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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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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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jebs62 Sep 2023
This is excellent advice.
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Her body, her life, her decision. Just start making plans for the funeral.
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How very sad that at the very young age of only 60, your mother has given up on her life.
I would perhaps have the hospital set up some therapy sessions to figure out exactly what she really wants. Someone saying they just want die and actually being faced with that reality can often be two different things.
But if in fact she does want to just die, you yourself can set up hospice care for her, or you can ask her doctor to.
They will supply any needed equipment, supplies and medications all covered 100% under your mother's Medicare. They will also have a nurse come once a week to start to check her vitals and any wounds, and a CNA to come bathe her around twice a week, again all covered 100% under Medicare.
Now the fact that your mother is only 60 she may not be receiving Medicare yet, so I'm not sure then how that all works, unless her regular insurance just pays for it all.
I'm sorry that you have a mother who hasn't cared for herself and her family for a long time. To me it's very selfish and sad. She obviously has problems(mental and physical)that should have been addressed many many years ago. It may now however be too late. That is up to her. I would just honor whatever her wishes are AFTER she talks to a therapist.
I wish you God's peace in whatever she decides.
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dkiely33 Sep 2023
Re: "I'm sorry that you have a mother who hasn't cared for herself and her family for a long time. To me it's very selfish and sad. She obviously has problems (mental and physical) that should have been addressed many many years ago. "
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She said her mom was DEPRESSED before this so she didn't just neglect herself for the hell of it. Depression can be a severe motivation killer, and that could be one reason why she has ended up like this. Depression is a REAL illness that can lead to self-neglect. Please stop blaming the victim.
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I would ask her point blank, in the meantime meet with the social worker at the hospital they can direct you regarding hospice.

Seems rather cut and dried at this point, she is either not capable of caring for herself or won't.

Sending support your way.
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If these are her wishes as difficult as it is you have to support her.
First, if you do not have POA get it. It will be easier to make decisions for her if you need to.
Second, I would contact a Hospice and have her evaluated for Hospice.
You can call the Hospice you want or the Hospital can contact the Hospice rep that is probably there. (Many hospitals work with a particular Hospice, if you don't want that one youcan contact another)
Hospice will not only help your mom but help and support you as well. they take care of any and all that the patients designate as "family"
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Reply to Grandma1954
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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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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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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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"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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spccon Sep 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.
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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
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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
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If you are not her PoA and she is of "sound mind" then she gets to decide, not you. Does she have a Living Will (aka Advance Healthcare Directive, aka Five Wishes)? If not, maybe help her fill this out with her doctor. May you receive peace in your heart on this journey (((hugs)))
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Reply to Geaton777
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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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jebs62 Sep 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.
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If your mother is A/ O x3 and deemed cognitively appropriate by physicians to make her own decisions, then honor her decisions; it is called " patient rights". It of course hurts you or other family members perhaps to watch this, and others may feel they would make different decisions, but supporting her decisions and what she seems a quality of life ( or not), is the most loving compassionate thing to do.
If she chooses no further extensive care such as surgery and declines physicians suggested surgery then, definitely request hospice to come on board and assess her for admit to hospice care, which bty is not about dying but about quality of life for patient in midst of a life limiting illness and, also about support you, the family as you make the journey with her towards a peaceful EOL.
IF, she is not cognitively appropriate make decisions for herself, be sure that you have all POA documents in place in order to make decisions for her and, then make decisions based on what she has perhaps expressed as her wishes verbally or in Living Will documents etc.
Get emotional, spiritual support for yourself from hospice, or hospice chaplain or social worker or your faith of choice or other community, health care grief support. Practice self care. Have lots of help with her so you can have rest.
God's peace be with you all.
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Reply to janicemeyer18
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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
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I can't imagine your frustration and worry/sadness. I think she might benefit from engaging with a Geriatric Psychiatrist, introduction to Hospice/Palliative Care services and make some decisions about how to live and die with her progressive disease.

You could benefit from a therapist who can help you sort through your own issues with her life choices and teach you to set healthy boundaries.

Take an Elder Law Attorney up on the 1 hour free consultation to figure out what you need to do and, if necessary, sign Mom up for Medicaid.
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Reply to ConnieCaretaker
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I am so sorry you are going through this. It was very emotional for me to read about this, and I've never gone through it.

Our thoughts are with you.
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Reply to michelle7728
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spccon: This is deemed a medical emergency. However, she "has seem(ed) to given up on life." She may go into septic shock if nothing is done.
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Reply to Llamalover47
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As the few posts I read, BE THERE FOR HER. SUPPORT HER DECISION.
Hospice is good. They will keep her comfortable. Hospice is there for the both of you.
Please do not feel guilty. It's the worst thing you can do to yourself. Tell her that you love her, and it is ok.
My friend's mom, had rheumatoid arthritis. Doctor said it was causing her lungs to lose function, or something to that affect. She would need to be on a lung machine the rest of her life. She told the doctor no, and the family was shocked, but they understood it was her decision, and Mom did not want to place any burden on the family.. It was hard, but her decision, and that is ok.
I have my POA done. Everyone should get a POA.
POA forms can be found on government websites for your state. In my state it is. All you need is 2 eye witnesses to see you sign it, and they write their names and info on the form.. And of course it asks what you want, who is first POA, I have 3 people on mine in case something happens and the first doesn't want to deal with it, etc.
My FIL had cancer. He told his grandchild," These bodies are not made to last forever." He was right.
You are on the best website for all of this stuff. Filter through and absorb what you feel is right in your heart and for your situation.
I am sorry you are going through this. A lot of people do, you don't have to take this journey alone. Prayers are with you.
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Reply to MAYDAY
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I agree. Support her decision.
Do realize that Hospice ONLY / SOLELY offers 'comfort care.'
They do not do anything to support a person to heal or stay alive (no hospital or MD visits). Even if broken bones.

They will offer meds and support to keep her comfortable.

You call Hospice and they work together with you, the facility, and your mom.
Or the hospital social worker may assist and arrange a call - ask for whatever support you feel you want / need.

If your mom can't / doesn't take care of herself - to end up with another major serious health issue, you need to support her as best you can. You cannot 'make her' take care of herself.

Hospices are different in terms of management and attentiveness. Some are excellent; some are not. The hospital will likely tell you who they work with although you also may have options. If I were you, I'd read reviews as they differ so much. Depending on where you live, you may not have many or any options.

Do what is easiest for you.

The best way to support your mom is by reflective listening.
Not telling her what she could have / should have done ...
Be present with her (feelings) and reflect back to her what she says to you, i.e.,
"I hear you saying ... "I understand you feel ..."
This way of communicating will help her get her feelings out.

With the depression, see if medication is in order.
And Hospice may not continue meds - you need to check with them.

Gena / Touch Matters
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Reply to TouchMatters
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This is exactly what my sister and brother-in-law went through with his father... except he sliced off his own arm. Yep. And a friend's husband gave up like this, too. It feels like once you have uncontrolled diabetes that effect limbs, and the patient just doesn’t care anymore, you just have to let the inevitable happen because there’s really nothing you can do anymore. It’s very sad and very disturbing for those around them, but really, at this point they really do just want to get out of this life. And in some ways I don’t blame them, but what an awful way to end.
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Reply to MattyWelch
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If she has NF it may be terminal very quickly. There may not be time for hospice. As others have said, it sounds as f she is competent, so the best help you can give her, I believe, is to be supportive of her decision.
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OP has not been back since the 17th. I would hope that a decision has been made by now. I hope we get an update.
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AlvaDeer Sep 2023
I hope so as well. So many never return with updates; it's such a pleasure when people do so.
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Hi, all. OP here.

My mother ended up having several debridements that stopped the sepsis from progressing. She was released to a SNF for recovery and has been there for about two weeks, now. Things with her are relatively stable. Now I’m faced with the task of what happens to her now.

The SNF is not ready to discharge her, but I don’t know if I’m ready for her to be discharged ever. I struggle so much to take care of her. She requires so much care. When she was home the last time, she had so many falls even with how much support I was giving her. I feel as if home is unsafe for her even when I’m here. I can’t monitor her every movement. She can’t make it to the bathroom and soils her bed constantly. She called me crying on the phone earlier about how I’m going to end up leaving her at the nursing home, and I couldn’t really tell her that wasn’t going to happen because I’m not sure.

I love my mother, I truly do, but I feel as if home isn’t the place for her anymore. I’ve been in touch with the social worker and have expressed my concerns, and they’ll be in touch with me when the docs start discussing discharge. Mom is on Medicaid, so that hurdle is jumped.
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Llamalover47 Oct 2023
spccon: Thank you for your update.
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Hold your ground.

Repeat to them what you’ve already told us here.

Then, use the words, “unsafe discharge”. They will find a placement for your mother.

You need to protect your own health and sanity.

They can help you get hospice on board.

Best wishes to you!
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Reply to cxmoody
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You tell the SW now you can no longer take care of Mom like she is and there is no one else that can.

If Mom is getting Medicaid for health or in home, its not the same as Long-term care. I think "in home" criteria is similar to LTC, you have an income cap and an asset cap that she has met. Her home will be an exempt asset but her SS and any pension she receives will be needed for her care. There may be criteria u need to meet for LTC you didn't for "in home" care.
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I just talked with SW again earlier this afternoon. I said the same thing about unsafe discharge. They’re going to transition Mom to LTC once the doc decides she no longer needs PT. Her insurance pays for the LTC, and SW was super concerned about what I told her. It seems as if things are falling in place, but I’ve been let down before.

I feel terrible that I’m leaving her there, but as I said, there’s nothing I can do for her here.

The only thing I don’t get is if she wants to leave on her own accord, how does that work if she has nowhere to go, and I refuse to take her? Does that fall under the “unsafe discharge” umbrella? This makes me feel even worse because I feel as if I’m her only barrier to “freedom.”
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AlvaDeer Oct 2023
If she wants to leave on her own, let the SW know that she must be evaluated for competency, as she may be incompetent to make this decision on her own. If she is incompetent she will have not to be discharged as it would be unsafe. If she is competent to make this decision it is out of your hands and out of the hands of the SW as well; just see to it that you don't enable any of it as that would be truly negligent. She is unlikely to survive on her own out there; I think the SW likely understands that. As far as freedom, if someone is incompetent they are without protection; that is hardly freedom.
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It was hard for me to realize and come to peace with it when my mother’s caregiving needs far exceeded what could safely be accomplished in a home setting. The sadness of it, and her most definitely not wanting life in a nursing home, didn’t make it any less true though. Please don’t allow guilt to take over and drive your emotions and decisions. Your role shifts now as mom will need you to act as her advocate in her new setting. Don’t get trapped into conversations about coming home, they will only frustrate you both and serve no purpose. Advocate for her, visit her, take her small things that she enjoys, take her outdoors, hold her hand, get to know and befriend the staff. I wish you both peace in this new chapter
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spccon Oct 2023
Thank you for your supporting words. This part is going to be hard because my mother is very much the type to guilt and make me feel horrible for leaving her there. She wasn’t like that during my youth, but as she’s gotten older, she’s become more manipulative. I think it’s her way of making herself feel better about how poorly she’s taken care of herself.

I’m hoping as time goes on and she adapts that she gets past the anger, but I don’t know.
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Hi, all.

Just had a meeting with all members of her care team today. All are in agreement for LTC. Will be moving her to that part of the facility next week.

Part of the application the Medicaid nursing LTC care requires two years of bank statements and also proof that she sold her house back in 2019. Is this just to prove that she doesn’t have money stashed away somewhere?
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AlvaDeer Oct 2023
What a wonderful relief. So glad of this update!
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SPC Thanks so much for your update. So few think to do that for us.
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