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!
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.
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 read your other posts -- your mother is only 58 (you are 32), and your stepdad is 30 years older than your mother. !! Your mom has a LOT of years left. She canNOT risk her physical, mental, and emotional health by bringing your stepdad home.
Does she go to visit your stepdad by herself? What is her first language? I wouldn't past the hospital to find someone who speaks her first language to talk to her and try to convince her to take him home. Make sure she knows that the hospital will promise all sorts of things that will NOT happen (they will "help" her find in-home help, they can't find anywhere now but will continue working on that if she takes him home, etc.).
Your mother needs to continue working -- she canNOT give up her life to take care of this man when she needs to plan for her own financial security.
Did she ever get POA? HCPOA?
Please keep us updated.
she can speak and understand english just fine but every now and then she may not easily find the right words to say. she speaks slowly and softly so there's definitely that tendency for other people to talk over her or interrupt. her first language is filipino.
yes shes already my stepdad's POA. and yes, she does wanna go back to work, she's the most diligent and hardworking person i know and its so unlike her to miss work but because of what happened, she had to take extended time off because just so she could focus getting my stepdad taken into a facility. so that's when she finally got POA, she consulted with an elderly lawyer in person, etc.
My LO was a fierce escape risk, but once a compassionate psychiatrist saw her and she was placed on a minimal dose of carefully chosen medication, she became much more like her old self, and began to enjoy her life and visits from us again.
Try a search for “geriatric behavioral psychiatry ”. If you can have him seen, and get a behavioral plan, you’ll have a professional statement about what may be an appropriate placement.
And do NOT allow him to be sent “home”. Be sure someone is with your mother whenever she is seeing hospital personnel. HER safety and welfare are important too!
if my stepdad gets an appointment with a geriatric behavioral psychiatrist, will he need to leave the hospital for that or will they send a doctor over to his room?
the hospital where he is pretty big so i hope theres a doctor in the building that can just come to him. if he has to leave, they should still be given his room back right?
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
It must be an elder lawyer because they are well versed in Medicaid law.
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!
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.
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.
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.
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