Dad wants to go home from rehab instead of to long-term care. Any advice?

It is my opinion that were your Dad alone he would NOT be going home. They are counting on YOU to do what you are doing, to pick up the slack. They would not be sending someone home alone in this condition without you.
That said, Dad wants to die, and what he is doing will ensure he WILL die. He is with it? Then it is time for you to read him the riot act. He has a right to let himself die, but not to put you through this.
If that doesn't work I would consider backing away myself, with a good medic alert device. You are enabling this no matter how good you intentions and no matter how strong his wishes.
I am so sorry. But as I said, as a nurse, with NO FAMILY support, Dad would not be released to go home. Time to start with a firm and honest talk with a social worker AND your father. You may need to threaten to leave him in the hands of APS which has already been involved.

Please follow Alvas advice below. You would be surprised how much abuse the human body can take and still be alive. He might be a walking shell but still alive. The feces thing would have done it for me. I am surprised you were able to get him to go to the hospital.

AlvaDeer is right. If the hospital, the rehab, and everyone else is told plainly that he has no one to help him at home and that you're unavailable, they will not release him home.
Please stay strong and don't let APS or anyone else talk you into accepting responsibility for your father and letting him be released home.
Your father will be better off in the rehab that allows smoking. Try to convince him that it's best and that you cannot take responsibility for him. Good luck.

His life alert. Is it the type that goes off by itself (usually worn on the wrist, they're called Vibros), or did he have to have pressed it?

You should get yourself taken off the responder list, for a start.
Do you have any formal authority to act on his behalf, such as power of attorney or medical proxy?

I'm sure Alva's correct, that the healthcare professionals are thinking you'll cave in. But they are correct, in that if your father is deemed to have mental capacity then he cannot be held in hospital or sent to a facility without his consent. It would be false imprisonment. And if they can just shrug their shoulders about it - although to be fair they have little option - that's what you have to learn to do too.

You couldn't possibly arrange a business trip that takes you clean out of the country for six weeks, could you? This would help to ensure absolute avoidance of doubt when it comes to what family support your father will have. Their doubt and his.

If you can, really convincingly, take yourself out of the equation it may give your father pause.

Your Dad is 24/7 care and as such is an "unsafe discharge". Thats what you tell them. You do not live with him and you cannot be his 24/7 caregiver. At home Hospice means you do most of the work. He has been OKd by Medicaid and a bed is opened, he needs to be transported there. He is not not competent to make that decision. Remind them how you found him. A competent person would not act that way.

Hi! This is just my opinion. I see I’m saying the opposite of others, but that’s all right. You’re bound to get opposing views.

Your father’s mentally competent, unhappy, wants to die.

Let him die where he wants to.

Let him go home.

I would want someone to let me die where I want to, if I’m mentally competent. Let me have a right to choose how I live my last days. Don’t, on top of all my misery, put me in a place I don’t want to be in. Just because I want to die doesn’t mean I want to be even more miserable (for example, by being forced/encouraged to live in a facility I don’t want to be in.)

I fully understand that your father going home will cause consequences for you. And, the whole cycle will start again.

But still I say:
let him go home.

Give him the “happiness” of being where he wants to be, in his remaining life.

Thanks for all the advice. I am his healthcare proxy and have power of attorney but I'm told by elder abuse services that as long as my dad is demonstrating he is mentally competent (poor decisions don't count) that there is nothing those allow me to do.

It never occurred to me I was an enabler though. You're all right that brought this up. I do travel internationally for work at times. In December I was in Dubai when he paged me. I called my wife to go over and help him.

I started writing an email to all his case workers that I will no longer be available as a resource if he returns home and will reprogram his life alert to call 911 (it's not a real life alert, it's a non subscription service where he pushed a button on a pendant). I'm just trying to find out who his rehab case worker is to include her. She doesn't know my dad like his other case workers and is the person feeding into dad's going home desire.

As much as I'd love for him to be able to die at home, the reality is he could be around another 20 years. His dad lived to 95 and his brother to late 80s, both had very poor health for decades (my dad is 75).

Sorry to hear of your extreme situation with your Dad. Perhaps a non-emergent ambulance transport could take him from rehab to LTC. I had this exact thing done for my Mom who was in rehab due to a fall plus Covid and she was wheel-chair bound at that point. At Rehab, her nurses, social workers and PT/OT workers all agreed and help set it up for me. They had to drive her 100 miles to the LTC facility close to where I live, and it was covered my Medicaid.

The long term care is in the same place as rehab. He's only have to move up one floor.

I have to agree on the enabling part. It's inadvertent enabling... but still enabling.

My LO went to rehab post-stroke. When discharge time came, it was clear that I would be her primary helper/coordinator once she got home. What I didn't know was that LO had told caseworkers that her boarder/roommate was actually a companion/caregiver - this was not true. It was strictly a roommate situation - no supervision or caregiving expected. LO also told caseworkers that her friend who lives nearby would be staying with her during the day - this was never the case. LO also told caseworkers that she had railings and other things to help with maneuvering - no one verified this. And finally, she told caseworkers that *I personally* would be assisting her with all needs and there is really no reason not to go home. No one checked this story. Any of it. In fact, the discharge papers even read "discharged to (boarder/roommate)." The rehab gleefully closed the case, discharged the lady to get her out of their hair, and didn't give it another thought. Meanwhile, I had a complete train wreck to deal with. Years later, I am still not over it. I really believe she would not have been discharged except for the "help" that was assumed to actually be available. Had I been more proactive and not so trusting, rehab would have seen the unsafe discharge for what it truly was.

Fast forward to the NEXT time the same person was in rehab. From the moment the person hit the ER (only to be a direct transfer to rehab) I was THERE on the spot telling anyone and everyone that the lady CANNOT be discharged home again because she has NO ONE to care for her. I was pressed on who HAD been caring for her and I told them I had been primary.. but I could no longer and would not be discussing it with anyone. I made it clear that the lady had nowhere to go, no one to watch over her, and I would not be taking her home or facilitating a homegoing in ANY way whatsoever. They tried the "well, we have a waiting list" and they tried stern looks and whatever else. The "team " was literally on one side of the table and I was alone on the other side. I basically refused to take her home. There was no one else who would or could take her and I told them that as well. They did not discharge her THAT time. They kept her and made the lady Medicaid Pending.

Always be aware of what your LO is telling the staff about how much help they have available. Also be aware of how much help the staff is assuming YOU will ultimately give freely just because you gave them some medical history on the person and you come to visit. If they knew that there is no help for the person and help is clearly needed, they are much less likely to keep pushing for discharge.

For clarity, I AM always willing to help another human being. However, this lady needed 24/7 hands on care and her conditions actually got WORSE upon returning home (this is common when the protective environment of the rehab is no longer there). Be very, very, very careful when someone is being discharged home. If anyone has your name, it's probably being assumed that YOU will be doing a lot of the work.

Home-hospital-rehab-repeat.

Some folk do accept changing course to stop at LTC. Some take a few circuits around before accepting. Others never give up but wear out on the way. I think of these folk as Captains going down with their ship.

Would he buy the story that LTC was another stop on the circuit, between rehab & home?

Seen that done.. called 'transitional care' or 'intermediate care' or whatever they think of - basically for those with no rehab goals & not enough support at home.

Can the Discharge Planner person veto his home decision as *unsafe discharge*?

I read your thread, and came up with the same thing I wrote recently to another poster whose mother was threatening to starve herself to death:

1) Go through the posts, and implement all those that protect you from allegations of neglect.
2) Let her starve herself if that’s what she wants. It’s her life, her body. If food and water are there, she can make her own mind up. The sooner she leaves you and your home, the better – any which way.

If you again find him “naked, crawling on the floor, covered in butt to heels in thick feces, it looked like a sewage truck exploded in his bathroom”, take photos before you rush to help and clean him up.
If he insists on doing things that will kill him, that’s his choice. If he finds that it’s not what he wants, use the photos to make sure the ‘experts’ really know what is going to happen, if they get him back on the merry-go-round.

I hadca friend. She had her problems but was competent to make her own decisions. She had heart and kidney problems and in the end had stomach cancer. She went to Rehab and tgey considered her 24/7 care. She had no one to care for her at her apt so they told her she would not be released. That her SS and pension would be turned over to them and Medicaid applied for. My friend was 70. She died in the NH. My DD was an RN in Rehabs/NHs andvhascseen this happen.

If your Dad is considered 24/7 care and there is no way he will have 24/7 help when he gets home, they can't release him. You make sure he is evaluated while in Rehab. You make it known to the SW that you cannot be his caretaker. What happened at his house is not normal. I had something similar with my Mom but she had Dementia. Do not let them tell u there is help out there, there's not enough.

My mom was on the same cycle for years. Hospitalized too-many times to count, once diagnosed with "failure to thrive". For the first few years I was always there and the hospital was happy to discharge her to my care. She lived in her own home 4 houses away from me. Then I started refusing to be at the hospital. Typically they would send her home in a cab. My mom is highly educated and well spoken, so she can usually dazzle the staff and they think she is competent.

I got lucky, the last time she was hospitalized she could not speak for herself and I was able to get her placed in assisted living. She hates it, complains constantly, but I have my life back.

All the advice I really have is define your boundaries, stand your ground, and be prepared to let things that are out of your control unfold. I had to make peace with the fact that mom might die in her own home, but that was her choosing because she was living poorly, refusing outside help, plus constant suicide threats which I grew very weary of after years :( Patience paid off in the end.

I know the younger versions of my parents would be devastated to know the negative impacts they had on my life.

And yet another thought- they ALL say “I want to die at home”.

Was your father placid, comfortable, and content when you found him lying in his poop pile? If so, doesn’t that say something about his cognitive circumstances?

Have any of his experts explicitly stated that he is competent to care for himself? (HIMSELF, which means NO LOVING FAMILY)?

My LO, who looked like a million bucks and could conduct a social conversation like nobody’s business, was diagnosed by a gentle, sympathetic psychiatrist who pegged her deficits during a fairly brief but comprehensive conversation, which revealed significant cognitive problems AND severe anxiety over trying to conceal them.

Has anyone actually done even a screening addressed to his cognitive status? It may be overdue.

Well, seems like things are suddenly getting accelerated. I emailed all his caregiver case managers and rehab social worker and PCP today basically saying I'm out if he goes home and I'm setting his medic alert to 911 and also used the term recommended here of "unsafe discharge".

I received a voicemail this afternoon that his rehab social worker pulled together a meeting for 11am tomorrow. So far the only caregiver I know of that's attending is agespan (elder protective services). I think the reason is his rehab insurance is running out in a couple of days so a decision needs to be made whether he's going long term or home.

I couldn't reach her so again emailed asking her to postpone or at least reply all to my email earlier in the day with a dial in number (agespan told me they are dialing in so there should be one) so all his caregivers knew about the meeting and could try to participate (I have no idea if she even reads emails, she didn't respond to my earlier email)

I guess the come to Jesus meeting is happening tomorrow with half his caregiver orgs not present unfortunately

Long day today, thanks to the group here I went into this meeting prepared. It was so last minute because BCBS was cutting off his rehab payments on Tuesday and the facility needed his approval to change him over to standard Medicare coverage so he could continue to stay. I watched him pull every trick out of how to win friends and influence people. And I called him out on it. He was pissed. He kept telling them how he refused to go home until everyone agrees he will be safe at home. He used the word safe a dozen times, it became his mantra. Everyone nodding and agreeing until I called him out and told everyone he is really good at telling people what they want to hear to achieve his desired result. Said I'm full of s**t and he doesn't lie, when has he ever lied to me. Called him out on all the lies about his smoking. And his near eviction because of it. Lots of other details I won't delve into, but he's there for at least another month and when I went back tonight to bring him some more clothes, etc we hung out for an hour and he did not bring up the earlier meeting at all.

Good morning support team!  @rawbar- My dad was doing the same thing.  In and out of rehabs and would go back to doing the same thing sometimes less that a week later., His house was an absolute mess and his health was terrible due to constant drinking. He fell multiple times and the last one almost killed him. Due to what is called WET brain I had to go thru the painful process of gaining guardianship thru the courts. Since that time he is happy at the ALF and actually enjoys each day as much as he can.

In order to keep your dad in an ALF you may have to go that route as well. It's a painful thing to have to do, but it makes things a bit easier when making decisions. They can't fight you as much and even then we know its what is best for their health and safety. I wish you all the best in this craziness and will add you to my prayer list. These times are hard no matter how we look at them., God bless.

Respectfully,
Nolan Hodges

It’s hard to say this, but let him go.

Hello,

Does your father fit the legal definition of incapacitated? I wouldn’t accept my mother’s discharge from skilled nursing until her elder psychiatrist gave me an official letter of incapacitation. This is a legal acknowledgment that your dad can’t live independently.

Specifically for me, it allowed me to make decisions on her behalf, as I am both POA and successor trustee.

We are dealing with something similar and am trying to take steps for Guardianship. If you can obtain guardianship you would have the authority to make all these decisions, instead of him and he would have to comply. His medical provider will have to state that he is not able to make sound decisions in his own care. The attorney would let the doctor know what needs to be included in the letter. However, that would be the direction I would go. Guardianship allows you to manage ALL aspects of what he needs-- financial, insurance, medical, etc. However, because of how extensive the authority is....you would have to go to court and a judge would appoint you as the Guardian. But all the decision making would go to you regarding his care.

Its a sad situation....but he needs 24 hour care. If the family isn't able to protect, you have to have the covers with him and let him know he has to stay in LTC. You will not bring home for another a accident to happen.
He is being inconsiderate and selfish to the family.
The family the one who will ne stressed out....not him.

My partner lived an active, good 90 years. His health declined in the last couple of years of his life with many visits to the hospital and debilitating problems.
when he was in the hospital the last time, he decided he didnt want to live in that condition and he had already stopped drinking liquids and eating.

I told him I would take him home and the hospital and social workers agreed to set him up with hospice care at home. He continued to not eat or drink, hospice workers came every day, he was seen by a doctor one time who talked to me about what to expect. He was given ativan and morphine as needed to make him comfortable. His family and mine had time to come to say goodbye to him and he died peacefully within a week.

I would like to go the same way.

You're probably not going to like what I have to say. Your dad is depressed. He's lonely. He misses your mom. He wants to die. He has the right or should have, to do what he wants with his body. If he wants to go home, let him. If he wants to die, let him. Don't you think after all he's been through he's earned the right? He's an adult...He's not happy... he's not at peace...( is that why he's smoking 2 packs a day? Trying to get cancer so that he can die? ) Same thing with old pets.... we tend to keep them with us throughout all their suffering when our vetrenarians tell us they are on their way out and its past time to put them down and they need to have peace. Of course no Dr, specialist, hospital, rehab, etc will tell us that because they try bilking us out of every last dime we have. It is job security. It's our own selfishness that keeps others suffering. Let him go. Let him FINALLY be at peace...where he wants to be.
I learned a very hard lesson years ago. I will never make that mistake again. I will live with the guilt for the rest of my life. When it comes my time, it will be on my terms. I will use the death with dignity act, have in place no transport, dnr, no permission to treat me, etc. My kids will never be put in a situation because they feel they need to keep me alive because of their selfish reasons. I'm going out on my terms just as i lived my wonderful life on my terms and they know it. I refuse to let others dictate to me how long I should suffer.
I hope your dad finds his peace that he's long awaited for very soon. I also hope you can learn to let go quickly so that you don't carry the guilt of forcing your dad to suffer like I forced mine to suffer. No one should have the right to let others suffer because WE think they would be better with us than without us. Bless his heart.

You say he can smoke in rehab. He will die a “natural death” wherever he is and whatever that is. To You want him in a comfortable, clean bed while he smokes. Doesn’t seem uncaring to me. Follow the advice, make the institutions do the work. They try to avoid it, but they take the billions we taxpayers pay them for it. Back away for his and your sake.

Hello I am sorry to hear about your father and the obstacles you are facing with him. Many years ago I had the same situation with my father when he was in rehab for athropy of the leg. In there he did a hunger strike until I was called to bring him to his home. I pretty much took care of him and a newborn grandson until he passed away two years later. When I grew up we had a difficult relationship in my culture we are taught to take care of our aging parents. It was tiring but I felt I had to help. In the end I had no regrets to help him. By God’s grace and strength I was able to help him.

Dear Rob, 
  Based upon the information you gave about yourself and your dad, it's difficult to assess both of your situations and make recommendations without more information. It appears you have at least four options depending on both of your circumstances. I will get to those later. I applaud you for finding the rehab./long-term care facility that allows smoking and will accept Medicaid as the payment source.
  For your dad, it would be helpful to know: 1) the state in which he lives; 2) Does he also have dementia or any other medical issues you haven't mentioned, including incontinence, diabetes, neuropathies, all of which would require more care and maybe skilled care for administering shots or other medications? If he doesn't have dementia, he should be able to understand instructions from a person giving him rehab. It sounds like he was doing well with rehab. at the facility and should be able to do so at home or at your home. 
  For you, your answers to these questions might help inform your decision: 1) Are you retired or working outside your home? If retired, you might be available to provide some or all of his in-home care. b) How much time are you willing to spend taking care of your dad either at his home or your home, possibly in conjunction with Medicaid-funded caregivers?
  My assessment of your dad is:
1. His desire to live at home is shared with everyone, but I agree he cannot live alone.
2. His accomplishment, of which he seems to be rightly proud, that he was able to walk 150 steps with a walker at the rehab. facility, shows that he, at that point, had some muscle tone left that could be improved with more rehab.
3. He is naturally depressed having lost his wife.
4. Heavy doses of morphine (I assume for spinal pain) are apparently necessary but could cause drowsiness and mental cloudiness which might contribute to his refusal to stay in a long-term care facility.
5. Doing rehab. by himself hasn't worked for many reasons, including lack of motivation to get better, his weakened physical condition, and his need to be helped doing the rehab., whether at the facility or by a caregiver at home or in your home.
6. Since he stays in his recliner all the time, I can't imagine how he can prepare his own food. With depression, also comes little appetite to eat. "Meals on Wheels", if available in his city, could bring lunch and dinner meals to his home if arrangements could be made for them to come inside to give them to him.
7. The fact that Hospice aides aren't enough is because he needs continuous care/monitoring that is also productive, for example, providing some rehab.
  Finally, the options I see for you and your dad, in order of my preference, are:
1. Move in with him and take care of him, while still utilizing the Hospice aides.
2. Move you dad to your home to do the same.
3. Get "Meals on Wheels" to deliver his lunches and dinners unless he moves to the LTC facility.
4. Investigate whether the state in which he lives allows Medicaid payment for in-home care. If so, will it pay for the 24/7 care that your dad may need, and if it won't, exactly how many hours per day will it cover? 
  The following link will give you a lot of information about Medicaid-funded in-home care which you could check out for your state. A state by state list is provided in the article. Here is title and link. You will have to copy and paste the link or Google the title.
Medicaid & Home Care: State by State Benefits & Eligibility Link: https://www.payingforseniorcare.com/medicaid-waivers/home-care
5. Convince him to move to the Rehab./Long-term Care facility where he can smoke and have his bills paid for by Medicaid. I understand why he doesn't want to give up what you indicate is his only pleasure.
  My opinion is that even the best long-term care facility won't provide adequate care for your dad. 
  Whatever you decide to do, I wish you and your dad the best possible outcome.

I’m so sorry for your troubles, Rob. It sounds to me like everyone else caring for your father seems to think he’s competent to make decisions, possibly because he’s on the young side for someone so unhealthy. However, as you put it, “he was naked, crawling on the floor, covered in butt to heels in thick feces, it looked like a sewage truck exploded in his bathroom and I had to hire ServPro to clean out his place.” This is not a “poor decision,” it is, to me a sign of incompetence.

First, write down everything you can remember about your interactions with your father whenever he has gone home. If he suffers from malnutrition and crawls around covered in fecal matter, those are classic signs of incapacity. If you can’t get rehab to send him to the long-term care facility, then should speak to an attorney who deals with incapacity issues and show him or her your list. Please emphasize that your dad sounds competent sometimes, but that happens only when he eats properly and is taken care of. Point out that he cannot be trusted with his caregivers — he is liable to fire them, and if they’re not with him 24 hours a day, goodness knows what he will do.

Depending on your state, there may be choices for how to handle this. For example, Adult Protective Services may agree with you and take over the case. However, even if you need to hire an attorney and go to court to have your dad declared incompetent, it will be worth it if someone who IS competent (you or someone else) can get him somewhere where he will be safe.

Finally, if, God forbid, he is discharged to his home, and the cycle repeats, please video and photograph everything you see when you are inevitably called to his house again because he is doing something irrational. It’s harder to argue with evidence.

Good luck to your family. My heart goes out to you.

Don’t let him come home, I’m sure that is what most members have replied. Search some of my earliest posts and you’ll see why that is my recommendation.

Good luck. One day he’ll join your mom wherever you choose to believe they’ll go and you can begin to recover.

Crawling around covered in feces would be IT for me. If that was a one,,-time accident, that's one thing, but it that is representative behavior, placement is non-negotiable.