From my written journal ... Palliative Care Visit November 24th.
I think I need a break some days from being a Caretaker. We met with one of the Fellows — meaning a Doctor who is going to specialize in Palliative Care after he is done with learning and applying his knowledge in a setting like the VA Hospital.
Doc Fellow wanted to know what was on Rich’s mind today. Well let’s say this, this Fellow didn’t really know Rich and so asking him that question would lead to a conversation that had nothing to do with Palliative Care.
Rich needs someone to direct and focus him. So Rich talked about the pain from where his PEG had been. The Fellow jumped on that and I interjected that perhaps it hurt more in the past two days because someone had been hunting, shot a doe, and had cleaned it in the woods before getting his wife to come assist him. Dr. Fellow then immediately dismissed the pain as a pulled muscle. Probably dismissing is not a good idea with Rich.
After Dr. Faris [thank goodness] showed up, … Dr. Faris is Rich’s psychologist and has worked with us for about 6 months…he was able to help direct Rich a bit more.
It came back to the happiness issue. Rich said he has never been truly happy since he came back from Southeast Asia. Ever. There is no joy in his life.
At this point I become skeptical. He has never ever had joy? What about the times he and are are kidding around? What about the things he plans to do with his grandkids? What about the joy he feels when he is able to visit with his daughter or the joy that Lily brought him this summer? This was not happiness? Laughter, the twinkle in the eye, the hugs given to friends and the laughter…is not joy or happiness?
At this point I become skeptical and see Rich as a Drama Queen. In front of the doctors he is all gloom and doom. In social situations? He laughs, he kids, he smiles and when we are alone he is not the same man sitting in that room. So I am confused.
Dr. Faris inquired about our incredible relationship together. Rich huffed a small almost sarcastic laugh. “I can’t make love to her, she has had medical issues and an infection…and then I don’t think she is into it, not like I want to be into it… So know I just don’t feel anything.” He made another noise that relayed his frustration? disgust?
All I know is I glanced at the two doctors and saw them both quickly look at the floor. Dr. Faris’s face turned red. I know the question he was asking in regards to our relationship was not about sex, but about the caring and deep love we had for each other. Dr. Fellow, well, by his expression, this conversation was going in a direction he had no idea how to control.
Rich went on to repeat his horror stories from Vietnam. I sat back, already feeling like a heel and listened to the same thing I’ve heard so many times over and over. What was coming from him were flags for mental health issues and not Palliative Care issues. He was unhappy, he felt tired, he felt like he couldn’t do anything, his cancer had ruined his life.
I wanted to stop him. When he said those things about me, I felt the slow burn and considered leaving the room. But I wanted to see what progress we could make with Palliative Care.
Dr. Fellow soon jumped up and excused himself. He was gone for about 20 minutes and actually some of the tension left the room. Dr. Faris was able to converse and steer the conversation back to what Rich was hoping PC could do for him to make things easier.
I suggested that it seemed to me that at the moment his mental health and this time of the year were overwhelming Rich’s life and that we should try the Physical Therapy and Tia Chi and then return to Palliative Care to see if these things worked for helping Rich’s balance and strength issues.
I also felt that there needed to be a bit more intervention at this point … right now… with Mental Health.
Dr. Faris agreed.
Dr. fellow came back in and we tried to get back on track. Dr. Fellow explained that Palliative Care was not a fast moving process. One of the big issues he wanted to bring up today was a discussion of the future.
What would Rich do if the cancer came back? Had he thought of end of life care? What was his thoughts on dying? Living?
We'd addressed those issues already we told Dr. Fellow. We had an Estate plan drawn up as well as end of life plans, also known as Living Wills.
I wonder where this direction is going. Rich's really recovered quite well from all medical stand points, yet he insists that he isn't.
I wonder if I were in his shoes, how would I feel?
I guess I would certainly feel lucky to be still alive. And that doesn't seem to satisfy him at all.