My mother (60) has had bad complications with her uncontrolled diabetes for about two years, now. It started in 2021 when she had her toes on her right foot amputated, then her toes on her left needed amputated due to non-healing ulcer. Earlier this year, she needed a BKA on her right leg because she refused to properly care for her foot, and the infection then returned and spread up her leg. Now, several months later, she’s having complications with her left leg.

A doctor called me yesterday afternoon to let me know she has necrotizing fasciitis on her left leg that is extending all the way up her thigh, and he fears she might need an above-the-knee amputation on the left leg.

When my mother had her other amputation earlier this year, she told me she never wanted another one; she just wanted to let the next infection kill her. I haven’t had a chance to talk to her since her admission to the hospital (they said she’s been really “out of it” as one could imagine), but I would believe her thoughts are the same. She’s been severely depressed for several years and has seem to given up on life. I convinced her to get the last amputation, but I fear I did the wrong thing because she’s just been miserable ever since.

Now that it’s likely she’s facing another amputation that she’s likely going to refuse, what should I plan on doing? Is hospice care the way to go? Who sets that up? The hospital she’s in right now? I just feel at a loss and don’t know what to do at this point.

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My father’s dear coworker of many years became an avid fisherman after retirement. One day a fishing hook got embedded in his arm and was removed in the ER. Despite antibiotics a nasty infection took over, likely from whatever was in the water. He was told the only fix was to amputate the arm. He had a completely sound mind and was in no way depressed, but adamantly told every medical professional that he wasn’t losing his arm and fully understood it would cost his life. He was at peace with his choice and soon died. He had hospice services in his home and was kept comfortable until the end. Those in his life respected his decision. I’m sorry you’re likely facing this with your mother, it sounds like she long ago decided this, not just with this latest round. Hard as it may be, respect her choice though you’ll likely never fully understand it. Get all the help from hospice and hired caregivers you’ll need. I wish you both peace
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Reply to Daughterof1930

Your mother is 60, almost certainly legally competent from what you say, and has already said that “she just wanted to let the next infection kill her”. She has a long history of not controlling her problems, and you have not been successful in getting her to do better.

I’d suggest that you ask her again if she still wants to avoid surgery and let her problems kill her. Be blunt. This time it’s for real. If she says that she still wants this, you can’t force it. It would be a good idea to get appropriate witnesses, and perhaps to contact APS to let them know that you are giving up.

Ask her what you can do to help her make her remaining life as good as possible.
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Reply to MargaretMcKen
jebs62 Sep 21, 2023
This is excellent advice.
I had necrotizing fasciitis in my right hand that was traveling quickly up my arm. I can tell you that it was the worst pain imaginable. I was air-lifted to Duke University because I lived 4 hours by car away and would have died on the way and waswheeled directly into surgery. A nurse told me they would try to save as much as possible. I said cut it off. It was more pain than I felt in labor with 3 children even with constant morphine. It's likely that she is doped up must as much. I pray that she is. If you have POA, exercise it. I've been in a hospital room with my own mother for the past 7 days because she's been completely incoherent due to medications and pain. If you don't have a POA, then she can direct the doctors to do what she wants--and that's ok even if you disagree. Then you'll have to watch her die slowly which will be hell for you. You'll need support for that. If hospice is an option, take that. I think when she's completely incoherent, they will have to listen to you as her next of kin. If there's counseling for you, take that. If you can't be in the room with her, then give yourself permission to walk away for a time. Then create a document that says exactly what you want in a similar situation so that it doesn't happen to you. I'm a Christian who believes that God heals but understands that death is also a healing when it is a mercy. My prayers are with you and your mom.
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Reply to jebs62
jebs62 Sep 21, 2023
I should have added that you can ask for her case manager who will help you with your questions at the end of your request.
"Necrotizing fasciitis is a very serious condition, and complications — which can include sepsis, shock, and organ failure — are common. Even with treatment, as many as 1 in 3 people may die from the infection. However, an accurate, early diagnosis and rapid antibiotic treatment can stop this infection."

I would ask the doctor if its going to the hip, what will taking off part of her leg accomplish. Can they guarantee treatment will help. IMO it was not caught early enough if spreading like this. My daughters friend got this infection and eventually died from it, amputation did not stop the spread. Your Mom is not in a good place mentally. You have to want to live to be able to conquer this disease. If your Mom has not taken care of her diabetes, she could have a heart attack, her kidneys could fail. My GF, type 1, did everything right and died at 63 with kidney failure. Moms immune system is already compromised.

My GFs description of losing her leg was it was very painful. She needed a pain specialist. She felt it was still there. She had phantom pain. She lost her independence. Never could use her fake leg because of the sores it created.

If your Mom says No, then you will need to go along with her. Palliative care will not be enough. She will be in pain and will need what Hospice offers by way of Morphine.
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Reply to JoAnn29
spccon Sep 17, 2023
I’m sorry to hear about your GF.

Yes, my mother got her prosthetic leg for her BKA back in June, but she was only able to use it for a month before she developed a sore in that location.

She has been miserable since her BKA in January, and I feel bad because I kinda coaxed her into going through with it. She told me then that she didn’t want it, and I didn’t know better and used guilt to get her to do it. I should’ve just let her do what she wanted then.

I think hospice is definitely going to be the way to go with this if she chooses not to pursue any further amputations. Like you said, I’m also wondering how much an amputation will stop the spread. She had another debridement earlier today, and her blood work for today just came back. Her WBCs are even worse now. I’m just waiting for them to tell me that they want to do an amputation. I’m going to see her later, and it’s going to be a hard talk.
Nec fas needs immediate amputation because of the high mortality. Time to ask about a hospice consult. If mom is fully aware then she can choose and you can support her decision. If the doctor is reaching out to you, the pressure will be on you with the consequences. She might even need a nursing home after this
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Reply to MACinCT

My heart goes out to both you and your mother.

If your mother refuses the surgery after full disclosure, then I wouldn't try to override her decision and force her into more surgery and loss of limb.

The hospital can help you get set up with Hospice care.

IMO, health is wealth. It's so important to quality of life and when we no longer have our health for whatever reason, the prospect of dying isn't terrible.

I'm so sorry. 😞
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Reply to southiebella

Your mother may have made the decision not to go on with this, and it WILL go on, likely forever, a piece at a time. On the other hand, dying of necrotic infection is a wholly unpleasant way to go and it would be better, if she is determined to go, that she forgo further food and water (even minimal amounts of water keeps one going for months) and enters hospice. She needs to make her own decisions now after discussion with you and the doctor. I would support her in whatever decisions she makes as there really are no good decisions left to her. Please call in social services for support. I am so dreadfully sorry. Diabetes and the damage it does overall to the body inevitably shortens life so much. This is a great tragedy and again, I'm so sorry.
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Reply to AlvaDeer

Check out palliative care as well as hospice. And don’t agree to take her into your home. She needs to be where she can have 24/7 care by professionals.
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Reply to Fawnby

Get all the facts from her doctors: about her vascular (circulation) system in her legs, expected complications of her uncontrolled diabetes, if her infection wasn't treated... Also ask for consults to palliative care and hospice care while she is in the hospital. Talk with those healthcare professionals about allowing her infection to go "untreated" and what kinds of care she qualifies for through her insurance. Then, make the most compassionate decision for her - if and only if - she is not mentally competent to make decisions for herself.
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Reply to Taarna

I had Mom’s NH put in a referral to another NH last week (this NH has always been one of my top preferences), and we got lucky, and they had a bed for her. She moved in on Friday. I visited a few days this weekend, and I can already tell it’s going to be much better. The staff is very nice and attentive, the place is very clean, etc.

I went and saw Mom today and asked her how it’s been going, and she said she likes it so much more than the old one. The aids always come around and check to make sure she’s clean, one of them washed her hair the first night she was there, and she never has to wait long for anything.

When I was there today, I noticed how much happier the residents seemed. People were smiling, laughing, etc.

I told Mom that not everything might be perfect and that we have to be careful of our expectations, but I’m just happy that she seems to be happy and that things are going well. I have a really good feeling about this place, and I hope it stays that way. I’m just happy I got her into a place we both feel good about. I have felt uneasy for months about having her in the last NH and felt as if I was neglecting her and didn’t know what to do.
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Reply to spccon
AlvaDeer May 27, 2024
This is absolutely wonderful news.
I always thought of my brother's ALF as nigh on to PERFECT and will be forever grateful for the care they gave him throughout his life. I still am in contact with a few of his "table mates" and see some I still know on the FB site for his place.
Every once in a while you run into a facility staffed by folks who make it their MISSION to do this loving care; I think it often starts from the top, and wow, are they rare as hen's teeth. I am so grateful you and mom have had such good luck in this; It has to be a tremendous relief for you. THanks for this good news update.
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