Browsing "alzheimer’s disease"

Cry for Her

love, memory, alzheimers, marriage

As a crescent butter moon sets and the soul searing sun of the morning rises into an indigo sky
the days and nights endlessly bleed into one another like so many forgotten dreams
creating one sad and lonely heart, the shattered pane of a window in
an already fragile life that time seems to have forgotten.
the clock strikes ten, he’ll lay in bed and stir
and he will cry for her . . .

62 is a number he used to know but now he’s innocently unaware of its significance
it was a day so long ago, a crystal blue frozen moment in time that is elusive
to a cobwebbed place that once inhabited sweet thoughts, wooden cribs to be built and fighting ships on the oceans of his forever’s but
the clock strikes ten, and then again
he will cry for her . . .

She loves the man, the 62, but she knows she’s only human too
her tired eyes, her daily goodbyes, her love for the man she thought she knew
She goes to bed, rest her weary head, dreaming sunny memories of days gone by,
while never wondering why
she will still cry for him . . .

For H&G  . . .

~m

One Thing

 

This video moved me in so many ways and I am proud to share it here on my blog.
It was suggested by SKennedy of the Alzheimer’s Foundation.
I hope and pray that people watch the video, send this link to family and friends, share it with the world.

What is the one thing you never want to forget?

Your name?
The day of the week?
Holidays?
Seasons?
Favorite songs?
The names of family and friends that you love?
Birthdays?
Ordinary everyday objects?

Caring for loved ones afflicted with this insidious disease, I have personally witnessed all of the above at one point in time.
Your heart breaks for them but you know you have to move on because the progression of Alzheimer’s
never sleeps.
Sometimes, as a caregiver, nor do you.

I personally never want to forget how much I love my Pamela, my three incredible daughters and my twin sister Maureen.
(there are so many more on my list but I needed to shave it or you would be here forever)
If ever I should forget, I pray that they all softly remind me from time to time.
This disease takes and takes and takes until there is literally nothing left but skin and bones.
Just imagine a world without Alzheimer’s.
That, my friends, is a beautiful thing.
Once again, please consider supporting me in my Walk to Remember on September 30th. [see my link below]
I will be walking for my Mom, Dad and Pamela’s Dad who is currently in the middle stages of this leviathan monster.
I can’t seem to get away from it so I walk.
And I will continue to walk.
For all the lost souls . . .

One thing.
Just one thing.
It’s something we can easily remember.
But how about them?

A world without Alzheimer’s is a beautiful thing.

~m

the link for my personal fundraising page
WALK TO REMEMBER

When tomorrow comes

love, family, Alzheimer's Disease, memory

 

I read a post on Facebook from a ‘friend’ tonight.
I have no idea if he wrote it or found it on the interwebz.
That said, it moved me to tears reminding me of my Mom and Dad’s struggle with Alzheimer’s.
It’s called ‘When Tomorrow Starts Without Me’ and is a simply beautiful epitaph and message of hope that should be shared.
I’m missing my Mom and Dad tonight the way they used to be . . .  more than usual.
I’m over remembering the bad stuff.
Moving on.
Please share this . . .
Thank you, JohnD for posting!

UPDATE 8.6
attributed to David M Romano


When tomorrow starts without me
And I’m not there to see;
If the sun should rise and find your eyes
All filled with tears for me.
I wish so much you wouldn’t cry
The way you did today;
While thinking of the many things
We didn’t get to say.

I know how much you love me
As much as I love you;
And each time that you think of me,
I know you’ll miss me too.
But when tomorrow starts without me
Please try to understand,
That an angel came and called my name
And took me by the hand.

She said my place was ready
In heaven far above;
And that I’d have to leave behind,
All those I dearly love.
But as I turned to walk away,
A tear fell from my eye;
For all my life, I’d always thought
I didn’t want to die.

I had so much to live for,
So much yet to do;
It seemed almost impossible,
That I was leaving you.
I thought of all the yesterdays,
The good ones and the bad;
I thought of all the love we shared,
And all the fun we had.


If I could relive yesterday
Just even for awhile,
I’d say goodbye and kiss you
And maybe see you smile.
But then I fully realized
That this could never be;
For emptiness and memories
Would take the place of me.

And when I thought of worldly things
I might miss come tomorrow;
I thought of you, and when I did,
My heart was filled with sorrow.
But when I walked through heaven’s gates
I felt so much at home;
When God looked down and smiled at me
From His great golden throne.

He said, “This is eternity
And all I’ve promised you;
Today your life on earth is past,
But here it all starts anew.”
“I promise no tomorrow,
But today will always last;
And since each day’s the same day,
There’s no longing for the past.”
“But you have been so faithful,
So trusting and so true;
Though at times you did do things,
You knew you shouldn’t do.”
“But you have been forgiven
And now at last you’re free;
So won’t you take my hand
And share my life with me?”

So when tomorrow starts without me,
Don’t think we’re far apart
For every time you think of me,
I’m right here in your heart.


Hope for Helpers

Back in September I got an email from Sandra Byrd regarding a short book written by her husband,
Chaplain Michael Byrd called, “Hope for Helpers”, a book for caregivers of Alzheimer victims.
Sandra had obviously read my blog and knew that I had already been through the maze of Dementia/Alzheimers.
She asked if I would be willing to read Michael’s book and do a short review on my blog as to my thoughts
about it.
I must apologize in advance to Michael and Sandra because it’s taken me so long to post a review as
they were gracious enough to send me a Kindle copy gratis.

The book is broken down into five sections:

  1. Caring for Loved Ones without Falling to Pieces
  2. Appreciating the Rough
  3. Finding the “I” in Careg-I-ving
  4. Am I Lying
  5. Placing Your Loved Ones in a Care Facility

The first thing I noticed when I started HFH was the obvious compassion, knowledge and understanding Michael had of the disease.
I remember thinking how much this book would have helped me when I first shook hands with Alzheimers so many years ago.
My mother was diagnosed in 1997, my father shortly after around 1999.
I was lost in a New England cornfield maze with no cell phone and no clue as to how I could possibly get out.
Much of HFH addresses issues such as these that the caregiver goes through on a seemingly daily basis.
Although I knew many of the answers that the book’s questions proposed, I had to wonder how many
people in the world didn’t.
This book contained answers to many deep questions.
Period.
HFH strongly suggests that the caregiver look towards brighter shores, in terms of the self.
Paraphrasing the author, “Take care of yourself if you are to be of any use to your loved one.”
Many people told me that years ago but I didn’t know exactly what they meant.
But now I do.
HFH emphasizes that very point.
If you have a friend, relative, mother, father, sister, brother diagnosed with this most insidious of diseases,
download this book and lay your problems down in a way that will not only benefit your loved one but
give something back to you.
Many people reviewing it  have said, “I wish this book was around 15 years ago.”
Stop wishing.
It’s here now.
This book will ease your burden and show you what’s ultimately important in caring for a loved one.
In the end, it’s all about love.
For the price of a cup of Starbucks coffee this Kindle book is yours for the asking.
And it’s worth much more than a cup of coffee.
Trust me . . .

~m

[Want a copy? Click on the picture above]

Dear Mom and Dad . . .

mom and dad

 

Dear Mom and Dad,

For every memory lost, every heart broken wide open, every tear shed,
every life forever changed, every second chance missed,
there was always that white light of hope,
a sotto-voce prayer whispered by the many that so loved you.
I am currently living in a world that is profoundly affected by the monster that took the both of you.

This Sunday morning (Pamela’s birthday) I will walk with my wife,  your daughter, Maureen, your granddaughters, Sarah, Jenna & Hannah and Jonathan, Sarah’s friend and love.

I will paraphrase your granddaughter  Hannah’s Facebook profile, “We will walk for you . . .  You may have forgotten but we never will.”

Wally and Ginny Murphy.
Mom and Dad.
Uncle and Aunt.
Grandmother and Grandfather.
The lost and never found.

There were so many things that you missed out on, so many precious moments that you should have seen, so many defining points in time that change young lives and this
insidious bastard took that away, forever.
There’s little to be gained with a ‘what could have been’ mentality but maybe that’s just part of being human.
It’s the way we are wired, methinks.
I take comfort in the knowing that you hopefully ‘see’ . . .

I will be walking on Sunday for the two of you knowing that you can see all of us moving towards a cure for the thing that stole both of you from us . . .  all too soon.

On Sunday morning we will walk to remember two (+1) people we will never forget.
We miss you both dearly . . .

~Michael
~Maureen
~Pamela
~Sarah
~Jenna
~Hannah
~Jonathan

[Murphy’s Law]

Lost Soul

Over the years, I have felt a connection with several Bruce Hornsby songs.
Fields of Grey, [don't watch the video but listen to the song!]
reminds me of my daughter Sarah and my intense feelings of fatherly protection and safety for her.
[this strange phenomenon has happened for all 3 girls, truth be told]
When the song shows up unexpectedly on my Ipod I usually text her to see if everything is alright.
She sends me a text that loosely interpreted  says, listening to Hornsby huh?
I listened to ‘Lost Soul’ a few nights ago for the first time and couldn’t help but associate the words to
a person suffering from Alzheimer’s, the most lost of souls.
When the chorus kicked in I heard a female voice and thought, hey, that’s Shawn Colvin.

Here’s the connection with me and Shawn Colvin.
And here’s the song.

Not sure if this song is speaking to the issues regarding dementia or AD but I took it that way.
‘Lost Souls’ is chilling lyrically and musically sophisticated beyond belief.
Play the video and read the lyrics below and maybe you will see.
If not, it’s still a great tune.
Hornsby is an amazing musician, jazz/classical pianist and songwriter and Colvin just gives me a bad case of goosebumps. (and maybe because she’s a real cute blonde)
I am doing my first walk for Alzheimer’s research on September 25th to raise funds for some badly needed research.
Check back in the not too distant future for more info if you would like to help me meet my goal.
I already have a webpage HERE.
Check it out!
Until my next post, please be safe, happy and well.

Michael

 

There was a man of confused and sad nature
Thought no one loved him that was not true
He said he was a lost soul didn’t fit in anywhere
Didn’t know where to turn or who to turn to

There’s a lost soul coming down the road
Somewhere between two worlds
With an oar in his hands and a song on your lips
We’ll row the boat to the far shore
Row the boat of the loved lost soul

Ever since oh I can remember
We all tried to ease the pain
Took him in when he needed some shelter
Tried to make him feel he was one of us again
There was one day oh I can remember
He sat alone with a pencil in his hand
All day long he drew careful on the paper
In the end just a picture of a man

Of the lost soul coming down the road
Somewhere between two worlds
With an oar in his hands and a song on your lips
We’ll row the boat to the far shore
Row the boat of loved lost soul

Oh dear Mary do you remember
The day we went walking downtown
As I recall it was in early December
After school had just let out
When I see you on the street in the twilight
I may tip my hat and keep my head down
You show me love but maybe I don’t deserve it
I’ve been called but not been found

There’s a lost soul coming down the road
Somewhere between two worlds
With an oar in his hands and a song on your lips
We’ll row the boat to the far shore
Row the boat of the loved lost soul

Raymond

My nephew Ryan sent me this link.
I’d never heard of Brett Eldredge before.
The story is quite simple and one that our family is all too familiar with.
‘Katherine’ mistakes Brett for her son Raymond who died in Vietnam.
As Eldredge says, “And that’s alright by me.”
For anyone coping with Alzheimer’s or working in a nursing home this song should be heard.
God bless the all the Raymond’s of this world of which there are many.
Lord knows, I used to be one . . .

Welcome to the cerebral gas exchange

It has been a crazy few months around here (hence, the reposts)
and I am still
desperately trying to get caught up and back to square #42.
By the time I reach ‘Square #1‘  it might be the name of a new high fiber breakfast cereal
that enables you to ‘pass’ wicker furniture out your keester like soft butter.
That said, thanks to all that have continued to stop by.
I have come to a turning point here at Smoke & Mirrors and can’t quite figure
out how to navigate the current seas. (hence, the current rambling post)

My original intention was for this place to be a ‘cyberpad’ to collect my many thoughts and
emotions as I watched both of my parents battle Alzheimer’s.
It was just that and so much more, truth be told.
I am still estimating the casualties physically and emotionally but have temporarily closed the door.
I will re-open said door at some point but for now it’s off limits as I’m still too close to it.
The Alzheimer monster is never far away though as it currently sinks its sharp teeth
into the life of my father-in-law.
This time things feel different if only because I know exactly what to expect.
It doesn’t make it any easier to watch the scenario play out but I’ve learned where
to store the emotional carnage.
I still fully expect to have the occasional  ‘son of a bitch, I hate this disease’ day but this time at least
I’ll be prepared.
Maybe even overqualified, IMHO.

I am still sorting out in my head the three weeks we spent with Maureen and Mark.
I have no idea where to even start;
“It was a dark and stormy night; the rain fell in torrents–
except at occasional intervals,
when it was checked by a violent gust of wind which swept up the streets . . . “

Nope.
That would never do.
Check out the Wordle at the top of this post.
It is a very good rendition of not only my current state of mind but of three most incredible weeks of my life.
And it may explain just how crazy things have been around here.
Pamela and I now have our eyes solidly set on a 2 week vacation next July.
My boss gave me a thumbs up today on an extended sojourn to Australia so the planning can now begin.
As far as the blog is concerned, for now I’ll just play it by ear.
Lord knows as a musician I’m used to that . . .

Stars

*a repost from a time I can’t seem to forget

This morning, the highway was filled with a multitude of disembodied headlights, each one searching through a seemingly inexhaustible mist, an optical illusion a bit tough to handle at 6AM when you’re still sleeping.
I made it onto the train and stared out the window at the relentless sheets of rain.
The dark and rainy skies made me think of a night many years ago when I went to my parent’s house after a slew of frantic phone calls from my mother.
She would freak out on a fairly regular basis back then.
At the time, she was in the late beginning stages of Alzheimer’s and I was still in total denial.
I pulled into the driveway and saw her silhouette standing in the open doorway.
I remember thinking she looked peaceful standing there
and not the frantic woman I’d just spoken to on the phone.

I called her name.

“Mom?”

No response.
As I walked up the stairs, I could see her staring off into the distance, detached and trance-like.
I stood next to her to try and see what she was looking at when she said,
“Look. There’s million’s of them.”

“Millions of what, Mom?” I asked.

“Stars,” she said, “Can’t you see them?”

In the front yard there was an old oak tree, the leaves still dripping from the heavy rain.
Behind the oak, I could see the front porch light from the Jacobson’s house
up on the hill illuminating the thousands of falling raindrops.
Stars, I thought, it’s raining stars.
I took off my glasses to see the world, if only for a moment, through my mother’s eyes.
A simple oak tree was being transformed into an impressionistic masterpiece right in front of me, thanks to a few misfiring neurons located somewhere in my mother’s brain.

“It’s beautiful, Mom.” I said.

“Yes. It is…” She replied.

I didn’t realize it at the time but the raindrops falling from the tree closely echoed the neurological avenue my mother was currently traveling down.
The drops of rain falling and disappearing into the waiting earth were so much like her failing memory,
a collection of antiquated shooting stars ultimately destined to crash and burn, their celestial beauty gone all too soon.
As we stood silently on the porch, an internal cog clicked inside me.
It was a frightening moment of absolute realization.
My phase of denial had finally come to an end.

~m

Without Dad

It amazes me the distance that disease can create between people and families.
Alzheimer’s takes everything you once knew about someone and throws it in a closet,
locking the door, throwing away the key.
This Father’s Day is the first without my Dad and I’m trying to sort out my innermost feelings.
I will go to the cemetery tomorrow morning with a coffee in one hand and a cigar in the other
and try to remember the man I once called ‘Dad’.
I miss him. I truly do.
Not as he was in the past 6-8 years but in the days when I could tell him a joke and
he would laugh; when I could go to the fridge and ask him if he wanted a beer; when I could say, “Hi, Dad,”
on the phone and he knew it was me replying, “Want your mother?”
I will be with him tomorrow as he will be with me.

This Father’s Day will feel a bit empty, strange and maybe a bit of a relief that
I don’t have to see his withering body sucking on pureed food through a straw.
Tomorrow I will see him as the guy that never missed one damn baseball game of mine,
always called me ‘Michael’ not ‘Mike’, a man that taught me how to throw a baseball and pass a football,
a man that never ever let me down, a man that taught me what it means to be a man.
I still miss him dearly but tomorrow I will begin re-building in my mind the complete memory
of a longstanding hero of mine.
If I die being half the man that he was, I will be truly blessed.
Make time to visit or call your Dad today.
Happy Father’s Day to all.
Love you, Dad.

~m

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