I totally and completely lost my shit last night, and how I got there is a long and complicated story; bonus points if you make it all the way to the end.
Saturday was our roughest yet. I think that Mom’s hit the stage that I knew was coming but that I’d hoped she’d pass before she got to; her pain is such that nothing we’re doing is making any difference. When she was awake, she was in agony. She couldn’t get comfortable; moving her was excruciating (for both of us) and the change of position didn’t relieve her pain. The relief that she’d been getting from the upped dose of Methadone wasn’t helping anymore, and she’d taken just about as much of the breakthrough meds as I had on hand. All of her awake time was spent moaning and crying, both in pain and, I think, frustration.
At about 5 o’clock last night, she called me to her bedside (I was on the couch reading) and told me she was done. She took off her ring to give to me and gave me some very explicit instructions about a few things. She told me she wanted to not hurt anymore, she told me she wanted to be with Stephen again (Stephen is Meadmakers father. He died at 19 when Meadmaker was still an infant), and then she asked me if I’d stay with her until she died.
We had a rough night. Between 11 and 5, I was up with her 8 or 9 times. She was hallucinating that someone was breaking into the house, she was frustrated because she couldn’t make the t.v. do what she wanted (I finally convinced her that she would be more comfortable with the t.v. off, and she agreed), and she was speaking incoherently (at one point, she wanted me to tell her why it would be better to put pudding for a Down’s Syndrome baby in one type of cup than another).
I called the on-call hospice nurse at daybreak Sunday morning and he came by around 9. One look at her and he told me that he’d be back that afternoon with a morphine pump that should, Goddess willing, bring her the relief she needed (and, hopefully, that relief will allow her to step over).
She rested for a bit after that, though I won’t use the adjective “comfortably” to describe it. I think she was focused on the relief the nurse promised her was coming.
The technician who was to install the line arrived at about 1:30. It’s a pretty complicated thing to do, I guess; it’s not something that the nurses can do and it was, in all respects, torturous. Mom’s pretty severely dehydrated and very emaciated, so finding a viable vein was the first hurdle. She was still in a lot of pain at that point, and poking and prodding at the tender inside of her elbow wasn’t exactly high on her list of things she’d like to do that afternoon (especially when the scalpel came out). After a lot of stress and strain, and more than a little blood, the line was in and the meds were being delivered.
I had been lead to understand that the relief would be immediate, but that wasn’t the case. After about an hour, she was still significantly uncomfortable, and I called the nurse to ask him to come back to adjust the meds again. He did, and it seemed like things were finally starting to get better.
Just when you think it’s safe to go back in the water….
Mom sent me home at about 7:30 last night with assurances that she would be fine. She was better – not great, but better – and I promised to come back this morning. I packed up and headed out, but was only home for about half an hour when my phone rang. Bill was calling to tell me that he’d moved her and pulled her line out.
My first reaction was undiluted panic. We’d not gotten her pain completely under control, but we were well on the way. I knew that line coming out was going to be followed by the pretty much crushing and relentless return of what pain we’d managed to beat back, and that, more than anything else, terrified me. I got on the line and called hospice, and the nurse, Glenna, called me back almost right away. When I told her what had happened, her first words were “oh, NO!” She’s not qualified to put the line back in; they had to get someone from Infusion Solutions to do that, and she wasn’t sure there was anyone available. If they couldn’t get someone from I.S. out, we’d have to call an ambulance and bring her to the hospital which is, of course, the LAST place we want her to be (not to mention the particular brand of white-hot hell that transporting her would have been, especially given that her pain was creeping back).
Despite the fact that Punkin was crying and asking me not to go, I got back in the car and headed over (and not more than a little furious at Bill, I have to admit). When I got there, I could see the pain was creeping back up on her, and she had me lean in so she could tell me that she didn’t realize how much pain she’d been in until it started to go away. Now, of course, it was coming back, and the nurse was still about an hour out (though, about ten minutes after I got there, Glenna called to tell me that the wonderful lady who’d put the first line in was coming back, but not until 10:30 or so; we’d have to figure a way to manage pain until then).
I gave Mom a couple of doses of her breakthrough medicine before the nurse arrived, and she had me give her another dose on top of that. We all cleared out of the room so the nurse could do some reikii (Meadmaker and Bobbie were there, and I admitted that my energy was BAD just then because I was so pissed at Bill) and, in the kitchen, I pretty much told Bill off. I understand that accidents happen all the time, I said, but this was fucking careless, and I couldn’t take the cavalier attitude he had about the whole thing. He’d not been with her for the last three days, hadn’t seen the pain I’d seen, and hadn’t been there to hold her through the lovely torture session it took to get the first line in – it wasn’t just a matter of a simple I.V. line; this thing has to be installed. He countered that he didn’t appreciate me on my “high horse” and that it was likely that Mom had dislodged the line herself by moving her arm around, then he left the kitchen. At that point, I didn’t really care what he did or did not appreciate, and I left it at that.
Bridget arrived at about 10:15 and we all headed back in for support. After she got the old dressing off, she said it didn’t look good; she wasn’t convinced she could get a line in, but she’d try her level best.
I was only able to stay for about five minutes of the procedure before I completely lost my shit and left the room. I made it to the back porch before I burst into tears. Listening to Mom moan – not only in the pain that was quickly coming back but also from the minor surgery – AGAIN – on the tender inside of her elbow – was a bit more than I could take, given what I’d held up through during the last three days. I thought we’d FINALLY gotten a handle on this, and to have to start again from zero felt so patently unfair. I was horrified at the fact that Mom was suffering – more and again – and enraged that there was, quite literally, nothing I could do about it.
Meadmaker came out and held me and, about ten minutes later, Bobbie came out to say that Bridget had managed to find another vein and had gotten a line in.
I thought I might die of relief.
I went back in after repackaging as much of my shit as I could. Bridget assured me it was a good line and that they were able to start her meds back up at the level they were at when the line came out – she didn’t have to start again from zero. She and Glenna packed her arm and Bridget left. Not long after that, I took off, after Glenna assured me she’d be back around 1:30 to check on the bleeding and to adjust the dosage again.
I came back this morning at a little after nine. Ellie, our primary nurse, was here, along with Meadmaker and Bobbie. Mom was still uncomfortable, so Ellie adjusted the meds up again. By the time she left at a little after 10:30, Mom was more comfortable and the entire energy of the house had changed. I don’t think she’s going to stick around much longer.
Ellie promised to come back this afternoon to check on things and adjust meds again if necessary – I think it will be, as Mom is pressing her boost button quite a bit.
I’ll write later about what happenend after Ellie left; I’m still neck-deep in it now, though, and I’ll need a little distance from it to be able to represent it in words.