But wait there's more

 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"

Resting comfortably

 As I sit here writing this my mom is lying in a hospice bed nearby dying. I have grown used to the sound she is making, known as "death rattle", to me it is a coffee maker brewing in the background, I can't think about it being the sound of her gurgling on her saliva because she isn't swallowing often enough. 

The word surreal has passed through my mind and my lips more times than I can count in the past 8 days.

It's so hard to believe that 17 days ago I was talking to her on the phone, telling her that on my future calls I wasn't going to talk about her cancer anymore, I wanted to go back to our random chit chat. I did tell her that my husband and I were still talking about selling and moving onto their property but weren't sure if she'd make it that long...her reply? "Some days I think I will and some days I am not so sure".

I am not going to go into what a shitshow this has been since she first noticed a bump inside of her vagina, way back in September. So many things that could have been done differently and perhaps affected the outcome. She was diagnosed with cancer on December 20th, I think at first it was considered Stage 2, but after the removal of what was no longer a bump but instead a mass, it was discovered in a lymph node in her groin and now it was Stage 3. While waiting to heal before starting radiation, she felt another bump in her abdomen and had to demand a scan (why a full body one was never done....we will never know). She was upgraded to Stage 4 after just one dose of radiation. It was in her lungs, now she would need chemo. She had to request chemo and radiation be done concurrently, she was afraid delaying radiation would be a mistake. What ensued next was horrible, maybe another blog I will detail. She still remained hopeful, we all did. What else do you have at this point? We kept waiting for another scan to see if the radiation had worked but they wanted to do chemo first. She reacted very badly and ended up needing to skip doses here and there and she could tell the tumors were growing. Her chemo was supposed to be every 3 weeks, the week before her dose scheduled for the 10th she stopped eating again. She barely drank one Slimfast a day. She had stopped responding to the silly gifs I would send her to make her smile on Friday the 3rd. Sunday night she fell and my dad had to take her to the hospital and then it all went downhill fast. At first he didn't think I needed to come, my sister had already gotten there. But then the doctor gave them the news about the scan they finally did. Just her abdomen area. It was bad. Really bad. It had spread to her kidneys, her liver and her spine. There was no way they would be doing chemo that Friday. Her calcium levels were high, potassium low. Because of the liver being involved they didn't think the calcium could be brought down, but by Wednesday when she was discharged it was only slightly high. My dad asked that awful question "How long?" hoping to hear 3 weeks minimally, the doctor's face said otherwise. I booked a flight and was there by Tuesday (talk about another blog story, with the flight delay, etc). 

At the hospital she seemed to know me, when I said "I'm here, you can go momma" her reply was "Don't rush me". She just appeared to be in so much pain and I know from day one she didn't want to live unless she had a good quality of life and since her surgery she only had 5 pain free days before the radiation began. She was begging to be brought home and because Monday night she had tried to bite nurses 2 different times, my sister stayed overnight with her. Neither of them got any sleep. 

Finally it was time for discharge, the hospice bed was supposed to get there before her and even though she was discharged a little late she still got home about a half hour before the bed. We got her on the couch, stripped her clothes (she insisted on putting pants and a bra on before discharge despite the pain she knew it would cause, so we had to change her into a pj shirt) She never wanted us to see her naked and was not too thrilled with this, we managed to do it with minimum exposure. She arrived home around noon on Wednesday with NO medications. Soon after David from Caris showed up to go over paperwork. He "forgot" the handbook but assured us the nurse would bring it in the morning. He never gave us a number to reach anyone if we had problems. This should have been our first red flag. But having never been through this I had no idea what to expect and assumed she'd be fine overnight once we got her medicated. We had told David that mom had a bad reaction to morphine so we wanted something in place of that, as well as the Percocet 10. He knew we had a few Percocet 5 on hand and nothing else.

My father and I ran to the Walmart (keeping in mind everything is a minimum 30 minute drive). The pharmacy didn't have the proper billing info, luckily I knew this had to go through hospice and not his regular insurance because of being a pharmacist. I had to google to find a number and at first got a Caris in a different county but because it was before 5 she was able to transfer me to the correct one. All we wanted to do was get this med home to her to get her comfortable. I headed off to get bananas and call my husband  I  broke down in the produce section while on the phone. Not one but two different women stopped to help me. One spent at least 5 minutes with me calming me and giving me advice. They will never know what that meant to me, and the rough stuff hadn't even started yet. So back to the pharmacy I go, when they told me the doctor had not written the rx for the pain med correctly, I started sobbing at the register. I tried calling Caris again but now it was an answering service who couldn't connect me to the nurse I needed. No one had explained how after hours worked. I managed to get the right phone number with another google search, explained the problem to the nurse and the pharmacist called her. I sat waiting and wondering if it was being handled. I finally got the courage to ask if it was straightened out, thankfully it was. Or so I thought, when the pharmacist went over the drugs with me, only Percocet had been called in, no Dilaudid or any other pain med. For some reason there were 2 antibiotics, potassium, a sleeping med and an anxiety med. Not all of them typical hospice drugs. We didn't give her the antibiotics or potassium, why would we? This is end of life care. UGH. We finally get home at 7. We get 2 Percocet in her and she rests comfortably on the sofa for maybe an hour or so while my uncle who had driven all day visited. He never got to spend any actual time with her. And then all hell broke loose.

This will be the hard part to tell. This isn't supposed to have happened. This is what people don't realize we went through. She did NOT want to pee in the portable potty, we tried to accommodate that request but she got too weak. I think she may have used the real bathroom once, portable potty twice and then she was peeing as soon as she stood so we realized we couldn't let her out of bed anymore. Having anything in her bladder was extremely painful due to the tumor location and the radiation burns. But she would NOT pee laying down. She couldn't wear a diaper without pain and she would not pee on the disposable pads. "It's disgusting" she would yell. So she fought us. And I mean she FOUGHT us. Let me paint the scene. Once she peed herself we had to take her pj shirt off and she wouldn't let us put another on. Remember this woman is MODEST. She would be mortified to know her children saw it all. But she didn't care. She just wanted out of that bed to pee. The bed rails have a gap at both ends of around 10-12 inches, she would scoot on her butt, using her elbows to each of the four openings, whichever wasn't being guarded by either me, my sister or my dad. And she would try to stand up. Remember this is painful for her yet she did it anyway. She was strong. How was she so strong? She had barely eaten anything in nearly 6 days. She pushed her back against my dad and her feet against my hands and arms and it was all we could do to stop her from getting past us to stand. She'd act like she had given up, her eyes were closed and then she make a mad crablike dash to the unprotected opening, where only a pillow was keeping her in. We would readjust and this continued for an hour. We couldn't get her to take her pills. We had to call a nurse who was an hour away. They had suggested we try applesauce or pudding. My mom reached into her mouth grabbed the apple sauce looked me dead in the eye and wiped it on my cheek. She was calling us names, telling us she hated us, telling us we were hurting her and begging for us to help her. And we could only try to keep her in the bed. When the nurse arrived even she had a really hard time getting the percocet in her. After what seemed like forever she managed to get 2 in her, she calmed down and was "resting comfortably". The nurse said her suggestion at the morning meeting would be to put her on a pump because we weren't going to be able to get oral meds in her. I must add we did not have a pill crusher or an oral syringe, nor were we told it would be useful to have one on hand. After the nurse left mom didn't last long before she stirred again, where we were advised to try to get some ativan and seroquel in her. My sister ended up wearing chocolate pudding and I honestly don't remember if we ever got meds in her. We also got zero sleep. This was 2 days without sleep for my sister. And I had maybe 3 hours the night before my flight. 

The next morning we assumed we would hear from a nurse once this meeting, where they would find out a pump was recommended, was finished. We waited but finally had to call. The nurse showed up, I would have to check our phone records to see when but it wasn't before 10 or 11. She tried getting meds in using a syringe and finally agreed a pump was going to be necessary and STAT ordered one to come from a company 90 minutes away. We were told it would be here by 2 or 3. Mom got restless when the percocet wore off (and mind you both nurses were blown away that that was all she was ordered). They added haldol to her meds for the agitation so we headed to pharmacy again. Even after haldol, ativan and percocet she was fighting us to get out of that bed. From midnight Wednesday until 7 pm Thursday we never had more than a couple hours tops, (more like 30  minutes) of not fighting her. At 5 we called to find out where this pump was, we were given a run around and David insisted he would find out what was going on and get back to us. Now I can't remember all the details because A) no sleep B) exhaustion fighting my mom C)the trauma of visuals I won't go into of my mom's nudity and D) fear that this wasn't going to end and we would need to put her in a home, which we promised her we wouldn't. But I know he claimed they couldn't get hold of the driver and he'd get back to us with more info, I do not recall him ever getting back to us. By now my niece has arrived, we tried to convince her not to come, we didn't know she was coming til she was nearly here. I don't know if you can imagine how traumatic it was for a 25 year old girl to see her grandmom spread legged and naked fighting her mom to stand up, telling her(my sister,not my niece) to eat shit (a woman who didn't like to curse). I will never forget the look on her face, I would have done anything for her to not see that. Somehow miraculously mom exhausted herself and was "resting comfortably" with just my aunt and I watching her. Everyone else went to take a break and get some food. (we had not even thought about food or drink for who knows how long). The nurse decided to come before the pump got there rather than wait for word from the driver and she arrived at 7:30 to see my mom sleeping. the driver finally arrived shortly after 8 and we were petrified to put the needle in her because this was literally the first time in 12 hours that she had slept more than 5 minutes, with the exception of one or two 30 minute breaks. Somehow she didn't wake up and we thought the worst was finally behind us. We were giddy from no sleep and being goofy as hell. One day I will blog about the cows lying in a circle story and my mooing at my dad. We knew we needed to take shifts in case this didn't last. One of us needed to bolus her every 15 minutes, that's what we were told. not as needed but every 15 no matter what. Again should have been a red flag...why not make her continuous dose higher so that wasn't necessary. Also why weren't we given liquid meds. I did inquire about this and asked if there wasn't a pharmacy locally that specialized in hospice meds and was told no. The new company reminded me...duh pharmacies can have drugs the next day plus her company can have them overnighted from their own pharmacy and that the local Walgreens did have hospice meds. The new nurse was mortified that my mom was expected to have percocet crushed she said it tastes horrible and it's no wonder she was spitting it out. This in and of itself would have been enough to haunt us forever but unfortunately we are only up to Thursday evening. The rest of that night was what we had imagined. Changing her sheet when she peed was the biggest trauma but didn't seem terrible after the previous night. It was very difficult to do and she didn't make it easy and would struggle against us rolling her, due to the pain we must be causing just touching her. Remember we are bolusing her with extra doses every 15 minutes round the clock and she's still in pain. Friday is a blur. None of us are sleeping more than 2 hours because the nurses have us convinced she doesn't have much longer. My mom is not able to talk to us at all. But we just want her to be confortable until she passes. That doesn't last long. A nurse comes out Friday night is there for hours trying to get her comfortable, I believe she makes a Dr. Kevorkian comment at this point but I am not positive. She gets her "resting comfortably" and leaves. The next day is more of the same, we keep getting advice to keep upping her haldol, they act like we shouldn't bother with the ativan, which is running low. But whenever we skip it the restlessness is worse, she is definitely still having pain and changing wet sheets causes incidents that are very disruptive and hard to get the pain managed again. The same nurse comes at some point and says she realizes maybe the subq needle is bent, that's it's really thin and she may have bent it with all of the struggling thus not getting enough med. Why she couldn't have come back out earlier before we had to call again...I don't know. She finally gets there..hours later and yes that was the problem she spends a little time with us and believes the problem is solved ..resting comfortably, she leaves. 

And now I am getting sleepy it's Thursday June 16th and mom is alternating between a snore and the death rattle at 7 pm. I guess she's not going anywhere yet. So I'll make this a 2 or 3 parter.....

You will understand the sarcasm behind the "resting comfortably" when we get to the story of David and the definition of resting comfortably.