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My husband, age 74, is suffering from an infected bone in his foot which he does not want amputated. The infection has been going on for nine months despite oral, intravenous and infusions of antibiotics. He is under the care of hospice now, but nothing he has been given has helped the pain, not oxycodone or mophine. He has been suffering from dementia for 5 years, and although risperidone did help some at one time, he has been put on seraquel and some other drugs for anxiety and agitation, and none of them help at all. As sole caretaker, I have had a rough time of it, but now it is even worse. Has anyone else had the problem that their LO was resistant to medicine?

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I would talk to hospice folks about his medications. Seems like they need to be reviewed. By a hospitalist-which is part of their specialty, of untangling complicated patients and their medications. I am not sure if Morphine patches are still part of pain management, but it worked wonders for my mother's pain related cancer-worth asking about. As well as tapering everything down your husband has been given-tolerance may also be part of this-worth asking. Although a last resort, amputation seems to have been suggested. Again, that needs to be re-assesed too.
Yes, medication resistance was difficult with my mother, but it got to the point, where I'd laugh and say "you just don't have a choice, and do you want to make your doctor angry when I tell him you won't take your meds?" She adored the doctor-he was a great guy and Hollywood handsome too.
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Dear Chlokara,

Sorry to hear about everything your husband has been through.

My father had the opposite issue and was sensitive to medications and suffered from side effects. Everyone is so different in how they react to medications.

I would suggest consulting another doctor and see if there is anything else they can try.
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Oxycodone or morphine are strong drugs, but the effect does depend on the dose. Both are addictive (fentanyl is worse), and a lot of pressure has been put on doctors to limit the prescriptions. It might be worth checking to see if the dose should be increased. My mother (at the end of cancer) had morphine with a pump that put it into a vein every couple of minutes. I’ve only heard of morphine patches that stay on for some days, and might be less strong, but I’m not really up to date on that.

The simplest way to get a second opinion might be to ask for a Hospice evaluation. They might be able to help anyway, but should also check the pain killer dosage situation. Love and best wishes to you both, Margaret
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As a nurse, I'm pretty sure that an infection that has been present for that long and has not cleared up despite intensive medical interventions is an infection that is not going to heal.
He is allowed to choose to refuse amputation.
Hospice is focused on comfort and quality of life, not number of days of life. Concerns about 'addiction' are misplaced. He is not going to develop drug seeking behaviors, and asking for relief of pain is not drug seeking.
He should be getting a HHA for personal care a couple of times weekly.
I'd suggest a meeting with his hospice care team soonest, to help answer your questions, figure out other things to try, how hospice sees him in terms of pain/agitation/comfort, etc. There are non verbal pain scales that can help with assessment.
Sometimes the pain medications are not used often enough, or in the right doses. As a hospice nurse, I can tell you that adding a low dose of methadone to his pain management plan can provide huge benefit. Ask the team about it. Very low dose, gradually increased every 3 or 4 days, until patient may shows pain only with being bathed or having wound care. For those episodes, a small dose of morphine is short acting and effective. Methadone is much better tolerated in the body and easier to metabolize than other pain meds.
Once his pain is being relieved, he may have a very sound period of sleep. That means he is comfortable enough for his body to relax into the deep restorative rest that has been absent for so long. It is not a coma from drug.
Talk with your team. You have good questions and you need more help from them.
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There are infections that will not respond to antibiotics. Usually, when the resistant infection is generalized the patients dies from sepsis. In the case of your father, there is a possibility that the amputation of his foot could get rid of his infection and save his life. As long as he refuses the amputation, he is unlikely to improve and risk death. Pain killers and tranquilizers have limitations.
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Chlokara Apr 2022
Yes, both my husband and I know the prognosis of this. I just want him to be as comfortable as possible during whatever time he has left. He has been in pain from so many different things for so long, I don't expect a cure, I was hoping for a little peace for him.
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More questions than answers, sorry.

What does hospice say? What approach are they taking to managing his care?

How does your husband express his pain, anxiety and agitation? For example, shouting out, lashing out, writhing, attempting to get up/walk around, rubbing his foot/leg, pulling at dressings - I find I don't want to imagine any more.

What condition is he in physically? - bedbound, able to get up with help, able to get up without help?

Does anything make any beneficial difference for him?
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If he does not have his infected foot amputated, he will eventually die from sepsis. Don't expect that medicines will perform the miracle. The cause of his suffering is very obvious. Refusing the amputation is no different than suicide.
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Thank you so much, everyone, for your advice and your encouragement. I really appreciate it. We are new to the hospice situation, and my husband has been in pain for so long that I hoped they would march in with the magic formula, and the pain would stop. I am glad to know there are many different drugs or combinations of them they can try. They do listen to me, but I realize now we have only started. I appreciate the very detailed answers some of you have given me, with actual names of medicines. I will talk to the Hospice people about them. You have given me hope some eventual peace for my husband. And, funkygrandma59, my husband had an electrical burn which passed through his body when he was younger, and later a brain tumor was removed, so he has very complex problems affecting him. And, yes, I know that not having the amputation is a death sentence, but after fighting back from two serious illnesses, he does not want to do it again. That is his choice. Again, thank you all so much.
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My husbands pain was very difficult to get under control and at times impossible. He was under hospice care in our home for the last 22 months of his life, and they struggled the whole time trying to help his pain.
His hospice nurse thought that it might because of all the damage that his massive stroke had done to his brain many years earlier, that the medications didn't respond as they should have.
It was hard to witness for sure, as even in his 6 week dying process when the body experiences great pain, hospice couldn't control his pain and he suffered greatly, going through a bag of fentanyl every day for the last 3 weeks of his life and still no relief.
I think everyone's brain processes medication differently, and when there is trauma to the brain it effects it differently as well.
My husband also suffered from seizures due to his stroke and he ended up having to be on extremely high doses of 3 different seizure medications to try and keep them under control, and even then he still had break through seizures.
So everyone is different, and there's not a one size fits all when it comes to medications.
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As a red head with a family of red heads and a former red headed husband who had many different surgeries during our marriage I have learned that pain and pain killers do not work the same way for all people. Us Gingers react differently to anesthesia too. My ex was given 5 times the usual amount of morphine when he broke his leg. He needed that much to control the pain.

Talk to hospice, explain that he has a high pain tolerance and it may take longer for pain relief to work for him.

I stood at a friend's bedside when she was having an acute diverticulitis episode. She is a red head too. She cried tears of relief when the doctors gave her morphine. It was the first time she had been painfree in 2 years.
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