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.

End Stages

These two days were a blur, to be honest.  Larry finally is in what are the end stages – minimal consciousness, although when there was, especially on Thursday, he sometimes understood what was going on but mostly he was upset as we wouldn’t let him hold his glass of water by himself or feed himself, and he would angrily insist on it while I had to insist that he couldn’t.  He more and more wasn’t able to help us with him going to the bathroom, in that moving him to the bedside commode was becoming more and more impossible.  Larry is not light even though you’d maybe think he would lose a lot of weight – there’s not much weight in his arms, but his midsection and abdomen are swollen and heavy.  It takes Joel and me to move him.  On Friday, the hospice nurse came to visit and instructed us to have him wear diapers at this point.  The diapers were delivered at the right point but too late for us to put the first one on as he ended up pissing himself on Friday night.   He had been only in boxer shorts and the flat pads really got most of it although it’s impossible to get it all.  We put a diaper on Friday night and then this morning (Saturday), he pissed in it and most was in the diaper but not all.   It’s a nightmare.  Noel came by this morning and showed us how to effectively change the diapers and the pads without having Larry get out of bed, which is effectively impossible now with the levels of consciousness he has.  He won’t be leaving the bed again.  The nurse yesterday, while also recommending the diapers, also got us liquid versions of the medicine he takes.  In the same consultation, she also mentioned that we don’t need to worry about feeding him or giving him water unless he asks for it.  Effectively at this point, it’s time to let him die.  I keep hoping it will happen overnight as part of me can’t bear to watch it happen, but I also don’t want him scared.   It’s certainly a blessing that he is confused, but also I know that he’s still there mentally.   I know because on Friday, Kristine and Jae from his work stopped by after I had checked Larry’s phone and saw he had received messages from them, and I replied and told them what was going on.  When he saw them, he lit up, was able to hug them, but that’s about it.  I just think he knows what is going to happen and would prefer to shut down and not deal with our sad faces and our insisting on this pill and that pill.  I don’t blame him.  I just don’t know what else to do.  It seems that there’s really not much time left at all at this point.   It’s been over a week since he came home now.  He went from kind of there (watching Star Wars) to this, which is mostly sleeping with an oxygen line to his nose.

Fran and I talk about the situation a lot and today we talked about how this is all something that you hear about and are relieved it’s not happening to you.  We know people feel that way, as I know it’s how I’d feel if I heard about it happening to someone else.  I know I’ve remarked on things like that to Larry in better days, and appreciated him that much more.  But it’s our turn.  I know my heart is shutting down for the future.  I will keep living and working, but I just don’t see how I’ll ever let someone in again emotionally after having had this 11-year experience.  I was lucky, I know that.  I was also unlucky, and I know that.  We did get to have this time together, and so I will always be grateful.  But moving on and possibly having to go through this again with someone else doesn’t seem like an option for me.  Ever.

Fran, Joel, and I are basically now just waiting for Larry to die.  It’s awful.  We can watch movies and TV (interestingly, putting Star Trek Deep Space Nine on has been one of the few things that keeps him somewhat interested, although I don’t think he is really up for watching anything anymore, but we’ll try this afternoon), and it’s a way to briefly escape the mindset of what is going on.   Then Larry moans and is grabbing at himself and it’s clear that he’s gone to the bathroom and you’re forcibly reminded that yeah, life is awful  and death is at the door and you just have to keep yourself from screaming and get to the business of caring for him.  It’s all very hard.  Dying at home is not at all what you might think it could be.   I’m sure in cases, people will die “peacefully” and quickly at home, with little mess and fuss.  That is not the case here.  Do I think it’s better that we’re able to be at home and not stuck in a waiting room – yeah.  But the times when he needs more care are those times when I’d kill for a nurse on call to help.  Larry no longer seems to know or care – but I guess he would know enough that he’s uncomfortable if he were at the hospital.   There’s no easy definitive answer.  It’s all just terrible.  I just don’t think I can do this again for someone.   I am only able to have done this as Fran and Joel were here.  If I had been alone, I probably would have had to have hired some part-time help.  Emotionally though, visits with friends has been essential.  Dying and Cancer are the worst, is basically what I’m saying.

A New Year Begins

Happy New Year, right?   It’s obvious this is the end stretch.  Larry is barely coherent, and when he is awake (which is when we get him up to go to the bathroom or for meals), he gets frustrated at the fact that he can’t be independent.  So it’s good I guess that he does feel those emotions, and that he still does recognize us and can interact slightly during those times, but the most part, he’s sleeping.  And basically drifting away. 4:30 this morning, he had to pee, and then pee again around 6, and he was more animated than typical, and I tried to listen to some of the things he was saying to see if I could get anything from it, but the most that was understandable was that he had a vision, of something after school.  Other than that, it was not much sleep, as I had stayed up to get a NYE kiss with my one true love one last time.  I didn’t drink that much so no hangover to speak of, so that’s good.

We watched the Rose Parade (most of it I guess) and that was nice to have on in the background, although it was hard for both Fran and I to really cope during the day.  I find I do get into a mindset of pushing out reality and I keep my emotions in check.  But some things just will trigger me to sob and get uncontrollable.  I don’t even know what it is – I guess it’s when I let myself think about the situation, and the reality that I am truly losing Larry from the world, forever.  I want to believe that he’ll be at peace and feel release, but I am selfish and want him here with me for a few more decades.  But I won’t, and all these people who get to have their loved ones while I get mine ripped away.  They mean well with their checking in and ‘how’s he doing’ but all I really want is to say I fucking hate you all for getting to live your life and have fun and not have the reality of life shit on your face and smashed into every orifice so that you don’t forget.  It’s so fucking unfair.

Anyway, I played some video games today to just get my head out of things as it gets hard to watch TV and sit in the living room with the gang after a while.  I had bought “PC Building Simulator” on Steam and OMG this game is so therapeutic.  You basically are building, fixing, or upgrading virtual PCs and it’s just great.  Killed a few hours that way.  Besides that, it’s taking care of Larry during meals and when he has to go to the bathroom.  At this point, he can’t do anything himself, so we’re literally carrying him to a bedside commode for shitting, or using a plastic urinal container for peeing.   And inevitably there are spills, as well as wiping his ass.  It’s insane – I don’t mind doing this because it’s him.  The smells are godawful and yes, there’s blood.  But I love him and I actually do take my vows seriously to him.  I, along with Fran and Joel, are here to take care of him until his last breath.  It’s going to all-but-destroy us in the process, but Larry is someone who is beyond worth it.  It just kills me though when he can’t hold his arms up to feed himself, or can’t really stand on his legs, or rants about some thing (a pill, water, food) that is right in front of him but he’s completely unaware.   It’s just awful.

I’m taking the rest of the week off too – and have reached out to PwC to let them know I’m probably going to take a few weeks of leave of absence while this runs its course.

A Decade Ends

The end of this fucking year and decade.  The decade itself was probably my personal best decade ever as I spent it living with and loving Larry, the one I always dreamed of having in my life.   But it also is the decade in which I was on the path of losing him.  2020 may be when he dies, but he died this December, at least the full Larry we all love.  Yes, there are glimpses of Larry in who he is now, but it’s all mixed in with just confusion and exhaustion.  I miss him. 2019 tho?  Fuck this year.  Despite there being some fun stuff, this year has been too much and I don’t plan on recapping it here.  Just ugh.  Today, the hospice nurse Jennifer stopped by – Larry’s oxygen levels are low, as is sodium, so we have to try to work on that, but there’s the unsaid statement of ‘does it really matter at this point?’ She then basically told us that regardless, there’s not much time left – a week or so at this point.  It’s not surprising and i was surprised she even said 2 weeks.  We just can’t have him suffer.

Paras and Carey came by in the early afternoon.  They had indicated they wanted to yesterday, and this morning I texted them beforehand to let them know they don’t have to come over as I think I want most people, those who haven’t seen him lately, to have a strong, happy memory of Larry.   But they were okay and wanted to come, and I am glad they did.   It’s hard to see new reactions to Larry – they couldn’t help but cry.   Larry engaged with them a little, but at this point, he’s so out of it.  Nothing like when he talked a little to Stacie and Trent just a few days ago.  Paras & Carey had printed out some pictures from adventures and parties the last few years – it was a wonderful reminder of times past.  Afterwards, Sveta came over and hung out for a few hours – watching Annie with us and also bringing a ton of food.  Also we received a delivery from Katz’s Delicatessen in NYC, courtesy of Arielle of my NBC days!   So incredibly generous, and great for our NYE dinner.  Watched Yesterday as well as I was enjoying watching movies with musical numbers that Larry liked.  Not sure he watched, but you never know.  Fran and Joel went to bed around 11pm- I made it to midnight.  Wasn’t going to not get my kiss from my husband.

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.

Since 2001 or so, sharing stuff