The Locked Room

Palliative care is care that focuses on providing people with specialized medical care for people with life-limiting illnesses. My Thesaurus offers the synonyms of the word palliative as soothing calming, but what my Merriam-Webster Thesaurus fails to include in their list of synonyms and antonyms for the word Palliative is dignity and faith.

I’ve been blessed to see that dignity piece first hand.  There has not been one nurse or aide in this care unit that has ever made us feel as though we are a burden to them.  I have a huge respect and immense gratitude for the men and women who work here.  They really care.  They don’t treat Wes as if he’s not here because he struggles to speak, they ask his opinion on what he wants, they don’t complain when his little escape alarm goes off again accidently, they don’t grouse about spills or messes, they have never once said “That’s not my job!”  They never fail to include family in their care.  They are protective and they are our front line of defense when I say, “He’s had enough company for today” They offer hugs and whisper words of encouragement.  More than once I’ve heard, “You’re in my prayers!”  They share stories, “I’m going through the cancer journey with my mom, so I know some of what you’re feeling!”  They will always ask if there’s anything they can do for me or my family.  Inevitably when they ask Wes if he’s doing alright they will turn to me and say, “And how are you doing?  Do you need anything?” “You just give us a shout if you need something!”

Earlier on when Wes was still having very restless nights a young nurse came and sat beside me in the wee morning hours and we talked, for about half an hour.  She was kneeling beside me as I sat in the chair and the entire time we talked she never once made me feel like I was taking up too much of her time and I knew the position she was in can’t have been comfortable, but she graciously shared her time.  At the end I thanked her for her care for my husband and she just smiled and said, “This is just what we do.”  I smiled back at her in the semi-darkness and said, “No, this is not something you just do, it’s not something you learn in a textbook or classroom, what you do is a gift.  I’ve always believed that and now to be at the receiving end of what you do as a nurse, I know it to be absolutely true!”

So, here’s an update.  Wes is doing so much better!  He’s much more alert, he started eating and drinking yesterday and he’s been able to say a few words.  Not being able to speak is probably his biggest frustration and he’s working hard to get some of his speech back.  Dr. Woelk said it’s called locked room syndrome.  It’s like you’re in a locked room and your yelling to get out and no one can hear you.   

He has some difficulty swallowing but he’s not choking or anything like that so overall with eating and drinking he’s doing super.  He’s up and about once in a while although it’s supposed to be with supervision, hmmm, of course today I found out that’s not always the case.  I walked in the room this afternoon and I noticed something had changed.  I asked if he had been out of bed while I was out for coffee with Nic.  He just smiled and said yeah.  I asked if there had been a nurse here to help him.  No. Ok, sometimes it’s better if I don’t always know everything he’s doing while I’m out of the room.  So yeah we have a lot to be thankful for, he’s still feisty.  He’s also been able to spend some real quality time with our own family as well as his side of the family and mine. That’s been worth so much!

This evening he got to spend time with our grand babies.  The palliative nurse encouraged us to have the grandchildren come and spend time with us here so that they could comprehend a bit better why Papa wasn’t where he should be.  They were busy but good and his wall is now decorated with rainbows and hearts on colored paper drawn by Blaique.

      

Dominic got to show him his new truck and Kinsley, well, if there would have been a chandelier she would have been swinging from it.  And baby Brooklyn, such a sweetheart.  I talked to her as sweet as pie and she just stared at me with her big eyes and then Mark swung her around to look at Papa and instantly the big smile came out.  Really? 

We were expecting one last visitor for the evening and after he left I could tell Wes was pretty much done.  So, I helped him get ready for bed, tucked him in, kissed him goodnight and proceeded to get ready for bed myself.  I was getting my laptop out and organizing all the little gizmos and gadgets I had hidden away for our grandchildren’s visit when I heard Wes say something.  I turned around and he was shoving his blankets aside still mumbling something.  I went to him and asked him what he needed.  He waved his hand at the little couch beside his bed, the one I sleep on and I realized that he wanted to help me set it up.  So, I quickly pulled the cushions off the couch and he stood at the one end as I stepped on the little lever so that the couch could be pulled to a bed.  He pulled his end of the couch into place and slowly made his way back to his bed.  He stumbled a bit, but, he made it.  I tucked him back in and thanked him.  He just smiled.

Always taking care of me.

Always the gentleman.

He will continue to fight.

Cause that’s just who he is.

And that locked room?  Well, God knows what’s going on in that locked room because he’s right there with him.  I have a feeling that Wes and God are having some pretty intense conversations in there.  And even though the rest of us out here can’t find a way to unlock the door to that room so that Wes can make himself completely understood, God is in there and we all know that no situation is ever really predictable when you throw God in the mix.

“In my distress I called to the Lord; I cried to my God for help.  From his temple he heard my voice; my cry came before him, into his ears.” Psalm 18:6