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.
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.
My concern is they are going to send her to the ER.
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.
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.
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.
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?
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.
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.
Looking for new placement is not exactly an easy task. Getting her current placement was an uphill battle.
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.
If she is sent to the ER, it becomes the ER's problem to find her placement. Hope you hear from the Ombudsman soon.
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.
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.
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.
If you take her home, you lose those. She becomes your problem. Stand firm.
Why exactly can they not just place her without having me go through the hassle of letting her become a ward of the state?
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.
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.
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.
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.
Please update us as this is a real concern. The word care should be struck from the names of all these facilities.
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.
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.
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!!!
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
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!
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.
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.
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.
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.
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.
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.
You are self-protective. You don't have a martyr complex and you know your limits.
Keep up the good work.
As you said though I know my limits I would not last a month. I get annoyed far too quickly.