To pick up where I left off, Friday 2/13 the hospitalist finally called Mom, after Mom called administration and made a stink. Apparently, the information that the nurse couldn't give us was that Dad had Stage 4 Melanoma. We already knew that. And not only did we know that, Mom and I had both told multiple nurses that during update calls. I told the ER doctor when he called the first day dad was admitted to the hospital. It was a complete lack of communication. The hospitalist called Mom, and I came home while she and Kate were on the phone with him. They were treating Dad for pneumonia and sepsis. Why it took them 4 days to tell us that Dad was septic is beyond me. That's a pretty basic, but pertinent piece of information. He kept saying that the blood work was showing improvement. But they had up'd Dad's oxygen up to 15L at this point. So I asked if there was improvement, why they were upping his oxygen. "Just to keep him comfortable." He said that the overall prognosis for Dad was poor. He had a blood clot in his left leg, but the treatment for that is blood thinners, and because of Dad's cancer, the risk for a brain bleed outweighed the benefit. He recommended putting all of Dad's cancer treatments on hold, saying that it would most likely cause more damage than help. At the end of the conversation, we decided it was best to bring Dad home on palliative care, and the doctor said he'd get in touch with the palliative care doctor. The palliative care doctor called Mom shortly after and after their conversation, it was decided that home hospice was more appropriate for Dad.
I left my parents that day feeling so relieved. But as the day went on, I started feeling that dread of losing my Dad. We were bringing him home on hospice. That meant that we were not expecting him to live much longer. Granted, someone could be on hospice for days, weeks, months. But when someone enters hospice care, the expectation is that they will be passing soon. Of course we knew this from the time Dad got his diagnosis. But this was obviously heavier.
On Saturday, my mom reached out to her neighbor, Jerry Owensby. Jerry is a physician, and she owns a home hospice facility. She called the hospital and got the ball rolling. Mat and Randy came over to mom and dad's to help move furniture in the master bedroom to make room for Dad's hospital bed and oxygen. Dad got home between 7:30 and 8 that night. He was asleep when they took his bed out of the back of the transport van. I saw his eyes open a bit as they were wheeling him down the walkway, and then open a little wider when he saw where he was. He eventually saw Kate, and did a kind of double take, open his eyes a little wider, and quietly said, "Hi!" He was back asleep by the time they got him into the bedroom. But he knew he was home, and he knew we were with him, and that brought me so much comfort. We watched them transfer him into the hospital bed, get his oxygen set up, and then the hospice nurse came over and gave us the run down on the medications they had for him. Once he was settled, I went over to the right hand side of his bed, and there was a single tear on his cheek.
Dad was responsive that night. Mom would talk to him, right next to his ear, and tell him, "Dear, Randy is here!" and he'd slowly open his eyes and look around until he focused on whoever was in front of him. He would raise up his hand, grasp our hands. He shook his head when asked if he was in pain. He would nod if Mom asked him if he saw someone. He would only be awake for a few seconds at a time before falling back asleep. The kiddos were nervous around him, which I understand. I remember feeling the same way when Grandma was in hospice. At one point, Mia came in and I picked her up and Mom woke Dad up again, "Dear, Mia is here to say hi!" Dad again slowly opened his eye (he wasn't using his left eye much) and once he focused on Mia, his eyes opened wide, his eyebrows raised, and he smiled so big. The sweetest, most genuine smile. He was so weak that his cheeks were shaky trying to hold the smile, but he was beaming at Mia. It was such a special moment. I wish my kids had been there.
Ryon arrived that night around 10:30 pm. We went to say hi to Dad, and I talked to Dad and told him Ryno was there, and he again opened his eyes, raised his hand and held onto Ryno's. I stayed the night that night, and Ryon went in to say goodnight to Dad, and he said that Dad opened his eyes and mouthed, "I love you," to him, but no sound came out.
Mom wanted to sleep in the guest room, but I didn't feel right leaving dad alone. So mom ended up sleeping with me in the master bedroom. I slept on the side next to Dad, and I watched him all night. The further along the night got, the more labored Dad's breathing got. He would cough a little every now and then, swallow, and then continue to breath. But his lungs were no longer working. His diaphragm was working hard to expand his lungs just a little to get air in. I finally got up around 6 am because I just couldn't sleep, and that bed is so uncomfortable. I tried talking to Dad, and he turned his head a little towards me, but didn't wake up. I decided to give Dad some of the drops to help dry out the liquid because he was starting to rattle. I got a wet sponge to give him some water and to moisten his mouth for him. I talked to him and let him know what I was doing, but he wasn't responding anymore. When I gave him his drops, when I put the sponge in his mouth, when I put chapstick on him, there was no reaction. So I just sat there with my head next to his on his pillow, holding his hand, and cried.
I went to get a drink of water and sat out in the family room for a bit. Ryon came up and we talked. I told him how it felt so strange to have such contrasting emotions. I go from feeling fine and almost numb, to being a sobbing mess. He said, "It's because you're switching roles. You're going from being the caregiver, to being the daughter. It's normal."
Family slowly showed up throughout the day on Sunday. We spent most of our time around Dad. A little later in the morning I noticed Dad's fingertips were starting to blue. We were waiting for the nurses to come, originally between 8-10, then 11, and then 1. Kacey came and picked up the kids around 1. The nurses had just gotten there, and were doing their checks. We were all in the room with them. They first did the pulse ox, which came back at 63. Ryon and Ryan started talking to each other. I knew that was really low. His blood pressure was like 70/20 or something like that, very low. Ryon later told me that after they got Dad's oxygenation, he and Ryan were saying that there just wasn't enough oxygen for Dad to last much longer, and that really the only reason he was still alive was because he had 20L of pure oxygen being delivered directly to him. Otherwise, his body would not have the strength to facilitate that on its own. Ryon also watched her take his blood pressure and noticed she was letting the air out reaaaaaally slowly, and then repumped up the cuff to retake the blood pressure before saying what it was. Ryan left with Mia shortly after that, and Mat left to grab Benson's Nintendo for him to bring to Kacey's.
The nurses finished their checks, they lifted the sheet over his legs, and his knees were turning blue. It looked like there was a big bruise on each of his knees. They then started giving us a quick lesson on how to adjust Dad so that he didn't stay in one position. I was sitting on the couch next to Randy and Kate P, and then Kate L, Ryon, and Mom were sitting next to the foot of the hospital bed. One of the nurses started lowering the head of Dad's bed, and suddenly stopped and said, "His breathing just changed drastically." I heard that, and looked at Dad's chest. When I noticed it wasn't moving, I looked at his throat, because the night before, when his breathing would temporarily stop, his throat would end up expanding and he would cough or swallow, then continue breathing. His throat wasn't moving either. That's when Mom, Kate L, and Ryon all stood up and went right to Dad's side. I stood up and right then, Mat walked back into the room. Dad was passing right then. He had stopped breathing. I was at the foot of the bed, and Mom was right by Dad, holding his face, telling him she loved him. He gasped once, I think it was that agonal breathing they talk about, and then gasped again a few seconds later, and then that was it. Quiet. Calm. Peaceful. I kissed his head and told him it was okay to let go, that I loved him and was going to miss him so much. It was 1:53 PM on Valentine's Day. As I sat back down on the couch, I just said, "He's finally home."
I couldn't leave his bedside. Even after, I stayed and held his hand. His face lost color pretty quickly, but his arms took awhile to lose their warmth. We all stayed around him for close to 2 hours. The nurses went into the kitchen to do their notes and paperwork, and contact the mortuary and schedule pick up of the hospital equipment. The mortuary people came and picked up Dad, and then he was gone. It was surreal. It was painful. We were all in shock.
I often think about when they took him in the ambulance. His blank expression staring back at me. Did he know? Did he have a feeling that that was it for him? Is that why he shook his head when I asked him if I could call for help? I know Dad didn't want to be a burden, he told me many times. But the thought of him being scared, or sad, or discouraged, and not being able to help him just kills me.
When we talk about death, it's always that the person who has passed is in a better place, that they are reunited with loved ones that passed before, that they are no longer in pain. But I have a hard time believing that they don't grieve as well. I can't imagine that my Dad, even free from his pain and suffering, could leave us behind without feeling that loss. Even though he has the bigger perspective now, and he can see us, and be with us, we are still separated. I told Kate that, and she said that she thinks Dad's grieving was when he was alone in the hospital, before we were able to get him home. Because when he came home, he was calm and peaceful. At the Shaker's the other night, I ended up going into a room by myself because I was getting sad looking at pictures of Dad. Mat found me, then went and got his mom because she's good at talking people through things. We talked about the idea of the person that passes grieving, and she told me about her sister Kristi passing. Kristi had breast cancer, went into remission, and it came back a few years later. Karen was her main caretaker. She got so sick towards the end, and her mind was going, and Karen would do these simple exercises with her, like counting and the alphabet. One day they were working through those, and Kristi clenched her fists, and with force, said her name out loud. "Kristi. Lee. McKinnon." She was so proud of herself for remembering her name. Afterwards she looked at Karen and asked, "How do I die?" Shortly after she was just asleep, until she finally passed. Karen said that during that time, she watched her sister grieve the loss of her life. Of her family. Of her friends. And she watched her reconcile and work through her grief, until she was ready to let go. Karen said she believes that the grief happens before people pass, so that when they do, they are fully ready to receive the joy that's waiting for them.
When I think of the time leading up to Dad's passing, all the signs were there. He had no appetite. He was so fatigued. His mind was slipping. Everything we chaulked up to the radiation. And I do think the radiation sped things up, unfortunately. But in some ways, it's better that it was so quick. He didn't have to suffer long. He came to Bass Pro Shops with us for our Santa Picture, and we went to Cracker Barrel to eat lunch afterwards. He got chicken fried steak, because he said he was feeling nostalgic and was craving a meal from his childhood. When it snowed on the Superstitions, he told mom that he wanted to go see the snow, so they drove to take pictures. He was too weak to get out of the car, but he took pictures of my mom posing in front of the scenery, just like he had their whole marriage. I brought him to Matty G's one day, and while we were there he talked about how Kate and I had chosen really great husbands. He was getting very nostalgic, and very reminiscent.
My mom told me that when my Dad got diagnosed, he told her that he wasn't ready to die, and that he started crying. He told her he just wanted 5 more years and he wanted to meet mine and Kate's babies. Then he would feel okay leaving. He missed Charlie by 9 days, and Bryson by 7 weeks. I hope that he embraced Charlie after he passed, and that they spent those 9 days together. And I hope that he and Bryson are still hand in hand, getting to know each other. I know Dad will be with us, but I still have a hard time feeling him. I ask him where he is all the time. Mat says he talks to him, and let's him know that we're taking care of Mom.
Today we stopped by my parents house so Mom could get some stuff. We walked in, and Perry said, "We won't ever get to see Opa again." Man, I miss him. Walking into the house to an empty recliner is hard. Laughing at the kids, and then remembering that I can't tell my Dad about it is hard. Finding pictures, looking through yearbooks, reading stories, and not being able to ask him about them is hard. It's all hard. I miss him so much.
