Hi everyone. I hope you are all doing well, hanging in there, staying strong!
My stepdad, 88, was admitted to a hospital after a series of bad sundowning episodes.
He has been at the hospital for over a month now and we're still waiting for a long term care facility placement for him. Two facilities denied him due to the fact that he requires a sitter and he has daily episodes of wandering and elopement. Unfortunately, those facilities don't have a secured/locked memory care unit. Meanwhile, the other facilities denied him simply because they don't have the capacity to accomodate another resident.
I flew home and took time off from work so I could assist my mom with all of this. she's on fmla leave for over a month now which is unpaid. she's in so much stress and anxiety. the first two weeks, she'd sleep over at the hospital with my stepdad despite not being able to sleep properly at night because that's when my dad's sundowning episodes get worse. she has recently stopped doing this and just visits him daily for a few hours instead.
After the denial from the facilities, the hospital case manager/social worker sort of hinted at my mom the option of discharging my stepdad for her to bring him home.
This is our first time dealing with all of this so even I don't know exactly what's happening. I finally urged my mom to consult with an elderly care lawyer. she went with my sister, and they were told that it's the hospital's responsibility to look for a placement for my dad that is safe and that caters to his needs. They were also advised that if the hospital tells my mom he needs to be discharged and she needs to pick him up, she should say no.
English is not my mom's first language and she can be very timid and shy. I worry that there will come a point that the hospital will try to intimidate her into agreeing to bring my stepdad back home.
Should I tell her to limit her visits to my stepdad at the hospital? Will that help make a statement that my mom taking him back will never be an option? Would that make them more motivated to find a placement for my stepdad? My mom also stresses so much about the hospital not yet finding a placement for my dad to the point where she almost wants me to do their job for them.
I initially thought of helping the case manager look for facilities, but I fear that doing this will just delay the process even more. Should I just let them handle this completely? Let them do their job?
I literally have been staying up all night til 4am since I got here doing research, hoping to find useful information and honestly i've been feeling so stressed out myself.
I appreciate all the insights that you guys can provide. thank you so much!
Sounds to me skilled nursing unit would be more suitable for his care needs.
Assistant living is for those that are able to feed themselves, weight bearing with light assistance able to be independent in their room with 2 hours checks. Usually the staff ratio is 1/15 one aid to 15 residents. There are assistant living facilities with locked down memory care units. Full personal care is provided. Everything is locked away for safety. All activities are geared for advanced dementia. Most are understaffed with a high use of temporary agency staff. No one gets the care that is promised when you tour the building. Food is awful. And being a resident your surrounded by others with advanced dementia can be very chaotic. The cost where I work for memory care starts at 10 grand a month the more assistance needed the price goes up. Or private duty find aids that will come to the home on your own. 12 hour shifts usually $20 an hour. There are home care agencies but the pay is low your lucky if someone shows up.
There is controversy over medication but if staying home is better don't feel guilty about having your father be put on medication that calms him down I did it with my mother. Why have them filled with anxiety and fear when with the right dosages they're not zombies but they're not trying to escape out the door yelling at the neighbors you don't feed them they're being held against their will.
Hope you find the right environment.
Oops just realized it was the hospital. They will bill, but it doesn't mean they have to pay that. If they own property and assets, they may want to hire an attorney. If they don't have much in assets, they don't need to worry about the bill, but a lot will revolve around how much equity they have in the home whether it is worth it to hire an attorney or not.
as ive stated in my last update, we declined the first facility that is willing to accept my stepdad due to the overall bad condition of the facility. i just spoke with the cm again just now and was told that since he's been in the hospital for an extended period of time (almost 2 months), they'll have to start charging him for each day that he's there. according to the cm, it's $2,500 per day.
my stepdad's only income is $800 something from social security and my mom makes very little so they definitely cannot afford this.
is there anything we can do to appeal this? can we ask for an extension of some sort?
when my mom visisted him over the weekend, she spoke with the nurse and asked for her opinion. since my stepdad has been having more difficulty walking on his own, the nurse said she doesn't think he is still considered an elopement risk and that a secured/locked unit may no longer be a requirement for him.
we thought maybe it would be a good idea to have him reassessed again by regular nursing homes, maybe they'll accept him this time around. although, i was told that his history of elopement and being combative will stay in his records.
any advice would be greatly appreciated.
maybe try the regular NH route.
not surprised by hospital, there was a facility willing to take him, but they were turned down. hospital finds out about this, and brings up the charges.
In short, they want him out of there so they can free up a bed/room.
He's about as unsafe a discharge as anyone I've ever heard of. It's already been a nightmare, and you can't let it escalate.
No to "it's only for a few days, weeks, etc." No to "we'll send help for you" because that's unlikely to happen once they get rid of him.
As you said, let the case manager do her job. Even though you've studied this, researched and tried to prepare, it's not your job or mom's. You can play dumb a little bit if you have to. Don't give in. Get what you want by being strong about what you WILL NOT do
I wish you luck in a really difficult situation.
appreciate you guys sm. thanks!
You are correct. She needs to say no. She cannot be forced to accept your Dad home and she should not do so. Once this happens they wash their hands of it all and on they go.
She needs to say she is not physically or mentally capable of this care. Ignore their social workers who will say "We can help" and "together we can work to get this done". They can't and they won't.
Your Mom needs to say NO at once and make it clear he cannot return home. Keep using the terms "This would constitute an unsafe discharge". Stess that your Mom is in no way physically or mentally able to do care in the home.
my stepdad is still in the hospital. no long term placement for him still. ive been working closely with his case manager remotely via email to help my mom with the communications. i actively help her out when it comes to looking for facilities she can refer my stepdad to, as well as veteran homes. we were even open to facilities farther away from where my mom lives.
but same thing. facilities keep denying him admission due to 1.) his condition and them not having a locked unit or 2.) the very few that has a locked unit, simply don't have availability (although one of them is for female residents only) and then 3.) the veteran homes have a wait list of a minimum of 3 to 12 months.
there is one facility right now that is willing to take my stepdad. although i spoke with the administrator, she said that their residents, on a scale of 1 to 10, when it comes to severity of their mental condition, 10 being the worse, are mostly at 8 she said based on the assessment (not sure by who, either by the hospital or by her) my stepdad is at 2. i dunno for sure but it felt like this was her hinting at managing our expectations when we go visit the facility.
my mom and my sister paid a visit to this facility last saturday and according to them, it was REALLY bad. my mom said while they were still by the door waiting to be let inside, they could already smell a bad odor. the dining are were so dirty. there was a trash can catching water drippings from a leak. rooms were very dirty as well. i don't wanna go into more details anymore but basically, it doesn't look like a near decent living environment at all.
not being picky at all with the facility but this was just a huge no no. we're not looking for anything grand, i mean we don't have the means to pay for that luxury, but we hope to find a place for him that's decent enough and clean.
having said this, the case manager has hinted that we are running out of options and that if we still can't find a facility, we may need to go the discharge to home route. i will do my best to be firm on making it known that it's not safe for him nor for my mom, to send him back home.
my sister and i are expanding our research and looking into cities outside where my stepdad lives, it may be farther 3-4 hr drive away, and we may need to pay extra for transportation, we don't mind at all, as long as we can find a decent facility for his long term stay.
anyway, do you guys have any advice on how i can tell the case manager that we don't feel comfortable sending my stepdad over to that facility? i feel like she's expecting us to say yes to that facility and have him transferred over asap.
my sister and i are really doubling our efforts in looking and doing research for potential facilities to lessen her workload even a little bit.
i've also been talking to the admin in that facility, and i'd also need to break it to her that we are no longer interested in her facility. im having a hard time figuring out how to explain to her why we made such decision. she knew we were gonna visit so she probably already know why :C
So, it all depends on how Dads finances are. Also, where a bed is available. He may have to settle for what there is.
my stepdad only has his social security. like around 850/month.
he is a vet though. and ive found two veteran homes in his state that have a secured memory care unit. just a bit far from where him and my mom lives.
we initially told the cm to prioritize looking for a facility thats closer to home but if that's the case, that medicaid might not cover it, we might just go with our last resort which is the veterans home. the two i've found are farther away from us but i guess it would be a much better option than them sending them to a regular nursing home again only for this whole thing to repeat again.
my stepdad is still at a geriatric behaviorial center. he doesn't have discharge date yet as per the case manager. she's actively looking for a facility tho. as far as we know, my stepdad needs a secured memory care unit.
the cm sent a referral to this facility that's both a nursing home and rehab however when i called the facility, they told me that they don't have a secured memory care unit.
is it procedure that when discharged, a patient stays at a regular nursing home/rehab first? or can they be assigned to a secured memory care unit right away?
i am just worried that if they place him into a regular nursing home/rehab again, he'll have another episode on his first night like what happened at the first facility, and the facility will call 911 again and he'd be taken to the hospital. im worried that this cycle will keep repeating.
the first facility that took him called 911 because on his first night there, he was being combative and was trying to escape.
this wasn't the first time he was taken to the hospital. for different reasons in the past but most likely dementia related still. but to answer your question, yeah, id say so, 9 days prior to him being admitted over a month ago, we attended this event involving my brother in a different state.
that was the first time my mom has seen him behave that way. cuz had she known, had we known, we would've advised them to just stay at home and not go.
but essentially what happened was, they were at their hotel, he told my mom he wanted to take a walk outside. so they did. they were strolling around and it was all great until at one point somewhere, he just sort of shifted. he kept on insisting to walk farther and farther. he's convinced he's back home and he knows his direction around. but to cut the story short, he ended up crossing the highway, my mom fell chasing after him. they were literally in the middle of a highway, cars passing by them. police saw them and came to their rescue. they both ended up in the hospital that night. and they both were not able to attend my brother's event the next day.
i was scheduled to fly in the next day so i wasnt there when all of this happened.
after they got back home after a couple of days, this behavior continued for the next three nights. he'd come out of the house in the middle of the night and just wander in the darkness, refusing to go back inside. there were hallucinations involved as well like calling out names of family members no longer with us. on the third night, that’s when he was taken to the hospital. he was restrained for 3 days because he was being physically aggressive.
also yes, it is confirmed that he has UTI. he was tested at the ER at this new hospital. they did a ct scan on him however the doctor does not think the uti is contributing to his overall problem with dementia so she strongly advised us to have him taken to their geriatric psych facility so they can do in-depth evaluation of him. so yeah, he’s there for a 2 week treatment plan rn. i think it's a good thing that he ended up there somehow, as a lot of you guys suggested. i really hope he gets the attention and evaluation he deserves to contain or manage his condition.
the morning after my stepdad was transferred to a facility, we were getting ready to visit him and bring him additional stuff and other necessities when my mom received a call from the facility saying my stepdad was taken to the hospital again because he was being combative and trying to escape his first night there. they also said they don’t restrain residents and thats why they sent him to the hospital instead. (im still trying to get more info on this)
my mom, my sister, and myself drove to the hospital. this was yesterday, 07/15. this was a different hospital now. the facility he was taken to is 1 hour and 30 minutes away from home and in another town.
he was in the ER and we spoke to the doctor there. she asked us if we would like to have him transferred to their senior behavioral health center which is 40 minutes away. i looked it up online. its one of their specialty care locations. its a 12 bed secured facility that serve adults experiencing dementia with behavioral changes. after some more research and discussion with my mom and sister, we agreed to send him there.
we spoke with someone in the senior center and she went over several details about my dad’s stay. so he’ll be there for two weeks. they’ll conduct a medical and psychiatric evaluation on him. once he stabilizes, they’ll send him back to the long term care facility.
im mentally exhausted and emotionally drained. :( i fly home on wednesday. my mom hopefully will have some peace of mind for the next two weeks.
I can so remember the extreme emotional response I had when my mom was transferred from rehab for her broken hip (post stroke, post dementia dx) to a NH for rehab.
I had read somewhere that the average stay in a Nursing Home was 6 months. For whatever reason, I felt that my mom must only have 6 months to live. I wasn’t ready for her to die and I wept like a baby, driving from Connecticut back to Brooklyn.
Even with dementia, mom worked hard at rehab and walked with a walker. She enjoyed going for wheelchair rides around the landscaped grounds. She enjoyed "people watching" and the religious services, activities, dog therapy and visits from family.
My mom lived, mostly quite happily, for 4 1/2 years.
Take heart. And let us know how it's going.
hi everyone. just wanted to share that my stepdad has been transfered to a long term care facility today.
will post a more detailed update tomorrow on exactly how it all transpired.
but damn, i didn't expect my heart to feel this heavy... i already cried twice since we left the hospital this afternoon. how do you even deal with all the emotions?
tomorrow, me along with my sister and my mom, we will all visit him and bring over additional supplies for him. <3
Well done helping to keep everyone from caving and letting him come home. Placement is the best option for him and your mom.
Time does make this easier.
In my city, New Orleans, there are apparently a handful of these type of patients that are long term occupants of hospital beds. From what I’ve gathered there seems to be 2 main threads as to why: obese with behavioral issues and there are zero facilities who can accommodate them and the level of very intricate care needed OR citizenship issues which morphs into insurance coverage issues as hospitals have to provide for care for those that show up but custodial care facilities are pretty much set up to take folks in under “dual” insurance coverage. Dual is Medicaid and Medicare and if you’re not a citizen (birth or naturalization) you might have 1 but probably don’t have both. Yiu might be a legal permanent resident and can be eligible for Medicaid but that’s an issue for how most NH and long term care places run. Knowledge on this is not my wheelhouse.
What seem to happen is they end up shuttling from one smaller community type of hospital with an open bed to another; often for weeks if not months of a stay. To me the big take away in this sad situation is to remember the discharge planner cannot force family to take your I’ll family member out of the hospital and into your home is if it would be a unsafe situation. But you and everyone in your family has to be 100% in unison that this is what you all will tell anyone at the hospital.
You might also want to keep on the back burner if he will require Medicaid for LTC that his income may be utilized for his care so mom will have to live on her own income. This depends upon the state where they live.
As for mom, her fmla is ending. If she does not go back she will lose her job. Encourage her to get on with her life. Her husband is cared for whether she is there or not. I doubt she is doing anything for his care while sitting at the bedside. Otherwise your life will be worse if she becomes impoverished. I have seen many spouses mess up their lives and doing nothing to help. BTW you mom may need professional help for the anxiety which is controling her behavior
this is what i've been telling her. and she does wanna go back to work. prior to me coming, the main thing that stressed her out is the whole placement issue. it was really weighing down on her. it didn't help that she was overwhelmed with new information left and right.
i was pretty much on the same boat as her but now that i have a better understanding more or less of what's going on, i've been trying to break everything down to her, in layman's term and i've been encouraging her as well to get on with her own life, not to worry too much about my stepdad, and prioritize her well being.
just one question though, based on what you've seen, is it pretty common to take this long (1 month) to find a placement? should we be worried when it reaches a certain point? 2 months or 3 months? or do you recommend to just let the hospital and case manager do their own thing until they find a placement for him however long it may take?
thank you again for sharing your insight. appreciate it so much!
I would talk to the hospital social worker to confirm this.
and yes, i just checked he still has his og medicare parts and b. we created an online account for him.
They are two VERY different things.
I'm wondering if this is why he's being allowed to stay so long. In my recent personal experience I have a cousin (69 with ALZ) who is unable to be cared for at home or by her adult children (for multiple valid reasons). She had to be physically taken to the ER for an infection (she was agitated and uncooperative). Once they go her infection under control, her son (the PoA) refused to go get her because she is an "unsafe discharge". She has been in the psych ward of the hospital since (so approx 2-3 months). She also has a "minder". She doesn't qualify for Medicaid since she is not LTC assessed (and not sure she' qualify financially). I don't know either who is paying for her care or how -- I know neither she nor her kids could afford to pay for this hospitalization... so, thinking it may be covered under Mental Health services of Medicare (and any supplemental coverage policies)?
"If the person with Alzheimer's or dementia is a Medicare beneficiary, Medicare will pay for some, but not all, care costs."
Source: https://www.alz.org/help-support/caregiving/financial-legal-planning/medicare
Here's a layman's explanation of what Medicare pays for Mental Health costs:
https://www.nerdwallet.com/article/insurance/medicare/does-medicare-cover-mental-health-services
Hope this helps!
yeah this whole thing can be so overwhelming sometimes. one day i thought ive figured everything out already, the next day its like starting all over from scratch again.
we will just gonna consult again with an elder law lawyer.
thank u sm for the resources. :)
I am happy your mom saw an elder law attorney and they agree, that's who would know.
Always the best solution to see a professional in your area when you are dealing with life changing, potential catastrophic choices. Which this situation most certainly is.
It must be an elder lawyer because they are well versed in Medicaid law.
Please do not try and figure this out from an anonymous forum, it could cost your folks everything.
Do a Google search and get with an insurance broker like today.
just asked my mom about this.
what she was told exactly by the nursing home admin is to drop or disenroll from the insurance and just have straight medicare in order for them to take him in for long term care. (although nothing came out of this because after we dropped it, the nursing home evaluated him again and they said my stepdad requires a sitter and wanders so he needs a locked unit which they don't have and we had no idea about any of that)
my mom and sister consulted a lawyer and they told the lawyer about what the nursing home admin wanted us to do, and the lawyer agreed with it. the lawyer even said that's what she also wanted to discuss with them, to drop the other insurance.
so im not sure exactly what's going on. but i will certainly look into an insurance broker as well.
thank you.
I read that he was admitted due to extreme Sundowning. Was he extremely agitated and violent? Does he have a prior diagnosis of dementia/memory impairment?
2) Medicaid (in most states) only covers LTC. As it stands, your Dad seems to need MC because he doesn't have a profound, progressive and debilitating physical health condition. His symptoms are cognitive only. LTC is assessed as needed by a doctor.
3) Has your Mom provided the hospital with her PoA paperwork? If not, she needs to do this now. Is she also his Medical Representative (a HIPAA form signed by your Dad naming your Mom as MR)? It may be a goood idea to have your Dad assign you as his MR. Ask for the form at the hospital. You will it out and all he has to do is sign it. This allows his medical team to legally discuss his private medical info with the MR without your Dad being present and consenting.
What state do they live in?
Have you requested a Filipino interpreter for him/your Mom (because medical lingo is not easy to translate)?
I agree with opening an online portal (as him) to access his medical info. You shouldn't have to request records... if it's anything like my portal, you will easily be able to see all his appointments, doctor's notes, bills, payments, prescriptions, etc.
I'm wondering how Medicare is covering this long of a hospital stay for "only" dementia? You don't want your parents to be surprised by a huge hospital bill... is your Mom staying on top of this?
I'm sorry for this dilemma. Provide as much info and updates as possible so that we can give you the most informed guidance. May you and your Mom receive clarity, wisdom and peace in your heart on this journey.
yes, my stepdad is diagnosed with dementia by his primary care physician. and him and my mom were advised to see several providers first to do certain tests and once they've done all of those, see a neurologist.
they were still in the process of completing all the other tests when this recent incident happened. (it didn't help that my stepdad was very uncooperative. my mom always have to catch him at the right time)
actually the neurology doctor called my mom while he's already in the hospital and she told him that he's in the hospital. the doctor said to just call him once we're ready to make an appointment.
looking back now, i guess those other tests are for the UTI, and other diseases i assume.
and yeah, my mom is his poa.
i've been going with her everytime she needs to discuss my dad's condition with someone just so that we don't miss any details.
As the "community spouse" she may be entitled to keep some of dad's income. No NH is going to help her with that.
Find mom a lawyer who knows the Medicaid process is your state. Here is a good place to start:
https://nelf.org/search/custom.asp?id=5427
will accompany my mom tomorrow, monday, to the hospital to request to have my stepdad tested for uti and ask for a geriatric behavioral psychiatrist to evaluate him too.
i just wonder tho, just wanna be proactive. as early as now, should we already apply him for medicaid? according to my mom the hospital said they will take care of it. how true is this? the most recent thing they made us do, the hospital and one of the nursing home admins was, to drop his primary insurance which we did do immediately. they wanted him to have medicare as his sole insurance.
i dont want to just take their words for it and not do anything and then down the line find out that we have to apply for medicaid ourselves.
not familiar with the process with medicaid so any sort of enlightenment would be amazing. thank you so much.
Insurance says, if they are well enough to go with you to an appointment, they are well enough for discharge and there will not be a bed for him when he returns.
ALL medical appointments need to happen in the hospital, or completely arranged by the hospital, including transport to and from.
Be on your guard, these social workers, discharge planners will lie through their teeth to manipulate, guilt and any other underhanded behavior to make him your problem and not theirs.
Request they bring in a geriatric psychiatrist to medicate the behaviors. As sad as that is, it is the last recourse for him.
Best of luck, this is a terrible situation for all of you.
thank you so much!