Hospice Home - the first four hours
Well, here we are. I'm on the uncomfortable vinyl couch, and Billy Jo is once again passed out in bed. A bed sporting some new equipment since our arrival - protective panels and a movement alarm.
Her meds were upped to 120mg phenobarbital every 4 hrs (720mg/day) and 4mg haldol every 4 hrs (down from 6 hours). This appeared to finally do the trick, until about 30 minutes ago. I had passed out from exhaustion and yet somehow woke up to her trying to get out of bed. I hit the nurse button and she was given valium via IV and is knocked out again. The alarm and panels were put in place in case this happens again and my spidey sense doesn't wake me up. The doctor was immediately notified of the agitation and I await what the result will be. He will be notified immediately of every incident that occurs. So far, I still don't think she has any clue she's here.
When I got here I was brought into an empty dining room with a team of staff. They wanted to know how I was doing. Oh boy did I tell them. I tore them new assholes for 45 minutes. I told them a man should not have to mention that he was thinking of mercy killing his wife to get the attention of hospice. I told them that at my weakest moments, which are also Billy Jo's most serious moments, when we need help the most, that I should not be the one screaming and pleading for medication changes. I told them I need the promise that they are not going to send her back home and leave me to be caretaker again, no matter what the paper I signed says (that these stays are temporary). I can't do it anymore. She dies here. I told them I will probably not sleep the first two days I am here because I do not trust them. I told them they need to re-earn my trust. To give me hope again that they have my wife's best interests in mind.
During the meeting, the hospice doctor told me this is now nearing the max dosage for phenobarbital. If this+haldol+valium does not work, they move to the IV barbiturates they talked about yesterday. He mentioned that Dr Leyva (Billy Jo's palliative care doctor before all this started) would be meeting with him today.
Wrigley can be here. Four hour visits, as per the rules. They'll take down the 'please knock' sign when she is present. I'll wait until tomorrow though. If Billy Jo stays out out like she's supposed to I may not even have her come. She's staying at Lena's house again - I hope she doesn't lead Lena's two dogs into the path of a skunk again like in September. I'm likely staying here until the end. They said I can eat her meals so there's no reason to leave.
The director has been ordered by someone higher than her to steer clear of me. Good move.
I want to clarify that I feel zero guilt for this decision to transfer her here. A week ago the guilt would have torn me apart, but now there's no other option. She'd forgive me - I hung onto that promise as long as I could. I couldn't risk seeing her suffer one more minute while a flurry of phone calls and nurse visits tried to figure out a solution that was unsolvable at home. She was dying in the ugliest way possible.
While still in that dining room, I told the team that if they fuck up and therefore cause me to feel guilty for making this decision to put her in here, by continuing to not put my wife's comfort first and foremost, that the wrath I will bring down on this organization will be epic.
It was calming and exhausting to rage like that, but I felt relief I've been seeking for days.
Dr. Leyva just came into the room to pay us a visit. I chatted with her for a few minutes and thanked her profusely for her involvement and assistance. I don't know where we'd be without her. It was so great to see her.
Billy Jo truly looks at peace right now. She's soundly asleep.
A final note for this post:
PLEASE PLEASE PLEASE DO NOT SEND FLOWERS OR ANYTHING OF THE SORT HERE.
She will never see them. They will wilt and die. They are expensive. If you feel you must spend money to show your love or support for Billy Jo, I ask that you donate to our Stand Up to Cancer team page or that you write a note on her SU2C star, which can be done for as little as one dollar. Flowers die - your dollar may save a life.