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I really don't know where to start, so much has happened. Okay. I brought my mother to the hospital around the holidays because she was weak, dizzy and not responding. She was admitted and told she needed rehab for 14 days inpatient. Let me give you some history about my mother. She is 80 years old, a feisty active person, loves spending time with her friends over a beer or two, and is able to walk up a flight of 15 steps at her home. She has RA, vascular dementia, pacemaker, etc. Please keep in mind I check on my mother daily and see her regularly. She went to inpatient rehab against my better judgment. Due to COVID-19 I didn't want her to go rehab inpatient because I feared she would catch an infection. The doctor insisted that this was best for her. Well, within 5 days she caught a C. diff infection and was not responding. I wasn't even informed. She almost lost her organs, that's how fast the infection spread. She's been in the hospital for 3 months and now rehab. The hospital didn't help her much at all with her mobility and wanted to send her initially to a skilled care facility after a week, but they refused her because she was too ill. She was basically unconscious. Okay, they placed a "G" Tube in her until she got back to eating on her own. They refused to remove the tube when exiting the hospital. All the rehabs I interviewed wanted to place her in a nursing home. My mother gave me Medical POA in case there were an issue with her health. Her mobility has improved, but she's still unable to walk. She's talking, moving her legs, etc. She wants the tube removed and diapers off. She's unable to fully stand on her feet. I asked to have my mother transported in a wheelchair and then get assistance to the toilet, but the rehab refused. The rehab stated it takes too many people to assist her and she is unable to stand long on her feet. Tube feedings are being given to her 12 hours a day plus they want her to eat big meals 3 times a day. She said too much and she's vomiting up the food. They refused to remove or reduce the feeding tube time. I have legal Medical POA that addresses this issue, which my mother appointed me to make the decision. Of course, I discuss everything with my mother, except when she was unconscious. The rehab informed me the POA means nothing and we have to do what the doctor says. My mother wants the feeding tube out of her belly and wants to resume going to the toilet. She wants to go home. She is upset about passing waste and urine on herself. They have threatened me to call authorities on me if they feel I am abusing her. I want to remove her and bring her home. She wants to go home. Please help. Your insight would be most appreciated. Signed Concerned Californian.

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Wow! Turn the tables on them and get ahold of the Ombudsman in your county. Document everything you can and file a complaint. It sounds as if they are trying to intimidate you by stating that your POA means nothing and they will call the "authorities" on you. The fact that she should be receiving rehab and hasn't is neglect on their part. Please file a complaint - when I filed one, it got fast results. Once the state got involved, something was actually done. I pray that you have the same results.
https://aging.ca.gov/Programs_and_Services/Long-Term_Care_Ombudsman/

Edit to add: I'm assuming she is in a Skilled Nursing Facility for rehab. Is this correct?
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WisdomShay Mar 2022
Maggie61r,
I appreciate your response and thank you so much for your information.
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Time to see an elder law attorney to discuss your rights as POA to bring your Mother home. In order to remove a feeding tube your Mother is dependent upon you may need legal help. It is easier to refuse placement than to get one removed because feeding tubes are no longer deemed a "heroic measure". This may come down to your being reported as an incompetent POA (guardian of your Mom) and this could cause a fight between you and the state for guardianship of your Mother.
IF you are going to bring her home it may be ONLY with the help of Hospice and Palliative care. However, if this is the case, then it must be clear to you that this is end of life care, that you would not ever be going for "treatment" again.
See an elder law attorney. This has gone a long long way already, and things are about to get nasty. You need now to know what you want for your Mom, that is to say what she instructed SHE would want. If her advanced directive does not have specific instructions such as "I do not want and will never accept NG, PEG or TPN feedings" and "I will never accept dialysis" etc. all of this becomes much more difficult.
If your mother is "of an age" I am very very surprised in this day and age that they are insisting on all of this for a patient with dementia and such debility.
See an attorney.
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C diff is a life changer for the elderly. My mom caught it, changed the quality of the rest of her life.

if your mom is unable to stand , then she cannot get to a toilet as needed. Sucks, but the depends is a fact and consequence of her illnesses and condition. My mom is not far off from being able to walk to the toilet. A result of her decision to quit walking down to dining room for her meals. I did everything I could to get her to see that she will end up in a wheelchair. Hospice brought the wheelchair last week… I would not expect my moms caregivers to continually clean up after my mom if she wasn’t wearing her depends. That’s an unrealistic expectation.

If your medical POA is not activated, that would be why they are telling you it means nothing. Directions come from the doctor who oversees your mom. Have a Frank discussion with whomever is following your moms care. Then you will be able to understand what needs to happen going forward. Honestly, I don’t think your mom will recover from all this.
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I read you have medical POA does it say no feeding tubes? If so, why was it inserted? Were u told it was just temporary to get her over a hump? Once a feeding tube is inserted its hard to get it removed.

The only way I can see you being able to get Mom out of rehab is to have her placed on Hospice. Then the feeding tube can be removed. You can do it from home but you will be her caregiver 24/7 unless you can hire an aide. Hospice care is paid by Medicare. You will get diapers, her prescriptions and other needs. A Nurse will check on her maybe 3x a week and an aide maybe 3x a week for bathing. You will be taught to give her meds. (We did have a poster say that the Hospice she used supplied an aide for 4 hours I think that depends on how many aides a Hospice has available) I would talk to a Hospice near you to find out what you need to do and what they can do. Yes, Hospice means the end. But it also means Mom will not be going thru what she is now. Her comfort is Hospice's concern. This will be a hard decision. But if you can be Moms caregiver it maybe the right decision. I based all my decisions for my Mom on how she was effected. There comes a time they just don't want to be poked and prodded anymore. Be aware that if you get Hospice care, you will be responsible for the cost of a transport to get her home. Hospice also means no hospital. No extreme measures to keep Mom alive but...she will be kept comfortable in her own home. *

This is what I would do. I would talk to the Doctor in charge of Moms care or the Director of Nursing and tell him/her that you want a Hospice evaluation. That you feel Mom has suffered enough. If the eval shows that Mom fits Hospice criteria, then take her home. If you have any resistance from the facility, call Adult Protection Services telling them Moms wishes are not being carried out. Have that Medical POA available. Rehabs are not prisons. Mom has rights.

*Hospice can be done at the facility but Mom will be responsible for the cost of the facility stay. Medicare only pays for the care not the bed.

So sorry for what you are going through.
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MJ1929 Mar 2022
Bring her home, then put her on hospice so the transportation is covered.

Also, hospice does not mean no hospitals ever. She can go to a hospital, but hospice has to be discontinued while she's there and can be restarted when she's released.
If she had a fall, for example, and required stitches, she can absolutely go to the hospital and get them.
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Dones she have a living will that says not to prolong her life? Ypu need that as well as the POA. POA does mean something. If she still has her right mind then she needs to speak up and quick. They'll milk her for as long as they want then. Be there as much as possible and be known what you know. Tell them you will be contacting your and her attorney. At 80 years old, she has the right to live or die naturally.
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If they are making her eat full meals on top of the feeding tube meals, its no wonder she is throwing up. If a dr deems she can eat, swallow and digest food, then cant they order the tube removed? Also, it sounds like she cant get to bathroom on her own and unless you have an aide 24/7 to bring her, she might still need diapers - although i would hate my mom to have that as well.....Speak to the head dr at the home - tell them mom wants to come home and if he/she feels she can eat on her own etc BUT you also will need to be available to help mom 24/7 or hire an aide - its a nightmare - I KNOW!
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Beethoven13 Mar 2022
They can clamp the feeding tube and just flush it with water once a shift and see if she can maintain her calories and maintain weight or gain. That way if she can’t, the tube is still there as backup. Unlikely will remove it if she can’t demonstrate can handle a diet and maintain weight.
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Mom needs a speech therapist to give her a swallow test and then meet with the doctor about removing the G tube. I doubt rehab can perform this so she may have to return to the hospital for this procedure.

If mom is not getting PT she should be so she can regain strength. If she cannot transfer herself from bed to toilet she will need a lot of care at home.

Rehab wanted to move my dad to the nursing home but I insisted on taking him home. He was wheelchair bound but was able to transfer and move himself. Yes, we had day to evening sitters but it was so worth it. He enjoyed a much better quality of life.

You may need to meet with the rehab director to get her discharged. Do not remove her against the doctor's advise because Medicare may not cover her rehab stay.
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C-Diff is not "caught." It is a result of antibiotics.
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Santalynn Mar 2022
Yes, and notoriously by use/over-use of the Fluoroquinolones, super heavy duty antibiotic family (Cipro, Levaquin, Avelox, etc,etc.) that are used way too often for minor infections instead of reserved for 'life or death' situations.
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From what you've said, I suspect that the reason rehab is resisting is they think it will be unsafe for her to go home, or unsafe for her to take out the feeding tube, or any of the other things you're requesting. They can't just do something that they feel is medically unsafe, just because you ask. It sounds like your mom has severe limits on her strength, and that may indicate to them that she needs full-time care. If she needs full-time care and you can't provide that at home (not coming in a few times a week and letting her "do for herself" the rest of the time, but FULL-TIME CARE), then that may be an "unsafe discharge" from their point of view, and they would be legally liable if they knowingly discharged her to an unsafe environment.

Be honest with yourself about her condition. Forget what she WANTS to be able to do, forget what YOU want her to be able to do...what CAN she actually do, several times a day, every day? Her condition may have deteriorated to the point where she cannot go back to how she was before.

The point about the feeding tube and the meals and the vomiting is disturbing. I doubt they are doing it to be cruel to her, so that does sound like something to talk to the doctor about, and if that doesn't resolve it, to talk to an elder care lawyer about as well. Talking to a lawyer in general may also help you - they can explain all the different pieces, what the legal requirements are, what the limits on POAs are, etc. Also, if your mom is still competent and can adjust her living will, she can do that to refuse certain types of care, like the feeding tube, if she wants. That might shorten her life if she medically needs it, but that's a choice she can make.

Good luck. I know this is hard.
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WisdomShay,

Sorry to hear that you are faced with all of these challenges.

You mentioned that "the rehab stated it takes too many people to assist her and she is unable to stand long on her feet. Tube feedings are being given to her 12 hours a day plus they want her to eat big meals 3 times a day. She said too much and she's vomiting up the food."

As others have stated, your medical POA does mean something, but have you considered how you would address ALL of your mom's needs at home - feeding, hygiene, bathroom needs, safe lifting, physical therapy, etc.?

If you bring her home on hospice, is your plan to attempt to nurse her back so she eat without a feeding tube, and be mobile with the assistance of a walker? If so, this will require a huge commitment from you -- beyond the daily calls and check-ins that you were used to doing.

I have nursed back my mother several times from having a stroke, TIA, etc., so it is possible to nurse someone back, but it requires a huge commitment. There will be outpatient physical therapy needed, and ongoing therapy exercises led by you to help build her muscles. There will be a variety of techniques to learn for safe feeding, balancing nutritional needs, transferring, lifting, maintaining good hygiene, etc.

You will need to ensure there are furniture re-arrangements, medical
equipment leases and some purchases, etc.

I have been on this journey for 9 years so I am speaking from experience, so my advice is to research all of her needs and come up with a plan on how you would be able to cover those needs.

Check with her insurance on whether they cover in-home and outpatient physical therapy.

Will you be the only person caring for your mother if she returns home?

Are there funds available to hire part-time caregivers to help with your mother's needs? (I hired 3 part-time caregivers but it comes with a lot of instructions and coaching because these agencies don't usually hire the cream of the crop)

Again, sorry you're faced with these challenges. Don't make any decisions without having a plan to address ALL of her needs.
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BrendaJayi Mar 2022
I have cared for my husband at home and you are correct. Critically ill humans require a large commitment in time and energy. There are Medicare and Medicaid services to help. Although the effort to care for my husband at home is monumental, it is easier than dealing with the mistreatment at nursing home. And their non stop lies.

I had camera in room 24/7. Simple hydration very important. I complained and facility told me my husband refused fluid. I had video showing they were not offering him anything.

I got so tired of coming in and seeing him soaked in urine, trousers soaked, bed soaked.

I know the very hard work you have done to care for someone at hone. In the end - is there anything more important than providing the highest possible quality of life to a loved one in their final days?
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Unless your POA is restricted to explicitly not allow medical decisions, you do have power to move your mother.

Doctors in Nursing Hones are hired and fired by the administrator. One of the major tenants in Centers fir Medicare and Medicaid law is that patients have the right to refuse care. Unless your mother has been declared incompetent by a judge, she can make her own decision to leave.

Nursing homes are miserable places to live. No privacy, 24/7 noise, constantly rotating care givers, and more. I was in a nursing home 7 months. There was actually a very good, compassionate administrator. Still - the nature of the business is misery.
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Sample Mar 2022
I need more info. I tried to get my wife out of a assisted care facility she was placed in after a fall and broken hand. I was told I could not remover her without incurring the full cost to date. She is currently on Medicare and not getting the care she needs
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Talk to her rehab and her primary care doctor about her long-term care. Ask rehab for a plan to get her back on her feet and able to do the things that allow her to go back home (find out what the criteria is for her release from rehab). Is it possible that she can become fully rehabilitated, return home and go back to the way she was living before the holidays? Should she be on a special diet, such as soft foods and a meal replacement product such as ensure, until she is able to handle regular foods? Do they think that in time she will be able to handle regular foods? Is she able to feed herself? Can she afford to have full-time aides coming to her at home to help her with cooking and feeding, getting out of bed into a wheel chair, going to the bathroom, dressing, etc.? Rehab might be better than skilled nursing at getting her back on her feet and released to home. Rehab will want to release her after 90 days (I think that is what Medicare covers). Make sure that there is a plan to get her in shape to be released. Something similar happened to my aunt (who was in her 90s). Her independent living facility felt that she was not caring for herself (she was undernourished and weak) and they admitted her to a rehab facility. The rehab did nothing with physical therapy until I asked them what they were doing to prepare her for her release and insisted on it. They and her independent living facility required that she have 24/7 aide(s) to help her when she returned home.
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There are two kinds of rehab, Acute rehabilitation and subacute rehab, usually in a skilled nursing facility. Acute rehab is more aggressive rehab, daily therapies and patients Must be able to do at least 3 hours of therapies every day, including weekends. There is physical medicine and rehab MD over seeing care and rounds most days. There is a higher level of care available at acute rehab, therapies and also laboratory, and some IV medications. Subacute rehabs vary. Maybe therapy for an hour a day or not even every day. (Covid staffing problem). From what you described, it sounds like your mom might be in subacute/ snf Rehab. Even if she didn’t qualify for acute rehab initially, she might now. See if you can get an acute rehab eval while in snf. Her therapist should teach her bed exercises that she can do by herself for strengthening. Edge of bed exercises When You are Present. . Or while sitting in chair. Encourage her to do them. Marching in chair. Flexing feet and ankles, arm raises and lifting light objects. Plastic water bottle. Usually if she demonstrates she wants and can eat, and maintain and gain weight, tube feed could be reduced and possibly d/c’d. The diapers were what made me think snf. Given her previous level of function you described, working to return to continence with toileting could be a goal. She has to be ambulatory and able to sit/stand. Acute rehab/OT works on this. If she is awake and cognitively only minor deficits, ask her to participate as much as she can with skilled therapy so she can max out what skilled can provide and be a candidate for acute rehab.
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Sample Mar 2022
How does one get upgraded to acute rehab. My wife is jailed in an assisted care facility after a fall and broken hand. Since being in this facility her physical strength Has deteriorated where she can not stand
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When my grandpa was in rehab after a broken femur in 2003, they delayed care/action, he got bedsores, multiple hospital stays etc. At close to 100 days I was called to talk about payment moving forward. I told them he was perfectly well before tripping when pruning the bushes and breaking his leg and they were trying to kill him and I was taking him to my house. They told me he would dies within 2 weeks, I said it was better to die with his family when with the facility. I got his records faxed to the local visiting nurse group, they said they could mange his care so we sprang him and brought him here. He got better, PT was here to get him walking again and the wound nurse got him healed. He lived a year, dyeing from pneumonia at age 100. I think my grand mom was the POA, but because I refused to pay moving forward might have helped get him out.
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Sample Mar 2022
You failed to mention the significance of the 100 days. That is when Medicare runs out and you are forced to pay. 100 days is a lifetime accumulated number. It is unfortunate these places hold them prisoner until the money drys up.
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My (then 85 yr old) husband went into "rehab" after his last spinal surgery (Dec 2019.) Within a few days it was obvious to me that they were feeding him mood drugs. I asked for a list of what they were giving him & they printed out all the scripts he had registered, ever, and refused to narrow it down to what they were handing him each day. Then they said they were keeping him until February, which was when his benefits ran out. His roommate had sores on his legs that oozed all over the floor. I had to demand someone come in and mop the floor. After 2 weeks of this my husband & I began demanding he be released. Finally we got the surgeon to state he could go home. We never met the facility's doc. Seemed to me The rehab/nursing home was just milking the insurance system. He left the facility mid January 2020. Just in time. I now have a deep loathing of such facilities, at least the ones in NY.
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My (then 85 yr old) husband went into "rehab" after his last spinal surgery (Dec 2019.) Within a few days it was obvious to me that they were feeding him mood drugs. I asked for a list of what they were giving him & they printed out all the scripts he had registered, ever, and refused to narrow it down to what they were handing him each day. Then they said they were keeping him until February, which was when his benefits ran out. His roommate had sores on his legs that oozed all over the floor. I had to demand someone come in and mop the floor. After 2 weeks of this my husband & I began demanding he be released. Finally we got the surgeon to state he could go home. We never met the facility's doc. Seemed to me The rehab/nursing home was just milking the insurance system. He left the facility mid January 2020. Just in time. I now have a deep distrust of such facilities, at least the ones in NY.
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con3ill Mar 2022
I had a similar experience 10 years ago with the sub-acute rehab to which my husband had been discharged after coming back from a near-fatal stroke. It wasn't the one we wanted, because he had a respiratory problem that the preferred facility was not equipped to deal with. The one he went to gave him no physical rehab for the two-plus weeks he was there, and he sat in a room day and night. Worse, when he pulled out the naso-gastric tube, he had to be sent back to the hospital to have it re-inserted (via ambulance, a 40 mile round trip). Twice. I thought that any facility that presented itself as a treatment center for respiratory problems should have been able to handle that. I was a nervous wreck thinking that his window of most significant recovery was being squandered on this facility. I said to our case manager, to her face, that I thought the facility just wanted to run out our insurance. He needed -- and thank heavens, got -- months of treatment in a top-notch skilled nursing facility, relearning to walk, read from left to right, and to eat safely. It's been 10 years I've had him home.
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I am in a similar situation where my wife is being held prisoner. I can not get her Out of a nursing facility without incurring the entire cost to date. Right now Medicare is paying. The care is terrible which may bring future law suits. The care is inadequate but they facility is doing a good job covering their bases to prevent law suits. So the question is how do I do a jail break. I have many family members willing to help. Her disability is she can not walk but she has been that way for a long time before she broke her hand that led to a short hospital stay then the prison
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Debstarr53 Mar 2022
How can they threaten to make you incur the cost? My stepdad was being held when he wanted to go home. I took him OUT on 2 separate occasions, different facilities in 2 different states. In one of the cases, his doctor told me to go just get him and then go back to get his belongings. The Dr. was very emphatic about getting stepdad home so he could start home care and actually start to heal.
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Wait a minute. If you have medical POA for your mother that means you have all the legal authority to make any and all medical decisions and to act on her behalf with her best interests in mind.
The people at the rehab are using intimidation tactics and trying to scare you because they run the bill up.
People have a right to refuse medical treatment. Cognitively impaired people who have POA's that were appointed when they weren't cognitively impaired have a right to refuse medical treatment on their behalf. Get yourself to a lawyer right now and explain what this 'rehab' is doing to your mother and about the POA.
I had my father's POA. The hospital wanted to put him on a feeding tube. I said no. He wouldn't have wanted it. They tried to persuade me, but in the end respected my decision.
Does the rehab your mom is in have different areas of the facility that feature long term care, skilled care, and memory care? My guess is they do. They want your mother to become a long-term care resident because she's probably no trouble to them and she owns a home. Please get to a lawyer now and then go to the cops and tell them what they're doing and that you want to take your mom from there.
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get to elder care attorney ASAP to get help with this situation - alsp local dept. of aging should be able to provide assistance/ POA and Health Care Directives should control what is done
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Hello. So sorry you're going thru so much. I was right where you are a few months ago and I finally had to acknowledge that I simply could not care for my mom at home even with hospice and some inhome care . My mother also had CDiff and stopped walking. She dropped to 150 lbs but couldn't help therapist so they said they couldn't get her up. It tore me up to see her in diapers but she couldn't get out of bed. At that point I realized if trained therapists and CNAs couldn't get her up, I wouldn't be able to give her the care she needed at home, so together we agreed to "temporarily" go from skilled nursing to long term care. A month later she passed. Whatever you decide, please monitor the CDiff, have them turn her every 2 hrs so she doesn't get bed sores, and just keep loving and supporting her.
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Talk to your primary care physician not the rehabs. Tell him/her whats going on and you want to bring her home. What home care can they subscribe. Home PT will make all the difference
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WisdomShay: Perhaps you need to retain an elder law attorney.
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Talk with her doctor about options. She may need to "go on hospice" or "palliative care" to stop the type of treatments she is getting. If you can convince the doctor to allow this, then you can get her home with maybe a little home health care assistance. Be aware that she might get worse without her tube feedings, but it appears that you are both aware of this and comfortable with the possibility.

By the way - most people only get C. Diff when they are receiving multiple antibiotics that wipe our their normal gut flora. Everybody had C. Diff in their digestive tract. Usually it stays in balance when their gut flora is OK and they are have a healthy immune system.
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When avpatient doesn't improve with rehabilitation, it means that the patient has reached the stage of no return. It's time to consider hospice.
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Myownlife Mar 2022
Daughter said mother is improving. And she could vastly improve with increased care, and could receive it at home.
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Tell them you are prepared to report them to Medicare/OIG (office of inspector general) for neglect and abuse. Get them to release her to home care and don’t allow them to classify her release as “against medical advice”. You want Medicare rehab and nursing services transferred to at home care. Bring her home and evaluate for hospice if things have gotten that far. These nursing homes are Rehab predators. They hang on to these patients for the rehab Medicare money and do very little to help - most often causing harm. They cover their malfeasance by claiming that almost all of their patients are in “dementia” whether they are or not. That way, no one believes the patients when they report abuse and lack of services. They cause a lot of mental and physical deterioration- all because they want the easy Medicare $. That is why almost all nursing homes reserve a group of rooms for “rehab” patients. They want the money.

From my experience with these places the nurses in charge range from “company robots” who know better but won’t go against the administration to incompetent idiots who could not make it in a real hospital setting. The doctors associated with the nursing homes typically have their own practice outside of the nursing home and are AWOL from most of the nursing home/rehab patients and rarely seen or heard from except to approve meds recommended by the nurses. It is a joke and a money maker for them. Their fall back position is to always claim there is something about the patient that prevents care/PT etc or renders the patient’s version of what is really going on “unreliable.” I would avoid sending a loved one to an in-patient rehab unless there is no other choice. The quality of Medicare approved home care (P/T and nursing) is so superior there is just no comparison. It is one on one and can be observed by family. The “rehab” offered in most nursing homes is nothing short of a fraud on the patients, families and taxpayers. The enormous amount of $ coming in to nursing homes for this so-called rehab care is the bread and butter of their profit.
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Talk to home health/hospice and get set up to have someone help her at home. Then just go and bring her home. You can leave a medical facility AMA (against medical advice). My husband was just in the same situation - in a rehab that was making him worse. I couldn't get patient services to call me back, so I just left them a message - I am coming Thursday and taking him away. So I went in, got him in a wheelchair, and took him out to the car, and left the wheel chair. He wasn't in as bad a shape as your mom. Maybe you'd need to stop by an urgent care to take out feeding tubes. But they cannot legally stop you from leaving.
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