What Just Happened??

greentea47

So we ended up taking my FIL to ER last night because he was complaining that he had chest and abdominal pain, he

As we waited in the ER for his blood tests and scans, he was starting to get restless because he said he was no longer having pain and was trying to leave. His blood tests, CAT scans and vitals turned out to be fine but they wanted to keep him for observation overnight. So as we waited to be admitted into a hospital room, My FIL started to get more agitated and aggressive trying to leave the ER, pulling off his IV, trying to call the police because he said my husband was robbing him of all his money .We tried to talk to him, calm him but he called us thieves and just wouldn’t listen to us. The ER staff tried to talk to him but he wouldn’t listen. So they Baker Acted him.

My husband and I are still so in shock of all what took place in that ER. My FIL was yelling, cursing and calling my husband and I all kind of names. The ER staff tried to give him IV medication but nothing was working, he eventually was crying out, asking why we had him in jail.. it was just awful.

We don’t even really know what happens next… The hospital says it is a 3 day hold but is he going to come home even worse? Are they just going to give us meds to sedate him at home and pray for the best?

I feel like my thoughts are all over the place. I feel guilty for even taking him to the ER.

harshedbuzz

@greentea47

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

I went back and read your previous posts, it sounds as if this is an emergent situation. Has he been evaluated for dementia yet or even done the preliminary bloodwork with his PCP?

What I suspect is that removed from his wife's scaffolding and routine, your FIL is struggling to function and is having delusions that your DH (and others) are trying to steal from him and otherwise harm him. Being in a chaotic setting of the ER, especially in the evening when PWD are prone to sundowning, put his delusions on steroids which is what led to him being Baker-Acted.

This could turn out to your advantage if you can get him turfed to a geriatric psychiatry unit from the hospital for medication management to relieve some of the anxiety he feels that is driving this behavior. They may even be able to start the diagnostic process in the hospital or get you an appointment for an evaluation sooner. I would discuss this with his care team and social worker in the morning.

My mom fought me on getting dad evaluated for almost a decade. He presented very much as you are describing your FIL. Mom finally agreed to get the evaluation; I'd already found my 1st and 2nd choice options at medical school affiliated hospitals in my metro area. While awaiting an appointment, dad had a full on psychotic episode and I had mom buckle him into the backseat and meet me at the state line where I would drive them both to the ER of my first choice. Dad was admitted for a couple days during which time they did a basic workup that gave him a preliminary Alzheimer's Diagnosis and a follow up with the Memory Center months earlier than the appointment I'd made. Dad had mixed dementia; one of his was treatable so that was started in the hospital. From the hospital he was released to a rehab/SNF while we made plans to move them closer to me and deal with their houses. This isn't an easy or ideal way to get diagnosed, but it could work in your situation.

HB

Quilting brings calm

My mom does not do well in ER or hospital settings. She gets agitated and starts shaking the bed rails. Because of long wait times, she will loudly complain repeatedly that she wants to go home instead of being seen. The last time she was in the hospital, she thought we’d moved her between assisted living facilities. She wanted to go to the dining hall and to the laundry room. And she’s only got mild dementia.

I agree with harshedbuzz. Cooperate fully with the psychiatrists at the hospital. In addition, if you have been or are now considering placement, tell them that you cannot safely care for him at home, you refuse to take him home and that he cannot safety care for himself at his own home ( if he has one). This is an opportunity to get him and you help.

M1

agree with the above. I'm sorry it happened in such a chaotic fashion, but this is your opportunity to get him diagnosed and properly medicated, at the very least--and as already said, it may be the perfect opportunity to get him into memory care. A psych hospitalization is necessary many times (it was for us, too) before proper care can be put into place.

ButterflyWings

Emergency rooms are woefully wrong for PWDs, my DH included. I have some nightmare stories from our handful of ER experiences and will move heaven and earth for him never to be sent to one again (especially not all alone, which was our last tragic experience thanks to hostile, avaricious, and criminally abusive steps/in-laws possibly trying to set up an APS scenario to advance a secret guardianship lawsuit).

At least you were with your FIL trying to explain to others, calm him, and be an advocate. Imagine had he endured all that horrific and traumatic experience solo, either due to ignorance or intentional neglect by other close family members. (Who does that?! Brief sidebar rant over).

That said, I agree 100% with all the feedback above. You took him there to get him help albeit for a different complaint. But it sounds like the help he and you all need is access to a geripsych, dementia work up and ideally diagnosis which helps provide some clear next steps. So, its not how you got there, its where you can go from here.

I am struck by your title "What just happened?!" If you who are not cognitively challenged are thinking that, just imagine what your poor FIL's impaired brain and emotions are telling him during and after the same experience! Sorry that this happened but wishing you some positive outcomes now that it did.

H1235

I think get as much figured out as you can while he is in the hospital. I would push for evaluations, tests what ever he needs. Bringing him for some kind of follow up appointment might be a nightmare if he doesn’t want to cooperate. Are you going to be able to care for him in your home? I would make sure you know as much as you can about his needs moving forward. A move home then to memory care is a lot of moving around and may be very confusing. Now may be the best time to consider mc or something like that. It’s a lot to think about. I imagine your head must be spinning. Good luck to you.

Anonymousjpl123

Awful and so, so scary. I’m so sorry! Also horrible to have your DH experiencing this with his dad. That said, this is definitely when to spring into action. Ask questions, make follow-up appointments, and whatever you do don’t feel like he can or should come home if he’s behaving in any way that makes you feel he is unsafe. Make sure you explain his history and what you’ve been concerned about. Don’t rely on their observations of him - he may be out of control one minute, then “showtiming” the next - able to pull it together like nothing is wrong.

I know how scary it is, but sadly it’s usually an incident like this that prompts treatment. Stay calm and PLEASE don’t feel guilty! You absolutely did the right thing.

greentea47

Thank you all for you feedback.

We talk to the hospitalist and they said medically he is cleared for discharge but they are awaiting psych evaluation to determine next steps, potentially psych hospitalization.

It concerned me because the hospitalist mentioned discharging with home health care? I stressed to him that’s we are not able to safely care for him at home as he needs 24 hour supervision. So we are hoping to discuss further with case manager again regarding placement.

I’m praying that we get the appropriate help that we need while he is admitted.

Again, thank you all. The support from this forum has been invaluable to us as we navigate this journey.

eaglemom

That has to have been so scary for all of you. You say he's "medically cleared for discharge" but the chest and abdominal pain - was that addressed? With this change of behavior did they introduce new medications? I would want to know all of those answers - but that's me.

Maybe a psych eval would be totally in order here. If that is what you are wanting, you can ask for that. If you have any fear in taking him home, please speak up about it. Personally I know that would be difficult for me, but your safety, and his has to be considered.

Let us know what happens.

eagle

pookabera

https://alzconnected.org/discussion/comment/201531#Comment_201531

I know that everything is overwhelming right now as it is, but I would strongly recommend starting to research home health care, private duty nursing, hospice (although that may not ever be needed or be needed for a while) now. Things move quickly and you don't want to feel like you're just picking from whatever is in front of you.

My dad was in the hospital for a week and after the first couple days they told us to start looking for subacute rehab facilities or home health care companies because they were discharging him as soon as possible. I spent that week making a spreadsheet of rehab facilities and cross-referencing all over the place. It was a lot (and possibly more than was necessary in the grand scheme of things), but feeling like I had some control over the situation and that I could advocate for him was a small comfort for me.

Emily 123

Stand your ground: “Not safe, and we can’t keep him safe in our home”

greentea47

Yes, while in hospital, they did EKG,CT scans, labs and everything came back normal. He has now been transferred to a psych facility and we are awaiting further evaluation.

We were finally able to speak to social worker at psych facility today and we asked about placement in possibly memory care since we would not be able to safely care for him. The social worker told us that they do not find placement for patient, if family is available, patients are released to family and it is up to them to arrange that if needed.

I was very surprised as we were told at hospital that the psych facility would coordinate that once he was evaluated. The social worker also mentioned my FIL would most likely be released by next week and they cannot hold him if we cannot find placement before then.

I kept explaining to her that we are not able to care from him and it would be an unsafe discharge. She asked if I would like a list of ALF in the area to which i explained that would not be appropriate For him as he needs a secured facility, like memory care. Then, she asked if I would like a list of nursing homes and asked me if I knew if all nursing homes are secured ????

I’m so frustrated and I really don’t even know who to turn to if not the social worker. I thought it was their role to assist and coordinate placement?

I don’t really know where to go from here.. I’ve been researching potential memory care units but we were starting the process of Medicaid which I thought the social worker could.. we had made an appointment with with elder law attorney before all this happened but that’s not for another 2 weeks.

Any guidance?

M1

Do not under any circumstances agree to discharge. I would ask to speak to the treating psychiatrist and to the social workers supervisor. And keep escalating from there if you have to. Yes, it is standard practice for them assist with placement. Sounds like they are giving you the runaround.

Belle

When I've been in a similar situation for a family member I hired a geriatric care manger to 1) keep speaking and advocating to the hospital about a safe discharge plan and 2) to quickly find us facility for placement that was appropriate for our LO. I had no idea what facilities were good or accepting patients without a waiting list. Maybe you can find someone who does this in your area who can do that (they are paid by your family and are not the "place for mom" services that get a commission from the facilities).

Phoenix1966

@M1 is exactly right: do not agree to discharge. Some hospital social workers almost try to bully you into accepting your LO back. In my case, it was a captain of the fire rescue unit that took my grandmother to the hospital who gave me the phrase, “There is no safe discharge plan in place”. He told me to keep repeating it so my grandmother (Stage 5 hoarder) would not be released back to her unsafe home and it bought me time to find a MC facility for her.

I will add the social worker did not help me with placement, but told me to get a local agent for MC placement(much like the advisors associated with A Place For Mom). The person did not request payment from me, but I am sure they received something when I placed my grandmother into one of their recommended facilities. But I was deep in the weeds and needed help, so I went with one of their suggestions. The hospital social worker did as little as possible to help in my situation.

Quilting brings calm

It’s so hard. We all tell you to say there’s no safe way to bring them home. Yet I tried that same phrase when a good friend was being discharged back to her hoarder home with a walker. The staff just shook their heads and said that they couldn’t stop her from going back to the same environment that she was in prior to being admitted for surgery. Of course, she seemed perfectly normal other than the hoarding.

greentea47

Yes, we have been stating that if he is released It would be an unsafe discharge to all staff that we have communicated with at this facility.

But we keep getting the same response, they can’t hold him due to not being able to find placement. Our worst fear is that even if we refuse, they will just kick him out to the street!

We have a meeting tomorrow with psychiatrist to discuss more details but so far they have been less than helpful.

I have reached out to care managers, other attorneys in our area to help with quickly finding memory care, Medicaid planning but so far they’ve been slow to respond and I feel like time is ticking and the facility is going to try to release him whether or not placement is set.

Plus, from what I’ve been researching about Medicaid in Florida, I know it doesn’t cover all expenses for memory care and then the long waiting period to determine if he would qualify so I don’t even know if rushing and trying to apply would help, especially if the facility is trying to discharge in just a few days.

It just seems that everything is stacked against us all right now and this facility seems like they would just release him so we would have no other choice but to bring him home.

M1

Id call your congressman and the local news stations if you have to. Is he a veteran by any chance?

harshedbuzz

This really should be on the social worker in the geripsych unit-- it's part of discharge planning. Is there a patient advocate/ombudsman in the hospital?

If he's going to be a Medicaid-pending admit to a SNF, that's going to probably mean a wait list for a decent quality facility. If he's a veteran, there may be a state supported home appropriate for his care.

HB

JeriLynn66

You can appeal the discharge order with whatever insurance company you have or with Medicare. If that fails then you ask for a second level appeal.

H1235

Maybe flat out ask what will you do if I refuse to take him home. Unfortunately you may be right they may just send him out the door. Our medical system is a mess!!! Is there a county commission of aging, or something like that, that could help?

eaglemom

This is heartbreaking - for you and for your FIL. The "system" as it is, just don't work. This is an exact case in point. I am so sorry your going through this, or that anyone has to go through it. Its wrong and frustrating.

I do want to applaud you in all of your effort for your FIL. Its hard to make these calls, tell the story and then make another call. All to find out you need to call someplace else. He is lucky to have you of his side, thank you for caring for him, and wanting the best for him. To me that's the sad part - all you are trying to do is keep him safe, & its proving to be very difficult.

I wish I had some other idea for you. The only other thing I can think of that might help point you in a direction would be a call your PCP and ask if they know of any facilities. Sometime they might know of some private residences that accept residence.

I wish I could be of more help, or any help.

eagle

greentea47

Unfortunately, he is not a veteran.

I’ve reached out to geriatric care managers, area agency on aging…. Its seems as soon as I give them info about my FIL (inpatient at psych facility, Medicaid, no assets) care managers don’t want to help and the others just refer to someone else who refer to someone else and around we go….

We spoke to covering psychiatrist at facility and expressed our concerns about being released next week without a safe discharge plan. Her response was work hard to find placement as soon as possible and he will continue to be assessed daily by the team to determine if and when he could be released.

This psych facility has a social worker and discharge planner. The discharge planner emailed my husband a sheet with every skilled nursing and assisted living facility in our county and our two neighboring counties, so that has been the extent of their help with placement.

So we have reached to out to 4 memory care communities but the issue is still how to pay for it all. We are hoping to go Medicaid route. We spoke to attorney about helping with application but the paralegal in the office said they would have to refer us to an attorney who handles guardianship since my FIL wouldn’t be able to sign any documents.

Medicaid only covers so much. Do families take out loans to pay for these costs???

It’s so much and at this point I’m praying for a miracle that this somehow will work out in our favor.

Thank you all again for all your feedback

Anonymousjpl123

I don’t know the details re: Medicaid but I do know that the department on aging can help - city or state. Also, you are 💯 correct: unless someone really plans for it in advance, without extra income or a pension there is no reasonable way to pay for MC.

That being said, I am a big fan of hotlines. Sometimes they help if you get the right person on the phone. I know it takes time.

Here is the Florida state elder hotline, they may be able to help: -800-96-ELDER