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Hello. My Mother had picture perfect health for 87 years until late April of this year. Exercised, ate good, had lots of friends & close family, went to doctor appts and was healthy. Then she fell in her yard and broke her elbow. She was wrapped up and sent back home. Then 2 weeks later she fell in her kitchen and broke her shoulder on her other side. That was the first hospital visit since having a child. From there she went to a Rehab center at a Care Facility. This was all new to her three daughters. Dad has passed. She fell out of bed twice in the first week. (didn't break anything) and then she seemed to be getting much more forgetful. Is it the onset of dementia or is it nursing home related? She can't walk on her own, has become incontinent, has lost a great deal of weight. She has a pressure ulcer on her coccyx that is considered "unstageable". What in the world does that mean in real life? We have to pull answers out of the staff at the nursing home. No one tells us anything. No updates. We have to ask and ask and ask questions over and over and over to get anything. They want "conference calls" between 10a and 3p. We all work and in jobs where we are unable to take an hour call during this time. Now her wound has e-coli in it. The place is so expensive and terrible. It's dirty, they run out of basic supplies, paper towels, towels, sheets, etc. Yet it has a 4.5 out of 5 rating, is in a "good" part of town and looks fabulous on paper. Any suggestions? Help? Thank you.

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Sadly I am an expert on bedsores and the numbers attached to their stages. I would be interested in hearing what the hospital has to say regarding the condition of the one your mother has. I too was not told about the one that developed in the same area as your mother's did until it was also unstageable. I nearly fainted when I first saw my mother's at the office of an infectious disease doctor who had the worse bedside manner especially when one is dealing with this.

My mother was catheterized in order to help keep the area dryer. That however can cause frequent UTI's. Eventually my mother had about 4 types of pain medication for this condition.

I would be happy to answer any questions you might have. My mother has passed away after about 5 months on hospice. I am not saying that will be your experience. I did move my mother to a different NH where I felt the care was better. I had not felt the care was bad in the previous NH until a variety of unfortunate occurrences happened.
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BarbBrooklyn Aug 10, 2023
Riverdale, I was so hoping you would chime in with your thoughts!
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I'm so happy to hear this.

In the back of your mind should be "is this a medical malpractice case against the NH?".

Make sure that lots of pictures are taken.

Get mom's prior medical records from hospital documenting that the bedsore did/didn't exist upon admission.

Frankly, I would call a Medi-Mal lawyer this AM.

One of our posters used to work for a Medi-Mal attorney, hopefully she'll have some advice.
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“I went last night and got my first look at her pressure ulcer. It is unbelievable and today I'm going to go there and have her admitted into the hospital.”

Your poor mom. I hope she recovers fast.
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Nancy, re:communication. My mom's NH was terrible at this.

What finally helped (somewhat) was working out an agreement with the SW and Unit Director (who was an RN) that I would email them once a week with questions and concerns and that they'd get back to me in a timely manner. We agreed from the get-go that I would be the point of contact for medical questions. My SIL and Brother were the most frequent visitors, but we knew that we needed the administration to have only one point of contact for medical information and directives. That was me.

We came to this agreement after a really upsetting phone call from one of the nurses, telling me that mom had a collapsed lung (she didn't).

It was the last straw. I asked for a care meeting, took the day off and asked them why I shouldn't report them to the Joint Commission on NH Accreditation.

They cleaned up their act after that .

I realized, along the way, that while their communication sucked, mom's care was quite good.

That does not seem to be the case here.

Have you left messages and asked the would care doc/nurse to call you?

Is one of you Health Care POA?
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Nancy; Medicare Part A should have paid for up to 100 days of rehab.

If it was denied after 6 weeks, did you appeal the denial? Was it due to mom not progressing or not cooperating?

Her "private insurance" by which I assume you mean Medicare Supplement (she's not on Medicare Advantage, is she?) would only come into play after day 20 of Straight Medicare part A paying in full.

As I mentioned, Ohio is a state that allows Miller (also called Pooled) income trusts. If mom's INCOME (not assets) are over the Medicaid amount, she can create a trust and the excess income in the trust reverts to the state after her death. This gets her under the income cap.

If mom has countable ASSETS (house and car don't count; depending on which state, retirement accounts may also be exempt) like a Brokerage account, Savings, CDs, etc, those generally need to be spent down until she is eligible for Medicaid.

Does one of you have POA for financials? Health Care?

If you do, use some money to visit her Elder Law attorney and get some guidance.

But I SO agree with MD; if she's got E.Coli in the wound, she needs to be gotten to the hospital asap; the bedsore itself CAN be a sign of neglect; E.Coli in the bedsore means they aren't cleaning her properly. Clear neglect.

Sepsis (a blood infection from a wound like this, or from a UTI) can kill. And quickly. With few symptoms, even in a GOOD facility. My mom was in a very vigilant place; she STILL nearly died of sepis due to a UTI that got out of control in a few hours, and yes, we had someone visiting every day. We just aren't trained to see the signs.
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Nancy3rd Aug 10, 2023
Mom has a Medicare supplement. We did appeal the denial but it was denied again. We do live in Ohio. We did see an elder care lawyer and are taking their advice regarding assets. My sister is POA for financials and healthcare but is not knowledgeable in either and isn't sharing all information. Not that she is intentionally doing anything, however, she is quite overwhelmed with her own issues.
I went last night and got my first look at her pressure ulcer. It is unbelievable and today I'm going to go there and have her admitted into the hospital.
Thank you for your helpful info.
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Nancy, I believe you mean "Medicaid" assistance.

Medicaid is means tested. Have you seen an Elder Law attorney about setting up a pooled income trust?
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You haven't had a care meeting to go over her care plan since she arrived in May or June?

Is Medicare paying for rehab?
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Nancy3rd Aug 9, 2023
We have had two care meetings since end of May. My Mother's private health insurance paid for the first 6 weeks and then denied coverage. Her income is too high for Medicare assistance even though just barely. She is self pay for now.
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Thank you all for your input. We are all close in distance to her facility and at least one of us sees her daily and we are there for at least probably 2 hours to many hours (all day). I have just started a new job when this happened and even with that I have taken off so much time to handle different items with her and I will continue doing so while trying to keep my job to feed my family.
My biggest complaint is the lack of communication from the facility. I have asked my sister who has a bit more time to at least check with other facilities to see if we're closer to getting her in there. We (my sisters and I) are meeting to discuss these things. I am ready to take her to the hospital to get her out if that is what we have to do. Although I didn't mention that my mother has some childhood trauma from growing up in an orphanage that is showing up now and she is very fearful of moving again and of "telling" on anyone at times. This is very concerning but it gets her so upset to discuss it that it is very difficult.
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The below is not criticism; it's some advice/questions based on my experience with MY mom in a NH.


1. Have you considered calling the Ombudsman?

2 How far away is mom's NH from where you all live?

3 You need to be talking to the DON and/or SW, not the aides.
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Nancy3rd Aug 9, 2023
I have contacted the board of health regarding some issues. And I have gone to the DON, the Care Coordinator, the Charge Nurse, Nurses, and aides, speaking with each to hear their responses to the same questions and to report things to the DON.
I am 20 miles from the NH as are my sisters.
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UGH...UGH...UGH

Does she live close to anyone who can see her every day, even if it is for 10 minutes? If not, move her to somewhere closer and more convenient and go and visit everyday to see what is happening.

The falling: She should be getting PT who can help her strengthen her muscles (mainly the abs) The problem is that there are a lot of PTs who will only treat patients to what they think is appropriate for a person's age. They don't try to get them walking again. The way I got my Mom to walk again was to get her out of the "hospital" and get a PT who does house visits or in-office PT. If you do in-office PT, be aware that you cannot go back to house visit PT. Then I did the exercises with her every day. You don't say whether she is now in a wheelchair or using a walker. I would suspect she should be able to get around in a wheelchair and that with help, she can get in/out of the wheelchair. If she cannot do that, she is either drugged too heavily or her medical care is inadequate.

The forgetfulness: I suspect she is in a lot of pain, plus the infections that are raging in her system. When a person is in pain, it is hard to get anything done and even harder to concentrate on anything. When my Mom has a UTI, her legs forget how to walk. After getting a pill for the UTI, within a day, she can walk again (the most amazing thing that I have seen repeated over and over.) If her drugs are inappropriate, she may be living in a fog.

The doctor: I would look for a geriatric doctor and take your Mom to that doctor. It is time to get a fresh diagnosis and a fresh care plan.

Her surroundings: Get her out of that nursing home. It sounds like they are not doing what you are expecting them to do. To have constant infections is unacceptable. It doesn't matter if they are understaffed or not. That is THEIR problem, not yours.

Wearing of the diaper: It sounds like your Mom is a severe fall risk at this time. She might not have enough muscle strength to get up out of bed and go to the bathroom with help....or maybe not enough strength to call the nurses so that they can help her go to the bathroom. Wearing the diaper is a good option at this time, however, it sounds like they are just not caring for her like she needs to be cared for....again more the reason to get her out of the current place where she is. (Do check whether she can press the button to call for help. My Mom cannot press the button hard enough, which means that she cannot get help to go to the toilet, when she needs to....this is a big issue when she is in a hospital as they don't have pull cords in our hospitals.)

Did she live independently of any of you up to all these events? If so, she might not be able to return to full independence. Start looking into assisted living. In my state, some of the ALs have floors that have Skilled Nursing Care/Rehab Hospital. Then when the resident can, the person goes back into their Assisted Living area. Also look into caregivers.

I'm so sorry this is happening to you. I think you need to find another rehab hospital/care home and visit more often (be more active in her care plan) or take her home and one of you needs to supervise her care 24x7. She needs you to advocate for her right now and until her health stabilizes.

P.S. I'm assuming that someone is taking care of her financial obligations....
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Isn't Medicare paying for rehab?
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JoAnn29 Aug 8, 2023
They only pay 100% the first 20 days. 80 to 100 days 50%. Supplementals don't always cover the 50%. They didn't with my mom. So if your in the whole 100 days at $150 (and thats conservatively) thats 12k. For some thats a lot of money.
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Yes she has a wound care nurse. We have not met her or found out what her diagnosis is other than one word "unstageable". We certainly do need a meeting. Also, is it typical that nursing homes do not give itemized bills? Ours only gave a bill that says $ per day. (can't remember exact amount). they say she sundowns but very new only slight onset of dementia. And she has had 2 UTI's so far while there. Never had one prior.
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anonymous1732518 Aug 8, 2023
Sundowning, not surprising being in a NH especially now with the days getting shorter and on the weekends, especially Saturdays.

Cover909
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So the nursing home did get her an air mattress the second week she was there and it's the type that goes up on the sides to make it harder for her to fall out of bed. She has not had a fall since then. However, we wouldn't know if they don't tell us and we feel she definitely won't tell us. A stroke was ruled out when she was at the hospital. None of us have seen the bed sore as it is wrapped so tight and Mom tells us that we cannot look at it. God love her but she is very much the matriarch of the family and we are not supposed to question anything. But saying that we are questioning the staff of the Nursing home. We are on waiting lists for better facilities that we have been investigating. They're almost all at full capacity and IDK if anyone wants to share, but these facilities are well over 13k a month. Is this typical? As far as therapy, her therapist said she is not a candidate to return home. She cannot go to the bathroom by herself. And she is always wearing a diaper now. She had no problems before these falls. She said the staff told her to pee in her diaper at night. I can't even go on how this infuriates me. At the same time, everyone around me tells me that this is how they operate and this is how it is. I have reported the facility to the Board of Health.
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anonymous1732518 Aug 8, 2023
Sadly those who told you how this is are correct. Many NHs are understaffed and are usually looking for help, a problem worsened since the pandemic.

The night crew telling her to pee in the diaper at night, either want to horse around or are swamped with what the day crew did or did not do.

As you've discovered the "better" homes are filled up and have waiting lists. These homes can and many do charge higher rates because of this.

Out of curiosity if you know, did the bed she is/was in have bed rails and we're they "locked"?; a really sweet nurse locked one of the ones of the bed I'm in, mentioning the same about falling out and she could get in trouble.
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Don't make any decisions about what the next steps are without reading this thread:

https://www.agingcare.com/discussions/if-you-are-going-to-become-a-caregiver-480769.htm?orderby=oldest
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Nancy, bedsores are a sign of NEGLECT. You need to contact APS, the Ombudsman and Medicare. This is actually criminal for the nursing home and they need to be held accountable.

Please find another facility for your mom. She may be at her end of life but, she doesn't deserve to die in misery because of this dump of a nursing home.

May The Lord give you all strength and wisdom to deal with this awful situation.
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anonymous1732518 Aug 8, 2023
..or from being understaffed.

Cover909
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Yes, u and sisters need to take the day off. Get in there and find out what is going on. A bedsore is serious and needs to be taken care of by a wound care Nurse. It can become sepsis.

Were tests run when she was hospitalized to rule out a stroke causing her problems. You know, you have a right to transfer her to another NH. You also can call 911 and have her taken to the hospital for that bed sore. From there, you can have her taken to another NH.
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Question 5. She tries hard to make that happen.

Cover909
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BarbBrooklyn Aug 8, 2023
Barb here. What do you mean, Cover? Who tried hard to make WHAT happen?
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They’re doing an awful job. And the fact that they’re secretive is a very bad sign.
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anonymous1732518 Aug 8, 2023
That could be being scared of "retaliation" from the Administration.

Cover909
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"Unstageable pressure injuries are when the stage is not clear. In these cases, the base of the wound is covered by a layer of dead tissue that may be yellow, grey, green, brown, or black. The doctor cannot see the base of the wound to determine the stage."

Mayo Clinic website is your friend . Consider having her taken to the hospital for evaluation of the bedsore.

Is mom being seen by a wound care nurse? Demand one

Get a care meeting scheduled ASAP and take the morning off from work.

Make sure all her therapists, DON, SW and dietitian are present or on the call.

Ask how they are going to prevent falls (lowered bed?)

Ask how they are addressing bedsore? Alternate pressure air mattress?

How is she progressing in therapy?

Do they think she will be able to return to living alone?

What level of care does she need?

Do they believe she has dementia? (Ask for a psych eval).

Make sure they have tested her for a UTI --these can cause psychological and behavioral symptoms.
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