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 have been dealing with my mother’s illnesses since 2008 since I was a teenager. Since 13 years of age, I’ve always seen my mother in this up-and-down spiral and have always tried to support her. Things really got bad in 2018 when my father died of suicide. That was pretty much the nail in the coffin for her. 2021, it was some toes here and there, then 2023, it was the BKA. Now this other infection.
Mom called me yesterday and asked to come home. Had to go through that entire song-and-dance again. Sorry, not possible. You need to stay there. I don’t envision her ever being able to come back home. She’s been on this path of self-destruction for a long time.
Yes, you need to show house was sold and probably were the money went. Mom should have done no large gifting. The Statements will show money going in and out. Any large amounts you may need backup for. But under the circumstances, I think things will go well.
To get LTC Medicaid, one must be both medically and financially qualified. Most states require 5 years of bank statements and proof of assets.
Medicaid does a thorough review to make sure that no gifting or transfer of assets has taken place
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?
I’m hoping as time goes on and she adapts that she gets past the anger, but I don’t know.
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.”
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.
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!
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.
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
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.
Our thoughts are with you.
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.
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. 😞
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.
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.