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Hi all - I'm new to this forum but looking for any advice. I am 30 y/o, newly married and living in NYC. My mother is widowed and lives in Ohio. Currently I'm her long distance care giver. I fly home 2x a month and I am on the phone nearly all the time. A year ago, mom was independent and living with her mentally handicapped brother in law who had his own aide services. After a broken femur, a bone marrow disorder scare and a plethora of unrelated health concerns, she spent the better part of the last year in and out of hospitals and nursing homes. She's currently in a SNF but transitioned to Medicaid because Medicare coverage ran out. She is miserable and desperately wants to return home. I'm struggling on what to do. PT is going to stop working with her because they don't feel she's made enough progress (she left ICU after an infection 3 wks ago so I do feel this is premature) and she's combative and depressed. She wants to keep trying, but they won't let her learn to walk again because they don't feel that it's going to improve.


I'm struggling as a caregiver what to do. Moving home is nearly impossible as my husband and I would both have to quit our jobs which is a big risk. I can look into waiver services for home health but she cannot get to the bathroom alone so it would likely be full time. We've considered moving her with us and hiring home health but Medicaid doesn't transfer state to state and the process is daunting.


How long until it's clear mom will no longer improve? She's so young and has no dementia diagnosis—she's just depressed and wants desperately to leave and isn't getting stronger. I have no idea who to talk to because no one my age has gone through this yet. I want what's safest for her but also what will make her happiest and I don't know that being in a nursing home at 69 will make her happy.

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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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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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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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Well done AshleyNicole!
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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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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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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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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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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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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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Ashley: Good on them giving PT another try. Absolutely DO NOT quit your job and neither should your husband.
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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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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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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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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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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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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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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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They seem awful dismissive of your concerns.

Is your mom compliant or combative? I ask because she could be giving you a different story than the reality.

I am not trying to be harsh, your mom has a whole multitude of serious medical conditions. I know 69 is fairly young, however, she may be physically worn out. Unfortunately not every body lives a long time.

How long has she been sick? You may need to prepare yourself for the reality that this is as good as it will ever get for her.

I am sorry that you are having to face this with your mom but it is not sudden and it is serious.

She can do exercises on her own if she is really determined and able to improve, they have shown her how to do strength training in bed and her wheelchair, guaranteed. It makes them more money the longer she is improving and getting PT, this would be covered by Medicare.

Are you able to talk to the therapist and ask them to be honest about her efforts at improving? I was lied to and made myself look like a complete fool as I was advocating for a fantasy.

I pray that you can get to the reality of the situation so you can make good decisions.
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Well most of them want to leave. Unless you are willing to change her nappies including clean her feces..keep her in there. You say she has no dementia. I don't want to sound mean but the more helpless a person becomes (and I've known people that this is a wilful decision), they can actually put themselves in a nursing home. I've known people who did this to themselves. Chances are she will never be happy unless you quit your job and be her full-time caregiver and give up your life, and even then she will probably complain. If she wants to leave she has to learn to take care of herself and not rely on caregivers..otherwise keep her there. Let me emphasize that last sentence.

Also you said she is on Medicaid. If you choose to let her live with you she may lose it because they go by "household income" -- and it's up to the state how they interpret that.
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Do you know if her nursing home is “acute care” or “sub-acute care?” My experience had been that acute care facilities are superior when it comes to dealing with complex healing issues.

The difference between the two levels has to do with how much PT a person needs. They calculate it in hours of services that include physical therapy, occupational therapy, wound care, iv medication delivery, etc.

https://www.burke.org/inpatient/admissions/what-is-acute-rehab

Femur fracture is often considered worthy of acute care. I don’t know if she has stepped down from acute to sub-acute already, but acute care would be preferable, especially with complications.

Are you generally happy with the nursing rehab facility she’s in? Is there a better one in the area that also takes Medicaid? Have you attended the care plan meetings (even if by phone)? The physical therapist has a lot of power in the situation, based on how they write their recommendations and record progress. However, it is the doctor that writes the prescription for PT.

First, you have to get to the bottom of why they are saying she is not making progress. Are they scheduling her PT at a time of day when her blood sugar is off and it’s more difficult for her to be motivated? Then they need to schedule it differently for when she is at the better part of her day. Is she going to PT, but in too much pain to make progress? Then they need to address her pain management. Are they scheduling PT at the end of the day when she’s too tired? Then it needs to be earlier. Talk to her and see if she can describe what conditions might make it easier for her to make progress.

Then, talk to her doctor about what they can do to make adjustments. Doctors in these places tend to only come in once a month. So, the first thing to do is to get a hold of the doctor, and talk to them directly. Speak to them about the “combination” of things that make PT necessary, and your mom’s young age, and her desire to meet her goals of recovery so that she can eventually get home and be more independent. The doctor can reauthorize PT.

Then, call a meeting with her care plan team to get to the bottom of things from their perspective. It’s their job to “create the conditions for progress.” If they are not doing that, they are not doing their job. Include the nurse supervisor, the social worker, the physical therapist, and anyone else who is relevant. Focus on ways they could design her program of care to “help her achieve success toward her goals.” Treat them as partners in achieving this success. Think of yourself as an intermediary communicator between your mother and the team. Patients are often too compromised by the stress of their condition to think clearly enough about what they need and how they can ask for it. Try not to be adversarial. Think of yourself as a coach and team leader getting everyone on the same page, and motivating them to make it work.

However, if you get the sense that they may just not be able to help her, consider looking for another place. Interview the PT people and nurses at the other facilities, and ask them how they would overcome some of the roadblocks to her recovery. Check out who the facility doctor is, and talk to them. See what their ratio is of patients to nurses to aides. It’s generally better to have a more skilled nursing staff, which consists of a higher nurse to patient ratio.

If you find a place that seems capable and eager to have her and work with her, have her transferred as soon as a bed becomes available. The staff of the new place will help you coordinate that with the staff of the old one.

I’ve been through this a lot with my mother-in-law who broke her hip and has dementia, and my father-in-law who has Parkinson’s and had a stroke, and my sister-in-law who has MS. You have to be your mother’s best advocate for what she needs, and take a hands-on role in identifying the impediments to progress and finding solutions to overcome them. You can do t
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This is such an incredibly helpful answer. I just had a call with the facility's NP who is unwilling to help—when I said that cutting her PT would be detrimental to her mobility, she said "we'll still put her in a chair once a day."

For now, I'm determined to get her to another facility while I look for longer term options, one with a more willing and understanding PT department.
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In my experience with my mom the only time Physical Therapists give up is when my mom refused to do the therapy that would help her. My mom is 90 and the Therapists still come by, she is feeling better and doing the things the Therapists ask. I’m saying this to say that at 69 your mom is still capable of improving, everyone is!!! But if she refuses therapy then there is not much anyone can do to force her. It sounds like you are doing an awesome job caregiving from nyc to Ohio! I moved to the state my mom was in because of the daunting process that you mentioned. I really get how you are feeling. The difference is I was single and moving one person is easier than moving two. I know the solutions will come in time, hang in there and take good care of YOURSELF first!! You deserve a happy stress free life. I too struggle with the feelings of responsibility of making everything ok for my mom; but it’s not my job to do that. I’m her daughter and piano and caregiver, she is the one responsible for what she feels and how she progresses through this time in her life. Hopefully this helps, you are not alone!
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Wow, this sounds similar to what I went through, however I ended up opening a small business and was able to work around the aides that sat with my parents.

I would suggest looking into an 'Adult Family Care Home or Adult Assisting Living' facility, sometimes they call them 'Residential Family Care Homes'. They are residential homes that take care of your loved ones. Your loved one is in a family setting and the loved ones are much more happier. Most are private pay but there are some that do take insurance. You would have to research and find out if there are any in your area. Do your due diligence just like anything else. There are good ones and there are not so good ones.
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I would suggest that you contact (hire) a geriatric case manager. This person could go talk with your mom and come up with options that would be appropriate for her. The case manager would also work with the family and get their input.

Go online to the Aging Life Care Association and you can find a geriatric care manager in her area.
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OMG I’m facing similar issues but she’s in her 80’s!? Wow, I’m her primary caregiver and closer to your mom’s age I’d be depressed, too. Do you have a LTC option closer to you? Are their family close to her there?? Start the Medicaid state to state process get a professional involved. If this is going to be her life for maybe 20+ years - move her.
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At age 69, she could possibly be in a nursing home for quite a while. That could be very difficult for her mentally and socially and very expensive for medicaid. I wonder if there are other options out there for her that would prove better for her and better financially for medicaid. They are starting to think creatively, group homes for example, to reduce costs for long-term situations. These group homes allow the person to keep more money each month too. I know in Massachusetts, they are in the process of setting up group homes for people who due to head injury are in expensive nursing homes. It is possible for a person to have an extended stay in a nursing home and eventually leave. If she stays where she is, as long-term, she is entitled to restorative care physical therapy...that is pt that prevents her from losing the ability she has. Some patients can improve with this subtler approach and strengthen over time. In this modality, with her younger age and lack of dementia, she can gradually prove that she can live more independently. My 88 year old dad almost succeeded in this. Between exercise classes and learning to scoot around in his wheelchair, after five months could toilet himself and walk with a walker safely. If a different illness hadn't knocked him back, he probably would have returned to his home. Place the responsibility where it should be. It is up to your mom to drive her recovery, but remember, she could be depressed. A series of illnesses and setbacks can be disheartening and it can take a while for her to build up her confidence to work at getting better. I'm not talking medication for this, by the way. I'm just saying that it's only natural to be discouraged with all the set backs. She can get through this; she's young. My dad had a challenging year and at first he wouldn't go to the group exercise class called Fit For Life where patients exercise in their wheelchairs. They work on simple mobility and strengthening with hand and ankle weights if they are able. So, I went with him. There I was exercising with the all of them. We had a blast. It helped jump start him. I did it a couple more times with him and after that, I would call him about 45 minutes before the class to remind him and encourage him to go giving him time for someone to get him ready. He started to look forward to it because he began to feel his improvement. Also, does your mom have trapeze to help herself adjust herself in bed. Dad's trapeze, which I requested, also allowed him to work on upper body and core strength; it definitely helped. Eventually, restorative pt can include walking with a walker etc. Long story short, you need to support your mom, but she must take the responsibility of her rehabilitation from this terrible and unfortunate series of illnesses. She is young and "with it" and might surprise herself. I really hope that she can safely move to another living arrangement. Good luck!
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You can understand her depression and wanting to return home if you've ever visited a nursing home. They are the best and only place once a person reached the point of no return but until then if you can find a way with home health perhaps, she might be able to manage at home. You might also look into an Assisted Living Facility, there are several here in our smaller town that will accept people like your mom who are still younger and no dimentia to contend with that seems more like an apartment situation that might make her more comfortable and more content, if you can find one that accepts medicaid. I wish you the best, it is hard for me to care for my mom who is in an Assisted Living Facility along with my husband - I go by everyday and do their laundry and see to them and it is exhausting but I wouldn't have it any other way. We do what we can for our loved ones as long as we can and you will know when you've done all you can. Prayers to you.
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AT1234 Oct 2018
I agree with this and I gotta say seeing her twice a month is not caregiving, you may have to find better living arrangements like mentioned group homes or something else bc she’s surrounded by much older people at the end of their lives do you really think she is?
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Sorry you are faced with these difficult decisions. I was a long distant caregiver to both of my parents who lived in NY for about 2 year. Racked up a lot of frequent flyer miles! I hired an aide and a family member but it didn't work out long term. Aides are very expensive ranging $16-$25+ and hour. I eventually moved them with into my home (way to much for me to handle) and then memory care facility.

Like many of the replies, your mom needs are far more care than you can handle. A SNF is the best care mom can recive now.

Start looking for a SNF and plan to transfer her Medicaid. My guess you might find better facilities in northern NJ. or upstate. Speak with an elder lawyer. Many will give you a quick phone consultation. Or hire one to get the process rolling. Otherwise find a social worker to help you transfer mom's Medicaid to NY or NJ.

Mom may or may not understand why she needs care and why she can't live on her own or with you. At least having her closer will lessen some of the stress involved with caregiving.

Good Luck! It will work out.
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Hi,

This is not an easy decision to be made. most of us dealing with this ( or have dealt with), had much older parents. Does mom use a wheelchair? Did she have activities she was doing before everything went downhill? Maybe where she is offers a lot to do to take her mind off not being home? It is not easy to make the right decisions for everyone. It is very painful to hear them plead to take them home, but you have to be the strong one, You are not abandoning her, you are trying to do what is best for all involved. You have a family too, and it gets too easy to put mom first from guilt ( been there, done that). It will not do anyone any good to let yourself be manipulated. Especially since mom has all of her faculties. Believe me, they pull out ALL of the stops! I am sure it is a lot more difficult be away & trying to coordinate all of this. I wish you the best.
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Thank you all so much for your helpful advice. A few things to be clear--medicare hasn't cut her PT, her therapist said she wasn't getting better. I fought it and I will be moving her to outpatient if they continue to try to cut. We're also looking at assisted living options in Ohio--many say they can care for people with her level of care. She can be left alone, but she just needs help changing and bathing.

One biggest kink to moving my mother to NYC is that she used to care for my uncle (he's mentally handicapped). He will be getting care of his own in Ohio now, but he desperately loves her and I worry that moving them apart will be detrimental to him as well. He cannot travel much nor could she if she moved.

Edit: She will have to be evaluated before she goes into AL, but there are a few AL homes so far that felt the preliminary paperwork provided by the nursing home proves she could possibly be a candidate for AL.
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Ahmijoy Oct 2018
Just a suggestion, but before you move Mom into an AL, make sure she’s evaluated by medical professionals to be certain you’re putting her where she needs to be. Who are the “many” who say she would be ok in AL? You need a professional evaluation and diagnoses so that if the AL is not sufficient for her care, you won’t have to move her again.

I know it will be difficult for both your mom and uncle. Would it be possible to use FaceTime or Skype so they can visit? Also, many cards, letters, photos, all to help them keep in touch.
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Hi. Have you tried a geriatric service coordinator to help you with all of the decisions and deal with people who work with your mother? Faith based agencies often have them available but you do need to pay the fee. I think it is worth it if you are long distance caregivers. I know, from experience, that if someone is not there to check up, residents in rehab and nursing facilities do not get the care they need. Also, medications are increased with not much oversight so some of these can contribute to her not being able to walk better. Three weeks after an infection is not long enough for PT to terminate. You can appeal the decision and I would if it were my mother. I appealed three times when my mother was going to be released from rehab because I felt she needed more and she did benefit from the extra time. Good luck.
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I haven't heard of a geriatric service coordinator, but it sounds like a great idea. I will research it now!
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