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.
Its now time to let whatever she says roll off ur back. You have the option of walking out, staying away and not answering calls. Of course she won't be happy but that is her fault. But I would not rub it in. You made it clear all ready it was the choices she made that put her there not you. Now you become her advocate. You make sure she is getting the best care possible. Just don't expect too much. Her attitude and how she treats the staff will effect how she is treated. Its human nature. Nothing will be perfect. You can visit, take her little goodies and even listen to her complain.
I felt a big lift taken off my shoulders when Mom was placed in LTC with Medicaid paying. I allowed the NH to become payee for her SS and pension. So no worrying about making a payment every month. They handled her PNA. No more trying to find the best deals on Depends. Their residents were so clean I allowed the NH to do her laundry. If I had not had her house to sell and now paying her utilities for, it would have been perfect.
I’d suggest that you stop going. Or go in with a script about what to say, for a few minutes, and don’t give her the opportunity to chip in with stupid questions or with insults. Being eternally forgiving and always ‘nice’ gets pretty old, so just stop. She sees you, gets a kiss on the cheek, chat about what you have been doing, you leave it at that, and just leave.
Geaton is assuming that M has dementia, or 'memory and/or cognitive impairment', so the 'nice' is appropriate. In fact I don't think you've ever said that, just that she is a PIA who won't follow any instructions unless she feels like it. That doesn't leave much to forgive!
I was off work today and went to see Mom. It wasn’t a good day. She was asking about home and how long it would be until she could go home. We’ve been over this many times, and when I told her that it’s likely she won’t be coming home, she told me how disappointed she was in me and that she’d never thought I’d do this to her.
I chirped back, saying, “Well, I thought you’d take better care of yourself and listen to the doctors so that you didn’t end up with a missing leg and in a nursing home, but here we are.” She didn’t know what to say. After some time of sitting there in silence, she told me to leave.
That’s how it seems to go. We have good weeks where she seems positive and fine with being there, and then we have weeks like today where she’s angry. We have a care plan conference in two weeks, so I’m going to bring some stuff up to them. I’m worried about her depression and also her memory. She has told me a few times that she thinks people are trying to break into my house and hurt me (?) and I just sit there like “Where is this coming from?” She’s displayed some concerning mental symptoms the last few years, and it seems as if they’re getting worse. I don’t know if the facility can put in for some testing to be done, but it’s definitely concerning to me. I don’t know if it is just her being “out of it” from being away from home for so long or if something really is wrong. Ugh.
I learned a lot about caregiving and interacting with my LOs with dementia by watching Teepa Snow videos on YouTube. There is a lot to know and you'll get a lot of good strategies so that you can have more productive and peace conversations with her. You will learn that there is no point in correcting people with memory and cognitive impairment.
The only person who can change is you. Change how and what you say to her, and change your expectations of your visits and conversations. It's hard, since we're so used to talking to a person with normal cognitive and memory, and now... they're not that person anymore. It gets better the more you practice it.
Just wanted to provide another update. I just got the notice today that Mom was approved for LTC Medicaid. They reviewed everything, and she is eligible for the LTC services. Medicaid did their review last week and cross-checked all the bank statements and whatever, and everything checked out. What a huge relief! I didn’t have major concerns about it, but there’s that part of me that was still worried because not everything was “final.”
What a long journey it’s been. Thanks for being there to listen!
Just an update. Mom is still in the rehab section of the NH. NH referred us to Elder Guide to help with the Medicaid for LTC. Never heard of Elder Guide, but I guess their purpose is to get you approved for LTC services. The woman that called me had all of the paperwork and was just asking me to verify things and then told me that we didn’t need to worry. I’ve been nervous the last few weeks because I haven’t heard anything from anyone and was wondering if Medicaid was going to give us a hard time, but it seems as if everything’s going well. Fingers crossed we don’t have to deal with any issues. Once this goes through, I believe Mom will be moved to the LTC section of the NH.
Know they are appreciated and we think of you. Holding best thoughts for you for sure.
My friend died at 63 from complications from juvenile diabetes and that was a person that did what she was told. I know Mom watched her diet as a kid. In her 50s she had a heart attack. At 60 her leg amputated. It was kidney failure that killed her at 63. Mom is where she needs to be. You are doing the right thing.
So how is Grandmom doing? Must be hard on her too because she, at 82 and can't be expected to care for Mom while you work as a teacher. But she must feel bad too.
Just know that you did ABSOLUTELY THE RIGHT THING about being honest with her. If she asks to come to your home you will again have to be honest with her to tell her that won't work for you. That you love her and you will visit, but that isn't a possibility.
You didn't cause this.
You can't fix this.
This is WORTH grieving and your mother is in denial and is grieving about it.
Allow her that. Let her embrace the grief and you embrace your own, because that the correct G-word for all of this.
I am so very sorry.
I thank you so much for updating us. So few come back to let us know how things are going.
I am very glad that you will honor to the best of your ability your mother's choices regarding further amputation of not.
As far as "revisiting" getting a POA, if your Mom is not cooperative and is no incompetent in her own choices I would not bother to do this. You may be biting off a lot you would just as soon not chew on.
Sorry, again, to hear that Mom isn't thriving. As you say, some of us do have to take responsiblity for being non compliant in care; I do, however, as an RN need for you to know that the most COMPLIANT of patients suffer the same things your mom is suffering. Diabetes is very difficult to control, and often cannot be controlled enough that it doesn't take eyes, heart, kidneys, peripheral vascular and many other systems out despite BEST EFFORTS. That your Mom didn't do best efforts certainly did her no favor, but neither can fault be assigned to her for her current woes with any level of certainty that they would not have happened to her in best care cases.
Take good care of yourself. And again, I am sorry for your Mom and all she's going through.
Second, I say that she did this to herself because she did. I understand diabetes is a terrible disease, but she expedited it by not monitoring her blood sugar, refusing to take the right doses of insulin, etc. She also refused to see an endo. All of this is just a culmination of her neglect of herself. I tried my best to get her help to address the underlying issues as to why she wants things to be this way, but she’s refused.
I do not have POA, yet, but that’s something we need to revisit. I just found it odd that the NH never let me know she was going to the ER because they called me weeks ago to let me know she had a fall. It’s quite possible my mother told them not to contact me, but I’m not sure. I’m leaning towards they just didn’t contact me, and there’s no real reason as to why not.
Thank you for your recent update on your Mom.
Sorry to hear of this news.
You mention you understand that she did this to herself by neglect of her diabetes. I don't know the details of what you mean by that but I would blame this on the diabetes, not on your Mom. There is nothing that takes out the major systems as bad as diabetes, and infections, especially as we age often do not heal and re-infect. Those who require amputation OFTEN have to return for further surgeries and sometimes it seems like an inch at a time they lose their peripheral extremities.
As to your not being notified by either the hospital or your Mom's facility, to be honest I cannot remember if you are or are NOT Mom's medical POA. If you are, you need to correct the records for both entities.
I have been visiting Mom on Friday evenings, and yesterday while I was working, I kept getting texts from her healthcare provider saying her health record was updated. I know the nursing home has been doing weekly labs, so I figured that’s what was being updated. I kept getting texts, though, and thought “Hm, this is weird. I don’t normally get this many.” I logged into Mom’s health account, and I saw that she was admitted to the emergency room!
Didn't hear anything from NH or hospital yesterday, but I got a call from a surgeon at the hospital this afternoon. Mom’s knee is infected, again, and she will need to go under another series of debridements, per the surgeon. I asked him what the likelihood is of an amputation, and he said “Very likely.” I asked him how she got another infection, and he just said that her immune system is not strong, and it doesn’t take much for her to get another infection.
I feel bad for her because she can’t catch a break. I know she did this to herself by neglecting her diabetic care, but I still feel terribly for her. She used to be so strong and independent years ago, and she’s now a shell of her former self. Makes my heart ache.
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.