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