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

Simon,

If you read my story of myself and my brother I have been where you are. He has severe diabetes from eating anything he wants and not caring about it for years. He has always been single and has no one to care for him except me, who lives 45 minutes away. My other brother helped with his care for a week and then wouldn't even see him anymore.
About 3 yrs. ago he was told his leg needed amputation. He refused, thinking he knew more than the doctors. He was put in a rehab after an infection which he hated and called me every day to get him out. I spent a whole month getting him out of there with endless calls and paperwork until I was going crazy. I forced him to get some help which lasted two weeks and then he fired them. Many many incidents in -between. Two years ago he had the leg amputated and by that time it had to be amputated well above the knee which made it much harder to get a prosthetic. At the same time, his body reacted to all the drugs he was taking with a horrible itching rash so that he had to be put on steroids. He gained 50 pounds back so now his leg doesn't fit anymore. He never got to use it. When all this was happening, his other leg started going bad and he has bad neuropathy in his hands and feet which really limit what he can do. He also has two torn rotator cuffs so he can barely move his arms and cannot even push a wheelchair. He was sent to another rehab which at least got him able to transfer himself from a bed to an electric wheelchair and gave him some hope. He has been blacklisted from 2 visiting nurses associations and all the temporary help he has put up with has left him, except for the latest who just does his shopping and some cleaning. He has not had a shower for a year because he doesn't want help.
During this time I went to a counselor because I was so involved with his life, it was killing me. I was so worried about him and felt so responsible for helping!! I couldn't just let him alone if it meant he may die, could I? I had not been brought up that way either. I was in a severe depression too and started an antidepressant. The counselor helped me set boundaries (I was also having to put mom in an adult facility during this time) and get some of myself back. I stopped doing everything for him, taking him to appointments, shopping etc. and interacted only as a sister, not a caregiver. It was very, very hard to do as he does not take care of himself and refuses or loses all the help gets.
Two week ago, I called him and he didn't answer for a whole day. The next day I called again and no answer. I went to his house and found him on his back, leg hanging off the bed, eyes wide open and mouth wide open. He had been lying there 2 days and remembers nothing. I thought he was surely dead and called 911. He was taken to hospital with another bad infection in his "good leg"" and then had to go to a facility to finish his antibiotic treatment; kicking, screaming and complaining all the way. He refuses to get help even though he has the money and has asked me to drive the 2 hr. r-t drive to pick him up because he doesn't want to pay a cab. I won't do it. I feel I have done enough and been manipulated enough. It never ends. He has told me he will lie to the social services saying he has full time help so he can get out of there.
I hope you will get to the point where you can have a life of your own and see that your father is making his own choices. We all have a right to live the life we want even if it's not what we would choose. Get some counseling so you can work through your emotions and see what part you need to play with your father. Believe me, I never thought I would get to this place. Best of luck to you.

Simon, just want to say hi & that we can only do so much, right?

"This is not a cruise ship".

I just LOVED this line! I want to add that to the coffee cup or teeshirt range.. Many of Barb's lines are on that list already 😁

Simon, how are things with dad?

if your father is mentally fit and he does not want leg amputation, no one in the world can make him do otherwise. Worrying and fussing over it won't solve your problem. Stay out of it. Just go for counselling for yourself and stop trying to fix all your Dad's problems. he will live as he see fit and die as he see fit.

Your Dad got you, your sister and your Mom all wrapped around his fingers and he is enjoying life just as it is. Tough but let him be.

Responsible for our parents. To a degree. To make sure they have decent shelter, are fed, and safe and warm. But to expect them to do what you think is best, no. Your Dad makes his own decisions when it comes to his care. Yes, he is very ill informed in what it means to have gangrene. Did his doctor sit him down, look him in the eye and tell him without the amputation he WILL die? If not he needs to. Also, once gangrene sets in there is no cure but amputation. Once your Dad is told this and he still choses not to have the surgery thats his decision. Your not a bad son because he won't do what might mean the best for him. Once Dad realizes what his future holds, you need to make sure he has everything in place for Mom. That she too understands what his decision means.

You do not enable or disable your parents. You have them do what they are capable of doing. You set boundries now. If you don't, caring for them will be very stressful. Never make the decision to live with them or them with you without exploring options. Also considering your spouses feelings and how it will effect the rest of the family. Believe me its not easy. And please none of that "we want to keep Mom/Dad in her/his home as long as possible" If by doing that it means you mowing the lawn and doing the upkeep, its time for Mom/Dad to downsize. They can no longer afford to live in their house, you don't financially do it. They downsize. This is life.

Your sister has the right attitude.

Have you considered a family care meeting with him, wound care, and the physician in charge of his care? Perhaps with everyone present explaining the consequences of lack of appropriate care will help him accept his current condition. I wonder if his refusal is based on fear, denial, or both? What is his current mental status? Could there be any cognitive issues involved such as early stage dementia or depression? Lastly, is there anyone within his inner circle who is the most influential? This is a tough situation for all of you. Hopefully, he will listen to reason.

Simon, you keep talking about how hard this is on you, but you are like your father in that you won't proceed forward with your own plan. Not even a three-day respite for yourself because you're worried about Mom. Worried about her doing what? Escorting dad to the grocery store so he can limp around looking for lobster? Her cooking gourmet dinners for once? That's called making them take responsibility if only for 72 hours.

You and only you can define how you are going to help with these things, and for the things to come that will be harder.

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.

Dad is probably upset with the circumstances. His leg being damaged to the point of amputation, because of diabetes, what other parts of his body could have been damaged by diabetes that he does not know about.

He'll have to learn how to walk and use a prosthetic if he decides to go through with the amputation, which he may not be willing to do.

Good luck to all of you.

I'm sorry that you're going through this. Maybe you can begin by telling him that he needs to find alternative transportation to the wound clinics because it's not going to improve, you're exhausted and there doesn't seem to be an end in sight since he won't accept his diagnosis. If his leg is getting gangrenous, he may end up in the hospital with no other choice because septicemia will probably set in.

Unfortunately for now, it seems that your father has made up his mind. I get angry at my mom who absolutely refuses to go to the pulmonologist. Her lung conditions could turn serious and possibly fatal, but in the end it is her decision, as angry & depressed as it makes me.

If your father has a clear mind and he is not demented, he has the right to refuse treatment and accept the consequences. He cannot be forced to have the amputation. On the other hand if he has dementia and he has been declared incompetent by the Court, whoever has the Power of Attorney will have to decide for your father. Remember that only the Court can declare mental incompetency. Having dementia is not enough, he is still legally competent and can refuse treatment.

Simon, can you have a private talk with your mother? Tell her the options for Dad, including hospice and acceptance that he can make his own choice about amputation and pain versus an early death. That you are worried about her, the risks of her collapsing first, and the options for the rest of the family if she can’t continue her own care in this. It isn’t clear if she is also in denial, or if she simply can’t get away from FOG. Help her to see her own choices, because you don’t want to lose both parents.

It’s possible that this might change the situation with dealing with Dad. Even if it doesn’t, it might help one or both of you to be clearer in your own minds about what you can and can’t do, should or shouldn’t do. Clearly the long term situation in your family is difficult, but even if you just talk TO her rather than WITH her, it might be one way to change an entrenched situation that just isn’t moving now.

Simon,

Your father is doing things that could shorten his life, he is in denial and there is no care plan.

The same applies to yourself. You say you can't stand up for yourself, but in truth that's that you won't, because it's your voluntary decision. Just as it is your sister's. And in fact, your mother's.

You are assisting not only with his every need, but his every want, and talking about your mother. But she's choosing this for herself, and worse, all she has to do is call and say it's not for Daddy, it's for her.

You, however, have it within yourself to get an action plan for yourself. One way that starts is by not enabling Dad's every whim or want, as opposed to a need.

His limping around for lobster and fine cuts? That is a want, and one that is directly detrimental even to him. Quit doing that for starters. Quit cooking these gourmet dinners. It's exhausting and they don't need it to survive.

I would start there. It sets a precedent that you won't be a nanny-slave, including in your own mind, before more needs accrue.

I forget if you're actually living with them or what your employment status is. Fix both if you are depending on them.

Simon, what's brought all this to a head?

You say you're too depressed to get angry, but actually it is the "deep anger" which you refer to just before that and then at intervals throughout your replies that's really welling up, isn't it?

And you have the holidays ahead of you. Woah. Fun.

Keep checking in to vent if it helps - I think it might! Are you going to be spending much time with your parents?

I think the best thing you can do is change your focus to helping your mom rather than seeing it doing all this for your dad. You're 100% correct that Mom won't step back, so you can't either. Mom will be the first to go from all the stress.

You might ask Dad's doctor for a hospice evaluation. Maybe that's what really needs to be talked about at this point. Dad's refusing medical advice, so wound care is all that's left to him. My mother was on hospice and had wound care done by the hospice nurse throughout. (Her wounds were Covid-caused, not diabetic, though.) Since the care will be done at home, you won't have to haul him to appointments any longer.

Perhaps it's time to sit down with Dad, tell him you accept his decision not to amputate, and get him set up on hospice. Tell him he's not required to die within the 3-6 month timeframe, but as you understand he's refusing medical advice, this is the natural next step and you're going to help keep him as comfortable as possible.

That conversation will either be what he's be looking for, or it'll wake him up.

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.

Perhaps and I know this is going to sound extreme, he needs to look through a series of images of people with gangrene. Let him see what will happen if he refuses the amputation now. He sounds to be in the fortunate position that at the moment the amputation would allow a prosthesis, maybe shock treatment of seeing people more advanced than he is would persuade him. I don't know your father or whether this would be appropriate but seeing pictures of where he is, where he is going and how people have to live MAY be something to consider.

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.

Simon, more ((((hugs)))).

Are you working with a therapist?

Unhealthy families have few boundaries; one of the most damaging aspects is that children grow up with a misplaced sense of "I am responsible for daddy's/mommy's rages/happiness/despair/illness/death/divorce".

It ain't true. You are responsible for you, your actions and YOUR behavior.

Your father is suffering from a delusion that he can wish his diabetes away. Sad, but NOT your fault and not within your power to control.

Simon ((((((hugs))))))).

Folks who "know it all" eventually find out the hard way that they don't.

Stop making a fuss and start taking care of you.

Google "Dunning-Kruger Effect".

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.

Simon,

Your dad puts weight on this foot in a way that can exacerbate wounds every time he limps around. It's like eating chocolate donuts in his condition.

Don't end up guilting yourself because you assisted this.

Feeling 'frozen'.. I never noticed the pun before.. but to become 'un-frozen' you must 'let it go'. In all honesty there is much about Dad's situation that you have no control over & cannot change.

With things we cannot control or change, we must let them go. Or rumination errodes our mental health.

Not letting go of love but letting go of the fear of not being perfect, fear of what will happen (the future will happen anyway), letting go of our ideas of obligation & duty to save someone from their own life.

Simon says (:D): “I am definitely at the looking for a magical answer stage”

I think you and your dad have that in common. He’s also looking for a miracle that will save both his leg and his life. Can you blame him for wanting to keep both?

I think he has a way to go before he realizes there is no miracle cure and that his options are limited. But he has to travel that road to reach his conclusion. And you have to travel your road to reach yours.

It would be helpful if you all were on the same path.

Simon, is your dad actively getting acupuncture and bariatric treatments?

Medical doctors won't acknowledge the benefit of alternative treatment, they may help if your dad gets his blood sugar under control.

Sometimes we have to watch people make really bad choices for themselves, it doesn't mean we need to prop them up.

Tell him that you respect his body, his choice and you will do what you can to help. However, forsaking your life to prop him up isn't going to be realistic. So he needs to think about what his plans are if he waits to long.

Let him do whatever he wants and get some boundaries in place for yourself. Oh, your mom made her choice, so there are consequences that only she should have, you aren't obligated to pay for either of their choices.

Your sister is right, tell her that.

Simon, you said ‘We can’t do tough love’. It sounds like your sister can, it’s really ‘I can’t do tough love’. You have a ‘martyr mother’, and it sounds like you wish she could toughen up a bit. Do you want to be a martyr too?

If your problem is about the doctors and your frustration, have you thought through the comments about letting Dad make his own choice? Death from gangrene used to be appalling, but surely hospice can make it less distressing now? Perhaps check it out with them so that you are really clear about the end result of these options. A note, like I suggested before, but a bit more balanced about the choices. It might even give you a better chance to talk to Dad about them. My own mother chose death in a month rather than more painful treatment over a longer time, once she knew the facts.

Best wishes to you all, Margaret

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.

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 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.

Simon, if I recall, your parents have resources to hire transport and care.

Can't you and sis say " I can't take you to that appointment, I have one of my own that day". He can call a cab, yes? And hire an aide to go with him?