Patient Experience Day 33: The Not So Happy Birthday

I got out of the shower in my process of getting ready to go over to see my father for his Birthday. I noticed my phone had gone off, so I checked it, and there was a text from my mother at 11:35 am, it read:
My stomach dived deep into the pit of my stomach and I could feel my heart begin to beat faster, and it seemed difficult to catch my breath. I immediately picked up the phone to call my mother.
In the conversation exchange between my mother and I she informed me that my father woke up, had an egg for breakfast, decided to take a shower, and as he was getting out of the shower that he called her to help him get his leg over the edge of the tub. He was winded, tired, and she believes he just got scared. So he went and laid down in bed and told her that he just wants to die, call hospice, and no company. We decided that my father at least needed some company and something to maybe take his mind off of his diagnosis, if at least only for a moment. So I finished getting ready and was on my way.
When I arrived my father had been in his chair watching football, but snuck back into his bed. I opened the door and knelt at the side of the bed and asked him what was going on.
My father said to me, “I don’t want to be a burden to your mother. I know she loves me, but it’s no way for her to live. It is no way for anyone to live. To have to sit here, watch over me, help me, and I have to depend on her so much. It is no way for you to live either. You have enough going on that you do not need to be worrying about me, calling everyday, trying to stop in, and helping your mother and I. I don’t want to live like that. I told you, if I can’t live as I always have, then it is my time.”
My response was simple: “You are my father, I love you, and you spent 30+ years taking care of me, so it is the least I can do. This is what I do dad, I help people. If I can’t help you out of anyone, than what good am I?”
Father, “You promised me that you would support my decision. This is what I want. I don’t want to fight with your mother, will you make sure she listens?”
I then probed a bit further to my father to try and figure out the root of this episode and he continued, “I want chicharrones the other day. They were in the cupboard and your mother wouldn’t get them for me. She told me I needed to eat something more nutritional. You tell me it doesn’t matter what I eat, as long as I eat. I don’t want to be treated like a kid. I am a man. I am not going out like that.”
I rebutted to my father and said that since he doesn’t have much of an appetite it is more just about eating what he feels like versus the best nutritional option. I also told him that mom is right because she wants to make sure that he is also eating something that is going to give him the strength and his body the nutrients it needs to fight the battle inside of his body.
My father continues that he just wants to be able to sit in his chair, watch the news or sports, and get up to get something to eat if he feels like it. He feels so bad due to pain from being constipated that he just is over it.
My father told me to go have some of the meal my mother made. He would rest until we were finished, then he would come out into the living room.
After my mothers spaghetti meal my mother left to go run and errand and get some relief. I sat in the living room with my father.
My father began with, “What makes me think I should live another 15 years? What makes me any better than anyone else? Why should I get to beat this and be here longer? When it is my time it is my time. I can’t cheat death. What I can do is tell cancer I am not going out like this. I am going out on my terms. The way I want to go out of this world, not the way this fucking cancer wants me to.”
I just sat and listened.
He continues, “Son I want to know why you were afraid of me. That was the only thing you ever did that hurt me.”
I responded, “Dad I was never afraid of you. I was afraid of disappointing you. Of not being able to live up to the expectations you saw in me. I can handle anything in this life, but I would never be able to handle seeing disappointment in your eyes due to me.”
My father gleamed at me, “Son, you could never be a disappointment. Look at everything you do, you have done, and I know that you will do. You have a gift to help so many other people. You can leave a mark on this world that will last long after your body leaves it. You could never be a disappointment.”
I reply, “I know that now. It took me a long time to get to that point of knowing that no matter what I did, as long as I did my best and was happy, that everything else would work out. That in the end, that was all you ever wanted, and that was what your ultimate goal was for me.”
I admitted, “Dad I don’t want you to go yet for my own selfish reasons. I cannot imagine a Sunday night going by that I do not get to hear your voice and speak to you. Or as I am making a life changing decision in asking for your advice and running it past you. There is no one else in this world that I lean on as I do you, and if I can have a few more months, then I will always take it. However, if this is what you ultimately want, then I support you and will make sure that Hospice is considered. You do know that you may not get Hospice, since you can physically leave the house, right? You may just have palliative care until it is that time.”
My father looked at me, “You mean I can’t just go on hospice?”
I told him the differences between hospice and palliative care. And then asked, “Dad, you always told me I should just try and not quit something. Why don’t you go to your doctors appointment, try three more infusions of chemo, get the next PET Scan, and if no response, be done. If you have a response, then reassess?”
My father said, “Maybe. I will think about it. Let’s see how I feel tomorrow.”
I spent a few more hours there. We watched football, we talked about some of my fathers other experiences. We shared some laughs, some music, a dance or two, and some laughs. We had mini-cupckaes since he doesn’t have a big appetite. Sang happy birthday to him. I got his iPod set up and placed some more music on it.
My father exited stage right to his bedroom. I gave him a kiss and a hug. I told him I loved him. I also told him that if he wants chicharrones to tell me and I will put them in the drawer next to his bed, so he can reach them.
My father laughed. He said he loved me and would talk to me tomorrow.
I went to the vehicle and got his birthday card. I left it on the table for him to read later. I hope this message will ease his mind when he wakes up and reads it later on.
Hopefully his 69th birthday ended on a good note.
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM

#PtExp #PX #cancer #hcldr #hccosts #hcsm

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