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My two sisters and I have been working with our 96 year old mother and medical professionals to determine the best course of action going forward. My mom is facing a below knee amputation due to extremely poor circulation. Her foot is gangrenous and an immediate permanent decision has to be made. Either leg amputation or hospice. Mom has some dementia and lives in a long term care facility. Her over all is good with only high blood pressure. Mom was accepted by hospice but there is a lot of second guessing going on.

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Gut reaction..even with the amputation mom will probably be on Hospice.
There are many things that go into my reasoning.
Post anesthesia she will probably decline a bit and probably not "bounce back" to pre surgery cognition. (hopefully I am wrong about this)
She most likely will not participate in rehab so a prosthetic is highly unlikely.
There is no guarantee that she will have good circulation to the remaining lower portion of the leg and if that becomes compromised the same thing will happen. The big question then is will she be more comfortable after the amputation? And what is the prognosis if you opt not to have the surgery?
Not sure there is a perfect answer to this question.
I guess what would you want to do if this was you facing this decision?
I believe quality of life is more important than the quantity I personally would base my decision on that.
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Panderson Oct 2020
I agree and appreciate your comments
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Turning her over to hospice now means most certainly that the end is near and the family agrees on this, accepts that this is the case, and believes that this is what Mom would want. I certainly would want this myself, with PLENTY of the good meds to usher me out soon as I could go. However, you can also go the other way. I am certain the doctors have been honest with you about all the repercussions of surgery at this age under ANY circumstances, let alone on a lower extremity with poor circulation. The complications could be many. Those who are now thinking that surgery is a good option? Do they understand that this is gambling with the GOOD outcome being only more days of dementia, of pain? Do they believe this is a good quality of life, one they would themselves want? Are they willing to put on the line the extra pain, confusion and suffering for this gamble? If so, then perhaps only in the interest of there not being any of this end of life stuff for someone 96, where you hear "you wanted Mom to die", I guess I would go with the one insisting on this gamble; but I would have the doctor make clear all complications, including clots, increased confusion, pain, failure to heal, and etc. I would want to be certain that the one taking this chance understood what is more likely than not to happen.
What a difficult decision to have to make. You have my best wishes. I hope you will update us.
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Panderson Oct 2020
Your reply is exactly what my sisters and I agree upon. It’s mom questioning this. She originally agreed to hospice. I have set up a meeting with her nursing team for tomorrow to lay everything Out for her. Why do I feel like I’m playing God.
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What do you think your mother would want if she were in her right mind? Is she bedridden at this point? Her health may be good but what is her current quality of life? The problem with that type of amputation is, she’s going to come out of surgery bedridden if she isn’t already. Will the surgery improve her quality of life? I agree with Grandma1954. It sounds like she may end up on hospice either way. If I was in your shoes, I would only elect for surgery if there was at least an 80% chance it would improve her quality of life.
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Panderson Oct 2020
Thank you so much.you are asking the same questions I am. She is doing ok today and seems happy. I do not see how this surgery could approve upon that, but it is her decision. I have set up an appointment with her nursing team to discuss with her tomorrow
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Panderson, what does your mother want?   Does she understand the issue of amputation, of learning to walk with crutches or a walker, or even a prosthesis if it can be made for someone of her age? 

And importantly, is she diabetic? 

I don't know what I'd do if this were happening to my mother; I think it would be hard for her to cope and she'd be overwhelmed and depressed.  OTOH, my father would see it as a challenge.

I think a lot could depend on how your mother (a) views her life now (b) would view her life after an amputation and (c) how she could cope and recover.

And would she be able to continue to live in a long term care facility after surgery?
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Panderson Oct 2020
Mom is in a wheelchair now. This is her ultimate decision but she keeps going back and forth. Your answer was very helpful.
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I have no suggestions here. I'm just amazed a doctor would even think someone who is 96 could tolerate that kind of surgery and survive for an appreciable amount of time.

This is definitely a family decision. I wish you luck.
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Panderson Oct 2020
I spoke to the doctor two weeks ago and he confirmed he would not recommend the surgery. He is meeting w my mom tomorrow to answer her questions.
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Thank you so very much. Exactly what we are thinking
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Petite1 Oct 2020
Your Mom is a smart woman. I love the apple tree comparison. God bless you both. Mommy is home with me at 93 and having a tough time. I need her as much as she needs me. She is my heart.
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My mother was in her early 80's with some significant short-term memory loss when she had to have her foot amputated due to poor circulation. She had no significant health issues except she had always been very thin and frail. After the amputation she had some physical therapy (transfer chair to bed, etc) but because of the memory loss she really didn't know that she didn't have a foot and kept trying to get out of bed to go the the toilet. She never returned home after the surgery and went to a nursing home where they were unable to use restraints so someone had to be with her as much as possible to keep her from getting out of bed or out of the chair and falling. She didn't remember to ring for assistance and since she didn't have 24 hour eyes on supervision she fell a number of times. She had surgery in late October and was dead before Thanksgiving. None of the days in between were good ones. She really shut down after the amputation and seemed to will herself to die. I would have done anything to spare her those last few weeks.

I know this is a horrible decision to have to make. My parents were never given any option but amputation and there was talk of prosthetics and wheelchairs and normal life. None of that happened. Please have real hard discussions with the doctors about the reality of her prognosis if you make a decision to amputate. In my mother's case it only caused unnecessary pain.

I am so very sorry.
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Panderson Oct 2020
Thank you so much. I am meeting with her doctors and nursing team today and tomorrow. My mom has some dementia but had already made up her mind To not have the surgery and was accepted for hospice. Then other people got in her ear and made her question her decision. She said the funniest thing to my sister yesterday......if an apple tree has a bad limb they cut it off to save the tree.
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It sounds like it is a no win situation. This is heartbreaking to see. I can’t get past the fact that your mom is 96 and facing this dilemma!

My dad had heart surgery in his 80’s and I was scared to death. He actually made it through the surgery alright but while in ICU he suffered a stroke.

My mom blamed herself which broke my heart. She kept saying that she should have talked him out of it. I explained to mom that he would have died without the surgery due to his heart issues.

I asked the surgeon if this was his father would he want surgery done. He told me yes.

Daddy was scared having the surgery. He wanted to believe he would come through the surgery okay and he did.

He was never the same after his stroke. He died at 85 years old. He fought so hard. He did rehab, had home health, did speech, physical and occupational therapy.

Recovery is a long road for the elderly after a surgery.

I can’t imagine an elderly woman having this surgery. That would be horrific for her. The alternative is awful too.

I am so sorry that you and your family are going through this, especially your mom.

My mom has rotator cuff issues that would require surgery to help relieve her pain and her doctor has said that she would not recommend any surgery at her age for any reason. Mom will be 95 soon.

I can tell you that my mom couldn’t handle the surgery. She is suffering so much already with Parkinson’s disease. Even if the doctor would perform surgery she would not do it. Your mom has to answer according to her specific needs and how she feels about it.

What a horrible situation for her to be in. She may not want to deal with the aftermath. She may be afraid of not trying to go through with it. Oh my gosh, I will keep her in my prayers.

I fully realize that your mom’s situation is very different because it it a different situation but still surgeries at their age is a risk in itself.

Sending a bazillion hugs and prayers your way. I wish that you were not in horrible predicament. It’s incredibly sad.

I can’t imagine how your mom is feeling about this. God bless her.
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She's 96 years old. Why put her through a leg amputation? I wouldn't do that to my parent or any loved one. I believe putting her on hospice would be the right thing to do. Think about how you would feel if you were in the same situation?
What would you want?
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PAnderson, big hugs. YOU are nitnpkaying God. God is playing God

This is your mom making a decision if she hasn't been declared incompetent (this is EXACTLY) how my grandma died at the age of 92, almost 50 years ago, btw).

Surgery carries great risk at that age. She may not make it off the table, or be greatly diminished mentally, not to mention physically.

There is only the least bad choice, and it is a hard one to make.
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ok, here is my friend's true story:

She takes her mom to live with her son in another state. She flys with mom. They stay is a few days. Mom has an appointment with the new doctor. He says she needs surgery right away, We need to amputate the leg. No food, no water after midnight. Bring her in the morning.
They arrive on schedule: mom is around 86 years old. They need to prop mom for operation. Doctor says: she did not have anything to eat as we discussed: daughter says, well, mom was hungry, so I gave her a piece of dried toast.
Immediately, the doctor says, we need to cancel operation today.
The following morning, mom was in Heaven.
My friend was devastated. I said, no, your mom wanted to be with your dad. She is happy she didn't go through that operation. Thank God for the Dried Toast :)
Did you ask mom? 96 ?
Sometimes, it is not in our hands. It's not up to us.
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have real hard discussions with the doctors about the reality of her prognosis ....as JKM stated.

Then again my aunt had both legs removed... and the kid visiting his grandma would comment on the lady with no legs. The next day she asked the salon to dye her hair purple. From then on, the kid talked about the lady with purple hair. :-)
She has since passed, as these bodies are meant to do sometime in our lives..
We do not last forever.
and surgeons like what they do, they like to operate...some of them, or less of them depends on the doctor...
one split another aunt from abdomen to pelvis... OH I am sorry, Cancer is all over your insides, gonna sew you up, and good luck. seriously, no laproscopy? small incision to look and see what is going on? you have to split her like a chicken and say oops? nothing I can do? NOW, WITH CANCER, TRY TO HEAL THIS HUGE GAPING SLICE ! Well, that took much energy...
as I said, and my FIL told me ,yes, he had cancer too, as did most of my relatives, These bodies, .. are made to last ."
hope you use your time wisely..
THESE TIMES,::: BE NICE: BE PATIENT: BE PATIENT,,, BE CARING...

SMILE: SMILE;; SMILE:; These times, no body is looking at your teeth: they are hidden BEHIND THE MASKS THAT KEEP US GOING A LITTLE BIT LONGER.

STAY HEALTHY, HAPPY, AND FIND JOY... FIND JOY... LAUGH :) Tell a fun story, compliment someone today. on anything... their voice, their eyes, their SMILE :)
laugh a ,little. I do at myself,,, nobody really laughs with me...
tell someone in line something fun, something they really need or don't need to know... a little history about a place you visited or a moment in your life.
when I was little, every night, I would see the JOLLY GREEN GIANT = LAUGHING AT ME: YOU Know the commercial ::: HO HO HO Yup that guy was real to me... saw the shadow of the leaves bouncing off the walls in my room. My brothers finally got tired of the nightly routines. They talked with an old fisherman at the pier who had a magical fishing weight THAT would keep the scary jolly green giant away.. they story was very long fun and magical. they hung it up for me. And then my big brother gave me this awesome poster,,, from the 60's (of course :) of big beautiful day glow butterflies... !!! I finally had it professionally framed. They said they couldn't do it, it was an original... It was tearing from many years and I wanted to keep it... I lost the magical weight over the years, but I still have the memory... Now one is gone as my brother, and the other just flutters by.. I don't hear from him anymore either... but I still have the fond memory..I will never forget. I still have the poster. thank you for listening.
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Personally, I would rather die with care from hospice rather than die with the agony of post surgery pain. It isn’t my decision to make. It’s your family’s decision and a very tough call. This is a horrible situation to be in. I’m so sorry that you are struggling with this.

In some cases pain meds don’t even work well enough to reduce the pain. The best they can do is dull it, take the edge off.

Years ago, I dated someone that had an amputation due to gangrene. He had a horrible motorcycle accident. His pain was horrific. The meds barely made a dent.

Years later, I had a terrible accident, not with a motorcycle, I was on a bicycle and I suffered a horrible open compound fracture. Same for me, meds hardly helped at all. When I asked my orthopedic surgeon about it, he said that meds would not remove the pain, it would only dull it. I did not have to have my arm removed like my former boyfriend. It was heartbreaking for him.

Wishing your family peace in making a very tough decision.
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Panderson, I hope you will update us after Mom's appointment. Please make it crystal clear to this person that you want as honest a prognosis as they can give you and your Mom.
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Panderson, I hope your meetings today and tomorrow help guide you to the best decision under the circumstances.  It certainly is a challenging situation requiring a difficult choice.   From what you've written, I know you'll consider the options rationally, thinking first of your mother.

I hope you can find peace as you go through the next steps of your mother's life.
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Prayers for wisdom and peace whatever is decided! 🥰🙏🏻🥰🙏🏻🥰
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Panderson, thank you so much for the update. I'm glad that your mom is at peace with her decision.

People are not trees.
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At her age, she made the right decision. I am sure that you are relieved. This is really good news to hear.

I sincerely hope that your mom’s remaining days are lived out as peacefully as possible. Hospice is the best choice.
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Finure out how much time she would have if you didn't amputate.

What are her chances of dying on the operating table?

Present your answers to your mom and see what she thinks.

My Dad is 96 and I think he is too old for an operation but I would ask my Dad what he wanted
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angustia1234 Oct 2020
Eeven he has dementia you will ask him?
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Well, you don't get circulation poor enough to cause gangrenous foot for no reason. So I'm a bit puzzled at the description that her overall [health?] is good with "only high blood pressure."

Who is doing the second-guessing?

I'd suggest that you take a big piece of paper, divide it into two columns, head one column "amputation" and the other "comfort care only", and below the headings list what her doctors advise is to be expected in either case.

Then you can compare the choices side by side. I'm very sorry that you're having to make this almost impossible decision on your mother's behalf, and I hope that the family will support one another whatever the decision is.
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How is amputatation an "option"? Gangrenus tissue has to go. It's not going to get better. It will only spread. Does hospice think they can keep her dead leg back to life? If they can, there's a Nobel Prize in medicine in their future, or positions at Hogwarts.
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Worriedspouse Oct 2020
I understand what you are saying, but the point of hospice is not nursing anyone back to good health. It’s comfort care for dying.
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At 96+, her condition(s) of poor circulation, dementia & gangrene, sounds like there is a bigger heart condition here, there are doctors that would put her under to perform that amputation ? Any other issues of organ failure(s), relatively milder heart attack(s)/stroke(s) ?
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My FIL had extremely poor circulation and experienced an infection from an ingrown toenail and developed gangrene. The doctors were hesitant to amputate, but because he was only 62, went forward with a below the knee amputation. But, because of his circulatory issues, it would not heal and developed another infection. They did a second surgery, above the knee. Two days after the second surgery, he had a heart attack and passed.
i know this s a difficult decision for your family but my suggestion would be to opt for hospice. Surgery and recovery is going to be extremely traumatic for her at 96.
No matter what your decision, my prayers are with you.
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Very similar story, I had an aunt who was bedridden in a NH, who had a leg amputated in her late 80's due to gangrene. She died 3 days afterward. I think the anesthesia and pain were VERY difficult on her and she gave up. She also had mild dementia.
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Very similar here, too...they decided because of her age, that amputation would be worse than better, so she was put into hospice. She died 5 days later...had she had the amputation..who knows what would have happened between her dementia, and her health.
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WolfeyKat62 Oct 2020
Last summer the surgeon called me about another operation on my husband's foot where they had already amputated his large toe which had become infected in October. The surgeon wanted to remove one joint at a time and keep the money flowing for him and the hospital. I got a call from another doctor telling me DH would not survive the operation due to his heart. When the surgeon called me again about the next operation, I told him no. He got very upset and told me to put him in hospice or come and pick my husband up. He had me in tears the way he spoke to me on the phone. My DH was finally taken back to the rehab/NH by ambulance. I now have DNR in place plus hospice care in the NH. Pure greed on the hospital and that particular surgeon, is what I believe. Why keep operating on someone that is half or more dead already? I'm sorry this happened to your family.
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If she doesn't lose the leg, she will doe, If she has an amputation, she will need adjustments in her lifestyle - probably a wheelchair and help with transfers. There are multiple ways to anesthetize: general anesthesia, nerve blocks, spinal anesthesia... She could receive medications to help her relax during surgery so she wouldn't have to "go under." Please have her checked by a cardiologist as well as having her kidney function, liver function, and respiratory function checked well by her primary care doctor. If either doctor considers her too great a surgical risk, you have your answer.
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Rock and hard place! Sorry to hear. At 96, hospitals won’t amputate even if your mom was mentally sound. My dad was 90 and sharp like a 25 yrs old guy. But the hospital would not operate on his hernia because it would kill him on the operating table. He went into hospice and died a month later.
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You need to ask her surgeon questions and your mother. "Mild dementia" does not mean they do not know what is going on.
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My Mom fell and had surgery. Her deterioration from the fall to now is significant. The anesthesia took the dementia to another level. Her geriatric specialist in his experience with dementia patients and surgery says its 6 months from surgery to death. But she wasn't going to walk again and she was in extreme pain. So we opted for surgery. Surgery was January.
She went into at home hospice in July. We are now in Oct she is close to death. I cannot tell you if I would do the same thing again. Shes 90.
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Panderson, God bless you, your mother and sisters. My mom is 95 1/2. Nothing further I can add after reading all the other responses. Just wanted to say I, too, am thinking of you all and wish you peace and comfort.
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