Take charge — when the patient can’t

Last week I mentioned in this space that my father had been in a hospital’s intensive care unit in August, while I was being kicked out of the fitness center at his country club when I went to see him. He lives in South Florida. Since then, many of you have asked how he is doing, and some have wanted to know if I expect to do jail time for trying to work out at the gym without a membership.

The answer to the second question is simple: You don’t do the crime if you can’t do the time. There will be no incarceration, though I may be forced to attend the county club’s Halloween party. It’s Friday, Oct. 29, from 5 to 9 p.m. This way the revelers can eat dinner beforehand, although the menu for the festivities does boast “corned bats and cobwebs,” which I believe is corned beef and cabbage. I think this was a wise menu choice: No Halloween party is complete without a lot of elderly people dressed as Vampirella and eating cabbage.

My father’s health is more complicated. He escaped the ICU for two weeks, actually getting as far as a rehabilitation facility, before returning. Once more he has gotten out of the ICU, though he has been hospitalized since Aug. 10. Happily, he may go home this weekend. He has no terminal illness: He’s just a gentle 82-year-old guy with a host of medical problems. But this week, rather like Rip Van Winkle, the fellow I know and love miraculously returned — 30 pounds lighter, but otherwise his old self. He has little memory of the last seven weeks. He just wants to wake up in his own bed. (And with that Halloween party beckoning, who can blame him? The poster also says there will be Fillet of Frankenstein, and I never miss a celebration with cadaver meat.)

I learned an enormous amount while he was hospitalized. Here, in all seriousness, are things to do when someone you love has more tubes and wires in them than an Airbus passenger jet.

1. Ask questions. Learn the names of the drugs and what they’re supposed to do. Then Google them and learn even more. Learn the likely side effects of any procedures and likely recovery times. Google those, too, always remembering to take that information back to discuss with your doctor. As Steven Grunberg, professor of medicine at the University of Vermont College of Medicine explains, “There is a lot of information on the Web, but there is a lot of misinformation as well. Use the Web as a starting point, not an end in itself.”

2. Don’t shy away from a second opinion. “There is no room for ego when a family member’s health is at stake,” says Marc Tischler, an associate professor of medicine at the University of Vermont College of Medicine and director of Noninvasive Cardiac Imaging at Fletcher Allen HealthCare.

3. Get names. Hospitals have different protocols, but my father seemed to have a different caseworker or ICU nurse every day. It made a huge difference when I could begin a conversation, “[Insert name here] told me yesterday …”

4. Know when the doctors are making their rounds and be there. If you can’t be there, schedule times when you can speak with them. Get the information from the physicians firsthand.

5. Be assertive. Make darn sure that the person you love isn’t in pain — and if he or she is, demand that something be done. Sometimes, morphine is our friend.

6. Learn how things will be different when you bring your family member home, especially when it comes to medicines. “Be absolutely sure you understand every new drug he or she is now on and the reasons that medications they were on prior to hospitalization have been stopped,” Tischler explains.

Finally, under no circumstances have a last name as impossible to pronounce and spell as mine is. At different times in my father’s stay, I called from Vermont and was told by nurses or caseworkers that my father was on a ventilator (he wasn’t), he just had major surgery (he hadn’t), and he had gone home (I wish). The issue? People were looking at another patient’s chart or simply confused my father with someone else.

With any luck, my father will be at that Halloween party — and I won’t. But I will keep you posted.

(This column originally ran in the Burlington Free Press on September 19, 23010.)

Chris Bohjalian

Chris Bohjalian is the author of nineteen books, including his forthcoming novel, The Sleepwalker. His other novels include the New York Times bestsellers Midwives, The Sandcastle Girls, The Guest Room, and The Double Bind.

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