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I’m taking care of spouse, post-op,video-assisted thoracoscopic (VATS) surgery, lobectomy for lung cancer, GI hemorrhages post op, now allergic reaction to Tramadol last evening. He was discharged after the first surgery with Oxycodone for pain control. Developed ileus, had to go to ER to enable the constipation to be medically resolved. Next day, collapsed at home, shock, black stool, vomiting massive amounts of blood. Emergency repair one week to the day after the VATS. He was discharged with hydrocodone with Tylenol for pain control, or Tramadol, if not needing quite as much pain relief. He refuses to take the hydrocodone/Tylenol for fear of another ileus. So he started the Tramadol, which gave good pain relief when the Home Health nurse insisted he take the pain medicine. She came Monday to assess. Last evening, he’s itching furiously, swollen arms, hands, legs, feet. I removed the Tramadol, gave him Benadryl to treat the allergic reaction. No airway swelling complaints. He got up about 4:00 AM, took Tylenol for the pain. It’s not cutting the pain at all. Which brings me to the next problem. The man is verbally abusive. He abused me horribly on three occasions when I was so sick, I required hospitalization for diverticulitis. I am refusing to be abused by this man. We are both senior citizens, both early diabetic, both having ambulatory and pain issues, both use cane to walk. I am on oxygen for lung disease. He smoked himself into emphysema. We don’t have funds for an aide to come in. Trying the home health route, to get him stronger.


So just how much abuse must I take? I have started telling him he’s getting a one hour time out, and I remove myself from his tirades. When he settles down, I will assist again. How on earth am I supposed to be a caregiver, sick myself, and be abused on top of it? If he could just get some pain control, it would be manageable. This is not manageable.

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Call the people who are sending the HH nurse. If they're no help, go back to his surgical team. This is not manageable. Somebody needs to sort out the pain relief and read your husband the riot act about complying with the prescription in full, including any constipation prevention, and that person can't be you for all sorts of good reasons.

His behaviour is appalling, there is no reason why you more than anyone else should be prepared to tolerate it, but given the pain and how ill he must be feeling at least you know where his anger is coming from. Once the pain is under control he owes you a very large apology.

Two questions: was rehab never a possibility? And, what's his prognosis?
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Are you in the US? If so, you could have told the discharge nurse that you no longer can care for your husband. They could have found a LTC facility and started Medicaid approval. As the community spouse, you will not be left with no money to live.

You now need to talk to the Home Health Nurse and tell her you no longer can do it. Husband needs more care than you can physically give. If she doesn't help, call ur Doctor. If he is hospitalized again, don't allow him to be discharged home.
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Thank you folks for answering. I advised the doctors and nurses, while he was in the hospital, that I cannot provide the care he demands of me. The doctor refused to put him in rehab for a few days to gain strength. If doctor won’t write the order, you cannot get the help. We don’t have funds to pay for assistance, if Medicare/Medicaid doesn’t pay.
His prognosis was good, after hospital discharge. Lung cancer was removed, one lobe of the lung. No cancer in lymph nodes.
Hubs apparently can not tolerate the pain meds prescribed, due to allergic reactions. Not even Tylenol. He is taking a brief course of steroids for the swelling/itching caused by the Tylenol, after allergic reactions to both Oxycodone and Hydrocodone. I am giving him Benadryl as well as the steroid for itching, which thankfully, makes him sleepy. So he can sleep at night. Unfortunately, I can’t make him take Benadryl around the clock, due to him refusing it. I have put a spray bottle of Biofreeze on the table next to where he likes to lay and watch TV, to help with itching. He even demands I stop what I’m doing, to spray it on him. There is nothing wrong with his arms and hands, nor with his legs and feet.
I’ve started talking up the very real risk of pneumonia, if he continues on the no-activity path. He still demands my service whenever he sees me sit down, or walk into the room. Our home is small, no family room, nowhere to go to get away from his incessant demands. Home health nurse stressed to him he has to get out of bed and move, or he will not only not get better, he will actually become weaker. But he doesn’t listen to anybody, as in his view, he is the only person who is right.
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JoAnn29 Dec 2018
Sounds like my late father.
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The next time he's hospitalized, and he will be, refuse to take him home. No matter what they tell you or threaten you with (or he does), tell them you are unable because of your own health problems, to care for him, especially as he's non compliant and verbally abusive to you. Hold FIRM; they will have to find a place for him, and if you don't have much money, the facility can help you apply for Medicaid for their cost retroactively. Until then, can you make yourself scarce when he's demanding your constant attention? Go visit a friend, go shopping, take a nap, a walk - something? My mom is demanding; even though she does it sweetly, it's SO draining and aggravating! I've just learned to leave, or sometimes tell her to stop micromanaging me and demanding service. She gets real quiet and sulks a bit, but stops for awhile.... if he won't physically hurt you, you can try that. God bless you, sweetie; it's not easy, is it?
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I echo the comments here.
Once he is hospitalized you must make it VERY clear from the start that you can not SAFELY care for him. If you do not take him home I can tell you now they will not call him a cab and send him home.
And this also goes for you if you are hospitalized tell them that you can not be SAFELY cared for at home. I also bet they will not call a cab and send you home. (does anyone call a cab anymore?)
You could also back this up...the next time he becomes abusive...and I do hope that you are talking just verbal abuse call 911 or whatever emergency service you have. If this is physical abuse PLEASE file reports the next time he even lifts a finger or raises his voice in a threatening manner. Leave the room and call 911. Lock yourself into a bedroom, bathroom, go to a neighbors anything to get out of the house.
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mally1 Dec 2018
Yeah, Rapid City Regional Hospital did a procedure in the middle of the night on my husband, who had been brought 60 miles by ambulance, and then way before he came around, they called a cab and left him out on a curb in a wheelchair with another guy.... to be driven 60 miles back home. He was barely coherent when he got back (I can't drive at night). So, yes, they do.
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Ask the doctor if he can be prescribed a fentanyl patch. This is a very small slow release medication that is replaced every third day. I don’t know if they will prescribe it for him, it is very strong but it worked well for my father when he had a leg fracture.
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Thank you. I did ask about the Fentanyl patch yesterday. Doc feels it’s not necessary at this point. Spouse very slowly getting through the worst of the pain. Yesterday the internist gave him another course of prednisone, because he is still dealing with hives from drug reactions. Still spraying him down with Biofreeze 2-3 times a day, as needed, to help with the itching. This prednisone pack is a 12-day course. The hives are settling down, so he tried Tylenol for the pain this morning, and it didn’t get worse, so I still feel he is not allergic to Tylenol. Most likely, two surgical procedures, two hospital stays, back to back, and the Oxycodone, hydrocodone, being morphine derivatives, probably built up enough in his body to create the extended reaction. He hasn’t had oxy or hydro in over a week, so finally getting rid of it from his system. He says the pain isn’t the overwhelming, constant pain it was at first, but now periodic sharp, stabbing pain. It’s just going to take time.
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When I had both knees replaced at the same time I refused to take those drugs home with me as I didn't want to get hooked on them - the medicine that helped me the most & was better than oxycodone, codeine etc was something called 'gavapenton'[sp?] which calms the nerve pain & it is sometimes used for epilepsy - ask the drs about it - I found when the nerve was calm the pain was nearly gone so regular Tylenol was enough - I hope this helps you with your 'bear in pain'
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Moecam, thank you! Gabapentin is often used for peripheral neuropathy, so your explanation makes sense. I even considered giving him a muscle relaxer to just get myself some emotional relief. Lol.
anyhow, as Oxy and Hydro are morphine derivatives, and as he had a second, emergency surgery for the GI bleed, right after being released after the VATS lobectomy, I think the buildup of morphine post op, plus the strong Oxy and Hydro, were the cause of the allergic reaction. The second round of prednisone pack, this time seems to be kicking the allergic reaction. He is taking Tylenol for pain now, and cut back on the Benadryl for the itching. Seems to be reducing the anxiety, which reduces the verbal attacks. It’s just bloody awful, as his health is precarious, and this abuse keeps tearing its ugly head. I went across the street to chat with the neighbor a bit yesterday, just to get away from his tirades. Honestly, the anxiety, refusal of any social activities, not allowed to invite anybody into the house, very isolating, form of abuse. Really don’t like the man I’m taking care of, much of the time, to be honest.
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OMG I feel so sorry for you! Your husband is mad at the world and taking it out on the nearest person, which is, unfortunately, you. Pain makes us do off-the-wall things and people we love get tangled up in the efforts. My hubby is bedridden and dozens of doctors can find no reason why. So, he blames me. He vacillates between being nasty and acting like a preschooler. I actually just texted my kids to “get me the f out of here,”. I’ll get-no response.

I’m convinced we have to find the strength within ourselves to tolerate all this. I can’t tell you how many times I have just wanted to pound my head against the wall. My husband has many medical issues as well. I know what you’re going through. Right now, he’s “napping”. It’s 7PM and I haven’t made dinner yet. He will wake up at 9 or 10 and expect me to make dinner because he’s now ready to eat and the king must be served. Sometimes I just want to lay in bed and have someone serve me. 😡
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CaregiverL Jan 2019
Simply don’t respond to him! Sometimes my mother wakes me up for a sucking candy or drink & I just gave her 5 minutes before...& I just got back into bed...& I hear her yelling over & over & the more demanding & mean she gets, I just plain ignore. & I’m younger...but I just turned 60! She’s 91 w dementia.
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"Dozens of doctors can find no reason why"? WTH (heck)? Can he walk? Does he just want to be waited on? Is he in pain? I know one thing; it's boundary time! You will be able to tolerate this a great deal more if you "set up a win" by telling him when YOU will do things; i.e. serve meals, do baths, go to sleep... and if he isn't ready then, leave him a sandwich, let the bath go, close your door and sleep when you need to..... There are ways to get back the control of your life and situation that you really need here.
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One thing I had noticed with career caregivers, if they have a client who is insulting, the caregiver just agrees with the person..... "you're right, I am not the smartest pencil in the pencil box".

And like Mally had said, set boundary time. Tell hubby you will check on him at 3pm to see if he needs anything, then you will check back at 5pm. Don't call for me unless your bedroom is on fire.

Some people just aren't user friendly when they are dealing with their own health issues. It is something they cannot fix on their own, and they are frustrated, so they take it out on the closest person. Is is fair to you? Of course, not.

I also got verbally abused back when I had a very serious illness. Like, who treats a person that way? Having me crying all the time is suppose to help??? Turns out sig other was afraid that he was going to loose me like he lost his late wife. That was suppose to make ME feel better? NOT. Next time I plan to hire a caregiver to help me, or a caregiver to help him if he is the patient. Let them deal with him.
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All answers involving LTC and HH are right on. I'll add that your care is paramount and might be boosted by support groups and the like. Being mentally and emotionally supported really does help.
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I am so grateful to you people for the ideas, the validation, the support, understanding without judgment. I am working on small ways to regain control of my own self care, setting some limits. It helps that he is much improved at this time, compared to how bad he was. It isn’t right to abuse the closest person because you are mad at the world. Cannot help but wonder if his doting mama handicapped him in the emotional and coping skills department, raising him as a premier human being.
I am now able to catch up on my own healthcare needs, somewhat. Mammogram finally, recalled for ultrasound to check out a lump. Was merely fluid filled cyst, I get them, but it’s always got to be checked out when a new one appears, in case it’s ‘the one’. Creates anxiety, but no reason to lash out about it. You just make the appointments and roll with it. Today I had my diabetic eye exam, have some inflammation in one eye. $50 prescription sitting at the pharmacy waiting for pickup. Probably will get it in the AM, as I don’t venture out alone after dark. Too much crime, especially targeting elderly women and disabled persons. Gradually getting my little medical issues ticked off the calendar.
Anyhow, it’s some progress. Not really self care, except that it all had to be delayed in the midst of cancer surgery, GI bleed, and hubs many complications. We’ve had so much, and only moved here last May. I’m not totally unpacked yet. But you’ll have that when the family workhorse ends up hospitalized in the middle of moving to a different state.
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