Guess the Lord Must be in New York City

This song was playing yesterday on Valerie's Ipod.

I was sitting next to her singing along and she started smiling and her facial expression showed that she knew the song and was happy that I was singing to her. It was a priceless moment.

We spent so much time when we were first dating in the city. From the top of the Empire State Building, to central park, downtown, little italy, and the village... where we fell in love. I could write a book on those times.

Those memories are still in her and in me. What I'm thankful for today, is that moment yesterday, and all my years being married to my best friend.

It's wonderful to be where you always wanted to be....

Guess The Lord Must Be In New York City

Guy?

Out of nowhere sometimes it happens....


I was taking out the laundry basket to pull the clothes out of the dryer, and  as I walked past Valerie she said,

"Guy?"

Last night as I was sitting next to her she looked right at me, and with a definite expression on her face of recognition, she looked at me and said "Hi!". As if she had not seen me in long time.

Her ability to speak over the past two years has diminished so much that she barely says yes or mostly no. To hear her call out my name astonishes me.

It feels good to realize that she still "knows" who I am.  It's these small miracles that really surprise me. 

The Seizures

It was about 7 am in the morning and Valerie and I were just waking up. We didn't want to wake up. We were both tired, so we held each other for a little more sleepy rest time.

Then it happened… I'm looking at Valerie and out of nowhere it looked as if Valerie was being shocked by a Taser gun.. her body shook and her face became contorted.. then she started blowing air out of her mouth with a hissing sound and she was making puffing noises with her lips.

I had never seen this before, and I had no idea what was happening to her and no idea what to do to help her. I held her tight against me so she wouldn't fall of the bed as I dialed 911.

"NO not St. John's I said St. John… no S… zip code is 10314" I said, almost at the point of yelling into the phone…… I gave them the cross streets as well.

This always happens when I call 911, they hear St. John's not St. John. That's why I always give them the zip code as there are two streets here that have similar sounding names. It's insane when you have an emergency and you have to deal with this. One person died because of this confusion several years ago and of course nothing has been done to remedy this problem. Thank you city hall!

By the time the EMTs go to the house Val wasn't shaking and seemed to be ok.

In the hospital, for the 6th time that year(2010) they ran EEG tests. No seizure activity was seen. They put her on medications for seizures anyway.

My god, it isn't bad enough she was having so many issues due to Alzheimer's Disease, she now is prone to seizures.

That year, 2010 was when everything happened to her… paranoia, hallucinations, short term memory was getting significantly worse, she started not to recognize me, incontinence, violent agitation, a visit to the psych ward after she jumps out of the car in the middle of traffic(on my birthday)  and now the seizures. Several times at the hospital, a few social workers suggested that I should think about putting Valerie in a nursing home. I said no.

 We eventually got home care so Valerie could be home with me. That's what I wanted.  Yes I told them, it is difficult to care for her, but our system makes it almost impossible, and I will fight to get Valerie help at home. Even had to go to court after they denied her home care.  We won and got home care by Sept. 2011. And I had just lost my job of 21 years back in July of 2011.  The barriers in our system that continually tried to prevent me from caring for the person I love seemed insurmountable, but they are not. You have to fight to get help. You shouldn't have to. We are a cure culture, not a care culture. We are ok in the short term, but long term, we become fatigued and give up.  There is no cure for this disease, so you're going to have to find out if you have the guts to care.

Valerie has had small seizures since that day (4 years ago now) but last week it was pretty bad. Now since she can't speak, I don't know if she is have a stroke or a seizure, so I didn't take any chances. 911 again, the St. John's vs. St. John confusion again… all the while I'm holding on to Val and telling her everything's going to be ok..

Same story by the time the EMTs arrive, she's ok, back to the hospital… more tests that are all negative… no infections, blood work was ok…. Back home that night with the ambulette.. We have 15 steps to the front door of our house… it's now night time and I tell the ambulette driver the 15 steps situation and tell him that if he needs backup to call now…

We get home around 10:30pm… 5 guys are putting Val into a chair with straps to get her up the 15 steps on our block on St. John Ave.  We get Valerie ready for bed… (our aids with us thank god) and I throw a load of laundry in…  I can't sleep…even though I tired.

To see Valerie have these seizures is probably the most difficult thing I have to witness… the feeling of helplessness is more than overwhelming… but the need to take care of her trumps everything so even though I am an emotional wreck, I do what needs to get done.

St. John Ave.

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.