"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.

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.

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.

Bonus Days Week 3 (December 29 - January 3rd)

Finally had to let "the cat out of the bag".  Too many people asking, had to spill the beans.  Was actually a big weight lifted.  I felt like I was "keeping things" from people.  Never want to tell a lie, but I was never in the position.

Connie's vitals are still doing well.  She's eating breakfast daily, not much for lunch, and some for dinner depending on the day.  Nausea has never really been a problem, she just isn't hungry.

Not really a whole lot to report.  Many have asked if they can visit, call, etc.  If you text me, I can let you know if it's "a good time".  Nurse usually calls Tuesday - Thursday around 10a, Nurse Assistant calls M - W - F around 4p.

We both appreciate all your kind thoughts and prayers.

Bonus Days 7 & 8 (December 19 - 20th)

Yesterday was a good morning, then after her afternoon nap, a bad rest of the day.

We settled on a hospice, New Century Hospice.  They called us after the third place that I called listed as "in network" (who wasn't) by our insurance, called them to refer us.  Thank goodness for them doing that.  Our insurance has NOT been helpful during this process.

As soon as they got our information and ran our pre certification, they were out here to sign papers.  I would guess in their business, time is literally of the essence, as people could be calling with days left for their loved one.  I don't think that's our case, but we'll see.  One of those papers was a Do Not Resuscitate (DNR) form which is required in Texas for EMT's.  EMT's are required by state law to do everything necessary to bring a person back if they've stopped breathing or their heart has stopped.  With this form, she'll be spared those chest compressions, etc.

Today (the 20th), we'll have a nurse come out to do an evaluation.  Then, along with "the team", she'll make a plan for how many visits Connie will need, what kind of supplies she'll need, etc.  As I wondered out loud if we were unique being in an RV, guy from Hospice said they had a client out here (Pioneer RV Park) last year.

The end will be a journey.

Bonus Day 6 (December 18th)

As with all things insurance, finding a hospice that's "in network" and one that we're comfortable with suck.  Our insurance website listed 4 in Corpus Christi.  I contacted all four of them.  One had their phone disconnected.  One told me they hadn't been in network since 2018.  One took all my information, then found out they were out of network.  One still hasn't gotten back to me with benefits.  <sigh>.

Connie's doing "OK" comparatively.  She's getting dressed and sitting up.  She's eating, which is great.  She's fairly focused, still having a ton of cognitive issues.

Knowing how stubborn she is about a lot of things, she'll be with us for quite awhile which is our best hope.

Bonus Day 5 (December 17th)

I for some reason have always remembered the first time I heard the phrase using "hospice".  It was the spring of 1984 in the teacher's lounge at Greeneview High School.  Don Green and I were in there with sub teacher Ed Prellar.  Somebody said that somebody was "going to hospice".

Don and I looked at each other.  No idea what the hell Hospice was.  Then, Ed said, it's where people go to die.

Understand, I was 23 years old.  I envisioned elephants going step by step, side by side, to their final resting place.  I couldn't shake that image and, obviously, I still can't.

So, on this day, I started the process of enlisting the services of Hospice.  Not sure what I'm looking for, but it's kind of when I hear it or see it, I'll know it.

We both want her to be able to stay here for as long as she can, but there are obvious limits to spending the rest of your time in an RV.  I have a limit to what I can do for her, especially in terms of her bathroom responsibilities.  It will be a challenge, but I'm up for it.

We also have to get a Do Not Resuscitate (DNR) form filled out and handy.  EMT's are obligated in the State of Texas to do everything to bring back a patient whose heart has stopped.  Having this DNR will relieve them of that obligation.

I hope it's going to be a long, long process.  She was given two years and told to "get her things in order" in the spring of 2014.  Here we are about to be in the year 2020.

Bonus Day 4 (December 16th)

This was a doctor's appointment and a chemo treatment.  It wasn't a good day.  Connie couldn't make the walk with her walker from the rig to the truck.  It was tough to watch.  But, again, she was a trooper and gutted it out.  We used the wheelchair the rest of the day.

We met with her Oncologist and I told the story from the 12th.  He basically said the brain is starting to shut her body down.  On the 12th, it shut it down then restarted.  It would continue to happen until it couldn't restart and she'd be gone.

He gave us the option of doing the next two treatments, a week off, then meeting with him on the first Monday of the New Year.  However, he said things weren't going to get better.  In most cases, they were going to get worse and the shut downs would be more frequent.

The other option was to skip the treatment and consult Hospice.  He gave us time to talk and decide.

We talked.  We talked about when this all started (back in 2013), we would always opt for quality of life vs. quantity.  Right now, her quality was terrible.  She doesn't want to go to the beach.  She doesn't want to sit out in the sun.  She spends 12-16 hours in bed, the rest of the time in the recliner.  We decided we're at that point.  She simply said, "Let's go home."

With those 3 words, we began the end of our time together.