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Bill-y

Ogden, AR

#21 Oct 1, 2012
hourglass,

I am with SKTG on this one. They shitcanned that letter. You have actually got to get in their damned faces. The one thing I have learned about the VA is they expect you to act like you are still in the military and not to question anything,just obey them.
Go to the highest power there. Demand everything in writing. If they say they can only set up a meeting in two days,demand in writing the reason why. Tell them your lawyer requested that you do that. Demand in writing who and why your POA was disregarded. There is a time to be nice,there is a time to be assertive,and there are times you have to become a complete asswhole. I believe it is time for the latter.
Some nurses are great but they are not DOCTORS and frequently act beyond the level of their compentency. Don't let them do you that way.
With you both in spirit.

Billy

Since: Aug 08

Location hidden

#22 Oct 1, 2012
hourglass wrote:
Oh, good golly, I didn't realize I'd misspelled ENACTED when I'd been here earlier. I won't explain how it happened, but I'd like to thank all the grammar patrol officers for cutting me some slack.
SKTG, my way of thinking is that since the very worst has already taken place I can't afford to be counterproductive. I just have to be cool and remain fully focused on my buddy.
Don't worry about the little things. Focus on yourself and what can be done for your friend in the short term. It's just too bad that they didn't heed the previous medical directives.

I think your experience might be endemic to the medical profession. My sister, who was a nurse, had the final say on my father's final wishes and she chose to have a feeding tube which only brought him another month of misery and another month of anguish for his family. Not having ever experienced that before I didn't know what it involved but I would never now choose that for anyone. I have to believe my sister didn't realize what was in store for us either. We all have to die eventually and keeping us alive for no good reason is not good for anyone.

Since: Jun 10

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#23 Oct 1, 2012
Bill-y wrote:
hourglass,
I am with SKTG on this one. They shitcanned that letter. You have actually got to get in their damned faces. The one thing I have learned about the VA is they expect you to act like you are still in the military and not to question anything,just obey them.
Go to the highest power there. Demand everything in writing. If they say they can only set up a meeting in two days,demand in writing the reason why. Tell them your lawyer requested that you do that. Demand in writing who and why your POA was disregarded. There is a time to be nice,there is a time to be assertive,and there are times you have to become a complete asswhole. I believe it is time for the latter.
Some nurses are great but they are not DOCTORS and frequently act beyond the level of their compentency. Don't let them do you that way.
With you both in spirit.
Billy
Thank you, Billy. Truer words were never spoken: "The one thing I have learned about the VA is they expect you to act like you are still in the military and not to question anything, just obey them."

When I mailed that little letter Tuesday night it wasn't to help Fess. Admin knows who I am and responds favorably, often with a dismissal, when I report someone. I just wanted you to know, in reference to something you'd said earlier, that I do try helping pave a way for things to help other vets out at their health care facility.

I've fought face-to-face for Fess with anyone I've ever had to, and against all odds, I've usually won. The nurse in the ER that night had a personal problem, and it wasn't going to become mine. So, I walked out and never went back, waiting in the lobby for Fess to get a room. She had her pick of any number of people in there to instigate an argument with that night. I wanted no part of her. I was exhausted, and that's not my style anyway.

But, as far as this worse case scenario with Fess getting stuck on life support, I'm also not up for any sort of fight over it. Not right now. That wouldn't help HIM any. I'll have to play this by ear. I figure when I return tomorrow, that I will automatically feel like shooting through the roof all over again when I encounter a few familiar faces involved in his care. They may be about as distraught as I am, for all I know. Especially the head of surgery that had been so compassionate. I just don't know what is going to happen, just that what was done was done. I'd slept all day today, so I didn't go see him. I'm pretty tired, and aching all over, but every time I think of poor Fess, I gather up more strength, as always. God will get us through this somehow.

Since: Jun 10

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#24 Oct 1, 2012
Lesson Learned wrote:
<quoted text>
Don't worry about the little things. Focus on yourself and what can be done for your friend in the short term. It's just too bad that they didn't heed the previous medical directives.
I think your experience might be endemic to the medical profession. My sister, who was a nurse, had the final say on my father's final wishes and she chose to have a feeding tube which only brought him another month of misery and another month of anguish for his family. Not having ever experienced that before I didn't know what it involved but I would never now choose that for anyone. I have to believe my sister didn't realize what was in store for us either. We all have to die eventually and keeping us alive for no good reason is not good for anyone.
Thank you for the kind and understanding thoughts, Lesson Learned.

Since: Jun 10

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#25 Oct 1, 2012
Excuse me, I'm so sorry about your father, LL.
Bill-y

Ogden, AR

#26 Oct 1, 2012
hourglass wrote:
<quoted text>
Thank you, Billy. Truer words were never spoken: "The one thing I have learned about the VA is they expect you to act like you are still in the military and not to question anything, just obey them."
When I mailed that little letter Tuesday night it wasn't to help Fess. Admin knows who I am and responds favorably, often with a dismissal, when I report someone. I just wanted you to know, in reference to something you'd said earlier, that I do try helping pave a way for things to help other vets out at their health care facility.
I've fought face-to-face for Fess with anyone I've ever had to, and against all odds, I've usually won. The nurse in the ER that night had a personal problem, and it wasn't going to become mine. So, I walked out and never went back, waiting in the lobby for Fess to get a room. She had her pick of any number of people in there to instigate an argument with that night. I wanted no part of her. I was exhausted, and that's not my style anyway.
But, as far as this worse case scenario with Fess getting stuck on life support, I'm also not up for any sort of fight over it. Not right now. That wouldn't help HIM any. I'll have to play this by ear. I figure when I return tomorrow, that I will automatically feel like shooting through the roof all over again when I encounter a few familiar faces involved in his care. They may be about as distraught as I am, for all I know. Especially the head of surgery that had been so compassionate. I just don't know what is going to happen, just that what was done was done. I'd slept all day today, so I didn't go see him. I'm pretty tired, and aching all over, but every time I think of poor Fess, I gather up more strength, as always. God will get us through this somehow.
Your way is probably best,dear one. I have quite the problem with patience. My favorite poster is 2 vultures sitting on a limb and one says to the other,"Patience my azz,I'm gonna kill something".
Luv ya!!

Billy

Since: Jun 10

Topix

#27 Oct 1, 2012
Bill-y wrote:
<quoted text>
Your way is probably best,dear one. I have quite the problem with patience. My favorite poster is 2 vultures sitting on a limb and one says to the other,"Patience my azz,I'm gonna kill something".
Luv ya!!
Billy
Oh, that's so cute! Ya know, heres the worst part. If I'd gone along with their plan to discharge Fess on Thursday, he would have been here and I could have just let him go. Well, that is, unless I panicked and called 911. Okay, I can't go into the "what ifs". That's not typically how I am over anything. Dang, I'm just in a bad state over how this has played out so far. Yeah, and The WV Human Gift Registry is going to reject his body being donated to science since he's contracted MRSA pneumonia. I can't tell a dying man that, and get his approval on other arrangements. Not now. Damn, what a fine mess. Aw, millions of people go through this every day though. It'll be fine. I think I'm losing my mind. Nope, I'd better not do that. Shut up, hourglass! Your mind was fried decades ago.:[

Since: Jun 10

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#28 Oct 1, 2012
Luv ya, too, Billy. I'd better get some more sleep.
Take care. And thank you.
Bill-y

Ogden, AR

#29 Oct 2, 2012
How are you doing today sweetie? Please understand why I say I hope Fess has passed quietly in his sleep. Mother Earth has sent the wild turkeys outside my window this morning,maybe she has heard my prayers and letting me know.
My thoughts are with and of you and Fess.
Much love to both.

Billy
justme

Lexington, KY

#30 Oct 2, 2012
hourglass wrote:
Billy! Hi! How you doing? Me? Well, I'm not so good. Listen...
That damned hospital. Yesterday they invoked my medical poa and then ignored it today. If I've ever been fit to be tied, it's now, but I held it in for the most part. What's done is done.
I'd said to let Fess go! Instead, 1/2 hour before I got there today they had resusitated him, and now he's in ICU on a ventilator, suction, a central line, a feeding tube, and they called the urologist out to put in a foley catheter because they'd encountered complications from his prostate when they'd tried to put one in. He can't have his pain meds due to his blood pressure dropping too low.
My poor Fess is now under the worst torture imaginable, and was mouthing to me, "some water, some water". This screw up of theirs tops them all. I wish I could wake up from this nightmare. I'd expected him to quietly and peacefully pass away sometime within the next several days. He was supposed to be allowed to!
I am so sorry for you and Fess:( God Bless!

Since: Jun 10

Topix

#31 Oct 2, 2012
Hey there, Billy. Thank you for the love! I feel sort of emotionally paralyzed today with that yucky kind of ache in my heart and throat, on the constant verge of those dag-goned hot tears that want to just flow out on their own. Other than that, I'm fine.(chuckle) I'm going to leave to go see Fess in about an hour.

And, yes, thank you, passing quietly in his sleep was what he and I had always wanted. That is a very good thing to wish, hope, and pray for. Since he was prevented from slipping away peacefully Saturday, that is still all that I want for him since there isn't any room for improvement.

BTW, I tensed up when I saw the hospital on caller ID a few minutes ago. But, when I answered, it was just a nursing supervisor acknowledging my letter of complaint to the hospital director over the ER nurse's unprofessional behavior upon Fess's admission through their department last week. She said that it can't be tolerated and that the nurse is going to receive reprimand, and thanked me for reporting the incident.

justme, thank you very much!
Bill-y

Ogden, AR

#32 Oct 3, 2012
Hourglass,

Still here for you and Fess,dear.

Billy

Since: Jun 10

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#33 Oct 3, 2012
Bill-y wrote:
Hourglass,
Still here for you and Fess,dear.
Billy
I appreciate your being here and always asking how Fess and I have been doing. Thanks. It helps.

As bad as this situation is, I've adjusted. Fess is being kept sedated around the clock. I talk to him like I normally would and he doesn't seem to be aware of it until I mention that I'm getting ready to leave. Then he rolls his head side-to-side, so he knows I'm there and hears me after all.

I got a call from the ICU doc this morning wanting my consent to perform a thoracentesis to help him breathe better, which I gave. I'd wanted one done back in 2008, but was told that it was way too risky then. I figured today, what the heck, he's already on life support, so have at it. First the risks outweighed the benefits, and now it's turned into the opposite. They removed a little over a couple of pints of fluid from his right lung and everything went all right with the procedure.

I hate that they're so strict with their visitation. When he was taken to a civilian hospital last July, they'd let me stay all night with him in their ICU and drop in anytime, saying that it was conducive to his recovery. Visitation in this VA hospital's ICU is only for 1/2 hour periods at the posted times and nothing outside of that. It's a hundred mile roundtrip, so it really sucks to have such short visits.

I felt pretty good when I left him today, just knowing that he made it through that procedure all right without any complications. He had a sweet nurse today too, one that's been there a long time. That also eased my mind.

No matter what happens, it'll be all right.

Since: Jun 10

Topix

#34 Oct 4, 2012
Unusual and unexpected update:

When I got to the ICU this afternoon I was told that the nurses were cleaning Fess up and that somebody would come and get me when they were finished.

OMG, he was looking right at me and smiling when I went into his room. He was conscious, and the thoracentesis helped. I did my thing with pulling on one of his ear lobes and asking him if he wants that ear any longer, to which he nodded, so I pulled on it some more and he smiled real big. I talked a little bit and then I asked him if there was anything I could do, and he nodded his head.

Right away he tried to get his hands moving to help explain, but, of course, they're in restraints as he mouthed something that I couldn't make out. I asked him if it had one syllable, to which he nodded. When I asked him if it began with an "r" he nodded again. When I said, "rice?" his eyes got real big and he nodded, but then shook his head. "Rice" was it, but yet it wasn't, so I asked him if the nurses would understand what "rice" meant, to which he shook his head, and just lied there with his eyes closed.

I asked a nurse anyway if she might know what it meant, and she said that she didn't, and that he was trying to convey something to her earlier and acting pretty mad at her for not understanding. He wasn't mad acting with me, he just seemed to pretty much give up. That has to be so trying, and so tiring. Then the nurse came in and said that it was time for something to help him relax and asked him if he needed anything for pain too, to which he nodded.

After he dozed off for a little while, I'd said that I was going to leave and he opened his eyes, raised his head and looked at me. Something clicked with me then. I told him that I would try again to understand what he was trying to say that he needed if he wanted to give it another try. I got it right away then, and asked him if the word was "raise" instead of "rice", and if he wanted the head of his bed elevated. He was glad I got it, so I told the nurse and she came in and raised it up for him. She'd told me that he had a pretty good day today.

I stayed and talked while he opened his eyes off and on, and when I'd said that I was going home again, he opened his eyes, smiled, and nodded. I stuck around a few more minutes and he opened his eyes to see if I was still there and we both sort of got tickled.

Amazing.

Since: Jun 10

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#35 Oct 10, 2012
After looking better than I've ever seen him look, Monday, Fess wasn't feeling well at all yesterday. I'd gotten a call from the ICU doctor asking me whether he has seizures, or if I knew whether he'd ever been on any meds for seizures. I said that he doesn't, that he hadn't, and asked him, "why?". He'd said that he didn't witness it, but that a nurse had said that when he'd awakened today she'd thought that he'd had a seizure. I told the doc he never has, but that his arm and leg muscles sometimes jerk when he's asleep, probably from low oxygen, and that none of his doctors were concerned when I'd told them.

I was thinking that a seizure was probably indicative of his getting ready to try and head on out of here again, so I hopped in the car.

The nurse said how glad they were to find out that he does have seizures after all. I gave her a deadpan look and asked what she meant. She'd said that the doctor put it in his chart after talking to me. I told her, verbatim, what we'd said, told her to change it in Fess's chart and to tell me what had happened. She described through demonstration to me, and I'd said they'd better get with it and find out why he'd done that, as she backpeddled out of the room saying that maybe it wasn't actually in his chart, but that she'd go check and change it if it was.

Fess looked worn out, pale, and, although
conscious, his eyes were half closed with the whites showing and he had trouble focusing them. Huge difference from Monday.

I leaned in and told him that he didn't have to hang on if he was tiring of the fight and to let go if he wanted to. He'd mouthed to me, "How?" I told him that was a very good question, considering that he's hooked up to life support, but that I'd see what I could find out for him. He mouthed that he wanted a pen and paper, so I brought the clipboard over to his bed. With his hands so swollen, and in restraints, his printing is usually fairly illegible.

He wrote in cursive this time, clearly: "I'm ready for heaven". I'd asked him if he knew how he had ended up in the ICU on life support, he shook his head, and I asked if he'd like to hear the full account. He did, so I told him exactly how it all went down, starting from 9/27 through 9/29. I left nothing out, stopping along the way to ask if he was still listening and if he understood, to which he nodded his head each time. I talked a lot to him about things he'd said to said to me in the past, and how the first thing I'd asked him was if that was what he'd really wanted, and I told him that he'd nodded his head to me. I asked if he recalled that, and he shook his head. I asked him if he wanted to be removed from life support, and he nodded. I asked him when, and he mouthed to me, "Now", and mouthed, "I'm ready for heaven". He wanted me to tell someone.

The nurse said that he was probably just having a bad day. The pulmonolgist said that she needed to discuss it with him, alone, but that she doubted that he meant anything either, because she had just seen Fess earlier and told him that he was probably going to be getting an EEG today, and she said that he never said anything to her about it.(Good Lord.)

They wanted time alone with him, saying they'd get me later on and we could all discuss things with him. Two hours passed, and I discovered as no surprise that they'd found out exactly what I'd conveyed to them on Fess's behalf.

I told his pulmonologist that he had wanted to hear from a doctor a while back, rather than from me, only, how a death from COPD occurs, and I asked her to please explain to him what removal from the machines would be like.(These people are supposed to be professionals!) When I asked Fess if he was interested in involving hospice now, he was.

This was late afternoon, after business hours. The doctor asked Fess if he could wait until tomorrow.(Uh, naturally, he nodded.) She said they'd contact hospice and the hospital ethics department at 10-11am today.

Since: Jun 10

Topix

#36 Oct 10, 2012
Correction: He'd said that he didn't witness it, but that a nurse had said that when he'd awakened YESTERDAY she'd thought that he'd had a seizure.
(Most of that was copied from an email to his sister.)

Y'all have a good day.
Bill-y

Boone, NC

#37 Oct 11, 2012
hourglass,

I haven't been on computer much lately but please know that I am still with the both of you in mind and spirit. Much love to the both of you and will be checking in daily.
Most Awesomely Coolest that Fess is clear-headed and in good spirits.
Love to the both of you!

Billy

Since: Jun 10

Topix

#38 Oct 11, 2012
Bill-y wrote:
hourglass,
I haven't been on computer much lately but please know that I am still with the both of you in mind and spirit. Much love to the both of you and will be checking in daily.
Most Awesomely Coolest that Fess is clear-headed and in good spirits.
Love to the both of you!
Billy
Thank you, sugar. Love back at ya. I got in about a 1 1/2 hours ago. I'm in the middle of some stuff and have emails to reply to. When I develop more time, I'd like to share on here how wonderfully Fess exited the planet earth, just as he'd seen fit, "his way", 28 1/2 hours after being removed from life support, at 4:36pm today. He didn't need hospice's services (neither did I) and we could have stayed in the hospital room he'd been moved to out of the ICU, but I'm so glad that we went to a hospice house anyway. I was so comfy next to him in his bed in such an inviting atmosphere like a fancy schmancy hotel. I was so relaxed throughout his amazing and impressive journey. What a guy. My hope is that maybe through sharing his experience, anyone who has, or knows someone with, chronic obstructive pulmonary disease can perhaps receive some peace in knowing that they won't necessarily suffocate at the end.(I think it's so cool that his date of death is 10-11-12)

You take care, Billy. I'll return at another time before long. Right now, I'm so happy. No tears, only rejoicing.
Bill-y

Boone, NC

#39 Oct 12, 2012
hourglass,

I have carefully considered my response to Fess's passing.
I have always thought that a death calls for rejoicing,not grief. The grief is for the people left behind's benefit,the deceased is taking the next higher step to a better place. I rejoice for Fess.
Most Awesomely Coolest,Fess,procede with a smile on your face;acceptance and happiness in your heart.
Me be here when you need me hourglass. Take Care,luv.

Billy

Since: Jun 10

Topix

#40 Oct 12, 2012
Bill-y wrote:
hourglass,
I have carefully considered my response to Fess's passing.
I have always thought that a death calls for rejoicing,not grief. The grief is for the people left behind's benefit,the deceased is taking the next higher step to a better place. I rejoice for Fess.
Most Awesomely Coolest,Fess,procede with a smile on your face;acceptance and happiness in your heart.
Me be here when you need me hourglass. Take Care,luv.
Billy
Thanks so much. Three of his family members have been messing me up good with their behaviors so my happiness was quickly robbed from me. I think they're just plain evil. I do.

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