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My mother is fully ambulatory, just requires supervision for safety concerns. I cannot provide that in her apartment, and Medicaid does not cover that level of need.



She goes downstairs to the main lobby through the fire exit staircase, then sometimes proceeds to walk right out the front door. I understand that having someone watch her every move is not possible, but even still something should be able to be done.



I understand the safety concerns and when I ask them what can be done, they offer no suggestions. We have tried medication but being behavioral issues spurred by the desire to go home, be with family, go shopping, socialize so to speak. I will admit the activities they do are slightly juvenile, and my mother is not at that point. On the other hand, she cannot be left alone since she can harm herself or someone else.



Medications have not altered the behavior. I suggested giving her a benzo or heavy sedatives if that is what is necessary. They cannot do that for many reasons, which I understand.



She is fine with a one-to-one and they have asked me to provide a one-to-one, but I refuse to spend $29-$35/hour for a private aide. They have also suggested specialized dementia communities for those with more social desires and behaviors, but once again those are private pay, my mother has no assets, and I refuse to flip the bill.



So what exactly can be done with such a patient? I am being told I am stuck and the facility is stuck. I refuse to have her live with me, my family will not take her. They have offered help if I take her out but refuse to take any responsibility, and I do not trust them to do as they say they will. If I take her out and they do not follow through, I am back at square one. It was already a pain to get her placed in the first place.



The part that gets me is my mom cannot be the first person that has left through a fire exit. Yet they are making it seem like they have never seen this before.

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Update: Well my mother was sent to the ER last night due to complaints of chest pain, turned out to be nothing but her current facility refuses to take her back, and social work at the hospital is telling me that she has no medical reason to be placed. So looks like I may have to let her become a ward of the state. We really need better in between options. Social worker kept asking if I would be willing to take her home and pay for aids privately. Gave me a lovely list of private hire agencies, so very helpful.

When I asked what will making my mother a ward of the state accomplish, if you guys are unable to place her what exactly could the state do. They did not give me a straight answer, so I assume that means they will dump her off wherever? Why exactly can they not do that now?

Was also told placement is going to be hard because my mother requires a one-to-one sit due to being a flight risk. Overall I have just been told every reason why it is hard, but have not been offered viable solutions that do not revolve me giving up my time and money.
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mstrbill Mar 2022
Sorry to hear Sig. Politely but firmly tell the hospital SW that you are unable to take her home. That is not an option. Remember the hospital must release her to a safe environment. They cannot just dump her off wherever. That would be unethical, and you could potentially bring a big lawsuit against them. It is also not your responsibility to provide hands on or monetary support for care. Just keep in touch with the hospital and you mom, the hospital will continue to work to find placement and until they do, she will stay there.

I just want to add DO NOT CAVE IN or let the hospital coerce you to bring her home. You do not have to and you will regret it if you do.
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I needed 24/7 home care for a loved one as well and eventually found out that it's not available in my area unless she could private pay. I mention this because I want you to be careful if someone promises you 24/7 home care. Scrutinize anything you are told because people may eventually start telling you they are arranging something that just coincidentally perfectly coincides with what you're asking for and isn't that great! Once your mom is discharged to a plan you believe to be in place, she is your responsibility. In my case, the "plan" fell apart quickly and I honestly don't think there was a strong plan to begin with. It was presented to me as an airtight way to get LO home and it did seem OK at time of discharge or I would never have agreed to it. Once she is home, she is YOURS to deal with. I'd hate it for you to have caregivers not show up and you have to cover that time at the last minute, caregivers not work out and you have to cover THAT time, or find out the hard way that home care isn't truly appropriate at all (this is what happened to me). Trust me, it's very hard to get someone from their home into a facility - regardless of need. I really feel like the "system" that's supposed to help really pushed back on me. And all those people who planned this discharge for you? They will not call you back and you are alone. It really sounds to me like the hosp needs to help you place her - they do have contacts and information that you do not have. Please be careful with this.
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mstrbill Mar 2022
Completely agree with everything you said. You need to play hardball (but in a passive way so to speak) with these people. Sigh cannot cave in or else she will be absolutely stuck.
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Ombudsman was a complete and total wash. SNF is not meant for those still in the social aspect of dementia, but unfortunately the system really does not offer much that does not require a level of dependence on me to either from a monetary perspective or a time commitment. Which I do not feel it should be my place to provide. More or less what they told me.

As it stands the SNF is able to remove my mother by sending her to the ER and refusing to take her in. Which us unfortunate but it appears unless I am willing to take her in or pay for proper placement with more social and skilled care regarding dementia behaviors she is SOL.

So rip guess my mother will be playing SNF, ER roulette until something gives. It is ridiculous that places that specialize in PWD that are younger and need more one-on-one attention coat upwards of 11k.

As the Ombudsman pointed out off the record. Dementia does not discriminate but the care most certainly does. That is life.

Yes I do wish I could end my mother's life, that does not mean I want to see her needlessly suffer. Playing this roulette she is going to suffer. We have tried medication but facts are unless someone watches her like a hawk she is still extremely fit for her age she will get into things she is not meant to. That said I am also not willing to throw my own life into chaos taking on a role I know I am not equipped to handle. I would snap and could hurt my mom if I took on a more hands on level of care.
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Sigh, the hospital has resources that you don't have.

If you take her home, you lose those. She becomes your problem. Stand firm.
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Sighopinion Mar 2022
What exactly are those resources, if social work states she has no medical need, and our state does not cover AL based MC through Medicaid, and facilities are within their right to decline taking in someone. We have also explored medication, and I have been told no place will take in someone that has a documented need for having a one-to-one.

Why exactly can they not just place her without having me go through the hassle of letting her become a ward of the state?
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Sigh--you are NOT selfish.

You are self-protective. You don't have a martyr complex and you know your limits.

Keep up the good work.
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Sighopinion Mar 2022
Thanks, it is rough I found myself thinking maybe I can make it work. It was especially hard when my mom told me "I am happy around you."

As you said though I know my limits I would not last a month. I get annoyed far too quickly.
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Sig,

In my area there is a SNF with a locked down floor that is fully covered by Medicaid. The residents cannot get off that floor. Have you searched (or the NH) for a similar facility near you? If not, you need to stick to your guns, it is their responsibility to keep her safe. You do not need to pay for a sitter. They will work out a way. You may want to call the ombudsman for support and guidance.
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Sighopinion Mar 2022
In my state the fire exits have to remain unlocked even on the sealed off floors. They have her on a floor that is a large circle, but evaluator is locked off but the fire exit just requires you to hold for three seconds before it opens. They also cannot lock the rooms either and she is still extremely fit for her age. She can move. I keep telling them she is like a toddler you need to watch her or she will get into things she is not supposed to.

My concern is they are going to send her to the ER.
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Sigh,

I get what you mean now about your mom being in a SNF. She's in the memory care part. My uncle is in a SNF on the memory care floor. No one can wander off and leave. When we visit him, an aide has to come and put in a code to let us in and out because the place is locked down tight.
It's not a particularly nice place but it's what Medicaid pays for. My cousin (his son) pays for him to go to adult day care two afternoons a week because he's kind of like your mother. Not so far gone mentally that he can't still go out. The adult day care he goes to is pretty reasonably priced and it's a decent place.
If you're completely unwilling or unable to pay for anything for your mother there are different charitable organizations that might help with the cost. The United Way is one of them. Go on line and do a bit of research.
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Sighopinion Mar 2022
I will look into that, my mother's old placement advised strongly that she should not be removed from grounds. I got them to allow her to have a little garden on the grounds. I just followed their advice.

Yeah my mom's place had a key code but for whatever reason they underestimate the resolve of some people. While they were not supposed to they use to put the code around her. It was a dumb code 0991 she saw one day and that was the first time she escaped.

They thought I told her, nah your staff just leaves their guard down. Just because people have dementia does not mean they are dumb and cannot retain patterns or info all the time.
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The first facility I worked at SNF was on the 5th floor, Residents who were a flight risk wore a sensor on their ankle and would set off the alarm if they were too close to the elevator or staircase door. My 2nd facility was one floor had alarm system too. My moms facility also had alarm for elevator.
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Sighopinion Mar 2022
She does have an alarm but it does not prevent the action of her leaving. It appears that is the issue, thankfully she does not get outside anymore but it is becoming a frequent occurrence where she is doing it more often.

I asked why not put a guard or someone at the door. They do not have the staff to do that. My mother is very quick, and is determined.
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My mother sounds exactly like yours - more spry, fit, younger, and more "with it" than a lot of the other people in memory care. But she is always trying to get out and she is often upset and confused. She got out of her last facility through a fire exit as well. Now is in an SNF (just moved there) but she's in a locked unit that she can't get out of at all - there is no fire exit and no way for her to get out. They are also very open to medicating her more if necessary, mostly to calm her agitation and terror. She is medicated now but she is definitely not "doped up" - she is constantly on the move and quick and very active, and we all feel there's room to take the edge off her agitation.

Many SNFs have locked down neighborhoods for people who are at risk for elopement - it sounds like your mother is not in one like this? Maybe a different SNF would be a better fit?
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Did the ER find a sitter for your mother?

I don't have anything to add to the wonderful advice already given to you, but just wanted to know I'm one more who is on your side. You are doing the right things -- keep refusing to take her home.

Keep us updated!!!
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