I arrived Wednesday morning to be told that Dad had gotten a pain patch of Fentanyl. He was sleeping peacefully. Still no PEG line, though. Aunt Patty had done all she could. She has to leave to go get a COVID test before her cruise. So I sit with Dad while she’s gone. Not thirty minutes later they come to get him for the PEG line operation, finally. I walk behind his bed as we make our way downstairs. They show me to the waiting room where I sit and worry. I watch an entire documentary on the missing boy, Kyron Horman. I didn’t want to know all that. I can’t stand to think of missing children. I can’t sit still so I wander around the waiting room reading everything on the walls. Finally I am told Dad is in recovery and I should head back up to his room.
Dad has done well. Aunt Patty and I are ecstatic at the thought of the PEG line. Surely this will solve so many problems. Dad will get stronger now. We are optimistic. They tell us he woke up in the elevator and talked to them for a minute. Aunt Patty leaves again, to drive home. She is going on a cruise that has been long planned. I know she doesn’t want to leave him but I tell her we will be fine. I am going to stay by Dad’s side. I will sleep here. And so I do. Every few minutes the alarm goes off for something. I swear all I have to do is take my glasses off to try and get some sleep and the alarm will beep. Or Dad will start moaning. He doesn’t do this because he is in pain, he does it just because he can. He has always done this – even back when I was staying with him at home I would have to go in his room and say “DAD. What the heck with the groaning?!” He would blink at me and say “I don’t know.” “Well stop it!” I say, I can’t get any sleep! He would even laugh about it. So I am not worried by the moaning but it does make it hard to sleep when you are less than 10 feet away from him. None of this bothers Dad, of course. The moaning, the beeping, the nurses coming in. He doesn’t care. He snoozes right on through all of it. I sleep fitfully and get a full hour and half between 1 and 2:30. At 4:30 I give up and decide to wander around the hospital in search of a Diet Coke.
Diet Pepsi. Dr. Pepper. Shit. No Diet Coke. I settle for the sugar intake and try three different machines before I find one that will work. I head back upstairs and entertain myself while Dad sleeps on. After awhile the hospital wakes up and the nurses and staff start coming in every few minutes. Finally Dr. Azeem, the hospitalist comes in. He manages to get Dad to open his eyes. He asks if Dad knows where he is. The hospital, Dad croaks. And who is this next to you? He looks at me. My daughter.
A bit later Dad asks me “where’s Patty?” and I tell him she’s gone home for awhile. He nods. Where is David? David is coming Friday Dad. Tomorrow. Another nod. Asleep again, I stand by his bed and smooth his hair back. I do this for hours. I am not good at being still and doing nothing, so I wander around the room and back to his bed – more hair smoothing – I wander out in the hall for a moment and come back. The nurses know me and ask if I need anything? They know I am here for the long haul. No, I say, I’m ok. Respiratory therapy comes in and gives Dad a breathing treatment and then she sticks a small tube down his nose and into his throat to try and expel some of the secretions. Dad fights hard but he doesn’t wake up. I have to hold his arms down as he tries to push the tube out of his nose. He scrunches his eyes up and groans and I tell him DAD, it’s ok, it’s ok, over and over. They go through this every couple of hours and I am beginning to wonder how in the heck I am going to do this for him when he goes home? Eventually I can’t stand to be in the room when they do it. I walk the halls instead.
Thursday passes fairly uneventfully. I wait for the oncologist to come talk to me, and I never see him. Dad sleeps the whole day, only waking moderately when they suction his throat and lungs. I read, I write, I smooth his hair, I walk the halls some more. I go home and take a nap then return. Nothing has changed. I feel like someone is holding all the cards to this mystery and it definitely isn’t me. I only have the two of clubs, someone must have the ace. Who knows what is happening here? Why isn’t the nutrition making him stronger? Why isn’t he awake more? I get no answers as the day goes on and morphs into Friday.
Friday morning sees the hospitalist checking on Dad and telling me “he is so weak.” He tells me there isn’t any way that Dad could withstand cancer treatment right now. As he is virtually non responsive, he wouldn’t be able to get in a car and go to the clinic for treatment. He tells me that all we are waiting on is the oncologist to come talk to me, then Dad can go home. There is nothing more that the hospital can do for him. I don’t read anything into what he is saying. I am still thinking we take him home with home health and he will get better. I realize it might be a very slow, very long process but I don’t for a minute think we are done here.
When respiratory therapy comes in she is alarmed by his low oxygen levels. Even though he is on full oxygen, his levels have dropped to a dangerous level. She gives him a breathing treatment, suctions his lungs, and frowns at the monitor. I am watching closely but I don’t yet understand the impact of what she is seeing.
A couple of hours later sees me sitting next to Dad’s bed, typing away on my computer, when someone new walks in. I look up and see “palliative care” embroidered on her shirt. I close my laptop as my heart drops into my stomach. Somehow I just know what she is going to say. She asks if she can sit down and I say yes of course. The look on her face is plain. She isn’t bringing happy news. She tells me that they – the social worker, the hospitalist, herself – all think that Dad should be sent home on hospice care, not home health. “But the hospital bed has already been arranged by home health” I stutter. This is immediately where my brain went. Practical, as always. And then I ask the difficult question. So you don’t think he’s going to get better? She looks at Dad, then looks at me and says no. I say “but I have been waiting on the oncologist to come tell me what he thinks and he is supposed to be here at noon.” It’s almost noon now, she says. Let’s wait and see what he says, then we can talk again. I am getting antsy because I desperately want to take Dad home, but I realize that without any answers that isn’t going to happen.
Noon comes and goes. One o’clock comes and with it the arrival of my brother. Thank goodness. I don’t have to bear this burden alone. Not ten minutes later the oncologist walks briskly in. He introduces himself and we talk. He says Dad is not strong enough to withstand treatment. He says without treatment Dad only has at most a week to live. We are stunned. This is the answer. This is why Dad isn’t waking up. We talk a bit more, he says he is so sorry and he leaves. I ask my brother if it’s ironic that the cancer doctor is bald. Then we both look at Dad and lean into my brother’s strong shoulder and ask him bitterly “when did it become just US?” We were always such a strong family unit of four. But that strength, passed on to us by our parents, is what will see us through this. We are still a team. We are still Bullworker’s children and that is no feat for the weak. We talk quietly and make the hard choice. Dad will come home, on hospice care.
The rest of the day passes in a blur as we arrange to take Dad home. When we finally get him there and the ENT’s are transferring him to the new hospice arranged bed (the home health one sits forlornly off to the side of the living room), Dad wakes up. His eyes are open. He is looking around intently. He stares for a while at the pictures on the wall. He sees me, he sees David. He is home and he knows it. I believe this gave him a great deal of peace. I do not know if he knew he was dying. His last twenty four hours are just for me and my brother to remember. I won’t write about them. But he knew he was home and that we were all with him. We didn’t know it would only be 24 hours.
I am comforted now by the fact that I believe he is in Heaven, waiting for my mom. He’ll have it all sussed out and be there to welcome her when it’s her turn. He would have wanted it that way.
I love you Dad. I miss you like crazy. I’ll take good care of Mom for you, don’t worry.
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