Monday, July 26, 2010

Lessons Learned between Home and Hospital

Advice to those who suddenly have a person in the ER

Turns out that the moment you walk into the ER with chest pressure, pain, or discomfort, you are sucked into a vortex that does not, even under the best of circumstances, spit you out for hours and days. I think that's because no one who needs to buy liability insurance wants to let you out the door if there's any chance you'll die because they didn't do some test.

As luck would have it, I wasn't the one being tested. I did all the other things, like medications, clothes, cats, updates, and trying not to panic.

And I learned a few things. Here's my advice to those in the non-professional caretaker position, about what to do when someone you love goes into the ER and you are left holding all the other bags.

  • Slow down. Yes, I know, it seems urgent, and it might well be, but unless you're training regularly to do this urgent thing and do it fast, whether driving, answering questions, or gathering clothes, you are not good at it, and it will take longer if you rush. And if you make a mistake, the costs are high; your person doesn't need you crashing the car, tripping and breaking something, or leaving the stove on because you're dropping bits. Slow down, even more. If you get there a few minutes later, it won't make as much difference as having fed the poor cat, made sure you've got all your stuff, and not crashing the car. Slow. Down. More.

    I was about to leave the house. I made myself stop, take a deep breath, and look around. What did I have with me? What did I need? Everything was suddenly more complicated than I was used to.

  • Take care of the care-taker. That's you. Sleep, eat, cry, call friends, get hugs. It does your person no good to watch you deteriorate with stress while they're stuck in the hospital. You're ready to fight for your person, right? Fight for yourself first. Notice when you feel guilty for not being the sick one or for enjoying something, and fight that, too. Eating, sleeping, resting, working out, wearing clean clothes -- whatever sustains you -- is essential. It's not about fun, it's about oxygen. Don't drown while trying to rescue someone else.

    While my person was taking a test to determine if he would be allowed to leave the hospital, I went swimming at the gym. To do that, I put off friends and was late to the hospital. But the test ended up being late, too, and I was calmer after the workout.

  • Have a kit. You'll be tossing stuff into bags, like changes of clothes and books and suchlike for your person. But also have a bag just for you, which should contain your book, paper, pens, phone, keys, a thermos of your favorite tea, more snacks than you think you need, and so on. I used a backpack and reserved the front pocket for my keys, phone, the contact info for the nurse, and the address where I was going next, so I always knew where my most critical stuff was located.

  • Take notes. Write down everything doctors and nurses tell you-- possible causes, room numbers, test names, medications, names and locations. Date the pages. Use lots of paper. Most of it won't be useful, but what is useful is very useful. Also, it gives you something to do when you're in the hospital, which is a strange place where you will often feel out of place. Don't fall for that--you're critically important for your person, and taking notes and asking questions is a big part of your job. Speaking of asking questions, ask questions. Nurses and doctors are trained to get you to comply and to get out of the way. Be cooperative, of course, but (politely) get all questions answered.

  • Be prepared to wait. One of the most draining parts of this process is waiting when you're revved up for a crisis. You switch into high gear for the initial emergency, and then you sit at the hospital for hours, days, or weeks, waiting. How can you be prepared? Bring a book, a pad and pen, your laptop or phone, but most of all, adjust your expectations: you will not get the stuff done you usually do, even if you bring it with you, because you're hyped and everything is strange. Other good things to do: walk around, stretch, breathe, call a friend. Wait outside, wait inside. Tour the hospital. Move.

  • Use social media. I chose twitter as my way of keeping friends and family in the loop. Sure, some of them won't follow it and then you'll need to use the phone, but you'll save yourself a lot of repetition and urgent calls from people when you don't have time by pointing everyone at the same twitter feed or facebook page for updates. If you're not sure how to use it, have one of your friends who is offering to help to be your interface. Once people find out, they'll want to know what's up, again and again, and not always when you have time to talk.

  • Accept help. When a friend or family member offers to accompany you, say yes. Moral support and another set of eyes to help you remember things that you will absolutely forget is a really good idea. But you might not get that help, or might not get it right away. If you don't have that help, it's even more important to take every step slowly, to ask questions as often as you need to, to review your notes, to think about what to bring a third time.

  • Plan for exhaustion. When the end is in sight, carve out some real time -- hours, days -- to sleep and be useless. When the end hits, even if it's the best possible outcome, you are likely to be far more exhausted than you realize while you're hyped and ready to do whatever it takes to get your person through the crisis. Yes, you might need to call in sick after taking time off for this crisis. It's easy to underestimate how much this can take out of you. Plan for it and you might need less of it. Tough it out and you might need more.

This is hard work, having a person in the hospital. You can tell yourself that others have it far worse, that at least your person is still breathing, that we are all lucky to have medical care-- and all that might be true, but this is still hard work. Just because you're not the one running around in scrubs or the one lying there in the bed doesn't mean you aren't doing real, hard work. You are.


  1. Wise advice. As a former medical professional I completely endorse this as a recommended course of action. As a family member of someone who is frequently in the hospital I would further add that it's vitally important to make your presence felt to the hospital staff. Cultivate relationships with the nurses, the radiology techs, the cleaning staff. Anyone who has a role in the care of your loved one will remember that you took the time to treat them like a person. Like it or not, this will influence the quality of care and attention that your person receives.

  2. That's really good advice. Thanks for saying so, and sharing your experience. I hope to never need your good advice (again) but I'll remember it.

  3. Eek! Everything okay for your person now?

  4. My person seems well. I poke him in the chest and he says "hey, stop that." The doctor has pronounced him probabilistically okay, which, when it comes to cardiac issues, is the best you get. "We haven't found a problem yet, so we can keep doing tests, or we can assume, for the sake of argument, and pending evidence to the contrary, that you are not experiencing a cardiac event at this time, with the understanding that this assumption is merely the lack of negative results and not an accumulation of positive ones." Okay, I made that up. But it's close.