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I am at wits end. 84 year old mom lives independently (dad died 5 years ago) and started having health issues in Aug. First a fall, 3 days in hospital, then back home. When home health visited, she could not answer door, house was a filthy wreck to the point EMTs left phone # for Hoarder Rescue on the top of the debris field in her kitchen, she had a UTI and was very weak. Back to hospital. Dr recommended acute rehab which she did for several weeks, then she went out to skilled rehab facility. Ended up with VRE in her urine, then C.diff. She is on day 38 of her 100 that Medicare covers at 80% and the rehab is pushing her discharge even though she IS participating in her PT/OT. She is just not progressing.


I've been down to FL twice in the past 6 weeks. I met with PT/OT, social worker and administrator who all state she cannot be on her own. She needs constant cueing, without which she furniture walks and drags her walker behind her like a sad puppy. When in a wheelchair, they have to push her an inch at a time or she freaks out. She is verbally abusive and belligerent (more on that another time - that has always been her go-to personality) and is sundowning, although no diagnosis of dementia has been made. She has COPD (24hr oxygen which she constantly pulls out if her nose,) and heart disease. They state unequivocally she can no longer drive, cook, manage finances or be on her own. I could tell most of this from the state of the house. Neighbors have told me they have had to help her after falls, or she can't move (all the while she cusses them out) and fire dept/emts apparently have been at her house almost on a weekly basis this past year. Mom fibs and says this is not true.


My question is...I am frantically researching ALFs as I know home care would not work. She would run them off in 2 days. The rehab says because she is not making progress she needs to go...but I have nowhere to get her to, since she cannot return to her home. I am taking FMLA leave, unpaid, to go back to FL in a week and start touring places. Meanwhile mom tells them every day her daughter is coming to take her home....while calling to scream and threaten me that I need to get her out of "that place". Can they just kick her out before her 100 days are up? I have paid the facility her $57/copay that started on day 21 so its not financial. I need more time to get her health figured out. Then comes the fight about where she will live.

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Glad all worked out.
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Just need to say, that 100 days is not a given and Medicare does not pay 80% for rehab. The first 20 days is 100%, 21 to 100 days 50%. If the supplimetal pay the other 50 % the patient is responsible for the balance.

Tell them for now its an unsafe discharge. That there is no one to care for Mom in her home. And from miles away you cannot set anything up. Could they please give you time to get there and scout out ALs.
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Chicagoannie21 Nov 2020
Extremely helpful information - that is exactly how I got the rehab to keep her longer. And it was 100% the truth. She would have been extremely at risk going home and I know home health would last 2 days. Fortunately she has a good supplemental insurance which did kick in on day 21 at the rehab, so her copay was only $57/day. She went private pay last week as Medicare did draw the line on her lack of progress in therapy but the rehab did try and did get her an extra 3 weeks covered under those 100 Medicare days. So I got the time I needed to look at 12 different places, and WOW, what a difference among them, from appearance, cleanliness, professionalism, food quality, and the marketers - my goodness, a few of them were atrocious.
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Does she have $?
Like at least 10k available that you can use to pay for her stay? If so, she can move into a place as private pay.
If the rehab she is in as a patient also has a LTC NH unit, and they will take her as a resident, I’d go with having her stay there. She has a nice thick medical chart, they know what she’s like. You’ll drive yourself crazy trying to deal with the myriad of AL, MC & NH options out there plus deal with the hoard pit house.

So do you know what her finances are? If she has no $ to private pay then she will have to file for LTC Medicaid. In this scenario, it’s to have her transition from Medicare paid rehab patient to Medicaid Pending resident. For Medicaid she will need to basically be “at need” both medically and financially. Medically will be determined by what’s existing in her medical chart. If rehab is also a LTC Nh, they can look it over to determine if it meets “at need”. I bet it does. Now for the financials, she basically has to be impoverished with her nonexempt assets at a max of 2k and her monthly income under the max set by FL. If all she gets is SS $ & no other monthly income she’s going to be under the max. That house with the Lady Bird is a nonexempt asset so don’t fret on that. But remember you’ll have to basically be paying the whatevers on the place till forever. But hey now you can get crap thrown out!!!

I’d be very concerned that if you allow her any decision making on all this, she’s going to leave AMA (against medical advice)& land back at that house with have an ever worse fall and fetidness, yet another ER run & hospitalization. You come rushing back down from Illinois. Rinse & repeat. And it will be amid the Winter Covid wave. Pleae if you can don’t let this happen. The simplest is she stays where she is now. Yeah she will be quite quite peeved. But she’s gonna be unhappy no matter what, right?
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Chicagoannie21 Nov 2020
Supremely helpful financial information - thank you so much for taking the time. The LTC community I chose has a no-nonsense APRN who has met my mother at the rehab facility. Mom was told in no uncertain terms if she tried to leave the community AMA...called a cab and "ran away" or something similar, the authorities would be called and the state would take guardianship, and place her in a locked memory care, a facility that her daughter would not have vetted. I'm not sure that's 100% exactly how it would work. And I am sure mom doesn't remember being told this. But I'm glad this APRN will be part of her care team at her new community.

In Dec I will start repairs on her house and get long-term renters which will help pay for her care. I feel that I did everything I possibly could, looked at all health issues and care options, and made the best decision for her health and safety. Time will tell how much she resents me for it and if she will acclimate to a very nice LTC home.
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I would ask for a needs assessment to ensure that you are looking for the best facility to meet her care needs.

Remember to look into board and care homes. They tend to be cheaper and have a better ratio of caregivers to residents.

Best of luck finding the best fit.
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If there is no action on your part they would go to court to appoint a guardian for her. I am glad you are taking the time to start looking. It sounds like you will need to determine if she has funds to pay on her own and or you will need to assist the social worker on getting Medicaid started. Find out if the recommendation is for assisted living or nursing home care because most Assisted Living are private pay to the tune of about 7000 each month. It truly sounds like she needs psychiatric hospitalization first followed by nursing home . I doubt an assisted-living would take her in this condition and if they did you will start getting calls within a matter of days saying she needs to be somewhere else. This is going to take a lot of work on your part during your leave of absence. Once completed, you will feel much more at ease
Ignore ignore your mother's Rants and Raves. It is all part from her illness.
Once once she is settled you can tackle the sale of her home. If she fully owns it, you can apply any Professional Services to the bottom line.
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Chicagoannie21 Nov 2020
Thank you for your reply. Yes, I am waiting for the calls to say she needs to be elsewhere. Literally waiting like right now...she was just transported to her new home. The community I chose after thoroughly looking at 12, does have a memory care and of course, say they can handle her, their staff will not be offended, etc. etc. etc. We'll see. She can afford the level of care they have her at right now, thank goodness my father had a good pension. But I have repairs to do on her home, then will rent it out so future costs can be covered.
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Dear "Chicagoannie21,"

I'm glad to read all the things you plan on doing in your situation with your mom. I understand you very well. I am an only child too, her medical and financial P.O.A. and have zero help or input from her family who range in ages from 75-90 and all live in other states. So it's just my husband and I who handle everything as it comes up.

When my mom was in the rehab facility, I couldn't go in either but, she had a room by a window and that's when I first had the ability to see her since February 28th through "window visiting." Being that my mom is 95, most of her friends have already passed away, one is in a care facility and is unable to reach out and one family friend doesn't want to see my mom in her condition - she says she wants to remember her as she was.

Her rehab facility originally was going to keep her for maybe 10 days so that's why I said I was so thankful that she was there long enough to work feverishly in order to find a new facility through the Placement Agent. Everything has been working out very well.

I'm glad you will be requesting her to be tested for dementia even if they could start with just a basic MMSE (Mini Mental State Exam) that would at least provide a clue. It's a 30-point system. She used to score between 23 and 28 over the past several years but, her latest score is down to 14. Even the Neurologist she went to would use that.

Just wondering if she's ever been tested for a UTI as that causes a lot of different reactions i.e. hallucinations, confusion, agitation and many other things as it affects people differently - just a thought.

In her memory care unit at her ALF, they do a care plan using a point system. So she is currently at a Level 3.

Wishing you much luck!
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Chicagoannie21 Nov 2020
Hi - I never replied but thank you for your response. My mom was also rated at a level 2, maybe 3. I looked at 12 places that were suggested by the rehab and their social worker. I liked 4 well enough to have her assessed by their nurses. Her mouth got her eliminated from my 1st choice but I ended up with 3 other very good options and did choose one. She is transferring there this evening - YIKES. The community I chose does have memory care so she can transition there more easily when necessary. Mom has an official dementia diagnosis now so I feel a little relieved that her strange cognition issues are explained and more confident that I She did have a UTI back in Aug but it resolved. I let all the places I considered know about her personality and lack of filter...they all say "we've seen it all, she will be fine here" but my stomach is in knots just the same.
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Thank you everyone for your input. I will call the rehab and ask about a Placement Agent. I will request if they can get her tested for dementia or to see if maybe she had a small stroke, as her ongoing health issues don't seem, to me, to explain the decrease in cognition and her inability to properly use her walker, rollator, etc. Late July she was still driving, doing her own grocery shopping, folding up the rollator and putting it in the trunk of her car, etc., all on her own. While telling anyone who offered assistance to F-off. I will also ask about the respite care option if they call and tell me she needs to be out immediately.

I would feel a lot better about their recommendation for a Level 4 AL with memory care as a future option probably sooner than later IF she actually has a dementia diagnosis. When she calls on the phone, her nastiness is usually quite on point. When I met with the rehab 2 weeks ago, I kind of begged for the therapists to find some area of progress. She is walking 170-225 ft but has to stop and rest every 60 steps or so but she is stubbornly doing all the therapy as she understands if she doesn't, Medicare won't pay. Rehab originally wanted her d/c'd on 10/16 but have given her more time but no exact date.

She is in a really good rehab and I have been very impressed with all staff I have interacted with. Covid makes all this more difficult as I have not been able to physically see her, and am just going by what staff is reporting to me and mom's dreadful phone calls. Everytime I see the rehab # come up on my phone, I have that pit of dread in my stomach. I am the only child, and her medical and financial POA. Zero other family to assist with decision making and mom has no friends due to her abrasive personality.
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Thank you everyone for your input. I will call the rehab and ask about a Placement Agent. I will request if they can get her tested for dementia or to see if maybe she had a small stroke, as her ongoing health issues don't seem, to me, to explain the decrease in cognition and her inability to properly use her walker, rollator, etc. Late July she was still driving, doing her own grocery shopping, folding up the rollator and putting it in the trunk of her car, etc., all on her own. While telling anyone who offered assistance to F-off. I will also ask about the respite care option if they call and tell me she needs to be out immediately.

I would feel a lot better about their recommendation for a Level 4 AL with memory care as a future option probably sooner than later IF she actually has a dementia diagnosis. When she calls on the phone, her nastiness is usually quite on point. When I met with the rehab 2 weeks ago, I kind of begged for the therapists to find some area of progress. She is walking 170-225 ft but has to stop and rest every 60 steps or so but she is stubbornly doing all the therapy as she understands if she doesn't, Medicare won't pay. Rehab originally wanted her d/c'd on 10/16 but have given her more time but no exact date.

She is in a really good rehab and I have been very impressed with all staff I have interacted with. Covid makes all this more difficult as I have not been able to physically see her, and am just going by what staff is reporting to me and mom's dreadful phone calls. Everytime I see the rehab # come up on my phone, I have that pit of dread in my stomach. I am the only child, and her medical and financial POA. Zero other family to assist with decision making and mom has no friends due to her abrasive personality.
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Rehab currently have the Duty of Care. If rehab is no longer suitable & home is not suitable/safe either, then an inbetween place is needed until the appropriate place is found. By Mom (if capable), but usually by the enduring POA. Sometimes even Guardian is needed to this point.

Where I live any patients at risk of not getting home would be flagged early for social worker to have on their books.

We call our inbetween place either *respite care* or *transitional care*.

Don't panic. Ask to speak with the discharge planner or social worker & find out what they call the inbetween place.

You will have to decide on a facility & whether this is near Mom's house or near yours. You may wish to ask if any free/low cost counselling to support you through this process.

PS a thorough neuro exam by a Geriatrician or Pschologist will be beneficial to find out just what is going on with Mom & to choose the right level of care. The medical team will probably suggest this, if not, you can.
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This is what is known in the aging process as *the crises*. But don't panic. Just recognise this fact.

Rehab currently have the Duty of Care. If rehab is no longer suitable & home is not suitable/safe either, then an inbetween place is needed until the appropriate place is found. By Mom (if capable), but usually by the enduring POA. Sometimes even Guardianship is needed to this point.

Where I live any patients at risk of not getting home would be flagged early for social worker to have on their books.

We call our inbetween place either *respite care* or *transitional care*.

Ask to speak with the discharge planner or social worker & find out what they call the inbetween place.

You will have to decide on a facility & whether this will be near Mom's house or near yours. You may wish to ask if any free/low cost counselling to support you.

Best wishes to you on this next stage.
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Before they discharge her from rehab ask to speak to one of the facilities social workers. Explain to them what her house is like and that there is no one to care for her at home. They will likely put her into respite care wherever there's a bed available until you or the state are able to make a permanent situation for her.
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Dear "Chicagoannie21,"

When my mom nearly died of severe dehydration and COVID back in April, I had her ALF send her to the ER where she stayed for 4 days and they sent her to rehab. My mom used to be able to walk and dress herself until that point. She is 95 and the Discharge Case Manager kept wanting to know where she would be going upon release. We didn't want to send her back to her ALF because of what they allowed to happen to her without our knowledge. She ended up being on a week-to-week basis with the rehab facility as she was too weak to do the physical therapy. It was by God's grace that they kept her nearly 30 days. The Discharge Manager gave us the name of a Placement Agent that she worked with on the patient's behalf. This was in the midst of COVID so it was very hard to find a facility who would take someone who had COVID. The placement agent was extremely helpful because she had the connections, knew all types of facilities and had good communication with them. She gave us the name of three to choose from. My mom has Alzheimer's and as of May is in a new facility and in the memory care wing as well as under hospice care because she is no longer mobile and has lost a lot of weight.

So my suggestion is to ask the discharge manager of the Skilled Rehab Facility if she can recommend or works with a Placement Agent who can help you in finding the appropriate place for your mom with the health issues she has.

I wish you and your mom the best!
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