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My sister was admitted into the hospital from a nursing home and is now ready for discharge. I took one look at her in the Emergency Room and knew I couldn't send her back. I could see that she has been neglected. She has lost weight, and according to the ER doctor was severely dehydrated, had a UTI infection that was untreated (urine was a dark, brownish red) and she was experiencing difficulty breathing,which was a result of asipirating from food/liquid going down the wrong way in her lungs. Her health condition was not great before going into a nursing home (she is paralyzed and has a mental illness diagnosis). She is considered a high acuity resident.


The hospital case manager is saying that she is going to strongly recommend that my sister be returned back to the nursing home rather than with me. Do I have any rights as her MPOA/POA? I've been barely sleeping as it is worrying about her nursing home and Coronavirus outbreaks. They've had 24 cases and 2 deaths.

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Unless your financially able to hire a support staff, taking on your sister will ruin your life.
Better to place her in a facility close to home and visit regularly.
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Anonymous, as Alva says, this is heartbreaking and devastating all around. I think you need to have a frank discussion with the hospital and NH management/DON (as in a conference call) about the condition your sister was in when she was admitted to the hospital. Press them for answers and find out if the hospital is inclined to report NH to the ombudsman or joint commission for neglect.

Is your sister on hospice? Has there been a swallow study at the hospital to determine why she is aspirating? If this is the beginning of the end stages of her life, you owe it to her to get her the comfort care she needs.

I'm so terribly sorry that you are going through this.

As to the data, at least here in NY, the data may not be accurate, but it doesn't seem to be due to manipulation. The state demanded accurate counts of tests, diagnoses, deaths at a time when there were no tests available, staff was out sick and limited PPE for the staff that WAS there. There were situations in which nursing homes reported more deaths than they had beds, because the data was being entered hurriedly on unfamiliar forms and numbers were entered in the wrong column.

But ultimately, unless you have the resources to bring in several shifts of trained caregivers each day, I don't see that it's going to be possible for your sister to be cared for at home.
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Anon, I feel for you & your sister very much & I admire your willingness to provide her care yourself. It does sound like NH is the only real solution - so continue to speak up for her rights & get her the best care you can in these awful times ((Hugs)).
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Beatty Jul 6, 2020
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To be frank your sister is in a condition so as to need more care than any one person can give on a 24/7 basis. I think it would be a mistake to attempt to do this care at home. You say your sister has mental disability. Does she also have dementia of any kind or is she able to make her wishes known to you. Many people would not wish to go on in this condition, and I know for myself I would not, no matter how stellar the care might be. I am so sorry for what you are both enduring. I am uncertain of the rights you have but I do know that the hospital must discharge, by law, to a safe environment, and I think that they are trying to tell you that it is doubtful that one person can make it so. Clearly a covid environment is ALSO not safe, but those are the times we are in. I am so dreadfully sorry to this agony for you both.
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anonymous54 Jul 6, 2020
Thank you so much for replying. I have been in a constant state of tears and feeling tremendous guilt about even putting her in the nursing home, but I was overloaded with responsibilities at the time. She was diagnosed with schizophrenia at the age of 20. The stroke affected her brain, resulting in the schizophrenic behavior to diminish, but bringing an entire set of new problems, slurred speech, swallowing difficulties, paralysis, and some dementia. She is very aware of her surroundings, can communicate how she wants to be treated, and makes her wishes known to me every day, she wants to go home. With her mental illness, I think the state can override my POA/MPOA rights and place her where they think it is safe. Hard for me to take in, but you are right, the hospital is saying to me that they do not think I can take care of her by myself. It requires 2 people to place her in a wheel chair every day and to place her back to bed. In spite of everything that is going on with her, she tells me to be strong! We lost our parents a few years ago, so I am the only support she has. As heartbreaking as it will be, I will have to send her back until I can find a better nursing home, if one exists.
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I'm curious if the HOSPITAL felt that your sister's admission was due to neglect by the NH. I think that they would have been pretty quick to jump on that.

Who sent her to the ER? The NH? Then they knew that something was wrong and got her treatment?

Is it possible she was refusing fluids and refusing to allow cleanups due to the UTI? I think you need to talk with the social worker and have the ER notes reviewed to see whether neglect was suspected.

And by the way, any nursing home that has had 24 COVID cases and only 2 deaths is doing something right. I mean, of course it depends upon how big the population is, but many supposedly wonderful nursing homes have rates of death in the double digits.

Is there a different nursing home that she can be sent to?
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anonymous54 Jul 6, 2020
Hi Barb,
The NH sent her to the ER with high BP of (170/145), HR was 150. I was told that her oxygen level was also low and she was gasping for breath. She always asks for juice and coffee throughout the day,, rarely asks for water. Given her condition when she was admitted, I would say they were not making sure she had enough fluids throughout the day -- busy with other residents and dealing with Covid-related issues. She is paralyzed and cannot move around to get fluids herself. The NH has never communicated to me that she has refused to be changed -- most likely they were not changing her, again too busy, and she would not ask due to her stroke (affecting her brain and speech). Looking at her in the hospital, I suspect neglect (numerous times I found her soaked in urine and feces). but the hospital has not said that. I was visiting every day (pre-
Covid-19) checking on her, but since nursing homes in my state are still shut down, I am not able to visit -- only video conferences/ telephone calls are allowed. I will speak with the SW to see if I can review the ER notes. My anxiety level is high because of Covid-19, so I am fearful of moving her to another nursing home, which is why I was going to move her home. There is always a "learning period" with NHs (them understanding her needs, her adjusting to new caregivers). The whole situation is heart-breaking. Good point I guess about the number of deaths, but I think the NH is manipulating the data (there have been more deaths, just supposedly not specific to Covid-19). Lots of trust issues for me. Thanks for the advice!
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I'm sorry for this dilemma you're having.

Brother or sister? Doesn't really change the dynamic, but sometimes a woman (and I am assuming you are a woman) feels more comfortable caring for another woman--

She sounds like someone who NEEDS 24/7 care. IF you bring her home, is there any way you can provide that for her?

Why was she admitted to the hospital? Is this an ongoing situation?

UTI's can and do happen to anyone and are not due to neglect, they just happen. If your sister is paralyzed, she is being cleaned and cared for by others. Even with stellar hygiene, UTI's occur.

A UTI can make a normally sane person just crazy--I had one a few months ago and luckily I got something for it ASAP, but it was bizarre how quickly I got really sick.

If she is aspirating her food--there's another concern. You will have to feed her.

During COVID lockdowns it has been almost impossible to keep tabs on a LO in a facility. They can go downhill so very quickly and we aren't on the scene enough to see that they are slipping. NH's are struggling as their own workers get sick and can't come in. They are all quite understaffed right now.

If the hospital case manager feels she is better off in the NH, I would take that as a pretty good indicator that her needs are greater than what you can do for her.

I'm sure your heart is in the right place--but if you bring her home, you will be taking on the roll of 4-5 FT caregivers.

Yes, you have rights at the MPOA/POA. I don't know how to go about asserting those, sounds like you expect a bit of a pushback from the NH.

I'd let her go back to the NH and try to be as present in her care as you can be. If she lives in a facility that allows one visitor, go and assess her condition on a day to day basis.

Just jumping in and taking her in--is your home set up for someone so impaired? There's a lot of steps to take before she can be safely in a regular home.

I feel your pain. If this were my sister, I'd be worried too.
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anonymous54 Jul 6, 2020
Thank you for your heartfelt compassion. She was sent to the hospital because her HR, and BP were too high, and she was gasping for breath. I have been in tears and on an emotional roller coaster, filled with tremendous guilt. I am a woman.
She is my sister. We are very close. I became "mom" to her at a very early age. Until recently, I was taking care of her at home, and then it became too overwhelming (I am 62). My home is not setup to take care of someone impaired, but I've been calling around and willing to move heaven and earth to get the accommodations done. It was hard for me to place her in a nursing home, but my father was also dying at the time, so it became too much to bear. The last year has been tough with the NH -- unreported falls, multiple UTIs (two resulted in Sepsis). This UTI infection has affected her brain. She is presenting post stroke-like symptoms again, tongue hanging out, difficulty swallowing, can't keep her head up. Looks to me like had a mini-stroke but the doctor is saying that it is due to the UTI infection and the amount of urine that was in her body when she was admitted. They drained 1600 ml. (800ml twice in the ED).

I should have moved her to a new NH, but placement was hard and now with Covid-19 not many NHs are accepting new residents. With her mental health diagnosis (schizophrenia) it will be difficult to place her. It was hard to get her in this one. Even though it will break my heart, I will send her back until I can find a new one. You're right. She does require 24x7 care. And though I love her dearly, I cannot afford private care. Even if I could, I am being told that agencies are also short-staffed. This has been a nightmare!
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