We didn't know it would be this bad. Really.
March 2, 2012 9:42 AM   Subscribe

My husband had surgery recently and we are struggling with his home care. Please share your post-surgical pain management and caregiver experiences.

Husband had spinal surgery two weeks ago. He is currently on oxycodone for pain, hydroxyzine (an antihistamine) for itching from the pain medication, and Valium (as a muscle relaxant). He also takes Tylenol for pain, because he can't take NSAIDs due to stomach issues. He's had laparoscopic surgery before, but this is at such a completely different level in terms of pain and recovery, so I don't know if what is happening is normal.

After two weeks, his pain seems to be about the same as it was the day he came home. He is very spacey, disconnected, and sleepy all of the time. He's extremely forgetful to the point of not taking his medication when he's supposed to, then ends up writhing in pain. Last night when I had to go out for a few hours, he failed to take the meds I left out for him, opting instead to drink a bunch of alcohol. While he was drunk, he made some comments about wanting to die because the pain was so bad. There are weapons in the house, so this scared me quite alot, as did the mixing alcohol with his pain meds. I ended up staying up for hours to make sure he kept breathing all night. Then he couldn't really explain why he did it. Another time I found him holding the cat, who weighs more than the 10-pound weight limit he's under, and again he couldn't explain why he had done it. There are other examples - but basically, unless I am watching him like a hawk he keeps making very impulsive decisions that could ultimately hurt him. I feel like I am taking care of a child.

We had a followup with the surgeon earlier in the week and he told us at that time that we should expect another 3 or 4 weeks of this. After last night I am afraid to leave him alone for more than an hour or two, and that I can't trust him to take his meds on time or to not drink. The thing is, I have to go to work, unless I take PTO to take care of him.

TL;DR, my questions:

1. Is it normal for him to be so spacey and forgetful on oxycodone, hydroxyzine and valium, and yet still complaining of pain? Is it a sign that we need to change his meds?
2. As his caregiver, is it normal that I have to remind him constantly to take his meds, to eat, and to keep him from doing stupid shit like picking up heavy things? Should I be staying home fulltime to do this? Is it normal that he is unable to keep track of these things himself?
3. What should I do about the drinking/potential for self-harm? Is it overkill for me to empty the liquor cabinet and remove the weapons from the house? It seems like the logical choice but I would like to know if I am being overly dramatic about this.
posted by fanta_orange to Health & Fitness (20 answers total) 2 users marked this as a favorite
I can't answer with respect to the other questions but the answer to number 3 seems clear - remove the liquor and weapons from the house for the time being. Who cares if it turns out you were being overly dramatic? I'd rather be teased later for being a silly drama queen than take even an infinitesimal chance of something horrible happening and knowing that it could have possibly been prevented.

Besides, it sounds like you have a ton on your plate right now. If removing these items from your home allows you to relax even a tiny bit, it's probably worth it.
posted by wuzandfuzz at 9:50 AM on March 2, 2012 [3 favorites]

I can only answer #2 and 3, but -- yes, it sounds like it.

It is hard to just take away another adult's agency -- I struggled with that with my (totally lucid, but not rational, and like your husband really ready for it all to end) mom. But that's part of caring for someone in their "desperate helplessness". If you can take PTO, it seems like you really need to, if you cannot -- the insurance company needs to (and they will) pony up for a home-health nurse.
posted by pH Indicating Socks at 9:51 AM on March 2, 2012 [1 favorite]

I have had spinal fusion surgery. I am not a doctor. I was not at that level of pain for more than a week. 3 or 4 more weeks of level 10 pain sounds like there is an issue to me but I do not know what kind of surgery your husband had. As for the meds, if those are not working, he would have to go up to the next level which in my layman's mind is morphine. After a week or two of taking what he is taking, he should not be spaced out. Because of continuing pain in my neck from a herniated disk, I will occasionally take a Vicodin and while I won't drive, I do go about my life without difficulty from the meds.

Dump the beer or lock up the booze.

On preview of my own answer, I add that 6 weeks after my surgery, I took a 12 hour flight with little to no pain. HMMV, but this will pass.
posted by AugustWest at 9:52 AM on March 2, 2012

1) Everyone is different in regards to spaciness. Some people take it in stride. Some don't. I had to take vicodin when I just had my wisdom teeth removed and was starting another medication at the same time. I wasn't on any sort of heavy dosage and was pretty much non functional for as many weeks as I was on the vicodin. And this was just for pulling 2 wisdom teeth. (and I was still in a bit of constant pain) Everyone will react to meds very differently.

2) This might be parts of his normal stubbornness given a bit more free reign with the drugs in his system.

3) Yes, take the booze, knives, guns out of the house. Just for peace of mind. Also, the alcohol with the drugs can make him do things that are completely out of character.

Call your doctor about all this as well. We are no experts.
posted by Vaike at 10:05 AM on March 2, 2012 [2 favorites]

No, you're not being overly dramatic - mixing alcohol, tylenol, valium and oxycodone is incredibly dangerous. Does his doctor know he's taking the tylenol? If the oxycodone formulation he's on also has acetaminophen in it, he could be taking too much, which can cause liver problems or even failure, especially if booze is in the mix too.

I think you need to get him in to see a pain management specialist immediately - the cocktail of meds he's on is extraordinarily dangerous to somebody who's so impaired that he doesn't remember how many drugs he's taken or that he's not supposed to drink.

Not a doctor, this is not medical advice.
posted by strangely stunted trees at 10:13 AM on March 2, 2012 [4 favorites]

My mom had knee replacement several years ago and was put on an opiate (I don't recall if it was oxycodone). She'd had bad experiences on opiate pain meds in the past but had forgotten to mention it to her docs. When she was on the opiate after knee surgery, she ended up exhibiting many similar behaviors you mention here -- disoriented, agitated, near-comatose-sleepiness, complaining of a lot of pain. I spoke to her doctors (because she couldn't) and requested they switch her to non-opiate pain meds. They did and she immediately improved. At any rate -- speak to the doctors, there may be other meds that can be prescribed.
posted by macadamiaranch at 10:15 AM on March 2, 2012 [8 favorites]

What did the doctor say when you told him the level of pain had not subsided and described how your husband was acting?

Is it possible to hire a part-time caregiver? To give you a break, primarily, but also because they can more effectively monitor the situation with his pain, meds, and spaciness.

FWIW on Vicodin I was just tired the entire time, not spacy, and definitly not making impulsive decisions beyond laying on the floor to nap because the bed was too far away. If the impulsiveness a feature since he had the surgery/began the medication, or is he normally prone to that? My experience on the flipside of this, as a caregiver, was that is was frustrating and put tension on the relationhip to perform this role long-term. Take that with a grain of salt, as I was pre-teen and this was my father, so different situation, but it was incredibly stressful and even if you can get a friend or family member to help and give you a break, that'd be better than you doing this solo IMO.

Booze out of the house. Weapons out of the house.
posted by sm1tten at 10:32 AM on March 2, 2012

Question 1: I've taken narcotics post-surgery and been spacy and impulsive and then forgetful of the crazy decisions I made while high. However, I thought it was worth it because the drugs controlled the pain. If his current drugs aren't working for pain relief, I would address with the doctor right away. My doctor and nurses kept telling me that good pain management is an important part of allowing one's body to heal from surgery, so it was a high priority to them that the pain be controlled. Therefore I would try pushing this point with the doctor: "My husband is experiencing bad side effects from his current medications, and the meds aren't giving him pain relief. What are our other options for pain relief?"

Question 2: People have such a range of responses to pain drugs, this could be in the normal range. I can tell you that I wasn't that messed up, but I was never really alone for more than a couple hours at a time.

Question 3: It's definitely NOT OVERKILL to remove the drugs and weapons. Your husband is seriously impaired and doesn't know what he's doing; I think that protecting him from further harming himself is a great idea.
posted by medusa at 10:40 AM on March 2, 2012 [2 favorites]

Mrs. Advicepig had spinal surgery a few months back and simply couldn't deal with the opiates. She was switched to Tramadol and was herself within a few hours! Right now, it sounds like there's little to lose in trying to switch drugs.

Talk to the medical team about other drug options. This isn't something you can just suck it up and deal with.
posted by advicepig at 10:51 AM on March 2, 2012 [4 favorites]

Is it normal for him to be so spacey and forgetful on oxycodone, hydroxyzine and valium, and yet still complaining of pain? Is it a sign that we need to change his meds?

Yes and maybe. Lately I've had equally strong medications for neck pain (no surgery, no drinking) and I was fucked up. I didn't know up from down and couldn't remember if I'd taken meds or not. I could have easily overdosed. Get a pill box and set up some sort of reminder on his/your phone (I use this for iPhone).

I would definitely take the alcohol and weapons out of the house - unless you live in Kabul, you don't actually need guns, and no one needs alcohol. So what if you're "overreacting" (you're not) and he wouldn't actually do anything. My mother overdosed with pills and alcohol while trying to relieve pain from a migraine and nearly killed herself - 911 was called, etc.

I would also definitely call his doctor and describe exactly what you've told us. I would do it now.
posted by desjardins at 11:20 AM on March 2, 2012

Nthing the "dump the booze" recommendations. Narcotics and alcohol are stupid dangerous.

I'm sorry he's having such a bad time, but it sounds like he has more issues than pain management. You should consider counseling to deal with long-term problems.
posted by Johnny Wallflower at 11:32 AM on March 2, 2012

People react really differently to opiates. My dad was so much better after he got off the vicodin after recent surgery thanks to my mom pestering the doctors for some other pain options. I've never found vicodin does much for my pain, but I sure do find that it makes me spacey and feel awful. Definitely talk to the doctors about changing his meds.
posted by ldthomps at 11:39 AM on March 2, 2012

Mod note: This is a reply from an anonymous commenter.
I know someone who was in similar shape following spinal surgery and a similar drug regime. This person's caretakers didn't take their suicide talk completely seriously, and this person seemed to fall through the cracks of the post-surgical care system. One night a couple weeks after being release from the hospital, this person took their own life.

Please, please, please call your doctors and force them to pay attention to you and realize that something isn't right. You may need a neurologist or a psychologist. Pain and drugs and surgery interact in strange ways, and they can make people do things you wouldn't believe they could ever do. Unfortunately, there is not a great protocol at this point for dealing with this post-surgery, so you are going to have to advocate for your husband, but take it seriously, this is probably not a matter of your husband being a baby.
posted by cortex (staff) at 11:50 AM on March 2, 2012 [4 favorites]

Response by poster: Thank you, everyone. I am going to pack up the liquor cabinet and move it out to the (detached) garage. I told him this during a moment of lucidity and he understood and agreed. The weapons might be more difficult. I have a friend coming over to chat with him tomorrow (bro to bro) about it.

To answer some of the questions and suggestions above: he had a cervical laminoplasty, and he is a muscular guy so most or all of the pain is coming from the muscle involvement. The doctor knows he is taking Tylenol. The oxycodone he's taking does not contain any. We are already doing iPhone alarms and pill boxes, but he sometimes turns off the alarm without taking the meds. Then we're in a downward spiral all day because he's behind and the pain starts ramping up.

I wanted a gut check on whether or not this seems like a reasonable place to be two weeks post surgery and it sounds like we could definitely be managing his pain better. I will call his doctor about other options and go from there.
posted by fanta_orange at 2:54 PM on March 2, 2012 [1 favorite]

Do you mean the weapons are physically difficult to move or that you will have a difficult time getting him to agree to it? If it's the first thing, surely you can find someone to help, perhaps the friend who is coming over to talk to him. If it's the second thing, I would strongly consider doing it without telling him. I'd rather have an upset spouse than a dead one.
posted by desjardins at 3:05 PM on March 2, 2012 [1 favorite]

Response by poster: It's the latter. He has a handgun that he keeps for defense and he really doesn't want to give it up, because he worries that he can't "protect" me otherwise in the case of a home invasion. Logically, he's not in much of a position to protect me in his current state, but he's not exactly big on logic right now.
posted by fanta_orange at 3:16 PM on March 2, 2012

he's not exactly big on logic right now

Holy crap. Please get the guns out of his reach immediately. He is severely compromised right now, and could mistake you for an intruder.
posted by Johnny Wallflower at 5:56 PM on March 2, 2012 [5 favorites]

Once on Vicodin I thought the smoke detector was out to get me with its red blinky light. I wasn't deranged enough to shoot it if I'd had a gun, but I can see how that might happen. Have the friend talk to him about the handgun.
posted by desjardins at 8:38 PM on March 2, 2012 [1 favorite]

Remove the guns, booze and anything else he could harm himself or others with from your house. Don't wait and don't just hide them in the garage and don't tell him where they are. Take them somewhere else. It's just for the time being, until he's lucid and rational again. You need to wake up to the reality that he could very easily kill himself, you, your pet(s), anyone at all, if he gets into a delusional state or strange headspace because of the meds.

At this point, it doesn't matter what he wants because he's incapable of caring for himself and you have to do all of the thinking for both of you. He doesn't even know what he's doing. If you're at work all day, you cannot leave these things in the house.
posted by i feel possessed at 9:34 PM on March 2, 2012

Right, it doesn't matter if he agrees any more than if your three year old agrees that he shouldn't eat rat poison. You can't reason with a toddler or a heavily drugged adult; in both cases you just have to take the dangerous thing away whether they like it or not.
posted by desjardins at 9:43 PM on March 2, 2012

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