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’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.
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.
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. 😞
Our thoughts are with you.
See All Answers