The Tables Have Turned

My dad went in to the doctor thinking he had strep throat or an infected gland and came out yesterday after three surgeries with stage IV cancer, a trach, and a feeding tube and a consult with an onc tomorrow.

There is a certain helplessness to being a caretaker that extends different from being a patient. As a patient you are never separated from the pain, the horror, the difficulties, or the reality of what you are facing. And as a caretaker you can "take shifts" from the demands of all this. You can clean body fluids and body parts and meet physical needs and then LEAVE.

However, there is also a certain urgency I feel watching my dad be in pain. I told his palliative doctor, "My father's suffering is causing me to suffer." His pain hurt me.

And bringing him small joys makes me happy. He likes to swish with coffee because he cannot eat. He doesn't even want to put coffee IN his feeding tube, he just wants the taste of coffee in his mouth. It brings me INFINITE joy to do this for him.

There are things I do that I find repulsive - like getting vomited on or snotted on through his trach - and I just wipe it off. There are things I do that I am terrified of doing and I do it anyway, because it MUST BE DONE.

And I remember caring for my own body in this way- but doing it with much less love and much more grim determination. I cared for my own wounds or damage, or I give myself injections because if I don't I will die. I do it for my father because I LOVE HIM and I wish to keep him alive and comfortable. There is a sense of gratitude that I CAN give this to him. He took care of me and helped me and now I am doing it for him.

Meanwhile, I am also noticing, with much unpleasantness, that the stress of this is certainly causing more of a lupus flare. I have mouth sores and had to drink milkshakes for the last few days. I TRIED to eat solid food yesterday and the eating almost drove me to tears.

When I sit WITH the emotions - truly SIT with it, I feel overwhelmed and so sometimes I simply stay with what we are doing in the moment. We are right now.

I am sitting in the darkness. Yet, as I told someone, I know that god made the dark as well as the light. And so I will sit with it until the light comes back. I DON'T want to do this alone. I feel very lost. There are unspeakables - and so I don't.

I feel incredibly selfish to be adopting a cat- but I wanted someone or something to touch me and give me human connection and to keep me feeling full of LIFE and joy. I want to feel joy again without feeling like I'm swallowing the world inside my throat every day.

Nothing feels right. I don't feel right. My skin feels too tight and I'm cranky and tired and angry and sad. I don't want this.