A caregiver at the hospital

The thing about being a patient and caregiver when you are at the hospital is that you are at the mercy of the system. And timeslots and schedules are out of your hands There are all these independent specialists you need, but who are engaged in very busy private practices. So it puts you at their whim regarding time and schedule.

Ideally I would be able to drive the agenda and calendar. For example I would have Kaplan here at 6 today to discuss options and consequences and then schedule the shunt surgery at 1pm to allow me time to run home and work out and change. And have friends and family here. The neurosurgeon and general surgeon and anesthesiologist would accommodate our needs.

Yesterday, instead of having to be around from noon on waiting for the neurosurgeon I could have taken a break. But the caregiver cannot just leave or delegate to others. Because when they show unexpectedly, your knowledge and history end up being vital. Not just past medical history, but how Meagan is doing in the present. Literally a part of the team, albeit the junior member. The neurosurgeon asked me a ton of questions then hauled me into the visiting doc office and pulled up her scans and talked out loud while he thought about what to do. I would not have wanted to miss that in favor of getting some exercise. And it is also very clear that for something like Meagan's condition there are many divergent opinions, and being the functioning person at the center means you hear them all and are the only person able to sort it all through and make sure the primary doc, Kaplan, hears it all before his recommendation is developed. Yesterday I heard the stand-in oncologist say he didn't think chemo to the brain was worthwhile and why, but whole brain radiation was, the neurosurgeon dissed the radiation oncologist and said he wouldn't do whole brain radiation but would do chemo, and of course the radiation oncologist is hell bent for leather to do whole brain radiation. They at least all agree the shunt should be put in. I will be very glad when Kaplan shows up in a while, he gets to be the general contractor in charge.

All this to say, I am not trying to be here 24x7 and not accept help or relief. I'd love to have a regular schedule. I'd love to have a rotating cast of friends and family spell me, sit with Meagan, be with me. When we are in a recovery phase or stasis phase that might be possible. But in this phase, "high alert be ready for the important people when they show phase", it's just not possible. You get smarter the more experience you have so I should be able to manage it better than most. Today I was up at 4am, knowing I could get coffee downstairs before they close at 5am and regular facilities don't open until 6:30. I also know I am likely to see Kaplan around 5:45 to 7:00 so I'm ready and primed. Then once he's gone I know I'll have a window to get a break because they need her to not eat or drink several hours before the surgery, so even if I'm gone and they figure out they can get her in for surgery at 1pm, I can be back in time. I also know the surgery may not happen until Thursday. And we may not get notice until hours before. Oh well, having an accepting, zen-like attitude helps too.