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.

Another episode

Things had been status quo until this past Tuesday afternoon.  I noticed the all too familiar starting to slouch as she sat on the couch.  By evening, she was having another brain shut down episode.
Since then, we’ve been on daily nurse visits and she’s been confined to the bed.  She’s had a bad cough that manifests itself enough that she hasn’t been able to get that deep, solid sleep that usually helps the brain reset.
She’s tried to stand, but can’t even sit on the bed for a few minutes without eventually needing to lay down.
Her vitals have been OK.  She had a bit of gurgling in her lungs Wednesday that wasn’t evident yesterday (Thursday), which is good.  She’s not gained control of her right side, specifically her right hand and right leg, which isn’t good.
Bethany is coming to visit today.  Hospice nurse said she has a lot more "showed up too late" stories than "showed up too early".  It will be great to see her, and great for her to see her Mama.
That’s the update for now.  Thanks as always for those who have offered their help and their kind thoughts.

Losing a friend

I've been surrounded by lots of talk about death lately.  I've been preparing for it for almost 7 years now, and I know, I won't be ready for it.

Today, I was killing some time before an event at Pioneer, and I glanced through Facebook.  I saw a post my friend Lenny had made about losing a friend, and he posted a picture of himself with his friend.  I passed the phone over to Connie and said how good Lenny looked.  We hadn't seen him for awhile, although we just talked to each other last week.

He had called because he wanted to check on Connie.  To see "how his buddy" was.  They talked a bit.  Then she went to bed and I called him back, and we talked a bit.  At the end of the call, we had both made each other cry.  We ended up texting each other after we hung up, and we exchanged our love for each other.

As I took the phone back this morning, I realized it wasn't Lenny who had posted that.  It was his friend posting about Lenny.  He had passed away over night.  I called one of our old neighbors and she filled me in a bit.  I was literally in shock.  Connie and I both cried and hugged.  Then we went to our event.

Before dinner tonight, we both had a beer and toasted our friend.   We cried some more.  I told Connie that I had wanted Lenny to host her "Celebration of Life" parties in Ashtabula that she's put in her dying wishes.  it was going to be fitting that we do it in his garage where the three of us had so damn many good times.

Lenny was probably the first "non teaching" friend I had had in my adult life.  He didn't know me from school or work.  He knew me as the guy down the street who politely waved as I drove by.  A guy who finally got tired of waving when I saw him out, pulled in one day with my wife and a 12 pack of beer and said, "Hi.  We're the Sims."  That was the spring of 1995.  Damn, that was almost 25 years ago.

We golfed together.  We went out together.  We went to the Elks together.  But mostly, we sat at each other's houses, just down the street from each other, and just enjoyed each other's company.  A friendship that couldn't have been simpler.

When we got rid of the house, he got first choice of everything after my daughter.  He still used my old snow thrower (Big Red).  He got Fuzzy the Bear (a fixture of our basement).  He took the old fire bell off the wall. 

My last night in Ashtabula, before starting full time RV'ing, I stayed at his house.  He stole my car keys so that I wouldn't ghost him in the morning without saying good bye.

Tonight, after Connie went to bed, I was going to call up some friends and see who wanted to get hammered.  If nobody did, I was going to hit the bars in town.  Instead, I did a little more healthy thing and sat home, watched a couple of Disney movies that I'd never seen.  I drank water and ate some M&M's.  I cried a few more times.

As I said, I've been preparing for death for awhile.  But when one hits you out of the blue, it shows you your never prepared.  And as I've always said, you just never know.  I damn sure didn't today and I'm still in denial that I won't see my friend again. 

RIP Leonard.  I'm thinking of you.  Love you, man.

Bonus Month 1 in the books

It's been over a month now.

I think being off the chemo has given Connie a bit of a lift.  Her spirits are good.  She thinks she can do things (even though she often bails at the last minute). 

The brain is still her biggest problem.  Finding the right words, having a thought and not being able to finish it, etc.  Doesn't let her have good balance.  I'm starting to notice pretty large short term memory loss (we talked about a show this morning at pretty good length, tonight she didn't know what I was talking about).

Still a lot of sleep time.  A normal day is she's up at 8, in bed from noon-ish to 2-ish, down for bed around 7p.  Now that football is over, I'm catching up on a lot of Netflix and Prime Video.  Plus, the business has been hopping, which is really helpful.

Her appetite is as good as can be expected.  She has a breakfast, a snack, one of those Boost protein drinks, and a dinner.  All small portions, but at least she's eating.

Hospice nurses are here every day through the week at this point for 30-60 minutes.  We've got oxygen ready to roll, as we feel it's going to be a necessity and wanted it here for when that eventuality happens.

A few people have been nice enough to call, stop over, bake some things.  All of which is really appreciated.  I can run to the grocery, post office and not be a basket case if I time it around one of her naps or a nurse visit.  She actually sat out and watched a little football Sunday, along with going to the beach once for about 45 minutes.

That's pretty much the update, thanks for taking the time to think of my wife.

Humbled

Over the last couple of days, I posted about Connie's situation.  It was a weight lifted.  I was humbled and brought to tears often by the many comments on FB, texts and calls.  Thanks.

Moving forward, if you'd like to give Connie a call, text me first and I'll let you know the current situation.  If you're in the Coastal Bend and would like to stop by here at Pioneer, the same.  We'll get a time set up  (Of course, stopping by means you'll have to deal with Twiddle Dee and Twiddle Dum)

Love to all of you.