Showing posts with label caregiving. Show all posts
Showing posts with label caregiving. Show all posts

Friday, March 27, 2009

March 26, 2009

Yesterday, I was afraid of Art.

He had a PetScan.

We arrive

and wait

for wheel chair transport, compliments of the Cancer Center, to take us to the imaging Mark Taper Imaging Center.

At Taper Imaging,

we wait…

and fill in paperwork.

We move to the you-are-responsible-to-pay-for-uncovered-costs-associated-with-this-procedure-sign-here window.

We move to the waiting room with the TV that no one is watching

And wait.

We are led to a small, muted yellow toned room where they remove, from a lead lined cylinder, radioactive material. The nurse injects it into his just-put-in-for this-procedure IV line.

We are led to a purple waiting room with semi-comfortable chairs where…

he moves from the wheel chair to the semi comfortable chair.

I wait for him and

we wait

for an hour.

They come for him.

The nurse we know. She is sad to see him again, looking unhealthy.

We wait

for Art to get back into the wheel chair. He and the nurse leave.

Art waits in a tube that takes pictures of him, six inches at a time.

I wait in the purple room.

He and the nurse return.

Three hours have passed since we have arrived.

We wait for the elevator to go to the cafeteria.

He waits…

at a table while I get lunch.

We go to the cancer center to have his picc line cleaned.

He waits.

I wait

and worry. He is looking uncomfortable and is telling me he doesn’t want to wait anymore.

I insist we wait.

He insists we go home.

I debate. Infected Picc line? Clogged Picc line means new picc line on Tuesday or worse another hospital stay.

He starts to get mad.

I hold my ground.

I offer my lap, where he can lay his head and sleep.

He sleeps.

I wait.

Nurse comes.

She waits while I rouse him.

He sits up, he gets his bearings

The nurse leaves. I wait 20 minutes before he can move to the wheelchair.


I wheel him into the Picc line cleaning room.

We wait for the nurse.

He gets weighed. 160lbs!!!!!

We wait for the nurse.

He gets mad.

“I’m not waiting.” he says.

“We need to leave!” he says.

I ignore him.


I try to find the nurse.

“We need to do labs on him.” She says.

“I am waiting for doctor’s orders.” She says

He raises his voice to me.

“I’m not staying. We need to leave…now.”

I think “Who the hell do you think you are?”

He raises his voice to the nurse, “I am not waiting for labs.” He blusters.

I leave the room.

And I see that I am afraid.

Afraid of his anger, afraid of what it says about me. I take on its message, believing that it speaks the truth.

"Unworthy."

it says.

"Not good enough!"

it screams.

Later,

I am either brave enough to look at it

Or too exhausted to care.

Either way, I know, the anger was lying.

I am good enough.

I am worthy too.

The cancer has made that clear.

And so has he.

Monday, March 02, 2009

March 2, 2009

“Where should I go?” Art asks.

He’s standing in the living room, on his crutches. Chemo fog having lifted a bit this morning.

I look at him and start to cry. This morning, I can’t figure that out for myself and now I need to do it for you?

I slam my office door.

I slam my head against the wall.

Great….I just hurt a sick man. Wow….now I feel f-a-n-t-a-s-t-i-c!

The guilt rises and as I open the door and see his face, the anger takes over.

I have to choose between his needs and mine.

Feels like I’ve been doing that for a really long time. His needs always come first. The duty-fucking-ful wife.

And now, when I’d like to be able to choose, with love, to care for him, I find myself resentful and full of anger...again!

I reach in, groping for the peace, the calm, the will to get through one more day. To get through this moment.

And all I feel is dry, grainy sand. My well is empty.

“You can’t give from the well if the well is empty.” I made up that saying to help new mothers. Damn, now I have to pay attention.

My well is empty, bone dry. Been living on sludge and grim, scraping the residue from the walls, fooling myself into believing that it will be enough and I’ll find the water source tomorrow. Scarlet O’Hara and I. Tomorrow.

Now, I have no idea on how to get the waters to flow again. I don’t have the energy to figure it out. No idea what I need. No idea what will help. No idea. And I’m drowning

But this time I know I won’t drown. My ancestors, chained to the innards of a boat, lying in their own filth, not enough slack or room to sit up, only to come to a place that was more harsh. They survived. They watched their spouses come near to death too. Others turned to them and said “Where should I go?”

The answer that echoes inside of me? The answer I imagine some of them had the courage to give?

“I don’t know. Just hold my hand. We'll find a place.”
After I write this, I go to him, and extend my hand. Thankfully, he takes it and together we end up in a place.
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I could use some comments tonight (0r tomorrow). Fill my well.

Sunday, March 01, 2009

March 1, 2009

"What's it like to be on chemo?" I ask. Yesterday was his last day of a three day chemo regiment. He is IN the fatigue. He asks me to come and sit with him. "What can I do for you?" "Just stay here and keep the confusion away." he responded.

What's it like to be on chemo? I asked him.

A: I imagine a lot of weird little things, like I'll be asleep and think I have to sleep in this particular fold in the sheet or in a very particular spot on the bed.

There are these little things zipping and racing around in the dark. They're not bad, they're good. They just zip around.

K: Right. One of the side effects of one of drugs is hallucinations. Do you see them now? In the light?

A: Well yeah. If I look down or out the corners of my eyes I can see them. Oh man, my head. It doesn't ring, it's just fuzzy. It's like it's covered in lots and lots of blankets that I can see through. It's like being in a fish bowl.

K: What else makes this so hard for you?

A: The sleeping interrupts. I'll be having a thought and like then I'm asleep. I can't focus for very long. Well, you know, I can't read or watch a movie.

K: How does your body feel?

A: Oh God, my body. (He groans with a smile.) Heavy. It feels heavy, draggy, doesn't want to move. It's like it doesn't know what to do. It's like everything is passing me by. I can't do anything about it. Not in a bad way but it's just flying past.

Getting dressed...I have to think about for a while before I can do it. Oh man. I have to think about the act of sitting up. Like right now I can't think about it cause I'd just fall asleep. I can't, like, I can't focus.

K: Do you like it when the kids come in here?

A: I love it when anyone comes in becuase its a distraction.

K: A distraction from what?

A: Just this fog. This fog that I'm in. Oh man.

K: What?

A: All I want to do is to lounge here with you and talk and it feels like I can't do that.

There is a pause. I don't respond. His last words are said with his eyes closed. 10 seconds later, he is alseep again.

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Helping Hands Tip

Do their laundry on a specific day, once a week. Fold and put it away too!

Thursday, February 26, 2009

February 26, 2009

A room at the cancer center.
Art sleeps, Mystery Man pretends to look busy.

A refreshing day! A real, like day...as in normalish!
Forgot I wasn't having breakfast with a friend.

Got lost driving to Chinatown for some Dim Sum.

Mystery Man from Maine (an old co-worker of Art's) made us laugh often and very, very hard.

I considered why the hell I write this blog. It's purpose. What to do next.

Shared my views on religion

Conversed on subjects like female friendships vs. male friendships, ethnic cultural differences.

Watched Zohan with Art and cracked up at the stupid humor.

Held my ground regarding dinner "What is on the table is what is for dinner." PERIOD

Showed my daughter how to release her rage. She crushed, kicked, pummeled an emply plastic jug. Cathartic for her, for me and not so great for the plastic jug.

Helped my oldest with his paper.

An average every normal day. I only thought of Art's cancer (and everything it encompasses in our lives) like 10 million times, instead of 100 billion.
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Helping Hands Tip
Buy a gift certificate to the movies.
And remember, just becuase you haven't "done" anything yet, doesn't mean you can't. It is never too late if you love them and want to help. NEVER
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Does what I say help you? Or feel like sending some hate mail? Leave a comment by clicking on the envelope at the end of this post.