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Last Sunday, after my 89yo mom attempted to kill dad with a butcher knife, he called 911 for the third time, she was sent to the ER and he refused to pick her up. (For details, see my thread, "How do we get the hospital to keep mom." Bascially, all this started with what I suspected was a UTI infection.) She was sent to a behavioral health facility, had a choking episode the first morning there, was sent to the hospital across the street, returned a few hours later to the facility, had another choking episode the next morning, was sent to the hospital again, and never returned to the facility. (They never sent her belongings with her and her POA, me, is supposedly the only person that can retrieve those belongings. I am three hours away with a husband with dementia. Going there to retrieve her walker and clothing is not an option. Why they can't just take them across the street and give them to her?) We don't know if the psych eval was ever done since she actually spent so little awake time there.


Three weeks before she went to the ER last Sunday (when what I suspected was UTI symptoms started), at home she was walking, talking (but with expressive aphasia), eating anything she wanted, cooking meals, doing laundry and light housecleaning. Now she is NPO (her directive says no feeding tubes or IVs or any other measures to prolong her life), unable to move from bed to wheelchair, speaking more clearly but her words indicate she is not aware of reality, and has been diagnosed with "dementia with psychosis." Oh, and the UTI, finally confirmed by a culture last Friday, was treated one time with IV Rocephin in the ER Friday and one tablet at home Saturday. Since she went back to the ER Sunday, no antibiotic has been given. I suspect this is why she deteriorated so quickly.


Now they are talking about her leaving the hospital. A week ago, we were all on the same page -- nursing home. A bed was found and is being held until July 1 (tomorrow). I'm amazed we found a bed in these days of the virus. Sunday my sister (has a doctorate in nursing), bil, and my husband began singing a different tune -- they want her to go home with 24/7 care. I am POA and it is up to me to make the decision. My choice is still nursing home. This morning my husband informs me that he never felt she should go home, so his fight with me Sunday declaring that mom should go home and I needed to respect his authority is now not even in his memory (or he is gaslighting me again).


Anyway, I now feel myself between a rock and a hard place. If I decide nursing home, then my sister will probably cut off all relationship with me for a while (it has happened in the past). She has already sent me guilt-tripping texts messages. "If the nursing home is going to quarantine mom for 14 days, she's going to get very little attention there until she dies a lonely death in an unfamiliar place." One home care agency turned dad down yesterday, said mom would be better off in a nursing home. Another agency failed to return my phone call until 8:00 p.m. last night, and then failed to send the email that was supposed to be sent at the conclusion of the phone call. And she said she couldn't have 24/7 care in place until next Monday at the earliest.


So obvious to all (except my educated sister and bil) is that mom needs to go to a nursing home. We are told that she should be allowed pleasure foods such as chocolate pudding, always knowing there is a risk of aspiration. In that case, she may not survive long at home or in a nursing home. The question I am wrestling with is, do I honor my father's expressed desire as well as my gut feeling that she should go to a nursing home and risk the future relationship with my sister, or do I take my sister's advice and bring mom back to her home?

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Nursing home with Hospice. Unless you can find a hospice organization with a facility.

Your mother will get better, more professional, more SUPERVISED care in a NH, even if quarantined.

Unless your idiot sister is going to be on site at home to supervise, protect your poor father and be as annoying as she sounds.
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graygrammie Jul 1, 2020
I found out yesterday that the nh is not allowing hospice workers in at this time, they are doing virtual visits. And I do believe the care will be better in a nh. My sister is self-quarantining because her husband has been treated for cancer.
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Nursing home.
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I feel her UTI was not taken care of properly. My Mom was put on a drip for 3 days. So, I see that UTI resurfacing.

Can you tell family that its just temporary until Mom gets her strength back and she is no danger to Dad. I mean really, your sister should be thinking about your Dad. The stress this will put on him. Sleeping with one eye open. Mom needs more care than he can give. And Dad, his motive is probably out of guilt. But he is too old for this kind of caregiving.
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graygrammie Jul 1, 2020
I have brought the UTI up in just about every conversation with hospital staff. I get nowhere. We have a conference called scheduled with the hospital's hospice representative who will hopefully be the voice of reason that my sister and bil will listen to.
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You’re making the right choice.

If sister is so scared for Mom, then she can take her in, right?
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graygrammie Jul 1, 2020
No, she is self-quarantining because her husband has been treated for cancer and working many hours from home.
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Don't be bullied into making a decision that you know is not right.

If Sis feels so strongly mom not go to a NH, let her take her home with her.

Mom has passed the "I'm OK alone' stage.

And why does BIL even have a voice in this? I know my input about my inlaws was ignored and rightly so. (Unless I was offering free care).

Mom needs to get better before a long term plan of action can be put into use.

As POA you are going to have to grow a thick skin!
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graygrammie Jul 1, 2020
You are right. I am too much of "try to keep the peace" person rather than "let's rock this boat" person. My sister can't have her at house as she works 50-60 hours a week from home and is self-quarantining due to her husband's cancer treatment (I don't blame her for that, they are following doctor's orders). I really don't think mom will be getting better.
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Have you spoken to her doctor at the hospital about whether the UTI is still being treated?

The thing to worry about here, I think, is that the CORRECT medication orders follow mom to wherever she is going and that the medications get ordered and delivered in a timely fashion.

I cannot think of ONE TIME when my elderly mom was discharged from the hospital where the medication orders were not incorrect in some way or where the NH was unable to fill the ordered meds quickly enough that mom did not miss at least one dose.

Be aware of the fact that home health care really can't be set up until the patient is back home, meaning that your dad would have to cope by himself (unless sister is willing to put her life on hold and move in) for at least 48 hours, more likely until Monday.

I like the idea of telling everyone that this move to the NH is temporary until you see to what extent mom recovers her previous abilities.
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graygrammie Jul 1, 2020
I've brought up the UTI with every hospital staff member I have spoken to. They all come back with, "No, she isn't being treated for a UTI. She doesn't have one." When asked if a culture was done, they tell me they can *see* that she doesn't have one, no need to test. Apparently my mother is off all meds -- pain, seizure, heart, blood thinner, etc. It is crazy to me.

And I was not aware that home healthcare could not be set up until the patient was home. And I've been thinking we can't bring her home until something is in place. Sounds like a Catch 22.
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It sounds like nursing home is the best choice for your mom. Ask the nursing home if there is a way around thev14 day quarantine. I recently moved my mom to Memory Care. She had to have 2 negative covid tests. She did one 2 days before move in and one day of move in. Once she got the first negative test result she was off quarantine. Luckily her first test result came back quickly and she never had to quarantine. The test was uncomfortable for a moment but that was better than quarantine.

Jjust keep telling you sister this is best for mom. Even though this is a hard decision for us to make, this is best for mom. She made you POA for a reason she trusted you.
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Sis has a choice to make. She can come and stay around the clock with your Mom at home or Mom goes to the NH as your Dad has requested. His safety is your first concern now. You have enough on your plate with your husband, and do not need to add to that. Yes, the 14 day quarantine will be difficult, and it is possible she may not make it through that, but that is a risk all are having to make. I recently lost my mother after a UTI. She had battled them for years, and this time it was an enzyme that really did a number on her. She too received a IV antibiotic at the hospital, but we were told it was possible the enzyme would rear its ugly head again and it did very quickly (five days). She died 11 days into the NH. Due to hospice services being involved we were able to see her briefly each day because she had a negative Covid test.
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graygrammie Jul 1, 2020
I'm sorry for what happened to your mother. I will have to learn about this enzyme. Mom goes to the NH on Thursday.
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GG, I'm sorry for your sister's troubles. But I don't see how Home Health care can work in a situation like your mom's.

Things may be different where you are, but we were never able to set up doctor-ordered HHC until after mom had been discharged. We hired private "Visiting Angels" but this was to keep mom from going off the rails with anxiety, not skilled care.

Are they basing the "no UTI" on her behavior, or the color and odor of her urine? I would insist on a culture because the start and stop antibiotics are a recipe for an antibiotic resistant bug to move in.

Is mom still mobile? Can mom and dad afford 24/7 health care workers? Will they stay if mom becomes violent again?

Are they saying that mom has progressed to end stage dementia (which might be indicated by her extreme swallowing issues?).
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graygrammie Jul 1, 2020
I did find out that home health care agencies won't even consult until the patient is home. It is totally out of the question. And yes to your question about the UTI. And I have requested a culture. Mom was more mobile today than the last few days, I was told. But not to the extent that she can walk around safely, even with a walker. Last Tuesday night, she was walking the halls with her walker. Today she went from the bed to the geri chair, the greatest distance she has done in five days. Dad can afford 24/7 but since we can't them, it doesn't matter. Until last week, the word "dementia" was never applied to mom. This is a very sudden (and I think erroneous) diagnosis. I'm still saying her swallowing is an indirect result of the UTI.
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Nursing home with hospice. If I could not deal with the sister then I would give up the POA and let family who wants to deal with guardianship and decisions to DO IT ALL and handle every second of it. You already know the best decision. This is no longer about "honoring wishes". This is about reality.
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