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,

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]

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

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 . . .

*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

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

There are several things I do know about my nocturnal comings and goings.
I dream in vivid color, for one thing.
Not just fundamental colors either.
My synapses and neurotransmitters treat me to a 4th of July palette of incredible and wondrous things.
My dreams are intensely complex, symbolically speaking, and I have yet to
understand what they truly mean.
I have also been known to get out of bed at 3:47AM to write down many a
soon-to-be elusive thought.
For the past ten years or so,
I have yet to have a dream that included both my mother and father.
It’s always been one or the other.
Given the circumstances surrounding the past chaotic decade,
that makes some logical sense, I guess.
As I said, my dreams have had ‘Ginny’ some nights and ‘Wally’ on the others.
Never together.
Until last night . . .

Off in the gossamer covered distance I could see them standing together,
holding hands . . .  smiling . . .  still.
They were underneath a tree of great age that was surrounded by what looked like
thousands of these tiny purple flowers.
I was physically moved (somehow) closer and I immediately noticed that they both looked happy,
healthy and totally at peace.
My mother was wearing a royal blue, knee length coat.
My father, a crisp white shirt and grey pleated trousers.
I smiled at the sight of the two of them, so obviously happy together and said,

“What are all these flowers?”

My mother smiled and said,

“They’re bluebells, Michael.  Each flower is a dream of ours that somehow came true.
No more sad, just more good.”

She turned (in slow motion) and kissed my father on the cheek.

They stood underneath the bluebell tree as small white flowers began falling like an unexpected springtime snowstorm.
They faded into the distance, transforming themselves into a Monet-like watercolour.
I faded into my dreamworld distance as well.

Before I went to bed last night, I had never heard of a flower called a ‘bluebell’.
I found it quite appropriate that the beautiful flower is not quite blue but purple – a color closely associated with Alzheimer’s Disease.
Thinking back on the dream I found it odd that my father never said a word,
though he appeared to be quite content.
Maybe the serenity I saw in his bright eyes told me all I needed to know.
I feel that their hearts have healed after all these godforsaken years apart.
Although mine is still on the mend,
I now believe that there are better days ahead for them
and for me . . .

*a little something from the wonders of the internet regarding ‘bluebells’

“Bluebells have long been symbolic of humility and gratitude. They are associated with constancy, gratitude and everlasting love. Bluebells are also closely linked to the realm of fairies and are sometimes referred to as “fairy thimbles.” To call fairies to a convention, the bluebells would be rung.

Bluebells are widely known as harebells in Scotland.
The name originated due to the hares that frequented the fields covered with harebells.
Some sources claim that witches turned themselves into hares to hide among the flowers.
Another name for bluebells is Dead Man’s bells.
This is due to the fact that fairies were believed to cast spells on those who dare to pick or damage the beautiful, delicate flowers. The people of Scotland are fond enough of the flower to continue this tradition
in the hopes of protecting the little flower.”

M

Some thoughts from many years ago (2006)
Seems like yesterday . . .

We had my father over for Easter dinner on Sunday.
My sister wanted to pick him up and bring him over; something I believe she had to do.
I think she fears there won’t be many more left to share.
Sadly, I would have to agree.
Actually, I would have agreed over a year ago.
I have to give her credit for going through the rigmarole of getting him ready,
seated safely in the car and bringing him over to our house.
I’ve been there, done that and bought the t-shirt.

My father has a difficult time walking these days reminding me more of Charlie Chaplin than the man I once called “Dad”.
It’s an unfortunate physical side effect of a brain at war with total neurological disintegration.
We eventually got him into my living room and plopped him down in my favorite chair:
one, because the chair is just so damn comfortable
and two, because when we finally let him go, it would be impossible for him to miss it.

We all sat down to eat and my sister and I filled his plate with ham,
green beans and Au gratin potatoes, all of which we cut up into pieces to make it easier for him to feed himself.
And feed himself he did.
He ate everything on the plate.
Either my cooking was really good that day or where he’s currently staying is really bad.
Whatever the case, it was wonderful to see him enjoy a meal.
He didn’t speak a word as he ate.

My wife caught him stabbing at an empty spot on his plate.
She gently rotated his plate to where the food was and he was none the wiser.
Mission Accomplished.

The rest of the afternoon went off without a hitch.

After eating, we ushered him back to my chair where he fell asleep; perhaps shuffling through his own little world of monochromatic movie screens and silent dreams . . .  a sleeping Charlie Chaplin.

We woke him an hour or so later and got him back into the car.
As I fastened his seat belt, I looked at him as he peered over the rims of his glasses and I said,
“No Boston Marathon for you tomorrow, young man.”

I’m sure he didn’t understand a word I said but knew enough to do a little chuckle and mutter, “Yeah”.

He plays the game so well most days so why the hell can’t I?

For me, the Easter cupboard was somewhat threadbare in terms of holiday revelations
and personal epiphanies but I did get to marvel over the way my Dad still gets through his days.
In many ways, he’s graceful in a way I may never be.
As long as his surreal movie keeps playing,
I’ll continue to watch him as he shuffles through his seemingly silent and black and white world,
just like Chaplin.

~m

[photo courtesy of Kelly]

I’ve been mulling over in my mind the past several weeks wondering if I could
crystallize my many thoughts into one fine black point.
The little voice inside my head just said, “Are you really serious?”
Since the night I wrote ‘Boxes’ my world has changed dramatically.
On one level, there is this welcome sense of relief regarding the final end for my father and his long fought ordeal; another level acknowledges a deep sadness knowing and accepting the fact that he is truly gone.

I took a ride yesterday afternoon to North Cemetery where my mother and father are now buried.
It was unseasonably warm with a cobalt-blue sky, a Cape Cod-like sea breeze and enough
brilliant sunshine to make me start daydreaming about the summer months ahead.
This place where the earth now wraps its arms securely around my parents has become
hallowed ground for many reasons.
For me, it is a tangible point of communication, a visible portal to somewhere I’ve never been,
a place where special things happen and are accepted for all that they are.
It was no different yesterday as I stood staring at the rose granite bench bearing the names:
Virginia A. & Walter M.
Best friends, I thought.
The engravers had paid a visit and finished the stone.
The circle was now complete.
I was alone in the cemetery and sat down on the sun-warmed bench, stretching my legs out into the sunshine.
To my right was the small flag stuck in a holder that now marks my father as an American veteran.
I was sitting for less than a minute when the wind picked up.
The tiny flag began waving gently and touched my arm.
“Hey, Dad,” I said, smiling at the thought.
The flag continued to wave, touching my arm, my soul, my heart.
It was sitting there that I began to finally accept the finality of these past few weeks.
The stone was done, seeds were planted and tears rolled down my cheeks watering the dry earth below me.
As I stood up, the breeze ceased and the flag drooped down.
I kissed the palm of my hand and placed it on the warm rose granite bench that now held their names.
“You’re finally home, Dad,” I said to an empty cemetery.
I got in my truck and drove away a different man then when I originally came in and
for the first time in many years, something felt right.

~m