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Sorry that you are going through such a challenging situation with the care of your mother. In my experience as a care provider for the elderly and special needs. I found that most seniors if not all, thrive better at home than at any facility. I also would encourage you to appeal for the continuation of PT. If it's not too costly try and set up help from a private person or an agency (Home Care Assistance is one of the good agencies out there). Bringing your mom to live with you certainly would be challenging and might throw a corkscrew in your budding relationship with your hubby, however, you know your family and relationship well to make an informed decision. An outsider (caregiver) help has been proven invaluable to many families. Praying for you and your family.
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Ashley,

I know what you are going through as I have had the same battle. In my case I am out of state, but my sister is local. This is a constant battle and I think you have to move your mom to the state you live in as you need to meet with these people in person to resolve issues.

“PT is going to stop working with her because they don't feel she's made enough progress “

Man I have fought this battle. I am talking BIG fight with the PT.  The law clearly states you do not have to make progress!!!! It is so frustrating dealing with a SNF. 

" The improvement standard was illegal. Medicare providers had conjured up a standard out of thin air, and to devastating effect. "

https://www.ncrp.org/2018/02/the-center-for-medicare-advocacy-can-build-on-past-victories-with-long-term-capacity-support.html

The Center of Medicare Advocacy filed a lawsuit regarding this specific matter in the case of Jimmo v. Sebelius. The outcome of that case is there is “No” Improvement Standard required for Medicare to cover skilled nursing and physical therapy. A doctor can order PT just for the patient to just maintain or not degrade.

Pub 100-02 Medicare Benefit Policy again stating the changes regarding Medicare Policy due to that lawsuit.
 
http://www.medicareadvocacy.org/wp-content/uploads/2018/08/Checklist.pdf
 
https://www.cms.gov/Regulations-and-Guidance/Guidance/Transmittals/Downloads/R179BP.pdf

I even talked to the lawyer that was involved in that lawsuit. The problem, is having said all that, you are dealing with a bureaucracy and nothing is easy. First you need to call the Ombudsman for your county and go over with him what is happening and the law about progress not required and setup a meeting with the Executive Administrator to go over your mom’s condition and why she needs to continue with PT.

What happened in our case was the administrator checked out mom and then assigned a more experience PT who deals with elderly.
“Moving home is nearly impossible as my husband and I would both have to quit our jobs which is a big risk”
Medicaid rules vary per state and you need to learn the Medicaid rules for your state. I think the best thing is move mom to your state. But there might be another option. I don’t know your mom’s finances except she is on Medicaid, but you can be on Medicaid and still have an income. So maybe an assisted living place might work. Again the rules vary per state, but in some states Medicaid will at least pay the cost for caregivers, but normally not the Cost of room and board.

And don’t let other people tell you assisted living will not take your mom, as that is what everyone told us. Different assisted living places have different rules, so you have to call around and discuss your mom condition. Right now my mom is not mobile and in Hospice at an assisted living. The assisted living feed her and everything, but they do charge extra for that level of care. I must add my mom was in this assisted living before she became immobile and they knew her and I doubt they would take someone off the street in my mom’s current condition.
I can tell you one more thing my mom hated the SNF, everything from the aids to the food. Prior to this mom had gone into a SNF before and hardly improved at all and then when she got back to the assisted living she made great progress with PT at the assisted living.
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The process is daunting for Medicaid however there are people who work for the system that will help you through the process. I don’t think I would choose to move her in with you and your husband at this point but I would consider moving her close to you in her own place if that is possible. That will probably work out for the best for all of you, she will need full time assistance as you said and if she improves it could either be eliminated or cut down to part time, just be willing and able to do some of it yourself. There are possibly daycare programs in your area where you could take your mother during the day while you are at work this would give her a social life which is a benefit for you as she would make friends or senior groups that get together for different activities, these two things would help with her depression.
Explore all your different options, call social services and talk to one of their adult services people if you have not already, they will know the different programs out there for your mom, and not just the ones in NYC call someone in her area as well.
I will say living with and taking care of my dad is one of the hardest things I have ever done and I say to myself at least once a day “ I don’t know how long I can do this” each day he regresses a little farther into his Alzheimer’s.
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Sonny65 Oct 2018
You're right. There are options but the sad thing is that they are so Hard to find nowadays. Most all of the Seniors Services are funded by the state and depending on how much, or recently, how much they received from the Feds; depends on the number of services and the length of time they are available by case load. Here in Illinois, one of the Worst in the country for these services, it took me 9 months to get 12 hours pf help/wk just so I can sleep a few hours a day; I'm a truck driver on midnight's doing 12 hour shifts and I have Wed as my Sunday. Most home care services staff only M-F 8a-8p. From what I've seen, NYC has the most options for sen care and are ranked near the top for quality of service. I'm my Mom's sole caregiver. She's 80 and has mid/late Dementia w/onset ALZ. Some days are great and then there are those days that last 48 hours. I've said the same thing: “I don’t know how long I can do this” but then I think about the fact my Mom raised myself and my 2 younger brother...all by herself for 20 years. She worked full time and also had 2 part time jobs for the first 10 years! So when I say “I don’t know how long I can do this” I realize that Mom MUST have said it and found the strength somehow; so I Know that strength is in Me too. I can see it's also in You. Just breathe and say: I Love You daily and your Dad's smile will give you that strength. GOD Bless.
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I agree with most of the suggestions here but I'd go one step further: I'd contact another phy (preferably one you know other than her GP) and have then go see your Mom as a "friend" to see if your Mom is being ignored because of her attitude on top of being a slow healer. The health care system for our parents is getting to be an assembly line. If they aren't complacent or totally docile & don't fit within the time frame decided by someone in the state capitol or in DC, they get pushed out for the next patient instead of trying to find a better solution. I would highly recommend having another Dr come to see her as if they were a family friend and see if they are actually doing their best for your Mom. If he does inform you that her care is being hampered by the lack of patience of the staff, the Dr would be able to help make the transfer of med coverage a little bit quicker and easier. Contact your towns Senior Services Center with your problem also. Sometimes they have affiliates in other states that will also look into situations like this. I do Not agree with some that say: let her get accustomed to being there. Her depression does have an impact on how her recovery will advance. She needs proper sleep but depression might disrupt that badly; too much or too little will slow her healing. Lack of appetite will definitely slow it down on top of the loss of reason to get better; generally seen as abandonment from her perspective. She does not have Dementia so I'd listen to her not just hear her. There Is a happy medium for the short term, a phone schedule. agree with her on a couple of times you two can talk for a decent length of time. Maybe when a show that both of you like is on and you can put the phone on speaker. Set and talk and watch the show "together'. It will be more rewarding and comforting for her than a bunch of 2 min calls throughout the day. Maybe even look into getting her one of those vid phone like on the TV commercial. That way she could see You, your husband and grand kids: if You have kids. You could also have her call when the nurses would stop in to do whatever they need to do and You can see and interact with them either daily or every few days. That might ease the situation til you can get a second opinion from another Dr that can scope the situation out for you. I'll say a prayer for your Mom and You. May GOD Bless You and give You strength.
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AshleyNicole, I realise that you're doing a great deal to keep in regular touch with your mother, including making those frequent journeys to see her.

Are you sure she is being completely truthful with you about her health conditions? Does she give you unrestricted access to her medical records? Do you speak to her medical, nursing and care staff yourself?

It's that passing mention of her having left ICU three weeks ago that's making me frown. What would you say is her main health issue?

You and your husband should not make any irrevocable decisions until you have a lot more clarity. I suppose I'm wondering if your mother is possibly trying to shield her newly married daughter from trouble.

One thing you can point out to her, in any case, is that you can only give her the best support if she shares all the information you need. It may be that home is the best place for her, and that it could be made into a feasible plan. But that is always going to depend on a complete assessment of her care needs.
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It sounds like NH PT has said not making enough progress for Medicaid guidelines. Having been the patient in a similar situation, when my many other medical problems, including something as simple to address as acute constipation, really wore me down.
I never knew when PT would show up. So I might have been about to eat, or just had three other services and really needed a nap.

While it is illegal, many NH want to clear that spot for someone with better insurance. If you are on Medicaid, or have a stingy private insurer, they want to kick you off services fast!

If you can afford it, this is my suggestion. Give her a break from PT for a week, then have them start on in bed strength, then towards walking. You may have to self pay, but this is cheaper than quitting your job.

It also gives you leverage. Call the head of the NH. Find out what are her best times of the day. Ask your Mom which PT she likes. Request that she get that therapist, a set schedule at her good times of the day.... don't pull her out from lunch, make her rush eating and socializing, etc. After all, You are paying.
Get copies of all treatment and progress notes! After a few weeks, resubmit them to her Primary Care Physician ... the one she had before the NH ( if that changed) and the insurance. Push Medicaid to pay. She will get worse if she only gets bedpans, or has to wait for staff to even use a commode next to her bed!

NH are so afraid of liability, they will not let you stand next to your bed to get an item from the waredrobe. Or transfer from bed to commode or wheelchair once you are able, without staff to supervise, and have a hate belt on. No wonder she is miserable. If I did so, I was scolded for being Non-Compliant, and Threatened that they would report this to my insurance! Who wants to be scolded for doing what you can when you start making progress, and bedbound in need because staff is busy.

Perhaps take a few vacation days, secretly get a doctor's order or note from state representative in Ohio, to allow you to visit 24/7...over ride their policies! Then visit, stay all day and night. Pop in and out without warning. They will pay her more attention, but do this for several days, then do it a few times. Find out what her day is really like. Find out what PT has been doing, and what they planned on doing, if she was making progress... details!

First, this will improve her quality of care and life more than weekend visits. Which might be enough to make a change.
Seond, if she knows you are paying for her PT, even if she refused, that may guilt her into participating. It is worth some vacation days or Paid Family Leave Time, to do this.

The other side of the the coin is, when I had been able to go up 3 steps with 2 aides, one of whom assisted me by the gait belt, and the other helped hold the weight of the walker. I did that twice, then had to be rolled back to my room exhausted. Then I went to the hope for testing, straight from an off site doctors appointment. I didn't pay to hold my room, & NH declared me strong enough to go home alone. I had steps, some without railings, to get into my house. No help at home!

Weekend visits help. NH are staffed down on weekends, expecting visiting family to help at mealtime, perhaps take people out for an excursion. They don't do OT, PT, or Speech/Swallow Therapy on weekends. They won't scold Mom I front of you.
So you have to be a bit sly. Listen in on what is happening with other patients. Do Not do NH job for them during these visits. Note the difference you see, and let your mom know before you leave.

She will also see that even if she left, things would not be as she expects, or imagined. Being sickly and unable to care for yourself sucks! The NH helped, but also did things that made me worse! I eventually recovered, but had to sell my house and move out of state to an apartment with no stairs. I went months with no Medicaid. It took 2 1/2 years to get in home services.
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I agree with Taffy re: PT only giving up when Mom refused to do therapy. It also sounds like your Mom's depression needs to be addressed, AshleyNicole. It makes a huge difference with my mom.
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Quick update! After hours of pleading today, PT agreed to give her two more weeks to see if she improves. They are adamant that they will cut it at that time if there is no improvement, but that gives me a few more weeks to find a better home for her without risking her laying in bed while she waits.
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Llamalover47 Oct 2018
Ashley: Good on them giving PT another try. Absolutely DO NOT quit your job and neither should your husband.
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What about assisted living? Or having private pay aide for a few hours a day? Or they send her home w Medicare aides?
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Check to see if nursing home has a social worker or a liaison that assists families with care decisions. Discuss your situation with them. They will help you to decide what to do. Good luck.
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Heavens! You are so young to be going through this. Just wondering: What do your mother’s curent healthcare providers recommend for her? Are you medically qualified to care for her? This could go on for years and are you prepared for caretaking for the longhaul? This is anrough road-I am doing it now. You are a young, newly-married woman, a very fun and exciting time in your life. I hope you ask yourself these questions before you make any decisions. If you think it might help you make decisions, maybe consider a therapist who can help you think this situation out very carefully before making any permanent decisions you may come to regret in the future. You deserve to live with your new husband and enjoy this time together without the encumbrance of being a permanent caregiver Right now. Maybe reduce your visits to once a month and allow those who are specially trained to care for her. Call her periodically between visits. I am praying for you to find peace and do what you have to do for your mom and you snd your new hubby. Sometimes the best care for a loved one is not the one they want-I say this bc I am almost there and facing some tough decisions, as well. Peace.
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Sounds like my late mom. There's nothing you can do except be there for her. I kept telling my mom to wait for the doctor to tell us about her progress. She had broken arm and leg before she went to the NH. My mom was so angry and she would cry because she lonely and she wanted to go home to lay on her bed. I couldn't take care because I'm disabled and my late dad was too old to help her at home.
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GraceLPC Oct 2018
To lay in her bed...this could be the touch tone issue! Like hospitals, many NH beds are not very comfortable. They have heavy vinyl on the mattress, for incontinent patients. Then a thin pad.
Companies make thicker waterproof pads out of breathable materials. I find even a $20 reversible comforter, folded in half, put under sheets on cheap hotel beds helped so much, I don't travel without one.
Work with NH to make the bed more comfortable. Mark anything you buy clearly. Make a sign to post above bed and on footboard to instruct aides and cleaning staff!!
Buy a quality pillow protector and bring her favorite pillow from home in a colorful pillow case....again, mark it clearly with her name. If you can, have it seen in.
This might help.
Also, bring her favorite lotion. Rubbing my mom down with a soft vanilla scented lotion, with Shea butter made a huge difference I the hospital. It masked the Hospital Smells.
It also made her room smell so nice..but not overpowering, that staff would stop by frequently, to check it out. These inquisitive checks, a pleasent break for them, meant they also noticed other small changes, improved care, more social.
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I've only just begun reading your issue and find that I agree with so many of the good ideas already posted here. You should not give up your life but if you were able to get some real time off..........a week to devote to helping your Mom. Of course you'd have to have some appointments set up in advance to maximize your time to its best use. When I was dealing with a similar issue from 3000 miles away, I contacted the Senior Ombudsman in my parent's state. She came and interviewed them in their home and made us aware of services that were available to help them stay in their home. After selecting several options she made arrangements for those services to follow up and begin service to them. Maybe your state has a similar program. The issue is more frequent than you realize. Good luck.
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Well done AshleyNicole!
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Have you discussed with her primary doc what is being done to address her depression? That can effect her having good days and bad. Maybe why she is doing poorly with pt?
She also might be depressed because she was living with brother in law caring for him somewhat. Thats a big responsibility. Do they get along?
What social supports does your mom have at home? Is she home with brother in law 24/7? She may need other social outlets to gain some purpose in life. That could be contributing to her depression and all these ailments, not eating right, and subsequent femor break?

It is not impossible to move someone closer to you. It might be better for her.
You can also call her county's office of aging. They can talk to you about what options are available. Reaching out to others/friends will make you feel less alone.
Make sure you keep up activities and to do some fun things too. You have to take care of yourself in order to take care of her. Good luck. Let us know how it goes.
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Hi, that is a difficult one, to be sure.

My mother moved in with me about three years ago. She is able to walk to the restroom, which is off of her bedroom, and we use a portable potty chair right by her bed at night. She doesn't walk much (and has no desire to walk more) but I am glad that she is not "incontinent". I feel that if your Mom wants to walk again, there's still hope that she can - and I feel for you both. It's a dilemma. My Mom is on the Home Health Care program through her insurance, Presbyterian, and they have been amazing with her. Maybe there is such a program in your state (it seems to be a pretty progressive state) such as that to where she could either move nearer to you or in your home. It's definitely a (I'm not going to sugar coat it) big challenge, but if it's something you want to try, well - it's a mixed bag, with its benefits and its drawbacks. See if there's a Long Term Services Division in your state that will send you an application so that you can receive some compensation or aide services, etc. I wish you the best - you are obviously a loving person!
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Please contact the ombudsman at the nursing home to assist you .. with Medicaid someone you may know can take care of mom and get paid .. you can also install cameras in the home and be able to watch her and the person taking care of her all the time
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