Surviving a hospital stay

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My adult brother with Aspergers is having surgery in a week and will need to spend a couple nights in the hospital afterward. He is dreading it. Any tips for him and/or me? Have you had any positive or negative surgery/hospital experiences?

The food is probably better than it was in the old days.

In many hospitals (at least in NYC), people can usually spend a long time visiting a patient---especially if the visitor is a family member.

He's going to be awakened frequently to draw blood, to take pills, etc. That's a pain in the butt.

The nurses in the overnight shift tend not to be as nice as those in other shifts (though there are exceptions).

It's possible he might spend some time in triage before he's given a room (especially in the big city).

Make sure he has a phone and charger, or tablet or charger, or even a laptop and charger. You can get decent TV in the room---but you have to pay for it. Make sure he has earphones.

He's probably going to be put on a special diet right before surgery, and right after it. Once he's allowed to eat "normal" food, it would give him great pleasure for you to get him a burger or something.

Been there, done that. There will be no making it easy with all the sensory hell (constant invasive touching, endless interruptions, to check on him, lighting etc) and just not feeling well from the surgery and medication.

I brought an IPAD and spent every moment not being interrupted or sleeping pursuing my interests. He should make sure there is stuff stored on his device in case the internet is sketchy. You can tell them in advance about his Aspergers/mild autism. Knowlege is increasing about ASD but don't assume they will know much. You have to fill in the details about his particular sensitivities. I have disclosed to medical personnel and usually it goes in one ear and out the other, they are focused on what health problem they are trying to solve but I did have a nurse with an Aspie brother so you never know.

It is important you be an advocate. Whatever social communication difficulties he has will be enhanced by all the stress but you somehow have to find a way to do that without infantilizing him.

I like to zone out with books or word puzzles.
The internet was very unreliable where I was so I wouldn’t rely on that.
The last time I stayed they let me sit out in the hospital garden for most of the day, so that was good too, although that might not be an option for everyone.

Porn (Reddit if porn is blocked). Decent food. Uncensored internet. Keyboard and frame! Very strong earmuffs.

The more time a relative can sit with him, to protect him from irrational staff actions, the better. It's not infrequent that a nurse will administer the wrong medicine, that he'll be pulled from his room for an imaging visit and remain in a hallway for two hours waiting, etc.

I get that hospitals are busy places with diverse challenges, so I'm not necessarily dumping on hospitals. But having an assertive special relative there to question everything is really helpful.

I had to spend a night in a hospital after I had a Vascular Malformation removed from my right leg. I was on some medicine which did help a little so my advice might be a little skewed. My first big one is take advantage of the TV find a show he likes so when he is alone he has something to focus on (for me I found a Star Trek Voyager marathon which defiantly helped calm me down once I realized I had a room mate), my second is bring a stim toy or a portable gaming system if he can't stand remaining still for long periods of time (I played Fire Emblem Echos: Shadows of Valentia whilst I was on the way to and from the hospital and when I was laid but what ever he does to keep occupied should help), and finally if he is afraid of needles be there for him when they put in the IV or any other things that may be done (my parents were there or I was out when they put most of the needles in my arm but I had a drainage tube in my leg and they took that out before my patents got back from the hotel and that wasn't fun for me).

Here's what worked for me:

First I notified the hospital about being an Aspie and asked them to try and arrange for a private room. This worked most of the times I had to go in. The times I did have to share a room with strangers was torturous, so for me this was the most important step.

What I brought with me:

- A noise-cancelling headset
- A tablet, smartphone or laptop (plus an extension cord!)
- Books
- Comfortable clothes and slippers
- Notepad and pen so I could write down any and all questions I had for staff. Doctors are not available to you 24/7, so when you finally find them at your bedside, it's best to get all your questions answered. Uncertainty + idleness + strange surroundings can lead you to ruminate on things. Leaving questions unanswered may end up haunting your brother.

Try to get an appointment with the resident dietician. They are able to change your brother's menu or add special items to his meals. If he can get the food he likes, it'll help him be more comfortable but he'll also get on his feet quicker.

While there it helped to keep reminding myself that I wasn't there by choice, that the hospital isn't supposed to be fun, and to always make an effort to be nice to the staff.

Good luck to your brother, you, and your family.