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.
I understand not having her live with you or pay for her care. I am in the same boat. When mom gets to the place that she cannot live alone anymore, she WILL NOT live with us and we cannot pay for her care. I do know that in order for her to be placed so Medicare will pay for an allotted time, she has to be admitted to the hospital for an "incident" (fall, UTI, stroke whatever) for 3 days, then a placement will be found for her.
You are correct in not believing they will do one single thing to help you if you take her home. Won't happen. (Curious about what kind of help they said they would provide...???)
Why exactly is dementia not considered a medical reason? I kept asking but they never gave an answer. It appears they submitted her PIR or PRI to many different facilities and she was rejected. They asked if I would be willing to stay with her in the hospital so they can document positive change.
I kindly told them that was not possible. They also tried to tell me they would help me even it I took her home temporarily. Just as a poster told me they would try. I also kindly rejected that offer.
One point that gets me is many posters have painted thus hyper willingness to administer drugs. I have told them if they need to use stronger medications to relax her I am all for it. I wonder why they are being so careful with medications with my mom. Are they afraid because she is still able to articulate herself. At this point they are making her and their life harder.
I have brought up locked down facilities, but it appears she has been refused since she has already escaped from one lock down facilities. To my knowledge no facility is able to lock someone in their room and she is still mindful of her surroundings. It appears a nurse put in the code for eating area they had. She went in and took some cake because they were talking about it and she wanted some.
Don't you dare blame you for this! Team player be dammed.
This is a difficult one. Your mother is not a prisoner. If she wants to go out, she should be able to go out. The job of the facility is to provide somewhere for her to do that safely.
It is also a fundamental principle of restrictions on liberty that they must be as little restrictive as possible and proportionate to the risk they are addressing. Drugging your mother into a stupor because they can't put a keypad on the door or don't have enough staff ready to head residents off at the pass would score them nul points in that respect.
They must know the local/regional market better than any resident's relative possibly could - so, where are the dementia care facilities for people who aren't incredibly rich? What would they recommend?
In any case, they can't just pack her belongings and stick her outside. Stand firm.
I did request maybe they transfer her to a larger hospital they may have more resources aviabile to them. They tried to get me to take her to a different one. I told them you will not get me to discharge my mom. You guys could provide transport and also could inform exactly why she had to be transported.
Either way I provided her with some entertainment and something she can do with the nursing staff if she is forced to sit at the nursing station. I know they dislike me, especially because one was talking about how they care for their mom. Which is lovely, I have also seen it here. I wish I could do half of what some posters here do, but I just do not have it in me. This would be easier for all parties if I was more of a team player.
Well, this will be interesting to see what they come up with, yes? I bet it still will require your participation in your care. Continue to stand strong! Just think how many would have given in to their bullying (because that is what it is)!
Keep us updated -- you are inspirational!
I worked at a SNF that had resident's wear bracelets that would set off an alarm if they went within 2 feet of the front door. Even with that, the receptionist (who was really the only person in the front lobby) would have a hard time catching a wanderer if she was in the middle of answering the phone, updating the resident roster, accepting laundry for a new resident, guiding the ambulance transport staff who were bringing in a new resident..... you get the idea. Of course that was an expensive system to install but luckily it had been done when the facility was originally built. There might be something that is easier for them to use now that technology has evolved. Would not hurt to suggest it to the facility.
Good luck in your quest
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.
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.
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.
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.
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 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!
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!!!
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.
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.
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.
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.
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.
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?