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Living Forward

Primarily journaling the medical adventures of Neal (stage IV colon cancer), with occasional updates on Benjamin, Jeremy and Matthew (CVID) intermixed. Despite several d[...] read more

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Redefining Hospice - He's All In

Hospice is a very odd experience when you’re young. Most of us think of hospice and we think of that elderly relative that we visited when we were younger and they were resting peacefully, probably sleeping in a bed while we said our goodbyes wondering if they even knew that we were there. Maybe it was a grandparent, or it might have been an elderly parent. But you sure don’t expect to see many 52 year old guys in a hospice house...unless they are visiting. In many ways it seems like the staff here didn’t expect someone like Neal either. Let’s be honest, he’s never been just another patient. As the admitting nurse said to me, “he looks a lot better in person than he does on paper.” In other words, while he’s feeling and looking SO much better than he did in the hospital, it’s easy to forget that he’s a really really sick guy.

So how did we get here? On Wednesday we met with the hospice team and went over options. Neal decided that the hospital affiliated hospice house would be the best choice, since it provides round the clock care as needed, something he wouldn’t get at home. Also, having 3 rambunctious boys in the house doesn’t always make for the most tranquil of settings, much as we love them. So it was decided to transfer to Sawtelle Family Hospice in Reading. It’s about 8 minutes from home so is very convenient, and it’s a small set up with only 10 patients at a time. I’m told people are just dying to get in *crickets*

During discharge Neal decided to forgo all interventions aside from comfort care (pain meds, sleeping aids, nausea meds, etc). This means that he’s no longer dealing with IVs for fluids and antibiotics, or blood thinner and insulin shots, or that awful NG tube. It also means that in addition to not being able to eat food, he’s limited to sipping clear liquids since he still has the intestinal blockage to contend with. But it’s truly amazing what a few less tubes, a shower, a shave and your own clothes can do for a guy. The same guy who was absolutely miserable 2 days ago in the hospital, is back to himself and looking great. He still tires easily and sleeps a lot, but other than that you would never know what’s going on inside if you just looked at the outside. A huge part of that is the fact that he is still not in any pain, so he doesn’t need to take pain meds like morphine that would make him more lethargic and incoherent.

Since he’s doing so well here I’ve been taking advantage and going home at night to sleep at the house. I’d either been sleeping in chairs or not sleeping at all for the entire week in the hospital, so having a nice hot shower and sleeping in my own bed was truly needed. The kids really need me to be home at night too whenever possible… especially Matthew who is really having a hard time being separated from his dad. I also wanted to give my father a break, so he could rest and recover from a fall last week resulting in bruised ribs (never a dull moment in our house). I’m sure I’ll be wanting to sleep over here eventually, but for now I’m trying to build up some strength again to deal with what lies ahead.

So for now we readjust to yet another “new normal”… A normal that like most of our past normals isn’t really normal at all. As I type right now, Neal is playing poker with some good friends in one of the common areas of the hospice house. The staff here didn’t know how to handle the request at first… I mean, who does that? Neal does, that’s who. He’s redefining hospice and going “all in” as they say in poker. That’s just how he rolls.

Thank you so much for the meals provided to sustain the boys during this difficult time and for being so understanding when I must play gate-keeper and manage the flow of visitors so that Neal doesn’t overdo it. And especially thank you for all the wonderful facebook comments sharing your good wishes and memories of Neal. He is absolutely loving reading them and discovering just how many people he has touched in his too-short life. It’s a gift that not many of us are given to be able to say goodbye in such a way, but I can’t think of anyone who deserves that gift more than Neal.

Until next time,

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