Poetry and Alzheimer's

REVIEW: Michael's collection of poetry shares every day life experiences, as well as a catastrophic experience; namely loving and living with someone who has been diagnosed with Young Onset Alzheimer's Disease. His poetry is easy to read, understand, and feel. His style is prose-like and rarely uses formal types of poetry or rhyme. Reading his poetry is like sharing a conversation and a cup of coffee with a good friend!

http://www.barnesandnoble.com/s/horvich?_requestid=559596

Last Breath

Last Breath
By: Kate Swaffer

Remember when the time comes
To breath in very deep
Take my very last breath
And make it your own

This poem was written by my blogger friend from Australia in her book of poetry Love, Life, Loss: A Roller-Coaster of Poetry. Of all her wonderful poetry, this poem moved me the most when I read it several months before Gregory died. 

The day before he died, after three days of his being in a non-responsive state, I kissed him three times on his open mouth and on the third kiss, he kissed me back.

A short while after he died the next day at 12:04 on Sunday, October 4, 2015, I sat with his beautiful body and told him everything I needed to say. I held his still warm hand. Before leaving, I kissed his open, cold mouth and I breathed as deeply as I could. 

He smelled of the sweet Gregory I have loved for forty years and will love for the rest of my life. He has been, is, and will always be part of me in so many ways.

His ashes sit in his Grandma Carrie's sewing box which lives on my bedroom bookcase and his breath lives within me.

A Life So Quickly

What is a life?
A moment in the day?
A memory to think of?
The passage of time?

Why does it go so quickly?
Where does it go in the end?

What is a life?
Living to the fullest.
Family and Friends.
Lovers and loved ones.

Why does it go so quickly?
Where does it go in the end?

What is a life?
A photograph, a video.
A love letter with flowers.
A special gift to cherish.

Why does it go so quickly?
Where does it go in the end?

What is a life?
A kiss hello and one goodbye.
That special smile and wink.
A hug that doesn't stop.

Why does it go so quickly?
Where does it go in the end?

Why does it go so quickly?
Slow down! Don't miss it!
Where does it go in the end?
You carry it in your heart.

Forever

Gregory died on October 4 which was a Sunday. Today is the second week anniversary of his passing. I was surprised when I tried to figure out how long ago he moved on. The thinking motivated this poem.

Gregory's Passing

Gregory died on October 4, 2015

Which is only two weeks ago

An eternity of Sundays.

It seems like forever

It seems like yesterday

It seems like not yet.

Forty years together

Just a day has passed 

A lifetime continues.

How long is a moment?

How long is a lifetime?

How long is love?

Forever and a day

Or a moment 

Or a lifetime continuing.

Love and Letting Go

Our friend Kate Swaffer dedicated a poem to Gregory and me. It was my favorite one from her book of poetry which I was honored to receive in the mail (with postage marks from Australia. )

 Click here to see the poem on Kate's Blog

Kate Swaffer

This morning as Gregory continues putting together his "escape plan" (always room for humor,) I was going through my mail and following my list of blogs when I came across this from friend Kate Swaffer whose name you have seen before in my posts:

"Sit With Me A While Longer" Michael A. Horvich

A Trip to The Barber

Gregory lifted his arm slowly
And with finger stiffly aimed,
He pointed at my beard.

"Yes," I replied as if I
Knew what he would say,
"I had my beard trimmed."

"I also got my hair cut.
See how short it is!"
I leaned in towards him.

He lifted his arm slowly
And navigating thoughtfully,
He ruffled the hair on my head.

This unexpected interaction
Between us spontaneously,
Rekindled the human connection.

I loved the feel of his tender touch.
He loved the feel of touching me.
Another Monumental Momentary Miracle!

Memories
By Michael A. Horvich

Memories of earlier times arrive
No longer to be there for me, or us
So I sit at computer and compose
And console self as best I can.

I sit on the summer warmed balcony
The grass and trees growing lush
On the roof deck garden below us
As this poem begins to blur.

My coffee steams in the hot sun
My toast: rye with raspberry jam
The birds chirp and tweet and twittle
As the cold tears wet my cheeks.

"May I come out and join you?" he asks
With an up turned questioning voice
"But off course you may and welcome!"
As I reply with sorrow's memory.

We talk about flowers below us growing
About the sun and clouds above us moving
We sit together quietly holding hands
As my memory is unable to quiet itself.

I stick my expecting bare feet into
His empty, sun warmed worn sandals
He suns his legs stretched over mine
And I wonder with whom can I cry?

Deep gasp after gasp after breath
Tears continuing to flood and fill
A sadness, an emptiness, a grief
So deep as to drown without hope.

These Leavings

(Mark and Colleen visited this weekend. It is early, raining and they have just left. I find myself crying, sobbing, howling, rocking as my kitty shares concerned consoling rubs on my legs. The computer is scheduled to turn on at 8:00 am. I sit down in front of it and this poem arrives, by itself as they often do, with little help from me. Having written it, I can now return to bed, perhaps to sleep for a few more hours and then off to visit Gregory.)

These Leavings

You inhabit our home
With your life and love
You, the only ones
Who really know
Really Understand.

And then comes time
For you to leave
Returning to your home
So I cry and grieve
Yet another leaving.

And my apartment
Is once again filled
To overflowing
With emptiness
Alone.

The reality of it
Needing to be cried
But rarely allowed
Announces and arrives
In torrents.

"I knooooooow"
"I knooooooow"
"I knooooooow"
Pours out with tears
But I don't really.

Afraid to loose myself
In the river, the stream
Unable to breath
Afraid of getting lost in
"I knooooooow."

And then another day
Of getting through life
Finding joy here and there
A laugh or two or three
Always on shoulders of sorrow.

An Exchange With An Important Friend

Good commentary on the drugs Michael.  I think drugs may be appropriate based on the patient's situation/behaviors.  Sounds like you've come to that conclusion too.

Saw the article in Orange County Register. Wish I could see the video.  Is it available anywhere?

Hope you are doing OK.  If you wrote that poem in this latest message, it is so honest and on target.  I still remember so much.  You will never lose the good memories--:)

Love and hugs,

BD

Thanks Barbara as always for your feedback. 

Risperdal helped Gregory and now that he is getting a little too “agida” again, I think a small increase is the right decision. Actually have a “Care Conference” today with Social Worker and Head Nurse. 

Video will be released publicly but not for a while as it is being submitted to various film festivals and they all have “not previously shown or publicly released” clauses. You will be among the first to know when it is available. 

I am doing OK but as you know the hole that Dementia/Alzheimer’s tears in your chest never fully heals. 

I haven’t been writing much poetry because things with Gregory have been fairly calm. 

While the memories will always be there and will comfort me, I find that I still need to keep them under control so as not to overwhelm myself with despair. The poem slipped out last night during “one of those times.”

Michael

How It Is Now

The key in the door turns
The memories are silent
Hiding least they evoke
Difficult memories.

Over the threshold one steps
Into the waiting abyss
The house filled to overflowing
With every last encounter.

Into the front hall closet
Onto the waiting hanger
You place your jacket gingerly
With others no longer owned.

Walking past the lonely bedroom
Into the front of the condo
Shelved and collected and scattered
With mementos, memorabilia, reminders.

Two grocery bags filled
With individual items
Then emptied into the cabinets
And refrigerator ... for one.

Dinner from the microwave
Emptied on a tray and taken
Into the TV room TV table
For flickering eating friendships.

The cats, two of them purring
Bringing life and joy to you
Without expectations to be filled
Joy on the shoulders of sorrow.

Then bedtime with the wrinkled sheets
Only your scent and your pillows
And the memories no longer silent
Keeping the night long and loving.

Wandering or Walking?

Check out Kate Swaffer's poem on "Walking" vs "Wandering." Very expressive! 

http://kateswaffer.com/2015/05/21/behaviour-management-or-staff-education/

My reply to her was:

Kate, you did it again. 

First, you make it so obvious that words and language can influence how we think, feel, act ... against and for others with Alzheimer's and other dementia related illnesses. 

Second, poetry is a wonderful way to express and deal with one's feelings. I have self-published two volumes of poetry many of which are informed by Gregory and my journey through Alzheimer's. When Gregory and I could no longer share language, I turned to my computer to help me process my experiences, frustrations, and emotions which led to beginning my blog and my career as a Poet! I find that often my processing expresses itself through poetry. Other people have said, and I repeat, the poetry writes me not me it!

I have always seen the residents on Gregory's floor and also Gregory as people first and Alzheimer's just as the situation we are in. I have always been careful with my "language" when discussing things about Alzheimer's. But I am getting better at it. I love promoting silly little things like calling a bib a "cloth napkin" and diapers "paper pants." 

I have been able to live in their world as well as my own. I have been able to selectively "lie" about "B's" daughter having called to say she loves her. Such joy she felt at such little costs to me! 

I have been able to participate in a business meeting to discuss with "J" what we should do about the furniture delivery. Such a sense or purpose for him and what he used to and thinks he still does.

When "S," sitting by the elevator, asks me when her son will arrive, I tell her I am not sure but I see if I can find out.

But you have brightened my outlook on seeing the entire disease in a new way and how to treat and care for my fellow human beings according to how we talk about dementia and the people affected by it (both those with dementia and those who love and care for them.)

I have begun informing, educating, correcting, etc people with whom I come into contact when their language seems inappropriate. I do so gently and with love. Tonight at dinner, the sister of "M" shared with me that "M" has been aggressive today. I asked, "Is it aggressive or energetic?" The sister liked that and repeated, "Yes, energetic."

If I may, this is my BLOG: http://mhorvichcares.blogspot.com

Also, if I may, this is where my poetry is available: http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=michael+horvich 

(P.S. If you buy a new new one, the profits go to Gregory's Lieberman Center Alzheimer's Special Care unit. The used ones available at a cheaper price are owned by others and their profits are not shared.)

Batia's Poem

This poem was written many, many years ago, long before the onset of her dementia, by Batia who is one of Gregory's table mates. Batia and her daughters have become part of my Lieberman Family.

Batia’s Poem

Now that I have sprained my ankle

I’m force to review where I’m going.

So when I go blind

I’ll see my heart.

Then I’ll go deaf

to hear my soul.

Turn dumb

To state the truth.

That leaves madness

To contemplate reality.

Dramatic measures to face the world.

Boink Love

Gregory sitting in his wheelchair
Me sitting next to him on a stool
He leans in towards me
I lean in towards him
He leans in closer to me
I lean in closer yet to him
Our foreheads touch
He usually says, "Boink."
This time he said, "I love you!"
Without a prompt from me
My heart soared as high as heavens
Joy carried beautifully, fragilely
on the broad shoulders of grief.

A Daughter's Prayer to God

A moving poem posted by a fellow caregiver on her Alzheimer's Blog (opens in a new window:)

http://myalzheimersstory.com/2014/05/14/a-daughters-prayer-to-god/#more-374

Crying Myself Silently

I have learned to cry myself silently
Without making a silly squeak
No body shakes or loud noises
But tears still as large as sobs

A song, an idea, a line in a play
Bring on a wave of emotions
I have learned to cry myself silently
But tears still as large as the ocean.

A thought, a memory, a photograph
Bring on an attack of emotions
I have learned to cry myself silently
But tears still as large as wars

Over time, I have learned to say
"Thank you emotions
"Thank you tears
"Just not right now

Insight or Intuition? Real or Imagined? PART I

Yesterday at Lieberman,Gregory and I were having a happy, loving interaction about nothing in particular. Communication on my part but who knows what he was receiving.

Then he stopped me by grasping my arm and tried to tell me something. Did I have insight into what he was trying to say through his broken comments or was it intuition. Was it imagined or based on my 40 years of knowing him? Based on that experience came this poem:

The Exchange

I don't want to stay, to stay.
I want to see, to see, to see.

A brief flicker of sadness in him
Then his notice of sadness in me

Followed by an apology: I am sorry. I am sorry.
Then my giving permission: Say what you have to.

Really?
Yes.

After the exchange I tried to distract by asking about the good things in our life. Perhaps his positive answers are real or perhaps they are cause/effect of my positive voice or perhaps they are my appropriately forcing the correct answers.

"You really like it here, don't you?" "Yes."
"The people are really nice, aren't they?" "Yes."
"The food is so good, isn't it?" "Yes."
"Manny takes really good care of your, doesn't he?" "Yes."
"Do you feel safe here?" "Oh Yes" (Said with a little added emphasis.)

So insight or intuition? Insight would mean closer to knowing with proof. Intuition would be understanding with heart. Either way I have had to give the experience a lot of thought.

It appears that Gregory is content in his narrow, limited, focused community and life at Lieberman. Up until now I have avoided talking about the past or even saying "I am going home" when I leave. I do not talk about "home" or "the condo" since it is no longer part of his life. I just say, "I am leaving now."

Insight or intuition? Is it fair to keep memories of the past away from Gregory, might he enjoy re-visiting them with my help, or will doing so prove to be too upsetting to him?

Reliving the past is still too upsetting to me when I compare it to the present but perhaps revisiting discrete experiences, like our time in Mexico or a trip to Paris or a party we attended, will be less painful.

Maybe it is time to help Gregory recreate his lost memories. I'll let you know what happens.

Mary Oliver

Shared with me by a person who has had great influence and provided great support to me during Gregory and my journey with Alzheimer's. Thanks CP

“Mysteries, Yes”

“Truly, we live with mysteries too marvelous

to be understood.

How grass can be nourishing in the

mouths of the lambs.

How rivers and stones are forever

in allegiance with gravity,

while we ourselves dream of rising.

How two hands touch and the bonds

will never be broken.

How people come, from delight or the

scars of damage,

to the comfort of a poem.

Let me keep my distance, always, from those

who think they have the answers.

Let me keep company always with those who say

“Look!” and laugh in astonishment,

and bow their heads.”

- Mary Oliver

The Journey

The Journey
By Mary Oliver

One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice—
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do—
determined to save
the only life you could save.

—Mary Oliver

The Afterlife

Shared with me by friend Stevie Kallos, author of Broken for You, Sing Them Home, and soon to be released Language Arts. I loved her first two books and if you haven't read them, run out (don't walk) and buy them!

This poem by Billy Collins spoke to me saying, "Life is what you make of it!"

The Afterlife by Billy Collins

They're moving off in all imaginable directions,
each according to his own private belief,
and this is the secret that silent Lazarus would not reveal:
that everyone is right, as it turns out.
you go to the place you always thought you would go,
the place you kept lit in an alcove in your head.

Some are being shot into a funnel of flashing colors
into a zone of light, white as a January sun.
Others are standing naked before a forbidding judge who sits
with a golden ladder on one side, a coal chute on the other.

Some have already joined the celestial choir
and are singing as if they have been doing this forever,
while the less inventive find themselves stuck
in a big air conditioned room full of food and chorus girls.

Some are approaching the apartment of the female God,
a woman in her forties with short wiry hair
and glasses hanging from her neck by a string.
With one eye she regards the dead through a hole in her door.

There are those who are squeezing into the bodies
of animals--eagles and leopards--and one trying on
the skin of a monkey like a tight suit,
ready to begin another life in a more simple key,

while others float off into some benign vagueness,
little units of energy heading for the ultimate elsewhere.

There are even a few classicists being led to an underworld
by a mythological creature with a beard and hooves.
He will bring them to the mouth of the furious cave
guarded over by Edith Hamilton and her three-headed dog.

The rest just lie on their backs in their coffins
wishing they could return so they could learn Italian
or see the pyramids, or play some golf in a light rain.
They wish they could wake in the morning like you
and stand at a window examining the winter trees,
every branch traced with the ghost writing of snow.