Saturday, March 26, 2011


I'm going to miss seeing spring bloom. I've been watching from brown buds of wooden trees to tiny peeking leaves. Pink blossoms opening up. White white white petals falling over themselves. I'm going to miss seeing spring in DC.

They've moved dad over to the palliative care floor. It's 4 floors down from the outpaitent oncology floor he was on. I guess the physical relocation is fitting. He wants to go home. There's no more chemo. The radiation treatments he received relieved some pain of the tumor on his kidney. There's also ketamine, which when my sister told me, brought me back to the days of ravers and glow sticks when kids spoke about taking horse tranquilizers. She said he'd come home with heavy pain meds in a lock box. We joked that we could sell that shit on the street for a pretty penny. And other pain meds.

She says they've talked to hospice to understand what they provide. While we searched for in-home nurse care that wouldn't break the bank, we found nothing. They live in the countryside, where families do the caretaking. Not a lot of freed-up nurses. But I guess hospice visits often and whenever we hit a "rough patch" and need them to call -- which is apparently what happened to us while we were taking care of him before: learned how to set up the TP feeding (bag to a line, line to his port) and had to deal with air bubbles (omg, are we going to kill him if one gets in his line?! omg there's air in the bag! omg, I can't pull back on his port to draw any blood to check if the line's clear - is it clogged?) and then him vomiting all night long. Hospice can come to help. And there won't be vomiting now. The stomach pump takes care of that. TP in, stomach bile out. There is no use of his GI tract now, which the palliative care doctor says puts him on the shorter side of the timeline. If they said 6-12 weeks 2 weeks ago. Well, we can do the math.

Hospitals are not known for their planning skills we're learning. Last time we checked him out, we found out on the day that he'd be released. A nurse from home care, a rep from home care plus, a case worker - all disorganized, all unplanned, all a disarray to us. Yesterday they said he would come home on Tuesday, with medical equipment needing delivery on Monday.

Mother Nature is not helpful. The weather conditions have fucked my family over. Eight inches of snow last week, a friend came to plow and missed the driveway, the thaw that has turned their country driveway into a mud pit. How to get my dad home, how to get the hospital equipment to the house, how to ease the coming and goings for hospice care. There was a panic in my sister's voice. A defeated, worn out, almost crazy discussion with her last night. My mom has hit the end of her rope.

There have been new financial troubles and revelations that post-dad might not be as rosy as hoped. This brings out anger and resentment, fear and desperateness. I've imagined his frail body in the bed in the house, hooked up to machines, and not being able to help myself from pinching him -- hard, repeatedly. I'm angry at his selfishness, his stubbornness, his childish decisions that he made in a complicated marriage. But I won't pinch him. It's the pillow experiment - talk to the pillow as if it's him, punch it, get the anger out. "You've become a different person to me. Who are you? You are not the father I knew and loved, adored, and suffered the strongest love-hate relationship with. Who are you? Why did you do this? How could you?" I'm wrestling with this now.

A shell of a woman, I told my therapist. I'm coming and going and not sure if I'm coming or going. I'm finding I can't cry at home - home from work, be brave and be funny when calling my sister and mom and then entertain myself with Deadwood. I can't cry in AA meetings - too humiliating for my pride. I can cry one-on-one with a friend or (terribly unfortunately) my boss or the therapist. I can sob in the therapist's office. And then, clean myself up, and head back to the metro and back to my office. The therapist said I need to do something that will fill me up this weekend - fill this shell of a woman. What do I do? I asked her. I feel helpless right now. How do I process this? What is death? I watched a National Geographic "Moment of Death". It did nothing for me. How did I get dressed this morning? How am I walking from the metro to my office? Someone in my agency offered me a new job. I can't even think about that.

I feel so far away from his changes. I will likely be shocked. I feel so far away to help well. My sister and mother have been so strong. I'm trying to feed off of this routine of work, meeting, TV, sleep - because right now is a vacation. When I get there this week, it will be hell. A complicated, sad, frustrating, overwhelming hell. But I have to be there. I have to be there for him. I'm terribly scared he'll be sad or afraid. I want him surrounded by love, despite the mistakes he's made.

There's today - a sunny, lovely, chilly spring day in DC. There's tonight - maybe an AA meeting. There's tomorrow - 4 months sober, AA meeting with friends to cheer my chip, brunch with other friends, laundry, packing. There's Monday - work from home, head to the train station, go to Philly with my boss. There's Tuesday - all day Philly events with boss, train station, back to DC, back home. There's Wednesday - an early flight to Wisconsin. And then... there's I have no idea. The great unknown. The void and the whirlwind. The calm and the up-every-hour. The sun through the window and the possible pushing cars out of mud in haste and panic. The test of strength and endurance. As my sister says, this is a marathon. Energy drinks at the wayside, energy bars, but keep moving forward. My alcoholic mother is an energy sap and spew of negativity. She's been fucked over and is fucked up. It will be a sister thing. Patience when we lose ours, listening when all there is is to spit exhaustion, holding, crying, cursing, trying to remember to eat, cooking, feeding, caring, waking, napping, and maybe some work in there if I can.

I don't want to go, I can't wait to go, I need to go now. I hate him, I love him, I'm scared for him. Coming, going, sitting. Mostly I have no idea.

No comments: