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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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Panderson: I am so glad the burden of decision has been lifted from you. I admire your Mom for her courage and grace.
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What a terrible decision. I have a friend who had to make that decision for his wife who was much younger than 96. His wife didn't want her leg cut off but didn't want to die, either. The surgery seemed too terrible and he chose against it and his wife died. He feels terribly guilty, but knows he would have felt at least as bad if the surgery turned out badly or if his wife would have had to cope with her declining condition also minus a leg. There was no really good way to decide.

As someone else has pointed out, your Mother may have some health problems that have led to the poor circulation and gangrene.

Does she have the awareness and energy to make this decision for herself? If her dementia has progressed to where you need to make the decision, maybe it's best to "let nature take its course before anything worse happens"
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Ask your mother what she wants.
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Panderson: Thank you for your update. God bless you.💞
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Here it is:
Panderson
Oct 7, 2020
Mom decided to stick with hospice and not have the amputation. She was clear and firm with her choice. Thank goodness with hospice.
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Posters,

The original poster has said that her mom has decided not to have the amputation.
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My Mother told me that she does not want pieces chopped off of her. So in my case, I would not want the amputation. I would suggest posing a hypothetical and see what she says. Even with dementia they can still interact until the final stages (I believe). Surgery could be very hard on her. How do you explain her leg being gone? Are they going to put her in rehab? Fix her with a prosthetic? Best of luck with your decision. These are hard decisions to make.
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Imho, you write that "her overall [health?] is good." I am flummoxed if that is so with a gangrenous foot, traveling up her leg. As you know, this is a medical emergency since she is facing sepsis, quite possibly. Prayers sent.
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My dad got his right leg amputated below the knee when he was 84.
I did the impossible to save it, wanted to move him to another hospital, but he refused. It's been very, very tough for him. I'm not sure how a 96yo lady could survive both the surgery and rehabilitation. It's not easy. If you can avoid it, it would be better.

I understand it's a very tough decision cause we want to know we did the very best, sometimes the best is to surround them with love as much as we can.

Sending you strength, and a hug.
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I am a double leg amputee. I'm two years out and still struggling to cope. It affects one both physically and mentally. Even if only one leg is compromised, it is very difficult in the best of circumstances. Your mom made the right decision.
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Arwen31 avatar
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Arwen31 Oct 2020
You are a brave human being. Many blessings to you.
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Panderson How is Mom doing?
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I will say with my own experience, my mother had broke her leg and she already had severe bad circulation problems from her torso down and of course she broke the leg on the side with the worst circulation, she had cognitive impairment due to frequent UTIs but was still independent at 93yo. Active going to adult day care centers etc. One thing lead to another we did do the surgery where they put a pin in the leg to repair the broken bone, 1 week later it sent her into some kind of a weird heart attack, but wasn't, we still don't know what that was. Recovered fine. The next month the pin started poking out of her leg, so we did a surgery, which was a small one to remove the pin, so she only had 1 pin now. Then the next month started coming the ulcers in that leg where there were open wounds now, so back in the hospital she went to have a debridement when they c/n do anymore at the SNF. Back to SNF after that...now the ulcers became worse and that was due to the poor circulation and I tried everything to get blood flowing back to that leg in having massages and vibrating pillows and whatnot under the leg, that didn't work so she now went in for surgery to open those veins up in her leg which was kind of a big surgery at the vascular DR. Ulcers started healing but she ended up dying and we think why is because her body just could not handle the medications with surgery, the final surgery the DR said would be hard on her kidneys what they used even though she made it through the surgeries fine, but still things declined. Then came the part where things stopped healing and now she was diagnosed with osteomyelitis and the next option was to be that she would have to be on an IV bag for a certain term to heal that bone infection and if that didn't work they would have to cut her leg off. Thank god she declined enough that she actually started dying, even though I really didn't know she was till the wound DR told me so. But here I was going on and trying to fix everything as it happened all for nothing as she died. I know the position you are in now and I just kept chugging along trying to save her and didn't even think maybe I should just let her go. I kept going on like it was just the next step needed to fix things. In all, they really can't handle these big surgeries and your mother is older than mine was. I already had a 5 wishes which is like an advanced directive which is filled out when they are basically of sound mind to decide what they want to do, this is very important to fill out, but when all this was happening I didn't even think to look at that directive to see what she wanted, I just kept trying to fix things as they broke down. When I think back, I should have initially picked the option they gave where they could put a cast on her for about 6 months and she would stay in a SNF, it's a long time, but elders can't handle a surgery so that would have been the better option. No surgeries just the cast, and even then that would have been hard on her.
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marym11 Oct 2020
Manson. My mother was 91 and had dementia. She fell in the bathroom and broke her leg. She had to have surgery. She spent 7 days, alone in the hospital. That in it self is traumatic for a person with dementia. We couldn't find a nursing home close to home for her. I choose to have her brought to my house again. With hospice. (She had it before but it was just for her blood pressure and to make it easier, instead of taking her out and taking her to the doctor appointments.) In my mind I thought that she would have therapy and she would be fine even if she couldn't walk again. But I was told that she couldn't not handle the pain that involved with physical therapy. So different medicines were given to her to just make her comfortable before she passed. She rallied for a little time and lasted longer than hospice thought but in the end she died. Just quit eating and drinking. The medication was for her pain. When a person is that old they cannot handle surgery.
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If it were me, I wouldn’t want surgery. And the cost of the hospital bills - put me into hospice and make me comfortable. Hospice is exactly for this choice. Spend time reading and visiting her in hospice as much as often as possible. ❤️
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This sounds like another eventuality I need to cover in my own Advance Directive. For myself, I would say no. No surgeries, no amputations, no tube feeding. If I am at that point, just stop. Let me go home to the Lord.
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Jackie, you are amazing1 What a wise, sweet, and wonderful letter! I am 86 and I hope i will still have a wonderful well woring brain at your age1 God bless you and keep you.
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This decision is a tough one to make. My dad is 89, has severe dementia and Parkinson’s and has awful circulation in addition to a knee that
should be replaced. He is not a good candidate for
surgery, based on his age. The docs feel that he would be in more Discomfort post surgery and he would have an awful time healing. I personally would never encourage any surgery for my dad.
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disgustedtoo Oct 2020
My mother should have had that knee replacement YEARS before dementia kicked in. She would often massage them and say she should have it done, but she was in charge and never did anything about it. Later, after moving to MC, in her early 90s she had a bout of serious leg pain. Doc we had just Rxed a LOT of OTC pain meds (tylenol and ibuprofen - both hard on the kidneys!) I took her to ortho anyway, to find a way around all the OTCs, not for surgery. By the time we could get in to see this doc, she wasn't complaining of any pain. They took xrays and doc says to me that if she were 20 years younger, we'd be talking surgery. So clearly HE wasn't about to suggest it! I would have said no anyway. I suggested injection, to ward off any additional pain, so he agreed and did that. So far there's been no recurrence of pain, but she's also become wheelchair bound. She won't stand or walk, mainly from lack of use and partly from fear of falling (97 now.)

Mentioned it in another post/thread - I know that the paperwork to prepare for all the POAs, trusts, etc included a number of pages where different medical scenarios were listed along with choices for care. Oddly NONE of these were provided with the documents. What good are they in the atty's office? I knew neither parent wanted extensive treatment, so I was okay with saying NO surgery. More recently was a stroke. She was refusing transport to ER, so they called me. My final word was if they could convince her to go and have testing, fine, otherwise no and definitely NO hospitalization! Her final word was NO, so they brought in OT and PT to work with her with hopes to strengthen the right side, at least to help eating, and perhaps pivoting (she was already a 2 person transfer, OT reported at least once it was 3 person!)
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To Panderson: In 1971 my then 80 year old mother had an amputation of her right leg. The very next morning the left leg became gangrenous. It was a terrible ordeal and she passed away a day or so later.There was no hospice in those days. Your Mom at 96 may not make it through the surgery. Of course this is a heartbreaking decision you need to make since she seems to be in fairly good health for 96 and no other underlying problems. I am now 92 myself and I would not want to burden my family with the need to take care of me. Unless she or your family are of means to hire round the clock even in a long term facility. I would not want to undergo such major surgery. I would choose to die with dignity. Trust me your life and those of your siblings will be extremely difficult and your Mom would never want that to be the case.. Last November my husband aged 92 became ill and died within one 1 week in Hospice. I felt so guilty signing those papers. My 3 sons agreed that it was best. We were married for 72 years. I don't believe your Mom would live much longer after that operation. Take care of your own health. Remember your Mom as she was"whole "even before she started having dementia. Heaven would be my 1st choice over what could become a life of pain and suffering and total dependence on others. I wish you God speed. I assume your Mom was widowed. Let her go and be with him. I am crying as I type this.Don't feel guilty she will be in a better place. Love and prayers I hope you let us know how this turned out. Jacklynn
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Compassionate5 Oct 2020
This was beautifully said. Very Truthful and Comforting.
Jackie
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My grandmother at age 95 developed gangrene in her right lower leg. She had vericose veins stripped from that leg at a younger age. She was already residing in a nursing home. She decided she did not want lower leg amputation. Why? Because she had talked with other residents that had it done and they told her do not do it. - Too much pain they said. So she eventually went to hospice care in the same nursing home. She died peacefully. My mother and I spent her last day on earth with her. She was not conscious but we held her hands and spoke to her anyway. I do not know if it was the right choice but it was her choice. If your mother wishes hospice, go with it. It is her life. It is her choice.
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Isthisrealyreal Oct 2020
Her life, her choice.

I think that we forget that when we become caregivers to our elderly loved ones.

Thank you for the reminder.
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I wouldn't put her through that at her age. I'm 82, in good health accept for COPD, and wouldn't want to go through that. I'd rather go the Hospice route.
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Amputation. You will feel better afterward knowing you did everything you could.
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ToniFromRVA Oct 2020
It's not you that needs the comfort, it's the decision that the person needs to make or make the decision that the person would have wanted. Please everyone speak your wishes to your family & sign an Advance Directive so family won't have to make the decision.
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That was the situation for my Dad and we did hospice. Felt he would be in LTC, never be able to be mobile on his own if he had the amputation. And, no guarantee he would have made it through. He was 86, mod dementia, had fallen and fractured his hip 9 mo earlier and was significant care and could not be left alone. But he was at home. After the 2nd fall, surgery and gangrene - we had made the choice for hospice and then on a weekend, the physician on duty raised the question again - saying basically now or never for going to the hospital. It put us - more me - back in quandary. We did pray about it and I did ask my Dad. He didn't answer. In later talking with my Mom - she said she would want the same decision for herself if that was the choice.
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wow that is a tough decision.  Did your mother have any final directives to what should or shouldn't be done?  Do either you or your sister have POA to make those decisions? I am assuming she is diabetic since you mentioned poor circulation.  However if you let the gangrene go she will pass but be very sick (of course I am sure she will be given some meds to kill pain) but if you do the amputation depending on her healing ability, will it get worse and then need more amputation or will she heal well.  Has the doctors given you all the pros and cons of what could happen with either course of action taken?  Wishing you well in your decision.
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I look at quality of life, and go from there. Personally , I wouldn’t put her thru it....
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I would go for hospice
her quality of life won’t improve after the surgery
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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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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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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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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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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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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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