Chad slept all day, with a few, brief moments of being awake.
He did eat about a third of a can of soup late in the afternoon, but hasn’t had a decent food intake since last Friday morning, when he ate a decent breakfast. I’m told he wasn’t really interested, but ate a few bites because the staff put it in front of him.
He mostly eats a spoonful of pudding or applesauce to help get his meds down, and that’s it. I can hear his stomach growling first thing in the morning, but he’s just not interested in food. I even checked his blood sugar yesterday, just to see what his glucose level was without any substantial food in his system. It was normal, at 115, and I told him I would stop pushing food on him – he seemed relieved. The small amount of nourishment he does receive seems to be enough to keep him satisfied, I suppose.
The nurse explained it to me pretty simply, stating that it’s almost like having the flu; the hunger it there, but you just don’t feel like eating. From nausea, fever, a general feeling of being unwell…he’s just not hungry. And that’s okay. I get it.
It took quite a while to get his medications in Monday morning.
Even with pudding and sips of water, he couldn’t seem to swallow of a few pills. They got trapped in his cheek or he just couldn’t get them down. Eventually, he did, after we positioned them on his tongue a bit better.
Since he was sleeping so soundly yesterday, I went home for a little rest. I appreciate having a fold-out couch in Chad’s room, but my poor back couldn’t take another night of it. Of course, I would have stayed if he was in any distress.
The girls also miss me, as I do them. Carys has memorized my cell number and calls me whenever she feels the need — and just gabs about random stuff. The conversation usually ends in tears, with her telling me to come home. Poor child.
So, I went home.
Cailyn was laying on my bed watching cartoons and I certainly surprised her. She was so glad to see me and I took a little nap with her tucked under my arm.
My mom woke me up in time to pick Carys up from school — and she was equally excited! She was a little chatterbox all the way home.
We did routine things, like dinner, baths, bedtime.
It was nice to do something normal, for a change.
I took the girls to school this morning. All three of us were pretty happy to be on our regular routine, even if it was for a few hours.
I explained to them that I probably wouldn’t be home this evening, but that I would see them tomorrow after school. They accepted that pretty well, probably because I was there, physically telling them. They weren’t listening to my voice through the phone. I think that made a big difference.
Dividing my time between the girls and Chad is quite difficult and emotionally draining. In my head, I know I am doing the best I possibly can. But it certainly breaks my heart to hear my children crying for me on the phone. And it breaks my heart when I do feel it’s best to leave Chad for a few hours — only to hear that he called my name or was looking for me.
In the end, it is a great comfort to know that everyone is receiving the care they need; the girls are being spoiled rotten by various family members, and Chad is receiving the best care possible from a team of people that genuinely care about his dignity, well-being and comfort.
Despite the circumstances, I couldn’t ask for a better caregiving situation for my children or my husband.
Today, Chad is resting comfortably.
I gently touched his hand to let him know I was here, and he opened his eyes briefly.
As I get settled, he woke up a little bit.
Two CNAs came in to change him, and he asked for a pen – very clearly.
I scrambled for a piece of paper, but only found an envelope.
I took it to him, hoping he had something to tell me – or anyone.
But he seemed a little confused as to what to do with the pen and paper. He kept handing the pen to me, and I explained that I didn’t know what he wanted to write. After a few minutes of staring at each other and the pen and paper, we decided to give a try later.
He got his medicine down okay this morning, after a while.
Still no fever, which is good. It makes him feel so bad when it creeps up.
He took a few sips of apple juice for me, but seemed a little confused by the straw. He did remember what to do, after a few attempts.
He’s in and out of sleep, only waking if there is a loud noise in the hallway or if he’s wet.
The doctor did increase his morphine a bit yesterday, as well as his Ativan for anxiety/agitation.
He’s been having quite a bit of breakthrough pain during the day, so we’re trying to stay on top of that.
I hate the thought of him hurting, but not being able to tell us that he’s in pain.
I also hate the thought of doping him up all the time, but at this point, there is no other way to effectively manage his pain. At least he can rest comfortably with the morphine, instead of tossing and turning with headaches.