Today …. where do I even start?
Rewind to last night, I guess. Horrible. Literally up all night and things got progressively worse until I called hospice at 4am. Long story short, after talking through everything, nurse had me give 2.5 mg of morphine and said she would be at the house asap. It took almost an hour for the morphine (+ lorazepam!) to even touch Mom’s agitation. I always knew my mom was a fighter, but she has given the word new meaning.
No sleep, no food, no liquids, and screaming for hours and hours – and hours. Beyond completely exhausted, full of lorazepam… and she was still fighting to try and sit up and even stand (neither of which she was capable of doing). Even her caregivers who have done this for years have said they’ve never seen anything like it. She’ll let us know when she’s ready to give up the fight, but apparently she’s not ready yet.
Once the nurse arrived at the house, we realized that the problem was Mom’s bowels. She was completely backed up and having severe pain, but of course, she couldn’t tell us what was wrong. In hindsight, I feel like I should have seen the signs and realized what it was, but we all missed it. What a nightmare it must be to have horrible pain and be unable to tell anyone what hurts.
Long story short, nurse gave her a suppository and had me give 5.0 mg morphine for the next two hours. She had two BMs and was *finally* able to rest. Between the morphine, Ativan, and outright exhaustion, she’s still asleep (11pm).
Her regular nurse came out this afternoon, took vitals, checked circulation, etc., and everything looked good. BP perfect, clear lungs, strong heart rate, no circulation problems. She said she honestly does not feel we are at the very end yet and that with the right meds, there’s a good chance we can find a middle ground between screaming and sedation. She mentioned Kobacker House… on a temporary basis. Let’s face it, without 24 hour nursing care, it would be very difficult, if not impossible, to get the meds tweaked to control her symptoms without knocking her out.
Tough decision, but honestly after seeing the agony she’s been in for the past few days and particularly last night, I felt we had to do something. Allowing the suffering to continue wasn’t an option, and sedating her just didn’t feel right if there was another avenue to explore. I am sure if she knew what was going on, the only thing worse than the state she’s in now would be turning into vegetable laying there waiting to die.
The day was beyond emotional. Her caregivers really struggled with the idea of her leaving and the fear that she wouldn’t return. I called the social worker and she came out to talk to all of us. I don’t think there was a dry eye in the house, but when it was all said and done, I believe everyone felt that this was our best option right now. As I said, neither of the alternatives looked very attractive.
It was after 8pm before the EMTs arrived to transport her, but by 9:30pm, she’d had a bath, was in a fresh nightgown, and sound asleep. They had arranged for a “sitter” to be with her in the room at all times so she is never left alone. Jess and I were given a tour of the house, sat with Mom awhile, and talked to the nurse about what to expect.
Not much will happen tonight. The goal is to let her rest until she’s ready to wake up. At that point, they’ll “follow her lead” as far as next steps, working to find the right combination/dose of meds to calm her without sedating her.
I hope I’m not kidding myself, but I feel confident in this decision, and believe there is a good possibility that they will be able to help us. I am told it is not unusual for people to come in for short stays for this very reason. Jess and I left there feeling as comfortable as possible under the circumstances. I truly feel she is in good hands until I get there in the morning. Tonight, I’ll be able to get a good night’s rest so I can stay on top of everything that is happening tomorrow.
I’ve said it several times and I truly believe that I’m being guided by a Higher Power. If left to my own devices, I would have crumbled days ago. I’ve done some crazy things in the past several days that were clearly a function of my being worn out, yet I somehow I’ve been able to maintain the focus needed to take care of Mom. That’s not me at all… I am definitely being guided each and every step of the way.
After working four straight 12’s, my dear Susie asked if she can come with me tomorrow – on her day off – to sit with my mom. Yes, it’s clear that these folks are not just Mom’s caregivers, they truly love her and they’ve become our family. It felt really strange to turn off Mom’s light and walk out the door tonight, but I have faith that we’ll be back there soon…
Now I’m going to bed. If I’ve calculated correctly, I’ve now been up for 32 hours straight. It’s amazing what our bodies are capable of when it’s necessary. When my head hits the pillow, I’ll be out and boy is that going to feel good.