Hospital Tips, and More

Some survival notes from my current life

[Follow up post here. Some good additional suggestions from an ICU doc.]

My last few weeks have been occupied by my Mom’s health problems. We moved her into assisted living a couple of weeks before Thanksgiving, it went quite well until she had a fall the Tuesday before Thanksgiving. (Past a certain age you don’t “fall,” you “have a fall.”) She cracked a femur. Fortunately my daughter, visiting for Thanksgiving week, was spending the night with her and rode with her in the ambulance to the ER, doing a great job of taking care of everything until Helen and I got there. They did bone repair surgery on the femur, and moved her into post-surgery rehab after that. But now she’s back in the hospital with seizures or fainting spells, or something — they’re still running things down.

But this isn’t about her condition. These are some suggestions based on my experience with numerous patients in numerous hospitals, etc., over many years. I hope you don’t need them, but if you live a long life, or have relatives who do, you probably will. I hope you find them useful.

1. Have a go-bag. No, not a “bug out” bag, but a “hospital bag.” Mine is an old backpack. In it are a laptop with charger (and phone charger, very important), a bunch of snacks, a change of clothes (including something warm because hospitals are usually freezing) an old airline blanket (same reason) and, when I leave the house, my Kindle. There’s a lot of boring down time at hospitals and you have to look after that. I usually stick a couple of bottled waters in the side pockets as water fountains are sometimes hard to come by for some reason. Keep restocking this over time as you go back; you never know when you’ll be there overnight.

2. Following up on the above, an important lesson: Prioritize taking care of yourself. Your patient has a whole hospital devoted to taking care of them (though it will need your supervision — more on that below), but they need you to be functional. You need to keep yourself fed, watered, reasonably rested, and generally together. The modern medical system is too complex, and often disorganized, for a sick person to deal with. They need you to be sufficiently on your game to talk to doctors, nurses, etc. Don’t punish yourself in some sort of solidarity move — it doesn’t help anyone if you’re sick too.

3. Track what they do. I make a point of knowing all the meds that are being administered and the schedule when I’m there. When nurses come into administer them, I ask them exactly what they’re administering. (I have a good memory for this stuff, but it’s not a bad idea to take notes). If something new appears in the mix, ask about it — who prescribed it and why. If they don’t administer something on the list, also ask why. In my experience, they make mistakes. You may also be able to get them to back off on checking vitals multiple times in the middle of the night so that your patient can get some sleep. (And so that you can!)

4. Get to know them. I always introduce myself politely at the nursing station, tell them who I’m with and what my relationship is, and make a point of remembering the names of the nurses and CNAs. They seem to like that, and will often go out of their way to be helpful. (This approach works well pretty much everywhere, not just in hospitals.) The same for the physicians.

5. Know something about what your patient is there for and what the likely treatments are. You can get this from the doctors, and it’s not a bad idea to back that up with a bit of AI research. AIs are pretty good at this stuff and you’ll have a better idea what’s going on. If you sound informed, doctors will talk to you more. (When doctors first meet you, you can usually see them sizing you up and deciding what level of explanation/discussion/deference to give you.) Again, be friendly and try to ask intelligent questions.

6. It’s basically impossible to learn your way around a large hospital — they’re rabbit warrens. But learn your way around the floor. And learn which entrances/exits close at night, and how to get to where you parked when they do. I neglected to do that the other night, had to retrace my steps quite a bit within the hospital, then exit and go around the block (it’s a big block) to the garage, at like 1 am on a chilly night. Don’t do what I did. For that matter, scope out your parking options. If you’re lucky, it’s a suburban place with a big lot. Or maybe there’s valet. If not, you’ll be trying to remember which level you parked on in which multilevel garage. (Take a picture with your phone so you don’t have to remember when you’re worn out and barely thinking straight.)

7. Get as much support from family and friends as you can. It’s exhausting to be visiting all the time, and you have other responsibilities. My ex-stepmother (my late father’s second wife who he divorced about 20 years ago; my mom was the first) has visited my mom for several hours on several occasions. They always laugh it up as they get along very well (they call themselves “the ex-wives’ club”), which is good for my mom and which gives everyone else a break. We’ve also had nieces and nephews, her various children, Helen, etc. visiting her. She appreciates that. And it makes it possible for everyone to get to their jobs, get some rest, etc. Of course, that’s a blessing you get with a reasonably big family. (My mom’s friends don’t visit because she’s basically outlived them all).

8. Realize that your role is important. It’s not just a matter of holding the patient’s hand, providing conversation and reassurance, although that is important too. One hospital Helen stayed in had the honesty to tell people that if they couldn’t get someone to sit with them they needed to hire someone. The health system doesn’t work very well for sick people — it needs a healthy person as the interface.

9. Finally, remember that unless it’s a quickie visit, this sort of health crisis is a process, not an event. You have to pace yourself for it because (to shift metaphors) it’s a marathon, not a sprint. You’ll be going back tomorrow, and probably into next week, if not longer.

Also remember that the doctors you deal with are constrained. When I didn’t want them to move her to the rehab facility in the middle of the night, I told the doctor I thought that given her weakness and disorientation (partly from anesthesia, partly from dementia) moving her in the middle of the night would traumatize. I could see in his eyes that I had just told him something that checked a box and let him keep her until morning. Think about what specific words or phrases might do that for you — often a doctor or a nurse will give you a little informal guidance, with leading questions, to get you there. They all answer to committees and flow charts and insurance guidance. I don’t like that, and neither do they for the most part, but that’s how it works and you’ll get more for your patient by working with the system than by denouncing it, even if the staff agrees with you.

Well, there you go. I hope none of you ever needs this advice, but most of you probably will. I hope this helps some.