02 Nov Patient Experience Day 38: Restlessness

My phone went off at 12:01 pm today as I was in the middle of a virtual business review. It was from my mother and it simply read: CALL ME.
My heart began to race, my mind went dark, and all I could think about was getting off the damn review and calling my mother. The clock seemed to tick away for the next 29 minutes.
I hopped off and called my mother immediately.
When she answered her voice was soft, shaky, and I could hear the fear in her words. She told me that my father wasn’t doing well. She said that he was restless all evening. He couldn’t even sit or lay still for more than 10 minutes at a time. Whether he got up to try and go to the bathroom, or sit in his chair, he just couldn’t stay in one place very long and didn’t sleep at all.
I asked a question, but feared the response, “What about his breathing, it is shallow, does he have hiccups or the cough?”
My mother said no not yet. She said that he is just restless. She told me that the hospice nurse was coming over soon. She also told me that she didn’t feel confident that my father would make it more than another week or two.
As soon as I was done with work I drove to my parents. As I walked in my mother gave me a huge hug. I could tell by her embrace that she appreciated the comfort, the emotional support, and the release that I was there for a bit.
When my father finally did get out of his bed, walked down the hallway, to the bathroom, you could see the weakness in his legs, the shake in his gait, and the fragility in his stance.
When he was done he walked down the hallway towards us. He thought he was going back to his room when he was actually walking to my old room, the one I had as a child. We redirected him and he chose to go into the living room, turn on TV, and sit in his recliner.
In front of it was the new hospital bed that hospice brought over. You could hear the air going in and out of it keeping the mattress inflated. The increased my fathers pain medication and placed him on morphine. I sat next to him on the love seat, leaned over, and asked how he was doing. His response was faint, a whisper, and I couldn’t understand. My mother asked him to repeat it. He did and still we could not make it out.
I went over to his left, knelt beside his chair, and said do you need some water? He nodded. I gave him his glass, he took a sip through the straw. I asked if he wanted some ice. He nodded. So I fed some ice shavings to him.
He then pointed and asked who the two people were over by the wall. There was no one there. I said no one.
Then he turned to me, and in a snap, he was coherent and said I needed to make sure I took care of the two rain spouts. They needed screws to hold them in place and make sure that the water would drain properly. I said I would make sure I ran to the hardware store and took care of it. He said thanks.
He then returned back to a quiet state. Every now and again he would whisper or mumble something that I couldn’t quit make out. I couldn’t understand what he wanted to say. Most of the afternoon was more of the same.
My mother went to get new bed sheets for the new hospital bed. I ordered some food for all of us from Dominos. My dad perked up when I asked what he wanted. He said the artisan pizza.
My mother and the food arrived almost in unison. I cut the pizza into smaller slices, got a coke for my dad, and took it to him. He didn’t touch the pizza at all. It just sat. The coke he took, guzzled it down, and as it went down, I could see his distended stomach protrude further out, back down, and see everything inside move along with it.
My father laid back down.His breathing was shallow, back and forth. Irregular. I had noticed the hiccups. The in and out of coherence.
Later on my father awoke, tried to get up, and fell twice. My mother said no more normal bed. It’s time for the hospital bed.
My own assessment is that my mother is spot on. I have seen this before. I have seen it in many cancer patients I have treated and been with over the years. Breathing changes, words become a faint whisper, there is a hint of them at moments and we hang on to those few moments. The hiccups. The mad coughs.
There is less sand in the hourglass. My fathers pen is beginning to dry. There is no more ink in the well for many more words. This is the last chapter he will write.
I told my mother if she needed anything, to call.
I kissed my father on the cheek, I leaned over and gave him a hug. I told him I loved him, blessed him as he has done so many times before to me. This was the first time he couldn’t verbalize it back.
However, I know.
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM
~CancerGeek