August 11, 2011


For thirteen weeks I have come to his side. For thirteen weeks I have politely chided nurses, made phone calls to family, followed him from hospital to institution to institution. For thirteen weeks, I have been the continuity, quietly explaining to every shift change nurse how it started and how we ended to the current state. As the time has progressed, I've taken to abbreviating at much as possible.

I am his verbal medical chart. I know what drugs he's been on, what procedures he's had, what places he's stayed, the quality of care at each. The nurses may initially say they cannot talk to me, but when I say, "That is fine, but I am the only family he has... and let me walk you down the path of the last xx weeks... so YOU know what you're dealing with" they realize I am his only advocate here and they open up to me.

They are honest. And hopeful. I am able to tell them immediately by mood if something is wrong with him. They don't know him, but I do.

For thirteen weeks, I have been the cheerleader, the advocate, the care taker of sorts. I have laughed with him, yelled at him, cheered with him, threatened to smother him with his pillow (joking in frustration), brought him a hamburger from Burger King, scolded him, fed him, and reminisced with him.

It is thirteen weeks.

I walked into ICU tonight. I brought my husband. For the first time I doubted myself to be able to judge things right. For the first time, I was unsure I could see him alone.

The whirring and clicking of the machines surrounded me. I sat down in the chair beside him, stroking his thick swollen arm, mottled from so much bruising as he's on coumadin for his heart. I played gently with the hair as he slept.

A bag of blood dripped into his arm, combined with antibiotics and fluids. A tube runs into his stomach now, suctioning out stuff that is so vile, mixed with old blood. An oxygen mask is clamped to his face and he's hooked to more monitors now that I remember him having the first time he was in ICU.

His eyes flickered open and I smiled.

"Bou", he said. "They let you in!"

"They did. This nurse was a tough one. I wasn't sure we'd get in, but we're here. How are you feeling?"

He shrugged his shoulders. "Eh. What're you going to do?" It came out muffled from the oxygen mask.

I could feel my throat constricting for the first time. Of all the things I've done in the last 13 weeks, never once have I cried. Never once.

"I'm worried, Joe. This is the first time. Now I'm worried..."

Big mittens cover his hands to keep him from pulling out the tubes. He doesn't want them there, the tubes. He is sick of all of this. He is tired. He's tired of fighting, being moved around, of all of it.

He looked down at me and the roles were reversed. He became caretaker.

The tears rolled down my face. My husband was with us, but at that moment, it was just Joe and me. My face turning into a grimace, I couldn't quit crying.

He smiled. He said, 'Bou, sweetheart, you must always remember one thing. Everything must come to an end..."

I gave him a crooked smile as I struggled to breathe through the tears. "Yeah, I'm just hoping this isn't your end, Joe. Not yet..."

He shook his head, closed his eyes and said, "Everything must come to an end, Love."

He slept off and on as I sat there stroking his arm crying. I got myself collected enough so I could call the nurse in and figure out if it was time for me to call the family or if their plans for Monday are going to work.

She assured me that everything did come to an end, but this was not Joe's end. He would be fine. She explained what we're seeing and why and she was so confident that he would be fine, that I believed her.

For that time in the room.

I called the family and told them to hang tight until Monday and I'd keep them abreast of what was going on.

I was in bed tonight, ready to go to sleep, when the tears came again.

Everything must come to an end.

And I know the nurse said he will be fine. But there is a little voice in my soul that is saying... she is wrong.

Let my voice be what is wrong...

Posted by Boudicca at August 11, 2011 10:52 PM

I hate this part, where you get to the point where you know they don't have much time left and you can't do anything about it. It sounds like he is ready to stop fighting so hard, even if you are not ready to let him. God bless you

Posted by: AC at August 12, 2011 12:00 AM

The thing is, I'm not about to ask him to keep fighting. Not at all. He is right and I accept that.

I just hate the way it is going. He has heart issues, so can't he just go to sleep and not wake up? Does have to go through all this crap until his body finally fails?

His lungs are fine, his kidneys are great. There is no organ shut down. Why can't he just go to sleep and not wake up?

Posted by: Bou at August 12, 2011 07:32 AM

you have incredible strength.

Posted by: wRitErsbLock at August 12, 2011 07:47 AM

Sending hugs and prayers your way....

Posted by: Omnibus Driver at August 12, 2011 02:19 PM

That has to be exhausting, Bou! The nurse sounds like a good person, though, so I hope that helps some!

Posted by: PeggyU at August 13, 2011 12:04 AM