A BEDTIME STORY

Valerie wrote this little story back in 1994 and gave it to me as I was going on a business meeting out of town. It was in a envelope with the simple title "A BEDTIME STORY". Valerie was coy about giving me this story to read while I was out of town. It was her way of making me realize what was happening between us. At least that was my impression as I read the story that night in the hotel room. I was in awe of Valerie's ability to write such a magical story so filled with the wonder of life and love. I still am and always will be. 






                                                    A BEDTIME STORY

Long ago, in a deep wood that exists now only in bedtime stories, a young boy made his home in the hollow trunk of the very last korami tree. In fact, that the trunk was hollow tells that the tree was dying already. The story goes that the tree became hollow on the day it stretched in massive branches out in all directions and, for the first time, could not touch the branches of another korami. The good fortune for the boy was that the tree was so large, the trunk so sturdy and the fruit on its highest branches so plentiful, that it could shelter and feed him for as long as he lived before it softly crashed to earth (as it did during an awesome and beautiful storm) a century after this tale begins. Because he was alone and wished to choose his own fate, he left the name he had been given (now long forgotten) behind, like a discarded manto shell. He chose to think of himself as Kor Ami and he chose to believe that this meant "strong and forever true". 

Other boys lived in the deep wood, but none was so simply wise as Kor Ami. "What would be the true thing to do", he asked himself. It was the thing that kept him apart from the others. He did this when other boys watched the old woman's hut to steal a piece of the fine cloth she wove from the silky grass near the waterfall. He did this when he choose to gathr the ripe fruit from his tree instead of joining in the hunt. He did this the very first time he saw the girl.

She was alone in the wood, and young to be so. She did not look afraid. He thought she was lost because he did not know her and he knew every one. She walked fast but he thought she walked without direction. He slipped silently from his branch, a soft thud that landed beside her. "Where do yo go"? he asked. She smiled, but stepped back twice, so that his arms could not touch her. "I go to ---- of the wood, to the other side", she said. She was of lansai, the 
mountain; he knew this from her speech. "There is no other side," he laughed. "There is only 
the wood, this is the only place." She started off on her unmarked path without a word and he beside her easily keeping pace with her quickening steps.

They started through the wood, and he thought "She is wrong. There is nothing more than what I have, my tree, my wood." She thought, "he knows only what he sees. Let him leave me. Let me walk alone if he will try to stop me." But they walked together. He said, softly so that she heard his breath but not his words, "What would be the true thing to do?" He ventured to walk beside her through the wood, to prove that he was right.

They walked together and talked. She found that his heart carried dreams of places as her's did. She saw in his face a light as the light that parts the trees after rain. She found song in his words like wind in the leaves. Though he followed beside her, he begand to see her path. Her voice was a scent on the wind that drew him to her. He heard her stories of the other side and they became paart of his dreams. They stoppped near a pond and knew that she no longer lead, but they walked together. When they kissed, their arms wrapped about the other tightly, as if to let nothing come between them.

And she, because she wished to choose her own fate, left the name that she had been given (now long forgotten) behind, shaking it off like the dust from the kyper blossom. She choose to think of herself as Lan Sai and she chose to believe that this meant "strong and forever 
true".

They never found the other side, though they never stopped walking. In their search they came upon his tree and her mountain many times.  In their search they came again and again into each others arms, tightly to let nothing come between them. In their search they found many of the things they looked for in the light of the other's eyes and the song of the other's voice. And though no one led, they walked always ahead, together, strong and forever true. 


Valerie Jane

Sometimes you gotta know what to say!

Guy: Val, did you have some chocolate?

Val: no!

Guy: Do you like chocolate Val?

Val: Yes!

Guy: A lot?

Val: Yes, a lot!

Sometimes you gotta know what to say!

Chocolate, Kisses and Changes

Almost everyday Valerie has her favorite food... Chocolate.  We give her chocolate kisses, chocolate cookies, chocolate pudding... if it has chocolate, Valerie will want some.

When we give her a chocolate kiss, most of the time, we put it in her hand and she is able to put it in her mouth. No other food has that effect on Valerie's ability to eat. Yes, we have to feed her now. She has a great appetite.

It was Valerie's birthday last month. June 18th. She shares that birth date with Paul McCartney. We had a party and yes, there was lots of chocolate. Valerie loved the chocolate Ice Cream cake and chocolate cup cakes that her sister Ilona brought over.  Valerie turned 62 last June 18th.

 Two years ago, 2011, on June 18th, Valerie was in the hospital after a bad UTI. When Valerie came out of that hospital, two years ago, she no longer walked. So she has been bed bound for two years now. It doesn't seem like two years, but it is.

The changes in the house since then are major. A hospital bed in the living room. A day bed to sleep on right next to Valerie's hospital bed.  A nice recliner for Valerie to sit in during the day. A Hoyer lift. Our bedroom is now one of Valerie's supply stations. 

And Valerie's decline in being able to speak with her beautiful voice. That is a profound change. I would give up my right, and left hand for her to be able to talk to me like she used to. That was our whole life, talking to each other.

Every night when we get Valerie ready for bed, there's a lot of turning her on the hospital bed. My bad back is bad. I talk to Valerie and ask her how everyone in the family is doing. How's your Mom Val? How's Alexis doing Valerie? Hey how's your brother Alan doing? (She almost always repeats her oldest brother Alan's name.) How's, Julia, Bill, Dianne, Danny, Geri, Karen, Peter and Karen, Steve, Joel, Kathy and Ken.... etc...

I do this so that Valerie at least hears all their names every day. It also helps distract her from the fact that she needs help getting ready for bed. Something that the most independent person I have ever known, really hates! Every blue moon she'll call my name, "Guy?" I'm right here Val. "oh!" says Valerie.

Last night, another change. I'm holding on to her, as I've turned her on her side. I ask her if she's alright. At this point, Valerie tenderly kisses my forearm. "Val, you kissing me?"   "Yes!"  For all the heartache I feel on a daily basis, that Valerie has the horrid Alzheimer's Disease, that almost moved me to tears of joy. It was Valerie the way I have always known her, the kindest, sweetest woman I have ever known. That is sweeter than chocolate for me!

Living in their world

2010 was one hec of a year. It was the year where Alzheimer's Disease really took hold of Valerie.

You have to live in their world, when the disease starts to get worse. If you don't, you won't make it as a caregiver.


Living in their world:


1. We come home and walk into the house. Val says, "There's a fire, we have to get out. There's smoke!"

I ask Val to wait on the front porch. I go in the house. 10 seconds later I come out and tell Val "it's ok Val, I put the fire out, it's safe to go in the house." "oh thank you!", Valerie says.


2. Get Out Your Not My Husband

I leave the house. I keep an eye on Val through the windows to make sure she's ok. I wait about 10 minutes and then call Val on the phone:

"Val I got the things you wanted at the store, but I don't have my house key, can you let me in?".

"Sure. thanks honey!"

It's that simple.

There are variations on those two stories, and it doesn't always work, you need patience too.

My Journal Entry April 20, 2010

On and off I have kept a sort of running journal of Valerie's condition. I rarely have time to post to this blog I created a couple of years ago, but now maybe I have a bit more time to let other people know so if they are in this situation... what we have gone through may help... may being the operative word... 

 Journal entry April 20, 2010

When I woke up this morning Val started saying the word scouts scouts scouts over and over again I thought she meant Boy Scouts

 there was an article on the front page of the advance today about the Boy Scouts and about getting a loan to save their camp pouch

for the first and she was just yelling  scouts scouts I didn't know what to think I was barely awake

Last night while driving home Val said she was afraid of the dark
We just had diner in nj with nana bill and Dianne 

Val keeps talking about twin boys are somehow going to hurt her.. She is afraid...she has brought this up several times over the past few days
 
Took photo of Val in yard 

She was holding a bug repellant device we bought at the store and I told her that is for keeping bugs away from you when we are outside 

She said  " no this this is what will take me home" 

I held her and we talked about going home

Home is where she used to be home is who she used to be. 

 I understand now why she may hoard things.... 

She needs ruby slippers

Valerie's Diary Entry March 2nd, 2010

Valerie always used to keep a diary of her thoughts and feelings. I have been trying to keep a diary of her thoughts as she goes through all that she has to go though.

I'm going to expose a portion of her diary as it is getting harder for all of us to know what she is feeling. This is an invasion of her privacy, but i think it is important to let you all know how she is feeling and what she is thinking about, as it is becoming more difficult for her to express herself the way she used to. When we interact with Val we need to all (myself included) be more aware of what she is feeling...  

She was upset on this day so I tried to find out why... I asked why she was upset... I typed what she said verbatim: 

VALERIE
MARCH 2nd, 2010

" I'm starting to see if...

And I hoping that I can talk to you...

Sometimes nobody listens to me. They never listen. I'm an invisible..

Everybody else yells and I stay in the back
So I stand back and watching instead of living it.

Shut up 

Because everybody around there yelling 

Even when I'm around people I sit back 
Nobody listens... it's not worth it to yell out

I talk about things and they don't hear anything 

They listen in one ear

You don't listen sometimes your not listening to me. (she is referring to me at this point)

Everybody does that.... everybody yells

I know people that I like...
Because they are kind because you can have conversations

They want to hear their own...what they have"

Tuesday march 2nd 2010



I know this may upsetting, however it is the least upsetting excerpt from her diary to date...

Why Me, why not me?

I struggle with the fact that such a wonderful person like Valerie has Alzheimer's Disease. So yes, I ask God, why her, why not me? Valerie is a far better person than I can ever hope to be. She would have done much more in life, helped others and made a difference in the world more than I could ever hope.

So yes God, why not me?  It is a question I ask God every day. He could do it if he wanted to. I'm ready whenever he is...

Mister Mister

At one point during the last year and a half, Valerie started to call me Mister Mister. We all got a kick out of that.

She doesn't say my name often, but she still sort of knows who I am. She smiles when she sees me in the morning, she often looks at me when I walk into the room and says "Oh!", she sometimes looks at me with a sort of recognition and holds out her right arm to hug me.

I know many people, including myself, are so distressed knowing that someone you love may not know who you are anymore. Or at the very least, not like they used to know you and were able to express that. But I have heard this said before, and it is true, I STILL know who Valerie is. And really, it isn't at all about me.

She doesn't call me Mister Mister much anymore. Yet, she did call my name on Valentine's Day.

Doctors On Call In New York

Valerie's doctor comes to the house once a month. We started with a new doctor at the end of last year. Since Valerie has been bed-bound since July of 2011 we have had to have a doctor come to the house. The doctor is based in Brooklyn and he works with "Doctors On Call".

Here's their website:
http://www.doctorsoncallnyc.com/

Two Years Ago...

It's been two years since I started this blog for Valerie. I wish I could post more, but caring for Valerie takes up most of my time. Hopefully, I can post more. We'll see...

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