Browsing all posts in "alzheimer’s disease".

Dec 5th
Monday

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]

Sep 21st
Wednesday

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]

Jun 27th
Monday

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

May 15th
Sunday

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 . . .

Jun 7th
Monday

It used to be so easy years ago – this blogging thing.
Most people know this blog was my own personal bridge to an understanding of a disease that
has all but consumed the better part of the last 12 years of my life.
Writing used to be so easy, life was the hard part.
Now everything has changed.
The bridge is permanently closed and my journals have been painfully empty.
Empty can be a real painful place for a writer.
I write every day but much of what I write now is too personal and heavy for blog posts.
Many will say that the bridge never closes but for me, this one has.
My reasons for needing it in my life have changed.
I have changed.
My mind is currently like a dark grey and forbidding sky that appears to be swiftly moving yet
still appears the same.
Enigmatic, much like my grey matter.
I need to find a way to connect with my insides again.
The entrance was emotionally sutured in late March of this year.
So where do I go from here?
I’m really trying to find my way back in.
Or out.
Sorry for my absence, if you missed me.
I’m hoping you have.
I’m praying for a light to go on any day now.
And I’m thinking I’ll be alright.
But time will tell . . .

~m

Apr 27th
Tuesday

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

Apr 8th
Thursday

[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

Apr 5th
Monday

I wrote  ‘The Frozen Man’ after listening to this song from James Taylor.
The song subject is a bit different than that of my poem but I credit JT with
the creative kick and ultimate catalyst I needed to write those words for my father.
My daughter Hannah, read ‘The Frozen Man’ in the pouring rain last Monday morning at North Cemetery.
Amidst the silence, there was nary a dry eye under the tent, especially me.
I listened to this song on my Nano tonight and got a bit misty.
I remember the day it inspired me to write the original poem for my Dad.
My deepest thanks to Yvonne for making my words
look so damn beautiful in calligraphy
(they were on display at his wake, btw)
Remembering my Dad today, who is no longer the Frozen Man.
He is finally free and I am slowly moving on . . .

Mar 23rd
Tuesday

His soul sleeps,
buried far beneath a long forgotten vertical landscape,
yearning for home . . .
it dreams of places remembered; warm places, complete and innocently raw

The perpetual journey through a cobwebbed labyrinth remains a stygian quest at best,
an unanswered prayer, a dimly lit votive, a quiet cry in the dark
the clouds thicken, the earth cools and a winter of the mind settles in

Rolling waves of emotion yield snowflakes of blue
that fall like sleet, slicing the spirit into oh, so many unrecognizable pieces of what used to be a life; where nothing fits or belongs but must somehow remain

still . . .

Who knows when, this sadly shattered thing will end
Only God knows when it started,
But it’s wearing pretty thin, as the winter settles in, covering the frozen man . . .

ps. love you.
m&m

Mar 10th
Wednesday

In the beginning,
[find]
the path of least resistance
[because]
God can forget too . . .

 

4~p