"How's Connie?"

I get that a lot.  How do I answer that?  That's a tough one.  Connie always used a stock answer of "hanging in there", and I guess that's an accurate depiction of her current state.

She's still a roller coaster, although the good days aren't as good.  To give you an example, a few days ago she said she thinks she's going to make it to her birthday (March 1st), but all bets are off after that.  Then, yesterday, she's asking the nurse about 'graduating' from hospice.  That's the roller coaster.  It's the end of the 2nd month of hospice care and we've already had a few "this is the beginning of the end" moments, and just as many "she's going to be here through next Christmas".

Most days are Groundhog Day.  Nothing on the schedule other than which nurse is coming.  She's awake around 7 - 7:30.  Has a small breakfast, a 'boost' protein drink, and some bites for dinner.  She rotates between sitting up in bed and laying down.  When she's sitting up, she watches the park out her window, listens to either the radio or what's on the TV in the living room.

We've just recently starting trying again to get her to sit on the edge of the bed, even stand while being propped up.  I hope that type of progress continues.  It's baby steps, and she's exhausted after that short 'workout'.  She wants to at least get out of the bedroom.  Get out of diapers.  Sit out in the living room.  Some days I think that's going to happen in the next few days.  Some days, I think that's never happening.

However, the shooting pain headaches have returned.  The short term memory is concerning.  Some days she's really focused, other days she just wants to sleep. 

Roller Coaster.

At least we tried.....

If you've been following, you'll know that my daughter and her wonderful family are on their planned visit to Port A.  Hospice provided 5 days of "respite care", where Connie would be cared for by a facility which started on Sunday.

My Mom went to a nursing care facility when things were looking like they weren't going to go well.  She hated it.  I hated seeing her in there.  She lasted about 3 weeks and literally died from "failure to thrive", which means she just stopped wanting to live.

That was 3 years ago.  Knowing for almost 7 years that this was a terminal illness with Connie, we've always had very frank discussions about "things".  One thing that I was pretty firm on was that I didn't want to have her go to a facility like that for the end of her life.  I thought a few days would be different.  I was wrong.

She went to the facility Sunday.  Monday morning at 6a I got a text from our hospice nurse that Connie wanted to come home.  There was some talking off the ledge.  She decided to try and "gut it out".  This morning (Tuesday) she said she wanted to come home.  So, she will later this afternoon.

Not sure what all went on, not sure that I'll ever know.  Had a couple of days of respite.  I certainly wouldn't handle it thinking I put my wife somewhere she hated so that I could have some free time.

At least we tried.

This Trop Rock "thing"

Many of you have wondered about all the Facebook posts I make about "Trop Rock", etc.  Here's the history.

Most of you know my history, that I was a band director, member of the Ohio State Marching Band, etc.  Connie always enjoyed live music.  One of our first dates was to Hara Arena and the Marshall Tucker Band Concert.

We've had XM Radio since sometime in the 1990's.  Then, they merged with Sirius Radio, and we got Radio Margaritaville.  We'd been listening to it on the laptop for a few years, but this was huge.  Once we became full time RV'ers, we always had a way to listen to SiriusXM.  Around 1p or so, Radio Margaritaville would always come on.  It was JD Spradlin's time slot usually, except for Fridays when Steve Huntington and Greg Dumas would do this Happy Hour show at 5p ET from New Orleans.  That was always a must listen.

Connie got diagnosed in 2013, so the trip from Ohio to Texas (and back) was about the only traveling we could do.  In the fall of 2014, there was this Music Festival in Panama City Beach, FL (called "Chasing the Sun") that was going to feature Peter Mayer (lead guitarist) on Friday, Nadirah Shakoor (backup vocals) on Saturday and Mac McAnally (guitar player) on Sunday.  They were all members of Buffett's Coral Reefer Band.  How cool!

There were a bunch of other acts, we figured to all be Buffett cover bands, OK.  We'll deal with that.  Should be a good party.

On Friday, this band called the Boat Drunks come on.  Man they were good.  Not only doing original music, but all these people knew the music.  How could that be?  I'd never heard of them, let alone their music.  Come to find out, "they were a thing" at Meeting of the Minds in Key West.

Another group that caught my attention was "Jerry Diaz and Hannah's Reef".  He said he was from Texas.  Wait. Did he just say he played in Port Aransas, TX?  We'll have to look him up.  Kind of liked his group.

That's how it all began.  We were going on a cruise out of Galveston later that fall, and stayed the night before in Kemah, TX because this Diaz guy was playing at this joint called T-Bone Tom's.  Came to learn it was "the" place for Trop Rock in Texas.  We always started catching the Boat Drunks at different venues they played.

A couple years later, Radio Margaritaville started playing this song "Coast" by The Detentions.  Connie was sure it was about Port A.  I wasn't sure.  Could be anywhere.  That February, we found out about the Pirates & Poets Songwriters Invitational was going to be held in Port A.  One of the Detentions was playing in it, Jerry Diaz was playing at Shorty's.  Let's do it.

Never been a good audience member.  Always too critical.  I listen to things differently.  I'm much more comfortable hanging back stage and shooting the shit with other performers.  All of sudden, I'm having to be a fan boy and mingle as an audience member with the performers.  All I wanted to know from this Sullivan guy was if Coast was written about Port A?  I finally got the nerve up to introduce myself as a fellow teacher during intermission.  He couldn't have been nicer.  Then I asked about "Coast".  He looked at me like I was idiot.  "Of course, it was."  Then, I felt like an idiot and got the hell out of the conversation.

Needed to delve deeper into these artists and this genre.  Subscribed to a few things.  Downloaded lots of music via Apple Music.

Since then, we've gone to Trop Rock festivals in a few different cities.  One of them was Pardi Gras in New Orleans, hosted by Jerry Diaz and his wife, Mary.  There, I met Eric Babin (and later on his wife Gina) who broadcasts these shows live on RadioTropRock.com.  Game changer.  Events we never would have known about we were listening to.

So now, as my wife literally can't travel, we can hear many of these artists, many of whom (including the Detentions) we've become friends with over the last few years.  I know Eric and Gina think they provide a great job of serving the fans of Trop Rock.  Not sure they know the joy they bring the shut ins who really enjoy this genre of music and can't get to the shows they would like to go to.

Respite Care

Had a great visit with our daughter Bethany last weekend.

Connie's vitals have remained stable.  Her brain is pretty much limiting things.  She sleeps a lot (16-18 hours a day).  Sometimes has trouble making any words, other times words come out in small bites.  Other times, she can speak pretty clearly.  Not eating much if anything at all.

She had a pretty bad cough for about a week.  Seems to be finally over it.

The Davis family (Bethany, James, Kingsley & Keegan) had previously planned a week vacation here on the 9th of February which is still going to happen.  With a 4 year old and an 11 month old, we (me, Bethany, the nurses) all felt it was a better option to take advantage of New Century's "Respite Care".  Short description is they will provide transportation for Connie to a nursing facility for 5 days of care.  That way we can do a short visit or two, then she'll be back on Friday before they leave for an extended visit. 

This benefit is available every 30 days.  Never knew when to pull the trigger, but I think this is a good option.  Should allow everyone to be pretty relaxed for 5 solid days.

Thanks, as always, for your kind thoughts.