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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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You should be able to ask the doctor if she doctor for another round of PT. As far as discharge you can just remind her that she has to wait for the doctor to see much progress that she could live on her own to try to calm her down. From time to time her doctor does see her. You can remind her to ask when you are not there to ask the doctor. That may satisfy her complaints.

It is likely that she may never get back home. She would have to be able to make her own meals, walk, toilet or transfer. Please to not go for bringing her home with you without fully knowing what you would be in for. Plus being on Medicade and living with you would drastically reduce her services. You would have to quit you job and be responsible 24 hours a day putting your retirement in jeopardy. Read lots of posts here to get an idea what caregiving can be. There are ways to bring her to a SNF closer to you and transfer Medicaid. Speak to the social worker. At least it would cut down on travel. Also consider asking your tax accountant if your travel qualifies for a deduction.
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MACinCT Oct 2018
Darned spell check keeps changing things when everything was ok in the first place
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This is going to be an up and coming problem in this country. Right now the majority of care givers are seniors caring for seniors. But the next generation chose to have their children later, into their 30s. So now you have people in their 60s with children in their 30s. I am one of them. At 69 one daughter is 41 the other 33.

I agree with the posts, Mom is not going to get better. 69 is still kind of young to have the health problems she does. If no Dementia now, she will eventually have it. My suggestion is to have her remain in the Nursing home with Medicaid paying the bill. Maybe find someone who will check on her for you. At your age and with the economy the way it is, I would not quit your jobs. Remember, you are now married and your decisions effect your husband too.

Your responsibility to Mom is to make sure she is safe, fed, clean and cared for. Its what she needs now not what she wants. Tell her for now she needs to stay in the NH to get stronger. You will need to see how she progresses to determine what the next step will be.

When doing therapy, Medicare will not pay if she is showing no signs of improvement. Talk to the head therapist. Tell her Mom seems determined to get better. Ask why they feel there will be no improvement?
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I reread your profile. You said:

"I am caring for my mother Linda, who is 69 years old, living in a nursing home with age-related decline, arthritis, broken hip, depression, diabetes, incontinence, mobility problems, parkinson's disease, and vision problems."

This is a lot of problems for a 69 yr old person. If she goes home, who will take care of her, because to have medicaid, she has no money for caregivers. Poor lady, I would be depressed too. No one person could care for this woman. Parkinson's will progress and Dementia will set in. They go hand in hand. Since she is breaking things, good reason to keep her in the NH. Fall risk.

So sorry you need to make this decision.
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Thank you for your help. Does any one have experience with in home health for all day?
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Ashley, it isn't 'all day', it's 24 hours, which is three full time shifts, seven days a week. That's more than four full time employees. It's staggeringly expensive.
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I was in my mid-30s when I quit a job to do in home care with someone with Parkinsons and her husband. It was hell.

So these are my opinions based on experience. A person can stay at a SNF longer than requested as long as payment arrangements are made to cover balances until the deductible is met and insurance kicks back in. BUT, they will not keep someone who is not progressing in therapy. My exes mom used to shed crocodile tears and put on fake shows to people not around often and would get kicked out of the facilities for not making an effort. Once she got home, it was worse...omg, it drove me crazy listening to the whining.

The facility will send out outpatient PT and OT for about 6 to 8 weeks 2-3 times a week. The therapists had told us that for each day the person did not exercise it would take 3 to 5 days to rebuild what was lost....that increased the pain and the depression. It is just an unending cycle which will cause you alot of frustration and alot more work. Medicaid aides will come in limited hours based on needs but they cannot force a person to exercise or comply.

I know it is hard to put a parent in a home but I think it would be best for all involved. I would also look into a therapist to medicate her depression.
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In-home care is very expensive.  On days the aid is sick, or weather is nasty, you have to stay home from work to cover. What will you do at night?  With interrupted sleep, can you continue to work?  See an Elder Lawyer about transferring your mother to a nursing home close to you, and how to transfer Medicaid.  That way you can see each other more.

My MIL was in a SNF after surgery, and refused to do PT.  One of us told her point blank that she had to work at PT, or stay there the rest of her life.  She chose to work at it.  It sounds like this does not refer to your mother, however, as she has multiple health issues.  She sounds like she needs round-the-clock care.  Big hugs and good luck to you.  It's not easy to accept.
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As others have said, do not bring her home, do not quit your jobs, she has a lot of issues that require professional help. She will not be happy about living in a nursing home, period. No one says in my old age I'm going to live in a NH.

However, her needs dictate what kind of care she requires and it is 24/7/365.

I am sure you are feeling fear, she is fairly young and very ill, obligation, she is your mom after all and guilt, she's so unhappy and I have this life....it's called FOG and it is not a position to be making life changing decisions from.

You are just starting your life and as hard as it sounds, she's had her life, she could live 20 years in this condition and that would be so unfair for her to take 20 years of your life.

Medicaid will not pay for 24/7/365 in home health, it is cost prohibitive and the taxpayers would not have a penny left if that was offered. Can you and husband afford 20 - 25 dollars an hour (maybe more in NYC) to cover what Medicaid doesn't cover? Can you afford to quit your job, stay at home, become isolated, never have 1 minute privacy with your husband, never attend another social event, birthday party, wedding, christening, or just get your hair done? Because that would be your reality. So you would not just be unhappy you and your husband would be miserable, resentful and maybe divorced so she doesn't have to adjust to her reality.

She is making a choice to not adjust and to learn to live where she needs to be. You did not do this to her, please do not give up your life for her happiness. She is where she needs to be, it sucks and it seems so unfair but it is her reality and she needs to be encouraged to find happiness where she is. Activities and socialization need to be encouraged by you for her to make friends and let you have your life.

I would recommend not going to visit as frequently and don't take every call, she needs to do this on her own with you cheering her forward, right now she is strapped tightly around your throat and you are being dragged down. I know it is hard but you are now the adult in this relationship and you will have to make decisions based on need and not want.

You can do this and she will be okay in a NH, her needs dictate that is the best place for her, now and in her future. Please do not forfeit your life to try and make her happy.

Sorry for the book I am just sick with the options you are looking at doing.
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rovana Oct 2018
You are so right. After all, spouse comes before parent, every time. And in such a young marriage, it would be very unfair and destructive.  No one can "Make another person happy" - that is something we all have to do for ourselves, by adjusting to the reality we are in.
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I engaged all day in home health for a couple of months before placing my father in MC and the extended family has engaged in home care for 12-16 hours a day for various seniors. My 72 year old and otherwise healthy cousin currently has in home care following a bad fall where she managed to break both her arm and leg so she is stuck in a wheelchair for several weeks as bones heal.

We live in rural TN and have found in home CNA care through a local agency or direct hire to be very workable. I'm not sure the experience would be in the same in a metropolitan area of NY. Is your mother's OH location rural or big city too?

Since you and your husband have a full time job, I would suggest trying to find a good agency as long as your mother needs 24/7 coverage. If she improves to a point where she doesn't need someone there all the time, the a direct hire of a couple of retired nurses, stay home mothers with school age children, homemakers with grown children, etc. may work well.

Since your mother got out of ICU just 3 weeks ago, she may not be recovered enough to have the endurance necessary for a full PT program. I was in the hospital for 10 days followed by another 45 days of IV antibiotics for an aggressive infection at age 48 and it took me over a year to fully recover my previous energy levels. When my mother lost a high blood volume during hip replacement surgery at age 64, it took her about a year to fully recover too. Neither of us had the assortment of health problems your mother has. She may need time to recover while she sits in a recliner and does various non-weight bearing exercises to build endurance.

Another option you may want to investigate is smaller group nursing homes, maybe where none of the residents have dementia or are younger like your mother. We have some in our area that have as few as 8 residents in the home.

I encourage you to begin thinking of both short term and long term plans. Short term you may bring your mother home with 24/7 in home care and see if she improves, then engage in home PT. Long term would probably include relocating your mother somewhere within a hour of your home in a good care facility according to the level of care your mother needs and is likely to need in the next few years.
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If you are likely to live in NYC long term, the best option for you and your mother might be to start the daunting process of transferring Medicaid so that you can find a facility near you. Unless you can rely to some extent on family and friends close to her current facility, she is going to be lonely and you just can't get there often. It's going to be difficult for both of you. And for your husband as well - he will be facing all vacations spent visiting his MIL, as well as his concern for your stresses. Best wishes in a difficult situation.
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"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."

Based on my experience caring for my in-laws and MIL who had a neurodegenerative disorder that eventually caused her death, safety is always first. That is your new role - to keep your mother safe. Your mother may never be happy again and you cannot control her happiness. But you can control whether or not she's safe.

Just to give you an idea of how expensive in-home care is: we spent $38,000 a year on *one* 8-hour shift Monday through Friday, for an aide for my MIL. She helped my MIL for 2.5 years for a grand total of $95,000. And for the last year of her life, we *also* paid $25 per night for someone to come and get her ready for and into bed at night so that cost $9,125.

Read Roz Chast's "Cant' We Talk About Something More Pleasant?"
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Mom is determined to be unhappy and nothing can change that, she has to come to terms with what life has handed her and make the best of what she has left. Can she do that? Maybe not. Perhaps the help of some antidepressants would make life easier for her. Parkinson and eventual dementia usually go hand in hand so whatever you try to do will not make any difference to her and ruin yours and your husbands life.

As others have said make sure her life is safe and she is properly cared for and under no circumstances move her into your home.

Do you want to have children? Can you imagine trying to cope with aa screaming infant at 2 am when Mom is demanding her bed be cleaned up.

She has ruined her life do not let her ruin yours. Hugs.
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Ashley: Prices for home care.
You asked for ballpark prices for home care on a previous comment and I have some I got this week from a local agency in upstate NY. I’m getting Mom a companion for a few hours in her NH to try to keep her more calm at night. You could probably hire someone to visit your mom daily for a few hours at the nursing home, just as a companion to cheer her up a little. Maybe her mood would improve without moving her anywhere, while you try to figure out what to do. No idea if these reflect a national average or not but they seem reasonable for around here from what I’ve found.

Hourly:
RN 80 per visit
LPN 55 per visit
Home health aid, 28 per hour, 3 hour min
Personal Care aid 25 per hour, 3 hr min
Companion/ homemaker 22 per hr, 3 hr min

Daily based on 24 hour shifts:
HHA 645/day
PCA 575/ day
companion /homemaker 485/day
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Teri4077 Oct 2018
wow! very helpful data, rocketjcat! How do people afford it? I've worked full-time my entire life, and I don't have money to pay for that kind of care! I know that many people on this site (which I find very helpful!) say "don't have Mom move in with you!" but I don't see any other options when my mom's long term care money is up. That's this summer. I'm going to have to retire earlier than I would otherwise do, move to where she lives, and have her move in with me. The only other option is medicaid-funded housing, and I have not found anything in her area that is acceptable in my humble opinion. Many people here have talked about how bad NHs are, and they are absolutely right. My mom will not move anywhere else, as that would mean leaving my youngest brother. He is severely disabled. He is in a good group home, but one can't depend on his staff for all of his needs. So, I say again -- how do people afford it????
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i don’t want to second guess decisions made by PT. However, if someone wants to exercise and they have potential for many good years ahead, I would insist on continued PT to help her regain her mobility and independence. Maybe she can also learn how to exercise in between PT visits in order to more quickly get back on her feet?
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Hello Ashley. If I were in your Moms shoes I would be very depressed too. 69 years of age and in a Nursing Home is redicilously young to find One Self put into full time Care when Your Mom had so many great years left. Could Your Mom come to live with You & Family in New York City ?
I work part time with a Lady Who is 69 years of age and She Cares for Her 103 year old Mother at home in Her own Home. Here in Ireland the statistics are such that two thirds of Residents in full time Care at Nursing Homes could actually be Cared for at Home.
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minstrel Oct 2018
I also would be depressed to have to live in a nursing home thinking I could be there for 20 or 30 years, but i don't think the answer is to bring the mother to live with them in NYC, where most people live in apartments that are not very large and in this case would need to accommodate not only the mother but probably a home health aide.
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I am not so sure that Medicaid would not pay for a 24/7 aide. You should contact the county department on aging where she is to see about long term care in her home for her.
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meridianav Oct 2018
they for my moms' situation they give her so much it was 4 hours a day not for the whole week she can check but no more than 4 hours a day ..
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Don't take her to live with you! This would be a BIG mistake! She needs 24/7 care, so think about what your life would be like. I had the same issue with my mom. She was 98 and 2 months and living alone when she fell and broke her hip. She had surgery, went to a SNF for rehab and is now a permanent resident at age 100!

After two years, she still talks about going home which is very painful to hear. But, thanks to this forum, I realized that I would never be able to provide the type of care she gets in the SNF.

One suggestion for you would be, could you find a SNF closer to your home? Then you could see her more often at less expense to you. Good luck. It's not easy...
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why is she in a home ? & really what is her wishes when she wants to go ?? my mom never wanted in a nursing home .she had dementia .she wanted to go at home ..her home !! that she got ..i had to retire & so i stayed with her was sleeping at her end ,& she wanted to go in her sleep she did she may live over 10 yrs more longer than now or do you know other wise ..she is not happy there .. if you can get her out ..if possible you could ask other family members to watch her while you need free time if she needs someone to watch her . i bet she will get better at home & the food does she eat it ??have you seen there food ?? you should look at it !!! would you be happy there ??? put yourself in her place would you want to live like that?? 3 times my mom went in to do rehab work .the 1st was the worst the other one was better but she never ate the food i took malts to her she loved that ..my mom was VERY picky at her food .. so i hope you make a good decision ..good luck !!!!
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some reason i didnt see the whole story well so does she have other family members to watch her in ohio ?? could you move maybe .??she would maybe get better if not in the home if she is like my mom was she needs better food at least .i guess you got into this unexpectedly bummer good luck
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I'm so sorry for what you are going through. Because you're a caring daughter this is affecting you even more. As nearly everyone has said, bringing your mother to live with you is not the answer. When you leave her to go to work or socialize she may still be unhappy. Part of her unwillingness to adjust is that she is hoping you will take her to live with you, so you need gently to get her past this false hope. If you can move her nearer to you this would be ideal. Looke at the Jewsih Home for the Aged on the upper west side and Isabella Home at the northern end of Manhattan. These homes are better than most, especially JHA and there may be a waiting list. Do get on it! Leave mom where she is until you can arrange a good place in NYC because it's almost impossible for Medicare/medicaid to approve a move from one home to another in the same location. Best of luck.

You can appeal Medicare's decision to end PT.
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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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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,

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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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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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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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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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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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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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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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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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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