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

Quick update. Dad went home 6/17 and fell on 6/20. At that point he was immobile again in his chair, couldn't bear weight on anything. He wanted "2 or 3 days" to see if maybe it was just a sprain. on 6/23 I told him it's 3 days, it's time to go get x-rays. I had to bully him a bit because now he wanted "until Monday" but he went. It was very difficult moving him into a wheelchair, into a car, etc on my own but I didn't want his building management knowing he was out of his home again as they'd start the eviction clock. I was sick as a dog so would love to have just said sure, Monday and stayed in bed.

Broken hip. He's back in the hospital, he will be headed back to rehab and there is NFW he is going home again. He wasn't even home 72 hours, I didn't even have time to get all his hospice and other services in place since he went home on a Fri and Mon was a holiday.

When he left rehab, he actually wasn't doing bad with a walker, I didn't think he should ever have gone home but in my head I was giving it 2-3 months before he'd be back at the hospital, I definitely wasn't expecting 3 days.

This is exactly what I went through with my Dad. Just switch out the word “smoking” with “chewing tobacco” and “drinking”! I had my Dad in Independent lIving and he just stopped taking is medicine, doing laundry, and keeping his apartment clean. He was hoarding with stuff other resident would discard into the trash room down the hallway.

He is now in a long-term care facility. They take care of him. He doesn’t have any opportunity to “hoard” like he was doing. So no bugs and stink like his apartment was. But I still feel guilty that he is there even though it is truly a blessing. If I had taken him back to his independent living apartment he would have been in the same of crap situation again within a week.

He is 78. He thinks he can live on his own but he can hardly walk without a walker. He stays in a wheel chair most of the time pushing himself around with his legs.

The guilt can be overwhelming at times but he has to have help. Not the retirement he thought he would have but he brought most of this onto himself through bad life choices.

Sounds like he could benefit from a psych evaluation and to get social worker and his primary care doctor and the doctor at the rehab involved. I can’t imagine the rehab therapists feel he is appropriate to go home. You now have documentation of the condition you found him in and together with a psych eval may be enough to convince a judge he is not competent to make health care decisions and that you should be appointed guardian.

Short of that, the other option would be for him to go home with 24 hour home health aides (private pay). Final option would be to look into a hospice care center…similar to a long-term care facility, but much more peaceful as the purpose is not rehabilitation so he would only get therapy if he requests it. He would get all the care he needs, including access to higher level of pain and anxiety medication to keep him comfortable. We went through hospice at home for my FIL and it was unpleasant as the aides can only stay for a week until he was closer to the end so all the daily care, including dealing with incontinence fell to the family. Not pleasant final memories to have of their husband, father. At a hospice center, you can focus of quality visits while he is kept comfortable and all his other needs are met. If he decides to stop eating, that is his right and they will not force him to do so. All that is required is a doctor to confirm he has a terminal disease with less than 6 months to live. Even if he lives longer, most hospital centers will extend his stay as long as a physician confirms he is still terminal. Do your due diligence and research/visit the hospice centers, but this has been the answer for many in similar situations.

Just figured I'd share a quick update. There have been no further arguments, issues, etc. He's been asking for stuff, I've been bringing it. He has energy, he is alert and is a completely different person. He says he's put on 25# (I'm sure he's put on weight but don't know about 25). His favorite movie is Top Gun (he is a USN Vet) and today I'm taking him to see the new movie. He was given a 4 hour pass and is just bringing his walker, no wheel chair.

So massive positive strides, though I'm sure because of that he is still thinking about going home. But I have not seen him this "human" in probably a decade, even before my mom passed. There is no way he would have left his house over the past few years to go to a movie and now he's looking forward to it. Without the 24/7 care he's been getting, he would immediately fall back into his old habits.

I live 2 blocks from him and over covid 2020, I re-did my back yard, put a fire pit and TV out there and made it wheelchair accessible thinking he'd really enjoy spending time there. 2 years later and I don't think he's ever seen it. I've seen him more in the past few weeks than I probably have in the past 6 months. I avoid going to his place like the plague. I can't take the smoke, darkness, dirtiness and depression. And he won't leave his place. I'd rather drive the 15 minutes to rehab. I hope he recognizes his quality of life has already taken a big move upwards.

I checked his answering machine messages and there was one on there from building management referring to discussing a letter they sent him. I have no idea what that was, I've been bringing him his mail and haven't been looking at it. Worst case would be it's a notice he has to be home by a certain date or give up his place. That could also be best case but since I'm the one who would have to arrange to have his place cleaned out, it's something I need to find out about.

I think the OP has done everything that can possibly be done. Adult protective services has been involved for months. If Dad has been seen and evaluated by a geriatric psychiatrist, who has deemed him competent to make his own decisions, the medical facility will have no other legal choice that to let him go by signing out against medical advice (AMA); they are not prisons and cannot hold a person (even one found crawling naked through his own feces) against their will if the psychiatrist has ruled them competent. He can go home and burn the house down in two hours as long as he left AMA, the medical facility is clear as is his son, the OP. There are numerous cases where this happens everyday in every state.

The OP has a wife and two children and a job. He needs to do what a good parent would want him to at this stage of life. Having done his best to secure his Dad a safe and secure living situation, he needs to enjoy his marriage and his children. Not being God, he can do no more.

I wish him, his family and his Dad peace during this difficult time.

"I'm told by hospice, hospital and rehab nobody can stop him from going home if that's what he wants."

That's not true. Hospital and rehab personnel will tell you anything to get you to take your loved one home and be your responsibility. If your father is not safe at home and doesn't have support, it's considered an "unsafe discharge" and hospitals and rehabilitation places (usually in NHs) are very much responsible. And THAT'S why they want YOU to take responsibility and take him home.

If you've found him "naked, crawling on the floor, covered in butt to heels in thick feces, it looked like a sewage truck exploded in his bathroom", then he is NOT safe to be at home. Period. Get together with the NH/Rehab facility's social worker and start discussing placement there.

If not, you will just be repeating this cycle again and again. Do you want to do that?

Rob, Please just make him comfortable. He has lived, loved, laughed. I have watched four people pass and let me tell you I just let them be comfortable. He will soon forget that he smokes, he will stop hydrating, he will stop walking, stop opening his eyes. Just love him and let him be comfortable. My Mama was a chain smoker until two weeks before she died. She forgot how to smoke, that she loved coffee and she loved Judge Judy. My Daddy forgot how to tell stories, sing songs and eat his favorite food. My sister forgot how much she loved to run marathons and how much she loved her work. My grandmother forgot how to smoke and she loved to be right. So in all four I just made them comfortable. Keep them in your heart and just love them. Prayers for you and yours.

Say that it's an unsafe discharge. He lives alone and you are unable to provide additional support that he needs. Do you have POA?

Say that it's an unsafe discharge. He lives alone and you are unable to provide additional support that he needs. Do you have POA?

Talk to case manager or social services where he is getting rehab. Seems he qualifies for skilled nursing care and should not be allowed to go home.

Ugh--I once found my FIL sitting in his recliner, hip deep in fecal matter. As soon as I opened the front door, the smell hit me. DH was with me, but due to a major shoulder surgery, he was unable to help me lift of clean his father. He sat on the couch and gagged. GREAT SUPPORT!

It took a couple hours to get dad cleaned up. I was fairly new to CG and really didn't have the 'lingo' down. DH took dad out to eat(!) and I stayed behind and cleaned. Luckily there could have been a ton more poop, but it was still a huge job.

I had to throw away the recliner, and we bought him a new one that I covered in layers of chucks. The couch had been peed in, but I just cleaned that and the pile of blankets he slept on as a bed. Dad refused to wear real underwear, only thongs and he'd blow out those in 10 minutes. I was literally peeling them off of him and throwing them away, slowly replacing them with 'real' underwear.

The first time I had to deal with this I was taking some strong steps to get him placed. He refused outside help, except for me and SIL, who had been his primary CG for ages, but needed a break.

After the fact, I realized that his fecal matter was a source of bacteria that was actually dangerous to me. Luckily I glove up to the elbows, but I know his place was not 'clean'.

I made a ton of mistakes. My DH was on my case everyday to do a better job. I was also caring for my dad who had Parkinson's. Seemed many days like I was 'failing'.

Looking back, I should have stepped away and let his other son and daughter and DH take over. I was willing and stupid and this went on for months.

Only when his oncologist told him he could not go home, ever, did dad lose faith. He died 2 days after realizing he would not be able to die at home.

It's awful being the only voice of reason. Esp when it's NOT your relative and you are being treated like a serf. It took me years to overcome the feelings of being used by the family.

I'm MUCH tougher now and more aware of the ins and outs of elder care. IMHO, once you have someone who is having constant fecal accidents, then it's really time to evaluate the living situations. We waited too long with FIL. After his passing we had to throw out most of his furniture and replace all the flooring. He had really trashed the place due to feces being everywhere. And urine. My DH kept telling me how mean and selfish I was, but he never so much as put a load of stained undies in the wash.

Maybe he should have been at a facility that was near me (now closed) they would have set him up with a company of their choosing before discharge

It isn’t true that no one can stop him from going home if he wants. They won’t send him home to unsafe living conditions. You need to make clear what his situation is and has been. Talk to his doctor and social workers.

Not so fast there..........how about you calling Adult Protective Services (APS) because he has no one to take responsibility for him. I believe they can do a 72hour psych eval and take responsibility for placing him in a Psychiatric hospital for his safety. If not, you take him to the ER right after he doses with morphine and leave him there.

Be sure to share a copy of this posting you made with the social worker. If you can get pictures of the crazy behavior(s), that will help the APS. You can also tell his doctor to revoke the no transport document or be held responsible for whatever happens in his home while unsupervised. Get tough and don't take no for an answer.

rawbar: An individual who is "covered in butt to heels in thick feces" should not be sent home.

I'm sure all of this is extremely difficult for you. I don't know if the guidelines/laws vary from state to state but I thought hospitals and rehab facilities were not supposed to release someone to home if they are unable to care for themselves at home. I assume you have been working with the rehab facility social worker or case manager on all of this. I also am quite aware that they do release people like your dad anyway, particularly if the person can clearly state that they want to be released to home. I experienced this with my mother after multiple falls and trips to ER and urgent care. If you can get him to sign for you to have POA that would be a good and might be all you need to place him appropriately. The arrangements you made for placement with Medicaid payment sound perfect and I understand the whole process of applying and receiving Medicaid is quite difficult so you have really accomplished something.
I guess the next step would be to be granted guardianship which is also not easy. I ended up paying for an evaluation by a Neurologist/Psychiatrist to have someone of authority clearly state that my mother was incapacitated and unable to safely live on her own without 24 hour care due to early stage dementia as well as all of the physical and medical issues she had at age 97. What you report of your parent's incapacity and needs doesn't seem to matter much so the professional opinion seems to be important. I used an elder law attorney to help with the process but you can do it yourself. Do a search for Adult Guardianship on your county or city website and you should be able to find all of the forms etc that would need to be submitted. I know how exhausting the caregiving role can be and how emotionally difficult it is to get your parent to move to the safer care facility when it is not what they want. Good luck

My sister who was 75, lived alone and was ready to be released from rehab. She told nurses and social workers that she had friends who would help her. She had an extra bed for them. Her friends are her age and older and not in good health. She figured that since they were retired, they could each move in a few days at a time. The "extra bed" was a blow-up mattress in the living room of her small one-bedroom apartment. The social worker called me to make sure that things were set up with her friends and I was shocked. I do not live in the same state and had spoken to nurses and social workers several times. Told them she did not have care at home, but they did not listen to me, only to her. She went to a nursing facility. She was not happy, but I am not sure what would have happened if she was delivered to her apartment and left there. Stand your ground.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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