The range of emotions that come with the experience of caring for a loved one with Alzheimer’s disease are deeply personal, but also in many ways universal. Sharing my own experiences through my book Searching for Cecy: Reflections on Alzheimer’s has built many healing connections in ways that i could have never imagined. I hope that by telling Cecy’s story, I have helped to create a space where other people affected by Alzheimer’s disease can share their own experiences and find comfort in the community that it creates. I would like to invite you to share a few words, a photograph, a poem, some art or whatever your creative outlet is, publicly on my website. If you send a piece of poetry or art to be displayed, your name will be entered into a drawing for a signed copy of Searching for Cecy. You may email me directly at firstname.lastname@example.org or upload your words or images to my Facebook page here: https://www.facebook.com/searchingforcecy. Be aware that anything shared to Facebook can be seen publicly.
Early morning dawn,My girl was on her way to being reborn.She smiled and greeted me, to let me know that all was well.Although I noticed her rubbing her hands.Which was was different for her norm.I left her sitting up so she could see the early morning rise.Next thing I know, we get a yell from her room.My girl was exiting , and she didn’t let me know.I think in a way she tried to spare me.But I, was there , and so many more.We made some phone calls,and was able to get loved ones on board.Judy was able to speak to her from California.She was able to express her loving words before passing.Unfortunately when Cecy passed I feel she hung up the phone, and went on to find her past family.In the excitement she forgot to say good bye.Cecy left in such a beautiful way.Know knowledge of her passing,no pain, no clue’Almost as if she snuck up on you and said , I’m going. And she did..Leaving a big void in our lifes.I miss my Cecy .And I know she misses us.She’s now up there living a productive life, looking out for all of us.She lived her final chapter of searching fo Cecy.~Kathy Johnson
I love and support the work of Angel’s Perch, the story of Jack, a successful architect living in Pittsburgh, who must make the trip to his tiny hometown when his grandmother Polly, who is suffering from Alzheimer’s, is found wandering outside her house one morning. Consider giving to support this wonderful project.
This is a 24″ x 18″ portrait called “A Great Small Moment.” It’s a painting of Judy Prescott and her mother Cecy (done with permission, from a photo found on facebook.com/searchingforcecy). Not long ago, I purchased a book called “Searching For Cecy: Reflections on Alzheimer’s” by Judy Prescott. I could so relate to much of what Judy expressed in her moving poems about her mother’s journey through Alzheimer’s. The fact that she used her creativity to find peace around it all, struck a chord with me. My mother and father’s stories weren’t Alzheimer’s — theirs was cancer — but loss is loss, love is love, and creativity is a wonderful way to work with and through it.
Do you have a friend or loved one with Alzheimer’s who could use a special day out?
Several art museums around the US now offer programs specifically designed for people with dementia. Many people with Alzheimer’s have difficulty enjoying everyday activities we take for granted, such as reading or watching films. However, a painting or sculpture doesn’t change. It can be viewed at one’s own pace. Viewing art, friends and family members can enjoy an activity together in a beautiful, peaceful setting.
At Carnegie Museum of Art in Pittsburgh, I have witnessed the power of art experiences for people who have dementia. Looking at art stimulates conversation and memories, and promotes a happier mood that lasts beyond the art museum experience. While not claiming any medical miracles, I have seen very quiet people with Alzheimer’s come alive and start talking with real enthusiasm about artworks and their personal experiences. Family members have been amazed. It is a wonderful way to spend special time together with inspiring works of art.
The Museum of Modern Art (MoMA) in New York City has a great website explaining their groundbreaking program “Meet Me”http://www.moma.org/meetme/index. I hope you will check out art museums in your area that may provide similar programs.
- Leslie Nutting at Leslie G. Nutting Fine Arthttp://leslienuttingfineart.com/
A Song for Mom
by Lara Jill Miller
I wonder what you’re thinking -
What you see when you close your eyes
No longer do you see your childhood
No longer do you see mine.
Do you remember our lives so close?
Do you know how far we are apart?
Miles and states may separate us,
But it’s the mind that breaks my heart.
Memories are to cherish
It’s not fair that they slip away.
Are you sad, mad, confused -
Do you know how I long for you every day?
How do you manage
When you’re supposed to learn from the past?
I try to imagine a world
Lost, alone, not knowing what to ask.
My spirits are broken
My hopes and dreams seem to die –
I can’t grasp a world without you
It’s a race against time.
I see you standing right next to me
And sometimes I hold back
For it’s the future that I’m scared of
When I know you know not of my past.
I have such sweet memories
I long for childhood every day –
“Oh, do you remember, honey?”
Are words I long to hear you say.
I don’t want to be selfish
But I wanted to share my life…
I’m not finished growing up
I needed you for more time.
A song for mom
Spirits brighten in tune –
I’m sure there’s a lesson to be learned
Are you scared? Are you lonesome?
Do you know what’s going through…
Our minds when we look so sad -
Have you lost that too?
I know you’re still there
Your love forever true
A bond of mother and child
Though hazy and dim in you.
If only you knew I was writing this for you –
Your heart would break in two.
For as much as you cherished me
I truly cherish you.
I was proud when Dad chose me over my brothers, or anyone else, to be his primary caregiver. This was huge; caring for him while he was dying held the promise of breathing new life into us. But pinning hope and expectation on anything is never a good idea. I was soon to realize he hadn’t chosen me for any other reason than he thought caregiving was women’s work. I was the daughter in the family so it should be me — simple as that. This was starting to feel like embarking on a road trip without gas or directions — and getting a flat tire before ever leaving the driveway. I took out the emotional jack and spare, and thought to myself, “There’s just no way this is going to be easy.” He and I hadn’t had much practice working as a team — especially for roles as emotionally charged and complexly choreographed as dying and caregiving.
Written by Kathy Johnson, one of Cecy’s caregivers….a very important perspective.
My silly little friend,You fear I might hurt you.Yet I care for you, day by day.I’ve grown to love you.I mean you know harm.Yet I feel your fear.I gently bring the spoon to your mouth.You pull back, as if I mean you harm.Your eyes tighten, your face scrunches.You look as if I’m going to throw a pie in your face.The next mouthful, you give a blow as if to blow it away.Do you even understand you need nourishment?Do you understand I mean you know harm?Finally a taste of food.You roll it around with your tongue, yet not swallowing.A small playground in your mouth.You play with your dinner tray, mixing and matching.As if you were playing with a chemistry set.I think to myself, please swallow.Enjoy this meal tonight my friend.I so often encourage you to eat and drink.Yet things are a wonder to my silly little friend.She plays with her new activity blanket.And watches her family TV.At times I see her remembering.Of her family and friends she has left behind.Her family TV will sometimes bring a smile or encourage her to talk a few words.The sparks are few but still are there.I feel so sad that the family can’t be there to see that moment.Being on a dementia unite you never know when the sparks will fly.It is so important to let the family know that they are remembered.And they are still loved.Usually after being well rested or after something has happened.Family is not forgotten.They do still remember and they do still care.You may not be there at that moment and time when you are remembered.But your in there heart and soul.Your in there mind still living in time.Don’t ever feel you are forgotten.And don’t ever give up, you are remembered.Staff members may take on being mother, father, child, friend.We become there family, which is comforting to both.They may not mention your name when you want.There timing is off.But reaching out, holding a hand, stroking there forehead.Watch for the suttle change.The ease in there face,the calming in there respirations.They relate on there time clock.These people still are capable of loving.Still capable of showing love.You may need to look deeper.What your use to as far as a hug.Look for other clues.Such as standing beside you, singling you out. Fixing your clothes.Bringing treasures to you, to make you smile.The love is there.Never forget or give up on our Alzheimers patience.They remember in there own time and frame.So please continue to love.It maybe a little harder, but who said life was easy.Spend a little more time.Learn to get into there world.Most of all don’t ever feel you are forgotten.Cause you may get that special moment in time.Where they look at you and say hi, I love you, where have you been?And for that moment in time, it will stay with you for ever.That visit or phone call you will never regret.Never forget your Alzheimers, and if you do, your loss.It’s a moment you could be exsperiencing.In loving memory of my mom.
“Sketch contributed by my brother, Tom Prescott, artist from Searching For Cecy.”
Here is a beautiful example of how artistic expression can help others dealing with this illness.
Please support this wonderful project.
D-Generation: An Exaltation of Larks will be a full-length theater piece based on stories written by groups of people with late-stage dementia. It will be performed by a cast of puppets, the residents of a care-facility. It will contain an original score and original video segments that take us into the world of people who live with dementia.
The collected stories, which are associative and non-linear, were gathered by Sandglass Theater’s performers during 20 visits to care facilities, during which circles of people with dementia were guided through a collective story–making process. These stories reveal a humor, and playfulness, as well as the darker side of the disease, and they stand on their own as dramatic material from a remarkable source. The stories, combined with the compelling process of writing them, form the inspiration for D-Generation.
The piece explores the rich creative potential and ability to communicate that exists even in people with late-stage dementia. Their words and images, their creative imaginations, yield work that is poetic, humorous, and quite mysterious. From these stories, Sandglass Theater forms scenes of the inner life of the characters, and creates a piece that reflects both the stigma and the emergence, the despair and the joy, that is equally present and possible, in both the person with dementia and in their caregivers and family members.
The Blue Darter
From behind the big desk
across the expanse of office
in one fluid motion,
he stopped just short of embracing her.
She froze in the doorway
caught by his energy,
surprised by his undisguised intent.
(They’d just met.)
When every day they look
for the keys he used an hour ago
(he searches the same pockets,
drawers again and again),
she fuels his anxiety with her impatience
shuts her heart’s eye to the man
who was so famously certain.
She noticed his long hands,
one always caressing a cigarette.
Often, he anchored the other on chair-backs
sailed over and sat down,
crumpling cellophane from the pack,
throwing it on top of the bookcase
for the cat he taught to fetch.
When her eyes sweep over him
on the couch where he sits
re-reading the New York Times,
the TV turned to what comes next,
she tells herself to stop, touch
his hand, his cheek. She doesn’t.
Flashes of dark hair, lean body
striding through his newsrooms,
diving into the pool at dusk,
crushing her against him
in taxis, on hotel beds
in Beverly Hills, London, New York.
When he inquires each night
which side of the bed she will sleep on,
the side I always sleep on, she wants to scream.
But she answers calmly, continues to floss.
tries to forget only she remembers their shared bed.
All momentum, he strode
through careers, cities.
At the Miami News,
he was nicknamed Blue Darter,
a rare swift-moving hawk
whose endangered habitat
made front-page headlines.
Thirty-five years later,
his wingspan is a shadow,
his mind a collection of odds and ends.
Every morning, the third time he asks
if he should feed the dog, she yells at him.
For years she has felt
she was playing a part
in someone else’s life,
following his lead,
on the edge of the spotlight
It seems she is the one thing
he has not forgotten,
but his faithfulness fails to move her.
All edge and edgy, shut down,
she was not born to be a lodestar.
Sometimes when he sleeps
she whispers to him
Mainstay, as you drift away,
I gulp bitterness
thrashing toward compassion.
by Keven Bellows
DR. A. L. Lieber
(Perspectives in Biology and Medicine . Summer 1972)
A sporadic gasp, a muted cry
Heralds the inception of new life
Imbued with deific innocence
And trust, instinctive and inviolate
Which shouts to the world with silent eloquence
Each day is a new beginning.
Life starts with a flourish
Marches boldly forth
Then totters and falls
To become a new beginning
Through those who seek knowledge with which to secure it…
HIC EST UBI MORS GAUDET SUCCURRERE VITAE.
My first day meeting Cecy I thought to myself,
my goodness she is tall.
And as I stood beside her, I felt very small.
She walked with long strides,
I could barely keep up.
But I gave it a good try.
Her stride was to much and her reach was to wide.
She was always one step ahead and one reach to far.
I could not keep up with my new busy friend.
I soon needed a chair,
I called her the long arm of the law.
Her way or no way.
The Cecy law
Walking thru out the unit with her cute little hats
and her curls under that.
I learned very quickly not to put anything down.
Cause shortly after Cecy would pass
I would be caught with a frown.
It was almost a game.
Cecy would pass by and things would be gone, in a flash of an eye.
I guess she felt she was on a mission.
She was working as well.
I would chase her down the hall to retrieve my belongings
Cecy would look with amazement and give me a smile.
Then off she would go to another mission
My busy little girl
Mary Prescott and I.
I was astonished the first time I stumbled upon –literally– Officer’s Row on Sandy Hook. Lost in a maze of scrub pine and rhododendrun, I burst out onto an overgrown parade ground and there they were in front of me: a line of abandoned ocher houses dead silent in the sun. It was a haunting image. “I have to paint this one day,” I said to myself. This past Autumn I finally did.And I suppose at times we are not unlike these house out on that point, when circumstances balloon like a blue-black tempest and our foundations turn to sand– we stand, alone yet together, defiant, stoic, beautiful…
~Phil Crossman of Vinalhaven, Maine. http://tidewatermotel.com/
“My best friend has been traveling a painful road with her mom’s Alzheimer’s. She has experienced so much deep loss in her life. But somehow along the way, the pain and separation has become a catalyst for her spirit. Bit by bit she has found the beauty that rises out of the ashes.”
Cecy in a Wheelchair with Eliza
Eliza, Age 5
A CAREGIVERS REWARD
To see your charge restore her gait
View memory improvement of your mate
No bladder control problems to spoil your night
No soiled sheet when you turn on the light
Some of the rewards, but only as few
Now my attitude is better too
Hydrocephalis, fluid causing pressure on the brain
Better quality of life now, after the drain
Some other Ailments, but what can you do ?
It’s aging, you have them too.
We are both in our eighties,
I am eighty-seven, she is eighty-three.
Married for sixty-one years and happy to be.
Leeza’s Place Circle of Care, lucky to find.
Energizing our body, spirit and mind.
Take the oxygen first, they tell us to do
All of us caregivers should remember it to.
Caregiving is rewarding, without a regret.
Hard to tell, just the feeling you get.