I know I forgot at least one thing yesterday so let me start with that. The bed. From the minute we got it, it acted up. The up/down buttons didn't want to work. We thought it was a loose plug but it kept happening. No big deal? Well when someone is pain and the bed is jerky and you never know if it's gonna drop 3 inches because it finally catches up to all of your pushing the button..yeah that's a big deal. Well a couple days in we realized it was a frayed cord. So now it's a safety hazard. We were promised on day one that this company would provide "safety, dignity and comfort". Now I can't blame them for my mom wanting to be naked but I can sure blame them for failing on the other counts. (There was finally an offer to replace the bed..maybe Saturday, maybe Sunday...but we didn't want to disrupt her to move her body to a new bed)
I left off just after the bent needle problem was solved. I can't remember the timeline on running out of Ativan--was it Friday into Saturday or Saturday into Sunday? Eventually I will call the pharmacies to get dates filled and quantities, but seeing that for some reason we were now going 3 different places, that's a few too many calls to make right now (did I mention that cell service is minimal inside the house? One more thing to irritate me). The conversation I recall is that I only have one ativan left. We were told to be giving 4 at a time every 4 hours, when we realized we were getting low we changed to 2 every 2 hours and then just held onto the last 2 for emergency. They are still insisting they don't think the ativan is necessary that the haldol should be enough...well we know otherwise..we are watching it in real time. I pretty much beg to at least get like 6 (why I chose that number? Because my brain was not doing math without sleep) I explained that I knew it was a controlled drug but that we really believed it was helping could we just get some until they could see her. Again we are all thinking the end is imminent because that's what they keep telling us. Never occurred to ask for liquid or demand more than a few pills. They ended up calling in 24, which is just 6 doses..one day if given every 4 hours. We send my uncle to get pills, he comes back with just haldol...apparently the pharmacy didn't fill the ativan because it appeared we used it too quickly...the bottle had said 2 tabs every 4 hours. I tell the nurse maybe call it in for a higher strength to get around this, she doesn't do that but does increase the quantity and directions so the pharmacy now gets that it's hospice, just fill the damn thing! (They okayed 84...we didn't end up using any because the new company got us the liquid, which she didn't even need until the death rattle started) Why is it so hard to understand a hospice patient isn't going to become an addict??
So back to the pump..nurse left thinking everything was better. I think she comes back Saturday night but may have been Sunday morning (gotta check phone records) and makes another dumb statement "I realized that maybe the cartridge was empty because it should have run out by now" So why not call us? Why not come back? Again we had another several hours of her only staying rested for brief periods with boluses every 15 minutes. We are taking sleep rotations but we are still exhausted, when she wets the bed we need all 3 (sometimes 4, including my niece) of us to change it and it makes her extremely uncomfortable. She moves too much to use the disposable pads, so every time we have to change sheet out and try to wipe under her with a towel. Not an easy task under great circumstances, let alone with an old guy, a weak girl and a strong girl but with a bad back. So she looks at the cartridge and is sure it looks empty and is clearly confused because the pump still shows that it has 160 or so mls of liquid remaining. She changes out the cartridge and gets mom "resting comfortably". She is so sure that the problem is now solved. At some point there was also some pinched tubing she tried to blame. Did I mention this nurse is 70 and claims to have been doing this since she was 13 (my sister and I are both hoping there was some actual formal education in there somewhere but now I wonder). She decides to keep her on the same dose (2mg/hr 1mg bolus) because she thinks she wasn't actually getting that dose and doesn't want to raise it to the dose she was able to get approved (3mg/hr and 1.5mg bolus)because the company might balk if she needs to raise it again. The logic here is clearly flawed but who is going to argue with her? Our brains are fried and logic isn't our strong suit right now.
Now mom is not getting anywhere near as agitated as when she was trying to get out of the bed Wednesday night but she is clearly in pain. She's moaning and asking for help and we feel like we are failing her. We are at our wit's end and beyond physically and mentally exhausted. And we are headed into Sunday night..day 5. My niece has a hotel room and her boyfriend is with her so she has been able to get some real sleep, thankfully. Dad heads into his room and my sister and I prepare for another night, hoping this empty cartridge thing was the problem and that finally mom can actually rest comfortably for more than 6 hours. But still we are told to press the button every 15 minutes and we are still to give the haldol--there isn't any lorazepam I think we hadn't gotten a chance to get back to pick up the new bottle.
I am not sure what time shit started to go bad again. Maybe we had to change her and tried to do it without dad, I honestly don't remember. But it went bad, lots of begging for help. We called the nurse she made a comment about being there faster if she didn't have to put her uniform on if we didn't mind...of course not just get here, we knew she was an hour away. We opt to try to get some crushed percocet in her until she gets there, because why not?? (again not realizing how bad it tastes or that we could have had a liquid)Mom spits a good bit out and drools some onto her chest...so much dignity. She finally arrives, more than an hour later...and in her uniform..why?? She starts making more Dr. Kevorkian comments. She's making excuses for my mom's pain. Blaming the cancer, that it's bone pain, that it's in her brain...anything but the pump which my dad and both of us think isn't working despite making noises and the numbers dropping. It is possible to act like it's working and not work but none of the nurses want to admit this. I think the nurse may have even left and come back. This could be why she didn't want to come back again at 3:15.
So dad is sleeping through all of this, don't know how, but it's a blessing. The nurse says "I think I am going to have to give her a big bolus to get her past this" she's blathering about how once the pain gets ahead of you it's hard to get on top of it again, yammering on and on about how she was trying to get the does increased because she's a large lady. She says she asked for 10mg/hr, why she would request such a big jump? No idea. Remember she hasn't even tried the 3 at this point. She keeps going on and on about my mom being a large woman, my mom has lost 40 pounds, she may have been considered large then but certainly not now. She reiterates about giving her a big bolus, that she needs to reprogram the machine for a one time large dose and then she'll change it back. My sister has her head in her hands sobbing on the sofa. I am starving, I am frayed to the breaking point and feeling beyond helpless. We have both said something to the effect that we just want out mom to be out of pain. The nurse feels compelled to add "I could lose my license for this". Until then I assumed this large bolus was approved, it's only now that it dawns on me what she is saying and that she wants our approval and basically agreement to be silent about what is going to happen. I am not sure how my sister feels about this, I ask her if she will be ok with this. Let's be clear we know this dose is NOT to make her comfortable but to end the suffering. My sister can't respond, she is still just sobbing into her hands. I only say "I am going into the kitchen to get a banana, I 'm not seeing anything".
Over the past 5 days my dad has repeatedly talked about how wrong it is that we put animals down but that our loved ones are forced to die like this and that should he become terminal the first thing he would do is research what state he could move to so that we won't ever have to go through this again. I think I know what he would do. I thought I knew I would do it, but my mom didn't get a say and I start to wonder what I just consented to, even if it wasn't blatant, I may have not asked for it but I certainly did nothing to stop it. My mind is racing but part of me understands that soon it won't matter it will all be over and I can figure out how to live with it then. I have no idea how long this takes. Will it happen while the nurse is here? But nothing happens. She finally settles but she has been given bolus doses that when all is said and done add up to 34 mg. THIRTY FOUR. The nurse had stayed to be sure she stayed comfortable just as she was about to leave she stirred again, the nurse had to adjust her again, she waited again for her to settle..a much shorter time this time, probably afraid she'd never settle. And she was right. She left us with the impression that due to the massive amount of boluses nothing more would be needed. Less than half an hour after nurse is gone mom was agitated again. it's 3:15 in the morning on Monday, when the nurse left about 2:45 she was planning to get another needle in the morning, blaming the injection site rather than the pump. We had already used the spare needle to replace the bent one. Why no one thought to bring another replacement in case it happened again?? Maybe because it was the weekend?
The regular nurse had one at her house and this on call nurse said she would stop to get it and come back when we had called her again at 3:15. I know I assumed she meant ASAP. Even if she was already half way home, I still didn't think it would be more than 90 minutes until she returned. She didn't end up showing up until just before 8 am (when her shift ended) and she showed up WITH the other nurse.
Let me tell you about those 5 hours. Oh God, I barely remember them and yet how can I forget? My dad slept through most of it...who knows how...shows you how exhausted he was. Both my sister and I are hysterical that we essentially (and I say this with no admission of guilt because never did either of actually consent, we just ignored what was going to take place) tried to kill our mother and failed. Plus she's still in pain. She is screaming out DOUGLAS (my dad's name) she's screaming HELP ME..and we are trying to console each other. Cycling through thoughts about our role in this "crime", wondering why my mom won't just go be with her loved ones, wondering how she can still be in pain. Questioning god, life....everything. And waiting..waiting for this nurse to come back, waiting for my mom to die, how can she not die with all that dilaudid. We can't even sit with my mom anymore. It's like when you just have to let the baby stay in the room and cry itself out because it's too dangerous for you to be around them...we couldn't help her and we couldn't stand to see her this way. We sat about 10 feet away with our backs to her, crying to cover her cries. And then my dad came out. My sister went outside and I told him everything. I knew he wouldn't judge us and he didn't. I think it may have hurt him more knowing we were put in such a horrible spot.
I tell you all of this because if one thing should be clear....that pump was NOT working.
Around the nurses replace the needle, they try to get her settled. None of us can even be in the house. We are inconsolable. I had called my husband at 3:30 hysterical, hyperventilating. The word surreal used over and over. Never in my wildest horrors could I have imagined it could get worse than Wednesday night.
When the nurses arrived they said that David was willing to put my mom in a nursing facility with 24/7 care. My dad jumped on this. I did not. I took the phone from the nurse, my dad had wanted to talk to him but I thought I could be the most levelheaded of the 3 of us, my sister was literally in a fetal position on the driveway, sobbing when the nurse pulled up. He started with his southern drawl and sounded condescending not empathetic and I told him I was only going to accept one thing 24/7 care in our home. He promised us safety,dignity and comfort in our home and that is what I wanted period. He said he would talk to corporate and see what he could do. I said well you let them know this isn't a choice that we had video of my mom screaming and I would release it to twitter and that I had already contacted the local news investigative team (who I still haven't heard from, but with this reception..who knows if they tried to call) and we also planned to sue because we were going to need years of therapy to get over last night.
Meanwhile my husband had taken it upon himself to look up the number and he also spoke to David. My husband is very calm...usually. He would never f bomb someone...he told David he better get a new fucking pump to our house STAT, and reamed him for 10 minutes before hanging up on him.
Apparently David had tried to reach me after this and left voicemail but thanks to horrible reception I never got it. I called him on the way to get the newest ativan script (that we should have had the day before) and I ripped him a new ass...I also dropped the call, so I don't know how much he heard. I don't have the energy to go into that call today but it's where the "resting comfortably" title comes from.
There's a bit more about the nurses either lying to be or just being stupid about the new cartridge and pump and what dose she was now on but that'll have to wait for the final part.
The only thing that matters is once that new pump was hooked up...my mother has not been uncomfortable once, not even during 2 sheet changes. So I guess it WAS the fucking pump. Which Dr.K nurse should have figured out on her own because her handy work didn't work.
She was resting comfortably for real on a dose of 3mg per hour with one bolus of 1.5 mg. A total of 4.5 mg every hour. The other hospice had her getting 3mg/hr with four 1.5 mg doses...9mg every hour plus haldol and ativan and percocet and she was NEVER comfortable for more than 30 minutes. It's almost like the pump wasn't working...
The descriptions above are all my perception. I can not speak to how my dad, sister or niece feel. I just know how incredibly devastating and horrifying and SURREAL this has been. And after the past 4 days I now know it didn't have to be this way and this way is still hard...really hard. It's Friday 1:19. We are almost 61 hours out from when the death rattle started....it's supposed to be 24-48 hours. That's my mom...."don't rush me"
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