a month ago my daughter asked me if daddy was "bad".
"no", i said, "he was sick". and i left it at that. since then i feel that one day i will have to explain myself to them. explain my actions, explain why i chose to care for their father over them, explain why his body acted the way it did.

when jim had died i found files on our computer, a sort of mini memoir, of major moments in his life along with some advice for the kids. i have been thinking that i should do the same.

i tried it. i failed. it just isn't my thing.
then i tried it again because i don't want my kids dealing with rumors for the rest of their lives if something should happen to me before they are old enough for me to explain myself to them. and it works this time. i'm writing to them not as a memoir but as a work of fiction. and not our whole story chronologically though. i am starting with the last hour and a half that jim was alive for, if you would would call it alive. i've changed our names and it is just about how i felt like i was racing death in order to meet him at the moment that the story starts.
but writing what had really happened and how i really felt as a work of fiction made me realize something. i am still in denial about the about most of this experience with death. TOTAL DENIAL.  i can't even admit to myself that i felt some of the things i did, even on pieces of paper that only i read.
i'm really not sure how to deal with this or if i even should at this point. i'll just keep writing until i am finished, maybe it will sink in then.

Thankful

So this Thanksgiving I was actually thankful for something, unlike last year.
And the picture is what it was. When I see them in pictures together I get a sense of pride and I share this pride in my heart with Jim. Where ever Jim is I hope he cannot see them, that would surely cause him pain. I'm sure that the next life gives us some sort of magnificent understanding of all the pain and pleasures of this mortal world. But at times I feel like Jim's love for his kids could transcend this "understanding". He had waited till he was in his 60's to have children, they brought him complete joy. It was different from my love for them, which sounds odd, but it was. And his love is still here, I can feel it. So much so that when one of the kids is sick and needs to go to the ER my instant thought it "Jim, don't you dare take one of the kids to be with you!" ...how silly this thought is. But I think it automatically when I feel like one of the kids is in danger.
Jim's love for his children was strong and I still feel the remnants of it. I hope that they can feel it too.

i told someone something about me today, something that they hadn't known before. i'm sure that it doesn't matter much to them but i can't help but feel that i've put an incredible about of weight on them. that i  threw some unpleasant feelings upon them. and its not really "this" person that bothers me but that one day i will meet new people and they will think that me and my kids are a cute little family; then they will learn little bits of what has happened to us, what the sick jim did to me, what my adorable little kids saw. then, they will feel unpleasant emotions. this makes me feel ill, that the hurts of my past will hurt others who care about us in the future.

Life is moving on for us. I am now at peace at the time I had with Jim and with the time he had here. But our children's time with Jim i have yet to make peace with. I see and hear them hurting. When they watch other children play with their fathers, when Dorian asks me almost everyday if Daddy can come back, when Arwen proudly plays jims piano next to his urn; I hurt for them and the time they don't have with Jim. I wish I could take away their sadness and feelings of loss. This past year I had been mentally absent from them. They lost a part of me when their father died. I hope to fill that missing part of myself up with something good and loving for them. That is about all I can do at this point.

Grief Shift.

I had my first widow nightmare last night. In my dream I was trying to get to Jim. He was in a hotel confused, hungry, and looking for me. I was in a car with the kids trying as fast as I could to reach him. I kept on having delays; car accidents, road blocks, flat tires... And the whole time my anticipation and frustration level was going off the charts. I finally get to the hotel and run in. I see his back, he is trying to tell a hotel worker something and they are looking at him strangely. Jim is sweating and looks so lost. I call out his name. He turns around and sees me, a huge smile of relief fills his face. We embrace. I think, finally I have him, he is okay now.
This doesn't sound much like a nightmare but it was. It was too close to our reality. Him being lost and confused and I rushing to get to him. To know that he is safe...for him to know that he is not alone, that I am with him...to take that lost feeling away from him, to bring him peace.
When I wake up reality hits. He is gone. I want to hold him so bad.
The year Jim was sick I was filled with emotions that could move mountains. The year after he died I was filled with very raw emotions that I never knew existed.
This year, after your mind starts to clear up, you've been telling yourself that he is not coming back and now you actually believe it. My emotions are now cold and empty, they give me the "pit in the stomach" sort of feeling. My tears are no longer fueled by anything. They just are.
I feel my grief changing. It is becoming less intense. This is good for me and the kids. But it makes me feel farther from Jim.

Hope

Today is the 1 year anniversary of jims death. I'm staying at home today. Nobody is coming over. I will not call anyone to "talk". Why? Because I don't want to have someone try to make me laugh or discuss how I need to move on or point out that I am doing much better. Nor do i want to feel someone roll their eyes on the other end of the phone as soon as I mention the significance of the day, and then pretend to be interest for the rest of the conversation.
I have 2 friends on this earth that would respect my need for solomnness on this day. But I won't call them today.
That's it, only 2 fucking friends who have shown me true brotherly love in this past year. They don't understand the pit of despair that I was in for the past year but they were willing to go down in it with me whenever I asked them to.
The day Jim died is the day I felt like the Holy Spirit left me, I felt like this the whole past year, that God had reniged his promise. Now, on the anniversary of jims death I realize that the Holy Spirit had been showing itself to me though these 2 friends. That God had never gone back on his word and never will. Hope. That is what I feel today. Hope.

Thanks

On behalf on my late husband, who's one year death anniversary is tommorrow, and myself, I would like to dedicate a whole hearted FUCK YOU to the Medicare system and the three hospices that refused to accept him.

I repeat, FUCK YOU.

Duet

today was another bad afternoon. lots of anger and sorrow (and an infinite amount of tears). why couldn't you fight this harder Jim? why did you leave me here?
i can't call and talk to anyone about this. i'm pretty sure people are sick of it. and when i say these things aloud i feel like i'm gonna lose it.
the 6 month mark is coming up soon and i am so afraid. i have to move on and leave jim behind. in a way my heart has been sort of waiting here; waiting for him to come back, waiting for someone to fall into his place. my mind has known that this is impossible, but in grief i have learned that the mind and the heart no longer have a line of communication between them.
this is pretty much impossible  for people around me to understand. no fault of their own, in this respect i find that ignorance is bliss.

i just want things to be as they were. i'll even take you in your demented state. if i could just touch your face one more time...i think that would hold me over for another 6 months.

what is up with my brain today? I'm talking to myself (aloud), walking up and down the hallways, my stomach has that sunken sickly feeling, i can stare at the same speck on the wall for an hour at a time...
I thought these kind of days were over, guess not.  the tears aren't rolling down so that is a plus. but the day isn't over yet.
side note: dorian keeps asking why i haven't gotten him a new daddy yet. and arwen was reading that "when goodbye is forever" book to herself. i told her about jim's brain autopsy report and what they (the researchers) use it for. she told me "but wouldn't it have been better if somebody else's daddy would have gotten sick and died, then they could have studied their brain instead of my daddy's?" i just smiled and kissed her head. i am seriously at a loss on what to tell these kids sometimes.

Update at 6:45pm-
I am SO PISSED AT YOU RIGHT NOW JIM!!!!! THANKS FOR LEAVING ME HERE TO ENDURE THE REST OF THIS MISERABLE FUCKING LIFE WITHOUT YOU!
I don't know why i am so ANGRY at you but i am. and for the moment i can't stop it.

Final Verdict

Jim's brain had Stage VI Alzheimer's Disease. I spoke with the doctor that fist diagnosed Jim today and he said that Jim's "off" behavior is what threw them towards the FTD diagnosis. He said that Jim had what they call a high mental reserve (or something like that) so his brain was able to handle trauma a lot better than most people who have dementia. He said that they are currently experimenting with the ways testing for dementia is done because people with higher intelligence are not being diagnosed soon enough.
He also said that they had presented Jim's case at a conference last week. I expressed my utter lack of understanding at this whole thing, that jim could be so into this disease yet still walk and talk, play the piano, how he was denied by hospice 3 times, and how the doctors were testing for HIV and mad cow disease while he was actively dying. i left out a lot, which he was aware of, he just said he didn't know and that is what he is trying to figure out. i'm glad he called.
There are two groups of doctors in my husbands disease, those who treated him by our insurance which would be Kaiser. and those that diagnosed him and studied him, these were paid for by us and grants, this is UCLA-Easton Center.
there was never any hope in this disease, i knew it was a dead end from the beginning. I just never imagined the how alone we would be in it. even till the last moments we were alone, hospice signed us up 13 hours before he died and yet no one was here in the last hours. they didn't think he would go so quick, no mind that i said he wasn't going to make every much longer (i gave them less then a day and a half estimate), they insisted that it wasn't "time" and said that the "team" would be in in 2 days.
 he was in respiratory distress for an hour and a half. shaking, arms and legs flaring, turning purple in this fingers, feet, and face. it was like how you see people die in the movies being held in the arms of someone else. the shaking and distress for a couple of minutes before...nothing. well, drag out those minute by over an hour, it was HELL! and i tried so hard for it not to be that way, if he could have been on enough morphine to go into a coma then respiratory failure, oh Jesus,  how fucking hard is THAT TO GET?!?!

Poetry- Eulogy to a Hell of a Dame

some dogs who sleep At night
must dream of bones
and I remember your bones
in flesh
and best
in that dark green dress
and those high-heeled bright
black shoes,
you always cursed when you drank,
your hair coming down you
wanted to explode out of
what was holding you:
rotten memories of a
rotten
past, and
you finally got
out
by dying,
leaving me with the
rotten
present;
you've been dead
28 years
yet I remember you
better than any of
the rest;
you were the only one
who understood
the futility of the
arrangement of
life;
all the others were only
displeased with
trivial segments,
carped
nonsensically about
nonsense;
Jane, you were
killed by
knowing too much.
here's a drink
to your bones
that
this dog
still
dreams about.
-C. Bukowski

turning point

so i was texting a friend of mine today and the subject of how (or when) Jim and I started dating came up. while i just gave my friend a tidbit of the moment i later thought that i needed to write the whole story in my blog because i hadn't thought of that memory in a LONG time.

   So i was in Jim's office and i had just worked a proof on the black board. He was my mentor/advisor (and well, friend) then and I WAS NOT TAKING ANY CLASS OF HIS AT THIS TIME.  I was lounging on that big sofa he had in his office looking at my proof trying to memorize it. I had a copy of 'the age of reason' by Sartre next to my stuff.  He had commented on it and we started talking nonchalantly about it. I was concentrating more on the black board. then i told him that i wouldn't mind sleeping with Mathieu (from the book) i don't know why i said this, well, i do but that is another post. and then jim says that he wouldn't mind giving Lola a go (can't remember the exact word he used). 

    I was totally shocked he said this, i was expecting a laugh to brush the subject off or a request to leave his office after my comment, i wasn't expecting an equal pass. Then he asked me to go with him to a basketball game later in the week. i said okay and i wrote the info down in my little pocket book. 

   and that was it. not as exciting as one would expect a prof./student relationship to start out, but it's what i got.
   as a side note, that little piece of paper from my pocket book i mentioned above i still have. My friend andrew had it because i had written some info on the back of it for him, he later returned the paper to me after jim and i were married. and the black board still had my proof on it until jim was forced to retire. little pieces of the sides and bottom had been erased so other students could work out some problems, but jim never let anyone erase it (and it was long. took up the whole board). i kept on telling him to take it down but he never did.

this goofy picture is of jim 6 years before i knew him.
 it has always been my favorite.

  

widow bitch

this is what i've become lately.
i stopped my meds (except for anxiety and sleeping ones) 2 weeks ago today. i did it cold turkey, which i know is not a good idea, after my therapist told me i might have PSTD.
that's it, i want it to end. i don't want to do this anymore. i'm tired of grieving, i'm tired of being numb. i want myself back.
i missed my last 2 appointment's with my therapist and i won't be convinced to go back anytime soon.
i feel like a coward taking the pills and going to the therapist. when jim's death came at me with flying glass and fists i thought, bring it, i wasn't going to let that scare me away. now here i am, fleeing from my own feelings, from this pain death left behind. i have to go through this...naturally. i want to feel like i've made it to the other side with my mind.
some rough emotions are headed my way, i can feel them coming. and i want to meet them head on.

Reason to Join a Support Group-2

I started crying uncontrollably at a bar in a nice restaurant; not giving a fuck who saw me or what they thought.

Dear Blog,
    Get ready for a terrible shock.
I haven't cried over Jim in 3 days. As a matter of fact, I haven't even missed him in those 3 days. Am i over him? So soon, after 4 1/2 months? I doubt it, this reprieve is probably part of the grief. But I'm not exactly happy yet. I feel a lot like Arwen looks in this picture.  She had just picked her first apple from a tree. We thought she would be so happy and jump up with glee. Instead she just goes and sits on a curb, stares at the open field in front of her and holds her little apple. 

Arwen, Germany 2007, sitting
with some rotten apples.

So do I need you anymore since I'm not actively grieving? I don't know. 

Yours,

    G

Reasons to Join a Support Group -1

Gayle can sit for hours unlapsed,
doing nothing but stare at a box full of ash.

Caregiving Blooper

Caregivers, we aren't perfect. Most people hear of what we "put up with" or "go through" and suddenly they view us with a halo around our head. But we make mistakes, we breakdown.
Case in point:
June 2010. Jim is lying on his side of the bed watching tv. I'm not sure if he is watching the soft porn that we used to put on for him when we needed him to stay in a room. We did this so that we could go clean whatever mess, be it fecal matter or something you didn't need gloves for, he had made. Or hell, maybe I just needed some down time. I don't remember why he was in the room contently watching tv but he was.
Coming to the point; I was in my ambien daze as I frequently was (is) those nights. I sat on my knees by jims bedside and I held his hand softly crying. I remember kissing and wiping my tears on it.
No response, just keeps his eyes fixed on the screen,that's why I think the soft porn was playing. Anyhow, I call his name softly, "Jim".
He looks down at me "yes?"
I clutch his hand and put it to my chest. With tears in my eyes, " did you know that you are going to die?"
He looks at me blankly "no, I didn't".
I continue, " yes you are, very soon in fact".
His face changes. Then with the voice of a sulking toddler, "Oh nooo." He even pouts out his bottom lip.
I return his giant hand to my face, softly crying into it. I felt like we just shared a painfully intimate moment, I kiss his hand and tell him that I love him and that I will go with him though this whole thing. My heart is overflowing with the experience we just had...
Then I loving look up at him for a reassuring response.
He is staring blankly at his soft porn again.
I give out a disgusted guff. Then he looks at me, smiles, and in a gingerly tone, "Hello".

My brother loves to tell people this story, of how I told Jim he was dying. And he laughs so hard. But no one else laughs. Stories about our Jim in dementia experience always start out with "Once, when Gayle was on ambien..." -and they usually are funny. But only to us, only to Jim if it were the pre-dementia him.
And as soon as my brother starts telling one of these stories, the halo that I used to see people envisioning me with starts to disappear. Then I say " Well you know, it's hard being a caregiver..." looking at my feet.

Dear Jim,
 I went into your office yesterday looking for a DVD, on my way out I did what I always do when I leave. 
I looked at a message you wrote on one of your white boards.

(You wrote the part in red, in case you didn't know.) 
Why did you write this? I stare at it for a good 5 minutes or so before i give a heavy sigh and leave. Just tears fall down and stop by the time i reach the kitchen. I hear you telling me "Come on Gayle. Your mind is a powerful thing. Just erase the boards, donate most of the books, put my things in trunks and MOVE ON!"
But I can't do that Jim, I can't imagine how disappointed in me you must be. How many times I've heard you tell me " Come on Gayle, you know better then that." 
I'm a selfish person Jim, I wasn't strong enough to do what you would have wanted. I was always thinking about me; about what I wasn't going to let death steal from "me". 
But death was only taking what was rightfully his. And I won't erase this board. Hopefully, I will get to add my own message before death comes for me. And we will stay connected in this board in our words.
Love, 
    Gayle

Why?

Did he not deseverve to live? Were there no good reasons enough for him to stay? Did he have to die while already being half dead? Why couldn't he die while at least being alive?
Why God? Why?
Silence.
Nothing? Is this your answer? Just, silence?
I can't even feel the Holy Spirit giving me a reassuring nudge that all questions will be answered in time.
As a matter of fact, I can't even hear the Holy Spirits breath while sitting next to me as my soul asks these questions.
But my faith answers me. It is steadfast with its reply. It says that it doesn't know why. It acknowledges my questions. It is not silent.
So my soul asks and my faith answers. But why not you God? Why?

The Runaway Bunny

"If you become a sailboat and sail away from me,"
said his mother, "I will become the wind and blow you to where I want you to go."
                                                             -Margaret Wise Brown

I read this book tonight to the kids and i seriously had to stop frequently to hold back the tears. Dorian asked if i would follow him forever. Arwen asked if i would take care of her if she got "the dementias" like daddy.

My God, have i been so absorbed with Jim that my kids would even ask if their mother would be there for them? 

At times when I would ask Arwen what she thought if we put daddy to live somewhere else she would say "if we help each other we can do this a little longer momma" and that is all i would need to find the strength to keep going. then, things got really bad and i had to send them to live at my mothers. 

Thru this whole thing i tried to teach them about endurance, love, acceptance, respect, faith...but i feel at times that all i taught them was that their daddy's needs trumped theirs. 

Today is so unbelievably fucking hard! If I'm able to stand it's only half way and I'm clutching my stomach in one hand and covering my mouth with the other. It started when I was making Dorian lunch, a memory invaded my content day that had me dropping everything I was doing and brought on the heavy anguished sobs.
It was of me crying and using all the strength I had to not make audible noise. I was stroking jims head and kissing his forehead. He had his eyes shut tight and was struggling to get out of the leather straps that held him to a gurny. 4 feet away 5 or so security guards were laughing and telling eachother the story of what just happened. The guy who took my husbands punch was the star speaker, the other 4 were there to help wrestle Jim down on the gurney. At the time I just wanted to calm Jim down and not let him pass out from the meds with a feeling of confused rage. But now I have the rage, why wouldn't those guards SHUT THE FUCK UP!!!! they worked in a goddamn hospital! Did they not understand that my husband was sick, working with half a brain, that he was trying to escape and flee from them because he was afraid! Now they are standing around him laughing while he is strapped down like a frightened animal and his distraught wife is trying to comfort him! Had they no fucking compassion! Fuck!
I think of the broken glass and being picked up by my neck by Jim or the rape attempts or the hits in the face or dining room chairs flying me way; and none of those memories hurt like the ones that came from other people lack of compassion or respect for my husband. He was still a FUCKING HUMAN BEING! He had a wife and 2 small children who loved him.
I feel defeated,...shit.

Our Children

I was so out of it on the day of Jim's service that i was wondering how we all looked. We meaning the kids and I, well Jim too, but he was in the casket. So I took a look at the photos taken from the day.

this is jim, in the same spot where he had died a week before.

this is me, looking at jims body leave our house for the last time.

this is arwen watching the pallbearers carry her daddy's casket across the front of the house

and this is dorian watching his fathers casket being loaded into the hearse for the last time.

I couldn't actually witness jim being put in the hearse and driven away from our house. i quickly ran inside searching for my pills. but the kids watched, as the pictures show.

 They were even present at Jim's work service, i had to leave the room i was so overcome with emotion, i just sat in the hallway sobbing. But my six year old stayed and listened to the eulogies being said and even took condolences from everyone. Her father would have been proud. 

At night Dorian asks to see the picture of him kissing daddy goodbye. Right after jim passed, dorian climbed on top of him and told him goodbye and gave him kisses. Now the picture of him doing this brings him comfort. But it makes me cringe.

My children were acting so brave that day and in the ones to come, and here i was running away from reality or sobbing in a hallway or cringing at a picture.

I am glad i involved them in every step of this experience. Children can be very poetic in their words and actions when you seem to need it the most. Although they don't fully understand the finality of death, or do they, they have shown me what courage should look like when you are dealing with it.

trudging back down the mountain. again, and again, and again,...ad infinitum.

I read my blog tonight trying to find some meaning in all of this. I can't find any. Am I Camus' absurd human?
There is a reason for the pills I am prescribed to take at night. Now is a good time to take them.