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Over the last year, my mother (with dementia) has started to use the tactic of hospitalization to articulate her dissatisfaction with things, such as not being able to obtain certain kinds of medications at certain times. In other words, when she is not happy with something, she will say that she wants to go to the hospital. To provide context, she currently lives in an ALF, one that she has lived in for a very long time. Unfortunately, over the last two months, she has been hospitalized twice for falling because of low sodium and a UTI. These hospitalizations have been legitimate (emergency) hospitalizations. However, she's now in rehab (second round) and is now using the hospitalization tactic at the facility where she is currently getting rehabilitation. Based upon my conversation with the nurse, if a resident continues to request to go to the hospital, the facility will take them to the hospital. I explained to the nurse that this tactic of wanting to go the hospital has been a thing for a year, that she even uses this tactic at her ALF. While this provided context to the nurse, the nurse did repeatedly say that if she continues to request to go to the hospital that they will take her to the hospital. I explained to the nurse that unless her oxygen saturation drops, BP goes super high or low, fall, etc., she shouldn't be taken to the hospital. However, the nurse, again, told me that if she continues to request it, she will be taken to the hospital. Of course, this is happening two days before she will be reevaluated by her ALF. Is this normal protocol for rehabilitation and nursing homes - to take a resident to the hospital when they request it even though she's physically stable?

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Maybe you shouldn’t try to keep her out of the hospital. Maybe, if she’s in the hospital, you shouldn’t visit her. That would deprive her of the attention she wants, and MAYBE she wouldn’t want to go there anymore.

My mom was always calling EMTs or insisting that she go to the ER. She was always perky and putting the full force of her witty and charming personality out there.

One of the times that I was with her in the ER most of the day because she insisted that the tiny spot of red on her eyeball might be serious, she said on the way home, “Well, that young doctor was very handsome and very nice, but he never even touched me.”

Being the center of attention was what it was all about.

Just sayin’.
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Rhetorica Jun 2023
It does seem that this is part of the case - seeking some kind of attention. To be honest, that does sound like my mother. She is quite charming and witty. She's very persuasive. Most people don't know that she has dementia until they've sat with her for a couple of hours. I must admit that I have my own anxiety surrounding hospitals. She had a heart attack during Covid, and I have some trauma related to that. I got a call from the facility that she had fallen or had a seizure (still don't know exactly what happened). They had to perform CPR on her. I really wasn't expecting to see what I saw at the hospital. Really, they shouldn't have allowed me back in her room. They sedated her and intubated her. There was blood all over the place. Because it was during Covid, only one person could be back in the ER. So, I was alone in the thick of it. The nurse started to have to help me because I was absolute wreck. But, I also don't want her going to hospital because, well, there's not much they can really do anymore. Some of her specialists have spoken to me about end of life care goals. So, at this point, I'm kind of focused on quality versus quantity.
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Okaaaay, so this AL wants your mom out, basically that’s it. So start looking & ASAP. Personally if it was me, I’d get a fresh needs assessment done asap and base her placement on that. If it’s a NH then it’s a NH with Medicaid beds and she private pays till she very quickly runs out of her $ then she files a LTC Medicaid application.

As they want her out, find the contract and see exactly what the terms are for exit are…. Do they require a full 30 Day Notice? Or 60 Days? Because they are going to expect mom to pay every cent of it. Unless she transfers to the MC that is a sister facility with the same ownership, I bet. And look over whatever costs upon exiting there will be, like carpet cleaning. If your mom has loads of stuff in her room, you & your partner each take a box & a small trash bag this weekend and fill both. & every visit thereafter. Be ruthless in this. If you flat cannot do this, get someone in your circle of friends who is a big no nonsense personality to go with you to give you the stink eye till you fill that box and fill that bag… completely. Remember LTC Medicaid means shared room.

& on the “leave a good impression / architectural look” of a place, well, ya know, the place your mom is in currently knows that this kind of stuff matters to you and they have sized you up accordingly. They are oh so not going to cut your mom or you a break on costs if they can help it. So try to dial it back when looking at new places and make it abundantly clear on places you & your partner tour that mom when she runs out of her financial resources will be filing for LTC Medicaid program. Facilities may want to see her “awards letters” from SSA and other retirements as those will give them an idea of what her copay or SOC will be to them once she is on LTC Medicaid. They will find out eventually. Imho might was well know from the get go if running out of $ is a matter of months not years. Good luck in your quest.
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Whether this is normal protocol across the board or not, it's apparently normal protocol at THIS particular rehab SNF who can indeed decide to send your mom off to the hospital if she makes enough of a fuss. It's their call.

Furthermore, when the nurse from her ALF comes by to do the assessment for reentry back to the ALF, she may determine mom no longer meets their criteria and now requires a higher level of care in Memory Care Assisted Living or a SNF. That's exactly what happened to my mother after a week in the hospital w pneumonia, then 21 days in rehab where she went into a wheelchair fulltime. The nurse from her ALF where she lived for 4 years decided between her dementia progressing and her mobility issues increasing, she would only be a candidate for their Memory Care bldg. So that's where she went, much to her disappointment and at a much higher monthly cost. It turned out to be the right move, just about 6 months too soon.

Best of luck to you. I know how hard the whole situation is, in reality.
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Rhetorica Jun 2023
I'm starting to have some suspicions related to the ALF. I was told that her current ALF was going to evaluate her on Thursday or Friday. So, I called her ALF. I was then told that another sister location, one closer to the rehab facility, was going to evaluate her because the nurse at her current ALF wanted to save herself a trip. To me, this seemed odd because this hasn't stopped them from evaluating her before at this rehab facility - even during the pandemic. I also know that the sister location has a dedicated memory care unit, but we can't afford memory care. I keep on telling myself that maybe I'm reading too much into the sister location evaluating my mother, but it does seem odd to me. If she can't go back to her current ALF, she will be, in essence, homeless. Of course, she could stay at the rehab facility, but that would be us filing for long-term Medicaid.
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If she goes to the hospital and they can't find anything wrong they can treat, like an infection etc, they will just send her back to the ALF or rehab
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Rhetorica Jun 2023
I wish I could say that these experiences have been more common for us, but it hasn't been. Once they draw labs, they hospitalize her. Sodium is a little low; iron is a little low; potassium is a little high. Out of all of the times she has been in the hospital, I think they only discharged her twice without being hospitalized for something. And when it's levels, they keep her in the hospital for long periods of time.
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Sorry your mom is having such issues. And that you are having trouble keeping her out of hospital. Do you have POA for her? Is her dementia bad enough for her POA be activated? If not activated yet, might want to get her evaluated to get it activated, if appropriate. This does not solve your current situation but I would talk to the Director of Nursing at rehab or someone in a higher level position about you not wanting her to keep going to the hospital. Going to the ER is time consuming and boring and can get you exposed to bad germs.

I have POA activated for my mom. She lives in AL and has mild/moderate dementia. I have said yes to going to the hospital after an unwitnessed fall. I couldn't go there to be with her that day and she had covid so it was kind of a disaster and totally unnecessary. I decided my new answer will be no. Can we transport your mom to the hospital? No. Unless they can convince me that she has some real reason to go. Not "just" because she fell.

Best of luck.
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Rhetorica Jun 2023
Yes, we plan to talk to the care coordinator at the facility tomorrow. I don't want another hospitalization. It places so much distress and duress on her, myself, and my partner. Every time she goes to the hospital, she experiences delirium. And, to be honest, there's nothing that they can do anymore. Really, it's about management at this point. She's got heart failure (ICD/pacemaker), COPD, vascular issues, liver issues, kidney issues, GI issues, dementia, etc. Yet, she still carries on - stands, walks, dances, goes to the bathroom on her own, etc. The first hospitalization, which was at the end of April, was definitely warranted. She really messed herself up big time. She dislocated her right shoulder, fractured her right arm, banged up her right knee, fractured her left thumb, and banged her head. She was only in the hospital for four days. The second hospitalization, which was related to UTI, was somewhat unnecessary. They saw her sodium had dropped a bit again, but they didn't think it caused her fall (thankfully, no extra breaks or bangs), but they kept her in the hospital for 9 days. Meanwhile, I live about 45 minutes away, so I was having to drive back and forth from my home to the hospital. Thankfully, I'm not working at the moment otherwise I wouldn't be able to be at the hospital on a daily basis. I'm a contingent faculty member at a university, so I do have summers off (although I had planned to teach a course this summer - need the money).
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Maybe & hopefully I’m wrong, but I’d be concerned that her current AL wants her out. That by their sending her to the hospital they were/are hoping she’d be admitted & hospitalized then off to rehab in a NH so out of their AL entirely OR it enables them to use the line that they cannot meet the level of care she needs in AL and they will not take her back from the ER/ED hospital runs, but will say to you that she can transfer to their MC without having to pay out the rest of this month because they so do enjoy having mom as a resident.

That mom does not herself have the $ is beside the point. They may not know that, but to admissions it’s not relevant, they view you & your hubs as able to afford it, after all you are a college professor. They think you will pay…. they have $ized you up.

You can refuse to pick your mom up from the hospital. Mom then becomes a problem for the discharge planner at the hospital. Although the discharge nurse will heavily lean both the AL and on you & other family to come & her. What happens next really interdependent on what her health is like and what custodial care programs your State Medicaid pays for. LTC Medicaid in a NH is the main one but there are waiver programs that pay for others depending on your State.
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Rhetorica Jun 2023
After the meeting that I had today, I do think they want her out. It's funny because, in truth, professors in the humanities don't make the kind of money that people imagine that they make. I'm not a tenured or tenure-track professor. I'm a contract professor, which means I have very little job security and make far less than my tenured and tenure-track colleagues. The facility knows what I make because I told them what I make because I have to remind them every year when they increase the rates. My mother private pays. My mother is a retired educator - has a pension and social security. Since the meeting went poorly, my partner and I (LGBTQ) have a few places we might be able to call. They're not the kinds of facilities that leave a good impression when it comes architecture, but they are still ALFs. So, we shall see.
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Is your mother's anxiety being treated?

What sorts of medication is she seeking that she's not getting?

I would ask for an evaluation by a geriatric psychiatrist. It seems possible to me that her anxiety is ramping up because she's not getting enough care/structure/attention.

Dementia is progressive. It may be time she went to memory care.
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Rhetorica Jun 2023
Well, that's the interesting thing about it. She was on xanax three times a day, but because of the falls, the internist took her off of the xanax in the morning and afternoon because of the fall risk (and she complained of being dizzy). In truth, I don't think the xanax was helping her, but she has been on xanax for close to 15 years, so I don't think we can take her off of it completely. Her prior PCP tried other kinds of longer lasting benzos but she can't take them because of liver issues. She now only takes xanax (and melatonin) at night. We've tried other kinds of medications, antidepressants, mood stabilizers, etc. They cause her sodium to drop. We tried trazadone but it caused excessive edema. The rehab facility, I think, is trying to help her. They did conduct a psychiatric evaluation, but nothing was changed because of the sodium issue. I will tell you that she is bored out of her mind, which I don't blame her. Her current ALF has tons of activities. She also has friends there, etc. Memory care has been brought up, especially, with this rehab visit. Unfortunately, it's out of our price range by a lot. She private pays for ALF. Technically, she's already priced out with her current ALF. I plan to have a meeting with the administrative staff at her current ALF tomorrow. They used to provide memory care before Covid. Now, I'm not sure. The rehab facility (and nursing home) have said that she's too high functioning to be in a nursing home setting, and I'm trying to find ways of not going down that route for the now.
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I would talk to the DON. Tell her sending Mom to the ER because she requests it is a waste of your time and money.
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Rhetorica Jun 2023
We did speak to the social worker, and I think we have nipped it in the bud for the now. Now, we are onto more pressing things, such as if her ALF will take her back. I had a meeting with them today, and I didn't leave the meeting feeling very good about things. It's become a bit of a messy situation with increasing expectations from the facility. Originally, they told me that she needed to be a 1 assist. She's above 1 assist - can stand, walk, and use the bathroom on her own. But, now, she needs to be able to do other things. There was even a conversation about her shoes and socks - that she needs to wear x or y shoes and x and y socks. Not that shoes and socks aren't important, but I just feel like they're making excuses to not accept her back. Based upon the rehab facility, they have decided that she doesn't need memory care. She can do almost all things on her own, except the showering bit (needs a little help). She's waffling between aox3 and aox4. But, the current ALF, seems to want to find reasons not to accept her back.
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Apparently the nurse is attempting to tell you that it is the policy of this particular rehab to take a patient requesting a trip to the hospital TO the hospital.

You can understand, I am sure, the liability involved were a rehab to refuse to transport a patient to the hospital when they request it. It is not up to the rehab to diagnose and decide your mother's level of need.

I would allow the rehab and the hospital itself to handle this. You have made your wishes known, and apparently, for some reason neither you nor I can fathom, it is the policy to transport the patient to the hospital. We cannot know what symptoms your mother is giving the nurse; you don't mention the severity of your mother's dementia, but it does come to a sticky situation when workers are asked to take on diagnosing NEED in a patient with complaints.
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Rhetorica Jun 2023
Thanks for the response! I can't really quantify my mother's dementia. About three years ago, the facility conducted a cognitive test. Her PCP determined that she had mixed dementia. She then placed my mother on memantine. Several months afterwards, she suffered a heart attack. After the heart attack, another evaluation was done. They diagnosed her with mild dementia. When we have spoken to doctors (including various specialists), they haven't really been able to provide much insight when it comes to her dementia and, to be honest, don't really seem to care. CT scans have been done, which have shown that her gray matter has changed. She does see a psychiatrist, but like most things during Covid and after Covid, the psychiatrist comes in via telehealth. I have only spoken with the psychiatrist once. As far as the psych eval at the rehab facility, I wasn't notified that anything has changed. Her PCP now thinks its moderate dementia. As far as how it expresses itself, she fixates on things, asks repetitive questions, calls a lot, forgetful (short-term memory), becomes slightly paranoid and delusional (more paranoia over delusional), and can get feisty. What she's been complaining about the most is her stomach. We have an appointment with her GI doctor tomorrow morning. She does have some GI issues. I also don't want to get too specific with her issues because I know this is a pretty public forum, and people have a way of finding things. As far as hospitalization, we talked to the social worker today about it, so I think we have resolved the issue, at least, for the now. As far as today and this evening, she was pretty chill. At least, there are some nights when she's chill.
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What are you paying this expensive place for? Let THEM make the call.
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Rhetorica Jun 2023
Are you referring to the rehab facility or her current ALF? Well, I got roped in to the whole "wanting to go to the hospital" by the rehab facility. When my mother called, she told me that the nurse would send her to the hospital, which confused the heck out of me. So, I called the rehab facility. The nurse told me that she told my mother that she would gather up the paperwork, but that my mother should talk to me first. As far as the ALF, ALFs are only going up in my region and area. I've called several other facilities in neighboring cities and towns. The majority of them have priced her out, which is a shame because she worked very hard for the majority of her life. It's unfortunate.
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