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.
Thursday, September 8, 2011
Friday, August 26, 2011
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.
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.
Thursday, August 25, 2011
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.
I repeat, FUCK YOU.
Wednesday, March 2, 2011
Friday, February 18, 2011
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.
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.
Thursday, February 17, 2011
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.
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.
Tuesday, February 15, 2011
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?!?!
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?!?!
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