Tag Archives: hospice care

Right Before the End

We’ve started 24-hour hospice care.   Later on Saturday, Larry started moaning and we realized that we needed to call the hospice number.  I told them what was going on and they agreed, sending Edison, an LVN, over at 6pm and through to 8am the first night, to be able to take care of Larry.  Larry really stopped being responsive at this time, in terms of being able to communicate.  He could grunt and react in pain or surprise to certain things, but we don’t hear words anymore.  That Saturday night, Sveta came over.  It was nice to have her there.  I used that time for us to go through the many pictures I’ve taken over the last 11 years – a nice trip through memories.  We also just drank wine, cried, and helped each other get through the night and this new experience of having someone there all the time.  Sveta drove me to Carl’s Jr. to get some dinner, and then went home.  It was nice to get out of the house.  A happy surprise was that my cousin Rich and his wife Su sent a framed print of the doppelgänger we found at the Norton Simon museum.  It was amazing, and provided a much needed smile.

On Sunday, we then met Kathleen, who was taking the 8am-8pm shift.  Both of these nurses have been very kind and are able to take care of Larry – and I think there’s only been one time the diaper needed changing, and I’m still thankful to Noel, the bather, who came over on Saturday morning to help us out as Larry had filled the diaper that morning and while I had been able to at least get Larry out of it and put a new diaper kind of on him, it was not a solid job.  Noel showed how to do it effectively.  I’ve not had to do it though as we now have 24-hour care.  During the day on Sunday, we watched a couple movies (Casino Royale, Inside Out) and then in the evening, Nicki came over and we all watched the Golden Globes ceremony and had some dinner from Maria’s.  During this time, Larry was basically unconscious and sleeping, although we’ve learned that hearing is the last sense to go, so he is able to listen. His understanding isn’t known and he barely responds now.

It’s Monday now, and it’s getting worse.  His breathing is very labored and his vitals are certainly dropping more and more.  I can’t imagine he will live beyond today, but because his heart is so young still, he may fight longer than he would if he were in his 70s or 80s.  He’s getting morphine and Ativan every hour to try to help calm his breathing, but it really isn’t working.  So we’re bedside most of the time now.

Losing Larry

This was a quiet, and unfortunately, kind of sad day.  Not sad because it was quiet, but it truly was a day where Larry really just couldn’t get out of bed and his awareness is nearly wiped out.  We’re basically getting him close to an incapacitated, Alzheimer’s patient now.  There’s moments where he can communicate and interact, but for the most part, his hands are nearly useless in terms of holding things for himself, he can’t feed himself, for the bathroom he needs us to get him to the bedside commode and help him wipe, and it’s just exhausting.  This all literally happened in the span of a few days.  I’m starting to feel numb from it.  I can’t though, as when I see him and help him, I know he’s there somewhere..  The poor guy just has run out of time and luck.  I do my best to comfort Fran and all three of us work our best to get through this together.  I’m just more and more resentful of others and lives that don’t have this.  We watched Frozen 2 screener today, as well as Winnie the Pooh and Ratatouille.  It kind of seems watching animated or kids entertainment is helpful and something he can watch, but honestly, even those don’t keep his attention for long and he starts nodding off.  Dr Fakih had told us he’ll just get sleepier and sleepier, until finally his body fails.  I hate that fucker so much but he was not wrong – just a cold asshole.  The things he’s said have not been untrue.  I’m tired, I know Fran and Joel are tired, and everyone else gets to move on with their lives and whistle by the graveyard relieved they’re not the ones going through this.  I hate it.  I love Larry so goddamned much and will be there every step of the way, but I’ve realized I don’t think I’ll ever commit myself to another person again.  I can’t bear to go through this again.

Last Night of Hanukkah

A bit quieter of a day thus far, although it was a pleasant morning.   After some grouchiness from Larry because he didn’t want to eat and take pills while in the bed, and wanted to be moved to the couch, he was alert and wanted to watch Star Wars again.   He also ate his French toast that Fran wonderfully made, and it was a good experience.  Only made it to about the 1.5 hour mark in the movie though and I could tell he just needed more rest, so he’s sleeping now.  He’s wheezing a bit more than normal, and that I guess is to be expected and why we have the oxygen tanks.  We’re also expecting a visit from a rabbi today, which may be good.

The rabbi came by and it was a good visit – the rabbi was orthodox, but he was very very personable and relatable.  He did some prayers with Larry and Larry was able to repeat and follow along with them.  Nicki was also there for this at this time and it was frankly a nice experience.  The Rabbi wanted us to definitely do the last night of Hanukkah – which we did.  We did finish up the rest of the Star Wars then, and let Larry then sleep.

Nicki hung out with me and watched TV (we watched the first 2 hours of the Witcher) and it was clear by the evening that Larry’s lucidity was wearing away.  Who he was in the morning was a far cry from who he was by night.   We all watched the movie 1917 (fantastic, btw) and Larry was in and out.  I tried to talk to Larry a bit while we were all starting to get to sleep in hopes maybe there was some lucidity – as I wanted to know what he preferred for his final wishes.  He just didn’t know.  Fran has told me that his grandfather has already purchased plots for him back in New Jersey, and I am good with that being the path forward.  I know I’ll be back there to visit him in person, but I also know that I don’t need a gravesite to memorialize him.   Mila and I were discussing it today (Dec 30) and I think something like a small garden of sorts on the roof deck would be wonderful.  I just can’t fucking believe this.  Nicki was flying back to Florida tomorrow, so this was effectively her saying goodbye to Larry.  She had a moment crying with me before she left, which was the first time she’s really broken down.  I obviously know what she’s feeling.  When I left myself truly feel these moments, I can’t help but cry.

The last pictures of us with Larry are below, with him somewhat lucid.   It is devastating to know that, writing this from late January.  It’s so ungodly fair this happened.

Star Wars at Home

This morning started out with Alyssa leaving and saying her goodbyes with Larry one last time.   Later that morning, Stacie and Trent came over to visit with Larry.   It was a very nice time spent with them – I’m glad they could do so, as we were able to reminisce a little and just have a nice conversation with Larry.  They left before noon and we then got Larry downstairs.   It was very hard to have him go up and down stairs.   A nurse from True Care was coming at 1pm, and we also had Nicki, Sveta, and Mila coming over.  Not only that, I had been able to reach out to friends in the industry (George and Greg, effectively) about a Star Wars Rise of Skywalker screener and Greg had one!   He wasn’t in town on Thursday, but managed to FedEx it to us overnight so it got here in the morning today.  Not only that, but he also sent Uncut Gems, 1917, and Frozen 2. Unbelievable.  The nurse’s visit was good, and she encouraged us to move the hospital bed to the living room level, which honestly made the most sense so he’d have TV, be around everyone, and not have to deal with stairs anymore.  So we cleared out the area around where the Eames chair was, moving that over by the dining room table, and made room for the hospital bed to be relocated.  The highlight of the day was of course getting to watch Star Wars!  It was a lot of fun, a lot of the criticism is warranted, but it’s still one hell of a ride.  Very enjoyable, but still like The Last Jedi the best of this new trilogy.  Larry couldn’t really stay awake for most of it and was in and out, but I tried my best to keep him engaged.

Afterwards, we all just had a pleasant evening hanging out, drinking wine, telling stories, lighting Hanukkah candles, laughing, crying, playing Cards Against Humanity, eating Taco Bell.  I love my friends so much and they’ve been a godsend in this.  I don’t know what I’d do without them, as well as Fran and Joel obviously.   It was the first night that Larry spent down in the living room and I slept on the couch near him.  It wasn’t easy.  He peed once in the night which went well as I had him stand up, but the second time he did it laying down into the urinal and it was a mess.  Had to change the bed, do the sheets and his clothes, change his clothes to be clean, and then finally put him back to sleep.  I’m a little tired today (Sunday).

A Day Away

Larry’s father arranged travel in to visit with Larry and Alyssa today.  Accordingly, Fran, Joel and I were not going to stick around for it.  In the morning though, Larry did get bathed by a bathing assistant which was much needed.  So after that, we brought Larry down to the living room.  We then went over to the Americana.  Fran was able to get her hair blown at Dry Bar there while Joel and I went to Eggslut for breakfast, which was surprisingly good.  After Fran was done, she rejoined us and we spent some time at Barnes & Noble, then the Apple Store, and some more wandering around until it was around lunch and then we went to Amici for pizza and wine.   We spent a good amount of time there people watching and then Nicki ended up joining us.  We walked all around the Americana as well as over to Galleria, getting Larry some larger underwear and sleeping pants, as he’d swelled quite a bit and was getting his circulation cut.  We ended up at the wine bar area, and then around 6pm, headed back home.  His father was gone by then and Alyssa gave us a bit of a rundown on what happened, which wasn’t much. Not sure he is able to handle what is happening, but I don’t care.  I only care that Larry was okay.  It was a lost day for us to spend with Larry, but this way we won’t feel remorse over any closure in that regard.   During the day, I had called True Care to get a hospital bed delivered as it became clear he couldn’t sleep in our bed anymore and needed more control over body position.  Had it installed up in our bedroom that night.  He was able to sleep and I took some CBD oil drops before bed to ensure I was able to sleep, which I did better than the night before.