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Really appreciate your support! At this point looks like respite not happening right now. Unfortunately mom's uti is staying low level so they don't see it or believe me. Haven't heard from Area Council on Aging about what my rights actually are.

Hospital did send paperwork to respite facility for possible future respite, so yay for that. My mom does have a reliable aide on Friday and Sunday so grateful for that too.
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She's coming home in an hour, via medical transport thank God. And they did treat her UTI so I'm really mystified why they didn't admit her this time.... Maybe they really are full up with people with the flu, don't know, the health care system is often a mystery.., or a gamble, like roulette, haha not so funny...

I'm praying for that future respite. AND GOD BLESS YOU ALL FOR YOUR HELP! 🙏🏻🙏🏻🕊🕊💕💕
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Please keep us posted. After the recent national brouhaha about the poor mentally ill woman in Baltimore, MD who was dumped on the street in her hospital gown in 30 degree weather from a hospital, when you're feeling better, you might consider contacting a local reporter to highlight your "patient dumping" situation. Just Google "patient dumping + Baltimore, MD" to read more about the story I'm referencing.

It's just not right that you were treated like a criminal for trying to get your mom (and yourself) the best care. I hope you can take care of yourself and your mom calms down. {{{Hugs}}}
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Thank you! My mom has been talking to an imaginary person NONSTOP the whole time she's been home.
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The hospital's attitude is dreadful. Good for you for sticking to your guns so well. Someone should get after the politicians to work on providing respite for caregivers. You all are saving the country a lot of money. ((((((ugs))))) Here's to respite for you soon!
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What a screwed up system and by the sounds of it you found the healthcare workers who don't actually care about their patients on top of it all! Make good notes, take names, I hope you have the name of that nurse from last night that treated you like crap and then called Social Services on you. I know you aren't up to it now but film yourself so whatever you can to prove how sick you are right now and film mom too if you want (I'm not sure if she's still showing the signs of UTI) so that when you are a little stronger you can go shout it from the rooftops, take your story to the press, find someone to take on the story and it shouldn't be hard for them to find more than enough backup on the difficulties of being the caregiver as well as the signs and symptoms of UTI in the elderly and elderly with dementia. It's time to make people take notice and call out these heartless people who are supposed to be caring for the sick, the ones giving nurses and health care professionals a bad name. For every bad actor there are probably 10 good ones but of course that one bad apple is the one that sets the rep for them all. Sorry for the rant but this infuriates me, selfishly I hope you have it in you to pursue calling them (the people that treated you like crap) and the system out on this but if you don't I completely get it and you shouldn't feel obligated or bad in any way for opting out and simply trying to care for yourself and your mom. I know that's a full time job plus. Hang in there, good for you sticking to your guns and taking care of both yourself and your mom.
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Question I have for you is are you willing to ad lib next time should this happen again?
Way too stressful for many people!
Can you make a Plan B ? 

I will bet this situation is not going to be over for you. Be prepared just in case APS follows up. 

It’s up to you to devise a contingency plan in the event something occurs like this again. 
It’s either you can take care of your mother yourself or place her where she gets the care she needs all the time. Hospitals these days are not equipped to provide respite care to you especially with no diagnosis- negative UTI. I will bet you get the bill for this stay as well. She wasn’t admitted, there is no code they could use to get reimbursement. 

Doesn’t seem like this was well thought out. A positive outcome would be planning for episodes like this in the future. God forbid your mother gets the flu from lying in a hospital gurney in a hallway for hours. So sad. 
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Shane1124, please do not respond to this thread again. I experience your feedback as unsafe.
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Hello, again. Alas, this is not over yet... The hospital sent my mother home still sick, she was hallucinating and now she has fallen out of bed and is bleeding slightly from her head. .... I'm trying to reach the nurse supervisor before I send her to the hospital again but she is in a meeting... The nurse I talked to said it was impossible that the hospital had ever done anything inappropriate because they never do... Oy... I may have to take her to urgent care in order to be safe. I don't know if they will x-ray her head... Guess I'll call them...
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This just breaks my heart. And it angers me too. I'm sitting at my desk at work and I should be working, but I'm thinking about your story and what you and so many caregivers like you are going through. I feel like this could become one of those situations where someone on the outside could look at you and make nasty comments about being an uncaring daughter and not living up to your responsibility to you mother, and blah blah blah. But they would be wrong (in my opinion) to judge you without knowing the full situation and without ever having gone through something like this themselves.

This is one of those situations that you just can't understand and have compassion for fully until you've been there, done that. I don't have any words of wisdom for you, but I have been there, done that, and I have compassion for you. The system is so messed up in this country and as the baby boomer generation gets older I think we'll see more and more of this kind of thing. We need a revolution in caregiving in this country.

My mom had severe (with psychosis) dementia. I had her (who needed 24/7 supervision), and elderly father with Parkinsons and 3 kids to take care of. One day I snapped and took my mom to ER and told them I couldn't do it anymore. They at least kept her for 3 days, but the social worker didn't do much to help me during that time to find a better solution. I just don't think she had much experience in dealing with this kind of situation. Again, as our society ages I think this kind of thing will become more common and hopefully more social workers and medical staff will "get it." Until then, my heart aches for everyone out there in this situation.
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I feel a need to address the bigger issue here -- does my mom belong in a nursing home?? I agree it is an excellent question to explore. The answer has been "no" because the only time she is disoriented is when she has a uti, and up until now the aides and I have been able to keep her safe.

Now, though, I'm going to get bars for the bed, to be used when she has a uti. That will make a big difference. I will do that as soon as possible.

Today, though, I'm just praying the hospital does its job well and provides good care. 🙏🏻🙏🏻🕊🕊

Thank you for your support
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Hello, goodenergy. I hope you are feeling better, and that your mother is too. I have not yet experienced a like this with my mother, but twice I spend a night in the ER with c. dif, and had my parents not been able to look after my daughters, I have no idea what would have happened. I expect you are thinking of a plan in case you both get sick again. Wishing you luck--it must be a very hard situation.
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Just wanted to finish out this thread... This whole incident was very upsetting! ... Basic answer here is, hospital absolutely refused to treat her in the ER, much less admit her! ... I don't think this is even legal for them to do, but the experts at Council on Aging and Alzheimer's Association tell me that hospitals are a law unto themselves-- which has certainly been my experience. When they decide something on purpose, competently or not, no agency or ombudsman or expert can make them change their mind, usually won't even try... Hence, the popularity of lawsuits as the only recourse, after the damage has been done. Seems very sad, and crazy... Certainly very difficult and unpleasant and sometimes heartbreaking for those of us trying to get competent care for our loved ones.

It made me angry. I called the local television stations (no response yet), and also made a small stink with the hospital administrator's office. Because of that, and only because of that, the hospital sent a doctor and social worker from outside the ER to try to find a solution... which, God bless them, they did.

The doctor sent a prescription to the drug store for an antibiotic for the uti, which my daughter had to go and get, because the ER refused to treat her. Wow.

And they found her a respite bed in the rehab next door, where she has been several times before, mostly well taken care of. So far, so good...

Then the doctor gave my daughter and I a lengthy lecture about how we must put my mom in Long-term care because she would NEVER be treated by or admitted to the hospital ever again. According to her, these are "Medicare rules," because "your mom will never get better she will just get worse." This statement is not based on any facts or experience, either from my mom's previous hospital visits or from her doctor. There are no facts at all, medical or otherwise, which back this up.

Medicare and the experts say they don't know why or how the hospital thinks they can do this -- but it is best if I accept it. Or talk to a lawyer. Which I might do.

I never used to care so much that the world is a crazy place. Nor did I used to bump up against it so personally, so often... Has the world changed? Or have I?? Or both....

I'm not sure I can care for my mom at home in the context of this crazy world -- very few aides available consistently, hospital refusing to treat. I have bought myself some time to research and consider.

Thank you all for your caring and support. I hope my experience report here can help others. 🕊💕
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I imagine the hospital is trying bully tactics because they see this as something they need to nip in the bud for fear they will be flooded with people who are being cared for in the community, perhaps they already have been and your mom's case was the straw that broke the camel's back. Logically there must be a protocol in place if you had been in a car accident or something, I think that part of the push back might stem from you trying to make an end run around the rules and procedures that are in place. Has anyone suggested to you what they think you could have done differently?
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Good, you are not going to like my answer.

A hospital is a terrible place for a dementia patient. Every hospitalization set my mom back 10 steps. She never recovered from the cognitive ground she lost with each ambulance ride, each "new" ER, new set of nurses. For the last two years of her life, we refused to send her out and insisted everything get treated at the NH.

You wanted to send your mom to the ER and hospital because YOU were ill. UTIs do not require hospitalization. The require a urine test and a script. Both easily obtained in an Ltc facility.
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Again, taking care of your mother is your responsibility, not Medicare’s, not the hospital’s.
To cause your mother to be vulnerable to pick up MRSA, or VRE, or c.diff or her hear ithe confusion she felt from chaos you caused sending her to a hospital ER & spending the night on a gurney in a hallway because you don’t have a back up plan is pretty sad.
I will speak when I want on a public forum. If you are not open to comments by those who do not agree with you don’t post on an Internet forum. Adults can agree to disagree respectfully. 
These days people have hip replacement surgery or knees replaced and they go home the next day. The next day! Is that fair? No! A person doesn’t even have to move their bowels after surgery these days,  just have bowel sounds heard by someone with a stethoscope. Is that good? No!  But a UTI does not require overnight treatment in a hospital. 
Healthcare is not the way it was 20 years ago. 
I will bet her confusion and hallucinations were due to you calling an ambulance and all the stimuli with an ambulance ride. Amongst other stimuli & attitudes your poor mother had to cope with, when dementia patients have minimal coping skills. 
You are so quick to blame others. You can’t see how this situation was not handled well? Would you proceed the same way again?
So sad.
I actually thought your thread was hypothetical- just to get reactions. I can’t believe it’s actually factual. 
Wow. 
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I’m not sure that actually admitting a patient for a UTI is common practice. My mom had chronic UTIs which caused hallucinations and general weakness and I could always spot them coming on. I kept a urine 'hat' and collection cups at her independent living apartment, and would bring the sample to her doctor. Then pick up the script on my way home and within 24 hours she’d be back in business. Only if she fell and the independent living had to call 911. (They we’re not allowed to pick her up or assist) and she’s end up in the er, would they treat her at the hospital either for UTI or dehydration. Have you thought about dehydration as a possible cause of the behaviors, as the symptoms are similar, and she would pass the UTI test. A few hours later she’d be treated and back home, and never admitted. Now she’s at LTC and they all get handled internally. Even when she had a bad fall (nothing broken but a bad bump on the head) I opted to have her treated at the LTC facility since Barb is correct...each trip to a hospital is a set back for the elderly. She now has a Nurse Practitioner on site that she can see immediately for issues and can prescribe and adjust meds. Please start to inquire about LTC facilities in your area, as this is probably not going to improve on its own. I know it’s a hard pill to swallow and I lived in denial for a few years myself, but it’s so much better now for both of us.
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Could we have a little sympathy here. Good was too ill to care for her mother. There were no other resources, so she did what she had to to ensure her mother's safety. I was told by an MD at at hospital not to bring my mentally ill daughter to the ER when she was harming herself because due to medical issues they could not find the in patient treatment she needed. It was terrifying. Eventually, I found if I called the police, they would transport her safely, after giving first aid if necessary, and the ER would treat the immediate medical concern. That really is an aside. Yes, Good needs to make changes, but is castigating her for sending her mother to the ER out of desperation when she couldn't been her safe such a terrible thing? People go the ER with a sore throat Saturday night, and say it started Tuesday, and it's no worse, but they didn't want to take the time to see their GP. Is what Good did worse than that?
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goodenergy: I strongly recommend you consider an assisted living or a nursing home for your mother. My Mom gets UTIs and I'm getting better at catching them early. A nurse told me when they get UTIs, the person is more susceptible to a reoccurrence. If true, then you can expect more of these to come. With your mother being 96 years old, is it time for round-the-clock care?

I understand your mother is doing well otherwise, but now might be a good time to explore that option. Best wishes to your mother and you.
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I have EVERY sympathy for Good. See my responses during the emergency. She asked if her mother should be in long term care.

The answer is yes, for Good's sake, because she has no back up for these emergencies. If mom is not going to LTC, tben she needs to have a plan B, reliable and ready, for when she, Good becomes ill.
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I would like to apologize to BarbBrooklyn and everyone else here who has comforted, supported and advised, Goodengery. However, I still think she did no wrong in sending her mother to the ER when she did, and my response was directed what I considered condemnations of her actions. I realize the focus here should be on Good and the help that she needs now, not on my reactions to other posters.
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I do not wish to criticize Good for her desperate actions, but I am going to bring up another angle. There are new Medicare rules for hospitals and other health care providers. I do not even pretend to know or understand them, but I know that hospitals are penalized financially by Medicare if they don't meet certain standards. Part of the standards deals with re-admissions and repeated ER visits. This hospital may be trying to avoid the penalties by keeping their statistics within the standards. I am not defending the hospital's actions, but there may be more to their refusal to admit your mother than you realize and the decision is out of their hands.
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Good, I am sure you were overwhelmed because you were sick as a dog with the flu. So you were unable to care for your Mother when her UTI had her acting abnormally, makes sense to me. I think you did what you had to do. In a small town, there are not many options. I know the ER has rules & goals to meet, but common sense and decency also need to rule the day.

Now that this crisis is over, its time to regroup. If you want to keep your Mom at home, is there a family friend that would be willing to step in if this double whammy happens again? Or set up the respite care now, so the paperwork is finished. Then you will only have to worry about getting her there if they are needed.

I hope you both feel better soon and can put this nightmare behind you. You’ve stayed incredibly strong and there is no better group of people, for advice, than those on this site.
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Akdaughter hit it on the head. Yes, the hospitals have "guidelines" (rules) given by the insurance companies, for who they can admit with what disease. Gone are the days (I remember) that doctors would admit you for "exhaustion" for a "rest". Nowadays, you have to meet criteria the insurance companies have set forth to be seen/treated/admitted or they will not pay. Your condition has to be near life threatening or your medical condition would result in a very serious negative outcome if no medical intervention is given. It's all dictated because of money.

I agree with the other posters, better to have a plan B, even Plan C, in place in case this unfortunate situation happens again.
No one wants to think about nursing homes, especially when the loved one is cooperative and happy. But you have to think about YOUR health, as you will need to be more vigilant with your health than the normal person because of your immune problem. Your life could depend on it.

Also, your mom will progress in her disease and life could become very demanding for you, weakening your energy reserves and stressing you out, causing a highented demand on your body.

I'm sorry you're in a difficult situation. Good luck to you both. Hope you're feeling better.
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My mother in law has recurring UTIs. She has lived with us for 7 weeks and finally signed up on the waiting list for assisted living. So, she'll be with us for another at least 60 days. I understand that it's hard for you, as I have an autoimmune disease as well (MS). I'm the main caregiver even though I work full time, as my husband works longer hours. On top of that I have a very sweet, well behaved, but hormonal, 12 year old daughter to take care of. I feel for you.
Anyways, she had 2 UTIs while living at home yet and one here (and working on another one right now I suspect) in the past 8 months. She only gets them when she is not in a rehab facility. In Minnesota and now in Wisconsin, each time she has had a UTI the ambulance was called because she gets so confused and falls. It literally happens overnight. Fine one day then boom, the next day she loses all control of her bladder and bowels and can barely move or speak. All 3 times, she was admitted to the hospital and stayed at least 3 days to receive IV antibiotics. This last time they barely detected a UTI from the urinalysis! And this last time she was the worst. So for those people saying why have her go or stay in the hospital, I highly doubt they have ever dealt with an elderly person having a UTI.
I hope you can find a place for your mom to go soon. Much like parents have to advocate for their children's health care, we also have to advocate for our elderly parent's health care.
Take care of yourself!
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Thx for your interesting answers and discussion. I just want to clarify a few things.

The hospital did not just refuse to admit her, they refused to TREAT her. She fell and her head was bleeding and they refused to give her a scan or antibiotics for the uti, because the ones her PCP had given her were not working. It was not my first choice to go back there, but the Urgent Care told me because she had a head injury they had to send her to the ER anyway.

Yes, I agree I need to clarify the situation-- I'm going to talk to the sane social worker about what I could have done differently, how to handle in future.
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goodenergy, I am so sorry for your nightmare! At 95, my aunt was considered 'normal' when she fell and couldn't walk, even though she was walking fine with just a cane just the day before. How frustrating! I was told by the Hospitalist doctor that Medicare won't cover her learning to walk, but they never found the stress fracture in her spine till I called the ambulance again 5 days later. Two days in hospital once it was diagnosed, then she needed a week in rehab. She's been ok here for a year now, using a walker, but Medicare would not pay for rehab. I did not expect it to be so difficult. Social worker insisted she should be in a nursing home. I yelled at the sw. in the ER. and I was healthy. I cannot imagine the inner strength it took for you to do what you did. The first time the modern ER does this, it takes you by surprise. Who knew ahead they wouldn't even want to treat a fall and head injury! If you are charged, suing might be your only recourse. Youhave my heartfelt sympathy.
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