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SP, great update!

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
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You are lucky, 2 yrs of bank statements, my state requires five.

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.
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Thank you, all, for the support. I’m sorry it took me a while to get back with an update. For a hot minute there, there really wasn’t anything to report. It was all pretty much a waiting game until the meeting with the care team.

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.
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Llamalover47 Oct 2023
spccon: Thank you for your update.
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Hi, all. Another update here.

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.
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CaringinVA Nov 2023
I’m so sorry. It’s hard to watch your mom suffer like that. Praying for your peace and for relief for your mother.
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Is Mom on hospice? Will she agree to the amputation? If not, I would not push it. Especially if she understands that she will die if she doesn't get it.
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spccon,

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.
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For the record, as far as I know from the last time she was in the hospital, she is strongly against an amputation. I am not fighting that. I respect her decision and will reiterate with the surgeon if it comes to that.

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.
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You say you are not POA. You would not, in that case, without Mother asking you be notified, be notified by either the hospital or the Nursing Home unless you made some prior arrangements for that.

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.
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ElizabethAR37 Nov 2023
Wouldn't this be a time to consider palliative care and/or hospice for Mom? It certainly would be for me--and I hope for my medical POA if I were unable to speak for myself. It sounds to me like Mom's situation involves an increasing dose of pain and misery.
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Mom has been back in the NH for about three weeks, now. She called me today and said I’m the reason she can’t come home because I told the social worker that I couldn’t take care of her. She said they won’t let her go because it’s unsafe. She was crying and sounded so helpless. I felt horrible. I told her they were right and that she needs the constant care that I can’t give, and she is adamant that she doesn’t need any help. I told her, “You can’t walk or get to the bathroom!” She just doesn’t get it.
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AlvaDeer Dec 21, 2023
No. She doesn't get it. And you need to stop expecting her to.
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.
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OP did she get that second amputation? The guilt is the hardest part to deal with regarding not doing what mom wants. Stay strong. You have to have a balance regarding what is good for mom - facility and what is good for you too - keeping mom in said facility. What mom needs and what she wants are two different things.
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spccon Dec 22, 2023
She has not received a second amputation. They were able to cure the infection with several debridements. The surgeon at her most recent check-up said her wound is healing nicely, and I know it’s only that way because she’s being monitored in the NH. If she was back at home, her knee would’ve already been infected again.
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Sp, OP has been updating on Mom, some as replies since Oct 16 and into Nov. Your answers are there.
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So sorry you have to go thru this. Its heart wrenching. I did go back and read your updates. Seems the LTC was in agreement that Mom needs to be where she is. And yes Mom, you have allowed your diabetes to go on so long untreated tgst no I can't possibly take care of you. I am not a Nurse or an aide both you need to do the care you need. Tell her wounds caused by diabetes needs to be cared for by a Wound care nurse who knows what to look for. You are not such a nurse.

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.
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spccon Dec 22, 2023
Grandmother is okay. She feels badly about it, too, but she was so tired of having to care for her daughter. My grandmother would try to lift my mother off the floor if she fell and I wasn’t home, and she’s lucky she didn’t get hurt.
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Gangrene is an exceptionally painful death. We amputated Mom's foot at 98 to prevent dying from gangrene.
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Hi, all.

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.
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AlvaDeer Jan 26, 2024
Thank you so much for your faithful updates to us.
Know they are appreciated and we think of you. Holding best thoughts for you for sure.
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Glad things are working out. Thanks for the update.
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So glad to hear things are better!
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Hi, all.

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!
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Llamalover47 Feb 10, 2024
spccon: Thank you for your update.
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What great news! Thanks for updating us.
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Thanks for the update. It is always good to read when there is good news to share.
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Best wishes for this transition to LTC. Hopefully both Mom & you settle into the new arrangements quickly.
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Hi, all.

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.
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Geaton777 Feb 16, 2024
spccon, when your Mom asks when she will go home, you tell her, "Your doctor needs you to demonstrate your ADLs before you can go home." This way, she has a clear goal (which you know she can't make) and the blame goes on the doctor. If you say this in the care meeting, the staff will support this statement because it is essentially true.

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.
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I can see that you have lost your patience with your M, who at the age of 60 has brought most of her problems on herself. So when she asked “how long it would be until she could go home” you tell her the truth. She then blames you, says she’s disappointed in you, that “she’d never thought I’d do this to her”. Then asks you to leave. Not much going right there, huh? Neither of you got much out of it.

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!
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I see no problem in being straight up with her. She is where she is because of choices she made not because of you. She now needs care that she can't afford and you cannot do for her. So don't feel guilty in what you said.

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.
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Hi, all.

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.
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AlvaDeer May 17, 2024
Excellent on that meeting with the care team. When you have someone who is able to report and still neglected it is a pretty bad sign. May mean that they truly are unable to meet needs and are truly poorly staffed and neglecting. It so it will run into bedsore, which can kill.

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.
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Great news that mom has adjusted well. I’m also glad you’re meeting with the NH team to address your concerns, never hesitate to do so. During my mom’s four years in nursing home we had these meetings regularly and sometimes had concerns to address. We found it very helpful. And yes, after the LTC policy ran out, mom was on Medicaid, still in the best NH in her city. You definitely can move mom if needed. Be sure to get as good as possible answers at the next place you consider on how they do things better or differently. Often the best way to do that is to visit and find a family member, not directed by the staff, and have a chat about how they perceive the care. I wish you the best
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Thanks for the follow up
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Care conference went okay. I voiced all of my concerns. The administrator of the facility called me afterwards and seemed annoyed from the get-go. She went on about how their patient-to-nurse ratio is perfect, and every patient receives adequate care. Then I said if that was true, my mother wouldn’t be sitting in a soiled diaper for over an hour.

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.
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MiaMoor May 17, 2024
Don't second guess yourself.

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.
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Look i am a double amputee mother and I live alone with my 3 children. I know that I am younger than your mother-in-law but there are so many things that are possible for her even after she has her legs amputated. What you really need to worry about is her staying motivated to get better after surgery and wanting to do things herself. Make sure that she doesn't get depressed and everyone is being positive and helpful because amputees feel like they are a burden to their loved ones and if she feels that way and depression sets in you could lose her. Now if she motivated and positive the sky is the limit I don't always use my wheelchair and I still am able to do anything anyone else can do. I drive, I cook, I take care of myself and my children, I clean, and do laundry. I bathe myself and use the bathroom by myself and I don't have to use my wheelchair for the bathroom and I don't set in it all day either I move around a lot. The people who are telling you that life is going to hard and a lot of work they are right to an extent because it's not like that forever I know for a fact I have been a double below knee amputee for 3 1/2 years and yes I was diabetic also. So take a deep breath and be positive, open minded, and loving and have patience because you will need them but not just because of her you'll need them with doctors, therapy, and with a lot of other people too but breath it'll be ok
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spcon:
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.
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I had Mom’s NH put in a referral to another NH last week (this NH has always been one of my top preferences), and we got lucky, and they had a bed for her. She moved in on Friday. I visited a few days this weekend, and I can already tell it’s going to be much better. The staff is very nice and attentive, the place is very clean, etc.

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.
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AlvaDeer May 27, 2024
This is absolutely wonderful news.
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.
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