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.
While I understand you feel like you cannot speak with your siblings, I would encourage you to ask the hospital staff if there are volunteers or grief councilors available for you. I'm betting there are. Don't forget your uncle, he may need to talk as much as you do.
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.
Great big hugs to you!
I am also so very sorry. As this will not be the end of this. Were I you I would back away, and leave it to them now. I would visit him all I could. It is tragic that this was their choice for him, but I realize that they love him as well. So sorry to hear all you are going through, and him as well.
He amputated one leg, below the knee, he's awake but he still goes in and out of consciousness much like before, he keeps asking to go home and asks everyone to stop torturing him. My brother and sister are foolishly proud of themselves. He doesn't even know about the leg yet....I have no idea how he is going to take it.
If his consciousness get better, I will get everything in writing in regards the amputation and dialysis and ask him to make me his POA.
So sorry for your sad and challenging situation.
I understand not stopping the treatment that is keeping him alive. Try to talk to him in a lucid moment about his situation. Maybe he can help you know what he wants.
On a different note, try to ignore your siblings nastiness. I can't help but feel indignant when siblings start in on the caregiver, really, where were you when these decisions needed to be made? How dare anyone make it harder on the person that cared enough to be there through it all and have to make difficult decisions without the care and assistance.
You are doing the best you can, you are honoring your dads wishes and you should not feel guilty about anything that has transpired. It is a difficult place to be, no one wants to be the one carrying out wishes that you wish were different. It takes true strength to deal with that.
Hugs! You are his hero!
Can you ask him at this point if he would like to stop all treatment and seek comfort care? Maybe he doesn't understand that he can stop treatment and seek comfort and that it is okay if that is what he wants.
I can't imagine how hard this is for you. Great big warm hug.
I am sure he would be eligible and if so you would get more help with/for him
They will also support you emotionally.
I would not do any surgery. There is a good possibility that he would not survive the surgery or if he did may not survive the recovery.
The goal with Hospice would be to keep him comfortable.
You would also get equipment and supplies that would make caring for him easier.
((hugs)) to you. Stay strong.
My dad had osteosarcoma in his leg ( age 86 ) and refused treatment and definitely refused amputation. Both were good calls for him. The osteosarcoma was brutal and he was ready to go and wanted to speed it up - he mentioned he wanted to die sooner a lot. His best friend ( a doctor ) told him if he wanted to pass sooner he could refuse food and water. My dad followed through on that, though of course he was offered food and water continuously and Dad chose when and if he wanted to drink and snack. These were better choices for my Dad and I'm glad he made them.
Every situation must be weighed differently. I'm sending you a HUGE hug as you go thought this terrible time.
Heres the thing, no one here gets to tell anyone else how they get to be supportive. I know many of you try and you attack others that dare speak their own truths or hearts. It's sickening that people want to jump down someone's throat for daring to not follow the herd. She is entitled to help in the way she knows how and you are entitled to ignore it.
I don't know if I am going to hell, I believe that I serve a just God and if I do go to hell, yet I will trust Him because He decided that was to be my final destination.
Yes, elaine, I believe that thisisrealyreal that Jesus died to safe me from my sins and if I ignore His provided way then I will be eternally separated from my God and to me that would be hell.
This isn't about religion, this is about free speech, so let it go and accept that she chooses to tell others her beliefs in a way that you don't agree with. It is okay, we don't have to agree.
Thanks for all your advice, you have no idea how much it helped. All the people around me keep telling me that I have to do the amputation to save his life with no regard to what the quality of that life is.
I guess they think if he doesn’t do everything possible to save his “life” then he is sinning by killing himself. Which I find ridiculous.
I’ve seen my father be very patient through his slow but steady decline in health for the last 10 years- hospitals, ERs, pain, procedures, surgeries, complications, dialysis and so much more. I guess he had to draw the line somewhere and amputating both legs is reasonable place.
I would get evaluated for hospice. Does he have a living will? Does he ever become awake and with it enough for you to discuss dialysis, etc.?
When my sister was dying of breast cancer we were told to place kitty litter under her bed to help absorb some of the odor. Death is a vile smelling process.
Do you have anyone to help you through this difficult time? Have you gotten hospice on board? If not please do that right away. They can be such a blessing to help you understand what is going on and keep your dad relatively pain free. Utilize everything they have to offer.
Has any doctor really covered the prognosis with you guys? Sometimes we need to get a second or third opinion to understand what the chances of a good outcome are. However, if you believe that your dad is ready to go, no amount of intervention will change the outcome, because at the end of the day he needs to want to get better if medical science offers a real chance, otherwise he will be angry and still want to go. Only you know what has been said and how he would respond to a real chance without legs. I would make sure it is a real chance and not a surgeon that wants to perform this type of procedure.
My 57 year old friend had part of her toe, then part of her foot, then more toes and that vacuum treatment, she was in unbelievable misery the last 6 weeks of her life. She ended up with MRSA and c-diff from the antibiotics. It was one of the saddest things I have ever witnessed and I wouldn't wish her end on any soul. I don't think I would let them cut off my body parts without some compelling evidence that I would not be worse off afterwards.
I pray that you have help and that your dad can get some relief from the suffering. Hugs and strength to you. 🤗
Our story flies in the face of what everyone else here is saying. Your user name reminds me of my feelings taking care of my dad when he had gangrene. My dad had the complications of not caring for his diabetes for many years when this happened to him - kidney failure (hemodialysis 3 times a week), obese, etc., with infections in both feet (made worse by incompetence too). The worst leg he was told he could 'live with' for another 1 1/2 to 2 years. No way! I watched him get painful treatments to promote healing on feet with no blood supply, with the promise that hyperbaric oxygen treatments (HBO) would help his already dead feet - once he got to the top of their waiting list! We waited, went in & out of hospitals & rehabs (no help), & finally dad went home. He told me then that he was ready to die and he had a little talk with me about how he'd had a good life, etc. Then he went completely septic (infection travels from the wounds throughout your body). From what I saw, sepsis is painful. So I did what I thought should've been done all along - took him to the hospital for amputation below the knee. We were in an area with very poor healthcare (FL), but since sepsis can kill quickly, we couldn't move him to my state yet. They amputated the worse leg and he improved dramatically! Because the healthcare there was so bad he did develop an infection just above his knee - which was completely healed with a good wound care specialist & hyperbaric oxygen treatments once we moved him out of Florida! The other amputation came 6 months later, in a hospital where I live. No additional infection problems then at all.
And since that time, even on dialysis & with all his other health problems, he's already had 3 good years. I don't have to ask him if he'd do it all again - I know he would!
He hasn't learned to do much more than use his prosthetic legs to walk short distances with a walker and to 'transfer' (wheelchair or powerchair to say, the toilet or bed). That's probably due to my dad's advanced age and other diseases. But he learned how to drive a handicapped auto and has gone on vacations.
(I know, you're having trouble imagining your dad going anywhere right now, so was I before his infections cleared.) He's made friends, which is something he was never good at before. His life changed for the better in many ways, but if I'd 'respected his decision' he wouldn't have had a chance & he was in great pain.
I know, I'm about to be ripped on this site for not 'accepting his decision,' but so be it. His 'decision' was born out of pain and depression, & I knew that. I'm very much like my dad, although we hadn't been close (until now). I don't know how you know what the best thing to do for YOUR dad is. I had to go deep inside myself to find the answer and think "what would dad do if he wasn't depressed & in pain, unable to visualize his future without legs," and use all the knowledge I had been able to find on his medical problems to come to this choice. He'd said he was ready to die, but I came to a different conclusion.
It sounds like your father's doctors are just letting him 'rot' (sorry, no other words describe, I know)? Is that because he's stubborn about being amputated? To avoid a situation where your dad ends up amputated again & again you need a GOOD doctor to determine how high up he needs to be amputated. They CAN determine where there is good blood flow before they do surgery, but they'll warn you that if they are in surgery & find they need to go higher, they will. We didn't know if my dad would have any legs left because his was so bad. Diabetics & smokers lose that blood flow & there's no permanent way to bring it back.
The only way you'll ever have a guarantee of the outcome is to do nothing. Then he'll will eventually die. I understand you are stressed & exhausted because I've been there. I think you can private message me here, and I'll give you my number even if you just need to vent. Sending hugs!
My sister came to visit the other day, she's been living in Australia. When he saw her he started talking to her but then slipped out of consciousness and then woke up again talked a little and then slipped out again. It was extremely sad, it's like he woke up just for her. I don't think I've stopped crying since. I could see my sister looking at me in disappointment and she later said that the amputation had to be done at least a month ago, she blamed me for trying to abide by his wishes. I don't know who is the selfish one, me or her.
He's actually done a re-vascularization for his left leg which went very well, the blood flow is great. The Dr. refused to do the other leg at the same time and said we should do it in a month. I later learnt that this wasn't regular practice and what he did was mainly about getting more money. Anyway, his initial would healed. But then he got a fever and I kept telling the Dr.'s he has a fever and he must have an infection, he said the leg was fine. Later it was discovered that there was a huge pocket of pus that reached the bone. I don't know if not enough infected bone was removed or the vacuum was placed in a faulty way because it started leaking Now this was one of the top Drs. in the field.
He hasn't been left to rot, he is on antibiotics, hyperbaric O2 and a special vacuum wound therapy for infections which is costing me a lot. His leg looks a lot better-but his general condition is worse. His Dr. was trying to save his life and legs...which at this point doesn't seem possible.
My father was bed ridden after breaking his hip, he wasn't doing well in physiotherapy. It was a struggle to get him to do even the simplest exercises, upper or lower body. He didn't seem motivated enough. I doubt he will do anything with prosthetic legs either. He is very weak and cachectic, He has early onset dementia. He was extremely depressed and rightfully so. No medications/ therapy has helped with this and there were too many complications from the meds. His quality of life was extremely poor even before the infections. It would be nice to be able to talk to him again and to have him there- but I don't think he feels the same.
I appreciate you sharing your experience. I hope I make the right decision or at least one that I can live with.
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.
Keep him comfortable and come to terms with it. Talk to a therapist if you need to. I had a friend who had an amputation (only in her 50s) and she died about 2 months later.
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.
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.
They will be able to keep him pain free, for the most part, keep him cleaned up, and they will take a load off your shoulders by being an excellent support system to you....and, after he passes, hospice offers grief group meetings that are supportive and non judgemental.
Only in Jesus Christ, the Son of the Living God, can you be saved.
Believe and give your soul to Him who made you and loves you! And your father too....Do it ASAP also, before it's too late!
I tell you this in love....ok. Shalom. 🌺🕊🌺
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.