them too,
Signs of forgetfulness seem to display more often than before,
Observations, painful to me, seem to be recurring more and more,
One painful example, she urgently called to my attention one day,
Her husband would be at the airport soon, we needed to be underway,
She needed to go to the bathroom while at a family affair,
“That young gal here is going to take me and show me where”,
It was a granddaughter that she loved so much in days of yore,
So very painfully sad that my love didn’t know her anymore,
Our daughters had come to visit with us at our apartment one day,
She called me aside whispering to me, sadly I heard her say,
“Who are those two ladies we were talking with out there?”
Fear shook through my frame as I became very much aware,
Slowly realizing I was losing the woman I had loved over 60 years,
This terrible disease, Alzheimer’s, was filling me with many fears,
It seemed now was time to explore with specialist in neurology,
At what point in this heartbreaking path now do we seem to be,
The Doctor set up an appointment with Neuro technicians for a brain scan,
From there he would have what was needed for a treatment plan,
With an aviator’s style head gear with contacts and wires everywhere,
It looked like a swim cap, the kind that Esther Williams used to wear,
The diagnosis stung when the description of the problem was read,
And I was shockingly informed with news that I had come to dread,
Alzheimer’s was the diagnosis, more news that hurt to the core,
For I had read many of the outcomes of this terrible disease before,
My mind raced, thoughts buzzed violently in my aged head,
As I contemplated what sorrow, pain and anxieties lay ahead,
As time passed, terrible anxieties burdened the love of my life,
It pained me greatly to see the stress in her, my beloved wife,
“We need to call my parents or grandmother so they hear from me!”
Her parents passed in the 1940s and her grandmother in 1953,
She would panic, searching, the “baby” was nowhere in sight,
A horrible feeling, sobbing kept awake in the middle of the night,
It soon became apparent, caring for her was beyond my ability,
Painfully searching, at this point what could the answer be,
After counsel with all the family, we all soon became aware,
The best solution for her well being was a room in Memory Care,
As I filled out the application, with my eyes filled with tears,
I realized we would be separated for the first time in 70 years,
She moved to memory care in the month of January 2019,
More evidence of cognitive regression was gradually seen,
One of the most painful experiences not noticed before,
That most of the time, she doesn’t know who I am anymore,
But with everything we have lost, and how our lives are stressed,
I remember fondly my 70 years with her, I have been blessed.
By John Sweeney – John lives in an Independent Living apartment in Cherrywood Pointe of Roseville, MN. His wife Virginia is in Memory Care in the same facility.
Alzheimer’s Speaks Radio – Shifting dementia care from crisis to comfort around the world one episode at a time by raising all voices and delivering sounds news, not just sound bites since 2011.
Lori La Bey Can Help Your Organization Switch To Virtual Presentations For Staff Trainings, Family Support, Perspective Clients and Support Gatherings.
Accepting Dementia in Your Life
2 FREE SERVICE OFFERS BELOW
For a Complete List of Dementia Chats Videos – Click Here
We would love to here your thoughts and comments on this tip.
See What Others Have Say About Lori La Bey
I want to echo the thanks and appreciation of my colleagues… Your presentations were movingly authentic, fully engaging and wonderfully informative. Thank you for all that you are doing, and all that you’ve done for us!
Carla Koehl, Director of Community Relations – Artis Senior Living of Lexington
“Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.”
Pat Sylvia, Director of Education & Member Development LeadingAge WA
“I want to thank Stephanie Turner for the beautiful poem she wrote about her Father who lived with dementia and her experience as she walked along side him. Poetry is such a powerful way to communicate. I hope you enjoy the depths of this poem as much as I did.”
– Lori La Bey, founder of Alzheimer’s Speaks
Alzheimer’s Speaks Radio – Shifting dementia care from crisis to comfort around the world one episode at a time by raising all voices and delivering sounds news, not just sound bites.
All shows on Alzheimer’s Speaks Radio are accessible to listen to at anytime to once they go live– Enjoy.
Those Living with Dementia Talk Openly About
Holiday Stress Triggers on Dementia Chats
Today Lori La Bey, founder of Alzheimer’s Speaks facilitates a conversation with the true experts on dementia, those living with a diagnosis. Our Topic is Holiday Stress Triggers for those Living with Dementia In this video you will hear those living with dementia speak articulately as they talk about holiday stress triggers, how they adapt to changing situations and environments as well as giving care partners ideas to make the holidays run smooth.
Book Your Next Event, Staff/Management or Family Training for 2020 & 2021 with Lori La Bey today! Consulting and Mentoring also Available.
See what Others have to say about Lori La Bey
I want to echo the thanks and appreciation of my colleagues… Your presentations were movingly authentic, fully engaging and wonderfully informative. Thank you for all that you are doing, and all that you’ve done for us!
Carla Koehl, Director of Community Relations – Artis Senior Living of Lexington
“Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.”
Pat Sylvia, Director of Education & Member Development LeadingAge WA
Start the New Year off on the Right Foor for a Family Dealing with Dementia!
Check out this book helping families deal with a dementia diagnosis.
You can get a special discount too!
The book is called Parental Dementia: A Guide through all the Difficult Questions by Keith Galas has spent more than 20 years helping families work through all of the questions that keep popping up through the dementia journey. The book even has some great worksheets to help keep your thoughts and needs organized.
“Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.”
Pat Sylvia, Director of Education & Member Development LeadingAge WA
Once again, one of our community members writes a beautiful poem which points out just how much our words matter. Thank you Bob Savage!
A note from Bob Savage who is living with dementia –
Inspiration came from a recent national conference workshop that I attended where staff from a dementia care facility described what they are doing to improve communication with the people living in their facility. They used “THEY” at least 15 times when referring to the people living in their facility during their presentation. Each time they used the word “THEY” my stomach would cringe.
THEY
By Bob Savage
Who
are these people who after one word we call them THEY
Did they have any choice as to why we call them THEY
Sometimes just one word (DEMENTIA) is why their
THEY
Is a person any different after Dementia Diagnosed as THEY
We still love, hate, think, enjoy, cry, be depressed
after THEY
We still love our family, friends, have enemies after THEY
We still love movies, parties, vacations, traveling after
THEY
We still have emotional upsets, anger, frustrations
after THEY
We do not like the loss of independence after THEY
We do not like the loss of social contact after THEY
We do not like people deciding and speaking for us
after THEY
We do not like being a burden to those we love after THEY
We like to continue to speak for ourselves after our THEY
We like to be involved in all our decisions after our THEY
We like to set up new social contacts others after our
THEY
We like to be accepted in our communities after our THEY
If you would like to submit your poetry about dementia and caregiving make sure to include: The title of the piece Your by-line including your name as the author of the piece and any background or contact information you would like to share. Contact us
“Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.”
Pat Sylvia, Director of Education & Member Development LeadingAge WA
Bright smiles once captured are now fleeting and few
Her indifference grows stronger, as her prayers fill the pew
Words once spoken fall silent from her lips
Her captor steals her thoughts and robs her of bliss
A world yet to travel with opportunities so vast
Is held hostage by her mind and are now dreams of the past
Loved ones are devoted and keep vigil for her care
Unable to arrest this disease that so dares
Dares to be bold, dares to be brash
And forces us to mourn our loss before the ash
We take solace in knowing that her fear will surrender
To a place deep inside, that she will no longer remember
Let’s find a cure….
My name is Sandy Cannon and I live in St. Louis, MO. My mother passed away in December, 2017, from dementia. I am a volunteer for AFTD (The Association for Frontotemporal Degeneration). I also work with the Alzheimer’s Association in St. Louis.
Thank you Sandy for sharing you poem with all of us!
Lori La Bey, Founder of Alzheimer’s Speaks
Looking for a Keynoter, Consultant or Trainer?
See what LeadingAge has to say about Lori La Bey
“Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.”
Pat Sylvia, Director of Education & Member Development LeadingAge Washington
Thank you so much for sharing your poem with us Ciaara.
I think everyone can feel your pain and your love through your words.
Lori La Bey, Founder of Alzheimer’s Speaks
Looking for a Keynoter, Consultant or Trainer?
See what LeadingAge has to say about Lori La Bey
“Feedback from the conference planning committee and our leadership team was extremely positive. Many attendees commented that she was one of the best speakers they had heard.”
Pat Sylvia, Director of Education & Member Development LeadingAge Washington
Alzheimer's Speaks believes working together and sharing knowledge is the best way to win the battle against this disease. Please explore the site and share your thoughts.
