Best practices for post-op family support?
September 16, 2012 12:47 PM   Subscribe

My husband will be having major surgery next week. As far as I can tell, I was born without normal sick-person-wrangling instincts. What helpful or comforting things should I be planning to do to support him through recovery, at the hospital and afterwards at home?

The surgery in question is a Big Deal-- non-elective, with a total ICU+ hospital stay of a week or more. His parents will be visiting, but as the spouse, I know I'm the primary support person here. Despite my XX genotype, though, I'm much more of an engineer/problem-solving type than I am an emoting/nurturing sort, and a lifetime of really good luck with my own health has left me a bit deficient, I think, in normal impulses of compassion toward unwell people. Any kind of concrete helpful labor is no problem, but the thought of extended Victorian-style sickroom watching-- sitting with someone for hours on end just smoothing his fevered brow and being a sunny loving presence and whatnot-- is frankly pretty horrifying.

Obvs., though, I love the guy, and I want this go as well as possible for him, so I'm committed to faking this 'til I make it, or until it's over. To do that, though, I'm going to need a detailed, very concrete plan as to what I'm responsible for at each stage. Which is where you come in, Metafilter. If you've supported someone through something like this, or been yourself well-supported, what did that entail-- how did the person act, what stuff did they do, how long did they stay, what was unexpectedly helpful or not-helpful, etc., etc.? Please walk me through the whole thing like I'm a 2-year-old or a Martian, because beyond "Log onto PubMed, read 1,000,000 abstracts about condition" or "Shuffle uncomfortably, jump at chance to go get takeout," I'm really going to have zero useful instincts to guide me here. Thanks!
posted by anonymous to Health & Fitness (21 answers total) 16 users marked this as a favorite
Random things that come to mind immediately:

1) Stock up on books and/or computer projects; things you can do in the room/bedside. You mainly just need to be present and available for odds and ends, and otherwise can do your own thing. It's the proximity that's important. Fretting and hovering is neither required nor helpful!

2) Don't ask him what he wants done. Having to make decisions can be exhausting, as odd as that may (or may not) sound to you. Don't ask whether he wants you to take out the garbage; just do that. Don't even ask what he wants to eat; just get something.

Without more details as to the illness/recovery, it's hard to be more specific. But this is likely to go a lot easier than you think, so don't stress too much.
posted by curious nu at 12:53 PM on September 16, 2012 [4 favorites]

Bring newspapers to the hospital for him to read (or for you to read to him), an iPod with his favorite music and/or audiobooks, play cards with him if he is able. Watch the news so you can keep him up to date on what is going on if he isn't able to stay current in hospital. Tidy his room in hospital - so much stuff builds up and gets all over the place it is enormously helpful for someone to just tidy things away neatly on a regular basis. It's also a-okay to take your Kindle/book to the hospital and just read, being there can be very soothing, even if you're not talking.

When he comes home, I think one of the most helpful things is to keep track of his medications for him. Keep a chart or something so everyone knows what he's had and when. Make sure you have lots of appropriate foods available (if he will be on a restricted diet, make sure you have more than just one flavor of pudding or whatever). Get him a water bottle and keep it full if he is going to be mobility-restricted for a while. Have his favorite shows or movies available for him to watch. Make sure you keep up with things like cleaning, garbage, whatever.
posted by biscotti at 12:55 PM on September 16, 2012 [1 favorite]

Talk to him about it beforehand, too - some people want attention and cossetting when they're feeling unwell, and some people want to be left strictly alone. It will go much better if you can discuss his expectations beforehand rather than trying to guess when he's not at his sharpest.
posted by restless_nomad at 12:59 PM on September 16, 2012 [5 favorites]

the thought of extended Victorian-style sickroom watching-- sitting with someone for hours on end just smoothing his fevered brow and being a sunny loving presence and whatnot-- is frankly pretty horrifying.

Yeah agree with curious nu, talk in advance about what sorts of things he might want [you there regularly? you there all the time? you keeping other people OUT of there?] and then when he is in teh hostpital recovering and probably in pain and tired and cranky you can just handle things.

When my mom was in the hospital after surgery with a long recovery time, one of the things she wanted was for us, my sister and I, to be the go-betweens with all the well-wishers who wanted to know how she was doing, and her limited energies. We set up an email list for updates and would be the go-between for messages and offers of help. We had some pre-set up things that people could do if they wanted to help [take in the mail, make some freezer foods for us, send a card] as well as things to not do [please don't send flowers or clothing or magazines] and we just handled it. Mail came in, pets were fed, people were updated, and we paid attention to keeping ourselves well-rested and fed so that we did not become our own liabilities with stress and/or anxiety of our own.

As much as there is no real way to do this sort of thing right, there are a lot of ways to sort of make it less great and so I'd focus more on being responsive but otherwise....

- not making it all about you (you are not doing this now, jsut saying it's a common failure mode) and your own concerns and anxieties about your ill loved one
- not being a bit of a gatekeeper with information and/or people and/or stuff. You are in charge you can stick cards in a drawer, bring things to/from home, decide not to pass on every message, etc. This is especially helpful with people who want to visit. You can be the mediator for this, you do not need to pass this on to your loved one (after having a conversation about what they would want)
- staying engaged with what is going on but also being able to check out at will. You may decide you're going to be there in the mornings and then he has some sort of appointment or therapy or whatever and suddenly you have a free hour. have a book or knitting or an ipad and learn to sort of check out and back in again when you are needed.

There is a lot of waiting and a lot of boredom punctuated by occasional medical interventions and/orvisitors. Sometimes just sitting together watching the news and/or listening to music is all the together time that is really needed and not too difficult to manage. I wish you and your spouse the best of luck.
posted by jessamyn at 1:03 PM on September 16, 2012 [1 favorite]

This is timely for me, my mother just left town after helping me recover from a surgery.

Do your best not to get frustrated with him for seeming needy or irritable - being in pain can make wheedling toddlers of us all. Just roll with it, and show him by your behavior that you're not judging him for this temporary and very unpleasant state he is in. In the past week, I have snapped at my mother for, among other things, eatin crackers too loudly.
posted by jennyjenny at 1:06 PM on September 16, 2012 [3 favorites]

Has your husband ever had a cold? The flu? Thrown out his back? Is he the kind of guy who just wants you to make him an occasional cup of tea and then leave him alone in his kleenex-ridden misery, or does he want you to fluff up his pillows every three minutes and for you to hang around making "poor baby!" noises? You probably already know the answers to some of your questions, since you know your husband and we don't. Definitely ask him if there are particular books/movies/foods that he wants to have in stock when he comes home.

I took care of my mom while she was dying of cancer. Mostly what she wanted was something interesting on TV and/or a good book to read and/or good music to nap to. I did the cooking and kept things fairly neat and uncluttered. If all she felt like eating that day was ice cream, then I went out and got ice cream.

Talk to the surgeon (or their staff) about specific aftercare instructions, and nurses can give you advice on best practices for helping him bathe and so on. You may need to buy or rent some stuff for home (like a shower chair), so find out now. When you're at the hospital, bring a notebook and a couple of pens, because you're going to have questions and there's going to be a lot of information exchanged that you won't remember the details of unless you write it down.

Nurturing is also a form of problem-solving (and vice-versa). They're not dichotomous.
posted by rtha at 1:07 PM on September 16, 2012 [4 favorites]

Be mindful of the hospitals routines when visiting. Don't show up just before they serve meals, for instance. Try and get there when the doctor makes rounds so you're not waiting a couple of hours for them to track the doctor down.

My husband couldn't tolerate long visits when he came out of surgery, and he was weak from not being able to eat for several days (colon cancer re-section). All he wanted was to hit the pain pump every 20 minutes. Long visits can be tiring, so I would visit, if the nurses have to do something, hit the cafeteria, then go back for another short visit.

At home, mainly he wanted to sleep, and I had to help him in and out of bed the first few days until his incision healed. The hospital will give you detail discharge instructions, mainly related to activity level and what to look for in terms of incision problems (infection, stitches pulled, etc.).

Also: no flowers in ICU so tell people to hold off on any of that stuff until he's in a regular room. Just go in, say "how are you feeling? Can I get you anything?" And maybe sit and watch something relaxing on TV with him.

Good luck!
posted by Marie Mon Dieu at 1:17 PM on September 16, 2012 [1 favorite]

Talk to the nurses (move with them as necessary--he's not their only patient, but he's your only patient), ask them what, if anything needs tracking (such as his intake/output, complaints, meds, sleep activity), what's off-limits (liquids only, nil-by-mouth, no red meat), what might be danger signs, where he's gonna hurt the most and how you can help remedy that when they're busy. Take notes! Post-hospital care is also going to be substantial amount of info. Oh, Marie
Mon Dieu-- good one about the flowers in ICU. Find out if there are any other such restrictions from the well-meaning.

They are the primary caregiver, so catching all this is their job, but you can help and it'll give you something to do.

And of course you'll want to get the wi-fi key.

Also, don't count your instincts out-- instincts need the real-thing to trigger; unless you've gone through this before, what you probably lack is experience. And that's okay-- that's why you get instincts.

You're also going to be held responsible by others to keep them apprised of his condition. Keep numbers handy, keep track of who's been called. You get to decide who gets told what; you may get some social blowback later for not satisfying his parents with every detail, for example, but you are the gatekeeper, and your decision is what goes. You manage the visitors, too.

P.S. It's nice to gift the nurses when possible. Order some pizzas, maybe, or a round of sandwiches (nurses can advise you on this, heh). Definitely a thank-you card after discharge, for the help they gave you in addition to your husband, which will probably be substantial for each of you. Best of luck to you.
posted by Sunburnt at 1:20 PM on September 16, 2012 [1 favorite]

It's important that you be there when he wakes up after surgery, or when he is moved from recovery to ICU and you can see him again. In ICU there's not a lot you can do for him and he may be so drugged anyway. If you need a plan, plan to be there during some of each visiting hours (split this time with his parents, you can't all be there at once) and read to him from the day's paper. Learn his pain management schedule and make sure it's adhered to. Ask a nurse to brief you on what's gone on each day.

When he's out of ICU, meet the new nurses and repeat. Find out about food and when he can get non-hospital food brought in. (This is a Big Deal.) Read him his Facebook page or email messages or whatever; good wishes are nice. Running his FB page for him is a good plan for the interim.

Sleep masks, ear plugs and socks can make his stay more comfortable.

Will your husband have to hit pre-discharge milestones? It would be helpful to know what kind of surgery. At home, bathing may be a big deal. Toileting may be a big deal. Rehab may be a big deal. We can give you more precise advice with more precise information, is all.
posted by DarlingBri at 1:36 PM on September 16, 2012 [2 favorites]

Like others have said it is hard to give you advice without knowing the illness. I'm assuming he'll have a period of recovery at home. That's when it gets hard. So I'll reiterate things others have said and add thoughts of my own:

1. Buy a multi-week pill case and figure out his medication schedule on your own, in consultation with the nurses or doctors before he comes home.

2. Read up on each medication and their interactions so you'll know what to do in case of a reaction, if he forgets to take one, or if he forgets whether he took one.

3. Make two lists of phone numbers: one for you and one for him. These should include pharmacists, doctors, parents, etc. Make sure he has it on him at all times.

4. At home, keep a pitcher of water by him at all times and make sure he drinks from it regularly.

5. Don't expect him to provide emotional support to you during this time. Turn to your friends or family.

6. Focus on the present and the near future in your conversations with your husband and his family. That can make the time go by faster and reduce tension.

7. Don't expect anyone to recognize that you're doing so much work, including him. You do it because you care and because it is the right thing to do.

Related to my last point and I don't mean this as a criticism, but there's something in your post that makes me think you're going to have a hard time. Taking care of a sick person is hard and thankless work: You have to remember a lot of things that are vitally important but no one is going to acknowledge that you are carrying an extra burden. Your husband might not even realize how much you're doing.

In my experience the lack of recognition is not a matter of gender. It's the way illness affects the patient. As a feminist woman I do not feel like your caricature of nursing sick people reflects the challenges I faced when I took care of my terminally ill boyfriend. There was a lot of work and it was sad but mainly it was a lot of work.

Think about what's ahead as work composed of discrete tasks and remember that is not about you.
posted by vincele at 1:55 PM on September 16, 2012 [5 favorites]

You may be able to contact the doctor and ask what to expect in terms of what he'll be able to eat and feel like doing, and then extrapolate (stock up on comfort food that can be heated up, lay in mindless DVDs, prepare to amuse yourself while he sleeps but not leave the house, etc.). Be prepared for poor communication about discharge instructions and the first day or two in terms of medications and what to watch for -- I've had it happen with me and the two people I've helped take care of. It's really nerve-wracking.
posted by wintersweet at 1:55 PM on September 16, 2012

Jennyjenny makes the point I was going to regarding trying not to get frustrated and to remember the patient's behavior may not seem rational to you, based on how much pain they are in, how the surgical anesthesia affects them postop, the medications they are on, etc.

For instance, when my mom was in the hospital recently after colon surgery, she complained of being cold and wanted to be covered up a certain way -- sheet, then 2 hospital blankets, on top of that 2 fuzzy throws we had brought from home, all wrapped around her feet and tucked in all around her body so that no air could get under the covers (it makes me sweat just typing it all out). Invariably, as soon as all the covers would get situated and I would sit back down, she would throw the covers off to sit on the side of the bed for 5 minutes, and then it had to be done all over again when she decided to lay back down. She wasn't purposely being hard to get along with or needy at all, she was just restless, drugged, uncomfortable, and didn't really know what she wanted. Be prepared for some of that.
posted by SweetTeaAndABiscuit at 2:10 PM on September 16, 2012 [4 favorites]

Being present at the hospital is the easy part. You'll have nurses to do the care/treatment, and make sure he's getting his meds, and is able to get up, change hospital gowns, pee etc. Watch what they do, and make note of their tactics, if there's going to be an at home care portion of the recovery, ask the nurses tons of questions. Beyond that, you can always bring a lap top + dvds of some tv show you've been interested in watching but never got around to. Or bring a newspaper and read the news/talk about current events. If you have a special interest in common, read some blogs ahead of time and tell him all about this interesting thing you just read on the internet.

For comfort, you may be able to bring in an outside blanket or pillow for his bed, it'll make it feel more like home, and adds an element of continuity in a super sterile environment. If you know what department he'll be recovering in, call the hospital and ask to speak with the charge nurse ahead of time to find out what you can and can't bring in.

At home: you'll be taking over the nursing duties, which means, if you're anything like me, you'll probably have to bite your tongue every five minutes. It's an exercise in calm, and patience, and it's hard to hold it all in. Make sure that you have a friend on speed dial, whom you can vent to. Just try to understand that whatever needs your husband has are going to be new to him too, he's not asking for that extra blanket, or for his pillows to be arranged just so to annoy you, and he may be confused, or unable to express just what his needs are.

If he's stubborn, or doesn't want to be too needy, you may need to ask an exhaustive list of questions to figure out what's needed. Merely asking, "are you thirsty?" may not get you the same result as just bringing a cup of juice or water. Similarly, if he has any special foods that he loves (smoothies, thai, whatever) going out to pick them up, or asking a friend to bring them, can add an extra boost of joy to the day.

Just remember to be patient with yourself, first, and him, second. You're both encountering a new situation, and you can't expect perfection. Just try to be understanding of yourself, and make sure that you have space to vent, or relax, too. Caregiving is hard, but it's also super rewarding.
posted by nerdcore at 2:38 PM on September 16, 2012 [1 favorite]

Get a notebook. Take detailed notes. eg: 9/16, 3pm, Dr So-and-So examined him and said "...". Ask questions, write down the answers. Think of it like taking notes at school, with the doctors and nurses as lecturers.
posted by crazycanuck at 3:04 PM on September 16, 2012 [1 favorite]

The most important thing you can do is to make sure the hospital doesn't fuck up. If you're truly an "engineer/problem-solving type," then you need to become familiar with the standards of care for his procedure and his illness. My wife and I have both undergone major surgeries, and each time we had to prevent the hospital from endangering us. Make sure the bandage-changers have clean hands. Monitor the meds so he doesn't get an overdose of Tylenol (acetaminophen is often combined with opiates). If he's on a special diet, make sure the hospital doesn't feed him something that's off the list.

His hospital stay will be the most dangerous time. Once he's home, you can breathe a sigh of relief and then work on comfort care. Cook his favorite meals. Make sure he's comfy in bed or on the couch. Get a bell or a simple walkie-talkie so he can attract your attention without having to yell.

Most of all, develop your campassion. Recovering from surgery is far worse for him than it is for you. He will be in pain, unable to move freely, and most likely embarrassed that he's burdening you. You need to step up and make this about him, not you.

I wish you both the best. Surgery sucks.
posted by Johnny Wallflower at 3:48 PM on September 16, 2012 [2 favorites]

Lots of good advice above.

The mister's heart issues have had us in hospitals many times over the last two years. He hasn't had any over-nighters, but most days were at least eight hours and sometimes ten or twelve hours long.

Bring something to keep you occupied: book, laptop, knitting, whatever it is, maybe several things. If your husband will be awake enough to want things to do (read, etc.), make sure he has that.

If your husband is allowed stuff to drink/eat, keep him supplied. If he's hesitant about what he wants, tell him you'll choose (something he likes).

You do NOT need to clutch his hand or mop his brow.

Take breaks - go to the cafeteria, take a walk outside, etc.

For a lot of it, you'll just have to follow his lead.

Tell him you love him.
posted by deborah at 3:48 PM on September 16, 2012

Not to stereotype all men, but in my limited experience (my husband and my Dad) they tend to turn into baby boys when they get sick. No matter how independent they normally are, once they're relegated to bed they require the attention of three saints on eight-hour shifts. On and off over the years I was witness to my Dad being hospitalized several times and each time would whine and complain if one or more family members weren't by his bedside during all allotted visiting hours. Mind you, this is the same man who, when Mom was hospitalized just twice in recent memory, had one of us adult kids drive him for a one-hour visit (about which he griped beforehand..."I hate hospitals", etc) and then we'd take him to dinner at his favorite greasy spoon, which sometimes seemed like his main motivation for visiting Mom.

Mr. Adams has only had one major medical procedure since we've been together (I'm not counting the times he's run a slight fever and asked me to fetch him everything from juice to a thermometer to the address for the producers of Grey's Anatomy, insisting his illness would make for a great two-part episode) -he had to have major oral surgery which required me to change his bloody mouth gauze many times, something I'd never imagined doing for another human. But that's what you do when an SO is ill - whatever is necessary, whether it's changing gauze or adult diapers or doing a crossword puzzle with him or just sitting and watching TV with him so that he's not alone. The keyword seems to be companionship - just be there, and occasionally ask "Can I get you anything (and then be specific) - juice? Pop? Water?" or "XX is on TV do you want to watch that with me?" or "If you're tired, go ahead an rest, I'll be right here if you need anything."
posted by Oriole Adams at 3:53 PM on September 16, 2012 [2 favorites]

I just had a nine day unexpected hospital stay that included major surgery. I wanted my husband OUT of the hospital. I sent him home every night and regularly during the day. I was sick, uncomfortable, in pain and dealing with embarrassing bodily functions. I rested better when I was alone, and the nurses were the ones I wanted if I needed meds or had questions. It was critical that I see him everyday--but I didn't need to see him ALL day.

Point being, people are different. What kind of comforting does your husband want?
posted by peanut_mcgillicuty at 4:22 PM on September 16, 2012 [2 favorites]

Seconding that I basically wanted a thinking grabber arm (I have dropped my pillow, please get it for me.) and didn't really want to... talk or hang out or interact in any other way. My basic pain mode is to alternate sleep and mindless phone games in approximately four hour increments. (I do like having someone there, though, because I usually don't feel comfortable pushing the omg-nurse-now button because my left knee itches and I can't reach it, or whatever.) So yeah, bring a book, and bring plenty of warm clothes because you will get cold.

If he wants to move and needs your assistance, I've found that generally the best way is for you to brace yourself and then hold completely still so that he can use you as a hand-hold to climb on--don't attempt to actively pull or push unless he asks you to.
posted by anaelith at 4:40 PM on September 16, 2012 [1 favorite]

I'm very much like you about this stuff, for much the same reasons, and when my husband was unexpectedly in the hospital, I think I ended up annoying him a bit when I was there too much or when I was there and tried to help with things and ended up being unable to. That was frustrating for both of us.

The most important times to be there seem to be when the nurses and doctors are stopping by—that way they get to know you and know that you care what's going on with him, they can tell you any updated info about his condition or medication that he might be too sedated to recall, you can ask them to redirect the fan/turn up the AC/get him a new vomit pan/close the curtains, etc. So when you're there, be mindful of attending to those sorts of things, but otherwise, unless he feels up to talking, I'd hang out with a book, a sweatshirt, and a bottle of water for yourself and just be there.

Other things: See if he wants anything (within restrictions that the doctors may have him on) and bring them to him. Bring him his smartphone, charger, and headphones, so he can play games, watch things, read things without disturbing his roommate (which he'll probably have). I would not suggest bringing him extra water or food unless you've discussed it with his nurses/doctors; they may have certain restrictions on that or a certain progression of liquids to solids he's supposed to be following, and they may also be monitoring fluids/food intake/output.
posted by limeonaire at 4:48 PM on September 16, 2012

Just chiming in to say that I second CrazyCanuck's suggestion of a notebook. One for you, one for your husband. Write everything down with time and name of the person who spoke to you. If you don't understand something, or need more time to write it down, tell the health care professional: "Wait just one second, I want to get this down and then double check it with you." Make them stay until all your questions are answered. Ask questions. Ask the charge nurse or the MD when is the best time for you to get questions answered, and make sure you're there for that. If you can't be there, ask for a phone call. Get daily updates.

Use what you know about your husband to make an educated guess about what he might want or need. You can even ask him about this explicitly (although it might be hard for some people to know what they need until they are in it.) Keep in mind that during his hospital stay he will be having vital readings taken every four hours or so and varying levels of drugs in his system. His days will start early and his nights won't be very restful. Depending on the kind of surgery he's having and how he's feeling, your offers of comfort might change. E.g., if he's having brain surgery the process of recovery might preclude bringing him a paper to read for a few days because reading might be too stressful, but if he's having back surgery then guessing that he might want to read the might mean you bring that to the hospital every day, even if he didn't ask for it. If he likes a particular food, you can ask the hospital if you can bring it in (but please, ASK first.) It may be that he would like you there as soon as you can be in the morning, but wouldn't mind if you went home in the afternoon. Or it might be vice versa. Ask him. And then do it. And if he makes an unreasonable request (e.g. massage his feet even though he knows you hate feet) do it anyway.

I suppose, in short: plan ahead, be flexible, and listen to the verbal and non-verbal communication he will be providing you during his recovery. Don't take it personally if he snaps at you or appears unreasonable (see previous comments). Ask him what he needs, and then provide it to him (or essentially: if you say you're gonna do it, do it.)

You are both going to be okay. If 'nurturing' doesn't come easy to you, think of this as a very subtle problem-solving puzzle with lots of margin for error. Good luck to you both.
On preview: limeonaire's suggestion of electronics is a good one if they are allowed on his unit (some devices might interfere with medical equipment, so ask first), but take it home with you afterwards. You don't want it to be stolen. Have him keep jewelry/watches/ wallets at home too. He won't need them in the hospital anyway.

posted by absquatulate at 4:53 PM on September 16, 2012 [3 favorites]

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