Is there an ultimate authority, when approaching the end of sub-acute rehab placement, over whether Dad goes home or to long term care?

50sChild - I'm concerned about the $3500 retainer fee that you mention your lawyer is wanting. Maybe it's a difference in circumstances, but we paid no such fee. Once we determined we could not bring Mom home from her rehab setting, she was fortunate enough that her rehab facility had a regular nursing home bed availalble so she was moved into that room from the rehab room. Then, we began the arduous and emotionally-destructive process of liquidating her assets (i.e. sell house, sell car, cash in life insurance policies, etc). While she still had some cash left, we also had to prepay her funeral (including casket, vault, etc). All other proceeds from the sale of house, car, the insurance policies went to cover her monthly nursing home expenses. Knowing the funds would indeed run out, I was in contact with the nursing home frequently to let them know how much she had left and when I anticipated it would run dry. When the money ran out (she was allowed to keep several hundred dollars - not much) & she was destitute, the nursing home started the Medicaid process for me and saw it through. We did not pay a fee for this.

Correction -- in 4th from last graf I errored: "Well, there's only one AL/MC with a space and they won't guarantee inflation rates and who knows, Dad may never be rushed to a hospital again.

That should read: "Well, there's only one AL/MC CONTINUING CARE with Medicaid units..."

Thank you all for continuing to respond, I am reading these responses as I run. Some of you have gone to the heart of the matter which is gaslight imprinting so that even though I ran to see my psychologist yesterday, she gets my cognitive is great, it's my nausea and autonomous responses -- not so much so, never could even improve with meds to get over catastrophic persona. Worked hard, very hard, at great personal sacrifice to get beyond Stockholm. I heed and embrace your theme of "heal thyself." Bless you all and Amen and keep reminding me ....

I am going to update you but may be unable to be on computer next few days. I had insisted on rehab care conference, which was set for 1 p.m. yesterday. 1:15 p.m., no call. I phoned social worker (SW), left voicemail. I phoned PCP care coordinator and she said call switchboard and refuse to hang up until you get SW. SW convened care conference with only PT present, no doctor. She was unable to provide assessments (I had asked her last week to keep me copied or informed on assessments). So much so that I shook the universe in asking about MROC, which I doubt was given, because our witness-plant said it was a three-minute "interview." So I asked for congnitive assesment (not that I don't know Dad is pretty much gone except for his emotions and habitual attachments). SW said they didn't have report and would have to contact psychologist (rehab's own doctor apparently hadn't yet documented his assessment either). I burned rubber to track down psychologist. Her office stonewalled me. Finally, I got her cell phone and she was in transit. I told her that as a POA I needed written or firm confirmation as to Dad's cognitive recommendation (ALMC's rates depend on this). She bluffed and blurred and finally said frantically, "I can't believe you are asking this you know your father is in bad shape." She wondered how I got her number. I wondered how rehab didn't know how to reach her. So on. Shame on me, eh? Anyway, I rested easier to learn that it will be documented.

Dad's caregiving agency (yes, they are indeed angels and some kind of vicars on earth) are emotionally pressuring me to bring Dad home. I know better.

I am frantically packing Dad's files and trying to anticipate what to bring before my 150 mile one way trek. To my horror, in my brain overload, I realized that by paying Dad's caregiver to be my rep at the rehab, I effectively zero'd out the last of his life savings. Luckily I got Dad a home equity line of credit (HELC) a few years ago, which may see me through. Thus far only $10K on it for huge plumbing and roofing jobs, required by homeowners insurance. Dad's old house, among the least modern in an affluent area, might bring in maybe $150K as is. There's no way any improvements are going to be done.

This a.m. am seriously thinking about resigning my POA sometime after Dad is placed. I get that he may have to move again unless house proceeds can become available. But elder care lawyer is being cagey about that and wants $3500 retainer for medicaid application. I know Dad will wind up on Medicaid, so what's the problem? Well, there's only one AL/MC with a space and they won't guarantee inflation rates and who knows, Dad may never be rushed to a hospital again. In 2011 lawyer created to two deeds for the house "if your father ever had to leave it." He will not broach the immediate "sell house" question without Medicaid application retainer. The $3500 onto the HELC? New lawyer?

I cant remember if I shared this, but one fairly good ALMC offered $4500/month fixed for Dad's life. That is exactly $24.16 per month less than his SS, work pension, and VA Aid and Attendance combined. So if I write the check for placement May 29 and pay his caregiving bill to date, it wipes out Dad's "reserve" of about $7K. Hello HELC. I refuse to kick in. Area Agency on Aging 1B -- surly, no help whatsoever.

VA -- surly, no help whatsoever.

That's this a.m. May 26. And it's going to be near 100 on May 29. Niiiiice.

50's, I just read your profile.

Ahem.

That's really a lifetime of dysfunction, isn't it? Schizophrenic mother, abusive brother, abandoned sister, etc, etc, etc.

And your husband is a heart/stroke and major back issues patient. And is 86, and in need of care. And you have blood cancer.

Why don't you see taking care of your husband as your primary caregiving duty?

Did your father protect you from your mom's craziness or your brother's abuse?

Why don't you think that you are worthy of SELF-care at this point in your life?

I don't need answers. But these are the questions you should be asking yourself, IMO.

The realtor is a person from a service like " A Place for Mom". They are paid a finders fee for bringing in residents who can pay.

How much will Dads VA cover? What are his other resources?

And no, Dad CAN'T go home because you have a terminal illness and are under your own doctor's orders to give up caregiving.

Let go of the Fear, Obligation and Guilt.

You don’t need an elder attorney to approve if your dad can go to AL. His MoCA score shows he’s incapable of making decisions perhaps and that would include medication support. He’s not going to improve my dear one.
My dad was in AL placement after our care conference with rehab, due to his falls and medication assistance. He could still bathe, dress and eat on his own. It’s easier to go to Al Earlier than later.
Is it possible for you and your husband to visit 3 ALFs and leave the realtor out of it?

My head spins today, after speaking with Dad's elder law attorney who said he had never heard of a rehab to recommend assisted living without medical necessity. And, he had never heard of a rehab using an unknown private "assisted living realtor" to recommend placements. He was pro bono and my time was up. But now today after countless calls and reach outs, I have requested a Care Conference tomorrow at 1 p.m. The rehab social worker said "Dad CAN go home." The attorney told me to ask her if Dad could do his ADLs. The social worker could not answer, and said that I couldn't access any of the assessments done there. So I've just requested Dad's primary care doctor to be involved. I loved the feeling of freedom I had yesterday. But the high pressure and limited placement choices I was getting from the "Assisted Living Realtor" really are freaking me out. When I asked to to find places that could segway into a Medicaid application and bed, she fell a little off her spiel. Yea, I want freedom. But I feel I've fallen into the hands of used car salesmen without "medical advice."

50's child, please keep posting here! It sounds as though you are taking all the right steps.

I'm curious when you say " Dad would never have done that to me"?
Done what? Did dad never send you to school, to be educated by professional teachers? Never took you to doctors, occulists, dentists, etc., to have your medical needs met?

There comes a time ( and dad is there, since he's been deemed incompetent) that an elder's needs warrant PROFESSIONAL care and oversight. Older-aged daughters with good hearts and limited strength and even more limited knowledge of medicine, rehab and drugs are no match for three shifts of rested, knowledgeable and supervised caregivers.

I just reread all your posts. You have lymphoma? And you feel more obligated to extend the life of your dad who refused surgery that could have improved his physical functioning 28 years ago? 

C'mon.  You need to start taking some responsibility for YOUR health and wellbeing here. Not to mention your husband. I think getting dad into care and leaving for warmer climes is exactly the right thing to do.

50s, I think you might have contracted a wee bit of Stockholm Syndrome during these past twelve years. Some sobbing as you recover from that is only to be expected :) - big hugs to you.

Dad would never have done what to you, by the way? Made sure you had the right care for your needs? Looked carefully at all the options, and then placed you in an environment where your physical and mental and social wellbeing could be supported by teams of trained people? Why, did he not like you very much or something?

Be sad that your lovely Dad has declined and needs this level of care. But do not beat yourself up because you couldn't prevent him from becoming very old and very ill.

yes, 50sChild, please keep us posted on his progress. And thank you for this update!

Countrymouse, Thank You! You are spot on on everything.

A few hours ago I learned from the rehab social worker (SW) that Dad was deemed mentally incompetent by two professionals (attending physician and psychologist who administered a MOCA test (I'm not sure I would not have passed it 100%) and other more basic questions. So Dad's DPOA now grants my sister and me authority to make decisions on his behalf, against his will if need be. Rehab is recommending assisted living (AL) with a memory care unit attached, assuming that will be needed in the near future. Dad does not medically require skilled nursing/long term care, so no Medicaid application on the horizon.

Rehab SW recommended I contact VA fiduciary office, as a short form VA 21-0779 ?may? increase Dad's Aid and Attendance to offset somewhat going rates at local ALs. Strangely, this all seems to be falling into place.

Rehab has put me in touch with a placement specialist who now has Dad's profile/needs, and is apparently functioning as a quasi-realtor to locate good matches. This company has over 20 years of experience and excellent reviews. Living 150 miles away, what else could I do? She will accompany me this next week on all tours and she apparently helps negotiate down from published prices. Yea, she gets a commission from the facility, but I intend to use her mercilessly.

I'm stunned about the way I feel. Since 2006, I've put Dad's needs first. I have been convinced by all SWs everywhere that catering to my inner sentimentality and respect of Dad in his failing last years, is not the best course. After I talked with rehab SW, I sobbed to myself that "Dad would never have done that to me." My dear, cut-through-to-the-chase ex-psychologist husband simply asked, "...and you are 97-years-old?" End of story.

I really needed your perspective, as somehow names I know on Aging Care are surrogate sane family members. THANK YOU! If you want, I'll keep posting as to progress. If not, I'm sure I'll start posting in an Assisted Living thread.

Okay.

The rehab SW will make recommendations. These recommendations have to be justified. If the SW makes recommendations which go beyond your father's medical needs, and are therefore for a level of care which is uninsured, what will be the justification for them? Once you know that, you'll be better able to assess what is needed to comply with the recommendations and whether it is possible to do that at your father's home.

DPOA and Medical POA do make you a "person who has assumed responsibility." That is exactly what you have done - you have agreed to act on your father's behalf when he cannot in all financial and medical matters.

But that doesn't make you responsible for providing hands-on care for him. And neither does it allow you to act in direct contradiction of his expressed wishes, unless he is not of sound mind and there is an obvious necessity to protect him.

The caregiver. All professional caregivers, as part of their role, know that their work will come to an end. They will be more or less sorry to say goodbye to their charges, and they move on to the next one. It is lovely that you are so appreciative of this lady, and she may yet be an important person in your father's life, but you really *cannot* allow her employment per se to be a factor. You wouldn't keep her on if your father had passed away, would you? And you won't be preventing her from keeping in touch with him if she wishes to.

Hmm. Have you discussed this decision with her? You could tell her that you are waiting for the rehab's social worker's recommendations, but meanwhile you would value her take on how your father is coping at home and whether it might be time for a more structured care setting. In addition to her in-depth knowledge of him, she may well have valuable experience from previous clients to draw on.

Also am unclear about Michigan Compiled Laws Social Welfare Act 280 of 1939 400.11.

"Neglect means harm to an adult's health or welfare caused by the inability of the adult to respond to a harmful situation or BY THE CONDUCT OF A PERSON WHO ASSUMES RESPONSIBILITY FOR A SIGNIFICANT ASPECT OF THE ADULT'S HEALTH OR WELFARE ... Neglect includes the failure to provide adequate food, clothing, shelter, or medical care."

I am NOT Dad's legal guardian, only a DPOA and Medical POA. But I definitely have a long history of assuming responsibility for a significant aspect of Dad's health or welfare.

I have no idea how this is played out in a situation like ours, if for example the Fire Department alerts APS to Dad's ongoing falls for which a 911 "lift assist" is requested.

I’m just now able to thank you all for jumping in with your generous responses. I am so anxious about the “decisions”passed to me for which there are no rational choices.
The rehab facility social worker (SW) is probably going to recommend “24/7 care” but thus far it’s not “medically necessary” (meaning no Medicaid application, so Dad is unable to afford 24/7 care). Huh?

I have not yet heard about any rehab mental assessment -- that better be pending and I phoned the SW again today with that question, but was only able to leave voicemails.

My heart sinks to say this but I don’t want him living near me. I have broken myself and my relationships and career against rocks caring for him for over a decade, and the friction it causes in my life is unworkable for me.

I’m looking into assisted living or group homes, but it seems even they cost more private pay than Dad has and selling Dad’s house to pay for it won’t bring in but perhaps a year’s worth of subsidy. I have lymphoma and I can feel those lymphies swelling from stress.

The VA Caregiver Support program appears to be a referral program only. Basically, VA SW offered a wait list for VA LTC (years of wait), or two hours of showering help twice a week, which is useless given we have that and more covered with VA Aid & Attendance. It’s night care that’s missing.

I told the SW at rehab that I felt like The Executioner – damning Dad to certain catastrophic fall if he goes home or in a private pay AL without fawning caregivers. And if I “choose” to put him in a facility -- then rapid decline is on me because of my apparently ungainly and “selfish” need to carve out a life.

Have any of you dealt with being unable to afford the rehab-recommended 24/7 care, yet the rehab facility deeming 24/7 care “not medically necessary?” Maybe I’m jumping the gun, because he will be in rehab til June 6. But so far, the verdict is that it’s MY decision. A person cannot make a rational decision when the gun is loaded and there is no expert guidance. I am reminded of the little girl’s conundrum in The Quick and the Dead. At least my father isn’t urging me to try to shoot the rope. I debate calling APS, but have innocently done that before and it was six months of stress before they closed his case.

Another emotional aspect I struggle with, and am ashamed of sharing, is having to face Dad’s saint of a caregiver and the agency owner (my Dad was their first patient 10 years ago) and cut them loose. They are like family bedrock to me (my sister just isn’t involved and can’t be). I told my husband that cutting them loose feels more difficult than my apparent willingness to roll a dice and give Dad over to fate. He’s working very hard to go home. Perhaps that’s what I should honor, knowing it will all be repeated probably within a month of home PT ending.

Grateful for all you share and your empathic responses. I hope this is useful to others.

50sChild, The short answer to your "ultimate authority" question is that if neither you nor your co-POA sister want or are able to continue with POA responsibilities for your dad and there is no other willing, capable and trustworthy family member to do that, then you can have the court appoint a guardian for him. But if you don't want to do that, then I agree with prior suggestions that you move with your husband to a warmer climate that you both want and find Dad a LTC facility nearby. Although you said you don't want to be your dad's grim reaper, I'm guessing that you would be uncomfortable living far away from him where you could not see him frequently and easily monitor his care, whether he has a guardian or not. If you and your husband haven't yet decided in which specific "warmer climate" you want to live, perhaps you could start that search by using LTC facility availability and worthiness as a selection criterion.

There will of course be a lot of logistical hurdles, not the least of which is finding the right LTC facility in the new locale, but given your dad's veteran status, the VA and the state veterans service office may be able to help with some of the logistics and perhaps some of the costs, as well. Both the VA and my state's veterans office have been very helpful to me in providing my 96-year-old dad's care after I moved him from his state to mine and later from my home to a nearby memory care unit within a "full continuum of care" community. This community offers a full range of senior living -- from completely independent apartments, to assisted living, to memory care, and in skilled nursing. If this is of interest to you and your husband, you could do an internet search of "full senior living continuum of care in ____________(city/state) to see what's available. Of course, you'll want to follow-up those results by using Medicare's facility ratings, the state's H&W facility inspection/complaint reports, and any local word-of-mouth recommendations you can get, e.g. realtors and anyone else you can find.

Best wishes to you and your husband in making these difficult decisions.

Rocketjcat has a good thought. Would it be possible to move your dad near where you will be? I know health insurance and other things could be a challenge but might be worth it.

This is tough. I don't know all the legal issues, but I can share my experience. Mom got discharged from rehab partly due to her insurance cutting her off and partly because she complied "just enough" with the therapists to sweet-talk them into thinking she could manage at home with minimal help. Once she got out of the controlled environment which rehab gave her, she quickly started falling. Like I'm talking 6 falls in 3.5 months. A lot of falls. And, she quickly started being noncompliant with the therapists which would come to the house. I think once she was back home, she figured that no one could legally change that. She was very passive-aggressively defiant and would sit in a chair all day making demands and complaining. She had both urine and stool accidents frequently - and that's with a bathroom 6 feet away from the chair she chose to sit in all day. She was really going downhill, but she believed that no one could put her in a home if she did not want to go. As others here have posted, we all knew there would be another fall eventually. We hated to just wait for it, but she was not going to leave her house willingly - she and her sister just demanded that I personally see to it that she had more effective care. Somehow, it was my fault that she kept falling and refused to do her prescribed exercises to regain her strength? One day, the fall we knew was coming actually happened & we believe she lost consciousness that time. She went from hospital to rehab. At that point, I don't know if there's an authority on this (as in what you're asking for), but I simply refused to bring her home. I made it known to the rehab facility that we would be needing a nursing home bed since caring for her at home obviously did not work out & is not safe. Legally, I don't know if Mom would have been able to "fight" that, but she didn't try and neither did her know-it-all sister. We have POA - not her sister. Take care of yourself and your husband. Your father needs more than you can do for him. You tried. And it sounds like you succeeded for a lot longer than I did.

oh, 50schild, your situation is heartbreaking. Yes, your primary responsibility is to your spouse. I echo the suggestion of trying to move your dad to a community near where you and your husband end up. I fear that nicer climates also have longer waiting lists, however. I'm retiring early from my job and moving to where my mom lives to care for her. Her long term care money runs out soon and, like you, I haven't found a Medicaid-funded place that I consider acceptable. She won't move to where I live because the social services for my little brother, who is severely disabled, aren't good enough for his care. So we'll all end up where they currently live. Not an ideal retirement, but it's the best thing to do. This is one way in which it is good that I'm divorced -- I don't have to take my ex into account.

Countrymouse, your post shows good insight. My dad passed away relatively young at 85 from heart disease and stayed at home with my mom until he died. Mom (93) has been staying with me for almost a year now (no dementia, NPD) and we get along most of the time. BUT she still has her home 3 hours away and the two of us have decided for her to go back to her home "for awhile" with her 2 dogs, and get some help private-pay for a couple of days a week (housekeeping-type) and see how that goes. BUT when the time comes for her to come back here or need ALF, or way further down the road NH, then I will make sure she is over here with or near me. BUT this is all without any dementia going on; if that were the case where she really didn't know me, I guess it wouldn't matter where she was, except that I'd still want her nearby to check on her at the very least. But I am already in a warm climate AND unfortunately single (no living siblings), so have no husband to consider. But if I did, I would still want my mom near-by.

Has any person posting on this thread actually done that, placed their loved one in a facility and then left the area/state/country?

It sounds so simple, doesn't it. Pop him into a nice home and then off you go, not a care in the world, with your husband.

I'm just wondering a) if anybody has done that and been glad they did; b) if anybody didn't do that and wishes s/he had; c) if anybody did that and rues the day.

Or are we all just speaking hypothetically?

If your father continues to fall and sent to the hospital, the local department of adult protective services will be called in to assess the situation. My husband kept going for walks but didn't know how to get home. Most of the time it was night time. Once he walked to where he grew up which was 35 miles away.
After many times of doing this with the police being called to help, the police turned to the adult protective services who assessed that he needed to be in the nursing home. He has been in and out several NH in the past for variety reasons. Yes there are good ones and bad ones. The last one didn't have those bells and whistles but it had people who cared. There was a very low turnover and that made the difference. My husband was a wiz at fixing things and would go to where the maintenance man was working to watch him. The maintenance man then made sure to talk to him anytime he passed him either in the hallways or his room.  I didn't know this until my husband passed. That is just one example of the kindness of the people who worked there. The social worker and nursing dept will be able to help you make the decision and recommend a place. By law, the nursing homes has to call you if anything happens while in there care. His medication can be tweaked as they are more familiar with him and using their expertise recognizing what is not right. 
I wanted to assure you that there are good places out there. One of the reasons I kept him home was because of several bad ones and how Medicaid was administered to grant approval or not allow it. In Ohio each county administered Medicare and Medicaid. 
The local dept of aging is another resource to help you this process. Good Luck in your decision. I had to put my husband as first priority for my own sanity and honoring our our connection and vowes to one another.  
P.S. My husbands NH also was a rehab facility and perhaps the one your father is in has a section that is for LTC. 

Wishing you the best 5Oschild. You’re an angel!

I was just praying about what to do about my 89 yr old mother. These answers have confirmed what I knew already but couldn’t decide. Thank you all.

Take him to any place that will accept him. Go for the care plan meeting & go w husband to warmer climate. You’ve done more than enough.

Please listen to all the support you are getting with the thoughtful answers you are receiving. As the primary caregiver, you need to understand you have given your dad the best care over many years. It's now time to relieve the stress from your life and move him to a facility. It doesn't mean you don't love him or have given up, but his care is beyond your scope now and you have to let go of the responsibility. Sounds easy, but I had a nurse friend who helped me accept what I knew in my heart. It is difficult, but in your heart, you know it's time for you to be helped. Tell the rehab you are going to need long term care for him. I did it, too, for my mother after a devastating fall with a brain injury. It was hard for me but best for me, my mother and my husband. God Bless.

Moving your dad to LTC will give you back the chance to be his daughter rather than caregiver. And to put your husband first. It's a hard decision but once made, it will be easier. I don't know the answer about authority, but someone your father's age and his history of falling should not go home. Dealing with some of the same things here, too. Finding LTC on short notice, one that you really like and can afford, is hard. I'm sorry you are having to make these hard choices.

I have to concur with SueC. Your dad will fall again...not if but when. My dad was in rehab too and decision made was to move him to LTC and not back to AL. Coming to my home was not an option. My life is with my husband and our marriage. It takes precedence over my dad. He is 96.5 and in a facility where his needs are met and he is as safe as he can be. And yes he’s fallen 3 times inside of 3 months. I look over his care, attend to things he needs and visit but as someone else said we do not know how long we have on earth. Your dad and mine have lived way beyond the normal life span and they’ve had their time with their wives. I would just be sure he is comfortable and settled. The usual morbidity after a NH move is 2 years. I and my dad are praying for his release much sooner as he is ready to set sail.

Could you find a NH near where hubby wants to move? Would there be 2 houses to sell...yours and your dads? This all could take a lot of time and energy. Can Dad go home, with the excellent care giver during the day and add a night time one, while you sort out the details and plan for a possible move?

Your question was really not answered. No there isn't an authority who can override your decision unless they feel there is abuse. If you can prove that Dad is being well cared for in his home. That all safety measures have been put in place, I see no problem. But I agree your between a rock and a hard place. If you put him in LTC, is there a sibling or family member who could check in on him? I am assuming that "warmer" weather means a move for you.

Just me, but at this point I would go with the husband. 86 is not young and I think your time should be spent with him. Dad's Dementia will only get worse. And if not already, he is in his own little world. Does he know you as his daughter? I do feel for you.

Not to be negative but your dad will probably fall again (through no fault of your own). Elders, especially the demented, don't or can't listen to reason about not getting up. I had the same problem with my 95 year old Mom.

I've had patients fall with me hanging on to them. You can't prevent it. Also, their porous  bones break (osteoporosis) and they fall.

If you bring him home, he will fall again. Either way, he will wind up in a nursing facility at one time or another, I'm sorry to say.

Biblically and by wedding vows, you have promised yourself to your husband.
God only knows how much time we all have. 

Please find a facility that you and Dad can live with, help your dad settle in, then go to where your husband is enjoying the sunshine.

IMO, it's time to place Dad and rejoin your husband while you still can.