Semi-week update

I probably should have done better during the week to record more details, but the general story will have to suffice.

Thursday morning we met with the hospice nurse for the official admitting process. She was very kind, took her time with my parents and me, and answered all of our questions the best she could. She also gave us a summary of what the end-of-life process typically looks like, so we will recognize the changes and symptoms. Rory was not part of that initial administrative meeting, but the nurse did check in on Rory before leaving. She also brought in some supplies (protective covers, gloves, liners, etc). After some discussion, I was finally convinced to schedule an aide to come in that afternoon/evening to help Rory with a bed bath, since I already had plans to take the three younger kids to a basketball game. However, sounds like Rory didn't "hit it off" with the aide at first. Looking back, I think Rory was mostly upset that someone was coming in to do things that Rory felt like she could still do for herself. While I was gone with the kids that night, Kaeli spent the evening with her mom. Sounds like that was mostly OK, until having to deal with a couple of bouts of "accidents." Rory later talked about how grateful she was that Kaeli was there with her, knew just how to help, and cleaned everything up. Rory makes sure that the typically-thankless job of cleaning up is definitely a well-thanked job. I hope Kaeli hows how deeply that Rory loves and appreciates her. Rory has had many discussions in the past week with providers and visitors talking about how kind, gentle, patient and understanding Kaeli is, and how wonderful she will be as a professional provider.

Friday turned out to be a really good day. The nurse stopped by with a few additional supplies. While at work I got a call from the social worker wanting to set up an appointment. At first I thought we could wait until next week, but eventually we went ahead and scheduled it for that same day. She was also very nice, and met with the entire family. We had to do some administrative paperwork, but she also helped us all participate in a little bit of an introductory discussion. The hospice team will continue meeting with us for about a year to help through bereavement, but we'll be transitioning to another social worker eventually because ours is about 7 months pregnant. :+) I went back to work for a bit, until a somewhat frantic call from Rory asking me to come home right then. When I got home, we just sat on the bed and talked for awhile. She had had one of her "special dreams" (she's had many over her lifetime) and she needed to talk about it. Speaking was a little difficult, but she talked about seeing a wheel with lots of spokes. Each spoke was a person, and she clearly saw that the location on her spoke was very near the end. There was other meaning that she couldn't clearly communicate to me, so we just sat and talked and cried and comforted each other. It didn't take long before the phone was ringing again, and when I got back to her she asked to meet with the kids to talk about the dream. She was still able to walk and started chatting with Caiden. The call I took was hospice delivery saying they were coming with a bed, so I was re-arranging the large sitting area to make space. Rory said that her discussion with Caiden was really, really good. She was talking with Kaeli while the bed was set up, and they kept talking even after my aunt and uncle arrived with dinner. When they were done talking, Rory was still feeling well enough that she walked all the way up the stairs to visit and hopefully was able to eat a little bit. After picking up Colton from work, we settled in for our planned family movie night. Kylan and Colton both claimed they didn't remember ever seeing Princess Bride, so we paid the whopping $0.97 for the Amazon rental and had a good time laughing together.

Saturday morning I helped with Rory's morning medications, and she was definitely struggling more. Perhaps Friday wore her out. I was gone for Army stuff all morning, but managed to get through all the medical and administrative stations fairly quickly and was excused for the rest of the day. I think it was really good for me to be home, as Rory was definitely not doing well and needed help. Then the parade started! Her closest cousin came for a visit with her cute daughter and husband. Rory was in-and-out quite a bit, but they still had a nice visit. Tyler's boys arrived at the house with Kari's daughter, so they hung out upstairs playing games with our boys. The next arrivals were Bart (my youngest brother) and his family, who had been out visiting with his aunt-in-law who was also in the hospital. Bart said that his daughter really wanted to come and visit with Rory, and they shared some sweet time together. My sister, Kari, has been visiting from Oregon to help with Tyler's family. She's also been giving some great first-hand updates from her time at the hospital with Tyler. She and her daughter also came down and spent time with Rory. They found out that they share some common medications! I think Kari had brought Heidi (Tyler's wife) with her from the hospital, and she spent some time upstairs with her boys since she hadn't seen them for awhile. Before leaving, she also came down and sat and talked (mostly in whispers) with Rory. Later Rory told me a little bit about their conversation, which had confirmed their deep personal connection. Heidi and the boys all gave hugs before heading out. By the time all those visits were done, was Rory ever worn out! We put her to bed pretty early, and she may have been asleep before we even got to the bed. :+)

This morning has been rough. I woke up about 3:00 and noticed her hands and arms were very warm to the touch. The thermometer confirmed a fever almost to 102 degrees. I was able to get her to take a couple of Tylenol, although I later found that she hadn't completely swallowed all of them. But, by the time I checked again a couple of hours later her fever was back down to 99.6. I got her up to the bathroom, which was an intense struggle. I decided to move her to the hospital bed out in the big room, as several people are planning visits today and I didn't want her to have to move again. I tried to help get her morning medications, but she wasn't able to draw any water through her straw. She asked for juice (she really likes the mango varieties) but I couldn't get her to drink any of that, either. She kept looking at me, and when I encouraged her to drink she would nod like she thought she was drinking, but it didn't work. At one point she got really agitated because she could feel that she was going to throw up. I got the bucket to her just in time. So, no morning meds or juice or even water so far. The nurse talked to us about using swabs to provide water when Rory isn't able to drink or swallow, but I don't think we have those yet. So, I've texted the nurse and may end up calling the on-call office if I don't hear back soon. I went ahead and moved her CPAP machine so she can use that in the big sitting area, and have set up one of the Echo Dot speakers where we can play ocean sounds for her. I won't be going to Army today; that absence has already been pre-approved. I also moved the small recliner chair over next to her bed so I can lay down next to her. For now she seems to be comfortable, or at least just sleeping.

As you can tell things are happening rapidly around here. If there are additional updates I may or may not have time to type them into the blog for awhile. Hope these updates are helping you keep up with Rory at this time.