Tuesday, April 28, 2015

April15

This was the day that started the end of everything.

I got to the hospital about 9, to sit with him for a while before M got there. It was actually soothing for me to be there by myself, with him. I talked to him, I kissed his forehead, rubbed his arm. I pulled up a chair next to the bed, and grabbed his hand. I noticed that he didn't respond in anyway, not his head moving a bit, not his hand. I squeezed it several times but got nothing in return. I noticed his hands were extremely bloated. They'd been swollen before, but that morning they were clearly changed, his feet too. It was indicative of his kidneys slowly starting their shut down.

I was with him for an hour or so before Mike showed up, and then one of my bffs C showed up as well, completely unannounced, but thank GOD for her. She was my rock for the rest of my journey through this hell.

Dr P came in not long after that. I think I mentioned before, but we had really bonded, starting with our first meeting on Saturday. He was young, maybe early 30's, and he cared. It was obvious. When he came in our room, I truly felt like Dan was his only patient. This morning, I sensed something was different the second he walked in. He was always soft and calming with his words, but on this day nothing could calm me. He talked about Dan's progress through the night, same as every other morning he came to check in. Then, he looked at me, actually he rarely took his eyes off mine as he was speaking. I remember just being drawn to him, knowing he had full power to save Dan, and that his words, whatever he spoke were the truth. This will sound odd, really odd, but now that I think about it, he was really my God for those few days. I have to imagine what I felt for him, the trust I put in him, was how people who are religious feel about God.

He looked at me, after that first discussion of how the night had gone, and gently, slowly and quietly told me there was nothing left for them to try. That although they had thought they could see him through this, his body was not responding to the medicines. They'd officially tried everything and there was no hope. And I thought I was going to die myself. His words knocked the air out of me. And I cried and cried and cried. And thank God C was there with me.

He told me that it was time to think about making him comfortable, that we needed to move from treating him to making him comfortable. He gently told me that Dan could live for months the way he was then (on the vent), but reminded me that it's not what he wanted.  And then he came over to me and hugged me. And I sobbed.

Dr P also mentioned that they had sedated him the night before, which is why he didn't respond to me. M asked, after the discussion of turning off life support, could we lower his sedation meds so that he might be responsive. The dr basically said no and that our job was to make him comfortable and it would serve no useful purpose.

After that, in the next few hours we talked about what would happen and when. I was beyond exhausted. Once hearing those words from the dr, I made up my mind that I was going to spend the night. I made some calls, got my kids taken care of, and was in it for the long haul. In the end, as the day wore on and I could barely focus, I asked to talk to Dr P again. I asked if he had any reason to think that Dan wouldn't make it through the night. Not guarenteeing anything, he said that as long as they maintained what they were doing, there was no reason to think he wouldn't survive the night.

His cousin and her husband from New York came in late that morning. I'm so glad she was there. Dan always thought of her more as a sister than a cousin and they connected much better than he and his brother ever had.

All along, even though he was next of kin, M really let me take the lead in making decisions. I knew in my head, as I left him that night, that we would take him off life support the next day. It made sense. It's what he would have wanted. C had mentioned to me that this was just one of my responsibilites...that I was also a mother and I had a job and this could not go on forever. I also heard Dr P's voice telling me once that happened, we might expect him to survive a few days.  So I went home to rest up and get some good sleep, in preparation for the next few days with him, never intending to leave. I had been told on a previous night that I couldn't spend the night in his room. That I could sleep in the waiting room and pop in and out of ICU, but that I couldn't set up camp in his room. Once Dr P delivered the news, I just simply said "once it gets to that point (meaning vent turned off), I don't plan to leave him. Is that ok?" And he gave his permission for me to stay. So that's what I was going to do.

Monday, April 27, 2015

Completely drained

What a fucking day.
It started well. I got kids to school on time and made it in time for a 9 am meeting. I felt very motivated and "on." After meeting, I had to call the crematory place. When I was there yesterday, I learned that 1) the dr hadn't signed the death cert, despite the fact that legally they need to do so in 72 hours. 2) Dan's brother hadn't signed the authorization to cremate form. I called to check on status of both, and learned they were still trying to get in touch with both Dr and M.

I got a call about 2 pm saying that the dr had signed, and had sent on to vital records, but that they'd left 3 message for M and he hadn't responded. I was livid. I mean, WHY? What's so hard? So I called him a left a message. It's almost impossible for me to say "cremate" out loud, in regards to Dan. I just can't do it. And I was trying not to be a bitch on the phone, but I just about lost it and got really emotional. The message told him that the dr had signed, and now it was up to him, and that they couldn't do what they needed to do until they heard from him.

And what it felt like I was saying is "I'm begging you to destroy the body of my children's father. Please, let's burn him until there is no more." And again, I was sobbing.

It just hurt so badly to think of them doing that to him. And, what doesn't make ANYTHING better is that when his mom died, M and I went to see her there, before her cremation. We didn't pay for the 1 hour family friendly viewing. We saw her, no lie, as M said "feet first, getting ready to be rolled in." There are 3 cremation stations in one large room, so they can actually cremate 3 people at one time, in individual machines. So, I can picture this now. I can picture his face as I last saw him, and I can picture him being rolled in, and the door closing and I cannot fucking DEAL with it. I just can't.

So, I came home and crawled in bed, and obsessed about it.

And a friend is making a slide show for his memorial. She emailed today asking for several of his favorite songs to add to the DVD. So I took a trip down THAT memory lane. Listening to our favorite music, reliving places and times when it had been so important to us.

Then, after I got kids home from school and was dealing with dinner his old bff S called. He called to tell me I'd done a good job with the obituary and had said some nice things. Um, no. Obituaries are not nice. They are tradition, for a crappy situation. You can't make an obit nice. You just can't. And he later when on to clarify that he was referring to the mention of his military history. Well, he served you idiot. Why would I NOT mention in. He kept going, and was really irritating me (and mind you, I like S alot--always have). Dan didn't deserve you. You were too good for him. You've been amazing through all this. No one else would have done what you did. And I was floored. It felt like he was spitting on his grave. It was wrong on so many levels. He said that he'd get a good showing at the memorial by his old friends, but it felt like he was saying that Dan didn't deserve it. He told me that he and his wife (a friend also) would be there on Thursday, but it was to support me, not Dan. I was stunned and speechless, honestly. It wasn't registering how someone could be saying these things to me, about him. My only real rebuttal was that I will defend to the day I die, that he never did anything with mean intention or maliciousness. He was at the mercy of a mental illness that he could not control.

And finally, the icing on the fucking cake...S asked me if daddy was going to be at the memorial on Thursday. She didn't mean a living daddy, she meant his body. I told her no and she asked why. And so began the conversation about cremation. I knew it was going to happen, so I was a bit prepared, but I don't think you can ever be fully prepared to discuss this with a 5 year old. i told her that some people want to be buried in the ground after they die, and some people want their bodies to be turned into ashes, and that was what daddy wanted. She asked what ashes were. I told her they were sort of like sand, or flour. I told her that they would put daddy's body in a special machine that gets very warm and after an hour or so, sort of like magic, his body would be transformed into ashes. No use of the words heat or burning, but it is REALLY hard to explain it without those words, especially after my mental state today! And then, I told her once that had happened, the people that worked at the funeral home would put the ashes that had been daddy into a box for us to bring home. She did NOT grasp this. I told her some people liked to keep the box forever and ever and other people actually wanted there ashes to be placed in places that were special to them. She said she didnt have any questions, so I assume that was good enough for a first pass.


We went to see him

These posts are going to be all out of order, but it makes sense in my head to get it out when I need.

Yesterday, Sunday, the I took the kids to see Dan for the last time. We overslept, well not really, but I had wanted to get up earlier than I did. We were rushing around with breakfast, getting dressed. I was about to lose it. Justin was there, and went with us. God love him, he seems perfect, except that he is often late. I am the person that has to be early.  And, we only had an hour to spend with Dan. I didn't want that cut short because we were late. I'd given the kids warning...we're leaving in 45 minutes, 30 minutes...these warnings had been for him too. He freaking got in the shower at the time I had wanted to leave. I was a wreck and seriously wanted to tear into him, but that wouldn't have been helpful, so instead I cried. I cried all the way there. We were only 5 minutes late, and once we arrived I realized there was clearly no rush, and they let us stay as long as we wanted, which, with 3 young kids, was about 1.5 hours.

I thought long and hard about letting them see him. When I was little, I dealt with alot of death, alot of mourning, and it scared the shit out of me for the longest time. I didn't want to traumatize my kids in ANY way, but they are three very distinct people and are dealing with this in very different ways.

Side note: He will be cremated, so was not embalmed.

They wheeled his body (trying to use "body" and not his name or daddy to help us all detach, but it's hard) into a small visiting room. They had put a nice blanket over his body so that all we could see was his face. As I got closer to the room, kids and Justin behind me, I could see in, and saw the blanket first and then his face and I lost it. The person that worked there asked me if I wanted him to stay in the room with me and I told him no, but that I needed time by myself before my kids came in. So he left, shut the door, and I just nearly lost my mind. Of course, I had been with him when he died, and saw his body then, but there is NOTHING like the finality of death as seeing the persons body, with no evidence of life left. And this was my once best friend, the father of my kids, who I had sacrificed myself for, dead, in front of me, and all I could think of was how much I fucking missed him. God, that feeling was just horrible. Actually, there were no words for what I felt at that point.

Once I gathered myself, I looked more closely at him. They'd put some make up on him, which was fine with me. I actually was pleased with his appearance, especially for my kids sake. To me, there was no real evidence of the jaundice. He did truly look like he was sleeping. Curious as I am, I peeked under the blanket. He still had the hospital gown on. They had his arms crossed over his chest, the IV was still in his arm.

I rubbed his head, I kissed his forehead. He was so cold. It was the first dead body I'd ever touched.

I opened the door to give the kids the opportunity to come in. S came in first, and I picked her up so she could see him. She's experienced a death before, and really understands the concept in general, so honestly this was more for her than the twins. I'd told her previously that we could see daddy again, and three separate times she said she wanted to. She didn't cry...I didn't expect her to, she just looked and cuddled up with me.

C came in, relatively unphased, as I expected. This was actually really good for him I think. Before seeing Dan, he really had no idea what was going on. He certainly doesn't get death. I picked him up and walked up close and he was totally ok. We talked about the fact that even though daddy looks like he's sleeping, he'll never open his eyes again, and that he can't talk to us. Throughout the time there, he was really in and out of the room, with no obvious trauma of seeing his dad in that way. He did, and even though it's gut wrenching for me I know it's good for him, start saying "daddy will never, ever open his eyes, NEVER again." 

A had the most issues, and is having the most issues in general. She had woken up angry that morning, which is completely out of character for her. You can count on her to always have a smile on her face. She also requires alot of "transition" time, when faced with a new experience. She and Justin are buds, so he sat down in the floor, right outside the room with Dan, with the door open. She'd walk up to the door, peek in, and then walk away. Gradually, she got to the point where she was sitting in his lap and had the ability to see Dan. Finally, she walked in the room with me. She never let me pick her up in there. She always stayed back, but that was ok. That's what she needed, and what her little brain would allow her to do.

Before we left home, I picked three flowers for them to give Dan. A also picked a dandelion for him:) They had all colored a picture as well. I held Connor while he told me where to place his flower, on Dan's chest. This was also where Sophie and Avery wanted their pictures. Connor's picture went next to his head, along with the dandelion, and on the other side were Avery and Sophie's flowers. I also had written him a short letter that morning and put it in envelope that I put on his chest as well. Below is Sophie's picture. I just love it, and it breaks my heart all at the same time.


We talked with the kids alot about the fact that he can't see us or talk to us, but that he can hear us. And that the funeral home was not the only place we can talk to him. If we're at home, and scared and want to talk to him, we can. If something fun happens and we want to tell daddy, we can! And although he can hear us, he just can't respond. We also talked about the fact that "he will ALWAYS be your daddy. NOTHING can change that." Before we left, both of the twins said "bye daddy. I love you."

We're not religious people. I'm not opposed to the concept of heaven, but when I've never talked to my kids about it before, their dads death did not seem like the best time to introduce. I'm very practical, and want to stick with things that they can grasp and that seem real to them. Can he hear us? I don't know. I'd like to think he can. And, I don't think there's any harm in letting them think that...after all...it might be true.  And, when I think about others who I've been close to that have died, like my grandmothers, I'd like to think that they are watching over me, seeing who I am, what type of person I've become. I want my kids to think that way about their daddy.  

At one point, I was sitting on the couch in the room with Dan.  He was to my left, and Justin was sitting right outside the door on the floor, facing us, so he was to my right. How is this my life? Deceased ex-husband on one side and amazing boyfriend on the other.

It got to the point when the kids were getting antsy. Justin told me he'd take them to the car for me, so I could spend a few more minutes alone with Dan. S ended up staying with me, and he took the twins.

I just didn't want to leave him. I knew I had to. I KNEW it. I willed him to wake up. I can't stand the idea of what they are going to do to his body. But I know it's not different then burying someone. And I understand cremation, I get it, and am "for" it, but just not with him. I want to keep him forever. Not his body lol...I just want him to WAKE UP. FUCK this is so hard. 

And then I wonder, if given the chance, if he could really be given a second chance, would he do anything differently? Would he turn his life around? That conversation happened several times in the hospital "if he gets out of this, if we can get him healthy again, will he turn his life around, or will he go back to the old routine?" We'll never know of course, but even though I knew him on so many levels, I didn't think he had the strength to even want to get better. I think it was always a battle that he was going to lose.

Friday, April 24, 2015

April 11

I received a call from a dr on Saturday morning, about 10:30, stating that she was calling in regards to Dan, that he'd been in the hospital and at this point needed to be moved to the ICU. He had been diagnosed with liver failure and had spiked a fever that they couldn't get down.

He was at one of our local hospitals that he would NEVER have gone to on his own...which is why it hadn't occurred to me to call this particular one when I called the others. The dr told me the following story, the beginning having been told by Dan. Other parts the dr added; some parts I filled in missing pieces. At some points, the info is still missing. Now, it just doesn't matter.

He went down to his car on April 1 to check out his car battery (this is odd). He fell in the parking lot, and lay there for a few hours. He could not physically make it back into his building, so somehow managed to crawl in his car, where he spent the night. Passed out or sleeping, I'll never know. The next day, his neighbor found him and called 911, who took him to one hospital. I'm not certain he ever made it out of the ER there, and was instead transferred to the other hospital, that could provide a higher level of care. He was admitted on April 2, and NO ONE FREAKING CALLED ME UNTIL APRIL 11.  But then, why would they. I assume he told them he didn't want anyone to know. It wasn't until he needed to be moved to the ICU (for the fever), that they started looking for someone, to validate what he initially told them his wishes were.

Upon admission, he had told them his story, and declared himself DNR, but the encephalopathy caused by the liver failure left him VERY confused and they didn't feel confident that he knew what he was saying/agreeing to.

So, after the dr told me where he was, why he was there, she asked me if I knew his wishes. I swear to you, I SWEAR, I wanted to lie. I wanted to lie so badly. I knew what he wanted...although over the next several days I realized how LITTLE I knew about what he wanted. I wanted to tell her I didn't know. I wanted to buy some time so I could decide if I should lie. But, I didn't. Through my sobbing, I told her that he was DNR, "but that he has three kids." And then I completely broke down, alone in my bedroom, dr still on the phone, while our kids were playing in the backyard, completely oblivious to what was going on. I could hear their sweet voices through the open window. Thank god for a fenced in yard, because for many minutes, I know I would not have been capable of helping them.

I have felt like I signed his death sentence many times before. But this time, this time I had told someone who would hold me to it, should it come to that. It was beyond unbelievable to me that I was in this situation. 

The dr kept mentioning that she knew I was shocked. In truth, as I told her, the shocking part wasn't this situation, but that I had been so certain he'd left town. I'd expected a call from a jail in Florida, not from a dr 10 miles away. In my head, I'd been preparing myself for this call for years. Ironically enough, I'd recently told a few friends that he seemed to be in a good place. He came to visit twice after Christmas, and there was evidence of future planning in his head. He had talked about being worried about his money running out, and then he needed to get a job. I told my friends I'd spent the year prior worrying about his safety, and it was now, at a time like this, when he seemed to be ok, that he was going to surprise me with something bad. And he did.

The next few hours were a blur. I called Justin. I called a friend who was able to come babysit so I could get to the hospital. There was never a thought in my mind that I wouldn't go. Of course I would go. I told A and S that daddy was really really sick and I needed to go see him. I saw something in S's face, that told me that she knew this was serious. Such an insightful little girl.

He was yellow. So yellow. My first thought when I saw him was "he's so yellow he's almost orange" which at the time didn't make any sense to me. But that's how he looked.  His temp was about 102.5. He had some IVs in. Clearly hot and clammy. Otherwise, he mostly looked like he was sleeping. He was conscious, but not alert. I grabbed his hand, told him I loved him and that I was there, but there was no response.

It was an awkward situation for me, as the ex-wife, to be there. At the time, I wasn't sure if I was his power of attorney. I had been at some point, but had assumed that dissolved with divorce. I learned later that it hadn't.

Later that afternoon his dr., who I grew to love over the next few days, came to tell me he was at risk for aspirating. For that reason alone, and NOT because his lungs were failing, he suggested intubation. At the time, I didn't realize what that was.  I knew it was a tube, but I didn't realize it meant a "vent" would be used. To me, I simply didn't want him to choke to death and so gave my ok...which started the gray area over his DNR wishes.

His brother came in later that day as well. During his entire ICU stay the "focus" kept changing. The immediate concern had obviously been his liver failure, but most acutely worrisome was the fever they couldn't keep down. At some point, bowel perforation was a concern, and ultimately kidney failure. But on that day, it was the fever.

Dr P told me that he thought he could pull through. He saw no reason why they couldn't get him out of this. Instead of "liver failure" which of course it was, Dr P put a new name to it...acute alcoholic hepatitis.




Thursday, April 23, 2015

He's dead

There's no way to sugarcoat the last 10 days. It's simply not possible. I'm hoping to get it all down here, over the next few days. For memories sake, to just get it out. I don't know.

He hadn't been to my house since Feb 21. On March 24, in response to persistent texting on my part, just checking on him, he responded with the text "The condo is fine. The bills are paid. I'm bed-ridden." What the what? Then started several days of constant texting/calling from me, checking on him, making sure he was ok. No response. It was Dan. It wasn't shocking to get no response, and I eventually got pissed off, chalking it up to his passive-aggressiveness. Creating drama, and letting others deal with the consequences. So I toned down the texting, but was obviously still concerned or I would have stopped altogether.

On April 6, I sent him a text and noticed that it didn't get delivered to his phone, so I called him. His phone was off/dead. This was NOT the norm for him. He may not respond, he may not call back...but he always kept his phone charged. I drove by his condo on April 7, in the morning. I noticed that his bedroom light was on, which was also odd for him to have a light on during the day. I drove back by after work, and the same light was still on. I called his friend who's a cop and asked if we could do a wellness check on him. We'd planned it for the next afternoon. I drove by again that next morning and saw the same light STILL on, and just got a really bad feeling. Cop friend and I texted and he was able to meet me there about 45 minutes later.

When we got to his door we knocked, and no answer. We opened the door and David yelled his name several times, no response. Each time he yelled his name, and each time he didn't respond, my stomach dropped deeper and deeper. He was finally dead. Gross I know, but at the same time as this thought, I kept thinking, it would have been a while. If he was dead, we'd smell something. We finally walked in, and discovered he was not there. His car was there, but his keys, phone, wallet were missing. I was floored and stunned, but also had expected there might come a time when he left town, so it wasn't a huge shock. I went back over on Thurs and Fri after work, searching for something that might tell me where he was. There were no e-mail confirmations of hotel/flights. I found his charger. I found two medicine bottles, one was his depression meds. By the count, I assumed he'd stopped taking them about 6 weeks prior. There were no meds for his mania. For this reason I alone, it made the most sense to me that he'd left town.

David checked the jails in the city and surrounding areas. He called the city morgue. I called the two hospitals that he'd most likely go to, if he'd gotten sick or someone found him and called 911. He was no where. At the suggestion of a few friends, I had decided on that Monday afternoon that I would file a missing persons report. I felt strongly that he was at risk of hurting himself (and possibly others--unintentionally), and wanted him back home and stabilized on meds.