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Everyone has been so helpful on this forum in terms of questions on UTIs, thank you!!


We're now at hospital stay #3 with this stubborn UTI but they are finally telling me it is gone, the culture has had no growth in 2+ days. My mother is stable and calm, though I cannot see her because of COVID visitation restrictions. The caseworker, of course, wants a discharge plan asap, but since I haven't seen my mom or even spoken to her, I need a lot more information to decide what is next; I'm not getting a clear idea of what the hospital believes will be her level of care...


My question is: bring her home and get temporary 24-hour care and hope she stabilizes further before broaching an ALF or nursing home? or send her straight to a nursing home?


Even though she is confused and speaking nonsense, the moment she hears or sees my brother or me she gets very aggressive, very accusatory. Before this recent hospital stay, she was nearly 4 weeks at SNF and the last few visits I couldn't speak to her because she wouldn't stop yelling nonsense at me. Now at this particular hospital (w/ no visitation), the nurses say she is calm but when they mentioned last night we were on the phone she claimed we weren't her children (I'm guessing still confusion), and we could hear her yelling from her bed.


The reason she was sent BACK to a hospital was because at rehab they were giving her the COVID shot and she got so agitated she declared she wanted to die... and that was it. Immediately to a psych ward where they discovered her UTI was still present.


We have days until they discharge her. Do I bring her home, get 24-hour nursing and take it week by week and then see if she lets me in a little to try to convince her that an ALF is where she needs to be? (and sign a POA)


Or do I send her to an ALF now, which I am sure very few will even accept her with her behavioral issues? Do we risk this and send her somewhere none of us want and may be subpar?


To give context: we have private funds for temporary help & we have NO POA... it's been a battle for the last 2-3 years for her even to consider it.


I realize no one can give me the right answer here... I'm just so afraid of making a decision that will keep her in this agitated/confused state and not provide her some peace.

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You will NEVER have a better opportunity to get your mother into a facility than you have right now. Discharges from hospitals take precedence over waiting lists which can be YEARS long.

If the facility doesnt work out, you can always bring her home. Once she is in your home, you may NEVER be able to get her placed, especially without a POA.

If she has private funds, make sure that the place you are sending her to for rehab will accept Medicaid after a period of private pay. Make sure that they have a geriatric psychiatrist who visits on a regular basis. Many places have AL, Memory care and Skilled Nursing all in one campus so that "moving" to a new level of care is less stressful than moving facilities.

We were blessed with a GREAT discharge planner who looked at mom's finances, her interests and made us a list of 3 places to look at, but pointed to one in particular and said, "I think this may be what youbare looking for". It had previously been a Catholic run facility, had a priest on staff, lovely chapel snd visiting nuns.

Good luck!
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primiana Mar 2021
Thank you!! Dealing with the case worker at this hospital has been a MESS. She keeps telling me that she doesn't know what the doctor recommends and that I have to talk to them, but I am NOT a doctor or a social worker so I have no clue what is best in terms of care. She has offered no assistance, and even worse, when I asked for a list of ALFs she says that stuff is outsourced, that she "knows a guy" who knows places. I can't stand how this healthcare system works... no one talks to each other! It all falls on the patient's family. It's just not right.
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I very much agree with your thought process. Any move is likely to be disorienting at best, and for now she isn’t able to identify you as family and it’s precipitating her agitation, so to move her home where you’ll have to manage her care would be a tough one.
A facility to facility transfer will probably be best. It sounds like you will need to track her doctor down. I find it helps me to write down all my questions and repeat back to them how I understand the situation. I would play the old ‘if this were your mom, what would you consider as the best options’. Also helpful, ‘I feel like the SW is a bit overwhelmed and we’re not getting much actionable information from them to help with our decision making. I’m going to name these facilities, are there any here that you would prefer to see a family member in, or any that you see more readmissions from?’ If you’re still at a loss after talking to her doc, you may also want to see if she has a care manager assigned or a discharge navigator assigned, and see if they can discuss the above.
Good luck!
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My vote goes to placement. This is by far the easier way for both of you. And if Social Services know NOW that this is the way of it, then they can be of much more assistance in placement directly out of the hospital.
Only you can make this decision, but I honestly think this would be easier on her. It could be that this is "the level of care you need now; we can see in future what level of care you might require."
I do not think that ALF will accept, but MC facility "may". Speak with Social Services now and I would be FIRM in my saying coming home isn't an option, and there must be placement and you need their help with knowing level of care she will need.
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The doctor may not have communicated with the discharge worker because S/HE is not ready to discharge.

The discharge planning unit starts work the minute the patient is admitted, because the discharge decision is often made very quickly by the doctor. Like, doc decides at 7 am (when doing rounds) "patient can be discharged today".

See what the doctor is thinking.
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I'm sorry for this distress. Please understand there is no "wrong" answer here! One question for you: what do you mean by "stabilize"? Because this may not be a realistic (or even possible) expectation. If this is the only reason to bring her home, I'm not sure I would do it if she gets agitated no matter what. I would have tempered expectations about having a rational, calm conversation about a facility or signing a PoA. Maybe her doc can first try some meds to address her agitation before attempting this discussion.

This will probably not be her last UTI, either. My MIL (in LTC in a nice facility) had one literally every other month. Once when she was finally cleared I purchased Mannose-D for the med staff to give to her every day. This cut back her number of UTIs by at least 75%. This is a simple sugar supplement so there is no downside to giving it, she will just pee out any excess.

If you can't get her to sign a PoA it may be best to have her go directly to a care facility. She sounds like she needs more than AL, though. The facility will determine if she is more a candidate for MC. Her doctor (or the facility physician) can maybe prescribe some meds to take the edge off her agitation for her own sake. You are not responsible for her agitated state. Has she been diagnosed with dementia? Have you/would you consider guardianship to continue managing her care? Lots to ponder but first figure out where she should go from the hospital. I wish you clarity and wisdom and much peace in your heart.
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primiana Mar 2021
Exactly, Geaton777! I have no clue what "stabilized" means and the hospital think that's sufficient to just release her. It's crazy to me that these hospitals can just discharge people without any kind of clear parameters or definitions about care.

This is all very helpful. I think my desire to keep her happy is overtaking "what is best." But I need to put myself in the situation of: "What is the worst thing that could happy under my care, and can I handle that on my own?" The answer is no. I cannot provide her best care if she's at home, even with nurses coming and out of the house.
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Re: stabilizing. Hospitals are for acute care, not ongoing, chronic care. Once she is no longer in need to acute medical/psychiatric care, she can be released. But it has to be safe.

Primiana, some suggestions

FInd the Patient Advocate office at the hospital and tell them you are being jerked around.

Call the nusing station on mom's unit and ask for the Hospitalist who is in charge of mom's care to call you.

Ask:
When do you anticipate discharge?
What level of care is needed right now?
What is the prognosis for the next year?

Ask Miss Caseworker (is she part of Discharge planning, maybe not) how the Hospital plans to make a safe discharge.

See an Eldercare attorney and ask advice about dealing with the hospital. The words "I'll have to discuss that with mom's lawyer" can be golden.
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It won’t be your decisions that do or don’t cause her to be agitated or confused. The hospital staff owes you better information. Great advice below...
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primiana Mar 2021
Yes, How is it possible the discharge case worker doesn't know what the doctor recommends for a patient, and expects me to know that? Is this normal??
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