Oh the things that set a person off…
I was reading an e-mail that our supervisor sends out on a daily basis called the “Daily Diagnosis”. It talks about infectious diseases, medications, and different types of research going on. I ran across an article that was talking about how Mamba venom contains a painkiller that works just as well as Morphine but without any of the side effects. It went on to say, and I quote, side effects “...such as depressed respiration and addiction…”
I know that this doesn’t seem like a big deal, it’s just words. It’s just simply talking about a pain medication. But this is a medication that helped my husband ease into the next life and earn his angel wings. It helped his excruciating pain level. It made him more comfortable than he's ever been here on earth. It helped him not panic when we started and continued to withdraw the ventilator. As we upped the Morphine, his breathing became more shallow, or as the article states, he had significantly “depressed respiration”.
Reading those two words hit hard. I don't think it was specifically those words that did it, but just the topic in general. Morphine. A drug that I now really love to hate. The decision to allow the nurse to give him the very first dose of morphine was one of the very hardest decisions within the last week of his life. It meant that I was taking control and giving the medical team more control than they've ever had. By allowing them to give him Morphine, I was taking away my husbands ability to speak. Communicate. Move. Be involved with his medical treatment like he always has been. I was beginning the very hard process of handing him over to God. I was ending our mortal relationship in the physical sense. Everything was again changing and I had to brace myself for what was to come.
Spencer had always been in charge of his health. He may not have made the best decisions sometimes, but it was always his choice. His final call. He made critical decisions about his health long before a young boy ever should have to decide these things. And he made these critical decisions up to the very last week of his life. Choosing to have DNR orders. Planning his own funeral with his wife. Things like this that no one at the age of 23 should ever even have to think about.
But the moment I asked for the Morphine was the moment that I became in control of his fate, so to speak. The moment that I began making every single decision for my husband. It was in my hands. I knew what Spencer wanted. We'd talked about it multiple times. It was always changing and the topic was always being brought up.... but I knew his wishes on how he wanted his life to end. Painless and struggle free. He wanted to be at peace and experience an easy transition.
Even though I knew this is what he wanted, making that decision was so incredibly hard. I remember the nurse coming in the day before he passed away. She noticed that he was moving around a lot and a little bit uncomfortable and asked me if we should give him just a little bit of morphine. At one point she even brought some in the room. But I continued to tell her, "No, not yet." I needed time with him and I knew that if he had any kind of pain meds in his system I would not get the time I wanted and needed. So I continued to decline throughout the day and she finally just told me, "well if you think that he needs it at any point in time, just let me know and we'll get it for him." I finally got some precious time with him the day before he passed away. It was sweet, intimate, and perfect. I didn't really have all that much to say to him at that point except reminding him that I loved him with all my heart and that I would be okay. I asked him several questions and we discussed a few different topics.... and then we just laid beside each other, hands intertwined, never letting go; heads close to each other; kisses on the cheek; smiles being shared when we looked into each others eyes; tears being shed as we knew... just knew; hearts beating together as one as we drifted off to sleep.
That evening as my parents drove in from Kansas to see Spencer and be with me he had his last alert moment, which I'll share at some point, but not now. It was so very special for me and my family. When he said what he needed to say to my parents and they said what they needed to say to him, he drifted off to sleep. As we were sitting in his hospital room, chatting, we noticed him moving around a lot. Getting really uncomfortable. That's when I just knew. He needed something to help him. He was in pain. He couldn't breathe right. He was suffering. Even though it was hard to press the nurse call button, I did it and asked for a low dose of Morphine so that we could both sleep through the night.
That night I slept like a baby. I woke up a couple of times to the alarms from the machines, but I got a very restful sleep. Probably knowing that he was comfortable and I had a VERY long day ahead of me, as I knew the next day, I just knew deep down in my heart, it was going to be his last. That night was going to be my very last night with my husband. It did take quite a long time for me to fall asleep. I couldn't stop looking at him rest. I couldn't help but think of the time we shared together in the last week. The very special moments we had. But I was at peace. For the very, VERY first time throughout that whole ordeal, I was at peace, just like Spencer was. I had accepted, as much as one possibly can, the fate that awaited us the next day.
On December 11th, it was a fairly slow day. I had been in very close contact with the palliative care team and expressed my concerns and both mine and Spencer's wishes. We made the decision to keep a very low dose of morphine in his system to keep him comfortable.
There was a moment that they asked me if I wanted them to give him more Morphine, but he looked really comfortable and so I told them that we should just hold off. I think there was part of me that just wanted one last moment with him. (of course one last moment would have turned into 2, then 3, 4, 5 and so on... you get the idea...) I wanted him to open his eyes and see me. Smile at me. Kiss me back. Hold my hand. But making the decision to not give him another dose of Morphine was not my brightest idea, but how was I to know?
He started coughing and when we suctioned it out of his lungs he started to bleed. A lot. It was terrifying to me. My parents had just went downstairs to grab breakfast and I immediately texted my mom and told her to hurry upstairs, that Spencer wasn't doing well. I honestly thought that was it. He was going to die right them. It was the scariest moment of my life.
I thought I was watching my husband bleed to death right before my very eyes. I was so, SO angry with myself, not only in the moment after it stopped, but for weeks and a few months after as well. I kept telling myself if I had allowed them to give him the Morphine, that never would have happened. He was suffering, in pain, and not comfortable at all. That wasn't what he wanted and I was the one that screwed it up. I really felt like I had let Spencer down by not respecting his wishes. I felt like I was being SOOO selfish trying to keep him alive despite how he felt. I felt horrible. As he was coughing he was 'awake' and just kept looking at me. I don't know if he fully understood what was going on, but I continued to tell him that it was going to be okay, not to panic, and just try to relax. He was struggling for every breath. Struggling more than I had every seen him struggle before. You could see every muscle and bone in his neck with every breath he sucked in. It was terrifying. It put tears in all of our eyes. Even my dad, and he VERY rarely shows emotion. It was awful. Surprisingly I was able to stay composed on the outside, but on the inside, as I've stated, I was beyond the point of freaking out. I was panicking. I was in a fight or flight response internally. I don't know how I kept it together. It was all for him.
But that moment really brought the big picture into place. It really made me realize everything that was going on. I was so angry with myself and so sad and scared and hurt. I decided then that we needed to get him Morphine. Not just a low dose, but a dose high enough to keep him fully comfortable. A continuous drip, whereas before it was just bolus doses. This time, I knew we couldn't stop it. I had to put myself in Spencer's position and realize that he was downright miserable.
They told me that I could take things at my own pace. We didn't have to rush into anything, we should do it when we were ready. When I was ready. To up the Morphine more to make him comfortable. To ween down the ventilator and eventually remove it. To let my husband pass away like his body was so desperately pleading to do.
I remember when the moment came that my parents and I were just watching Spence. Our chatting had basically stopped and we were just waiting. What for? I don't know. We all knew what the next step was. It was that huge elephant in the room we were all ignoring and talking around. My parents were waiting on me. I was just waiting on when it felt right. when I felt ready. But honestly. When do you feel ready for something like that? You don't. You just don't. Ever. After talking about it a little bit with my parents, I made the decision to page the nurse to get the palliative care doctor in his room to start the process. Pressing that button was so surreal to me. I was just going through the motions at that point. I have no memory of what made me finally make the decision to go on with the process. I don't know what on earth (or beyond) gave me the power, strength, and courage to press that button.... but all of a sudden my arm was reaching for it and it had been pressed.
After speaking with the doctor and getting everything ready we started the process. I think I'll stop there as I can't quite find the words to share the rest of it.... I just don't think I'm quite ready.
But my point of this whole post is that just reading those two words, "depressed respirations" and reading about Morphine brought me back. Back to my husbands final two days on Earth. I got many flash backs and just kept staring at those words, unable to look away. Unable to think about anything else. I saw his face nearly perfectly in my mind. And it was a face that I didn't want to see. It was an image when he was struggling so much... when he just could NOT breathe. It was the image of him as we were upping the morphine and weening down the ventilator. The feelings that I had came rushing back at full force. All at once. How I wanted to scream out so many times during the process, "STOP IT!! We're going too fast! This is the wrong decision!!!" The feelings I had when we had finally disconnected the ventilator and he had passed away. The words ringing in my ears when the doctor said, "we do think that Spencer has passed away now". When the second doctor came to confirm the time of death. How I so desperately wanted to yell at them to bring him back. To just do SOMETHING because there was NO way that my husband could be dead. There is no way that I just watched him die. The picture came to my mind of his lips as they started to slowly turn blue throughout the process. His face as it came a pasty white and drained of all color. How lifeless his body was. I was able to feel, again, his hands as they started to chill, reminding me that his body was not alive anymore circulating his blood and keeping it warm. Being amazed at how quickly it all happened. How fast things change. I remember knowing when it was time to leave. I told myself before hand that when he started to get cold... it was time to go, because that was NOT the Spencer I wanted to remember.
You know, I hate how I can recall memories like this so well.... relive them as if they were yesterday. Remember every detail of his face and even be able to feel my emotions and feel his skin as if it was just yesterday. Yet I cannot do that with happy memories. Fun memories. The "feel-good" memories. It drives me nuts. I just hope some day I'm able to recall those just as well, if not better, than I can recall these memories that resurface so quickly. So suddenly. And so perfectly.