David, I hope you were able to get JZ's meds.

I literally had to run through the Haight with a bag of morphine to get her meds to her before her last dose wore off, and we cut off the breakthrough pain at 2.

And that's the SECOND time this year I've had to run home with pain meds which were stuck in pharmacy purgatory to get ahead of her pain.

It's a stupid system. But at least in this instance I told the discharging doctor I wasn't leaving until I had a scrip for liquid morphine because I wasn't just trusting the hospice would have their meds to her in time before 5:30. (In fact, they did not. They were 40 minutes late and that would have been pain at 7 or 8.)

On the plus side, even though I'm 62, I run almost every day so I didn't have a heart attack trying to help my wife. So that's a win that I dedicate to the Kezar Stadium steps.

My bitter bottom line hard earned wisdom which I impart to you freely: Never ever get in a position where you don't have the next pain dose in hand. Because then you're on a countdown clock and there are so many things that will stop or stall you getting pain meds.

When the hospital says, "Well, the hospice nurse will be there by 1pm and this dose will last until 5:30" it doesn't mean shit. Because as it turns out the hospice nurse was the ADMITTING Nurse and she didn't bring any drugs, and the drugs were going to be delivered by a third party and they were late.

There's this presumption that any handoff is going to go smoothly as intended, but...you can tell when you've been dropped after a while. And I knew the transition between hospital and hospice was not air tight coordinated by the way it had unfolded.

I mean, I didn't talk to a hospice rep until yesterday.

David, this is so hard, and you are being such an amazing partner and father.

I hope you get an elizabeth as regular hospice nurse. And by an elizabeth, I mean one like my friend & neighbor, a home hospice nurse who has a rep of fighting ANYONE for her patients & families.

Much love to you.

David, this is so hard, and you are being such an amazing partner and father.

As Matt noted, it's not that hard when you love them. I mean...I'm fucking tired. And fried. But I would sprint a couple miles to stop Jacqueline from being in pain and hurting and I know all of you would do the same for your beloveds.

I remember interviewing a guy who worked on a video shoot for a Tom Waits video and the way he described it underscored the long, difficult tedium of any one-day shoot.

And I asked him if it was hard and he said, "It was hard but it was a good hard." Like...some things are worth it.

When Mom was in hospice, they were tossing out morphine and Xanax like candy. I can only assume it was the mechanization of her amazing hospice team. Because Dad wasn’t equipped to fight that kind of red tape.

That’s some insane bullshit.

When Mom was in hospice, they were tossing out morphine and Xanax like candy.

More people in San Francisco died from opiate overdoses than Covid over the same time period. It's a huge problem here. There are just a thousand hoops to jump through and all the pharmacists are pistol whipped and flinchy because it lands on them if any box is unchecked.

I'm glad you could run like a superhero! Breakthrough pain is no minor problem, it baffles me how cavalier even nurses can be about getting people their pain meds.

When I was in the hospital the last time, they were five hours late with the drugs and I finally started crying and my tiny redheaded sister charged down the hall yelling in full Karen mode until a nurse finally got them to me. We told the doctor about it and he was (calm but) visibly angry. The whole crew that night were awful.

ION, did you ever yawn and sneeze at the same time? The decompression almost blew my eyeballs out

David, I wish that you did not have to learn as much about the medical system as you have had to learn.

Also yay to bureaucracy smashing people. They are very much the best.

We're receiving the suction machine from hospice today for her G-Tube. I'm going to need some insider tips, kat!

We never suctioned Grace's g-tube because she didn't have any intestinal blockage issues etc. But in general, suctioning any stoma can be extremely scary and extremely straightforward at the same time. Just ask whoever trains you how deep the suction catheter should go and look for the markings on the catheter itself and hold that spot with your fingers so you never go deeper than that. I'm not sure what size cath you'd use on a gtube, but if you happen to need 8 Fr, I have so many that it's stupid.