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

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.

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.

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.

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

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.

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.

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

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.