Monthly Archives: August 2006

A moment with my father who is now in the late middle stages of Alzheimers.
I wrote this on the train this morning…

I went to see my father the other day.
I needed to sign some papers so he could get a flu shot since he can no longer sign his own name.
What comes out instead are crazy lines and meaningless squiggles that would probably mean more to a child than any adult.
In my mind, I can still see his signature from not so long ago; the smooth and precise lines of legible writing that defined the organization and intellect I once associated with the man that he used to be.

He smiled softly when he saw me.
Maybe I still look “familiar” to him, which seems to me a paradox because he’s become a total stranger to me.
My sister had been to see him and asked that I stop by and trim
(please, excuse me here) his nose hairs which were, in the words of my sister, “long enough to braid”. Hey, hair grows, right?
His beard was stubbly as well; a testament to his growing aversion to anyone strange getting near him.

“Would you like a shave, Dad?” I asked.

“Ok.”

He doesn’t say much more than a few words these days and is sadly beginning to dabble in a bit of gibberish as well.
I know the pattern well by now.
He was never a talker anyway but these days I feel he’s just dog tired of trying to communicate his needs to the strange world around him.
I’ve learned over the years that it’s just easier for me to talk about… things. Anything relatively inconsequential works: my life (boring),
the grandkids (cool), the weather (foul), food, the Red Sox (suck season)… Nothing too complicated.

Questions are pointless and leave him frustrated because he searches for an answer I know he’ll never find.
I feel sad knowing my mother is flying with angels and can never tell him so.
In his heart he still thinks she’s alive and maybe that’s not such a bad thing because in some ways, she is.

I walk him to his room and have him sit in the bathroom for a shave.
I draw some hot water to soften the stubble and glance at him, he’s unaware I’m doing so. He looks sad to me and my heart breaks for him, like always.
It’s almost as if he knows all that’s transpired but refuses to acknowledge it to the world.
It should be an unusual thing to shave your father’s face but after all he and I have been through it seems almost a comfort, for him and for me.
It’s simple and it’s right.
He seems to enjoy it as much as I enjoy doing it for him.
I finish and find myself face to face with him.

I look into his eyes that seem to be growing more tired by the day and I say, “How’s that?”

“It’s good.” He says.

And it is good; for him and strangely enough for me.

Shaving is an essential part of the day for any man, a ritual we look forward to, a cleansing of the soul of sorts, a clean slate we give to ourselves. Our sould begin again.
For us gorillas, it seems to complete the daily “routine”, and we like the way it feels.
So my father takes pleasure in the memory of the ritual with my help and it makes me happy.
I bring him back to the common room where the other residents are doing some light exercise.
He seems happier now than he did before and I feel I actually accomplished something.
Come to think of it, maybe I really did….

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 trancelike.
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 crystal 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.

Does there ever come a point in our lives that we stop dreaming?
Not dreaming, as in aspirations and fondest desires but the phenomenon that occurs during the R.E.M. cycle of sleep?
I often think of my dad these days and wonder if he still dreams.
If there’s not much left in the way of simple recall, what does the brain have to work with?
Seems to me like trying to write on a blackboard with an eraser.
The normal, everyday data has up and gone AWOL.
In my mind, I see his dreams as dark and foreboding things that one would rather hide under the bed much less dream about.
The complexities of everyday living get bungled up in the mind of a patient with AD; the faces, the sounds, the lights, the darkness, a waterfall of information that I know confuses the hell out of my dad.
Again, that’s my mind.

I pray that his dreams are somehow brighter than my inimical description; a world where he is once again whole and not mentally shattered like a carelessly dropped pocket mirror.
The world may never know what happens in the nighttime brain of my father.

I was listening to my Ipod as I wrote this entry when a song came on that struck me as a perfect soundtrack for my dad’s dreamworld.
It’s a song from Rikki Lee Jones. (lyrics below)

Maybe my mom is still singing to him.
This would be their song.
I just know it.
If anything, it’s an incredibly comforting thought.

Sweet dreams, dad…

 

Company (Rikki Lee Jones)

 

I remember you, too clearly
But I’ll survive another day
Conversations, to share…when there’s no one there
I’d imagine what you’d say


I’ll see you in another life now, baby
I’ll free you in my dreams
But when I reach across the galaxy
I will miss your company


Company, I’ll be looking for company
Look and listen, through the years
‘Cause someday you may hear me, still crying…
I’m still crying for company

 

 

It’s a Sunday morning and I’m kneeling in the Church of the North American Martyrs, a house of worship I’ve gone to for the past 20 years.
It’s always the same old prayers, same old pew, same old church, the same old me.
My wife and at least one or two of my three daughters are next to me (one is always an altar server these days).
From the outside, I appear to be in a state of deep prayer, and maybe I am.
I’m usually praying for two parents that are steadily approaching the late stages of Alzheimer’s disease, praying desperately for money that I can never seem to make enough of, praying for people that I don’t even know, maybe selfishly praying for myself – but sometimes I am just praying.
It seems fruitless and shallow some Sundays, but I do it anyway hoping that in some small and insignificant way my life will spontaneously be easier to bear.
The crosses I carry in life are there, so I’m told, for reasons unseen and I usually pray to Mary for the strength and vision needed to make sense out of my life, maybe to just do good.
With my daughters growing older and away from me, to my own health (physical and mental), to the mortgage payment that’s habitually late, to a wife that’s never gotten what she truly deserves, it’s on Sunday mornings that I kneel and pray for some divine intervention to make sense of it all, to make everything in my life suddenly understandable.

I’m reminded of a recent incident in Colchester, Ct., where a propane leak inside of a church ignited and blew it quite literally to pieces.
Nothing was left save for a statue of the Virgin Mary, standing virtually untouched and unblemished – a visible prayer, my rock.
I sometimes see the wreckage of my own life strewn about me, the shattered and lost minds of my sick parents, promises broken, missed soccer games, unspoken ‘I love you’s’, and I pray for the wisdom and grace to still be standing amidst my own ruins, like the solitary statue of Mary.

the whisper of a song…

In the summer of ’98, we moved my mother to an assisted living facility called Hearthstone.
At the time, it was getting downright dangerous for her to stay at home for a number of reasons: she was driving my father up a wall with questions, she was becoming increasingly paranoid and she would leave the house on a whim and disappear in a wisp of smoke.

The facility we placed her in was secured and specifically designed for people with progressing dementia.
This was to be my first foray into the deeply fragmented world of Alzheimer’s.
So many things happened while she was out there.
From the clinging and uncomfortable goodbyes to the sad moments of epiphany when I realized I was becoming a total stranger to her.
I liked to think I took it all in stride, showing the world my brave face and big shoulders when in reality, many a visit found me in my car afterwards weeping bitterly while forsaking the heavens above.

The God I thought I knew was turning His back on my mother with a deep negligence and offering me little to no discernible shred of mercy.
I was the only one that saw the situation for the tragedy that it truly was.
I felt He “owed” me.
These days I’m beginning to believe that maybe
He was there after all.
They say that hindsight is 20/20 and I believe there were many small “miracles” that happened way back then.
I was just too angry to realize it.
This story is about one of them…

It was St. Patrick’s Day in ’99 that I went to see my mother.
It was a routine visit at best.
I sat with her in the common room at Hearthstone and talked using my one-way conversation that had become a learned ritual.
Usually, when I ran out of things to talk about it was time to leave.
I went into the kitchen and poured a cup of juice for her and went to leave.
For some reason, I decided I would check her room to make sure everything was clean and in order. (Another story in and of itself)

Everything was fine and after talking briefly with one of the aides that took care of my mother, I went downstairs to leave.
There’s a long corridor that takes you past the common room before turning left to the thick oak door that led to the free world outside.

My memory of that walk down the hall goes into slow-mo right about here.

I had a gazillion things buzzing through my mind at the time.
As I approached the doorway leading to the common room I began to hear music—Irish Music—Danny Boy, to be specific, one of my mother’s favorite songs simply because her father sang it to her when she was a child.
As I walked towards the door leading outside, I stopped.
Someone was singing the song.
I turned and walked back towards the doorway recognizing the voice of my mother. I looked into the room and saw that all the residents had their heads bent down, prayer like.
There in the middle of the room was my mother, head back; eyes closed, singing every familiar word I’d known since I was a child.
Ten minutes ago she couldn’t say or remember my name and here she was going solo.
I began to mouth the words sotto voce along with her.
It was about as close as I could get to her in that one solitary moment in time. And it felt wonderful.
It was really her once again.
I’d been given mercy.

I can’t remember the last “real” conversation I shared with my mother.
I’m sure it was your indispensable ‘what’s new with you? Ah, nothing’ variety.
She’s now moving through the late stages of Alzheimer’s and there’s nothing much left to talk about, nothing to be said that can be understood—at least from my vantage point.
I’ve all but lost her.
I sit quietly and listen as she innocently tries to carry on a dialogue that only she can speak and understand. The last time I visited her at the nursing home, we sat and looked out the opaque window of the rec room listening to the rain pitter-patter on the long rectangles of glass.
The sound of the rain seems to have more of a calming effect on her than I ever could. Sometimes when I’m sitting there next to her, my mind drifts and I look back on our life and all that we shared, ultimately coming to the sad realization that there’s not much left in the sharing department either.
It was as I was leaving recently that I bent down to kiss her forehead (my own ritual) and absentmindedly asked if she needed anything.
She replied, “How ‘bout a cold one next time?”
That brief moment of clarity, if that’s what it was, caught me off guard and I laughed out loud. She looked up at me from her wheelchair (where she spends most of her time these days) and began laughing as well.
I smiled; amazed that after all her weary, cobwebbed mind had been through, she could still laugh. I took comfort in the fact that the simple act of physically expressing happiness still lives and breathes somewhere inside of her.
For now, I’ll live for those rare moments of laughter that unknowingly connect us.

I was talking to my sister tonight about our father.

We’ve both come to the same conclusion: He’s sad; intensely sad.

He can’t verbalize that to us it’s just something we feel inside whenever we go to see him. He’s at a current stage of the disease that I would classify as the “point of no return”.
For all we know, that plateau could have been reached months ago, maybe years ago; there’s no definitive way for us to know.
Frustration deluxe.
Make that a double please.

My sister and I have grown tired of the one-sided conversations that never seem to go anywhere. But we understand that they accompany the disease; we saw it with my mother and now our brains want to somehow disconnect.
I wish there were someway to reach him, to tell him about the weather or the All-Star game, to say a final goodbye and know that he somehow “gets it”.

I can’t possibly imagine of another ten years of this madness, not only for him but for my sister and me.
Please hand me the white straitjacket. And a double.

I’m listening to the Concord Symphony by Charles Ives as I write this and I’m smiling, simply because I associate Ives music with my father’s muddled and bewildering state of mind; a brain overflowing with dying neurons, dissonant tangles and the persistent plaques solely responsible for the glowing funhouse now raging in his head.

I wish I could turn it all off for him as easily as I can “pause” my Ipod Nano.
But I can’t.

I still can’t believe this is God’s plan nor do I believe in the people that say to me, “It’s all in His plan.”
That’s the ultimate in bullshit.

My dad continues to stand all alone in the pouring rain as I continue my futile search for a decent umbrella that doesn’t exist.

Maybe someday the sun will shine.

Yeah, right…

 

 

The house I’d spent the better part of my life in was sold. The feeling that coursed through me was that of guilt because I was the one who decided it needed to be sold and I didn’t know if that was right or wrong. An intrinsic part of my childhood history was on the auctioning block destined to go to the highest bidder and I never had a chance to rescind that decision.
Time had come to clean the rooms and closets that had once held the bittersweet secrets of my life. Memories descended on me like white-capped waves washing the shores of some distant but familiar beach. There was more of me here than I cared to admit, but the job ahead needed to be done and finally put to bed.

Mom and Dad fell victim to the affliction we call Alzheimer’s Disease, the memories of their lives turning opaque and as lifeless as their soon to be empty house. In time, they were both moved from a place they could no longer remember, leaving me with a house I couldn’t forget. Safe within the foreign walls of their new homes, I was handed the unenviable role of caretaker and property manager, a title that to this day still scares the hell out of me.

In one word, the house had been a ‘haven’ for my twin sister and myself. The world outside was safer to view from inside the four walls of the 15’X15’ living room than anywhere else on the face of the earth. That feeling of shelter was a concept never taught: we just knew it to be truth. The skies could be raining boulders but as long as we were inside, life was good. I looked at the scattered bits and pieces of my life, our life, resting placidly, albeit sadly, on the unseen shelves that ubiquitously lined each room. During my walks from room to room, I laughed at myself for the constant carrying of a box of Kleenex wondering what memory would push up the next batch of ‘eye dew’. The echoing voices of last days of school and first days of summer softly careened off walls barren as the Sahara desert during a dust storm, back into my heart where I prayed they would somehow always live and knew they would always belong.

Finding myself in the den, Mom’s piano called longingly to me. I felt the dusty keys as if waiting for some divine inspiration to strike but it never came. I looked inside the rickety piano bench through sheet after disintegrating sheet of music and found “The Burning of Rome”, a two-step written decades before I was born, a piece of music that my mother loved playing. Oh, how she could play! The piano brought her so much happiness and peace. Who would take care of this sad and abandoned instrument now, I wondered. She loved to play Christmas songs around the holidays and always made my sister and me sing for our guests. Now, most of her music books sat untouched, collecting more particles of dust than stars in the heavens and I wondered if anyone would ever love this piano the way she did. I didn’t feel I had the heart to sit down and play but I did anyway, for old times’ sake. It was a very short and old-fashioned song she used to play:

Toorah Loorah Loorah, hush now don’t you cry…

But I did cry.
Oddly enough, the piano reminded me of a child’s music box, out of tune but pretty in its sweet own Irish way. Closing the fallboard, it occurred to me that I wrote my first song on this piano. I couldn’t remember the words or the music but I remember the feeling of writing it; of creating art out of thin air; of running to my mother ecstatic I had done it and Mom trying not to be too excited saying, that’s my boy.

Being left alone with all these emotions has a way of changing you and my insides were changing from room to room. Stripping away all the furniture and belongings that had accumulated over some 50 years was no easy task. It was murder, plain and simple. A part of me was dying and I had no choice but to let the spirits of the past fly out of the open windows and into that black void where all shadows go.

The second floor was the toughest emotionally. My bedroom was the first door on the right when you reached the top of the stairs. The walls were a soft knotty pine (good for hanging up posters- and yes, I did have the Farah Fawcett one) and covered most of the room except for a foot of bare wall that bordered the room before reaching the ceiling.
Once upon a time, there had been an orangey rust colored shag carpet covering the floor, but that had been ripped up years earlier exposing what would now be considered ‘art deco mocha’ floor tile. It was spattered with what looked to me like black and white drops of paint.
I sat at my desk and rummaged absentmindedly through the drawers. I pulled out a crinkled pack of firecrackers as my mind shot me thirty-five years back in time. Mom and Dad used to play cards in the dining room with neighbors and friends because Saturday night was the time for Gin Rummy. The particular Saturday night that came to mind was different. I had been given some Black Jack firecrackers from one of the ‘bad apples’ in the neighborhood and I decided to try and see if I could light one and get the fuse to go out before the firecracker exploded. I guess I did it because that’s what curious (and dim-witted) boys did. Hearing the enormous bang, Dad came bounding up the stairs two at a time assuming I had just committed suicide. He shoved open the door only to see me sitting at my little desk with that ‘deer caught in the headlights’ look on my face. He surveyed the room wondering why it looked like a winter Nor’easter had just blown through with firecracker paper everywhere.
I had lived to re-live the tale sitting at the desk. That night was coming back to me in living color, the pungent sulphur odor from the exploded firecracker singeing the hairs in my nose and filling my mouth with acidic smoke. But as bad as that night was—was as good as the memory made me feel.

From the window in my room, I looked out over the neighborhood I once ruled as Daniel Boone; a neighborhood I knew like the back of my hand in the dead of night. I suddenly wanted to tell the kids moving into the house where the best salamanders were and how sliding in the winter will never get better than the Collins’ backyard and how ‘ya gotta watch the sand that covers the road on the cul-de-sac turn when you’re on your bike ‘cause if you don’t you’ll wipeout.
The seasons of my life stretched out over the neighborhood as I said out loud: I can’t say goodbye to this house when there’s still so much of me in it! My voice echoed off the tile floor of my bedroom wanting a reply.
It would be months after the closing of the house and that final locking of the door before I would see some closure enter my life.

Business often took me near the house but I chose to stay on the highway, not wanting to admit to myself that someone else was living there; looking out windows I once looked out of; playing the piano I once played; watching the sunset from the deck in the backyard, the sky painted with deep royal purples and cotton candy pinks as stars twinkled on, one by one—that was my sunset.

But one late August afternoon, after flying into Providence after a business trip, I had the chance and the time to drive by and sneak a glimpse of the old gal. I was happy to see that her lawn had been freshly mowed and that there was a canoe resting against the shed out back.
I couldn’t put my finger on it but the house had lost its blues. She didn’t need me any longer. She was once again filled with life and light. I drove down around the cul-de-sac (that once had claimed all the skin on my left forearm) and came back up the quiet street for one final look before heading back into my own life. I glanced up at my old bedroom window, saw that a light was on and imagined some young boy staring at the ceiling, wondering what life had in store for him. I managed one last smile for my old friend as I turned on my headlights and headed for new haven.

Whenever I go to see my father I find myself ever closer to the sad awareness that he’s all alone in an ever increasing strange world.
Nothing is as he once knew it— the people and places in his life are vague and as distant as the Horsehead Nebula in the belt of the constellation Orion.
I can no longer see the man I once called my father through the thick fog of perplexity that presently surrounds him.
He was never a touchy-feely kind of guy and it’s remarkable to me that these days, in my touch, he finds solace.
I hold his hand, rub his back and pat his shoulder and surprisingly, he lets me.

I almost want him to snap out of the disease induced trance he’s in and say, “What the hell are you doing? Holding my hand. Jesus. Whaddaya gettin’ fruity?!”

“Jesus” is pretty close to right, Dad, truth be told.
He’s the one I feel I’m talking to when I utter the obtuse and one-sided conversations that I want no one else to hear.

There’s a new woman named Virginia (my mother’s name) at the facility where my Dad is and I’m told that whenever someone calls her name, my father turns his head and looks around.
In that microcosm of a moment, my mother is there and I’m thinking my father senses that.
I don’t witness it but I can’t help but wonder if he’s missing her.
Part of me is happy that he harbors this memory of her somewhere inside while another part of me feels his sense of pain and abandonment.
But maybe that’s just my rational mind working overtime.

I went to my mother’s grave the other day.
The cemetery was quiet, save for a light breeze whispering through the trees.
There were no tears for my mom, I’ve shed them and I know she’s finally at peace in a beautiful garden of stars in the heavens, my heart can smile.
But I can still hear my own internal voice asking the same simple question I’ve been asking since they both got sick: Why? Why, God?

They never even got to say goodbye.

The world around me is silent and I realize that I’m alone . . . just like my Dad.

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 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 Augratin 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 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 will never be.
As long as his surreal movie keeps playing, I’ll continue to watch him as he shuffles through his seemingly silent world, just like Chaplin.