Tonight we held a prayer circle here at home. Our minister, Jane Quandt, is exceptional with helping families remember happy times and good things while preparing to say goodbye. The kids were piled onto our bed, Kerry was perched as close as she could be to Casper, and the room was filled with family and close friends. Everyone who wanted to had the chance to say something they valued about Casper, and for a brief window tonight she was able to really truly focus and hear what was said. She did think the room was foggy, but she heard the words and responded to them.
I was a proud mom to hear the younger kids say they had not been as okay with Mom and Casper being together at first- and then telling her they were glad we worked it out, and thanking her for her role in their lives. (I also loved one of my BFF's asking if aliens had stolen the children and replaced them with a body double). I was a grateful friend to hear so many people saying they were afraid at first of us being a couple and then glad we were able to have so much happiness, even for such a short time. It hurt to hear the pain in all four of our kids' voices as they face another loss. Casper heard it, took it in, and said she was glad we'd had the time to be a family, a large and loving family. She was at peace with the prayer said and made sure hands were all held. Then she was done- time for all of us to let her have some peace and quiet. Fuzzy looked like she agreed.
I wish all families had the opportunity for moments like that. I am beyond grateful that after a bad many days of delusions, hallucinations, fighting, hitting, cussing, and abject fear that Casper was able to be there with us. It was for both of us and all of us. I needed to know that Casper heard she's had an impact on lots of people who love her enough to be gathered around her. I needed the kids to have support if they wanted to say their peace- or if they didn't. I wanted my mom and Casper's brother and sister to be able to have support and to be able to say something if they needed to- and they did. And I needed to know my love would leave this world knowing how very loved she is and was.
In the midst of this have been the incessant questions from those who do not do death and dying for a living. Who don't work in hospice because it's not a job- it is a calling. Hospice staff believe that terminally ill patients deserve to die in the living situation of their choice in dignity and as comfortably as possible. They should be able to do the things they want to for as long as they can. They should have care at home, not wait in a doctor's office. They should have education and support if they want it.
Part of that education is helping families understand what they are seeing and experiencing. This week I've had some reminders that most folk don't know what to expect and don't know what "normal" is at the end of life. As we are living it with Casper, slowly and in waves as the Lewies take over her brain, there are similarities in most illnesses at the end, regardless of diagnosis. Lewies add a special pinch of delusions and hallucinations, agitation and fear. The rest of the symptoms are so much the same I feel as if I am reliving Linda's last week right now, but in slower motion. And I'm feeling awful for our kids who are seeing this a second time at ages when they should not have seen this even a first time.
When Lewy Bodies start to bring life to a close they go on the rampage as far as I am concerned. Their are clinical discussions and descriptions, but they mean the same thing: The Lewy Bodies have overtaken the brain of their victim and have the ability to change their thoughts, respirations, motor functions, heart rate, even temperature. The fear Casper is experiencing over and over is hideous to watch. The fact that she can remember it and realize she is "Losing my mind- I'm going crazy!" is worse. Our hospice team is working night and day on that- literally. She can't remember me, and she gets overwrought when she is disoriented. Just a few minutes ago she punched at me again as she was trying to understand where she was. She thought I was in a bad neighborhood and was horrified that I would even consider being there. She wanted a beer- which she hates- then when I brought one she looked scandalized and told me she does NOT drink. As the night stretches on her behavior is getting worse. That is the extra chaos induced by Lewy Bodies. For all people facing end of life there are huge similarities:
- Appetite changes- patients are truly not hungry. Their bodies no longer need nutrition and systems are shutting down, so food can be overwhelming. Loved ones are not starving them. They don't require food any longer.
- Fever: as a body shuts down and stops filtering, fever happens. It's normal, and it needs cooling measures, not huge interventions.
- Breathing changes: the brain stops sending messages to breathe regularly, and even to swallow, resulting in a noisy breath that sounds awful but isn't. It's a little fluid on the vocal chords and in the windpipe. Casper has been breathing as little as three times a minute for more than a week now at times. She's never been aware of it.
- Loss of sense of thirst: when your body is not using fluids and your kidneys have stopped processing them, thirst is no longer necessary. IV fluids will flood your body with unnecessary fluids that will fill your cells and your lungs, and make you miserable. Casper has had very little to drink since last week. I am not forcing her to die of thirst or starving her- her body no longer wants those things. If she asks for them they are provided. Immediately. But when we do offer, the answer is no.
- Loss of energy and sleeping more: when your body is tired and shutting down, and you are not eating, you sleep. Lots. Most of the day. That is normal. In our house sleep has been a precious commodity because the Lewies have been so busy disrupting Casper's brain that her own internal thoughts wake her, as does noise, her own snoring, even slight movement of air past her. That's actually abnormal, and a special feature of Lewy Bodies.
In our family we are living a terrible loss on a daily basis. Our nurse tonight is sitting and holding Casper's hand, and Casper thinks it's me. As hard as this is, we have the support of a great hospice team taking care of all of us. Watching out for the family and their responses. Keeping an eye on me (yes, I am coping. Maybe in my own way, but I am. And my people have me surrounded near and far. That makes a huge difference). When this comes to a close, as it is trying to do, but slowly, and in Casper's time and in her own way, she will leave here surrounded by all of us. Her angels are waiting. She's seeing them coming to visit. I will send her to them, knowing there isn't a choice and that we have done all we can to make it as okay as we can.
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