A Warrior's Rest

By now probably everyone knows that Rory passed away on Thursday morning. I'll try to write up how the week went, so those who are interested have a better idea of the timing of things. Also some of the tender mercies and miracles from the week. I'm likely to accidentally leave out a lot of the details, so please feel free to add to this (and any other) blog post in the COMMENTS section below.

Sunday morning after Rory couldn't swallow anymore, the on-call nurse suggested that I try giving her some children's Tylenol by syringe to help keep the fever down. Even if she couldn't swallow, she would be able to absorb some of the medication just by having it in her mouth. Rory wasn't at all happy about taking that medication; must taste nasty. Not knowing how much to give, and because it would be staying in her mouth, I gave half of one small syringe which was apparently 0.5mL. When the nurse came later in the morning she had a bit of a laugh, because Rory needed a full 15mL! Fortunately for me, the nurse was the one who administered the medication and incurred the not-so-happy glares from her.

Because of her nausea, we also started a new medication: Haloperidol. Apparently they typically use that medication for end-of-life to combat dementia and agitation due to mental changes and anxiety, but it also helps with nausea. However, during the day her agitation only increased and her reaction eventually labeled "adverse" so the medication was dropped. More on that later.

At the end of the morning visit from the on-call nurse, she told me while upstairs (out of earshot from Rory) that she was definitely in the DECLINE stage. That meant she would continue to have difficulty swallowing or speaking, her appetite would continue to be low or non-existent, and her body would continue progressing. The nurse noticed several "pauses" in Rory's breathing even with the CPAP on, so she suggested that we forego using it. She said the machine would no longer help much regulating the breathing, and if it had any effect at all it would be to prolong the process.

That morning we also started giving Rory a liquid version of Dilaudid, her heavy-duty pain medication that she has seemed to tolerate well. However, by the end of the day she was also actively fighting against taking that medication by syringe; again, it must not taste good at all. But, I was able to "encourage" her to take it several times through the day and she didn't exhibit any pain symptoms.

The afternoon was full of visits: Stake Presidency, Bishop, ward members, choir director, extended family, and others. Although she couldn't speak, she was able to respond by shaking or nodding her head, and turned towards the voices of those who were there. More evidence that hearing is one sense that lasts past some of the others.

Monday the "agitation" symptom was more pronounced. As the body's shut-down process progresses, sometimes the brain isn't ready to follow suit and there's a bit of a battle going on. The minor shaking is sometimes referred to as "terminal tremors." I caught her trying to sit up and get out of bed a couple of times, small spasms and shaking. The medication we started on Sunday was supposed to help control that agitation and movement, but increasing the dosage during the day only seemed to make them worse. So later that afternoon was when the doctor and nurse decided to stop administering that med, and moved to a different one: Midazolan (Versed). They started at 0.2mL per hour, which they said was a tiny dose, to allow us to watch for any adverse reactions. Fortunately there didn't seem to be any, but I was giving the bolus (extra dose) every single half hour to try to keep her calm. The medication was administered continuously through a pump, with a sub-skin needle in her abdomen. It would work for about 26 minutes, but the pump limited the extra meds to only every 30 minutes. At least it seemed like something she could tolerate, and helped her calm way, way down.

Thinking that some of her agitation might be due to pain, and because it was getting harder and harder to get Rory to be able to swallow the liquid medication, the doctor directed that Rory get a second Fentanyl patch. So instead of 100 micrograms per hour, which I gather is pretty high, she would be on 200 micrograms until we had to move to another pain medication.

Although she was calm, much of the time her eyes were open. Rather than have her stare at a blank wall, we started playing videos for her on the TV. She really likes the Blue Planet series, and having those on did seem to capture her attention and hopefully diverted her from the anxiety and agitation I suspect she was feeling.

Kaeli finally asked about the medications ... didn't we stop the chemo in an attempt to improve her QUALITY OF LIFE, but now she was essentially being sedated? What happened to that quality? We talked about having the couple of days over the previous weekend when her symptoms were minimized, when she was able to talk and walk and laugh and be with us. Unfortunately, we had very quickly moved into the COMFORT CARE stage; the quality had been there, but not for nearly as long as we all wanted.

On Tuesday Rory's hospice doctor visited. Apparently home visits aren't all that common, but this doctor is just that way and tries to visit with all of her patients and families. I think she's also at a Director level, and does quite a bit of traveling and training for other agencies. (Monday she was driving back from Idaho when we were trying to figure out the medications.) It was short, but nice of her to come. After walking upstairs (again, out of earshot from Rory) I asked what kind of timeline she thought we might have. She said because Rory was young and "has a lot of reserves" compared to her older patients, it could be as long as two weeks, but probably less than that. (I later did a bit of internet research - the scariest kind - and read that the human body typically can only go for 3 or 4 days without water, which she wasn't getting.) The nurse that came a bit later was more realistic in her estimate of likely only having a matter of days.

Rory's agitation grew throughout the day. Several times she pulled herself up over the rails of the bed, or was half hanging off and onto the recliner chair. Other times she just wanted to sit up and hunch over. As I was texting the nurse about these symptoms, she said the doctor had been doing some research and was formulating another plan. I got more than a little bit worried, sad, even started to feel guilty since I was the one who had signed off on this whole hospice thing. (A few days prior Rory had resisted the idea of hospice, saying, "They are just going to drug me until I die.") I laid down next to her, just holding her, and we had a 1-way chat. I told her how sorry I was for putting her through this, how I felt (and still felt) that it was the best and only decision. Through my tears I told her that I loved her, and I hoped she would be able to forgive me for what she was going through. I even asked her to somehow let me know, someday, that she had forgiven me.

Yeah so that afternoon was ROUGH to say the least. I was having trouble getting through to our nurse (probably helping other patients). Eventually I called the main hospice number to send in my report again, and ask for some help. During the middle of all of this the social worker happened to text me, asking how I was doing. I told her how rough things were, and about the guilt I was feeling. She also tried to contact the nurse, but without success. She was about to have another on-call nurse sent out, when ours finally texted that she was on the way. I'm pretty sure she's no longer pain-free, I texted. I'm almost there. Now she's even crying, the pain is so bad. Finally the nurse arrived. The doctor said that it had been a couple of days since Rory went off her pain medications "cold turkey"  since she couldn't swallow as of Sunday morning, and she was very likely experiencing some severe withdrawal side effects. I guess that made sense. So the nurse said were going to increase the Dilaudid dose ... BY A LOT. Remember we were at 0.2mL per hour? The nurse re-programmed the pump to go to 2.0mL per hour. And I almost continuously gave another 1.0mL every 30 minutes. Then we watched. Rory definitely calmed down a lot, which was a big relief. But, she still was acting agitated and in pain. So not too much later the nurse got the OK to increase the dosing again, this time to 4.0mL per hour. For you math nerds, that's 20 times where they started.

A couple of hours later the nurse checked in by text, and I told her that Rory was still writhing and rolling a little bit, but not as much as before. I also had a thought that she was overdue for her 5-year kidney stone battle (she had been on a regular schedule for quite awhile ... at last check there were stones formed, but not yet moving) and that explained to me the severe pain breaking through all the medications she was on. There was no way to know, but those symptoms of trying to move positions, powering through meds to bend over sideways, hunching over the bedrails, all of that seemed to point to kidney stones on top of everything else. They made the decision to add Dilaudid to her pump, so it would be continuously administered and I would have the ability to give a bolus dose if it appeared she was in pain again. So in the middle of the night an on-call nurse came and hooked up another pump. Within just a few minutes she calmed right down. As the night progressed I had to give fewer and fewer of the bolus doses.

During the night, Rory had several times where she was "gasping" in her breathing. When I was snuggled in, I could also feel her heartbeat racing and strong, then would slow, then would be almost imperceptible, and then it would suddenly get strong again. Had some more nice 1-way chats with her again. But by morning her breathing was almost completely normal, which is something she hadn't been able to achieve during sleep for years without the CPAP. Almost like something in her mind or body had re-booted that breathing signal.

Wednesday morning the nurse checked in with me again, asking what I would like for the hospice team to do. I suggested we let Rory sleep for the morning, and maybe get some help changing clothes and another bed bath in the afternoon. Even though parts of her body felt cool-ish (color wasn't lost, so there was still decent circulation), other parts were strangely hot.

Had an email exchange with one of my cousins, who said she'd felt the nearby presence of our grandparents and her father. I knew her grandma Miller and aunts were near. Charisse said that earlier that morning she had decided to put on a pair of our other grandma's earrings because she felt close, too. It was a sweet moment knowing that so many were nearby to be with Rory during her transition.

About noon one of the pumps sounded an alarm. It was the pump for that anti-agitation medication that was first started at that really low dose, and then cranked up by a factor of 20, and then we decided to have the nurse wait to come out later in the day. So it had completely run out. Thankfully I was able to maintain her calmness with a couple of added bolus doses of the Dilaudid until the nurse arrived with the new medication. This time the mix was five times more concentrated, so the bag could last for several days or even a week.

That afternoon the hospice social worker stopped by the house again to talk with the kids. She got some of them to open up a little bit, and it was a good discussion. I'm grateful that family support is such a big part of the hospice program. Kylan chose to sit in the recliner next to Rory for most of the afternoon to play his Switch games. :+)

An aide stopped by in the afternoon and I helped her get Rory into clean garments. She provided another bed bath, and we talked about her family. She mentioned that seeing all our family photos on the wall for the past few days had inspired her to set up a family photo session for her own family, since she didn't have a family picture that included her 2-year-old grandchild. I'm sure Rory was beaming on the inside, knowing that her passion for family photos had impacted one of her caregivers in that way.

As the afternoon and evening wore on, Rory's breathing started to include a gurgling sound. We were told that was likely a sign of the final stage of the process. A bit of again-scary internet research led me to the moniker "death rattle" to describe the sound, which is caused when the patient can't control the oral secretions and it becomes part of every breath. All the research says it doesn't cause any distress or discomfort for the patient, but it can be quite disconcerting for family and care givers. I raised the head of the bed which seemed to help a little bit. The nurse said my description made it sound like the final change was taking place, and she was going to send a nurse out to check.

The on-call nurse came and took some vital signs (blood pressure, temperature, etc). She checked on medication levels, talked to Rory, and then talked to us. She concurred that Rory was in the final, "active dying" stage. She said it was very hard to predict timelines, because only Rory's body would determine the remaining length of life. "It could be two days, but I think it will be much less time." In fact, she said to call her directly if Rory passed during the night, rather than going through the main hospice phone number.

Eventually I got everyone sent to bed, and I took up my spot next to Rory on the bed. It was a tender time to just hold her the way she liked, stroke her hair and face, and have a bit more 1-way conversation. (I probably had more 1-way conversation with her over the past couple of days than in the entire 26 years of marriage, and more than 30 years of being best friends.) The rattle got more pronounced and her breathing slowed. For what seemed like a long time she stopped breathing altogether, so long that I actually looked at my watch to note the time. I teased her a bit when she startled me with a big gasp, but only a few minutes later I did note the time of per passing as 12:24am on Thursday, 13 February 2020.

Kaeli and my parents had asked me to wake them if Rory passed during the night, so I knocked on a few doors. Colton said he wanted to stay asleep. Caiden came in to be with us, as did Kelsianne. Eventually Kylan also came in. I had called the nurse, who arrived around 1:00am and started the preparations for the mortuary who were also on their way. The nurse did a little bit of cleaning, positioning, and made notes in her log. The mortuary directors arrived close to 2:00am in their suits, left a rose, and were very respectful and understanding. Rory was put onto their gurney, and a beautiful quilt used to cover her from the cold and rain outside. It took the two of them plus myself and dad to get her up the stairs, and then it was done.

Everything else that happens after this moment is going to be added to the old family blog that Rory used to write. Please feel free to follow along at https://baxterfamilycircusof8.blogspot.com/. There is a lot from later on Thursday and the rest of this past week that I will write about eventually. You won't want to miss out on the service, miracles, and amazing wonders that I will include there. Please forgive me if it takes awhile for me to post there, though.

I am so grateful that Rory passed away in our home, and in my arms. We were and are such huge parts of each other's lives, it is going to be more than difficult to adjust and move forward. But, at the same time I know she is pain-free, happy, and preparing a place for me to join her someday. I love her, forever and always.