The journey from surreality to reality
I think I've been doing myself a disfavor. As I said yesterday, even though I know Billy Jo is dying, when she's awake she's normal enough that it's easy to sail the river of denial. Well, denial isn't the right word. I wasn't ignoring the outcome, but rather it didn't feel like it was even a possible one. Like mortality didn't exist. A dream.
These past few days have put me on a high speed train into reality. Sure, she ate a few bites of spaghetti this afternoon, and she had one rabbit turd, but otherwise there is a marked decline in both her appearance and energy level. She looks like a person that you'd expect in hospice care - a person nearing death. It has sort of caught me off guard. How that's possible is beyond me. I write daily on this blog to update friends, family, and even strangers on her last months alive, and how I am dealing with it - how it is affecting me. Why am I surprised all of the sudden? The lack of eating or the sleeping 16 hours a day didn't make it click for me. Even the rapidly swollen abdomen didn't make it click for me.
No, it was Tuesday night/Wednesday morning and the appearance in her face the past few days that have made it click for me. She has understandably lost a lot of weight, and if it weren't for growing tumors it would be a lot more. But you can really see it in her face now. The look of a person without much time left. And it has made me sad and afraid.
"But Dave, I thought you were at peace."
I am at peace, because Billy Jo is at peace. But my fear now is whether or not I have enough strength to help Billy Jo through the remainder of this journey. I am afraid the strength I built up is of a finite amount, and it's being spent at a faster rate than it's being built.
We talked a lot late this afternoon. I decided to read her the Caregiver's Guide "When Death is Near" from Hospice. The one I ignored for the first five days. Erin (the social worker) and I thought it might be a good idea - so Billy Jo could understand what I was "looking for" the past several weeks. I read it cover to cover, out loud. We discussed the things that have happened/are starting to happen, what lies ahead, and what to talk about...especially as the booklet suggests..."how to say goodbye." This led to a 30-minute talk peppered with tears here and there. I told her about my new fear, but also stressed that I didn't want it to sound like I wanted her to "hurry up". She didn't take it as such. At the same time I wanted to assure her that I will somehow come out the other end of this "ok". She always thinks of others before herself, and I know that she is at least sub-consciously doing that for my sake, and others. I wanted her to know she didn't have to hold on for my sake. In a way, although we both are "at peace" with her dying, I felt like maybe I needed to "give her permission", as stupid and self-centered as that sounds. But hey - I already know she's not hitting the pain button as much as she should because she wants to be alert... I know she will think nothing of suffering longer if she thought it would help me or someone else.
I discussed with Erin today an event that occurred just before things went bad Tuesday night. It's too strange to just be coincidental. As I may have brought up before (I'm honestly scatter-brained), Billy Jo was concerned with how I'd be financially with her gone. I looked into everything to try and get her a better picture of how I'd be ok. I told her this before but Tuesday I went into details. I laid it all out, and explained my plan to ensure everything would be ok. At the end she said "you don't know how much this makes me feel better - I was really worried."
I asked her last week if she had any "unfinished business" that she felt she needed to take care of. It's something I read in the book "Dying Well" that I mentioned before. She said there wasn't anything, but I think her continuing concern of my financial future was indeed that - unfinished business. No sooner had I explained all this did the "will this night ever end?" downturn begin. Like I said - too weird to be immediately dismissed as coincidental.
Erin was here for a little over an hour today. Billy Jo was nodded out for most of that, but Erin was able to witness the dream/real confusion a few times as well as two of the "yelps" I struggle to explain. She agrees that a turn has been made since we saw her last Friday, and we talked at great lengths about basically everything I have typed tonight, save for the result of our talk after reading the guide. She's been a great help to me. To us.
We napped off and on most of the afternoon, and if I count the times she nodded off as sleeping, she was up about four hours today. On the plus side, it's been a week since she's vomited, and as pathetically tiny as it was, the poop clock has been reset. And she ate *something*, as small as it was.
Thanks for sticking through to the end of another long post - I will end it now and begin to slowly recharge my strength tank, hoping I don't run out of gas with the lights of our destination visible on the horizon.