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.
Stay hopeful and (((hugs))) from me.
They did a TEE today to check her heart because these infections often attack the heart, and they found she has early endocarditis.
Hopefully the antibiotics work quickly, but I’m honestly worried about how much she comes back from this. She’s still practically unresponsive. I’m going up to see her after work.
Long time, no real updates - which is good, I guess.
This new facility has been pretty good for Mom. In the last month or so, however, I’ve noticed a hefty decline in her awareness/mental acuity. In my visit last week, she was asking me how certain family members (who have been dead for several years) were doing. I’d tell her that they are no longer alive, and she would say, “I don’t know why I keep forgetting things.” She also has been moving so slowly in her bed and isn’t able to even shift her body or adjust in the bed.
Today, when I walked into her room, she just stared at me. I asked her if she knew who I was, and she just lightly nodded. I wasn’t fully convinced she even knew me. I sat there for about an hour, and she was just silent—almost mute. I asked her some questions, and she just stared at me. It was really eerie. It’s like someone had taken over my mother’s body. I brought her some food but ended up taking it home with me because she was so out of it, and I was worried she wouldn’t even realize it was there and would spoil.
It was so bad. I have a care meeting this week, and I’m going to bring it up with them. I wonder if she’s getting dementia at just 61 years old. I also wonder if it’s severe depression, and she just doesn’t care.
Is there anything specific I should ask, any tests? What I saw today really disturbed me. I don’t think it’s anything they’re doing wrong, but she’s just acting so out of character.
I think in that case, its only a matter of Moms paperwork changing hands. She will not lose her Medicaid.
Had our first care conference today. It went well. Mom is getting therapy 3-4x a week, which is great.
One thing I am a little worried about is since this is a different county, they had to alert Medicaid, as I expected. The admin at the NH said she was still “Medicaid pending” and I was wondering if there could be something wrong? I’m trying to think how one county could get it approved and another county would have issues or if nothing’s wrong and it just takes a while.
Just a thought.
Thank you, all, for listening to my rambling. I am just so happy that it seems to be a good fit for BOTH of us and not just me.
It’s uplifting and encouraging for others to see that there is hope.
Please continue to update us on your mom’s progress. It’s delightful to read about situations that work out for the best.
This was the best decision for you and your mom.
You placed a smile 😊 on my face with your post!
I went and saw Mom today and asked her how it’s been going, and she said she likes it so much more than the old one. The aids always come around and check to make sure she’s clean, one of them washed her hair the first night she was there, and she never has to wait long for anything.
When I was there today, I noticed how much happier the residents seemed. People were smiling, laughing, etc.
I told Mom that not everything might be perfect and that we have to be careful of our expectations, but I’m just happy that she seems to be happy and that things are going well. I have a really good feeling about this place, and I hope it stays that way. I’m just happy I got her into a place we both feel good about. I have felt uneasy for months about having her in the last NH and felt as if I was neglecting her and didn’t know what to do.
I always thought of my brother's ALF as nigh on to PERFECT and will be forever grateful for the care they gave him throughout his life. I still am in contact with a few of his "table mates" and see some I still know on the FB site for his place.
Every once in a while you run into a facility staffed by folks who make it their MISSION to do this loving care; I think it often starts from the top, and wow, are they rare as hen's teeth. I am so grateful you and mom have had such good luck in this; It has to be a tremendous relief for you. THanks for this good news update.
Thanks for your update.
You say in your update that your mother should not be left in a soiled diaper for over an hour.
I am sorry to have to tell you that your expectations in the regard are unrealistic.
You might do a little research online about how often is is expected a patient in care gets changed. To start you off there is this:
"Six to eight times a day
Nursing homes are required to change diapers on a regular basis123. However, there is no specific requirement for how often1. Elderly nursing home residents with urinary incontinence concerns will generally need a diaper change six to eight times a day24. A patient who defecates in their diaper should be changed as soon as possible, and it is best to check the diaper every two hours".
In life there are "should be expectations" and there is reality.
The nursing home, I am afraid, will soon tell you lovingly that they cannot meet your needs and you should perhaps consider a move for your mom.
After all that complication of moving I am afraid your expectations will still not be met without a private one on one aid. So I am just trying to prepare you for that. I am not saying what "Should be", only what is real.
I called Mom and asked her if she could remember to track the time from when she rings the nurse to when she actually gets changed and to text me. That way I can have concrete data. Again, I try not to take everything she says at face value, but having experienced the long wait times to get changed, I’m thinking she might not be exaggerating that much.
Anyway, I asked to start the transfer process, and I gave some names of facilities. We’ll see what comes back. I’m looking all over, but this whole thing is so frustrating. I’m just worried that I’ll go through this whole process of moving but then unknowingly move her to an even worse situation.
If you move your mum, after having researched the new care facility, as much as possible, then you will have done your best. There is nothing more you can do than your best. You're not a miracle worker!
Your mum is lucky to have you as her advocate.
Btw, if your mum starts berating you over not taking her home, again, my advice would be to not place any blame on either of you. I think that it won't serve any purpose. The relief it gives you by saying your feelings out loud are only temporary and could soon be replaced by guilt for upsetting your mum.
Instead, it's the doctors who are saying that your mum needs specialist round the clock care. It's on them.
Ultimately, you care too much for your mum to allow her to have inadequate care that could result in increased risk of infection. You should also care too much about yourself to become a full-time carer, losing your own health and quality of life in the process. You are your mum's daughter, not her nurse.
(I don't know the situation regarding your grandmother, but the same reasoning applies.)
I wish you all the best.
Mom has been adjusting well. It was rocky for a few months, but she’s used to the idea of being in a NH at this point.
I am a tad bit concerned about the facility, however. In several visits where I’ve been, she’s buzzed the nurses to come and change her, and they didn’t appear for quite a while (30 mins-an hour).
Mom told me that they missed her on shower day and when asked if she could still get a shower, they told her she’d have to wait until next week because they didn’t have time. I’m also concerned about the cleanliness of her room. It seems as if no one cleans it save for every two weeks or so.
It’s a tough spot for me because I know Mom isn’t the easiest and also doesn’t want to be there, but the fact that she’s asking me to switch her to a different NH rather than bring her home shows me that maybe something isn’t right at this facility. However, I know these facilities are short-staffed, and care might not be optimal at all times. From what I’ve researched, we have nicer facilities (supposedly) in our area that do accept Medicaid, but I have no idea how to start that process.
I have a meeting with her care team today, and I’m wondering if I should bring up the fact that I want to move her to a new home and if they can send referrals out? I don’t know where to start.
The "we have nicer facilities in the area that don't accept Medicaid" is always the norm and is always so disturbing to hear. I think of all the seniors out there trying to keep their money from the nursing homes and making all those IRREVOCABLE trusts ending up in Medicaid facilities so their kids can get their money, and always think so sad what they will face down, because in the good old military industrial complex it is always money that does the talking. Sad, but true.
I sure thank you for the update. I surely hope you can find good care, but given the fact the money isn't there for Medicaid facilities to the extent it is for private pay, this will be a real task for you.
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.