I Love It!

It is sunny and 80 degrees here, so Valerie and I go out on the back deck.

The breeze is perfect, and I asked Val if she liked being outside.

"I love it!"

Touch

Sometimes there are no words, but there is a connection. 

Pocket Full of Mumbles

Valerie always knew the lyrics to songs. She knew them very well. She would always tell me when I messed up a lyric when performing. 

During the past 2 years Valerie's speech has diminished to the point where she can only get out a few phrases. It is a difficult thing to witness, especially for someone who was a born conversationalist with an amazing vocabulary.

While getting her ready for bed, I always mention the names of her family members and friends.
She always repeats her oldest brother's name Alan. Though lately, in the past several months, she wasn't even repeating Alan's name to me.

Last night, as I was talking to her and mentioning names, she repeated almost all of them. Alan, Alexis, Dianne, Bill, Mom, Julia, Ilona, Vinny and her favorite, Uncle Ray. She hasn't done that in a VERY long time.

Valerie loves music and I have an Ipod filled with all her favorite songs that plays all the time. Music has an amazing effect.

Last night I was playing guitar and singing songs for Valerie. She was in her hospital bed and seemed sleepy.  As I was singing the first verse of "You Are My Sunshine", she sang all the lyrics with me for the first verse!
And she was smiling and in good spirits. 

The last song I played for Valerie last night was "Feeling Groovy" by Simon and Garfunkel.  Valerie once wrote of the lyrics to that song, and that the idea of perfection was "no deeds to do, no promises to keep." Despite her "pocket full of mumbles" (a line from the another Paul Simon song "The Boxer", just in case you didn't know that...I sang that for her as well) she is still Valerie and like the sun on a cloudy day, peeks out here and there.

"You are my sunshine, my only sunshine. You make me happy, when skies are grey. You'll never know dear, how much I love you. Please don't take my sunshine away."

That she sang those lyrics last night shows me that, although she cannot always express herself, Valerie is "still there", and she always will be for me. She is my sunshine!

LOVE CONQUERS ALL

Lost In The Attic

There are many things you find in the attic when you are trying to organize something that looks like it was hit with an atomic blast. But you do find things. That is at least one of the reasons I'm trying to organize the attic, among other, more mundane reasons. Valerie's speech, her voice is different now... aphasia plays cruel games when you are searching for your wife's voice...it is a constant search and an always near anticipation for the song of your spouse's love and affection. Val did say my name on Valentine's day this year.. (2013)it was expressed in a sort of searching way, like Guy? Guy? where are you?

This letter was written to me by Valerie back in 1994. I found it in the attic and stuffed it in my pocket to read when I was done today's toil in the attic.

I think I remember reading this letter. What I do know for sure, is this is how she and I were... we loved hating that we were falling in love....we fell into each others soul resisting, and laughing all the way. I could say more, maybe later, Val's letter will suffice for now..

March 22, 1994


Dear Guy:

I hate you because:

I'm going'to the theater tonight with wonderfully neurotic, New
Age, upper West Side friends who will amuse and challenge me, to
see the first theatrical production done by Disney on Broadway,
in a theater that underwent a multi-million dollar renovation to
house a sweet and sentimental fable/morality play that I adore;
I'd rather watch Letterman with you.

I'm in love with Bill. I have been for a very long time.
I know he would return the affection if we'd been born in the same
century. The sonnets that you touched touched me a little
deeper. Philadelphia, Einstein, Dickens.Yeah, them too. It sucks.


I'm a strong person; I take care of myself and my family as best
I can. I'm independent and as responsible as possible without
being tedious. You let me be weak, angry and sad sometimes.
You bastard.

You made room in your house for me. "My Food"
is in "Your Fridge".  I can make the coffee while you
make the breakfast pizza.
I feel like Robin in the Bat Cave, Batman.
Lt. Arurra  (phonetically speaking) on the bridge with Kirk.
I've become your damn side-kick!

Worst of all, the thing I didn't want to ever happen, the thing
that shows how little self-respect I have left, exposes the
death of my reserve and the end of my resistance, the one action
I promised myself would not become a reaction - I'VE WRITTEN YOU
A LETTER. Yes, I can't think of a way to rationalize it into a note, missive. It's a fn letter. So, now I'm just exactly like "-------", aren't I? Happy? You would be. What color are her eyes? How would she have phrased this? More direct? More poetic? More in line with the cosmos? See what you've done. I'm arguing with you? And you're not here. I'm
ranting at a screen in anticipation of the face you'd make. I
hate you, Gaetano. I mean it. Don't smile, you bastard. stop
it right now. Oh, shit! I'm outahere.


Valerie

A Caregiver Faces The Perfect Storm

 We had been through this before. Sort of...

At the end of August 2011, we were getting prepared for Hurricane Irene.

I care for my wife Valerie, who has Alzheimer's Disease and is bedridden. Her ability to speak is very limited, so I look at her body language, especially facial expressions to try and understand how she is feeling. When the weather is sunny and bright, it is a challenge to care for her. Routine is the only stabilizing force in caring for my wonderful wife.  When routine breaks down, for whatever reason, there is a cost that is paid, usually by my wife. I had gotten my wife on Medicaid in 2011 and she had Home Care aids 12 hours a day, 7 days a week for over a year now. They are the lifeblood in keeping the routine stable.

The weather forecasters and news commentators love a good story, a scary story, a story that has blood. That is usually the headline.  But many of us here in the New York City area, are well aware of the many times everything but frogs and locusts were forecast to rain down on us. Last years storm was bad, but not as apocalyptic as Hurricane Sandy turned out to be. So we all thought they were crying wolf again. Not this time.

Well, it wasn't just one wolf, it was a pack of atmospheric wolves that came at us on Monday, October 29th, 2012.  The perfect storm is more powerful than any enemy you can imagine.

At about 7:15pm Monday evening, one of the wolves ate the lights! Power was out. I was in the bathroom. Perfect timing I thought. I looked out the window and saw what looked like lighting. It wasn't lightning , the "lightning" I saw was from transformers exploding and lighting up the sky with the most surreal light I had ever seen. The wolves were feeding on everyone's lights and power.

I went into the living room where my wife was in her hospital bed and turned on the battery-powered lanterns I had set up in the living room and one on the dinning room table. I turned on the batter-powered, hand-cranked radio to listen to what was going on in our now darken, scary, windy bloodied world.  This was the big one. Our cats, Sam and Dave took cover under the bed. They don't like tempests. I don't blame them.

I had supplies to last 48 to 72 hours. I had water, Ensure, fruit, peanut butter, milk, bread, turkey slices, cheese and juice. Food for Sam and Dave. I had a survival kit with a first aid kit, water, food, Mylar blankets (keeps in 90% of your body heat), the kit even had a whistle. I had a small, but very strong flashlight in my pocket. I had all these things since last year preparing for the storm that wasn't as bad.  I had put water in sandwich bags and put them in the freezer. When the power went out, I put them in the fridge so that it would stay cold for awhile. Living through the blackout of 2003, I thought we'd be with out power for no more than 12 to 24 hours. I was wrong. Very wrong.  We all were.

The Home Care aid did not come Monday. The home care agency called to let me know. That was the last time I had heard from the Home care agency. So, we were on our own.

That night I put on some music as I always do for my wife and got ready to give her a sponge bath after she had some dinner. The hospital bed and the air pressure mattress were not working without power. The hospital did have two, manual cranks to adjust the hospital bed so I was going to have to use them.  Even with the two lanterns, it was still dark, so I used a flashlight under the bed so I could fit the cranks into the grooves to adjust the bed. I was doing all of this, and trying to stay calm, and keep my wife calm as winds approaching 60 to maybe 80 mph, were engulfing our home. I heard things being tossed around the house. I thought for sure many branches were coming down off the trees and god knows what else. I stayed next to my wife the whole night, with a very large comforter at the head of the bed to throw over her if any windows broke and glass shards became airborne. My wife did not know exactly what was going on, but she did know something was going on and she seemed very agitated, talking in monosyllabic, and unintelligible phrases.  I knew exactly what she was saying and feeling. Nothing was helping her stay calm, so I started to sing to her. I sang "You Are My Sunshine" and she got very very quiet, almost completely calm. I sang it to her all night. It was the only thing that was helping her stay calm. Routine had taken a powder and this was the new routine. You have to adapt to survive. I counted the number and length of each of the scary bloody wind gusts. 15 to 20 gusts an hour, lasting 15 to 25 seconds.  Although concerned, I wasn't scared. My wife was. This went on until the wee hours. At about 5 am, the gusts had died down and my wife was sleeping on and off. I got no sleep and would not get much more over the next 3 days. I took a look out of the window just after dawn and what I saw was a mess, but not to the degree of mess I was hearing about on the radio in other parts of NYC.

Surprisingly, our aid came Tuesday morning to help me. It was a miracle that she showed up. God bless her for caring and making the effort. She stayed until 1pm and had to get back home to her family. I could not get anyone on the phone. Cellular phone service was sporadic at best.  I was able to text my wife's family and they were able to drop off some food and supplies since their power had come back on for them. I was in contact with my step-daughter who was sending friends over to give us any assistance we needed. A few of my friends came over to drop off  some supplies and support as well.

I was calling ConED every few hours to see if they could give me any sort of update. They couldn't. I told them of the situation.

I said "If you were in a rescue helicopter in the North Atlantic and you found a lifeboat with 12 people who had life preservers on and baby was in the water with no life preserver, who would you try to save first? The guy on the phone understood what I was saying, but that ConED was not prepared to take on anything like this.

So now, Tuesday became Wednesday and still no update from ConED as to when power was going to be restored.  We were quite literally on our own. When you are a caregiver for someone like my wife, the type of help needed is more than most people are aware of. It's not their fault, they won't know until they do it themselves.  I started to think about rationing the food and water we had, since I wasn't sure how long this crisis was going to last. This was war and I didn't have basic training so I could only rely on what was left of my tattered wits.

Since the house was getting too cold for my wife to stay in the house any longer, on Thursday morning I called 911 to get her out. ConEd still could not give me an estimate as to when power was being restored. And from what I was hearing on the radio, things were bad, very bad. Worse than anyone had thought or prepared for.

We ended up at the ER at Richmond University Medical Center on Bard Ave. It was warm. Thankfully again, our aid came Thursday morning to help us out. The social worker who was working in the ER, got us a room at a facility later that day as beds were scarce.

I had left my porch light on when we left for the ER. I had asked my brother-in-law Bill to drive by the house when he could, to see if the light was on. I got a call later that day that he had driven to our house and saw that the light was on. That meant that we had power. Taking my wife out of the house I knew would be difficult, but I knew I had no other good alternatives. Anyone who cares for someone with Alzheimer's knows that any break in the routine, any hospital stays, or long hours waiting in an ER, has a negative effect on them. Most people in the Health Care System, do not know that. They should. Nor do they have any expertise in caring for a person with Alzheimer's Disease. We caregivers do know that, and no matter how many times we try to explain that, we get the puzzled look on the faces of health care professionals. 

So, after I spoke with my brother-in law, I went home and the power was in fact on. I called the facility and spoke to the supervisor and she coordinated getting an ambullette to take my wife back home. I asked my family to call a plumber to check the stove and gas line. I wasn't taking any chances. I may have been overreacting, but given the circumstances I didn't care, and wanted to make sure we weren't going to have another scary problem to deal with when we got home.

What I saw while driving  between the facility and our home was alarming. Cars waiting to get gas in long lines, traffic snarled, tempers on edge, a gloomy sky, and the threat of power lines and trees falling around me got my attention, so even driving was perilous.  But I couldn't dwell on that, I had a job to do and that was to make sure my wife got back to her routine as soon as was humanly possible. No easy feat.

We got home to a warm and lit house. The one guy in the ambulette said, "Don't beat yourself up, you did the right thing getting her out today, even though the power came back on several hours after you left. You could not have known that. None of us could."  I have to say that all crews who helped us that day, were nothing short of phenomenal.

I knew that it wasn't just the storm we were going to have to deal with, but the aftermath.  It seems we are all pretty good during a short term crisis, but in a long term crisis, not so much. I had to prepare for the aftermath.  We all do.

When everyone is in a foxhole, trying to stay alive, you have no alternative but to fend for yourself if you can, because they probably can't come to your aid.  But how do you prepare for something like a Perfect Storm when you are caring for someone who cannot run and fend for themselves?

One plan I would like to see put in place as soon as possible, here on Staten Island and in all of New York City, is a plan to evacuate anyone who is home-bound and whose mobility is non-existent. So that, during a storm of such a powerful and destructive force as Hurricane Sandy, doesn't destroy our collective ability to care for the most vulnerable of our citizens.  I'm not crying wolf.

 










 

The Memory of A Day I Wish I Could Forget

The Memory of A Day I Wish I Could Forget.

by Guy Michetti on Sunday, September 11, 2011 at 6:55pm ·

I moved to New York City in August of 1993. The first attack on the World Trade Center was in February of 1993. I wasn't sure I should move to New York, but I did.
After about a year and a half, I started working in Manhattan. Whenever I would take the express bus into work, I would pass by the World Trade Center. I would look up and say, "they're still there". In the back of mind, I had a suspicion that they would be targeted again.
September 11th, 2001.

Most people who lived through that day here in New York City will never forget the events of that day. I wish I could. Val and I had just gotten back from vacation the week before. We were on a cruise to Nova Scotia. It was a great vacation.
I don't remember anything about Monday September 10th 2001. I can't forget Tuesday, September 11th 2001. I really wish I could.

Val went to work earlier than me that day. Always trying to get some overtime at the law firm she worked in midtown. I went to work an hour later. We took the same bus most days. Not this day. It was the same bus route. Neither one of us got to work that day.
I was on the bus going over the Varrazano-Narrows bridge re-reading Huckleberry Finn. I actually had two books with me that day. Can't remember the title of the other book, but I picked it when we were on vacation. It was about a young girl and her experience living in Italy during World War II. My mom lived in Italy during the war and I wondered what it was like for her, and my Dad, to live in a country that was a War Zone. Ironic when I thought about later. Maybe my mom was trying to get me ready.

I always got a window seat on the bus if could. I did that day. As I was reading and going over the bridge, as I always would do, I would look out and see the New York City skyline. On a bright day, the skyline was beautiful. Not this day.

What I saw when I looked out the window did not seem real. A very LARGE black plume of smoke was coming out of the top of the World Trade Center. This was the North Tower. It was about 8:55 give or take a few minutes. I almost looked away thinking it was a major electrical fire. Never thought it was an explosion, never thought a plane had hit the tower, never thought it could be terrorism. Of course, those thoughts occurred in about a split second or two. I could not STOP looking at what I was seeing and trying to understand all. It wasn't until the bus was off the bridge that someone said they heard on the radio, that another plane hit the south tower. Now I knew. It was an attack. The bus was diverted. We were in Brooklyn. Another report, a plane had hit the Pentagon in D.C, and another plane was "on its way". On its way where? We were going back to Staten Island. I got off the bus to tried to get the subway to get to work. The subway was not running. I could not get through to Val on my cell phone. I got a page from Val on my beeper that the World Trade Center was on fire and that she was going home. Where was she? At the office, still downtown? I didn't know.

I went into a diner to try and use the phone. Didn't work. I looked around at the people in the diner. They didn't know what was going on in the past few minutes. I was about to tell them to turn on the TV when I thought, "I gotta find Val!!"

I caught another express bus. They still were not going to go into Manhattan. I thought they would try to go over the Brooklyn or Manhattan bridges. They were going back home. Damn! How am I going to get to Val in the city??

When we got to Staten Island, I caught a local bus hoping to get down to the Staten Island Ferry terminal. Val always said, "The ferry runs all the time. No matter what." It was going to be my only chance to get to her. I had to get to her.

After about 15 minutes, the bus stopped at a red light. It was right across the street from a fire house. A fireman got on the bus and said, "By the order of the Fire Marshall of New York City, we are taking command of the bus. Please get off the bus and wait for the next one". As I got off the bus I put my arm on the Fireman's shoulder and told him, "Be careful. God bless you!"

Now I was on my feet. Walking. Where was I going to go? It would have taken me an hour or two to get to the Ferry Terminal on foot. I walked up a hilly street to one of the main streets here, Victory Blvd. and thought I would catch the bus there. I was a bit out of breath. I thought, "this is not what it feels like to be in a war zone, New York City NOW IS a war zone!"

No buses were going to the Ferry Terminal. Damn! Ok, get back to the house, get in the car, and go down to the Ferry. That's what I did.

I was still trying to get Val on the cell phone. Nothing. I didn't have a minute to think that there might be more planes coming in, all I knew was that I had to find Val.

I took Bay St. to get to the ferry terminal. From Bay st. You can see the Manhattan sky line. Not today. At that point, both Towers had fallen. All I could see was smoke. It engulfed all of the downtown area. It was as if the towers had fallen and destroyed all of downtown Manhattan. I thought to myself, that's where Val is. Damn! Gotta find her!

My plan was to get on the Ferry and try to find her. The ferry was running. The local news on the radio said it was. But, it was ONLY letting fireman get on the ferry. Damn!
Ok, well firemen are great guys. My next door neighbor was a fireman. They won't try to stop me. They will let me find my wife.

Parked in the ferry parking lot. Ran to the ferry. I see the firemen getting on. Ok, I'm in for a fight, but this is war. I gotta find Val.

As I was getting to the ferry, I tried my phone again. All I got was voicemail. It was Val. There were two voice mails. The first one she sounded like she was in a panic. She saw the second plane hit the south tower. She was coming out of the Brooklyn Battery Tunnel downtown. She was in the area now engulfed by all that smoke. The voicemail cut off. Not sure why. The phones were not working that well on that day. For a split second I thought I had lost Val. DAMN!!

The second voice mail "Guy, I'm on the 62 bus. I'm 10 minutes from the house. Where are you?"
At that point, the tension in my soul was released. I bent over and let out a wail of some kind... one of the fireman said, "Hey man, you ok??" I said "yeah, I'm ok now. Please be careful. God bless you all!"

I drove home. Still could not get Val on the phone.
I walked in the front door and Val and I embraced for what seemed like hours. She was ok, we were ok. For now.

The rest of the week is a blur, but we could not get to work for the rest of the week.

Val was helping people as they were waiting to board the ferry back to Staten Island. She saw a friend of hers who had gotten hit with all the debris from the towers. He was in a panic. Val did the best she could to calm him down and clean him up. Val's cell phone was working that day. She gave to to anyone who needed to make a call that day. From what I remember Val said she saw the plane hit the south tower. She was waiting for the ferry when the first tower fell, and she was on the ferry going home when she saw the second tower fall.


What Val saw was horrific. I know that it affected her deeply. I hope that memory is erased from Val's mind. But something tells me, that at least the emotional turmoil of that day still lives with her.
I still cannot remember Monday September 10th 2001. I wish I could and forget Tuesday, September 11th. Of course, I never will.