My diabetic father is not in agreement with doctors that his condition is too advanced and he needs amputation.
If he continues to refuse he eventually may not be able to ever walk again even with a prosthetic. My sister and I cannot keep taking him to wound clinics because he refuses to accept his condition. We are exhausted, fed up and I am feeling a combination of loss, depression, and deep anger. It's like wanting to cry but you can't.
It's been a few weeks but don't think he will ever accept it.
Thoughts, advice?
I am too depressed to get angry.
Has Dad understood fully that his decision means accepting death? Is he willing to consider hospice?
Or is he still in denial thinking the leg will be fine while doing nothing about it? Well
Meanwhile he thinks it's not a big deal for my sister or I to keep taking him to clinics to treat/debride the wound. His sugar and blood pressure levels remain high. I don't think realizes his foot problem is actually the least of his worries.
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.
He thinks doctors etc. are a joke and it's all a show.
2. My sister has hinted at stepping away if his attitude continues along the lines of "if you don't care, then we don't care either."
3. You and my sister are on the same page but I believe he would rather die than be told "what to do."
I am so depressed that this arrogant, I know best, #%&hole is my father.
He has upcoming medical appointments.
Just don't take him?
Does getting him to the wound clinic pose practical problems for you? - distance, time off work, simply getting him out of the house, for example? Or is it that the futility of it is frustrating and perhaps embarrassing?
The conversation between your father and his diabetic team, over time and the course of repeat appointments, goes like this: the wound will not heal. It will make you very sick. If we amputate the leg soon, you can have a prosthesis fitted and with therapy you will adjust to it and regain your mobility. If we do it as an emergency, the outlook won't be so positive. If at that stage you continue to refuse, ultimately it will kill you.
Because clinicians must not put undue pressure on patients to obtain their consent to treatment, they're not going to threaten him with certain death until it is a realistic prospect. So when they say "surgery or else" there is a limit to what they can tell him the "or else" is at this stage. What does your father believe it is? Has anyone had that conversation with him? He doesn't accept the recommended amputation, okay; but then what does he think the alternative will look like?
2. The trip to the wound clinic is hell especially now if doctors are saying we can't do anymore.
3. He is willing to get the amputation only if and when it becomes an emergency otherwise everything is "fine"
Keep multiple copies of it. When he argues, just hand him another copy. If he won’t change IT IS NOT YOUR FAULT.
Youre asking my sister and I to step back. That's a hard decision. And if we do, my 82 year old mother will not ever step back and she alone can't handle this.
The American Diabetes Association (I've only had a quick skim through a small selection of pages, mind) seems to accentuate the positive, and so you'd expect, but you might find articles and information that your father would pay more heed to. There are also sections for families and caregivers - worth a look, anyway, I hope.
I would also kindly suggest counselling for you & your sister. To accept that Dad will choose his fate - as awful as it may be.
You may even feel that you are starting the grieving process now - as keeping the leg or not, this could be the beginning of the end.
A friend went through similar with her Dad before I met her. He refused & refused. Finally, crises, hospital & accepted amputation. Could never self-care for himself again though & was forceable moved into NH to see out his remaining time. His memory clouded & faded, he regularly forgot he couldn't walk & sustained many falls.
His adult kids accepted he choose this fate. Accepted they could not save him from old age, diabetes or his own stubborness.
If me, I woupd try to have a very frank taking Doctor tell him how it is. They be equally frank & tell him, if he cannot look after himself, he must move into care. That I will visit but I am not his maid or nurse.
I do wish you an easier time that I suspect is ahead.
I get the impression that you think once your dad gets the surgery, gets prosthetic leg, and voila he can walk better again, then your life will be much better. You won't have all the appointments to take him to. No more stress. Yay!
Well, the reality might turn out to be very different.
What if he gets worse after the surgery. He for sure will have a lot of pain. He could develop infections, he might not learn to walk with a prosthetic leg, he might become even more disabled and end up in a wheelchair. There will be even MORE appointments for you to take him to.
Perhaps he would rather die soon from gangrene than chop off part of his body, just to waste away for years in pain and be confined to a wheelchair and be even more of a burden.
Can his surgeon guarantee success? Of course not.
If I were 82 y,o., I wouldn't go through with this.
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.
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.
How is your sister's mental health? Is it deteriorating quickly as yours seems to be?
I don't see it mentioned anywhere in your other posts about a therapist, although I could have missed it. ARE you seeing a therapist? And, if you are, are you discussing all of this with them? (I had to write the previous sentence because it seems that there are posters here who have been seeing therapists for a long time who never help them decide on courses of action.)
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?
We can't do the tough love route.
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.
He said to the dr
No amputation
He can fix this so he's not leaving it as is...he can fix this through acupuncture and a bariatric chamber.
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.
He told the Drs he can fix this himself.
I remind myself of my sister and mom as a reason to live.
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.
I feel frozen.
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
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.
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.
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.
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.
10 doctors, dozens of hospital and clinic visits and he thinks it's all a fuss and wants to go to limp around the supermarket for steak and pork bellies. The anger I have is indescribable.
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.
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".
I don't know how I'll survive this or what's going on (the world has gone completely nuts)
The comments this is not in your control and not your fault has actually helped a bit to separate myself from the situation as painful as it is.
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.
It's too much right now.
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.
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.
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.
There is no infection at the present time but nurses and doctors can't keep treating an open wound that won't heal where infection is a matter of time.
My father is not responding to advice including his brother who is a MD.
Yes, I think I need to also not forget mom. At 82 none of this is fair to her and that is killing me.
Our family including my sister are exhausted.
This will sound selfish but how do I reduce emotionally caring for him. He has never listened to doctors and I have so much anger towards him.
There aren't many options in terms of outcome and I am trying to somehow prepare myself mentally and emotionally. I'm just numb and things feel unreal,
scared to be perfectly honest.
Thanks everyone
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?
He is says he won't get an amputation.
No it's not my fault but I mentally emotionally can't handle anymore.
Plus another year of this global pandemic with masks and vaccines how is anyone sane.
I just pray my 82 yr old mom is ok because this guy doesn't seem to care about what he's doing to others. My sister and I have been doing our best but his attitude is really a burden on everyone.
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.
Two quotes come to mind. (Sorry if misquoted..)
'Lead, Follow or Get (outta the way)'
Simon's Father won't let medical advice lead, Simon or anybody lead him, Simon doesn't want to follow his Father's non-plan/denial plan so that really only leaves GET as his only option...
The other is the definition of insanity: doing the same thing over & over but expecting a different outcome.
Standing up for oneself IS hard, but it WILL make changes. The first thing it changes is your own mindset!
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.