Three bed sores forming; both heels and his left ear. I’m not exactly sure what we can do — as the staff constantly changes his position, but he always seems to return to his back. He cannot stand pillows being stuffed under his hips, legs, side – where ever – to decrease pressure points. He will leave them alone for about 15 minutes, but then he’s pulling at the pillows and wanting to move them around again.
He hasn’t been out of bed since Tuesday, I think. He was in his recliner briefly that day, but hasn’t shown any interest in getting out of bed since then. He does move around in bed a little; but not nearly as much as he used to. Now his movements resemble restlessness than anything else. Moving his legs, trying to get comfortable. But not trying to get out of bed.
Today marks the ninth day without a meal.
He has taken a few bites here and there, but it’s usually just one bite – all day, every day.
He was eating at least 1 pudding or applesauce cup per day with his medication, but that stopped as of this past Wednesday.
His stomach just growls – all day. But his brain is not receiving the signal that he is hungry.
That is hard to see and hear. So very, very hard.
The mother in me wants to shove a spoon in his mouth every chance I get. I want to feed him, nourish him.
But the wife in me knows that is not what he wanted. No feeding tubes. No IVs. He didn’t want it.
I still ask him, several times a day, if he’s hungry.
His reply is either a blank stare, very meek head shake or a feeble ‘no‘.
Saturday evening, I ventured to Borders for a few books.
All for the girls.
I never knew there were so many children’s books focused around grief and loss of a parent.
I picked up a few of them and then had dinner with some friends.
It was nice to get out of the Hospice House and have a conversation that didn’t revolve around medication schedules. We ate, talked and laughed — then headed back to see Chad.
He waswake when we arrived. And he seemed genuinely happy to see his friends (some of the best friends, ever, if I might add!).
He didn’t talk much, but he did give them a million-dollar smile and a few giggles before they left.
It did my heart good to see and hear those moments.
He slept peacefully Saturday night.
He did wake up around 3am, trying to tell me something. I just couldn’t piece it together.
His words are often slurred. And thoughts are incomplete.
It’s very hard to communicate with him sometimes.
Other times, his words are quite clear.
I hung out with Chad this morning, but left around 11:45am.
He was sleeping soundly and I knew his parents would be visiting, so I didn’t feel quite so guilty about leaving him alone today.
I miss my girls.
And they miss me.
They miss Chad.
And today was the day I finally got to hang out with them – they have been so busy the last few weeks.
They were so excited to have mommy home.
We hung out for a little while, then we all piled into my bed and took a nap.
It was the best sleep I’ve had in a while. Something about the gentle breathing of my little girls, their hands tangled in my hair and hands, the smell of my house. It was definitely needed. And it was perfect.
I took a shower and we waited around the house – it was raining, finally. I know we need the rain, but it seriously hampered our plans to get out and do something fun.
Finally, we couldn’t take it anymore and we headed to Dairy Queen – mini Blizzards for all!
It was a little different from our original plan of snocones – but that’s okay. The girls (and I) were just as happy.
We laughed. Talked about some things coming up. And just had a great day.
I took them back home, gave them a bath and helped them dress and de-tangle their little knotty manes.
I left shortly thereafter, and it was harder on Cailyn this time. Carys is usually the one that doesn’t want me to leave – but they changed roles on me tonight.
They always keep me on my toes…
I got back to Hospice around 7:30.
Chad was awake; his parents visiting.
He had a brief period of agitation and a few tremors — Ativan, to the rescue.
It’s about 10:30pm now, and he’s resting peacefully.
He has been trying to tell me something in between naps. I still can’t quite figure out what he’s trying to say.
It’s garbled. It’s incomplete. It’s a whisper.
I just can’t make it out.
He came out of one nap and looked around, then reached up with his left arm towards the ceiling for a few moments.
He wasn’t able to see me sitting on the couch to his left, and he was a little startled when I spoke.
He shrugged his shoulders when I asked him what he was doing, then went back to sleep.
He has woken up a few times since then, and will try to find me.
I’m quick to jump up and make sure he sees me.
And every time, he says a gentle “oh!” , before returning to sleep.
I like to think that’s his phrase for ‘There you are! You are here…’
I hope he sleeps well tonight.
And me, too.
A little after 11pm, Chad awoke.
He sat up & looked around.
Then his teeth started chattering – his whole body shaking.
It’s common for him to have chills and tremors these days – but this one wouldn’t let up.
The tumors, apparently, are in the hypothalamus region at this point, making it hard to regulate his body temperature at times.
His whole body was freezing – while moments earlier, he was warm to the touch.
I got the nurse and told her what was going on.
We wrapped him in some blankets and waited for someone to bring the meds in. It’s like signing the Declaration of Independence to get narcotics out of the medicine cabinets. It takes a while.
We finally got the meds in and while we were waiting for it take effect, the nurse left Chad and I alone.
Me: This stinks, Chad. I am so sorry you have to go through this. Those pesky tumors are causing so much havoc in there…
And the he lost it.
He cried, and tried to stifle it a few times so he wouldn’t upset me.
I assured him we were alone and it was okay – he needed to have a good cry.
I held his hand and repeatedly told him how proud I was, for his fight.
And I let him know I would be just as proud when he decided he was done fighting.
I just held his hand.
Wiped the tears away.
And told him I was so proud to be his partner in all of this.
He cried for some time. I was surprised, but glad that he let me be there for him. He has always guarded his emotions – always.
And I am grateful that he allowed me the opportunity to be there for him emotionally and physically.
He had a tight grip on my hand the whole time.
I wheeled the recliner next to the bed an held his hand until he fell asleep, until his grasp loosened.
I hope he’s resting peacefully now, thinking of everyone who loves and supports him.