daily update 10.18.2010

Today was a hard day for me, emotionally.

It started off well, with a parent-teacher conference at Carys’ school.
That went smashingly well – she is doing fabulous! I couldn’t be more proud of her.
She does need to work on her handwriting, which I fully expected.
She rushes to get to the next thing and doesn’t really care if there are spaces between words or capital/lowercase letters sprinkled in a word. So, we’ll work on that. But if that’s the only thing we really need to work on, I’m thrilled!
All geniuses have atrocious penmanship….

I left her in her classroom and made my way to Raleigh.
Chad was sleeping when I arrived.
I ate breakfast, caught up on email and watched the news.
He woke up briefly and I told him good morning.
He shook his head when I asked if he was in pain.
No pain = good.
His Fentanyl patch is at 125 mcg now, and it seems to be doing a decent job of keeping his pain managed.
There are still break-through episodes, but not nearly as many as there have been.

He wasn’t awake very long, maybe 45 minutes. I was chattering away about how beautiful it was outside and I opened the blinds.
And he just looked at me – like I was a stranger.
I walked back over to his bed and placed a hand on his chest, as I normally do.
And he looked very confused.
Like he didn’t know who I was.
I asked him if he was okay.
He shook his head ‘no’.
I asked him if I could help him be more comfortable, or if he needed anything.
He shook his head ‘no’.
I filled his green sippy cup with water and raised the head of the bed so he could swallow.
He took a few sips, and then looked at me with the strangest look on his face.

“Chad…are you okay? Are you hurting?”
He shook his head ‘no’.
Again – the confused look.
It suddenly hit me that he wasn’t sure who I was.

“Chad…do you know who I am?”
Shook his head ‘no’.
“Do you know my name?”
Shook his head ‘no’.
Tears were welling up in my eyes and I fought through them.

I told him my name:  “Skye, I’m Skye. Your wife.”
There was nothing. No recognition. Nothing at all.

“Do you know who I am?”
He shrugged his shoulders. Then shook his head ‘no’.
I was devastated, to say the least.

I was trying to get him to say my name, which he wasn’t eager to do.
His mouth is chronically dry and he finds it hard to speak, especially right after waking.
But I tried anyway.
I failed. Multiple times.
So, I tried a different approach.

“Chad…can you say your name?”
No response. Just a stare.
I laughed & told him he liked to play jokes,  that he was so funny.
He usually will crack a smile if I say something like that.
But not today.

“Do you know your name? Who are you?”
He looked even more confused.

“What is your name? Can you say your name?”
He shook his head ‘no’.

“Do you know your name?”
He shook his head ‘no’.

I offered a list of names – Steve, Brian, Trevor, Mike, David – to see his response.
The I said “Chad – your name is Chad.”
And he shrugged his shoulder and curled his lip, as if to say he wasn’t sure if that was his name.

I held his hand and told him, simply:
“Your name is Chad.
My name is Skye.
I am your wife.
And you are my husband.”

There was no response, at all.
He still looked at me like a stranger – like he had no clue why this strange woman was in his room, asking him questions about names.

He finally had enough of my questions and went back to sleep.

And I left.
I had to get some air.
My chest was so heavy and tight that I couldn’t take a deep breath.
I drove around Cary aimlessly.

I suppose I knew it was possible that he would forget me. I’m sure I knew it. I just didn’t think it would actually happen.
He did, after all, forget me after his tumor resection in March 2009. It took a few days, but it fully came back to him.

I returned to the Hospice House after an hour; he was still sleeping.
I sat down on the couch, stayed quiet.
And he woke up.

I immediately noticed he was grimacing and reaching for his head.
When I asked if he was hurting, I placed my hand on his chest and he grabbed my hand.
He held it tight and then clearly said yes.
I was walking away to tell the nurse he needed pain medication – but his grip tightened.
He looked confused again – but in a different way.
This time it was more like ‘please don’t leave‘ rather than ‘who the heck are you?
I explained that I was getting the nurse so he could get his medicine – he nodded ‘yes’ – but wouldn’t let go.
After telling him I would be right back a few times, and his grip not loosening, I finally just yelled to the nurse sitting in the hallway.
Problem solved.

I didn’t ask if he remembered me just yet – I wanted to make sure he woke up fully.
And I had all the evidence I needed with the hand grip.

The nurse came in with the meds, and I stepped out the way so she could have full access to him.
He followed me with his eyes – but didn’t say a word.
The nurse asked him a few questions – if he was having pain, if he was thirsty or hungry – he answered weakly.
But he did answer…so I took the moment of his chattiness to ask again.

“Do you know my name, Chad?”
He still shook his head ‘no’.

“Do you know who I am?”
He nodded ‘yes’.

“Do you remember your name?
He shook his head ‘no’.

So I reminded him.
And left it at that.

I called to check on him around 8pm.
He was doing well – the nurse even noted he was doing tremendously better than he had been earlier in the day.
Which is great.
I’m glad he is having a good night.

I just feel like I always miss his “good” time – he’s always so lethargic and minimally responsive when I am with him.
Other people visit him and he’s quite chatty.
I don’t get that part of him anymore.

And I don’t know if it’s because I just happen to catch him at the weakest part of his day every.single.day, if he’s pushing me away a bit as part of the process, if I stress him out because I’m there…I just don’t know what to think most of the time.
I try so hard to be quiet, give him his space and let him be himself without any kind of expectations. I just want him to know I am there – if he needs me, I am there.
It’s so very hard.
And sad.
And confusing.

I looked at him today as he was sleeping and it just hit me how much weight he’s lost.
His thighs still had some heft to them up until two weeks ago.
Now, they aren’t much thicker than his calves.
His shoulders looks like tennis balls pushing his shirt up – there is so little muscle there anymore.
So, so thin.
He hasn’t eaten anything, more than a bite every few days or so, since the big surge he had on Saturday, October 2.
And before that, it was 15 days since he had eaten.
His body is using all of its reserves to keep him going – his fat, his muscle.
And it’s so strange to look at him and know that he took such good care of himself; running, eating well and pushing me to do that same (didn’t work…).
And it’s come to this.
Something beyond his control.
And I so desperately hate it for him.
I hate it for me.
I hate it for our beautiful girls.

This entry was posted in Chad, Chatter, the girls. Bookmark the permalink.

4 Responses to daily update 10.18.2010

  1. Nicole says:

    I found your blog through Amber Farrell's and I've been reading it for the last couple months. I am so incredibly sorry for what you are going through. I just can't imagine how you are all feeling but I just wanted to write and let you know that although I don't know you I think of your family often and pray for God's peace and comfort to continually surround you all!

  2. Shauna says:

    And I hate it for ya'll too…..you're always on my mind and in my prayers, Skye. Call or text if you need anything!

  3. Marsha Lamb says:

    I agree with Nicole. I found your blog through Meg Wilsons page and have been reading it and checking it everyday. Your family is just so incredibly awesome and I am so sorry that you all have to be going through this! You are such an inspiration! And I too even though I don't know you personally think and pray for you often to find peace and comfort through this! I know its hard to figure out now but God has his reasons for everything!

  4. Rebecca Kepley says:

    Skye, Sherry Morgan told me about your blog. I had no idea what was going on with Chad when I saw you the other week. I'm praying for all of you!!!!

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