Saturday, January 22, 2011

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.

Tuesday, January 18, 2011

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

Saturday, January 15, 2011

Reasons to Join a Support Group -1

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

Friday, January 14, 2011

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.

Wednesday, January 12, 2011

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

Monday, January 10, 2011

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?

Sunday, January 9, 2011

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. 

Friday, January 7, 2011

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.

Thursday, January 6, 2011

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.

Monday, January 3, 2011

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.