What are the next steps or options for my MIL who lives 4 hours away and rapidly declining health? No idea where to start.

mhwv05, I'm so sorry you and your husband have slammed up against the care crisis dumpster fire. Your poor MIL is overwhelmed in a different way and maybe that's why she seems checked out on her own care. It may return after the crisis.

Yes, I would definitely move her close to you, permanently. There are medical transport companies that do this. They will give you an estimate on price and your MIL should pay for this expense.

I don't know if Medicare will allow you to move her, but I don't know why they wouldn't.

No, do not move her into your home unless you and/or your husband want to be full-time caregivers. How old is your MIL? She sounds like she has too many medical problems to be "easily" cared for. With her going into rehab for 21 days you have a golden timeframe during which to get stuff done and also to move her without a minimum of resistance and appearing as the "bad guys".

You will need to find a facility that accepts Medicaid recipients. Most facilities have very few Medicaid beds and the existing NH residents have first dibs on those. Your MIL might be on a waiting list for an unknowable amount of time, so you may have to put her on more than 1 waiting list if you can't get her in at your first choice place. Check out faith-based facilities, which are generally run quite well and see senior care as a mission. My MIL is in a great one. My MIL went onto Medicaid after a few months in the NH. We opted to pay for her health insurance to get her in, then, because there were no Medicaid beds available and didn't want to move her out, the family opted to pay the difference for a private room to keep her there until a shared room opened up. All Medicaid rooms are shared rooms, fyi.

Sounds like your husband has his mom's legal ducks in a row, which is more than many people do at such a crisis. I wish you much success as you work this out and peace in your hearts for all the decisions you need to help make on her behalf.

You can have her moved to a different facility, do this as soon as possible.

You will contact the facility that you want her in, they will help you navigate getting her there. Then you have to go to the facility she is currently in and get them to send the proper paperwork to make this happen. I had a hard time and ended up standing over the person that was tasked with this job. They all want that 20 day full pay.

You may have to pay for medical transport or I would rent an Rv for a couple of days and transport her myself. Or you could rent a big SUV and do it that way. You have options besides medical transport which is expensive, but would qualify as part of her spend down.

Best of luck getting her moved to a facility that will do everything possible to get her as healthy as possible. Things could improve with the right care.

ps: Medicare will pay for more than 20 days. If she has a supplemental insurance, they will pick up some if not all of the added days co-pays. This is all based on care required, progress and prognosis. Based on the current facility, don't lose hope, she may improve, maybe not, but please retain some hope for her.

I'm sorry to learn of this frustrating situation, but YES, you do have options to move her. 

MOVING:   

1.   The hospital erred in moving her to an unknown facility after your husband and caseworker had agreed on a different one.   I moved my father, after a facility I thought was outstanding was just the opposite.

Contact her treating doctor (not the hospital assigned doctor), explain the situation and ask if his/her consent to move is needed.  In my experience, it's not, but that brings him/her into the picture and provides support for your actions.   It's also a contact in the event a medical issues arises after she's discharged from the rehab center you choose.

My father's doctor's PA provided a letter for backup, in case Medicare questioned the move.

2.   When I found a suitable rehab facility, I advised the bad facility of the move and was advised they would handle the transfer. They used their own ambulance, which drove 10 miles over the speed limit and through all the back roads available, as opposed to a direct route.  I'm sure they racked up a huge bill to recover from Medicare.  

If I had to do it again, I would try to arrange ambulance service myself, directly with an ambulance company.

I don't know offhand whether or not Medicare would pay for the ambulance transfer.  For us, this was several years ago, and I'd have to locate the EOBs for that year.    You could ask the doctor's PA or other staff though.

I wouldn't try to move her myself; given the nature of her hospitalization, I'd want medical support to be available for this long drive.   Contact ambulance companies in her existing area and your area and ask if they have nonemergency transport.  I had to use that after cataract surgery, when I couldn't safely drive. 

The van was wheelchair equipped; you might want to confirm that.

3.   Medicare did not challenge the move, so there were no issues on that.

4.   After she's settled, you might want to consider writing a complaint letter to the hospital administrator, advising of the "mistake", and addressing the cost of the transfer.   You could copy Medicare if you wish, just so that might be added to the list of issues to be addressed at any future review of that hospital.

5.  You raised 2 options for care:   your home or a placement.   I would research the issues of both, but not until the first care meeting.   She'll need a chance to adjust and begin improving once she's in a more congenial facility, and that would guide your decisions.

6.   In about a week of so, there will be a care meeting at which reps most likely from the facility's nursing, possibly nutrition, therapy, and other departments will offer assessments, plans, and potential actions after release.   That's when you go into action locating and lining up what's necessary.

7.   This is the hard part - deciding where she will be and locating home care agencies for about a month after discharge.    The rehab facility's social worker will probably provide you with a few brochures on home care agencies.    I collected them over the years at Area Agency on Aging expos, as well as from hospital discharge planners, after going through a few that weren't up to par.  

I made a checklist, then started calling, and in some cases met and interviewed the scouts, who are like marketers.    It was a good way to get insight into how the home care agency operates.  Some bragged so much that they weren't even believable.    Presentation of specific issues, and asking how they would handle them, was more helpful.

Eventually I found a few top notch agencies (excluding the social workers).  

8.    She will be titled to home care nursing, PT/OT, an aide, depending on what the first visiting nurse determines is necessary.   Typically a social worker is available.  I met with one who was very helpful in offering what other options existed, including Medicaid, etc.    I also refused 2 others b/c they were so aggressive and obnoxious.

This is what I did. In NJ u only have 90 days from the date of application to get the info required to Medicaid. Spend down and find LTC. I started the process in April, Mom was placed in a nice LTC facility May 1st. She private paid May and June (this brought her under the 2k allowed). I confirmed in June that all paperwork was received. Her small insurance policies were cashed in and used to prepay her funeral and she was spent down. July 1st Medicaid started.

I see no problem in having her transferred. We were able to do it from Fla to GA. (My tablet is dying)
The only problem is her new stay doesn't start everything over. It might just continue. You need to talk to the new LTC facility. Tell them u have enough for 2 months private pay and then will need to apply to Medicaid. I am a "hands on" person. So I recommend you do the Medicaid application. I would not trust the facility to get things done in a timely manner. As I said, NJ allows 90days to get things together. After that, u have to start all over. I asked for confirmation everytime I emailed paperwork. I had a check list from Medicaid. Once it was complete, I called the caseworker and confirmed everything was done. He then put in for Medicaid to start paying.

A comment on Geaton's suggestion of faith based facilities...  In all of the rehab that my parents and sister had, probably close to or over a dozen places, there were 2 that stood out above the others: 

One was in Ann Arbor, Michigan, where the U of M Hospital is located and which is a nationally known and respected hospital.    I think the facility was probably a reflection of the standards and competition in that area.

The other was a Catholic based facility, with rehab, IL, AL and hospice options.   The staff even brought me "munchies" after I had to transfer from rehab to palliative care status for my father when it became obvious that Dad was on a terminal path of life.  

One of the religious staff came down and spent about 1/2 hour just holding my father's hand.   He took the time to find a 24/7 easy listening tv station to provide soft, soothing background music.   Religious preference was never an issue.

After Dad died, the DON came to his room and helped me pack his things.   She also brought her dog to work regularly; she was a sweetheart and accompanied her master on her rounds, providing her own doggy  kind of therapy.

Medicare does not pay for transporting. 7 yrs ago it would have cost 2k to transfer my MIL from Central Fla to Atlanta GA. But, u can use this to spend down Moms money for Medicaid.

Medicare pays the first 20 days 100%. 21 to 100 50%. Depends on the supplimental what they pay. My Mom paid $150 a day.

This is the time to have Mom transferred from rehab to LTC. So pick a place with both in the same place. With her health problems, I would not bring her into my home.

I checked on medical transport for my dad. It was $200 down and $12 per mile. That’s the emt vehicle with 2 people. Instead, We moved him across three states in a large SUV with all the elder care stuff. But he was somewhat mobile and only partially incontinent. It was tough but we all survived.

Medicare does not always pay for 20 days in rehab. The patient cannot refuse to participate in therapy and they must be able to document progress in achieving therapy goals. In my FIL’s case, his goal was to be able to walk 50 feet with a walker. However due to pain from a fall, he could not get up out of wheelchair. So he was able to walk 50 feet but he needed help to stand up. He had not used a walker before but no effort was made to upgrade his ability at all. They kept him in wheelchair all day and only PT got him up to walk. Otherwise they just wheeled him to and from meals. Not a lot of “rehab” happened. But once he could walk 50 feet, he was discharged. He had been there 7 days. Medicare advantage plan insurance company did not care that he could not stand up alone. So don’t count on having 20 days.

Interesting. My FIL has had this plan for almost 30 years I think. He retired at 65 and now he is almost 95. They have paid for almost everything but we did have this problem with rehab stay. That was a year ago. He is in hospice now but I might look at a different plan at the end of the year if he is still with us.

You can do this. I did it. Don’t delay. Just wanted to make a couple of suggestions for the trip. Your MIL probably has her meds at her home. Take those with you. (But make sure they are currently being given before you give them. They are just to give in case of a problem or delay). Make sure you get copies of her transfer paperwork to take with you. They will have faxed this to the other rehab but just in case you need to stop, you need to have those with the patient. Make sure you have contact names, phone and fax numbers, when last meds were given, when next meds are needed. Don’t count on her meds being onsite. They might not order or have onsite until she checks in. See if you can get copies of discharge from hospital paperwork as well. Since your husband wasn’t called, his name might not be on any of the paperwork as a contact. You will want to fix that.
As you firm up your plans, keep us posted as this community knows what you are dealing with first hand.
Just breath and pace yourself.