Randy died peacefully at home in the early hours of October 21, 2022, and was laid to rest with a wonderful Celebration of Life one year ago today, November 19, 2022.
So, what happened?
Saturday, October 15th – I went into Randy’s room to wake him and get him ready for the day. Our wonderful caregiver Heather arrived shortly after. It seemed like Randy would sort of wake up, and then nod off again. I felt I couldn’t rouse him to full wakefulness. After checking his vitals, I called the advice nurse to get their opinion. She said we should call 911 and head for emergency. My first thought was, “Is it really that serious?” I’ve never had to call 911 before, so I was scared. My mom, who lives with us, and Heather both agreed – we should call 911. So, while I called, Heather and Mom started organizing and gathering everything we might need for the paramedics. Medication lists, the vitals tracking chart, Randy’s DNR, etc. Weirdly, when the paramedics arrived, they asked if we were an adult facility! We were so prepared we looked professional or something. “No,” I told them, “This is our home.”
Once at the emergency room, they ran a bunch of tests. They knew he had a gastrointestinal bleed, and he was anemic, but couldn’t find anything else wrong. They recommended that he stay overnight for observation. Within a few hours, we were transferred out of emergency and to a room on the floor. I could tell there was still something wrong with Randy and thought maybe it was because he hadn’t eaten or taken his medication for that day. After speaking with the nurse, she put in an order for some food and for his medications. I’m trying to help Randy eat a few bits and take a pill, when his heart rate suddenly starts to increase, and he becomes very agitated. He looked at me very intensely and grabbed my hand, saying, “Hurry! Hurry!” His nurse put out the call and within very short order his room was swarmed by an emergency response team made up of the lead doctors of all the departments…general hospital, emergency, ICU, etc. Randy’s heart was in atrial fibrillation – an irregular, very rapid heart rhythm. They quickly administered medication which then made his heart rate drop dangerously low. So, they tilted his hospital bed to be head down and gave him medication to try to stabilize him.
The attending doctor told me that Randy was in septic shock and not responding to the medications they could administer outside of ICU. To continue treatment, they would have to move him to ICU, bring his heart out of a-fib with defibrillation (meaning to shock his heart back into rhythm), and that they’d have to introduce a PICC line (which stands for Peripherally Inserted Central Catheter) into his neck in order to administer a stronger medication into his system to try to fight the infection. They said both procedures were incredibly invasive and painful and that there was no guarantee that they would work. Considering that Randy had a DNR, they asked what I wanted to do next.
This was the moment. I wasn’t ready. It was very surreal, and I just stared at the ICU doctor helplessly. He was so kind – he said, “I cannot tell you what to do. I can tell you that in these cases when making your decision, try and keep the big picture in mind.” So, I replied, “The big picture is that Randy has an intestinal bleed that cannot be fixed, as he is too fragile for surgery. Even if you were able to re-regulate his heart and heal the terrible infection that caused the sepsis there is no cure for the GI bleed that is draining his life away.” The ICU doctor nodded his head in agreement. It was so hard for me to say, but I took a breath and almost as if in a dream said, “I think we should move to comfort care.” The doctor nodded solemnly, “Now that you’ve said it out loud, I can tell you that I think you are making the right decision.”
I’d like to say it was like a switch flipped in my brain at that moment. Literally from one breath to the next, my mindset went from treatment, recovery, and rehabilitation – to a total focus on helping Randy have as peaceful a transition as possible. But truthfully, in my mind, I was still thinking, but he could recover, right? His body can fight this infection off, and his heart can reset itself. We’ll just see what his body can do. After this moment my memories of the next few days are blurrier.
On Tuesday, October 16-17th
The nurses unhooked Randy from all the monitors and removed his IVs. Randy was moved to a smaller room.
My friend Catie came. She brought me food and stayed the first night with me there in Randy’s hospital room. I sat in the chair next to Randy’s bed that night and listened to him struggling to breathe. His breath rattled.
I told the doctor I wanted to take Randy home, so they started the process for hospice and transportation home for him. The hospital chaplain visited with me and then prayed over me and Randy and gifted him with a lovely hand-made quilt. Randy’s brothers Kevin and Bob and their wives Jane and Carol came to the hospital and helped me watch over him until arrangements were finalized.
I didn’t tell Randy explicitly he was dying. I just told him that he had a very bad infection and that the doctors had given him all the medicine they could. That it was up to his body now and that we would be going home where he could be comfortable and rest easier. Anytime he’d overhear doctors or others talking if I saw him getting upset, I’d remind him again, “You have a very bad infection and there’s nothing more the doctors can do for you here at the hospital. It’s up to your body now to heal, so we are going to go home so you can rest in your own bed. And watch TV.” He would let out a big sigh of relief and close his eyes and say, “Yes.”
On Tuesday, October 18th Randy was transported home. Randy’s brothers Bob and Kevin helped rearrange the living room furniture and then moved his bed into the living room. The hospice nurses came over to the house to complete intake, meet us, and tell us what to expect. They asked me what I would like out of the experience. I told them that I wanted to be sure that Randy didn’t feel any pain or have any anxiety about what was happening. If that meant keeping him sedated, I would be fine with that…his physical and mental comfort were my only priority. With that information, they gave me instructions on which hospice medications to administer, how much and how frequently.
On Wednesday, October 19th the hospice nurse came over to check on Randy and a bath aid came out to give him a bath. The hospice nurse said Randy was holding on longer than she’d thought he would that he seemed to have caught a bit of a second wind coming home, and that it wasn’t uncommon for it to happen that way. She said he was uncomfortable, so made an adjustment to his medications. After his bath, he seemed so peaceful and comfortable. I know he was so happy to be home. When he was conscious, I would tell him how very much I loved him…and he gave me love back ten-fold with his eyes. I’d ask if he was tired, and he’d sigh, “Yes,” and his eyes would flutter closed. “Rest,” I’d say and kiss his forehead.
On Thursday, October 20th, The hospice nurse came by and after studying Randy closely said she thought tonight would be the night. That evening my friend Catie had a prompting she should come over, so showed up and hung out with us and watched movies for a while. We watched The Thin Man and reminisced about Randy. It was a lovely evening, laughing and talking. Randy was unconscious, but he felt part of the conversation.
Bob had offered to sleep on the couch next to Randy that night, so I went to Randy to give him a good night kiss. As I stood there with my hand on his heart, I could feel his heartbeat slowing, so I started counting the seconds between beats. I told Bob and Carol; “I think it’s starting.” We gathered around Randy’s bed, our hands on him. We spoke words of love, reassurance, and release to him. When I touched and spoke to Randy, I could feel him trying to rouse, which I didn’t want. I wanted him to pass peacefully. I had also heard that some won’t pass when their loved one is in the room, so I wanted to give Randy some space if that happened to be the case for him. So told Bob this and asked if he’d mind if I laid down for a bit. He agreed and said he’d come get me if/when anything happened. I think it was around midnight.
On Friday, October 21st, at 225am Carol woke me and said Randy had stopped breathing. I had never seen a dead body up close before and I wasn’t sure if I would be scared when I saw Randy. But I walked into the living room crying and when I saw him…it was just Randy. It wasn’t scary. I scooped him up in my arms as best I could and squeezed him hard, peppering his face with kisses. My poor, poor love. I said my last goodbyes.
I went and woke my mother to tell her Randy had passed. She came into the living room and holding my hand, she put her hand on Randy and prayed over him. My mother has a strong spiritual gift, and her prayer was so powerful.
We called the hospice nurse to advise her of Randy’s death. She came and verified his death and called for a bath aid and the funeral home for us. The bath aide came out and prepared Randy for the funeral home by cleaning his body and removing his catheter. After she left, we waited with Randy for the funeral home transport. I’d periodically touch his chest, which was still warm. I guess there are gasses that still leave the body after death, so there is a constant very, very soft exhale. The body is such a miraculous engine.
When the funeral transport attendants arrived, they moved Randy’s body into a beautiful burgundy fabric body bag and moved him onto a gurney. At my request, then left his face exposed so we could all say our very last goodbyes. After they put his body into their vehicle, they stood in attendance at the back of the car until the hatch had finally closed. The attendants were so respectful and treated the whole process with so much dignity that I cried. (I still cry whenever I think of it.)
My knees were killing me and I was exhausted – as we all were. Everyone went back to bed to try and rest.
Later that afternoon I met with the funeral home to fill out Randy’s death certificate and finalize cremation arrangements.
The End of My Spousal Caregiving Journey
After consulting with family and close friends, we settled on November 19, 2022 as the date for Randy’s Celebration of Life and the disposition of his ashes.
I spent the next few weeks preparing all the arrangements, ordering flowers, etc. for the service. Preparing for and hosting the disposition and Celebration of Life, I consider that to have been my last act of service for Randy and my final day as his caregiver.