Pardon my french, but holy.fucking.shit.
We reached a point today where my shit has been lost. I am a madman. I'm not getting the answers I want. I cannot protect my wife. The suffering is endless. The meds are doing nothing. She's awake more often than not, and a wreck most of that awake time.
She's still trying to get out of bed. Nothing stops her. The hallucinations continued, the agitations, continued, the attempts to go over the bar tumors first continued.
The nurse got an adjustment to the meds done this morning. We were told to give it time and see if it helped, because the dosage changes would take time to take effect.
This is where I began to lose faith in hospice. If the doctor is right, Billy Jo has 7-10 days left. They should not be spent making incremental changes and waiting a day to see if they work. She is suffering. I am suffering as a result. If this keeps up then the last 2 to 3 weeks will have been spent with her suffering. This is not the point of hospice.
Oh yeah - perfect vitals today. 122/84, 90 pulse, 16 breaths per minute. Are you fucking kidding me?
Anyway, with a confused, agitated, dangerous Billy Jo awake most of the day, I reached my boiling point. It happened to come when someone at hospice was trying to talk me into bringing Billy Jo to Hospice Home. I asked why that was necessary. I was told it was so the nurses could make medication changes faster. I asked her why that would even be possible since we had to "wait and see" if the new combo/doses would work.
I asked why she couldn't be permanently sedated. She is, after all, now a danger to herself. The answer I kept getting was that they prefer to keep the patient comfortable, to which I replied that to be comfortable, this patient needed complete sedation. Got no answer. At this time I noticed Billy Jo was trying for another rail jump so I told the lady I was hanging up and videoing it. Only caught the tail end, but it's six minutes of confusion, tears, anger, etc. I was going to put it up, but it's not how I want her remembered by you that know her, or even you that don't. Just trust me, it's bad.
I talked to Erin at the height of my rage. I said something I told her before - I am very close to risking life in prison to end this suffering, if no one else seems to care to. To make sure she isn't suffering.
Let me tell you - there is nothing more effective to say to get a social worker over. When she arrived, I explained to her that of course I couldn't do it, but this is the level of despair and hopelessness I have sunk to, and she needed to see it. I showed her all of the video. Later, as we all stood in the bedroom, I said that if something wasn't done tonight, that I would ask all people present (Erin, Lena, Brian, and Margaret) to assist me in throwing her in the back of my truck, driving a few miles west, and tossing her in a ditch along a farm road to freeze to death - as it would be more humane.
As if on cue, the angel known as Dr. Leyva, Billy Jo's palliative care doctor right up to entering hospice, read my blog from this morning. She could tell I was way far gone. She said she had put in a call to Dr, Orenic at Joliet Hospice. He called her back. She called me back after talking with him.
Enough bullshit - the big guns are out. Phenobarbital suppositories to begin immediately. Tonight. Nurse was on her way. Dr Leyva asked why I hadn't called her earlier. I wish I would have - she's awesome and has our backs. She even commented on one of these blog posts. My scrambled brain has not allowed me the sense to realize she was but a phone call away. I am to call her tomorrow to give her a status update.
That call was at 5:00pm. The nurse was due to the house at 6:00pm. At 5:40 I was awash with emotion. It was surreal. What I have been trying to get for days - total sedation, total peace, was going to be here in 20 minutes. If it worked, and I want nothing more than that, it also meant that I had 20 more minutes of a conscious wife, likely forever. I told her I loved her and she'd finally be getting some rest. She said OK, and then her final words to me were "I'm sorry".
I left the room, stood at the entranceway in tears, watching as the first suppository to put her in terminal sedation was inserted. Then I went downstairs and barely made it to the bathroom before vomiting. A lot.
After puking I took my Kolonopin with a 1.25mg xanax chaser. I also craved a cigarette for the first time in almost five years. There were three smokers here and I resisted the urge. Barely.
If this finally works, she will be at peace. Her mind will be at peace and her body should soon follow.
It's the hardest thing I have ever done in my life. I have effectively ended her suffering, at the cost of consciousness, no matter how shitty it was. But it was the final act of love and protection I could offer her. She would never have wanted what has been happening. Margaret even said Billy Jo is up there on her list of patients not going peacefully, just behind those that needed restraints.
This cancer has fucked my wife royally for 17 years. All I asked for after coming to terms to her impending death was a peaceful steady decline. She couldn't even get that.
I don't want to have to do another one of these posts. The last I checked on her, she is completely out - it seems to be working...so far.
I have told Margaret to wake my ass up today if anything gets out of hand. We have been instructed to call hospice immediately - not wait until morning.
People - death in movies and on TV medical shows are doing a disservice. It's nothing like that. At least not in my first close experience with it. It's hell's hell. Make sure your loved ones know your wishes. 48 states with sticks in their asses may not allow physician assisted suicide, but maybe just maybe a living will can include the absolute request for immediate palliative sedation in cases like this. Like a DNR. She wouldn't want what happened the past week at all.
I'm certain I will never be in this position if terminal.
My hope tomorrow is to do two separate posts - both good/happy/uplifting in nature. One, a story about why she is awesome and so many people love her. Those of you who have never heard the story will love her more. The second is something I received in the mail for her from a cousin, that I hope helps smooth the way to heaven for her.
I really don't want to do a post that says Phenobarbital didn't work either, or I may liveblog while tapdancing in the middle of I-55.I bet my nightmare happens again tonight.