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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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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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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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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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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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hello Chlokara, what I did, and recommend to every caregiver is to obtain a Power of Attorney. You can research them online, print it out, have your spouse sign it in front of a notary. This is the legal document that tells everyone " don't argue with me" I manage my loved ones care.
At times I have had to inform Medical professionals that I have a POA and I manage my wife's care since 2005. If you notice that a medication is not working, then i strongly recommend contacting his Physician and let them know " this medicine is not working, can we try a different medication.
What i take for anxiety is Mirtazapine 30 mg, once a day at nighttime. It helps also as a sleep aide, and anxiety. Pain is so hard for a loved one to deal with, and it is also hard for the caregiver to watch day in day out. I would strongly recommend that you inform those people that seem to not want to listen to you, that " You need to listen to me ", and no one knows better then you what is working for your husband, and what is not working.
Sometimes, as caregiver for my wife, I have had to make changes as to the services my wife was receiving. It is so important that Medical professionals listen to you, for the plan of care for your husband to work for him.
My heart goes out to you, because a infection in the bone is not good. I would recommend you contacting his Physicians office, ask to speak to the nurse and ask what pain medication might work when the infection ids in the bone. I would also contact the Pharmacist where your husband's prescriptions are filled. Explain to the Pharmacist " my husband has a infection in his foot bone, is there a pain medication that might help?.
You can also do a online search " Pain medication for bone infection ". Then contact your loved one's Physician/nurse. Also, there is more then one Hospice agency available. I have always been one that wanted my wife to receive the best of care, so don't be afraid to change Agencies.
I have actually had Internal medicine Physicians tell me " that my wife is here because of me ". So, to caregivers, never settle for less, after all your loved one that you care for is "Depending" on you. Also, I wanted to let you know that medicines after a person has been on that same medicine, the body can get use to it, where it won't work as well as it did.
What I have learned about my wife, is that she is depressed because of her physical condition, so I talked to her Physician and for years is on Cymbalta. She started having sleep issues, so for some time she has been on Trazadone. My wife was diagnosed with Multiple Sclerosis in 2005. My wife has to date (3) brain lesions that cause short term memory loss. The list goes on and on as to other conditions, and the list is long.
I said this to say this, "YOU" as the caregiver are the spokesperson for your husband. From what i read you said your husband has a bone infection in his foot. The Medical Professionals want to amputate the foot. It's up to you to make sure that Medical advice is taken serious.
That while, your husband may not want his foot amputated, on the other hand the alternative is that infections spread, and it sounds to me that the Physician is concerned that your husband's infection may spread through the bone to other areas of the body.
I recently had to talk to my wife, and i had to tell her. This wound on your back, they are concerned that infection may get in the bone. I told her that would not be good because the infection can spread through the bone to other parts of the body. I had to explain to my wife "I want you around for a long time, and I don't want you to die. Unfortunately, infection in the bone has a very high risk of causing death.
I look at caregiving for my wife, as it is my responsibility to manage my wife's care with Medical Professionals to improve my wife's "Quality of Life" at home.
So, if i had a choice (amputation) or risk of death, amputation, and that's why they make Powerchairs.
Take care
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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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In another thread I detailed the issues I had with hospice getting the right meds for my husband, so yes, it can happen. In my case, though, they didn't believe me when I said he was still in pain--according to "guidelines," he "couldn't be." They also had trouble getting his mind to calm.

I just kept at them. They finally got the right combo's for body and mind.

What is hospice saying about his lack of response? Are they being pro-active and open to further adjustments or just letting things ride now?
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JoAnn29 Apr 2022
They can tell a person is in pain by their Blood pressure.
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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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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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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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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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