Pedal Another Mile

Bicycling, death, life after death.

Anyone know an exorcist? Plus... The strength runneth out.

Turns out rock bottom was several thousand feet lower than expected, and I might not even be there yet. Shit, what I thought was rock bottom last week was merely the first flight of stairs down there.

To those of you who have commented to me and commended me on my strength in dealing with this, you may stop now. The tank of strength ran dry this morning. There's nothing left.

1:00am meds/changing/etc. went well for the first five minutes.  The next two hours found me wishing for an exorcist. Taking swings at me, thrashing around like a rodeo bull trying to get out of bed (with absolutely no pain on her face, by the way), calling me every name in the book ("devious motherfucker out to get her" was my personal favorite), trying to rip the dilaudid tubing from her port, uncontrollable sobbing... you name it. Took two full doses of Ativan in an hour and then an hour where I could give her no more before she finally passed out.

7:00am was only 20 minutes of light abuse before she passed back out. 

I'm not taking this personally - I know this isn't Billy Jo anymore. but that in itself presents a number of problems in itself. It was at this point I threw in the towel. At 3am, while again losing the use of my right hand due to a death grip, I began googling on my phone. The correct term I was looking for was palliative sedation - I stated the other day that the possibility of 15-30 seconds per day of the woman I remember as my wife is no longer worth it. I have never felt more certain of this as I do now. I couldn't wait for the nurse to arrive because I want Billy Jo unconscious until death and had plenty of questions of how to make this happen. Enough is enough - she's suffering and there's no doubt about it. My health (physical and mental) is swirling the drain. This anguish must stop. Now.

Ativan is clearly not working. The game plan now is 1mg Haldol every eight hours plus 1-2 ABH(Ativan/Benadryl/Haldol) suppositories every 2-4 hours.

Regardless, I don't have it in me to wait and see if this is going to do the trick. One of Billy Jo's coworkers reached out to me yesterday and said she had a great 24/7 nurse if I was interested. Hospice home will provide five days of respite care (a short stay at the hospice home to give the caregiver relief). There's options available to me. As soon as I knew this, my will, strength, and determination as caregiver dissolved. 

Erin came out for an emergency session with me today. It was 70 degrees and sunny, so the session took place by walking Wrigley for a mile or so. I'm in such a daze that if I tried to explain it all now I'd surely fuck it up. Long story short - for my own health and safety I must make drastic changes immediately.

The pastor came by as well. Same thing - I have to look out for myself. I have nothing to be ashamed of... I am human and have simply reached physical and emotional zero. Next step is a breakdown requiring hospitalization. While it would make a good story for the book, I am not interested in the least.

Tomorrow at 10:00am the 24/7 nurse starts. Insurance doesn't cover it. I don't care. I will not help like I did with the 24/7 care of last week, assisting the nurse. I am done as a caregiver and back to being a husband. I will sleep in the spare bedroom or on the couch to get real sleep - real rest. I will spend time with Billy Jo, and if the angry disorientated Billy Jo returns, I will tell her I love her and leave the room. When she's agitated I have noticed that if there's other people around, she calms down much quicker. Again, I'm not taking it personally, and I won't consider myself as abandoning her at these times- more like helping her calm down.

Hospice has approved a nurse from midnight to 8am overnight tonight. At 8:00 or so our regular nurse should be here. At 10:00 my 24/7 nurse starts.

So far, the new meds seem to be working better.


Now, for my rant.

I am completely disgusted by this country's aversion to physician assisted suicide, Oregon and Washington excluded. Billy Jo and I never discussed this during our will writing, when we signed DNRs, anytime. Why bother - it's not legal here. Thus, I never knew how she felt about it. I do know she would never want to be in the state she's been in the past ten days.

Why is it that if my dog was in as bad shape as Billy Jo I'd be considered a cruel motherfucker who should have had her put down last week, but this is ok? Shit, a pet's pain is physical - sure there's some emotional suffering I'm sure, but not on a human level. We humans, who supposedly have a right to do what we want with our bodies, are denied that right to choose a peaceful, dignified, and humane end. Instead, we have to degrade into incontinent incomprehensible beings writhing in emotional and physical pain, totally unaware of our surroundings.

If I ever find myself with a terminal illness, I am on the next plane to Oregon, where I will live in an extended stay motel through the waiting period, and I will exercise my right to not end up like Billy Jo is right this moment, and has been for over a week. 


As I wrote this over several hours, I've been told by friends and family that I have not run out of strength. That it takes strength to make this decision to step aside.

Regardless, I am sorry Billy Jo. While I don't feel like a failure (I made it farther than I imagined I could), I wanted to be your caregiver to the end, and I just can't do it. I know the Billy Jo from 1994 to two weeks ago would understand.