This was truly a day of the beauty and love that one can give to another human being in a time of dying, to give to Derek dignity in the final days of his life, to ease his suffering.
I had realized the day before that Derek’s needs were too great to be able to take him home. He was on oxygen, taking many different medications. He still had his central line in to push the IV meds and a catheter. They were no longer giving him Lovenox or Lasix so his swelling was increasing. He was also still very strong and in some of his times of agitation he wanted to get up. So I asked if he could just remain at UMC. The University of Arizona is where he had attended both nursing and medical school. It was also where he worked for six years, in the pediatric ICU. He was comfortable here and he knew so many people here. When I asked if he could stay both Emily, from his palliative care team, and Dr. Waldrum, his attending physician, said absolutely. I felt relief that he could remain in his familiar surroundings with so many people who loved him.
I was in awe of the amount of love surrounding Derek and how everyone was showing him. The staff in the ICU were amazing, providing him with the best of care. I couldn’t even begin to express my gratitude for their care of my beautiful husband. It provided me with comfort to know that they were giving him what he needed to get through this time. And all of our friends were showing him their love trying to ease his pain and suffering: rubbing his back, helping him stand, touching him, praying for him, talking to him and just loving him. It was beautiful to see.
Even though I told Derek to do what he needed to do, that we would be ok, that so many people were going to be there for us, to care for us, I should have known that he wasn’t done yet. There were some additional things on his list that he wanted to do. I wasn’t really sure what some of those things were, but he showed us throughout the day.
He needed to tell me that he wasn’t ready to leave me yet. It was very taxing to tell me this because he was having such difficulty breathing and because he was in so much emotional pain. He just cried and cried telling me. He needed to hold his son. Derek had always been very hands on with Gabe. I had always admired how much physical love he showed Gabe. But over the last few months there had been very minimal contact between them because Derek had been in so much pain. But Derek didn’t care now. He needed to tell everyone how much he loved them. He needed to ask my father if he could call him dad. My dad was honored and told him he is his son. He wanted to sit and stand on his own. In just a week’s time he had lost a lot of strength but he was determined that he would do it. He reminded me numerous times throughout the day of someone in rehabilitation who is told that will not be able to walk and who overcomes this and walks. He was very determined and insistent that he wanted these things. He needed to go outside. It had been a week since his admission and he had not been outside. He wanted to see the sunset. The staff proposed that we take him to the helicopter pad on the top of the Diamond’s Children Center, but unfortunately security wouldn’t allow it but they did allow for Derek to be taken outside. What a site to see and what a gift of the staff to give this to Derek.
With all of this activity and Derek’s inability to catch his breath, he was becoming very agitated. The staff was trying to balance his need for self determination and autonomy with his comfort. It was time that they would need to step in and decrease his suffering. In order to do this they would have to have him more sedated, which meant he might not interact with us anymore but we needed to ease his suffering.
I had to go home to get the children to bed. They were struggling. Isaac drove me and the kids home. I talked to them on the way home about Derek dying. We also talked about their resources during this very difficult time. Both of them needed me to lie down with them, to help them to sleep. Emma wanted to sleep with me but I had to go back to the hospital. I made a promise to her that as soon as all this was over they could both sleep with me for as long as they wanted. In her Emma way, she asked me “forever?” ”Yes, I told her, for as long as you need.” Gabe hadn’t said much to me throughout the day but I knew he was struggling. He finally let some of it out when we were alone. I just let him cry. He was asking me all the right questions and I helped to validate his feelings. I wrote the Serenity Prayer on his dry erase board and shared with him how much comfort it had given me over these last 11 months. I couldn’t stop their suffering or Derek’s suffering. I couldn’t stop this from happening, but I could be there for them and I wasn’t going anywhere. I held him and let him cry. Then I told him he still needed to take it one step at a time. It was too overwhelming to look at it all right now. Just focus on right now. Right now he needed his rest. It was going to be another tough day tomorrow. Just rest. Just rest.
Isaac and I returned to the hospital. George, Derek’s best childhood friend and his best man in our wedding, was at the hospital, joining Susan, Dad, & Stacie as well as Daniella, Mark and Jamie. Derek was sedated and comfortable. I was relieved to see him without suffering. We all prepared for the night. Stacie, Isaac and I stayed with Derek. I crawled in bed with Derek and snuggled up to him, hoping it would provide both of us with comfort. I sang him our song, Dave Matthew’s Band, Lover Lay Down. I held his hand and cried. It was so painful to think I would never again have his hands on me. I played a message on my voice mail that he sent me back in September after he had been diagnosed. I loved hearing his voice. I tried to think about all the memories we had shared.