Silent Night followed by a cage match.
Thank you thank you thank you for a quiet night.
I said I was going to go solo last night and hope for the best. At 10:00 Lena texted me and said she was very worried about me and if I needed her...she'd be in her van in our driveway. Awww. I was quite honored that she'd do such a thing for me, so I brought her out some water, some food, and a bucket to go in if she needed it.
Just kidding - she set up camp on the futon in the office, just in case things got as bad as Friday night. They didn't.
We had a little issue with her restlessness and confusion for 11:00pm meds but not too bad, and after that, she slept through to 7:00 this morning. I slept on the edge of our bed, she slept on the edge of hers, and Wrigley slept right between us on the pillows wedged between them.
When I woke up, she had leaned over so far at such an odd angle that I knew straightening her out was going to be very painful. We hit the pain button, waited ten minutes, and hit it again. Surprisingly, things went well. Changing, meds, all of it. She was awake for a few minutes, then dozed off. Success.
Then Lena went home.
It is 9:00. I started this post at 7:50 or so. The Ativan had absolutely no effect on her until ten minutes ago. I was fighting a raging, emotional bull. I'm typing this with one hand. She has a vice grip on the other one and has pulled it to her face. It fell asleep so long ago I'm sure it will never work again. I called Hospice and the nurse is on her way over.
Before this calming, I had to actually yell at her to get through the confusion. I didn't want to, and I felt bad for a split second, but I told her the only way I could keep my promise of having her die in her own home is if she stopped fighting me. I told her that me allowing her out of bed would be the same as me hitting her with a bat. That I have never done anything to harm her and I'm not about to start now. She burst into tears. Lucid or not, it tore me apart. In a year full of hardest things I've ever had to do, this one has currently taken over the top spot.
The nurse left at 10:00 or so. She spoke with the doctor. We are going back to scheduled Ativan every six hours plus (depending on the timing) up to two more doses in between as needed. Even if this means she is out cold 24/7 until the end, The possibility of 30-60 seconds a day of lucidity every 24 hours isn't worth the risk of painful injury, regular pain, confusion, agitation, fear, etc... As sad as I am to say this, Billy Jo's quality of life is gone. She always said quality over quantity, and I could not agree more. This is just awful.
Vitals are beginning to go down. Pulse is still 88 but is very weak in her feet. No sign of mottling (skin color changes - a sign of circulatory system failing) yet. BP was checked twice, once at the beginning of the visit and once at the end.. 78/58 and then 85/60. Very faint, too.
She is sleeping, I have calmed down. I think it's nap time. I know people are going to ask why I didn't call them - I'm not sure what they could have done in this situation - if anything it's better no one had to see her that way. I did call hospice right away and she was here quickly and was able to get the orders changed on the meds, so I did get help.
The past two weeks have probably taken five years off my life. There's a post coming at some point on what my plans are if I ever find myself in Billy Jo's position, but that's for another time.
I really hope my evening update says two words: