Four or five times a day a I get a text message requesting an update on Rich. I’m always warmed by how much he is loved.
I always text back “no change” and then try to shine it up with something reassuring.
It’s a lie that does not even resemble the truth. It’s not even a sugar-coated truth.
He’s been completely unresponsive since Sunday night. Since then there has been plenty of change.
As of forty minutes ago…
His eyes are two little pebbles sunk back in gouging sockets. His right lid only closes halfway, allowing you to see that his once shining eyes are now milky and lifeless. His hands are hot, his face and neck “normal”, and his feet are ice cold. He’s getting tylenol suppositories because his body has now learned how to run a fever, and they have to bathe and change everything 2-3 times/day because periodically he oozes fluid through his skin.
His feet are beginning to turn purple. His left hand and forearm are swelling. His scrotum is less swollen--now only half the size of a soccer ball, but the excoriation has begun despite the many measures taken. As I watch him breathe I see that only his left lung expands now. With my ear against the right side of his chest I cannot feel movement with breath, nor hear any air flow. The only sound he makes is guttural moans as we near his next dose of medications. Maximum air flow is 8-10 breaths/minute, slowing to 4/min shortly after meds.
He does not respond to my voice or touch. He does not squeeze my hand. Not the slightest twitch.
I come straight from work and sit with him, holding his hand, stroking his brow, giving kisses and whatever words of love flow out of my mouth. I do this as long as I can bear it--a range between 75 and 113 minutes.
I know it’s time to leave when I begin to feel the sight of him is burning a permanent shadow on my brain like the TV station sign off signals back in the sixties. (Most of you are too young to remember that). There’s a reason computers have screen savers.
Staff is always aware of my presence and always magically appear about fifteen minutes after I settle beside him. They assure all my questions, which is adequate since I know they don’t have answers. This is how he is. They even vocalize that no one understands how he’s still alive a week after he stopped receiving the 70% dextrose that barely prevented hypoglycemia; how he’s survived the absence of antibiotics that were barely daunting the lung infection; how his heart refuses to lapse into tachycardia, A-fib, V-fib or any other Fib given that he no longer receives his very necessary cardiac meds, combined with the strain it’s under. How is he continuing to produce lovely yellow, clear urine when he began refusing sips of water days ago (not even mouth swabs) no one knows. His infected lung has been without vacuuming for a week, yet somehow it continues to barely drain.
When I can no longer bare this I know it’s time to go. I’ve never enjoyed horror movies, and I flat refused to see “The Last Temptation of Christ” because I’m just not into watching someone I love suffer. Even though they assure me and I believe in my soul he is not suffering. It’’s time to go, and I suddenly long for vindication, at the very least permission, to leave. The best I get is, “you have to do what’s right for you. You don’t need to see this.”
I leave feeling drained and guilty. Really guilty. Not because I’ve left him. He is SO not alone. Between this saintly staff and the wonderful energy that flows around him, I know he is not alone. At times I feel like an intruding voyeur. I feel guilty that I am not sharing his work, cannot bare to watch him at his work.
I drove home to the much needed and welcome Voices in the Van.
They’re permission and words of consolation get on my nerves in one 4/minute breath, and they quickly change tack. I do not chauffeur stupid voices.
“Yo, bitch….just one week in pre-paradise and you forget the past three years?! Give it up! That’s what I’m talkin” about.”
“You only did ten years Catholic, so no matter how many times you slept on a straight backed chair with your bag as a pillow in ICU waiting rooms; on cranky recliners beside his bed; on a slab of concrete masquerading as a bed; or didn’t sleep at all (too many times than WE care to count)….you ain’t getting your sorry-ass to sainthood. So what’s your deal here?”
They went on and on, each in their way. Replaying the last three years, highlighting the moments when Rich slept and I fought, cleaned, prayed, knitted, cooked, served, and comforted.
Just sounded like massive rationalizations to me.
“Even if it were possible for you to climb into that bed, which the swelling precludes, with your crazy -mis-matched socks, he’s not going to feel a thing and you’re going to be pressed up against the side rail and we all know how many times THAT left a mark.”
“More than three times medical professionals have told you it was time to say good-bye, please sign these papers. Three times you have found him in a hypoglycemic coma, and more than four times you have barely interceded before same. No less than seven times you snatched him from harm by jumping ugly on doctors, residents, medications, lab results and even Rich himself. You’re on a first-name basis with local EMS, WAY too many nurses and assistants, AND certain doctors ooze the correct level of respectful fear in your presence.”
“Seriously, Miss Crazy Person, hospice staff does not keep a score card on you for Rich to deliver at the pearly gates.”
“And those who are watching and judging just need to get a hobby.”
It seemed a longer drive home than usual. No more comforting than any previous commute.
I still felt guilty, but determined to work on it. It’s just stupid to come through the last three years as I did and start feeling guilty now. Rich wouldn’t want that. I think that if he knew at any point in the past where he’d be now, he would not even want me to see him.
“Cut yourself some slack, Baby Girl.”
Hey. Just trying to keep it real.
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