My Mother is in Hospice (Apologies for the disjointed thoughts) in Entries of Great Significance

  • July 8, 2015, 2:15 a.m.
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  • Public

There is something so very insufferable about this journey.

I feel lost in ways I have not felt since I was a young child in a department store hearing my name broadcasting over the crackling speaker to report to the customer service desk.

As a kid, I was good at getting lost.

Being lost.

As an adult, well, sometimes we never grow out of things, do we?

Perhaps, instead, I have grown more fully into it.

I wonder.

About a lot of things.


What are you thinking about, right now?

The machine breathes for you.

Then it doesn’t.

The tubes feed you.

Now they do not.

Your eye flicker when I talk to you.

But you are already gone.

I accept this the way a leper embraces the loss of limb.

I endure this the way the slave’s back handles the lash.

I am here, mom.

I’m still here.

I was always here, even when I had to walk away those many times.

And I still don’t feel like I’ve found anything, really, of substance.

You know, I used to be terrified of the world without you in it.

Then once I had that, even if only temporary and of my own choice, I couldn’t imagine my world with you back in it.


I’m facing both at the same time.

I have for months.

I endure as the Sun handles the cloud-soaked sky, and the newborn bird struggles with flight. I endure this for you.

With you.

Without you.

Thomas didn’t say goodbye to you tonight as we left the hospice.

I softly kissed your pallid forehead and told you how much I loved – love you.

I struggle with tenses now.

You haven’t been awake in 12 days.

Seizures were the only brain activity recorded.

The numerous EEG scans show less movement than a statuesque Gargoyle enjoys overhanging an Eastern keep.

“You don’t want to say goodbye to her before we go?”

He stood there, rigid, and didn’t say much.

“I already said my goodbyes to her when she could still hear them.”

So we walked out of the picturesque hospice center fittingly called Passages with the word Sanctuary embossed across it’s serene and almost Temple-styled design.

It sits along River Road directly across from the levee that holds the mighty Mississippi River at bay.

Uptown New Orleans was where she was born, where she grew up, where she returned, and where she lived out her entire life almost.

This place suits her nicely to venture her on her way to the next place.

If she isn’t already there, awaiting acceptance at some mythical door.

I wonder where you will gain your entry to, mom, but I know this – you deserve one without hardship, without pain, and without sacrifice.

And hopefully one with a lot of kisses.

The last time she spoke to me, she told me she was already dead, and how was I in heaven with her?

And she asked for kisses.

Like a child, I kissed her gently, and she greedily said, “Again.”

She did this 8 consecutive times.

I obliged each one.

And this happened about 4 separate times.

There was a time we walked out of the ER, Thomas and I consoling one another, tears in our eyes.

“She’s fighting so hard,” I said in my grief, “but I’m not sure she’s going to win this one. She’s always won before.”

Thomas, stoic so often, had his voice crack as he replied, “Maybe she would if she had her whole family here fighting with her.”

The family that wasn’t present has been obvious.

But he was there last Tuesday when we met with the Palliative Care team to discuss my mother’s unresponsiveness and her future.

My older brother as I introduced him, and it felt alien to me to say those words, Mark and his wife showed up.

They haven’t endured the past six months of nightly going to see her, hearing her in pain, afraid, scared of life, wanting to die, begging us to let her die, to take off all the machines, end dialysis.. that I always handled fine.

How the fuck does someone handle that fine?

But I did. That I guess speaks to the wonderful storybook life I’ve had, huh?

The thing I couldn’t take, was when we would walk in, and she’d eagerly ask Thomas and I if we could leave. Take money out, take a taxi, anything..

She just wanted to come home with us.

See Sam and Dean and hear them bark and wag their tails and have Sam with his emo eyes and Eeyore stare look at her sadly, while Dean boisterously bounces around and barks sharply piercing the air letting us know he’s the best scout there is to Sam’s monstrous alpha.

Well, he’s the beta.

I’m the alpha.


She wanted so badly to be with us.

Come home with us.

And if the doctor’s hadn’t told me I was not allowed to take her home that medically she required care no one man or even two could provide to her it wouldn’t haunt me so.

Stagger my heart.

Stab my soul.

Pierce me clean through as would a knife through the air.

What a beautiful blade, it cut me deeply, when she would plead with us to take her home or let her die.

I think, at Passages, now that she’s in hospice and has only days to live since she’s off the ventilator, off feeding tubes, and won’t receive dialysis (her last treatment was the 4th of July, naturally) I think I’m finally doing those things.

I’m doing both, mom.

I took you home to Uptown New Orleans a stone’s throw from the rumbling clanging of the St. Charles Streetcar line and I’m letting you die.

And I’m sorry I wasn’t a better son, that I didn’t give you the grandkids you always thought I would and wanted me to, and that things between us were often so toxic.

But I’m just like you.

Mark and Thomas, they’re not really.

I have spent the entirety of my life trying to be the best of my mom and be nothing like the worst of her.

And I don’t know where I am in that, but I know I’m finding myself less lost and more at peace.

The other day I talked to you for an hour and a half by myself, holding your lifeless hand, trying to wake you up, and I didn’t even realize I was crying the whole time until Misty came in asking if I was okay.

Of course I was, drying my eyes on my sleeve.

She brought me a hand towel, because for some reason the CCU doesn’t have tissue there.

I thanked her.

Last Tuesday Mark and his wife met with the team and we decided Monday July 6th we would decide at 11:30 a.m. what to do about my mom.

That basically meant, if she hasn’t changed, we need to pull the plug.

I went to Memphis with Sam and Steve and had an amazing weekend.

There was love all around me.

I returned knowing what I was staring down – the barrel of a gun that was pointed at my mother and instead of bullets it was a nurse unhooking tubing and pulling lines.

Thomas got off work just to go there.

And Mark wasn’t ready to do it.

What the fuck, man, what?

“I’m ready. I mean, look, we knew last week that today was it. She always told me she didn’t want a machine to live for her, and that’s all this is. Let’s do this thing. For her.”

I coolly said, almost too much so, it bothers me I was so collected saying it.

Fiona was there.

Misty was there.

Natasha, this amazing nurse was there.

The doctor, the social worker, and two other team members were there..

Thomas said he was ready.

“We can do it in 10 minutes if you like. It’s a very quick process.”

Mark didn’t bring his son, Matthew.

How did you not come here prepared?

Oh, right, because for six months you ignored my mom.

Never saw her.

Didn’t call.

Didn’t answer her calls.

Didn’t respond to my texts.

My pleas. I fucking begged you a few times to come see her.

And now YOU are not ready?

Of course not.

It’s always about you.

And somehow he had a doctor’s appointment back home in Slidell (45 minute suburb from NOLA) at 2pm?

WTF? You forgot you had it?

Not like this meeting wasn’t important. And when you did remember you had it, did you not call the Palliative team? We all have their cards and numbers..

Mark wanted to do it the next morning (Tuesday - today), but I kept saying Thomas had work..

So he puts it off until 5 or 6pm.. okay, we’ll all meet back here.

Natasha, as she is leaving walks past my entire family, stops, puts her hand on my arm and rubs it and looks me in the eyes, and says, “I am caring for her today. You know I will do everything possible to make this as painless and as easy on her and on you as I can. I mean that.”

I smiled brightly at her kindness, and stumbled over saying of course she would.

She’s a tremendous nurse, and I’ve had every kind imaginable. I told her so.

Such vibrant red hair and the softest grey eyes you could ever imagine, but this perkiness to her smile. Her lips are curved almost always in this friendly way.

The kind of look an old friend gives you when they see you in a while’s time passing.

Mark doesn’t respond to me at 5pm.

Not at 6pm.

He says he was sorry things got hectic with Matthew, but they’d be leaving soon.

I glared at the clock.

Shift change is at 7pm.. so now we’re going to have the night crew.. ugh.

They said they can do it at anytime, but if you’ve been in a hospital for any length of time, even in ICU, things are different at night. It’s just how it is.

Thomas and I arrive at 8pm after I made a horribly painful call to my friend Annie letting her know about my mom.

That.. hurts too much to detail.


We wait.

And wait.

Mark and his family arrive at 8:30pm, and sit away from us in the lobby. Why? I don’t know. Weird people.

We go upstairs.

The nurse on duty, I didn’t know him, but he said he could have the respiratory tech come pull the ventilator right away.

Unless we want the doctor there.

I’m about to say, “We don’t need a doctor for this..”

When Mark says, “Yeah, we definitely want the doctor here for this.”


Really, dude?

I’ve had a ventilator in like 4 times in my life.

DOCTORS DON’T PULL THAT LINE. RESPIRATORY TECHS (who almost always are very personable and funny people in my experience, weird, but true my FaceBook is littered with several of them! They rock. Anyway.) DO THIS FOR A LIVING. IT’S KINDA THEIR SPECIALTY.

“It’ll be a 20 minute wait for the doctor, if that’s okay..?”

“We don’t..”

“We’ll wait.”


8:30 becomes 9pm.

9pm becomes 9:30pm.

I’ve said my goodbyes, I’ve cried holding her hand for 20 minutes as Thomas rubbed my back quietly, and Mark kept filling the dead air with rambling.

Sometimes you just need to cry quietly holding your mom’s hand.

Stop fucking talking.

Then it’s 10pm.

I’m about to leave, I tell Mark, unless we get this pulled.

We should have done it at noon! We came here that morning to pull the lines!

I prepared myself a week to do it!

What planet was he on when we had that meeting on Tuesday? How do you come unprepared when the entire point of the meeting is to do this!?

The doctor comes and says he’s crazy busy with patients in bad shape, but that he’d happily pull the lines when he could.

“Doc, I know you’re busy, I was in this very ICU a year and a half ago. I understand, but can you give us a ballpark when you might be free?”

“In the morning, for sure.”

Thomas slumped, turned away and walked back inside to talk to my mom to stifle his rage.

My heart sank.

Why was I even fucking here?

That thought kept echoing in my head.

“No sooner? You guys said anytime.” That was Mark’s reply.

How about we just have them pull it without the doctor, genius?

“Maybe a few hours?”

We thanked him, he left hurriedly.

I’d never spoken to this doctor nor this nurse in the 3 weeks my mom’s been in this ICU.

Night shift for the win.. but I know hospitals.

Mark doesn’t.

And who made the decisions?

Oldest brother doesn’t mean shit.

I’ve been the spine of this family from the very outset.

My mom would tell me everything. She used to call me her 40 year old (I’m still not 40! Ha! Take that, mom! … she’d find that funny, by the way, we’re twisted. Where do you think I sharpened my wit and got my sense of humor from people?! Mom!) when I was like 8 years old. She said I could handle anything.

Nothing would phase me.

She talked to me late at night, scared, anxious, and fearful of the bills. What we couldn’t afford. How she was three months behind on the light bill. Things like that. She confided in me secrets, fears, concerns, and always wanted me to take care of the family. Make sure we stuck together.

“You know I love you all equally, I don’t have favorites. My mom played favorites with me 3 sisters and I and we hated it. I hated it. I don’t have favorites.”

I nodded. “I know you don’t, mom.”

“But I also know my sons, and you’re all very different. Mark’s a hard worker, but he just doesn’t have the talents you do. You’re so smart. So sharp. You understand things that even I don’t. You write and see people better than anyone I’ve ever known. You’re just special like that. So I need you to do things that they can’t handle. I need you to handle it. My little 40 year old.”

“I’ll do anything for our family, you know that.”

We would hug.

This was not a singular conversation.

This was my childhood. My adolescence. My adulthood.

My always.

This was just how things were.

And I had no greater fan and no sharper critic than mom.

I don’t understand it, why Mark can’t see beyond himself.

Thomas is challenged, he’s got a learning disability, probably a mild form of autism. He’s not normal, but he’s smart, he’s capable, but he’s anxious and nervous and doesn’t filter the world the way we normally do. He’s in tune to everything around him amplified up and so he is distracted easily and loses time easily.

In many ways, I’ve felt like his dad more than his brother.

He’s been my nurse as often as he’s been my brother.

We’re just family.

I’m there for him in the ways he needs.

He’s there for me in the ways I need.

That’s family, right?


I talk to Thomas, and he’s angry and just wants to go.

He was spent – 3 straight 6am shifts and 10+ hourrs each time just to get Monday off so we could be run around by Mark’s inability to accept this. No. His unwillingness to face it when it happened so now it’s all new to him.

“We’re going to go.”

Mark looked up confused, “I thought you wanted to be here to pull the tubes? She might code right away?”

I stared at the wall.

Thomas walked out.

“Yeah, man, I know she might.”

“So why are you leaving? I’m confused.”

Trying to control myself, I look down at my mom, and I know she always wanted the 3 of us to get along..

Got to make her happy.

She earned it.

And I’m trying to be a better person.

Better man.

“It’s been six months of this. We’re tired. We thought this was happening at 6 at the latest (I didn’t even bring up 11:30am, I would have lost it talking about that), which means at after 10pm, which it is now, we’d have been with her over 4 hours with the tubes pulled.. we’d know.

Right now though, man? We don’t know when they’ll do it. If they do it at 1am, I won’t want to leave. Then I’m here until 3am? And then what? He has to work. I’m completely drained. We’re going to go. I’ll be back tomorrow morning.”

He shook his head and looked down, “I just thought you wanted to be here for it.”

Ah, my mom’s learned guilt trip.

Did not work.

Not sure he even is aware enough to know he was pulling from her playbook.

That moment will bother me forever.

“I came to terms with this a while ago. When she goes it will never be a good time for it to happen. I wanted to be here for it, but clearly that isn’t going to work out for me, and I’m just going to have to live with it.”

He shrugged.

I walked away.

We got to the elevators, and a woman walked up as Thomas and I were angrily discussing him.

I wonder what she took away from it.

“I don’t get it. How the fuck does Mark show up today not knowing we’re letting mother go? That we’re pulling the plug? How do you sit in that meeting a week ago and show up not ready? Wanting to put it off?”

I was spitting fire from my tongue.

Thomas looked at me, and said reasonably, “Because he never thinks about anyone but himself. It wasn’t a good time for him, so he made it when it was good for him as he always does. He doesn’t care about mother or us. He’s shown that for years and years.”

I nodded, angrily, “I don’t get it. How the fuck are we related to him? How is he our blood? Steve’s my older brother more than he ever was or will be.”

Thomas rubbed my shoulder.

“Blood isn’t always family, and family is sometimes friends.” I concluded.

We got off the elevator and walked to our car, the lady exiting on a different floor.

On the ride home, 18 minutes after we left, Mark texts Thomas.

“They just pulled the tubes out. Just fyi.”

That was the message.

Thomas read it appalled.

“That’s just how life is for us. Just how life is..” I said.

I was with her as we transported her today to Hospice.

Passages is beautiful.

Thomas said she would have loved it. Why couldn’t she be here when she was awake..

“She’s here, man. She’s here. Inside of us. With us. We’ll always have her in our hearts, our thoughts, but she’s still here. She’s just enjoying the river, the view, the streetcar’s clanging. That’s why she’s not gone. She’s reveling in New Orleans.”

And that’s how my day ended.


May you always find your smile.


Jafael July 08, 2015

My deepest sympathies at this time. I know there are no words enough, but my heart aches for you and your family.

LoveSuicide Jafael ⋅ July 15, 2015


I need tea. July 08, 2015


LoveSuicide I need tea. ⋅ July 15, 2015

Always! Thanks!

Seasons July 08, 2015

LoveSuicide Seasons ⋅ July 15, 2015


Lobbastah July 08, 2015

LoveSuicide Lobbastah ⋅ July 15, 2015


I plan to catch up on entries soon after I respond to long overdue notes!

Empire of Lights July 10, 2015

:( So sorry
Hugs <3

LoveSuicide Empire of Lights ⋅ July 15, 2015

Hearts&Hugs right back to you. I appreciate your generosity with caring. It matters!

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