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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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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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Memory care sounds like it would be a better fit for her, and as far as I know in some places memory care is covered by medicaid.
At my local NH residents who wandered wore a bracelet that locked the doors when they were close to them (a bit of a pain when they hovered near the door and you wanted to enter/exit). But that would require a financial outlay from the NH and they might not be willing to invest in that.
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Sighopinion Mar 2022
She is on the dementia side of the SNF, it is basically a MC unit. The floor is closed off outside the Fire exit. I have been told by law no facility can have said exit barred or locked. She does have a bracelet but said bracelet just triggers an alarm system. I have been told by law they cannot use bracelets that would lock a door due to it being a fire hazard. Unfortunately the alarm itself does not deter it at all.

Which is creating the problems, also the fully MC facilities that have better staff to patient ratios are all private pay, or they have Medicaid cover the medical side but not room and board which she cannot afford.

I have brought many if these suggestions up and the facility keeps telling me it cannot be done, or expect me to do all the leg work to fix the problem. Either by finding better suited placement or finding a solution.

I understand that not every solution has a good answer, that is why I said I am okay if they are forced to heavily sedate her to keep her safe and contained.
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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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I agree. You may want to find another NH that fits Moms needs better.

You may want to check with your State Ombudsman about the facility being able to kick Mom out. By law they cannot discharge anyone if its not a "safe discharge". If Mom is deemed 24/7 care and there is no one to care for her at her home, they can't force her out. And that 3 second door thing. At Moms AL it was 15 seconds. Just enough longer to help deter someone.

IMO, the facility needs to do what is needed to protect Mom. What if she had no family? How would they handle it then.
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You need to contact the state and find out what you're options are.

I was told directly by the NH manger during a rehab stint that in our LO's state, if they can GET OUT of the locked facility, they can stay out. Then they can only be returned under court order. Not even a POA allows the return. It is state law and not policy that mandates this. So the facilities options are very limited too.

I agree to start with the state ombudsman.
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I have left a message and an email with the LTC ombudsman.

Looking for new placement is not exactly an easy task. Getting her current placement was an uphill battle.
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Got a response about 19 minutes ago, was an extremely short and brief conversation. I was told it is my fault for putting my mom in a SNF when she lacked a medical need. Though when I pointed out the lack of Medicaid available facilities with MC, and asked for a solution I was just told while he is unable to tell me which ones are better due to conflict of interest, he told me I can tell you where I would feel comfortable putting my mom.

Every name he gave me only two had MC with Medicaid beds without private pay needed for a min of two years rest were private care. He advised me to take her home and try to set up home care verse leaving her in SNF with a MC floor. Since, what will happen is that the SNF can create an emergency situation and refuse to take her back from the ER leaving me at square one.

Has anyone ran into this.
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Sigh; as far as I know, there is no legal mandate for you to take your mother back into your home.

If she is sent to the ER, it becomes the ER's problem to find her placement. Hope you hear from the Ombudsman soon.
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DadIsFine Mar 2022
good info
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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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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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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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A resident who is an elopement risk, doesn't' belong in a facility that has open doors.
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Sighopinion Mar 2022
Our state fire exits even on locked down floors have to be able to be opened by anyone. They are timer locked, that is how she gets out.
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ER called me to see if I can sit with my mom since they do not have the staff for a one-to-one and she tried to escape again. Appears they had to lock down the hospital.

If I stay with her will that make it easier for them to find placement? She has never tried this with me. Granted, she is normally on her best behavior for me since I do not put up with her bull****.

I do find it hard to believe they do not have staff for a sit.
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PeggySue2020 Mar 2022
Ask them to move her to a psych floor. They are usually locked.
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Sigh,

Why is your mother in SNF (skilled nursing facility) if her physical health is good?
The place for her would be a Memory Care facility. If a locked memory care facility can be found for her, it might be possible that she can also go to adult day care a couple of days a week to get the right level of socialization for her. Years ago I worked part-time at a very nice adult day care. We took the clients on outings, shopping, and to restaurants. Of course some had to be very carefully watched because they would try to wander off. It can be compared to taking a class of kindergarten kids on a field trip. It worked. Day care would have to be paid out-of-pocket though. Maybe a Memory Care facility and adult day care could be a workable solution for your mother. The adult day care facility had all kinds of activities going on for different levels of dementia and cognitive decline. The place I worked in had a rule that they didn't take incontinent clients who were in diapers. Some places do. This might be worth you checking out for your mom.
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Sighopinion Mar 2022
Mainly because my mother has no money and Medcaid does not cover AL type MC, only SNF MC floors in our state. Every other type of MC is private pay. I refuse to use my own income, and it was extremely unsafe for her to be home by herself.

So through much effort and help of a social worker we got my mom placed in a SNF because I certainly was not moving her in with me nor was I going to pay for private aids and day services. I do not make that kind of money that I can throw it around like that.

I knew it was not the best fit but only place that was willing to take her that had aviability and took medicaid.

When my mom was in her apartment she did go to day services her mltc did cover it. They did not home home care and day services. When she started to leave the stove on, and left plastic bowls on the stove etc... I had to make a choice.
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Memory care is covered by Medicaid..........Google it for your locale.
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Sighopinion Mar 2022
Has to be in a SNF, I have been told Medicaid is for the medical side of things. If I want to place her in the MC that has less of a hospital feel with more social services offered my mother would have to cover the room and board cost. Medicaid would cover the medical side.

My mother was on a lock down floor still the fire exit has to made aviabile which is where she leaves the floor from.

As mentioned to use more specialized facilities we have to use a waiver since medicaid does not cover room and board and my mother's SS is extremely low since she did not work much. So yeah nursing home was the other option. Waiver from what I can have been told is not something many accept.
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I am reading this as my mother is now in MC due to going out window in AL. The doors in MC have a 15 sec delay and the instructions are clearly written on the door. Nurse said never had anyone go out door. So mom will be the first? The instructions are not necessary for safety. If the fire alarm goes off, all door locks are released. Financially we thought we were set to private pay 2 years then they accept Medicaid. The mc is on the same campus as AL. But no, MC is private pay only. When her money runs out we have to find SNF. She was at psych ward, but they have a policy: 3 good days and out. Yet they never saw her paranoia which is her main feature, never saw us visiting for possible triggers. MC may ask for one on one from me soon.
Please update us as this is a real concern. The word care should be struck from the names of all these facilities.
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Sighopinion Mar 2022
My mom kicked out the child guard on her window in her apartment to escape. I was like ma, I am not going to chase you.

Your situation sounds extremely similar. Did you know the psych doctors told me that her disease to escape and go home are normal reactions and medication is not ment to be a be good pill. They said I had to take greater steps to find and combat her triggers with social intervention. Using Medication to alter a normal human reaction is unethical.
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I am sorry you are going through this. It is frustrating. And you are right that your mom isn’t the first person to do this.

It is also true that you are not the first person to be asked to hire an outside aide. It happens all the time. If it is too much for the facility (it usually is because they don’t hire many staff), then they have the right to discharge your mom. They’d rather lose a resident than a massive lawsuit.

There are professionals called eldercare managers who can help you navigate this matter. Shop around and interview them before hiring one.

Good luck.
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mstrbill Mar 2022
There is no money to pay for outside help.
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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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It was a crazy evening I ended up putting my phone on silent. I will be going to speak with the doctors later today. Last call I answered from the ER they asked me how I was able to handle her at home, it appears they do not communicate between shifts. I told them I couldn't that is why she was placed.

I spoke with social work in the morning, well the supervisor and let us say they were not pleased and were trying extra hard to guilt trip me. It appears according to them what I am doing in their professional opinion is cruel. I should make a greater effort to do what is best for her and not what is most convenient.

It appears they had to keep my mom at the nurses station all night cause they did not listen to me. Alarms will not deter her end of story, she will just keep getting up. Also told them low dosage of sedatives does not phase this women, you need to use stronger and higher dosages. It appears they were not comfortable with that.

For whatever reason they do not understand if you put a one-to-one sit with my mom that she can not just walk past she is fine as wine. She is not physical, she will do as she is told. She is only bold if you do not pay attention to her.

Rounds start around 10 so will go see her around rounds to talk to the doctors. They clearly think I am cruel.

Well shall see what happens
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CTTN55 Mar 2022
"I spoke with social work in the morning, well the supervisor and let us say they were not pleased and were trying extra hard to guilt trip me. It appears according to them what I am doing in their professional opinion is cruel. I should make a greater effort to do what is best for her and not what is most convenient."

Wow. You know what they are up to! And you know they are looking for what is most convenient for them, which would be getting YOU to take all the responsibility.

Stand strong, and remember we are all behind YOU. Let us know what happens after the meeting!
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This type of situation is why I have long term health care coverage. I feel sorry for aging adults with mental decline who, just because of lack of assets, have nowhere to spend their final years.
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My mother, with advanced dementia, was also a wanderer, until she forgot how to walk. She was in a memory care unit, not skilled nursing. In memory care, the staff know more about how to handle wandering behavior. Residents wore tracking bracelets or anklets. The facility was locked and had alarms that were set off when residents got near the doors. Memory care may be set up better for your mother's wandering.
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The medical term for this compulsive wandering and restlessness is akathisia.
Evaluation by a neurologist or gerontologist could help clarify her diagnosis, and know what medications might help.
Antipsychotics often cause this symptom to develop, and benzodiazepines. create a huge fall risk and withdrawal symptoms develop very quickly.
You need a specialist who can see beyond the nuisances created by wandering, and see what can be done to help.
Good luck to you, and to your mom.
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Sighopinion Mar 2022
She does not have an intense need to move, she simply does not want to be in a hospital she wants to be home with her family and friends. I get what she is experiencing is normal for people in dementia, but her willingness, capablitles ans lack of funding making it harder to deal with.

She was mangable when she was socializing at home to a degree but the need for constant supervision, prompting, and redirection when she was alone was too much to deal with.

She has more so an intense desire to not be in a place she feels like she is in prison and does not belong.

I am aware benzos can cause issues but staying in a hospital for extended periods of time because they cannot find placement due to her trying to escape can also cause issues.

I will bring it up though when I see the doctors.
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You have to find a facility that has memory care (which means the doors are locked) and accepts Medicaid. My mom is currently in a private pay memory care facility. They are aware that later this year mom will be out of money. They have a different facility next door that does accept Medicaid and said they will help us apply for it when mom is closer to being out of funds. I do realize it won't be as nice as the facility that mom is currently in and when I say not as nice, I mean big vases of flowers, fancy furnishings, etc. The facility that accepts Medicaid is more like a nursing home for lack of better words. More sterile. But my mom doesn't recognize anything...she doesn't even know what clothing is hers, so she really doesn't care about those types of things anymore. It is more of an issue for me than her is what I am saying. There are websites you can go on that will help you find a Medicaid friendly facility. "A Place For Mom" is a good one.
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JoNelA Mar 2022
Hi James. I sent you a private message. I'm a national reporter writing about the high cost of long-term care and the decisions families have to make. The transition from private pay to Medicaid is important. I'd love to speak with you, or with others in that situation.
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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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Update:

No UTI, blood work did not show any abnormalities, CT and MRI came back normal for age. She is clear from a medical perspective. They were even considering discharging her because she was alert and aware. It appears my mother mentioned she an apartment which was true but lease expired last February. So I did make sure to tell them she has no place to live even if you claim she is alert and aware it is an unsafe discharge.

They even tried to get her to sign discharge papers I stopped them. How exactly do hospitals pull this crap? Thankfully my mom had the sense to ask me to read what they gave her. This has been an interesting day.
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CTTN55 Mar 2022
"They even tried to get her to sign discharge papers " If you weren't there, then what would have happened?
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Find a facility that is 'locked down'. She will never get out - all doors are locked for exactly this reason.
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Jamesj and MstrBill (2) have wonderful answers...
My mother went to a county run SNF where she was evaluated for 2 weeks, then needed to be moved into another section (memory care...locked, bracelet that wouldn't allow her to open doors or elevators). She was covered by Medicare (orig) and then Medicaid, and it was a wonderful place. Fresh food (always), activities (bingo, games, dancing, computer room, billard room, once a week live bands), outdoor picnics (monitored), beauty parlor, and skilled nursing care (even tho she just needed her meds, which DID NOT change her ability to focus). She was there for almost 5 years and became content with her almost private room ...wall between 2 beds (shared bathroom with shower). The nurses/aides were kind and compassionate. I hope you can find a place that's equivalent. I wish you and your Mom luck in finding a good place.
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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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I am going through a very similar situation with my dad. Long story short, I paid $2500 for a Public Assistance Consultant to handle finding another place for him. My dad has been “evicted” from his current ALF since December, but is still living there.
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