96. A Really Bad Place
(Marjorie, please don't read this to mommy)
This is going to be a very short blog. I’m not in a very good headspace, but I promised I would put it all out there so here it is. On Wednesday I will be hosting a little get-together at the request of Nurse M. The attendees are: Tim, Hannah, Jessica, Kathy and Eileen, my nurse/sisters-in-law, Heather, my hospice social worker, Nurse M, and me because I can’t get the eff away. What will we be doing during our little soirée? We’ll be making deathbed plans for Yours Truly.
Yeup, On Wednesday, July 27th I’ll be part of my
End Of Life meeting.
Not sure what any of you will be doing, but it’s safe to say it will be sooooo much better than what I’ve got planned.
I’m not really sure why I need to be at the meeting. I already know what I need to do at the end of my life — I need to die. I’m sure ‘the team’ needs to know, ‘who’s on first, what’s on second, and I don’t know who is on third’ but I’m going to be on home plate, hell, I’m going to be home plate.
During the past eight months I put in the mental work and decided I would die at home, and as I predicted months and months ago my living room will be converted to my dying room. This weekend Tim and I decided we would put my deathbed across from the bovine placenta loveseat and also what needs to be moved to accommodate that, so that’s taken care of. We also decided who would be on my personal care team. During daytime hours my family members will have to do things they shouldn’t have to do; overnight I’ll have paid professionals. For the non-professionals there will be talk at the meeting about catheters and crap — literally — and how they will handle both. There will be an explanation of the drugs in the Comfort Kit and what they do. I hope there’s one that will keep me from pissing and shitting myself. Just sayin.
There will be recommendations for Tim and the girls to take time for themselves, to remember to step away so they best manage their emotions. And there will be a tutorial for them on how to read signals of distress in an unconscious patient. That way Tim, the guy who works in the printing industry, and Hannah the registrar at a private school, and Jessica an ESL educator can figure out when to pump me up with morphine.
If you’ve identified a tone in my ‘writer’s voice’ then good for you. There is a tone because I am pissed. You probably think it’s because I’m dying. Well sure, having my life called ‘when I’m 64’ certainly does not please me. Leaving my husband before he retires does not please me. Leaving my girls while they are in their thirties does not please me. Leaving Hadley at any time does not please me — it guts me.
The reason I am pissed is because dying is way too hard.
Granted, some of the difficulties are part and parcel of my slow roll to the grave, or in my case to the crematory. Don’t get me wrong and don’t think me ungrateful because I am absolutely thrilled my death-process is taking time. It allowed me to plan things for my loved ones; little things that I pray will help them cope with my loss. On a larger scale, I wrote a blog to help me process this part of my life’s story, and to help others cope with the loss of loved ones, and to help show the ‘better’ side of being a hospice patient.
But, I ask you: what have I gotten during this shit fest?
A death sentence that clangs evermore.
Emotional and physical pain that offers no mercy.
Shortened days; the gift from drugs and disease.
A body that functions less and deteriorates more.
Clear signs the shit is gonna hit the fan, soon(ish). I realize soon(ish) is a relative term, but it’s the best I can give you.
What I still don’t have?
A fucking clue about how to say goodbye to those I love.
Will this effing End of Life meeting give me that elusive answer?
I doubt it.
When I hop onto the bed and my family and friends stop in for the ultimate ‘Hello - Goodbye’ who says what, when? This is the kind of crap that has been tearing me apart for several nights. Thankfully, my really bad breakdowns come when I am alone in the still and dark. I know I could bawl my heart out in front of loved ones and friends whom I love like family, but to what end?
Can anyone help me carry my emotional load?
No! That is why I go it alone. Look, if I emote all over everyone, they will join the pity-party, it would be impossible not to. So then what? I’ll end up getting covered by my own snot and drenched in their anticipatory grief. My cause of death would be drowning, quite the curveball, I’d say. So that’s why I leave my tears until after midnight.
The timing of my emotional breakdowns started at the same time I began having nightmares. A handful of days ago the crying crap and disturbing dreams began. It might be in response to the meeting, or maybe it’s just because I’m sad and I’m afraid.