There's a communal kitchen, with a communal refrigerator: "All food must be labeled with the Name, Room Number, and Date. Anything over 7 days old will be discarded. Refrigerator is cleaned out every Monday". I see the labels in a plastic pouch taped to the door with a pen shoved in with them, the plastic torn down one side from everyone extracting the sheet.
I stare at the label sheet, my pen hovers over the lines..."Today's the 4th, right?" I ask a woman that walks into the kitchen. Her shirt is wrinkled and slightly askew on her body, her hair is washed but fluffy, having not been blow-dried into a style and fixed with hair products of any kind - natural, unkempt. "I honestly don't know," she says. "I can't keep track."
"Yeah," I say, "I've only been here a couple days and I don't even know." Sunday was the first, I remember, let me count...yeah, it’s the fourth."
Hospice is Zombie Land, I realize. It’s a timeless place. No one knows what day it is, the souls hanging between life and death never know what time it is, activities are carried on with no beginning and no end as there are no goals, no deadlines...oh, well, actually deadlines...deadline, deadline. What a word. Every word seems a little heavier in a hospice.
One of the first things my mom asks when she is coming out of a morphine stupor or abruptly awakened by the night nurse's last swift turn of her body before the shift ends is "What time is it?" Well, that was one of the first things she said. She didn't ask that today.
I haven't even been here many days, but I've also stayed the nights and so that's doubled my "days". 24 hour days give you a lot more time to experience things...like pain and fear, but also joy and peace. Interactions with people in Zombie Land are much different than on the Outside. You have an immediate connection with people. We are all here to experience this pain and we cannot call it our own, but yet each of us let's another feel that they are unique in their pain somehow. I don't know how. "Hello, how are you?" "Oh, just hanging in there...you know." "Yeah, me too, I'm sorry"
Zombie Land is a place where the path to Death is demystified. Little booklets are in each room's cupboard, or laid nonchalantly on the community kitchen table - "When Death is Near". Here's what you need to know 1-3 months before death, 1-2 weeks before death, days before death..."Okay, we see some of the things from this list and from the list", my brother points out between 1-2 weeks and days before death. Crap. The page becomes a little fuzzy.
Before I read the Death Manual last night, I experienced something on the list without being pre-warned - throat gurgling. It hadn't happened the night before, this was new. It sounded unnatural, deathly, telling...this had to be it. I dragged the industrial pull-out chair-bed as close as possible to Mom's side, releasing the rail. There was a huge gap still between the beds. "Extra pillow, where are the extra pillows," I thought, as I stumbled to the cabinet. It made a bridge between the two where I could lay my belly across the gap, legs splayed behind me and hanging off the pull-out so I could get my head as close to Mom as possible. "Okay, watch the arms, they're so edematous its painful...watch not to bump her head, watch any pressure on her shoulder." I finally settled beside her upper arm and listened to her breaths that seemed to take so long to come then gurgle down and around for some time. I dozed a couple times, catching my breath and stopping my heart each time I shook awake.
This really wasn't it. I finally found the night nurse to listen and assess as it got more pronounced. I had to know. I am the responsible one for calling my father and brother in the middle of the night to say "It's time". I didn't think of this as a concern until the moment I thought I would need to make this call. Sometimes I think I can handle this; now I know most times that I cannot. Who can? And even though every single person in Zombie Land has to go through this, no amount of lists in Death Manuals or advice from Those-With-Prior-Knowledge can prepare you for that moment when your mother is truly, actually, eternally going to die..die..die.
The nurse gave me patient and sound advice on morphine. Morphine sucks, can I just say. Morphine is necessary in Zombie Land and it just sucks. Help the pain of Death, take away the choice to die. What's the balance between keeping my mother as pain free as possible but being able to wake her up enough to eat some yogurt and scrambled eggs in the morning? The pancreatic cancer metastasized to her liver will kill her, sure, but it’s the wasting away from not eating that will take her first. But what if that's not her choice - what if I can rally her, Ra! Ra! Ra!, to eat to live-small meals-several a day-protein packed-calorie rich...can't I try one last ditch effort only if she could stay awake for only 5 minutes. Asking for a miracle, albeit, but aren't you allowed to try?
I calmed down finally about her breathing - it wasn't, in fact, Death Time. I spent the next 30 minutes sobbing on the patio wooden bench in the cool, southern spring air. Balled up tight, rocking - now I know, now I know why people can't always talk about losing their mothers. It’s an abyss. Thank goodness there were French doors in the room releasing me out into the woods, a breeze chilled and calmed me. Then I realized there were probably security cameras...oh well, what haven't the staff seen. I can't even imagine the stories they could write.
Comical things happen in Zombie Land, too, though. Like people forget some of their normal inhibitions. "Hi, um...you asked me earlier about the Wi-Fi connection in the dining area - but you said my name first, I'm sorry, but do we know each other?" I was confused by this man that had lightly tapped on my mother's room door as I stepped out to address the interruption. "No, you must of misheard me," I said, "I simply said 'Hey, is the Wi-Fi working in here?' when I saw you on your computer." "Oh, well, okay - I guess...well, anyway, I'm Gary, then." "Hi, Gary, I'm Lori, so nice to meet you." "Okay, well, I'll see you around."
I stepped back in the room to see my brother grinning at me and my father intent on his computer, though also with a grin. "Huh? What? Uh-un - he was SO NOT hitting on me, shut up!" "Yeah, okay, right...you believe that," my brother laughed. In Zombie Land, seriously? In the end, Gary ended up being my midnight "date" after my sob session as I sat in the kitchen sipping lukewarm coffee and scanning the daily paper wearily. Somehow the daily news of national triumph at the downfall of an international terrorist didn't faze me at all. Death and more death.
I suppose you could get picked up in a hospice. Though it would be odd..."Soooo, which relative are YOU here to see die?" That's what you have in common to start off with. Not an ideal ice breaker. But I wasn’t convinced my brother was right, and who cared, anyway – Life intermingled with Death in Zombie Land in such a strange way. We settled into a nice conversation about his grandpa who has been in hospice for 19 days already, having sprung back from a week of not eating or drinking, miraculously re-initiated into Life by some ice cubes running across his lips and down his throat. What are the choices of the Universe, anyway? Why bother with some of these shenanigans? Perhaps question #1 for God when you see him.
Gary's grandpa sat up for 48 hours straight, talking non-stop and giving loud sermons, I was told. How crazy...how, well, interesting really. The mind has so much to do when Death is near, it’s as if it has to get a whole bunch of junk out before it can truly rest and be delivered into a pure energetic form to reunite with the Universe from whence it came.
My mother is still listening to us, wanting to tell us some things that are on her mind but cannot. She said to my brother today, "I'm frustrated." A friend got the nurse to bring more Roxanol to my mother when she seemed painful and Mom said, "Here we go". Mom's still trying to work out what's happening to her and if she has any choices, I think. I tried to give her a choice, a small sense of control. Our family never really talked about unpleasant things. I tried to respect my parents' wishes to not know a lot of stats and specifics about pancreatic cancer. But I think this led them to being stunned by the swiftness and severity of this cancer monster. The worst beast, the baddest son-of-a in town. I couldn't live with not giving Mom one last ditch choice - eat or not, it can be your choice. So I laid it out for her this time - my only time, literally at the end of my mother's life, to be irreverent to our normal family social structure.
I shook her awake after each sentence..."Mom...Mom...Mom!" I tried to keep my tone gentle. "The only thing you have control over is eating. You make that decision. I know it’s hard. It may hurt, it may be slow and hard. But I want you to make that decision. If there is going to be anything at all that you can do right now, it’s to eat. It you are done...if you do not want to, then that is your decision. I will help you either way."
Could her brain grasp that and make a decision? Or is she already too hazy with morphine? Are you allowed to even think of a miracle at this point, when food won't really cure anybody of metastatic pancreatic cancer, but could possibly keep them alive to endure more suffering? What's the right decision in Zombie Land, when no real rules apply, time stands still and everyone, everyone is waiting for the most dreaded thing in Life to happen?
So I sit here now, unable to sleep through another night. We have a roommate now - bone cancer along the spine. Certainly even worse off than Mom at this point. Her family didn't stay with her, but I now know why. On the other side of the curtain, each breath she takes is like a horrible grunt and gasp and sputter and hack like nothing I've ever heard. Each time she stops I think she must certainly have met Death, but she coughs again, a spasm to get air into lungs that may not be quite capable of doing so anymore.
And Mom to my side, actually with quite a normal snore this night, no gurgling, but a choke of phlegm maybe every so often. And some whimpers...ever so slight...perhaps whispered, almost mouthing a word or two. This may be on a Death Manual list...I forget which one...1-2 weeks or a couple of days...that there will be people long gone that she sees or talks to or tries to touch. Who's to say that they aren't really there for her? How can I know what's best for her, really? I know what's best for me, which is to have my mom forever with me, touchable, huggable, and stubbornly expectant of me to fulfill dreams she never could. Maybe, just maybe, there are angels that she'll see to guide her to some new dreams, beyond anything we in Zombie Land can comprehend. What else can you hope for in a place like this?
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