on life

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.

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