I had a pretty good night with Summer last night. We went to bed as normal, I wrote my post and stayed up to make sure she was not fidgeting around. She seemed fine.
Around 2:30, the nurses came in and did their normal “roll” of Summer’s position in bed. As I reported in a quick edit to last night’s post… They were happy to find that her innards were now moving along. I laid there on the sofabed while they got her cleaned up and moved around.
Around 5 they came back in and checked her over. It was about that time I stayed awake and put away the bedding on my sleeper.
Summer started waking up soon after and we started to have a pretty good talk. She was asking questions about things in the room. “Whats behind that door?” she asked as she pointed to my right. She was pointing at the bathroom door and I told her that was all that was in that room. She then looked confused and asked how do we leave? I got a little confused and scared by the question. Is she asking a question about healing or how to walk out? “Well, there is a door behind me that goes to the hallway… And then there’s a door to the garden… and that leads to the parking lot.” was my slow and deliberate response. I was hoping she would lose interest in this line of questioning and we could get back to the easy conversation to fill the time. (Some Dad right? After all that praise I got today!) It worked. No messy conversations
She was doing pretty well and we were going through her normal checklist of gear on the bed. Stuff animals… Check. Squishmellow… Check (Once again asking where that came from) Watch charged? Check. Eventually, I gave her the cell phone and let her go to town while we talked. I think she sent some messages off.
After about 45 minutes to an hour… She started holding her head. I asked if she wanted anything. She will never say yes. So, like many times before, I walked up to the nurse’s station to tell them that she needs some pain meds. Methadone again is the preferred choice. Once she was hit with a dose, she was pretty quick to drop back into a deep sleep. I wandered and got some coffee and fat-free yogurt (Thanks Lynette!) from our assigned spot in the fridge.
Summer was out a solid 3+ hours. I was happy about that. She had a full night of sleep for the most part and any rest is good when you know guests are coming.
Angela showed up around 11 and Summer was up shortly thereafter.
Around 1230 the guests started hopping in. It was great to see the Brodahls and more DeeMack friends along with a big pile of SIUC guys who came all the way up from Carbondale to visit. Quinn, a graduate of her same 8th grand class at St Joe’s stopped by with her family. It was nice catching up (I hope Analisa remembered the brownies!)
Soon enough, my whole family came piling back into the Hospice Center and we took over the outdoor space. Father’s Day was supposed to be held at my sister’s house in Springfield today and everyone scrapped it in lieu of coming to see us. That was really nice. While Summer visited with her friends, there was a lively conversation going on outside.
Towards the end of the afternoon… Summer was holding her head again in pain. She, once again, was hesitant to ask for meds. I walked down and got a liquid shot of Tylenol ordered up. Once it was taken, I waited in hopes of seeing some improvement in her pain and irritation. She was hanging in there talking and making wisecracks with me. I got a couple of smiles and an eye-roll, so I knew my job as Dad had been complete for the day. As for her relief from the meds, it never really came.
After an hour of her restlessness, Ang and I decided that she needed some Dex. We would normally not do this because we want to have her wait as long as possible so that her sleep will match ours as we stay with her… But this time, she needed it.
A few minutes later the nurse came in and tried talking to Summer and wanted to give her the oral medications as well. Summer was having none of it. She is curling sideways and covering her face. The nurse said this is the first sings of Terminal Agitation. Her migraine symptoms that had now set in include sensitivity to light and sound along with skin irritation. I had watched her arm hair stand up on end for a good chunk of the last hour… I thought she was cold. When Hazel came in to grab something before leaving, she dropped it on the floor and Summer visibly had a full-body tremor.
Today, if I had to guess, might have been the last day for any guests who might have plans on hearing her talk, listen, or communicate as they are used to.
If you google Terminal Agitation… It’s not good. It’s an end-of-life phrase used for cancer patients.
Angela is with her tonight and I hope that she can experience that first thing in the morning clarity that I have witnessed a few times over the last week. I came home with the kids to get some sleep and will report back in the AM.
If you are still planning on visiting… I think its safe to say that afternoon and contacting us ahead of time are the two biggies. THANK YOU!
Thanks for all the Father’s Day messages. Today, with my family around the table, I compared declarations of me being a great Dad to famous generals. They were just guys doing their job until extraordinary circumstances made them heroes. I know for a fact that all of my friends would do the same things during a time of crisis. Don’t for a second think that I did anything more than you would do if you had to.