Father is refusing to accept leg needs amputation. What lies ahead for his adult children? Any experience or advice please...

Simon, I can hear your frustration and your anguish in each post.

I can understand your feelings. My mom had CHF. She also waited way too long for medical intervention. She also felt as though the doctors didn't know very much or very well. She also fought me - in her passive-aggressive way - when I would try to intervene. Like you, I was frustrated, exhausted and depressed - not to mention terrified. It's actually what drove me to this forum to begin with. And like you, I got a myriad of answers - walk away, place her, call in hospice. At the time, I remember my head spinning from all of the answers I got, and feeling like none of them were particularly helpful, because what I WANTED was the "magical" answer that would give me back my mom before she got so incredibly ill.

It took about a year of revolving doors - into the hospital, into rehab facilities, into doctor's offices - a year of her seeming to not care about her own health, just coming along to appease me - that I realized, in all of this, I really hadn't asked HER what she wanted...what she envisioned her ending to look like. I absolutely didn't know HOW to broach the topic of hospice. Would she think I was giving up on her? That I wanted her to die, to let me off the hook of taking care of her? That it would make me sound like a selfish, ungrateful, unloving child? I have faced a lot of scary things in my life; I have had to have a lot of hard conversations with people. But broaching the topic of hospice with my mom was one of the hardest things I ever had to do.

And God love her - I was on the verge of tears, but she was as calm as anything when I asked her. She was soooooo very ready to have the conversation. I think she put it off for fear of upsetting ME. She was so tired; so tired of fighting an illness she KNEW she was never, ever going to get better from. There was only the hope to maintain the status quo, and her quality of life was diminishing daily. By the time we brought hospice in, we BOTH could have peace - hers, knowing she tried her best to fight, and me, knowing I tried my best to keep the illness at bay.

If dad will not consider amputation, it might not be just because he's stubborn and trying to be as difficult as he can be. He might be waiting for one of you to broach the topic of hospice. I assume, if your mom is 82, he's also in his 80's. He might be tired of fighting. I think, with some people, when you get to a certain age, with awful chronic health conditions that have no hope of cure, death is not the fearful option that we, who are younger, believe it to be.

I will share that once we brought hospice in, it made things so much easier for both my mom and me. Not because the workload became less, because as people will tell you here, when someone is on home hospice, family is responsible for almost all of the care. It became easier, because hospice gave my mom control over her medical decisions. She could eat what she wanted - or not, if she wasn't hungry. She could make decisions about which meds to continue and which to remove. There was no more concern on her part about any visit to a doctor landing her into the hospital for another 10 day or more stay. followed by weeks in a rehab facility to try to get stronger. It might not seem like much, bit for someone who had been so independent having been reduced to that, it was freeing for her.

I hope you can find an answer that will give all of you - you, your sister, mom and dad - some semblance of peace.

Simon, presumably you and/or your sister attend nedical appointments with your dad.

Does he scoff at the doctor's advice in their presence, or does he feign compliance and save the scoffing for later?

I strongly think the only avenue is to get his attitude towards the prescribed treatment out on the table, i.e., "Dr. F, our dad is unwilling to consider amputation and my sister and I will be stepping away from his care. Can you describe to dad what will happen if he doesn't proceed with the amputation and advise him as to the level of care he will need, since we will no longer be available to assist him?".

It seems that perhaps you are enabling your father to deny his condition by providing free hands-on care. Maybe if you leave, he will realize that he actually DOES have to listen to the docs.

Why should he do anything if you are willing to give up your life and livelihood to wait on him? Nothing will change until you do.

To quote one of my fellow posters, Beatty "No new solution will be sought as long as YOU are the solution".

Stop being the solution.

People who think they would rather die of gangrene don't know what gangrene is. Alas by the time they find out it's too late for them to change their minds.

Simon, I'll put it a bit more bluntly and hope you'll forgive me. This decision is not up to you. Or your sister. Nor would it be up to your mother even if you and your sister vanish from the scene.

As long as you children and your mother keep arguing the case, your father is free to concentrate on opposing you and to console himself by believing that his opinion is more valid than yours (he's right. It is). Step back, and he will be left to oppose only his medical advisers whose only interest is in their correct assessment of the risk : benefit ratio. Let them do their job.

My SIL was 63 when she finally agreed to have her 'foot' amputated due to advanced Type II Diabetes which she ignored her whole entire life. She did lose weight, but it was too little too late. Her entire body was destroyed by Diabetes and the wound on her foot turned into an infection & went into the bone; she was hospitalized dozens of times, but nothing the doctors did would clear up the problem. So the 'foot' was amputated, but it was more like the leg all the way up to the knee. The other foot developed large ulcers on it at the same time.

The whole time she had people buying her Big Macs and shakes, her favorite food, and Cinnabons. Her sister housed her for 10 years before kicking her out; she'd had enough of watching her destroy her body the way she insisted on doing, by 'treating' herself to endless supplies of her favorite junk foods. She wound up living in subsidized housing, on disability, so things went even further downhill once nobody was there 'watching' her every move.

The prosthetic 'didn't work' because every time she tried to use it, she developed a painful sore on the stump. So she became wheelchair bound on top of everything else, and a burden to her son who had to do everything for her.

She lived in the doctor's office and at the hospital. She was admitted at least 2x a month and had blood transfusions weekly. She had cirrhosis of the liver from fatty liver disease that she ignored, and kidney disease from untreated diabetes as well. Amongst a host of other things too numerous to mention.

She liked to ignore the fact that she was seriously ill, too, but it didn't mean she wasn't seriously ill. She wound up pissing off her family members to the point where they stopped schlepping her around and she found transportation to all these appointments HERSELF. Everyone decided to stop enabling her and force her to do for herself, so she did, surprisingly enough.

In November she caught Covid b/c she wasn't being careful and went on a ventilator. She died 16 minutes after being taken off the ventilator; her lungs were destroyed by the virus. Yes, she was vaxxed but the doctors said her immune system was SO shot, that the vaxxes were pretty much ignored by her poor body.

My SIL lived the life she chose and died at 64. Nobody could stop her from eating what she wanted to eat, or from dying, either. Even if Covid hadn't killed her, organ failure would have taken her life shortly afterward.

If your father chooses to die by knife and fork, so be it. You can't save him from himself. You can, however, stop enabling him to kill himself and force him to do for himself now. Just practice saying No until it rolls off of your tongue easily.

Wishing you good luck trying to separate your life from your parents lives.

I’ve read your replies. You’re being ruled by FOG, fear, obligation, and guilt. Please take a minute to look this up and do some reading. Your depression needs help, after all what good are you to your parents or anyone else when you don’t care for yourself? Let your dad’s medical decisions be between him and his doctors. Let your mom’s choices in caring for him be her own, she isn’t going to change and you constantly jumping in will keep her from accepting other, needed help.
A dear coworker of my dad’s was strongly recommended to have an arm amputated. He quickly chose not to, said his life could end before he’d allow it. He wasn’t mean or crazy, he just knew the right choice for himself. He didn’t live long, and he passed without regret.

Simon, you and Sis telling him is not going to work. If his doctor has not done it yet, and he should have done it from day one, Dad needs to be sat down and told the worst that will happen. That the gangrene will get into his blood stream, go to his heart and kill him. If he is competent to understand this, then its his choice to die. Because he will die. Wound care will not do anything at this point. Tissue has died. You can't reverse gangrene. What is taking him to doctors accomplishing if he doesn't do what he is told?

The doctor needs to say to him that by not getting the amputation, he WILL die. If he wants to die, thats OK, so then he goes on Hospice. No more doctor visits. No more wound care. He will be kept comfortable till he passes.

I had a friend who had an amputation. Its not cut and dry. There is a lot of pain associated with it. She had to see a pain specialist. There will be wound care till the stump heals. She could never wear a prosthesis because she had a sore that was not healing on the stump. She suffered from phantom pain. She had a scooter chair to get around in and a special van. The doctor visits did not stop because she had the amputation. I know because we took her. She ended up passing from kidney failure. She was a juvenile diabetic. Had a major heart attack in her 50s, amputation at 60 and passed at 63.

Your Dad has choices. I am with your sister here. He is bringing this onto himself. Its not your fault. You can't fix stubborn.

You need to talk with the MD about the prognosis and likely outcome and need to know even the MD must guess at this. What IS certain is that if there is gangrene forming then your father, without surgery, is looking at an eventual death. And he should ask for palliative or hospice care evaluation at once. The MDs will need to level with your father and with his POA. Be certain all his paperwork is done.
As to how long someone can live in this condition that is very very variable dependent on so many things including condition, weight, mobility, age, luck and chance. Nothing will be set in stone. The problems of gangrene that is untreated becomes exceptionally malodorous; you are looking at a person alive with a rotting extremity to put it in the most brutal but graphic sense of things.
Occasionally people form a sepsis, infection in the entire system spread through the blood stream. This likely means, without treatment, a death within several weeks as each system shuts down, one after another, kidney, heart, lung.
I am so sorry. There is no good answer here. Amputation can be exceptionally difficult for the diabetic who has problems healing extremities and often it is being cut piecemeal one bit at a time to revise the stump that won't heal. It can mean death in a very prolonged manner.
This is my experience as a nurse, but I will tell you it varies a lot and your best advisor here is your Dad's MD. I am so sorry. Not everything has a good answer, and this certainly does not. This decision belongs to your Dad and hopefully he can be informed. At best there is no assurance he can live through this. Please speak with his MD and have family conference to share ideas and information. You are facing down very tough times. I couldn't be sorrier.
As to what this all means to adult children? Your father needs placement in my opinion. Wound care will become worse and worse and worse. It will all mean immobility and helplessness. This is something for skilled nursing or for nursing home with hospice to handle. I doubt that the adult children will be able to handle this situation no matter WHERE it is going, either amputation or hospice, wound care and eventual death. Your father will mourn this decision in whatever way he must; let him, and it is worth the mourning.

Simon, you have received so much great advice and have posted that you are exhausted. I do not expect a reply but wanted to send you a hug.

You objectively can see that what your family is doing now is not working, for you, your sister, Mum nor Dad. but it does not make it any easier to let go.

I had a neighbour Al, who was diabetic and chose not to manage his blood sugar levels, he had painful ulcers on both legs from the knee down, so painful that he could not wear long pants even in the winter. His family was so exasperated with him as he was killing himself with food. Mini donuts, Coke, candy, cookies and more. Finally they moved out as they could not live with him slowly killing himself.

I would go over and bring him fish, fresh berries and sugar free jam when I made it. We would talk and he knew exactly what he was doing. He knew he would die and he did in his early 60's.

We had a patient when I worked for the podiatrists, who also did not believe in managing his diabetes. His big toe rotted off. I went to see him in the hospital as I loved to listen to his stories, he did not live much longer as he too refused to manage his diabetes.

You cannot care more than he does.

If your father does not get the infection under control, he does not face good outcomes. As a nurse, I know that he is likely to develop sepsis (whole body infection that is hard to cure) and can die. Even with amputation, he will be a poor candidate for wound healing if he doesn't keep his diabetes under control.

It might be better to ask him what he truly wants out of life. If he would rather die with 2 legs than live with 1 leg, you might have to honor that request.

I worked with a woman whose husband I had worked with at another job. He had a bad heart attack but went on eating what he shouldn't and the worst, smoking. She said she had begged him to take care of himself, to no avail. Finally she told him that he was on his own. She was no longer going to beg. She was stressing herself and he didn't care that he may die.

Does Dad have some cognitive decline? Because I can't imagine him not being aware how gangrene works. I asked my 74 year old husband what it meant and he gave me the right answer. When you hear the word "gangrene" its like hearing the word "cancer".

In the end, it's Dad's life. At this point I would plan for the inevitable. Worry about Mom at this point. Making sure all is in order for her.