Community

A Collection of Work

By Neil Collins – “I was diagnosed with Alzheimer’s about 9 years ago. Poetry is apparently available to me forever. This poetry took me 3 hours to write at the public library.”

 

Love, life, companionship, happiness, joy, faith, belonging

Hopefully,
Love finds Life
Companionship finds Happiness
Joy finds its Faith
Belonging Each to Each Other.

 

My love’s Creation

What God created you with a roar?
Greater than all orchestras
Greater than all sounds of spring —
The wind in trees, rushing water, waves, thunder.
How did he and she together create such newness?

How did I find you?
How was I the one to find you?
How did you see me?

Will we ever have enough of each other?
Will there be enough time?
How long is Infinity?
Thus, a hope for Infinity’s purpose.

I expect we may need an eternity.
We will need an eternity. Yes.
I believe in eternity.

Glad to have met you my dear Barbara.

 

Thoughts on Alzheimer’s:

Basically, I often cannot remember
Whatever has just happened.
It can sadden me.
I get used to it.
Breathe in, breath out,
Repeat,
Continue.
Enjoy the breathing, seeing, hearing.
Enjoy your heart’s beat.
You/we made it to being alive, to living.
Enjoy our todays. Our moments. Dear self.
Remember…

Poetry sometimes just sits down,
and waits outside the door.
Considering the mood
For itself…
For the day.
I ask for help.
“Help yourself” answers today’s grumpy whispery poetry.

… Some friend.

Loss

By Sheila Neylon, (caregiver to her husband Tom – Tom Neylon taught secondary English for 41 years. He played piano in several bands. He had an encyclopedic knowledge of American Roots music. He was an indefatigable collector of LPs and CDs. Alzheimer’s stole everything from Tom and stole him from us. I wrote some poems when he was in hospice care as a kind of care for myself. We were married for 55 years. He was officially diagnosed in 2015 and died May 2, 2023.

Loss  

I lost him twice
First his illness ravaged his mind
All the things which form a life
Abandoned him
Slowly, slowly
Reflection, memory, humor, love.
And then the illness ravaged his body
I could not help him —
In the end I lost
My husband and my best friend 

 

La Perte  

Je l’ai perdu deux fois—
Première la maladie a ravagé son esprit
Toutes les choses qui font une vie
l’a abandonné,
lentement, lentement.
réflexion, mémoire, humour, amour E
t puis la maladie a ravagé son corps
moi, je n’ai pas pu l’aider—
À la fin j’ai perdu
mon mari et mon meilleur ami 

 

Sorting Teas

By Ellen Zhang, MDThis poem is inspired by my time in the Geriatrics Connection Clinic where I heard stories of elderly people who were both patients and caregivers. One of the participants shared a story that blossomed into the poem that I have shared here. 

Last Thursday, you rearranged
teabags in the nursing home.
Neat rows of blacks, greens, florals,
previously skewed in the cabinet
from other hurried hands shuffling them
searching for the right taste,
those other hands rushing
to wheel residents down the hall
or receive phone calls of families
wanting to speak to loved ones.
Your hands are delicate,
shriveling like mossy seaweed,
blue veins are running tributaries,
protruding, pulsating.
One of the staff members
told you to stop sorting
teabags, go back to your room,
read a magazine, or take a nap.
You refused, staying there,
silently organizing and
reorganizing. The scent of mint
and lemons lingers
in the air. You can barely
remember what day it is or how
to fold your own clothes,
yet you know that the jasmine
and lavender teas belong
next to each other.
Who are we to say to stop
sorting teas? After all,
part of you must know
that this is your kitchen,
this is your home.
I sit and ask you
to make me a cup of tea
and that moment lingers
even now as the happiest
I have seen you.

 

Dialogs with Louise

Over the final two years of his wife’s life, David Weinberg recorded spontaneous comments and dialogs. Some of these comments were said while she was in a dream-like state, sometimes likened to dreaming while awake. Others were in response to hallucinations. Still others were in the form of what she called “ditties”, which meant she liked the sound of them, and would repeat them many times. Occasionally, she would say something that was almost surreal, but others were drawn from her vast store of wisdom.

 

7/7/19
L: Marlena called. The robots are making Pesach dinner.

 

8/14/19
L: What day is tomorrow?
D: Monday
L: Well, that seems arbitrary!
D: If tomorrow is Monday, then today is Sunday.
L: Like I said – it’s arbitrary!

12/28/19
L: How can you make something reappear once it disappears?
D: Why do you ask?
L: Just popped into my head.

1/31/20
L: Are you thinking about high school?
D: Why?
L: You look pensive.

 

3/17/20
L: There’s a Harvey sea turtle
D: Where?
L: Over there.
D: What’s the Harvey part?
L: I just like the word “Harvey”

4/30/20
L: What does a ten year-old reasonable meatball sound like?
D: What do you mean?
L: Figure it out.

6/5/20
L: I see everything in the world in this bowl of soup.

7/18/20
L: I had a dream last night that I had become demented.

 

8/8/20
L: Look in my ear. See anyone you know?

 

8/24/20
L: How can it be Monday?- It has to be Friday.
D: Why?
L: Because I think it’s Friday.

L: I was so shocked to see you in my dream. How did you know where I was?

 

9/20/20
L: I think I know how to extricate myself.
D: From what?
L: From this place.

 

9/21/20
L: (Looking at our piano) Look – the piano’s dancing!

10/4/20
L: Did anyone ever come to look at that room with a big padlock on it, across from the stairs?

L: Did I make this? (looking at dinner plate)

 

2/16/21 (at home)
L: When are we leaving?
D: We don’t have to  – we can stay.
L: But we’re paying by the night

3/11/21(One of David’s favorite comments by Louise)
L: I’m drawing to learn, not learning to draw.

3/19/21
L: I think it was a little pushy for Karen (caregiver) to have all of us sleep in the same bed together.

3/26/21
L: (trying to send email messages to her mother)

 

5/7/21
L: If I lived in a box, would you still love me, would you come visit me?

5/18/21 (fifth hospital day)
L: Lazy, crazy lazy crazy days of summer

L: How do we know what group we’re in?

L: What did it say, the beautiful message?

L: Do I have serendipity?

L: I want to dig.

6/20/21
L: I truly believe I will not know what I need to know by that date.

Louise died several days later, on July 31, 2021.

July 2023

What is the difference between normal forgetting and dementia?
It's normal to forget things once in a while as we age, but serious memory problems make it hard to do everyday things like driving, using the phone, and finding your way home.
Signs that it might be time to talk to a doctor include:
 - Asking the same questions over and over again
 - Getting lost in places a person knows well
 - Having trouble following recipes or directions
 - Becoming more confused about time, people, and places
 - Not taking care of oneself —eating poorly, not bathing, or behaving unsafely

August 2023

Why do you use the phrase “your person” to refer to a person with dementia?

The term "your person" is short for "your person living with dementia or other neurologic condition".  We shorten it to "your person" for readability.  We have recieved feedback from caregivers that using a term such as "loved one" does not land well when you are in the thick of managing difficult behaviors and changes.  Using a term such as "family member" is not broad enough to capture people who are non-family member caregivers.  Likewise, other terms such as, "spouse", "sibling", or "parent", leave out whole segments of the caregiving population.  Therefore, "your person" is a neutral, brief, and universal way to refer to the person living with dementia. 

Poetry

Life's Puzzle Pieces By Tom Brodnicki

Seeking to be whole,
Hoping each piece fits,
Fingers picking me up
Only to put me down,
Sometimes confused
On and on…bit by bit.

Once I was whole
Or so I believed
Until Lewy arrived
Picking my brain apart
Piece by piece – first my keys
Why, oh why is it me?

Is this how it ends
Appearing strong on the edge
Surrounded and secure
While lost in the middle
Pieces close together
Yet disjointed and unsure

Shapes of many types
Colors of the rainbow
Once a work of art
Together as one
Until a shove, a shift
Breaks it all apart

So, what happens now
Pieces scattered everywhere
Some lost, some to be found
Life’s puzzle changed –
Never to be the same
Yet hope is eternal – never bound

Pick up the pieces – seeking the best
Pick the brightest shapes and colors
Discard the rest
Create new art – revive your heart
Piece by beautiful puzzle piece
Give your life a fresh start!

 

Artist Statement:
With gratitude to the CBMM team for their continual search to better mental health for those struggling across a multitude of issues, blending the Arts and Sciences is a marvelous offering. In this vein the old saying “you’re a poet and don’t know it” came to life for me with an invitation to a virtual “poetry slam” that included encouragement to provide a poem of importance or an original work.  While I recognize poetry as a valuable art form I never considered myself a poet.  Taking the invitation as a challenge and knowing I might get “slammed” or emphatically told “you are not a poet and should know it”, I decided to give it a try.
 
I began with a time of reflection in living with Lewy Body Dementia the past 6 years.  Knowing that many pieces of my life have and will continue to slowly slip away from the professional, personable, and engaging spirit I am generally known for, more questions than answers rumbled though my mind.  Not knowing where it would go, suddenly I began writing poetic verse.  While Lewy Body slows my ability to recall, connect words and often make my point verbally, writing remains a valued gift. Initially trying to abide by the rules of poetry learned long ago in school, soon I threw the rules to the wind and just wrote.
 
Life’s Puzzle Pieces emerged from a reflection and discovery that beyond the science and excellent care provided by the medical professionals, appreciating and engaging in the arts provide a new weapon in the battle to keep Lewy Body Dementia in its place.  While still a challenge, writing the poem reminded me that there are far more puzzle pieces in place than those that have slipped away.  Writing and sharing this poem has been a very valuable experience in many ways!  Thank you CBMM.
Slow Theft By Nancy Cherico (Family Caregiver)

A theft so subtle at first
you don’t know
you are being robbed,
like having your pocket picked.

You notice
nothing missing,
nothing out of place
but the thief
has already moved in.

He starts
by stealing words,
stashing
them out of sight. Then
he siphons off your memory
drop by drop.

Over time
you begin to protest,
to grieve the losses. To beat
and blame yourself.

Not content with burgling
the meanings of things,
the thief makes a shambles
of what you see and hear.

He steals the blueprints for living.
How to brush your teeth.
Get dressed.
Later, how to walk.
Finally, how to swallow.

The scans show what
has shriveled, how little the thief
has left. By then the grieving
has begun in earnest, not by you

because all you know now
is fear or comfort,

but by those who love you
and have witnessed the slow
inexorable
theft of your mind and life.

Sorting Teas By Ellen Zhang, MD

Last Thursday, you rearranged
teabags in the nursing home.
Neat rows of blacks, greens, florals,
previously skewed in the cabinet
from other hurried hands shuffling them
searching for the right taste,
those other hands rushing
to wheel residents down the hall
or receive phone calls of families
wanting to speak to loved ones.
Your hands are delicate,
shriveling like mossy seaweed,
blue veins are running tributaries,
protruding, pulsating.
One of the staff members
told you to stop sorting
teabags, go back to your room,
read a magazine, or take a nap.
You refused, staying there,
silently organizing and
reorganizing. The scent of mint
and lemons lingers
in the air. You can barely
remember what day it is or how
to fold your own clothes,
yet you know that the jasmine
and lavender teas belong
next to each other.
Who are we to say to stop
sorting teas? After all,
part of you must know
that this is your kitchen,
this is your home.
I sit and ask you
to make me a cup of tea
and that moment lingers
even now as the happiest
I have seen you.

Loss By Sheila Neylon

Loss  

I lost him twice
First his illness ravaged his mind
All the things which form a life
Abandoned him
Slowly, slowly
Reflection, memory, humor, love.
And then the illness ravaged his body
I could not help him —
In the end I lost
My husband and my best friend 

 

La Perte  

Je l’ai perdu deux fois—
Première la maladie a ravagé son esprit
Toutes les choses qui font une vie
l’a abandonné,
lentement, lentement.
réflexion, mémoire, humour, amour E
t puis la maladie a ravagé son corps
moi, je n’ai pas pu l’aider—
À la fin j’ai perdu
mon mari et mon meilleur ami 

A Collection of Work By Neil Collins

Love, life, companionship, happiness, joy, faith, belonging

Hopefully,
Love finds Life
Companionship finds Happiness
Joy finds its Faith
Belonging Each to Each Other.

 

My love’s Creation

What God created you with a roar?
Greater than all orchestras
Greater than all sounds of spring —
The wind in trees, rushing water, waves, thunder.
How did he and she together create such newness?

How did I find you?
How was I the one to find you?
How did you see me?

Will we ever have enough of each other?
Will there be enough time?
How long is Infinity?
Thus, a hope for Infinity’s purpose.

I expect we may need an eternity.
We will need an eternity. Yes.
I believe in eternity.

Glad to have met you my dear Barbara.

 

Thoughts on Alzheimer’s:

Basically, I often cannot remember
Whatever has just happened.
It can sadden me.
I get used to it.
Breathe in, breath out,
Repeat,
Continue.
Enjoy the breathing, seeing, hearing.
Enjoy your heart’s beat.
You/we made it to being alive, to living.
Enjoy our todays. Our moments. Dear self.
Remember…

Poetry sometimes just sits down,
and waits outside the door.
Considering the mood
For itself…
For the day.
I ask for help.
“Help yourself” answers today’s grumpy whispery poetry.

… Some friend.