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My father had a foot ulcer that got complicated by a less than competent Dr. He had an amputation which healed but soon after an adjacent area got infected and that point the Dr. said he should have a below the knee amputation because he had osteomyelitis. He also said he would probably need to have the other leg amputated too. Father refused and said he would rather die and was adamant about not wanting to live anymore especially with no legs.
(My father is generally extremely sick and has been for the last 10 years, he has every possible D.M and smoking complication you can think of and after a recent hip replacement he was almost bed ridden but would sometimes be able to walk while assisted.)
Anyway it's been 2 months- he hasn't died and his condition has become increasingly poor. He slips in and out of consciousness and he is incredibly frail. I don't know what to do. Should I go ahead with the amputation despite his wishes? All the people I know with cases similar to my father's have needed to keep having amputations till eventually they died after several years with almost no legs.
I don't know what to do....Having him home slowly dying but not really dying is taking it's toll on me and I'm starting to feel guilty about not really pushing for an amputation when he refused it before everything got this bad. He has been on antibiotics and a special wound vacuum pump, his blood picture is getting much better, but his general health id getting worse
I can't even have a conversation with him anymore- it's like he's gone but he is still breathing. And today the whole room started smelling- I went to another Dr. today- he said give him two weeks or so to get stable and put him on more antibiotics because he is too sick for surgery at the moment. I think he is hoping he will just die in the meanwhile.
I am lost, frustrated, guilty, tired and depressed.

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I will tell you that with the amount of disease process your father has it is very unlikely that an amputation will do anything but cause the same problems he is having. There is little chance he can heal. I would not do it. Your father sould be in hospice and palliative care. He has asked you to do this, he has said that he wants to do this. Yes, gangrene and infection do have a dreadful odor. Cutting it off will keep the room odor free only until it reinfects which it almost certainly will do. Has anyone discussed in facility hospice and palliative care? Eventually all the infection will go systemic. At that point it will be very fast with organ shutdown of kidney, heart, lungs, etc. So sorry. This is a dreadful way to go. But I have seen over and over again the slow chopping off an inch at a time and it very seldom works because the systemic problems that are there are not allowing healing. This, but the way, is not a doctor's fault. I am so sorry for all you are going through, and for the pain and anquish for your father.
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Reply to AlvaDeer
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Have you asked if hospice services are appropriate at this point? If he truly wants no treatment, then Hospice is the answer.

I would also admit him to a skilled nursing facility where the hospice care can be accessed.
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Reply to BarbBrooklyn
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Why would you go against your father's pretty sound belief he does not want more intense medical intervention? To buy him a few more weeks or months of absolute hell?

The slow amputation of a diabetic's limbs is sickening and sad. I have a friend whose DH took 4 years to slowly, bit by bit, disappear. I don't know why he fought so hard to stay alive, it was no life at all--and in the end, his family has essentially deserted his wife (their mother) over this.

The smell is something you'll never forget....I don't know if it's gangrene or what. Please, for yourself and for dad's better QOL, move him to a FT care center and start thinking about Hospice or at least, palliative care. Sounds like he is really sick and miserable.
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Reply to Midkid58
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IMO your father needs to be in Hospice not in your home. My step father is almost at that stage. He will refuse amputation, he is 90, time to give up the fight, if allowed the doctors will keep chopping off his limbs...it is a big business.
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lealonnie1 Sep 29, 2019
100% agreed, great advice
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It would be terrible to wake up from hoping you would die only to find out that your clearly stated wish had been violated by the removal of your legs. There's a great book out about end of life decisions by Atul Gawande, "Being Mortal." It covers what actually happens when old people are given CPR, but most importantly, it covers what is actually important to people for their quality of life, and how that should be respected. For example, my husband says that if he gets dementia, to feed him chocolate ice cream (a treat he's not had in 10 years due to heart disease) and show him reruns of his favorite basket ball team winning the championship until he has a heart attack. He's serious and I am too.

Your dad is saying that his quality of life without his legs and with all his other health limitations is not good enough to go on. Does he have a formal Advance Directive or 5 Wishes form filled out? I would talk about his palliative care options to his doctor since dad is not doing better. Palliative care is for comfort with treatment, and hospice removes curative treatment but provides comfort care through death. It sounds like it's time for hospice.
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Reply to surprise
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Bronish - I can see that you're a believer.

Other believers don't need convincing. Non believers can't be convinced. Those who want to seek answers will find them when they are ready. You should not try to convert/convince anyone here. All you accomplish is turning off and annoying people.
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NeedHelpWithMom Sep 30, 2019
Good point, Polar. Respect all people. Respect all faiths. Not everyone is Christian. Accept diversity.

Funny this topic came up. I am Catholic but today I went to an Episcopalian service that honored the music of Bob Dylan. It was a great tribute to his music.

I saw Dylan in his hey day when I was 18 in Houston, TX of all places with my friends. Then again many years later at our jazz festival. I always said my mom’s hearing was bad due to old age and my hearing is not what it used to be from all of the cranked up albums I played and concerts that I went to! Also hearing tons of local music. I live in New Orleans. No shortage of music here.

Dylan’s music was played throughout the service. The guitarist actually recorded with Dylan and many other groups that I love. So it was great to see him again. The choir sang harmony beautifully. Anyway, it was great!

The pastor spoke about Dylan’s ‘spiritual life’ and how it was reflected in many of his songs. He said that Dylan never wanted to be labeled as any particular faith. He continued by saying, “Was he an Orthodox Jew or an evangelical Christian?”

It was determined that he was both at different times in his life and appreciated everyone and was very much like so many others searching for truth throughout life, like the Beatles did during their Bangladesh period.

Many of our churches have interfaith services as well and welcome our musicians because music can be a vital part of ministry.

Yes, there are traditional services too but I just felt like reminiscing with the music of my youth. The sermon was wonderful and so was the music. Our faith is very personal. We live in America and have the freedom to choose how we worship, or not to at all.
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Call hospice today. They will help you with whatever placement is needed for your dad or keeping him at home.

They will also help you. They will help you accept his decision and your upcoming journey to let go while he goes in grace.

Call them today. You are exhausted and confused about what to do next. Please let them help you.
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Reply to WifeNeedingHelp
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Oh for crying out loud Bronish!!! Shootmeplease is NOT going to hell and neither am I!!! Quit saying we default to hell!!!
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cherokeegrrl54 Sep 30, 2019
What bronish said is good ol patriarchal hell fire and brimstone fearmongering at its finest!! This is not the forum for this bronish....
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Ok, this might sound weird, but I'd be happy. Happy that he actually told you his wishes ahead of time, and trusted you to help things to happen the way he wants. So many people have no idea what their family members want, and you do, that is a blessing that you don't have to decide, the burden is off you. He made his own decision. Just be there for him. Try not to let the guilt and depression get in the way of your mission at this point: to make him feel loved and comfortable and to pass away on his own terms. It's all about him. You sound like a wonderful daughter, he is lucky to have you.
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Reply to SofiaAmirpoor
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I went to see my father yesterday. He arrested the night before and they intubated him. Seeing him there with one leg , intubated looking lifeless and unresponsive broke my heart. I just need to vent, because I have nobody to talk to. He's been very sick for the last 7 years- but there was always a teensy bit of hope that things might stay the same or at even get better. And although things kept getting worse at least there was hope. These last 6 months were especially hard, he had always kept a positive spirit and a pleasant demeanor through out this whole ordeal, but this last year he started to lose his patience and becoming extremely irritable, it coincided with him breaking his hip bone and needing a care taker. I don't think he coped well with needing the help. It seemed like every time he tried to get back on his feet something would knock him down. Soon after he become bed ridden and then the rest is history. It's funny how this last year- I feel like I was so numb towards a lot of what was happening in terms of the amputations and the mental changes. It all happened so fast, two amputations and early dementia all in a couple of months. I feel like it never fully sunk in. I started blocking out all of his old memories because it was just easier to cope with the sick version of my father as long as I didn't remember what he used to be like. Today when I saw him in the ICU on the ventilator, all I could remember was MY DAD. My happy father who loved to laugh and cook. My dad, who if he could, would move mountains for me. I remember all the advice he used to give me (and I would rarely take) and it just really hurt that I couldn't talk to him again. I remembered the last time I ever talked to him before his dementia kicked in- he was still positive and accepting. I also blame myself- it was just some diabetes ( and smoking)- how could it get so complicated. Maybe if I had gone to another Dr. the first amputation wouldn't have gotten so complicated. I was coping relatively well up until today but now I can't stop crying- I see my happy, pre-sickness Dad everywhere, I see his face, his laugh and can hear his voice too. I really miss him..... I miss my Dad and I feel so horrible that he has had to endure any of this. He has suffered so much, but the selfish part of me is glad he was there to see me get married ( even though he was too sick to walk me down the isle) and was there to see me first born too..
Life is hard. At the end of the day nothing is as important as family, nothing even comes close...
Thanks for all the support you guys have given me. I just really needed to vent because today has been a very hard day.
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AlvaDeer Oct 18, 2019
Oh, hon, so awfully awfully sorry. I hope that the rest of your family will come to peace to allow him his own peace now. You did all you could for your Dad and I hope you hold that safe in your heart. I am glad you see your pre sickness Dad everywhere. My own Dad has been gone many many years and I have never felt him absent from me. I think of things he said and did almost every day in one way or another. Hugs. I am so sorry. I hope your Dad will soon be at peace.
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