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.