"Heeeere's Ray!!"

[Written: February 25, 2010]

Small Steps - When I came in today, I found dad to be a bit more "there" - compared to the other days, I suppose. That's the only way to look at this, in incremental steps.

I was thinking about something I learned from my sister years ago. It was when Marla was doing her clinical work after receiving her degree in music therapy from U. Of Miami. She was working at, I think the name of the place was, Sunland Hospital in Orlando? I went down to Florida for a visit, took in some DisneyWorld with Marla and was able to visit Sunland where I was able to see, first-hand, the kind of work my sister was doing. Simply put: I couldn't do that kind of work. Watching her deal with so many sick people, very sick people, severely handicapped and disabled people, most of them young children with short life expectancies. I remember asking Marla how she was able to cope with her feelings about getting close with so many kids only to have them pass away? "Small steps" pretty much summed up her response. "A child can't brush his/her teeth. We teach them so they can do it on their own... That is a huge victory," she explained. "And you learn how to cherish each and every one of those forward movements.

Small steps. Those are the kinds of things I'm learning to appreciate these days.

"Heeeere's Ray!!" - So it was time for Dad's medications earlier today and I could already see he was more lively this morning. When it came time for his eye-drops, (Dad seems to enjoy this process since it brings some normalcy back to his life, something he recognizes as part of his daily routine), seemingly having a better sense of what's going on, I watched as my father lifted his eye a bit wider today. To think I would get so excited about watching his eyebrows lift up a la Groucho Marx - isn't that wild? I say that because whenever we ask him to open his eyes, the first thing we see as any kind of indication that he's about to make his move - that's when the eyebrows edge upward, with his eyelids following close behind. I haven't grown tired of that one-two punch yet.

After Evangeline finished applying the eye drops, the nurses usually do a cleaning of the mouth, tooth-brushing routine. It comes in three stages, each step using a different kind of solution. From appearances, it looks like Dad enjoys this process. Who wouldn't? Not being able to drink any water, one's mouth starts to get pretty funky, especially with a food tube still in there.

So, anyway, there we were, Evangeline and Marion (student nurse) - both Filipino women, on one side of the bed, Dad's left side. I was standing on the other side, Dad's right side. As they were brushing and sucking out liquid, I was trying to imagine what this must feel like for my father. Then, it dawned on me, "Why am I not asking him?" The good news is that, increasingly, we can talk with Dad, and we're pretty certain (not sure), but pretty certain he's understanding us. So I asked him the question of the moment, "Does that feel good?"

Without hesitation, Dad's head started moving from side to side. I laughed, as did the nurses. But I wasn't exactly happy about his response. I mean, as funny as it may have been, I don't want him to be uncomfortable and was hoping he was enjoying having his mouth rinsed like that.

"He'll like this better," Marion said as she prepared the third and final solution for the third step. "I'm pretty sure about it."

At that, Evangeline opened up one of those ketchup-like packets and a white cream or ointment squirted out into a little container.

"Moisturizer," Evangeline explained. "It tastes like mint," she added.

Again I was hoping this would be something Dad would like - something to freshen his mouth.

"How's that?" I asked. "Does it taste like mint?"

Immediately, his mouth moved. Unable to project any sound because of the "trach" tube, all he can do at the moment to communicate, is mouth words. He shaped some words. Four of them.

"It tastes like shit."

Now I don't think this has anything to do with any kind of overly optimistic wishful thinking on the part of a loving family member. I say this because, Marion caught what happened at the same moment I did. And she laughed. Hard. Evangeline? Not so much. I actually found myself apologizing to her.

"He doesn't usually swear," I told her. "We certainly weren't allowed to use that kind of language in our home," I added.

Evangeline smiled and Marion and I shared our laugh but, even after that, I wasn't totally convinced we'd understood the precise words.

That's when I decided to ask the all important follow-up question.

"Dad," I poked his hand, his eyes closed. "Did you just say what I think you just said?"

His head moved up and down.

It was confirmed.

One. That my father said what he said.
And, two, that his sense of humor is alive and kicking.
That's the first time we've seen this since the fall.

It was good to see.

Spirit vs. Body

Untitled? - Sometimes, in fact, often as I write these entries, I underline some words, phrases - something that looks like it might be a good title, something catchy. Today, I was finding it hard to find anything that worked.

My father has been ill. Seriously ill, as many of my friends already know. He fell at his and my mom's home a few weeks ago and hit his head. This was the fall we'd been fearing for years. Why he fell?? Honestly, we're not totally positive. He's had balance issues at times but he's been pretty good with his walker over the past years. Did he fall because of something going on internally? (i.e., did the fall occur because of internal bleeding? Did he just slip, hit his head and then cause the internal injury? We don't know. What we do know is that the result was severe internal bleeding, which led to a "nasty" (as his neurosurgeon, Dr. Whitfield put it) blood clot on his brain. "Most folks don't survive a surgery like this one," the doctor told me a few days later. "Especially someone who is 85 years old."

But survive is what my father is apparently in the process of doing.

"Spirit vs. Body" - "His spirit is fighting back against his body," is what my dad's aid and now friend, Innocent, said to me just a few days after the surgery. This was before Dad even came close to opening his eyes. Innocent is Haitian, we think in his early 60's, although we're not sure. To tell you the truth, I'm not so sure Innocent even knows his own age. What we do know is that Innocent is special and I know Dad loves having Innocent at his bedside along side us while he is going through this challenge.

Those words, Innocent's words, have stuck with me for the past few weeks.

"Spirit fighting body."

Every morning I walk into my father's ICU room at the Cleveland Clinic Hospital in Weston, FL. I put down my backpack, walk over and kiss my dad on his forehead, hold his hand for about five minutes and then change the date and nurse information on the whiteboard which lies in front of Dad's bed. I'm usually there at 7:30 or 8:00 or so, doing my best to get settled so I can catch the doctors, perform my information intake so I then can pass along the info to my mom and siblings.

"It's hard to see someone you love so much going through something like this," is what my brother, Stuart, said to me last week. The day-to-day experience - it can be draining, emotionally and physically. I mean, I'm struggling with it on a daily basis so I can't come close to imagining how my almost-78 year old mom is handling this. After all, Mom and Dad have been married for almost 60 years now. My dream was to be partnered with a woman in life that same way. My folks have accomplished it - so it must be incredibly challenging for Mom to be going through this. I am sometimes awestruck when I watch how she's handling all of this.

Taking A Breath - That has been a key, at least for me. Which is a funny concept only because I'm writing this entry while listening to the hum and squeaking of the ventilator machine to my left. I hear the machine's "breathing" and it reminds me to stop, think and take in some deep breaths as well. And I feel better once I do that a bit. I do it while looking at my father as he rests. The tubes from his mouth have now been replaced by a "trach" and "peg" (feed) tubes in his throat and stomach areas respectively. I've been told and the staff here has assured all of us that these two procedures have helped to make Dad more comfortable, which they seem to have done. Until he can speak to us again, we can only hope he's doing okay. He seems to be resting comfortably and we're all thankful for that.

The good news? It looks like Dad will be moved out of ICU tomorrow and transferred to new location where they specialize in weaning people off ventilators. He's breathing but he's doing it with the assistance of the machine that's whispering over my shoulder. The goal is to get Dad back to where he doesn't need this contraption's help any more.

Wish us luck.

BTW - I've been hesitant to post things I've been writing over the past few weeks as I've moved my way through this experience. Most of it is what I'd call private - cathartic to write, for sure - but, private. Some of what I've written has been important for me to get out of my system and I may choose to post a few things on here, if anyone is interested.