Browsing all posts in alzheimer’s disease.

Aug 16th
Monday

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 . . .

Jun 25th
Friday

*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

Jun 19th
Saturday

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

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 19th
Monday

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

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 25th
Thursday

Got this from a close friend of Sarah’s.
It is, in a literary sense, quite haunting and spoke to me in ways unimaginable.
It was supposedly written by a 15-year-old girl.
Pretty amazing and apropos for this particular time in my life.
Thank you, Katherine.
You are, in many ways, an angel,
although you would never admit it . . .

“The soul and the body exist separately.
While the soul uses the body as a vessel to express itself,
they never truly become one.
For this reason, when one’s body passes on,
the soul does not follow.
Instead it remains living; free to wander where it pleases.
Visiting its favorite places, or doing its favorite things.
And if, while on Earth, the soul found someone so special that it wants never to leave them,
it will enter that person and continue to live.
It chooses to stay in that person.
Forever watching over them,
Protecting them,
Loving them.
Forever being with them.
Realize this, remember this, keep this with you.
Because the bodies of the ones we love will pass on,
But their souls will never die.”

*thinking about Dad and angels

Mar 10th
Wednesday

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

 

4~p

Mar 1st
Monday

It’s like watching the slow and dying embers in the
backyard firepit on a sultry summer’s night.
In some ways I understand it, some I don’t.
Maybe it’s meant to be that way.
It’s hard enough to watch someone you love die but it’s the
‘dying marathon’ of Alzheimer’s that really hurts inside.
I had a deeply emotional visit with my father this past Sunday.
I felt this impending sense of detachment from him that I’ve never seen or felt before.
My sister says it’s that way with most patients in the final stretch of the endgame.
I am trying to make myself understand that.
Not doing too well with it either.
The past 5 years have been a sad and long goodbye and although I’ve said it before,
I want to believe in my heart that he is ready.
My father did not cry yesterday which had me scratching my freshly shaved noggin.
It was almost as if he was trying to be strong just for me,
but maybe I’ll never know.
I sat and held his thin and badly shaking hands and really looked at him,
into my father‘s eyes.
My heart was instantly shattered as a lifetime of tender and lost moments came crashing into my mind.
I want many things for my father and not one of them was in this room that has held him prisoner for the past 5+ years.
I want him to walk and feel the rays of the sun on his face again,
love and be loved in return, find the missing piece of the puzzle he’s been searching for since he got sick.
Find my mother.
I want him to find enough strength to finally fade away and find his corner of the sky,
his cerulean peace.
It’s time for my beautiful father to go home.
Because of all the places I roam, I miss having him there the most . . .