I just saw a link to this article on FB. Holy hell. With the exception of actually divorcing Dan, this is me, this was us. Some pieces are so right on that it's eerie. I'm floored at the similarities.
Oddly, I found it comforting to know that her husband died within 19 days of being given the diagnosis of alcoholic hepatitis. I've been too busy to research it, and honestly it never occurred to me to research it, but I'm now curious what the recovery rate is for this form of hepatitis.
Alcoholic hepatitis was actually the 2nd diagnosis listed on Dan's death certificate. Dan's death certificate. How strange to say that. I actually only looked at it on the way to the Celebration of Life for him, not quite 2 weeks ago. I had picked up the copies and was taking them to his brother so that he can close his estate. In a state of denial of course, I looked at it. And it felt like I'd been hit by a truck. Date of Death. How does he even have a "date of death?" And my heart sank when I saw his marital status listed as divorced. It somehow seems nicer to me to die married. I know I know. Completely illogical. And at the bottom were the diagnoses. I wasn't expecting that, as I'd only seen one other death cert and that was his moms. The first was hepatorenal syndrome, which basically means that your liver shuts down your kidneys, and then your kidneys get so bad that there's no possible way for your liver to improve. It was mentioned to me several times in the hospital, but no one ever confirmed. It's a dx of exclusion, so basically you rule everything else out and that's what you end of up with. The 2nd dx was alcoholic hepatitis.
http://opinionator.blogs.nytimes.com/2015/05/27/surviving-an-alcoholic/?rref=opinion&module=Ribbon&version=context®ion=Header&action=click&contentCollection=Opinion&pgtype=Blogs&_r=0
"Robert’s addiction caused chaos in our marriage, our happily-ever-after
days got hijacked at the bar, revealing the ugly underbelly of our often
admired marriage. The others in the group had been looking forward to
their futures, whereas I worried about fresh troubles each day. While
they felt the loss of a partner, I’d lost Robert long ago to a
never-ending drink of Scotch. They saw their lives as bleak and empty;
I’d found some peace and comfort.
Transformed from wife to detective, I began kissing for the sake of
sniffing, snooping for receipts to see how much liquor he bought and how
often, discovering hidden trash bags full of empty bottles. The
confrontations escalated, initiated by me. I was outraged by Robert’s
denial and disregard; yet protective and heartbroken, wanting to save
him from himself."
I want to post this on FB. I want to scream it from the mountain tops but I won't. Because it doesn't need to be done. It would be me, admitting that Dan was an alcoholic, to the world. I'm not ready for that; not sure I would EVER be ready for that. He deserves his privacy re: this issue, at least now. And admittedly, I don't want to tarnish any thoughts of him that others might have. Ever the enabler I suppose, but at this point, I'm ok with that.
Thursday, May 28, 2015
Wednesday, May 27, 2015
talked with the neighbors
J and I went yesterday to get D's car from his condo. I knew it had a flat tire, but the battery was also dead. While J was fixing that, a neighbor came by walking her dog and asked "is that Dan?" in regards to J. His back was facing her at the time. My voice just caught in my throat as she walked closer. I somehow managed to get out "no, it's not Dan. He passed away." By then, J had turned around and was right next to me.
I learned that she was the neighbor who called 911 for him. She's also a nurse. She started talking, and I started crying and she stopped. J told her to keep talking, because I wanted to know, and then he walked away. She looked at me and said "he loved you. He did. He talked about you all the time, and he LOVED those kids." And...I lost it. He couldn't remember my phone number, and had told her that me and the kids were his only family. Clearly, neither one thought to look for my number in his phone, which he had with him.
I cannot TELL you the relief I felt to hear her say she was with him that morning. Her voice was so calm and soothing and I'm sure that was comforting to him. And to just know that he wasn't alone. I mean, I knew he wasn't, but she had his best interests in mind. She seemed to be an angel to me. I am just so glad he wasn't alone, and he knew that someone cared.
Her story was very consistent with the story I'd heard from the dr. Another neighbor found him that morning, and then called her (Shannon), to come take a look at him, since she's a nurse. She told me that he was completely coherent, and oriented x 3. And also very very jaundiced already. He told her that he thought he'd had a seizure the night before, in the parking lot, and he fell. She said he had a spot on his forehead and side of his head that was consistent with a fall. He told her he'd been too weak to get inside so crawled in his car for the night. She said the smell of alcohol was heavy on his breath, and that was probably 12 hours without anything to drink. She said he apologized to her for soiling himself. He told Ron that he'd come down to check on his car battery and that he hadn't been out of his condo in 3 days. He fought them on calling 911, said that he just wanted to go back upstairs. She and the other neighbor (Ron) fought right back and called anyway.
She said that he gave her permission to list her name/number as a person to contact. She said that she called him and talked to him while he was in the hospital. he told her he was being transferred to a larger hospital that had the equipment they needed to treat him. He thought he was going to BJC (would have been his preference), but instead he was taken to SLU. She did not know this, so once he was transferred both she and Ron called the area hospitals trying to find him, but they had no luck. Ron tried to track me down, but couldn't remember my first name. They both said they'd tried to figure out how to get in his condo to find contact information from me. After we left, I realized that they could have just went and opened his door, knowing now that he had left it unlocked.
Once she left, I just walked over and collapsed on his car door. I was completely drained and really felt like I'd been hit by a truck. We did exchange phone numbers and she made it clear she was happy to talk with me again. I definitely want to. It was so helpful to talk to her.
Not only do I now know he was in good hands, but I know that he had no ill-will toward me that day. No mention of "don't you dare call Stacey. I don't want her to know." I never thought that was the case, but it had crossed my mind. But it made me feel so much better to know that he talked about me in a positive light. Not for my own selfishness or self-esteem, but simply to know that he still thought, after all that had happened, that I was a good person, and one that he could count on. I made comments in an earlier post that maybe he would have just told me to get the hell away had I shown up at the hospital. I now know that wouldn't have happened, and am grateful for that knowledge, but now I feel so sad that if I had known, he most likely would have welcomed me. I think, simply, that he was very sick. After we talked, and I admitted to his alcoholism, Shannon even said "I bet he just wanted to get back upstairs so it would end there." And I can see that. What I realized later that day was that he had SEEN himself jaundiced. It was very evident to Shannon and Ron, so he HAD to see it when he looked in the mirror. He had to know what was happening, if not immediately, then soon. And I wonder what he thought about that. Did it scare him? Did it worry him? Did it bring relief? Did he even process what was happening?
I learned that she was the neighbor who called 911 for him. She's also a nurse. She started talking, and I started crying and she stopped. J told her to keep talking, because I wanted to know, and then he walked away. She looked at me and said "he loved you. He did. He talked about you all the time, and he LOVED those kids." And...I lost it. He couldn't remember my phone number, and had told her that me and the kids were his only family. Clearly, neither one thought to look for my number in his phone, which he had with him.
I cannot TELL you the relief I felt to hear her say she was with him that morning. Her voice was so calm and soothing and I'm sure that was comforting to him. And to just know that he wasn't alone. I mean, I knew he wasn't, but she had his best interests in mind. She seemed to be an angel to me. I am just so glad he wasn't alone, and he knew that someone cared.
Her story was very consistent with the story I'd heard from the dr. Another neighbor found him that morning, and then called her (Shannon), to come take a look at him, since she's a nurse. She told me that he was completely coherent, and oriented x 3. And also very very jaundiced already. He told her that he thought he'd had a seizure the night before, in the parking lot, and he fell. She said he had a spot on his forehead and side of his head that was consistent with a fall. He told her he'd been too weak to get inside so crawled in his car for the night. She said the smell of alcohol was heavy on his breath, and that was probably 12 hours without anything to drink. She said he apologized to her for soiling himself. He told Ron that he'd come down to check on his car battery and that he hadn't been out of his condo in 3 days. He fought them on calling 911, said that he just wanted to go back upstairs. She and the other neighbor (Ron) fought right back and called anyway.
She said that he gave her permission to list her name/number as a person to contact. She said that she called him and talked to him while he was in the hospital. he told her he was being transferred to a larger hospital that had the equipment they needed to treat him. He thought he was going to BJC (would have been his preference), but instead he was taken to SLU. She did not know this, so once he was transferred both she and Ron called the area hospitals trying to find him, but they had no luck. Ron tried to track me down, but couldn't remember my first name. They both said they'd tried to figure out how to get in his condo to find contact information from me. After we left, I realized that they could have just went and opened his door, knowing now that he had left it unlocked.
Once she left, I just walked over and collapsed on his car door. I was completely drained and really felt like I'd been hit by a truck. We did exchange phone numbers and she made it clear she was happy to talk with me again. I definitely want to. It was so helpful to talk to her.
Not only do I now know he was in good hands, but I know that he had no ill-will toward me that day. No mention of "don't you dare call Stacey. I don't want her to know." I never thought that was the case, but it had crossed my mind. But it made me feel so much better to know that he talked about me in a positive light. Not for my own selfishness or self-esteem, but simply to know that he still thought, after all that had happened, that I was a good person, and one that he could count on. I made comments in an earlier post that maybe he would have just told me to get the hell away had I shown up at the hospital. I now know that wouldn't have happened, and am grateful for that knowledge, but now I feel so sad that if I had known, he most likely would have welcomed me. I think, simply, that he was very sick. After we talked, and I admitted to his alcoholism, Shannon even said "I bet he just wanted to get back upstairs so it would end there." And I can see that. What I realized later that day was that he had SEEN himself jaundiced. It was very evident to Shannon and Ron, so he HAD to see it when he looked in the mirror. He had to know what was happening, if not immediately, then soon. And I wonder what he thought about that. Did it scare him? Did it worry him? Did it bring relief? Did he even process what was happening?
Wednesday, May 13, 2015
Regret
This has been bugging me, and it works its way into my thoughts daily. I don't necessarily feel guilt, for anything really. But I do feel regret. For not knowing he was in the hospital for so long. I know that was completely out of my control and there was absolutely nothing I could have done about it, but the scenarios I've played out in my head, had I known...well I just wish I'd known.
Was he lonely during that time? Was he even alert? Aside from the day the dr called to tell me he was headed to the ICU, I never really talked to anyone about what happened during those first 10 days.
I could have visited. Maybe not daily, but I could have stopped by to let him know someone cared. It's very possible he didn't want anyone there, even me, maybe even ESPECIALLY me, and I get that. I'm sure there was a phone in his room. I'm sure at some point he was cognizant enough that he could have reached out if he'd wanted, or had a nurse call. But maybe not. The encephalopathy caused by the hepatitis left him very confused.
I could have taken the kids to see him. They could have seen him ALIVE. They could have said goodbye. Maybe seeing them would have given him incentive to fight and to try to get better. But, was that already a losing battle anyway? He deteriorated while in the hospital. I suppose he was heading for death, regardless of his possible motivation to change his behaviors.
We could have talked. Well, I could have talked. Getting Dan to talk on a GOOD day was almost impossible. But yes, I could have talked. I could have looked him in the eye and TALKED to him and known that he heard me. Selfish? Maybe, but I think I earned it. I would have told him the same things I told him while he was in the ICU but maybe he would have responded. Maybe he would have told me to get the hell away and not come back, or maybe he would have told me that he loved me too.
I don't regret anything about making the final decision that led to him moving out. I knew that, despite so many telling me I'd gone above and beyond, that I wasn't ready to throw in the towel. It wasn't time, until it was. And I can look back at that time and feel not good, but at least content that I'd tried everything I knew to try, and had essentially run out of options.
Same thing with moving from separation to divorce. I don't regret the timing of it. I was content for quite awhile and saw no good reason to move quickly so I didn't. Until I met Justin, and knew that I was ready to move forward. And my meeting Justin, encouraged some bad behavior from Dan, which made me realize that was the right time to move towards divorce. If I hadn't met anyone, maybe we'll still just be separated. Or maybe not. But regardless, I don't regret it.
But not getting to spend more time with him in his last few weeks, I regret it so much that it hurts. To not have had the opportunity to what, I don't know. But I didn't have it, so we'll never know. And no, I don't think that I could have miraculously turned him around during that time. But we could have said our peace. Or I could have, at least one last time. And I did get to...I just wish it had been when he had the opportunity to respond.
Was he lonely during that time? Was he even alert? Aside from the day the dr called to tell me he was headed to the ICU, I never really talked to anyone about what happened during those first 10 days.
I could have visited. Maybe not daily, but I could have stopped by to let him know someone cared. It's very possible he didn't want anyone there, even me, maybe even ESPECIALLY me, and I get that. I'm sure there was a phone in his room. I'm sure at some point he was cognizant enough that he could have reached out if he'd wanted, or had a nurse call. But maybe not. The encephalopathy caused by the hepatitis left him very confused.
I could have taken the kids to see him. They could have seen him ALIVE. They could have said goodbye. Maybe seeing them would have given him incentive to fight and to try to get better. But, was that already a losing battle anyway? He deteriorated while in the hospital. I suppose he was heading for death, regardless of his possible motivation to change his behaviors.
We could have talked. Well, I could have talked. Getting Dan to talk on a GOOD day was almost impossible. But yes, I could have talked. I could have looked him in the eye and TALKED to him and known that he heard me. Selfish? Maybe, but I think I earned it. I would have told him the same things I told him while he was in the ICU but maybe he would have responded. Maybe he would have told me to get the hell away and not come back, or maybe he would have told me that he loved me too.
I don't regret anything about making the final decision that led to him moving out. I knew that, despite so many telling me I'd gone above and beyond, that I wasn't ready to throw in the towel. It wasn't time, until it was. And I can look back at that time and feel not good, but at least content that I'd tried everything I knew to try, and had essentially run out of options.
Same thing with moving from separation to divorce. I don't regret the timing of it. I was content for quite awhile and saw no good reason to move quickly so I didn't. Until I met Justin, and knew that I was ready to move forward. And my meeting Justin, encouraged some bad behavior from Dan, which made me realize that was the right time to move towards divorce. If I hadn't met anyone, maybe we'll still just be separated. Or maybe not. But regardless, I don't regret it.
But not getting to spend more time with him in his last few weeks, I regret it so much that it hurts. To not have had the opportunity to what, I don't know. But I didn't have it, so we'll never know. And no, I don't think that I could have miraculously turned him around during that time. But we could have said our peace. Or I could have, at least one last time. And I did get to...I just wish it had been when he had the opportunity to respond.
sad
Blah, things are moving along, away from the day he died, and then BAM something slams into me, or one of my kids and it takes me back there, and back to him in general.
Last night, S mentioned that for my birthday on Sunday we should go out to dinner. I told her that was a great idea, as long as I got to pick, since it was MY bday. She (thankfully!) agreed, and then said "and when it's Father's Day, Justin can pick where HE wants to go." And then she moved on to the twins b-day and then to hers. But my head, and heart, were stuck on the comment she made about J.
How can she easily forget D? How? I played out different scenarios in my head about what she meant. I *hope,*although realize it's most likely not the case, that she said that about J simply because he's a father, not because she was not thinking about her own.
I mentioned it to him last night and he said that C and S have seemed to seek him out more since D died. A always has--they're most definitely buds and have been from the start, but there's been a change with the other two, especially S. He said maybe they've transferred their feelings about Dan to Justin. And I lost it. Although it may be true, and ultimately what I knew would happen, it's not even been three weeks.
It's not fair to Dan that they are doing this. He was their dad. IS their dad. God damn this just breaks my heart. And why in the HELL is this bothering me so much, after he put me through so much. He's their DAD. And while he was alive the possibility of being a good dad was always there. Now that he's not though, my children, HIS children, are ready to forget him.
I know this is healthy. I just didn't expect it to happen so quickly. And, at the same time as S is making this "transition" to J, she's having a lot of somatic complaints that I realized last night are from her grief. At school the last two days her teacher told me she's been VERY quiet, and also for the past few days she's been complaining of stomach aches and headaches. Physically, there's no good reason (and I see no evidence to the contrary) that she would have these. It's her little heads way of processing. Two nights ago she asked me to hold her and she wrapped her self up really tight in her blanket and just cuddled with me. This is not S lol. And then last night, she was tearful for the better part of an hour because her had and belly hurt.
I realized last night that the twins will not remember Dan. Nothing concrete anyway. Nothing other than "he is ashes." I'm so glad I took as many pictures as I did, although now it doesn't seem nearly enough.
Last night, S mentioned that for my birthday on Sunday we should go out to dinner. I told her that was a great idea, as long as I got to pick, since it was MY bday. She (thankfully!) agreed, and then said "and when it's Father's Day, Justin can pick where HE wants to go." And then she moved on to the twins b-day and then to hers. But my head, and heart, were stuck on the comment she made about J.
How can she easily forget D? How? I played out different scenarios in my head about what she meant. I *hope,*although realize it's most likely not the case, that she said that about J simply because he's a father, not because she was not thinking about her own.
I mentioned it to him last night and he said that C and S have seemed to seek him out more since D died. A always has--they're most definitely buds and have been from the start, but there's been a change with the other two, especially S. He said maybe they've transferred their feelings about Dan to Justin. And I lost it. Although it may be true, and ultimately what I knew would happen, it's not even been three weeks.
It's not fair to Dan that they are doing this. He was their dad. IS their dad. God damn this just breaks my heart. And why in the HELL is this bothering me so much, after he put me through so much. He's their DAD. And while he was alive the possibility of being a good dad was always there. Now that he's not though, my children, HIS children, are ready to forget him.
I know this is healthy. I just didn't expect it to happen so quickly. And, at the same time as S is making this "transition" to J, she's having a lot of somatic complaints that I realized last night are from her grief. At school the last two days her teacher told me she's been VERY quiet, and also for the past few days she's been complaining of stomach aches and headaches. Physically, there's no good reason (and I see no evidence to the contrary) that she would have these. It's her little heads way of processing. Two nights ago she asked me to hold her and she wrapped her self up really tight in her blanket and just cuddled with me. This is not S lol. And then last night, she was tearful for the better part of an hour because her had and belly hurt.
I realized last night that the twins will not remember Dan. Nothing concrete anyway. Nothing other than "he is ashes." I'm so glad I took as many pictures as I did, although now it doesn't seem nearly enough.
Thursday, May 7, 2015
April 16
I've been avoiding this post. But I'm feeling completely surrounded by D this morning, like he's all around me, so I may as well just dive in and do this.
April 16 started at 3:30 am with a call from the ICU dr. They had strict instructions to call me with any negative status changes so of course when I heard the phone, I assumed the worst. I sat up in bed, Justin right after me, just holding me and rubbing my back. i hadn't even answered the phone yet and I was already cursing myself for leaving him alone that night. The dr told me that Dan's hemoglobin levels had dropped and he suggested a transfusion. A what? In the past 5 days we had never discussed this. This was also not Dr. P, but an ICU resident. At 3:30 that morning, I'm not sure where the clarity came from to ask questions, reasonable questions, not emotionally distraught ones.
Knowing with almost 100% certainty that life support would be turned off soon, it didn't make sense to me to give a transfusion. In my mind, it just didn't make sense, but then there was still the teeny tiny "what if" in the back of my mind. And, the question kept floating around in my head, but my mouth wouldn't speak it "if we are turning off life support, is this procedure necessary??" At 3:30 am, with just minutes to make a decision, it didn't seem like a reasonable solution. I also had the clarity to let the dr know I needed to talk to Mike before making the decision. I assumed he'd be on the same page and want me to say no. I wasn't going to battle him on this one. I knew in my heart it wouldn't help.
I called him and he didn't answer, but called back just a few minutes later. I relayed my discussion with the dr. Mike said what do you want to do? We'll let them do the transfusion, right?
What the what? This was Mike. Ever practical and realistic, holding on to the very last shred of hope to save his brother. After him letting me make all the calls up til now, of course I was going to let him have this one, and I never let on that I would have been ok with NOT doing it. Looking back thought, I am SO glad we did it. It certainly didn't hurt anything, and if we hadn't, I would have always wondered. So I called the dr back to give him the ok, and then had to follow procedure of talking to two other "witnesses" since I was agreeing via phone.
Just another grey area surrounding DNR. We never talked about transfusions. About if a few pints of blood might save his life, would he want it.
This was playing on the radio on my way to the hospital to see him that morning. I was trying hard to get there in time to hear the drs rounding on him. This song has reminded me of him for years. YEARS. "Do you still feel the pain of the scars that won't heal." I always knew it would have significant meaning to me. Always. And here it was. My head was in denial though. I thought "is this the day he will die?" And then "no way. It's not happening today. Dr. P said that it would take a few days. This might be the beginning of the end, but today is not the end."
Once I arrived, I learned that there was not much change, except for the transfusion, which had gone as planned. His creatinine levels continued to slowly rise.
Dr. P came and talked to me. We talked about the transfusion. He apologized for the entire situation. He told me that he hadn't discussed the possibility of a transfusion because he didn't think it would ever come in to play. He said if he had been working, he would never have called me. He said that while he completely understood why I had agreed to it, that going forward he would suggest no more transfusions, as it was an effort in futility.
And then he dove into the topic of the day. That there was nothing more we could do for Dan. That we needed to focus on him being comfortable, and begin/continue the conversation re: his wishes and where he was now. He assured me that once the time came, he would be in no pain. They would give him meds ever 5 minutes if needed, but he would not suffer. And there it was again, me all alone, against this dr. I knew he wasn't against me. I knew he was speaking the truth. But, how was this my life? How? how was *I* the person responsible for basically killing someone else. For making the decision to take my children's father away from them. It was me. And honestly, I didn't mind the responsibility itself. In my heart (and head) I knew that I was the only one that Dan would want making these decisions. It made sense, and I was happy to take that on for him, but it was more of a "I'm 40 fucking years old and faced with this decision. HOW?"
So I sobbed. And sobbed. And sobbed. And Dr P just stood there rubbing my back. The nurses were crying too. On the 2nd day in ICU, he'd been moved to a medical ICU floor, from the Neuro ICU floor he'd been on. ALthough I had tunnel vision in those few days, it seemed like the majority of the patients were older, some with few if any visitors. Dan was 45, with a picture of his 3 little kids next to him. With flowers that Sophie had picked on that Sat when I first got the call in a baggie resting on his chest. With a rosary that a friend's little boy had made next to his head. With a Blues pin attached to his hospital gown. This was someone who had the WORLD to live for. The FUCKING WORLD and he was incapacitated in the ICU with his liver and kidneys failing and god only knows what going on in his bowels. These were hanging in his room. It was just so SO appropriate for him. And the funny thing? I had brought them on the 15th. I sat up in bed that morning and said "Where's his fucking marine flag? I think it's in the garage." I knew that if he was going out, he'd do it surrounded by things he loved. I stumbled out of bed and Justin stopped me and said "no, I'll get them." I told him he didn't know where to look, but yet he came back with these 4 items that just about summed Dan up better than anything else could. We had made him a person, not a patient, and the nurses couldn't stop their own tears.
Dr P left me alone and M, C and H showed up soon after. I briefly discussed my convo with Dr P, and then Mike asked if I wanted to talk alone. We went out into the hallway, where he once again told me he was on my side and would agree to whatever I needed. He also told me he was ready to remove Dan from life support as soon as I gave the ok. He wasn't pushing; I never felt like he pushed me into anything, or tried to change my mind about a decision I'd made. I told him that I was almost ready, but that the closer it got to that point, the harder it was.
I went back in the room and sat next to Dan again, and grabbed his hand and just cried. I didn't know it was possible for someone to cry so much. More bloodwork was done; labs came back. There was either no change, or change in a negative direction. Dr P came in again and talked with us, mostly to Mike as he had not been there for our earlier conversation. I listened. I cried more. Mike told the dr to give us a few more hours.
He came back in about 1:30 I think. Suddenly, it was just me and Dr P and Mike in the room. We revisited the same stuff, me sitting next to Dan, the Dr. standing across from me. Mike at the foot of the bed. Dr P again brought up his DNR status. Telling me again he could live indefinitely in the state he was. He told me that he'd seen patients, once life support was removed live for days, and others (who he expected to survive for quite a while), die almost instantly. There was no predicting what might happen. He reminded me that they'd make Dan comfortable, giving him Morphine around the clock, if that was necessary.
In my head, I was almost there. I looked at him and knew that he wouldn't want to be this way. I joked that he was mother fucking me as we sat there, knowing that I'd put him in this situation. I knew it was the right thing to do. I knew I had a family to take care of, and job to not get fired from. I needed to take care of his children. But yet, there was their dad, and I was faced with this god awful decision.
I looked at Dr P and said "I know you've said it before, but please tell me again. There's no way he can get better." He came over and knelt beside me. On his hand, he ticked things off as he mentioned them. His infection. Possible issues with his bowels. He's bleeding somewhere we can't pinpoint. His liver. At this point he mentioned that Dan was not a candidate for a liver transplant. This was not the first discussion about this. Anytime ANYONE made this comment, I quickly followed up with "he wouldn't WANT a new one." This time, Mike chimed in "and let's face it, there are so many others that should be in line before him." I shot him the look of death and just told him to shut up, which he did. Dr P continued. His kidneys. They'd tried what they could. They'd hoped they could pull him through. They couldn't.
I think I just shook my head up and down. I think I might have said "ok." Someone confirmed with me that I was ready. I was. The dr left to set things in motion. Mike left me alone. I felt like I'd been kicked in the gut over and over and over. Finally, every was back in the room. Mike had briefed them. A few minutes later, Dr P and the two nurses came back in. The gave him a shot of morphine right away. This was really the beginning of the end. Dr P told everyone to go to the waiting room. I knew this was expected of me, but I couldn't go. There was no way I was leaving him at that point. Dr P knew there was no arguing with me. He'd already warned me of what might happen after extubation, some coughing, sounds of choking as the tube was being pulled out. I was ok with that. I was just not going to leave him. They did make me move to a chair in the corner of the room.
I remember looking at the clock. He was extubated very close to 2:15. There was no coughing. No choking sounds. It went as well as it could I suppose. I remember looking for non-verbals between Dr P and the nurses, trying to figure out if it was going as planned. His eyes opened, and stayed fixed. Much like you would expect of someone who was already dead. I remember thinking this. I remember thinking that maybe we should shut his eyelids. I also remember thinking that this was the last time I'd be able to see his eyes and it didn't matter to me how he looked. He was making a gurgling sound in his throat. I've read about this since then, commonly known as a "death rattle." I had heard this phrase before, but didn't realize that it meant that death was immiment.
M, C and H came back in. Mike immediately commented on his eyes---they were making him uncomfortable, so the nurse closed them. I remember being pissed about this. The gurgling noise was upsetting C (it DID sound horrible), and the nurse just explained it away as normal in the state he was in.
The nurse turned off the monitor that was tracking his heart, lungs, etc. I asked her to turn them back on. She seemed shocked and told me she could monitor him at the nurses station. Luckily, H chimed in that she'd like to see them too, and so the monitor was turned back on.
I was next to him again, C right behind me with her hands on my shoulders. H was across from me, on Dan's other side. Mike was pacing.
I first noticed his heart rate. Big spikes then flat, big spikes then flat. I kept looking from the monitor to him. Back and forth back and forth. I was holding his hand with both of mine. I kept looking at his chest. He was still breathing. And then I looked at the monitor and his respirations said 0. I remember saying what the hell, he's not breathing. C said "oh I think he is, just not enough to be picked up by the monitor." I didn't believe her. I looked across at H, who although not a dr may as well be. She looked confused. What in the fuck was going on. His respirations were 0. His heart rate was flat. But the other monitor, can't remember what it was, something was still "there." At this point, I didn't realize I had completely latched on to his forearm and I was moving him a bit, which was keeping something "going" on the screen. H told me to let go of him, which I did, and everything went flat. H said "he's gone. I think he's gone." C was in denial. She said no. I said "yes, he's done. That's it. He's done."
It had taken 20 minutes. That was it. He was ready. His body was ready. I found out after the fact, that immediately after extubation, his lungs were already down to 30%. One of the two organs that we didn't think were failing him, clearly did.
The dr came in about 10 minutes later. He checked his heart and his pulse and looked over at me and whispered "He's gone. I'm so sorry." I said "you said it might take 48 hours." In my head, I had planned on that time. I hadn't expected my time with him to be ripped so short. He just apologized and said there was no way to predict, which my head knew, but my heart wasn't happy with.
The chaplain came in and offered a nice prayer. He asked where "the body" needed to be transported to. I let Mike deal with that. Dan was officially "a body" but yet I hadn't stopped holding his hand. We stayed for close to an hour, I think, getting a plan together for the rest of the day. Finally, everyone started packing things up. Putting the kids pictures away. Taking the things that had been surrounding him. The jerseys came down. The shoes he was wearing the day he was admitted came out of the drawer. "Do you want them?" I wasn't sure, but I wasn't ready to leave them. Leaving him was enough. The shoes are still in the trunk of my car.
C and H left with the bags. I walked out so M could have his time with Dan. When he was done, he told me to take as much time as I needed. I stayed for another 10 minutes I guess. I kissed him. I rubbed his head. It was already getting cold. I told him that I loved him. That I'd always loved him, and that I'd love him forever. I told him I would take care of our children. I told him that he should never worry about that. I told him I was so sorry that I had to leave him there. That I was so sorry that I couldn't save him, as I had promised his mom in the letter I wrote to her after she had died.
And then I left him.
We'd all made a plan to meet for a drink, to serve as a "transition" for me between leaving the hospital and picking up my kids. I already had a friend ready to babysit, as I had expected to be spending the night in the hospital, so we all planned to meet at one of his favorite restaurants after I got the kids home.
It was nice. It was as he would have wanted. It was me, C, H and her husband and Mike. Around 8, J sent me a text trying to find out where I was. I told him I was finishing a beer, so he came to meet us. I have never been so happy to see him. I saw him walking through the restaurant trying to find our table. Once M saw him, he popped out of the booth so J could sit down. He just grabbed me and held me and there I was sobbing again. Nothing could take my pain away, but him being there helped to "steady" me. I knew he'd take care of me. And he did. And he once again made a potentially awkward situation normal. There he was, sitting with Dan's brother and cousin (whom he'd never met), and it didn't phase him. Thank God for him, that's all I can say.
I'm exhausted. There's more to say, but need to do it another time.
April 16 started at 3:30 am with a call from the ICU dr. They had strict instructions to call me with any negative status changes so of course when I heard the phone, I assumed the worst. I sat up in bed, Justin right after me, just holding me and rubbing my back. i hadn't even answered the phone yet and I was already cursing myself for leaving him alone that night. The dr told me that Dan's hemoglobin levels had dropped and he suggested a transfusion. A what? In the past 5 days we had never discussed this. This was also not Dr. P, but an ICU resident. At 3:30 that morning, I'm not sure where the clarity came from to ask questions, reasonable questions, not emotionally distraught ones.
Knowing with almost 100% certainty that life support would be turned off soon, it didn't make sense to me to give a transfusion. In my mind, it just didn't make sense, but then there was still the teeny tiny "what if" in the back of my mind. And, the question kept floating around in my head, but my mouth wouldn't speak it "if we are turning off life support, is this procedure necessary??" At 3:30 am, with just minutes to make a decision, it didn't seem like a reasonable solution. I also had the clarity to let the dr know I needed to talk to Mike before making the decision. I assumed he'd be on the same page and want me to say no. I wasn't going to battle him on this one. I knew in my heart it wouldn't help.
I called him and he didn't answer, but called back just a few minutes later. I relayed my discussion with the dr. Mike said what do you want to do? We'll let them do the transfusion, right?
What the what? This was Mike. Ever practical and realistic, holding on to the very last shred of hope to save his brother. After him letting me make all the calls up til now, of course I was going to let him have this one, and I never let on that I would have been ok with NOT doing it. Looking back thought, I am SO glad we did it. It certainly didn't hurt anything, and if we hadn't, I would have always wondered. So I called the dr back to give him the ok, and then had to follow procedure of talking to two other "witnesses" since I was agreeing via phone.
Just another grey area surrounding DNR. We never talked about transfusions. About if a few pints of blood might save his life, would he want it.
This was playing on the radio on my way to the hospital to see him that morning. I was trying hard to get there in time to hear the drs rounding on him. This song has reminded me of him for years. YEARS. "Do you still feel the pain of the scars that won't heal." I always knew it would have significant meaning to me. Always. And here it was. My head was in denial though. I thought "is this the day he will die?" And then "no way. It's not happening today. Dr. P said that it would take a few days. This might be the beginning of the end, but today is not the end."
Once I arrived, I learned that there was not much change, except for the transfusion, which had gone as planned. His creatinine levels continued to slowly rise.
Dr. P came and talked to me. We talked about the transfusion. He apologized for the entire situation. He told me that he hadn't discussed the possibility of a transfusion because he didn't think it would ever come in to play. He said if he had been working, he would never have called me. He said that while he completely understood why I had agreed to it, that going forward he would suggest no more transfusions, as it was an effort in futility.
And then he dove into the topic of the day. That there was nothing more we could do for Dan. That we needed to focus on him being comfortable, and begin/continue the conversation re: his wishes and where he was now. He assured me that once the time came, he would be in no pain. They would give him meds ever 5 minutes if needed, but he would not suffer. And there it was again, me all alone, against this dr. I knew he wasn't against me. I knew he was speaking the truth. But, how was this my life? How? how was *I* the person responsible for basically killing someone else. For making the decision to take my children's father away from them. It was me. And honestly, I didn't mind the responsibility itself. In my heart (and head) I knew that I was the only one that Dan would want making these decisions. It made sense, and I was happy to take that on for him, but it was more of a "I'm 40 fucking years old and faced with this decision. HOW?"
So I sobbed. And sobbed. And sobbed. And Dr P just stood there rubbing my back. The nurses were crying too. On the 2nd day in ICU, he'd been moved to a medical ICU floor, from the Neuro ICU floor he'd been on. ALthough I had tunnel vision in those few days, it seemed like the majority of the patients were older, some with few if any visitors. Dan was 45, with a picture of his 3 little kids next to him. With flowers that Sophie had picked on that Sat when I first got the call in a baggie resting on his chest. With a rosary that a friend's little boy had made next to his head. With a Blues pin attached to his hospital gown. This was someone who had the WORLD to live for. The FUCKING WORLD and he was incapacitated in the ICU with his liver and kidneys failing and god only knows what going on in his bowels. These were hanging in his room. It was just so SO appropriate for him. And the funny thing? I had brought them on the 15th. I sat up in bed that morning and said "Where's his fucking marine flag? I think it's in the garage." I knew that if he was going out, he'd do it surrounded by things he loved. I stumbled out of bed and Justin stopped me and said "no, I'll get them." I told him he didn't know where to look, but yet he came back with these 4 items that just about summed Dan up better than anything else could. We had made him a person, not a patient, and the nurses couldn't stop their own tears.
Dr P left me alone and M, C and H showed up soon after. I briefly discussed my convo with Dr P, and then Mike asked if I wanted to talk alone. We went out into the hallway, where he once again told me he was on my side and would agree to whatever I needed. He also told me he was ready to remove Dan from life support as soon as I gave the ok. He wasn't pushing; I never felt like he pushed me into anything, or tried to change my mind about a decision I'd made. I told him that I was almost ready, but that the closer it got to that point, the harder it was.
I went back in the room and sat next to Dan again, and grabbed his hand and just cried. I didn't know it was possible for someone to cry so much. More bloodwork was done; labs came back. There was either no change, or change in a negative direction. Dr P came in again and talked with us, mostly to Mike as he had not been there for our earlier conversation. I listened. I cried more. Mike told the dr to give us a few more hours.
He came back in about 1:30 I think. Suddenly, it was just me and Dr P and Mike in the room. We revisited the same stuff, me sitting next to Dan, the Dr. standing across from me. Mike at the foot of the bed. Dr P again brought up his DNR status. Telling me again he could live indefinitely in the state he was. He told me that he'd seen patients, once life support was removed live for days, and others (who he expected to survive for quite a while), die almost instantly. There was no predicting what might happen. He reminded me that they'd make Dan comfortable, giving him Morphine around the clock, if that was necessary.
In my head, I was almost there. I looked at him and knew that he wouldn't want to be this way. I joked that he was mother fucking me as we sat there, knowing that I'd put him in this situation. I knew it was the right thing to do. I knew I had a family to take care of, and job to not get fired from. I needed to take care of his children. But yet, there was their dad, and I was faced with this god awful decision.
I looked at Dr P and said "I know you've said it before, but please tell me again. There's no way he can get better." He came over and knelt beside me. On his hand, he ticked things off as he mentioned them. His infection. Possible issues with his bowels. He's bleeding somewhere we can't pinpoint. His liver. At this point he mentioned that Dan was not a candidate for a liver transplant. This was not the first discussion about this. Anytime ANYONE made this comment, I quickly followed up with "he wouldn't WANT a new one." This time, Mike chimed in "and let's face it, there are so many others that should be in line before him." I shot him the look of death and just told him to shut up, which he did. Dr P continued. His kidneys. They'd tried what they could. They'd hoped they could pull him through. They couldn't.
I think I just shook my head up and down. I think I might have said "ok." Someone confirmed with me that I was ready. I was. The dr left to set things in motion. Mike left me alone. I felt like I'd been kicked in the gut over and over and over. Finally, every was back in the room. Mike had briefed them. A few minutes later, Dr P and the two nurses came back in. The gave him a shot of morphine right away. This was really the beginning of the end. Dr P told everyone to go to the waiting room. I knew this was expected of me, but I couldn't go. There was no way I was leaving him at that point. Dr P knew there was no arguing with me. He'd already warned me of what might happen after extubation, some coughing, sounds of choking as the tube was being pulled out. I was ok with that. I was just not going to leave him. They did make me move to a chair in the corner of the room.
I remember looking at the clock. He was extubated very close to 2:15. There was no coughing. No choking sounds. It went as well as it could I suppose. I remember looking for non-verbals between Dr P and the nurses, trying to figure out if it was going as planned. His eyes opened, and stayed fixed. Much like you would expect of someone who was already dead. I remember thinking this. I remember thinking that maybe we should shut his eyelids. I also remember thinking that this was the last time I'd be able to see his eyes and it didn't matter to me how he looked. He was making a gurgling sound in his throat. I've read about this since then, commonly known as a "death rattle." I had heard this phrase before, but didn't realize that it meant that death was immiment.
M, C and H came back in. Mike immediately commented on his eyes---they were making him uncomfortable, so the nurse closed them. I remember being pissed about this. The gurgling noise was upsetting C (it DID sound horrible), and the nurse just explained it away as normal in the state he was in.
The nurse turned off the monitor that was tracking his heart, lungs, etc. I asked her to turn them back on. She seemed shocked and told me she could monitor him at the nurses station. Luckily, H chimed in that she'd like to see them too, and so the monitor was turned back on.
I was next to him again, C right behind me with her hands on my shoulders. H was across from me, on Dan's other side. Mike was pacing.
I first noticed his heart rate. Big spikes then flat, big spikes then flat. I kept looking from the monitor to him. Back and forth back and forth. I was holding his hand with both of mine. I kept looking at his chest. He was still breathing. And then I looked at the monitor and his respirations said 0. I remember saying what the hell, he's not breathing. C said "oh I think he is, just not enough to be picked up by the monitor." I didn't believe her. I looked across at H, who although not a dr may as well be. She looked confused. What in the fuck was going on. His respirations were 0. His heart rate was flat. But the other monitor, can't remember what it was, something was still "there." At this point, I didn't realize I had completely latched on to his forearm and I was moving him a bit, which was keeping something "going" on the screen. H told me to let go of him, which I did, and everything went flat. H said "he's gone. I think he's gone." C was in denial. She said no. I said "yes, he's done. That's it. He's done."
It had taken 20 minutes. That was it. He was ready. His body was ready. I found out after the fact, that immediately after extubation, his lungs were already down to 30%. One of the two organs that we didn't think were failing him, clearly did.
The dr came in about 10 minutes later. He checked his heart and his pulse and looked over at me and whispered "He's gone. I'm so sorry." I said "you said it might take 48 hours." In my head, I had planned on that time. I hadn't expected my time with him to be ripped so short. He just apologized and said there was no way to predict, which my head knew, but my heart wasn't happy with.
The chaplain came in and offered a nice prayer. He asked where "the body" needed to be transported to. I let Mike deal with that. Dan was officially "a body" but yet I hadn't stopped holding his hand. We stayed for close to an hour, I think, getting a plan together for the rest of the day. Finally, everyone started packing things up. Putting the kids pictures away. Taking the things that had been surrounding him. The jerseys came down. The shoes he was wearing the day he was admitted came out of the drawer. "Do you want them?" I wasn't sure, but I wasn't ready to leave them. Leaving him was enough. The shoes are still in the trunk of my car.
C and H left with the bags. I walked out so M could have his time with Dan. When he was done, he told me to take as much time as I needed. I stayed for another 10 minutes I guess. I kissed him. I rubbed his head. It was already getting cold. I told him that I loved him. That I'd always loved him, and that I'd love him forever. I told him I would take care of our children. I told him that he should never worry about that. I told him I was so sorry that I had to leave him there. That I was so sorry that I couldn't save him, as I had promised his mom in the letter I wrote to her after she had died.
And then I left him.
We'd all made a plan to meet for a drink, to serve as a "transition" for me between leaving the hospital and picking up my kids. I already had a friend ready to babysit, as I had expected to be spending the night in the hospital, so we all planned to meet at one of his favorite restaurants after I got the kids home.
It was nice. It was as he would have wanted. It was me, C, H and her husband and Mike. Around 8, J sent me a text trying to find out where I was. I told him I was finishing a beer, so he came to meet us. I have never been so happy to see him. I saw him walking through the restaurant trying to find our table. Once M saw him, he popped out of the booth so J could sit down. He just grabbed me and held me and there I was sobbing again. Nothing could take my pain away, but him being there helped to "steady" me. I knew he'd take care of me. And he did. And he once again made a potentially awkward situation normal. There he was, sitting with Dan's brother and cousin (whom he'd never met), and it didn't phase him. Thank God for him, that's all I can say.
I'm exhausted. There's more to say, but need to do it another time.
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