Econdiva 2022 update (to "Buying a Parent a Home" thread)

[EconDiva]

Sending my prayers.
You’re aunt and her daughter sound like narcissists. My mother used to pull this “the family” crap which somehow never included me. “The family” could have spent the last few months figuring out where your mother went themselves. I am angry on your behalf.
I also want to reiterate not letting your mom live with you. And Don’t let the nurses pressure you into signing anything on release day.
Say your mother needs 8 hours worth of care every day. At 20 dollars an hour that’s 40k a year.

Happy to know I'm not crazy for being this angry.  I don't need this anger on top of everything I have to deal with right now.

I have gotten amazing advice (and even pm's) from people in this thread that I can't thank enough; early on I was advised not to sign anything. I haven't and won't do that.  Fortunately I have a few friends in the industry and they have been advising me as to how to redirect my conversations with the social worker who previously told me (not sure if you saw this) that my mother needs 24 home care.  She gave me a list of home health support starting at $18/hour.  I'm speaking back with her again tomorrow to (kindly) let her know that I don't have a home here, that I don't know when I'll have an accessible home that both me and my mom can live in, and that I can't afford any home health care so what is the next step for her as an indigent patient (i.e., acceptance at an inpatient rehab facility in her or a neighboring state via her 'medicaid pending' status for example?).  I have an attorney I'm next meeting with in two days and I was just advised today by a friend of my best friend who processes medicaid/medicare/disability/etc. apps regarding the steps she and I can take to start moving the process along with respect to my mother getting insurance, medicaid, etc.

I am just starting to feel a tad bit more confident that I have the right people on my side to be taking the right steps and advocating for my mother while not putting myself or her under unnecessary risk.

[iluvzbeach]

EconDiva, it’s so good you are expressing that anger (even if just amongst your internet friends here). You are sounding more confident & self-assured.

Keep doing what you’re doing. You are on the right path and you continue to be an amazing daughter. A loving daughter, with firm boundaries in place.

[former player]

Seconding iluvzbeach on everything they say, and I'm so pleased to hear that you have set up a knowledgeable network of real-life supporters who are well placed to help you.

[EconDiva]

Spoke to the social worker again yesterday.

I let her know I cannot pay for home health care and I don't know when I'll have a place suitable for both myself and my mom to live in; reiterating that I live in GA, not SC. That I continue to look for a place however I do not have a place safe for my mom to be discharged to.  She immediately went into this whole 'What happened EconDiva?  You said you would be there for your mom and you would help and you were going to do for her and support her and....etc etc etc.  That was going to be the plan from Day 1..so what changed?'  I told her I'm always and continue to look for a place, but my permanent home is in GA, I don't know when I'll find a suitable place and that the place is actually IRRELEVANT now that I have the info that she needs 24 hour care WHICH I CANNOT PAY FOR so having a home for her DOES NOT SOLVE FOR THIS.  (Mind you..in the midst of this discussion she says I'm being 'aggressive' with her...)

I asked what is usually the process for people in my mom's situation that are indigent and who don't have family who can pay for 24-hour care.  At first she said she's never seen it happen.  Then she said it's rare.  I asked her what is usually done in the rare cases and she said 'usually the family rallies together and comes up with the plan to care for/support the patient/pay for the home health..' and I interrupted her to reiterate that what I was asking for was what happens in the RARE situation that the patient does NOT have money or family with money who can pay for the care post d/c - she dodged the question.

She stated there is no where in my mother's state that will accept my mom on a Medicaid pending status.  She also stated that I should be aware that the charity my mom received for the next 12 months does not cover 100% (new news to me!).  When I asked her how much it covers she told me that was for me to find out by talking to the finance person as she has no clue and doesn't have anything to do with the cost side of things.  I also asked her if it was standard for the patient's family to go through alternate channels such as the finance person as opposed to going through her for everything and she reiterated she knows nothing about the cost side of things and that she's only there to get the patient discharged ('safely').  (So I assume this is indeed standard.)

She had also mentioned that my mom was accepted to this floor on a scholarship [or whatever it's called] because they were told she'd be discharged home to family that would care for her.  I did not know my aunt told them this (or if she did...but it's likely) so I really have nothing to do with that.  My aunt said she was accepted to the floor/received the scholarship based on the motivation she was showing.

The SW also stated I needed to be very concerned about my mother's potential future emotional decline the longer she stays in the hospital as being in the hospital bed every day was not good for her but particularly because my mother told the SW earlier that day that she 'wanted to go home'.  I said to the SW 'EVERYONE in the hospital wants to go home' -

I mean..really?  I feel like this is the social worker from hell.  As if she's been trained in some psychological gymnastic game of trying to guilt trip patients' families or something.  I don't find her to be of any real value/help and I do not trust her at all.  I just don't think she's being completely transparent with me about the options my mom has and me being uneducated and naive about all of this, I'm not able to personally pinpoint the gaps in info or what all of my options really are.  I pray my attorney consult goes well today and that my new contact through a friend who is helping me navigate the Medicaid and disability app process can continue to also help me.  (<--That person happened to mention to me that if my mom gets disability of ~$900 or more, in her state that means that she won't even be able to get Medicaid (!!).  This was mind blowing to me and I'm honestly so disheartened by the healthcare system here going through this whole experience.  And to think I'd been trying to visit places like Portugal because at this point I'm eyeing potential other countries to retire to based on quality and cost of healthcare..then this happens.)

Just trying to continue to take things one day at a time.  Right now, I'm still struggling to get back to work.  I've been back for a week and I've only attended a few meetings.  That's it.  I'm not working.  The level of distraction and volume of things I have to tend to is so high.  This is a raising concern for me now.  Maybe anyone who has been through a family crisis or life changing event that impacted their work can chime in on how they were able to keep their performance up/mentally assimilate back into work life.  I'm failing miserably at this right now.  Maybe this weekend I'll make a list of things to ask to have taken off my plate.   Or maybe I'll consider going part time or even looking at another role at work...I don't know.  I already made a minor-ly bad car purchase mistake the other week (I now have a car payment for the first time in my life but I 'had' to get a car as you need one in my mom's state and I hadn't owned one in 10 years).  I don't want to make any bad moves work-wise at the moment but I'm struggling so bad.  I might reach out to EAP today.

Sorry for the rambling and being long-winded.  Looking back this whole series of threads should have probably just been a journal post or something.

[Dicey]

Keep telling yourself to put on your own air mask first. Then, breathe.

Sucks to say this, but the system is broken and the SW knows it.  They are tasked with an impossible job, because the social network everyone assumes exists mostly doesn't. This is a huge part of why mustachianism resonates so deeply for me.

Sending you piles of hugs. I am so sorry you are in this situation.

[former player]

I'm sorry you are going through this. Well done on establishing boundaries with the social worker: if she can't find somewhere for your mother to be safely discharged then your mother will be staying in hospital until she does.

I would be extremely wary of speaking to anyone in the hospital finance system.  They are likely to take even just speaking to them as some sort of admission that you will be taking financial responsibility - it's easier just to stay away from that completely.

I hope your lawyer has a way forward.  They should be on your side, but just as with the social worker you need to be prepared to set boundaries in case they start suggesting things you are not happy with.

[iluvzbeach]

Oh, EconDiva…you are handling this incredibly difficult situation so very well. I had to consider, and did implement, similar changes when dealing with my dad’s situation. I know we’ve exchanged PMs before and I’d be happy to chat further to share what I did and how my employer worked with me. EAP was a great resource for me. If there’s any chance you’d entertain a phone conversation, I’d be happy to walk through with you what I did to get through the worst of it. I feel like it’s easier to discuss, but I can also just detail things here or in a PM if you prefer.

[cchrissyy]

omg that is so very stressful!

agree that for the hospital and SW situation, the way to play it is your mom stays in the hospital unless/until they place her somewhere with appropriate levels of nursing care. 

you are quite obviously not available 24/7, nor are you a skilled nurse, nor does mom have funds. So she will be staying exactly where she is until a new place is found and it is the professionals job to find such a place, not your job to find it or to transform yourself into it.

i am very glad you have built a supportive team around yourself including a lawyer.

about work, yes of course you are terribly distracted.
my advice is two parts

lower your expectations for being productive. forgive yourself for little mistakes. in general, be more gentle with yourself. eat and sleep as well as you can. mute your phone.

disengage from the hospital more often. i don't know your workday but for example, a routine where you block off all "mom" calls and emails from 8 to 12, then you check them over lunch and only call back something is to help YOU or if there is a real emergency that can't wait for the next day. then mute everything again from 1-5. Remember your mom is already in a place where she gets proper medical care, and remember the hospital's desire to move her elsewhere is NOT your emergency and they will eventually solve the problem by calling people other than you. so you don't need their daily update calls when nothing is happening. you also don't need to know about calls from family members in real time. they can leave a message that you see at whatever time of day is convenient for you to check your phone, and when you are feeling burnt out it is totally understandable if you don't open those messages until the following day.

[cchrissyy]

oh another important thing

i see why your mind would jump to solutions like, maybe i should change my job or change where i live.

but those things from the core of your stable everyday life! even in the best of times those kinds of changes are stressful. they are big questions, they are a lot of work to implement, and lead to big adjustments of your daily routine. i think you should take those ideas off the table. you have too much going on to even be thinking about a move or a job change.

again i understand why it seems you should do something but i strongly believe it would be a mistake and that your energy is wasted thinking about it.  my advice would be to embrace the fact you have a comfortable, familiar home and job situation and be thankful they are stable factors during a time of extreme stress. 

[DeepEllumStache]

That social worker sounds stressful. I’m sorry.

[change_seeker]

Econdiva-

I'm praying for you and your mother's situation right now.  I don't have any concrete advice as I've never had to work through a scenario like this myself.

The expectations that our society puts on us (directly or indirectly) to care for our parents can be very difficult.  "They took care of you for 18 years, now it is your turn."  I saw my mother be the primary caretaker of my grandmother (her MIL) because she was the closest one, and it was hard to hear her how this affected their relationship negatively.

[SunnyDays]

This must be so tough for you.  And the SW is making it tougher.  Is it possible to switch to another one, or talk to her supervisor?

I would just tell her that she doesn’t seem to understand that you cannot help, so you want to talk to someone who can provide options.  Which she doesn’t seem to have.  She is trying to minimize the hospital’s responsibility for your mom, because she is not a money maker.

I would just use a set script, such as “I’m not able to provide the services my mother needs.  Please notify me when you find someone who can.”  Don’t let the SW suck you into more involved conversations - just repeat yourself like a broken record until she realizes she won’t get anywhere and gives up.

If you’re wanting to move to be nearer your mom, wait until she is settled in whatever place is found for her so you can’t be conned into taking her in.  Once that happens, you’ll have some bandwidth to focus on such a big move.

You’re doing great holding your line.  Keep at it.

[Another Reader]

This is a common problem for hospitals.  The social worker's job is to get your mom out of the hospital.  They can't directly put her out on the street, so they try to push you into taking her.  At some point she may indirectly through some sleight of hand end up on the street, so be prepared to deal with that possibility.

[Sandi_k]

This is a common problem for hospitals.  The social worker's job is to get your mom out of the hospital.  They can't directly put her out on the street, so they try to push you into taking her.  At some point she may indirectly through some sleight of hand end up on the street, so be prepared to deal with that possibility.

When my BFF was dying of cancer, they tried to put her out on the curb so they could turn the bed over. I filed an appeal with the State Insurance Commissioner, and stopped them in their tracks.

The SW kept telling me that there was NO "step down unit" that would take her, because she was still taking nutrition from a feeding tube, and needed a skilled nursing facility as a result. I finally got smart, and called her insurance administrative office, and asked if they could find a bed at an in-network SNF. Lo and behold, there was one within 10 miles of the hospital.

(I was told one reason for the shenanigans is that the HMO pays the premium to whichever entity was currently the "treater of record." By moving her to the SNF, the hospital would lose that cash - but by dumping her, they kept getting paid until she was re-admitted elsewhere). Don't know if that's true, but if it is....gah!

[EconDiva]

Oh, EconDiva…you are handling this incredibly difficult situation so very well. I had to consider, and did implement, similar changes when dealing with my dad’s situation. I know we’ve exchanged PMs before and I’d be happy to chat further to share what I did and how my employer worked with me. EAP was a great resource for me. If there’s any chance you’d entertain a phone conversation, I’d be happy to walk through with you what I did to get through the worst of it. I feel like it’s easier to discuss, but I can also just detail things here or in a PM if you prefer.

I am pm'ing you now...

[EconDiva]

I would be extremely wary of speaking to anyone in the hospital finance system.  They are likely to take even just speaking to them as some sort of admission that you will be taking financial responsibility - it's easier just to stay away from that completely.

Thanks; I did decide not to bother with/touch this at all right now.  I won't be reaching out asking about it.

[EconDiva]

omg that is so very stressful!

agree that for the hospital and SW situation, the way to play it is your mom stays in the hospital unless/until they place her somewhere with appropriate levels of nursing care. 

you are quite obviously not available 24/7, nor are you a skilled nurse, nor does mom have funds. So she will be staying exactly where she is until a new place is found and it is the professionals job to find such a place, not your job to find it or to transform yourself into it.

i am very glad you have built a supportive team around yourself including a lawyer.

about work, yes of course you are terribly distracted.
my advice is two parts

lower your expectations for being productive. forgive yourself for little mistakes. in general, be more gentle with yourself. eat and sleep as well as you can. mute your phone.

disengage from the hospital more often. i don't know your workday but for example, a routine where you block off all "mom" calls and emails from 8 to 12, then you check them over lunch and only call back something is to help YOU or if there is a real emergency that can't wait for the next day. then mute everything again from 1-5. Remember your mom is already in a place where she gets proper medical care, and remember the hospital's desire to move her elsewhere is NOT your emergency and they will eventually solve the problem by calling people other than you. so you don't need their daily update calls when nothing is happening. you also don't need to know about calls from family members in real time. they can leave a message that you see at whatever time of day is convenient for you to check your phone, and when you are feeling burnt out it is totally understandable if you don't open those messages until the following day.

You gave some VERY good tips and I am taking them to heart.  Thank you.

[EconDiva]

oh another important thing

i see why your mind would jump to solutions like, maybe i should change my job or change where i live.

but those things from the core of your stable everyday life! even in the best of times those kinds of changes are stressful. they are big questions, they are a lot of work to implement, and lead to big adjustments of your daily routine. i think you should take those ideas off the table. you have too much going on to even be thinking about a move or a job change.

again i understand why it seems you should do something but i strongly believe it would be a mistake and that your energy is wasted thinking about it.  my advice would be to embrace the fact you have a comfortable, familiar home and job situation and be thankful they are stable factors during a time of extreme stress.

Well, I don't feel that comfortable from the home perspective right now..my friend packed up my place in GA and I've got to get back over there in two weeks to move my stuff into storage here in SC (so I don't keep paying double rent).  I'm staying at a friend's house temporarily in SC for now but I am VERY very grateful to have her place to stay in.  It's also a plus that I have her whole house to myself.  But I get what you're saying.  I am indeed appreciative to have a place to stay...for now.  It may not be permanent but I have to talk to my friend soon about how long I can stay.  It's hard because there are still so many unknowns.

Been feeling really sad lately about how my brother won't reach out.  He knows because a cousin stated my brother responded to one of their contacts telling him what had happened.  I know I just have to not think about that.  Although my mom is in pretty good spirits, she breaks down about not hearing from him and it cuts my heart into pieces to see her in so much pain about that. 

Regarding work - you're right.  I did speak with a very trusted colleague at my employer yesterday.  She's an ex boss of mine actually and has been at the company a long time and with a very respectable role there.  She suggested I go out on disability which I had already been considering doing.  That was her initial reaction after I told her I'd been back to work a week and done no work essentially in the entire week.  I will contact EAP this week as I do have some hope I could improve, but my list of things to research and do/take care of is SO so long that I am having trouble seeing me being able to work.  Only if I step away from doing a lot of the things I'm doing meaning less visits to the hospital (it's a 2 hour commute there daily), less running errands during the week (I need to meal prep instead of stopping for breakfast and dinner, I need to limit stops for things she needs to be taken to the hospital to only occur on the weekend, etc. etc.). 

Now, the problem I just read about disability is that (although I'd get paid something like 60%), my job won't be protected.  The problem with FMLA is my job would be protected, but I wouldn't get paid (well, I have two paid weeks left and then another 8 weeks of unpaid leave after that).  I'm thinking I could exhaust the two weeks of paid FMLA leave, then perhaps vacation time (I have four weeks of that).  To be honest, I'm not trying to go back OOO until I know when she's coming 'home' as that transition period into a home will require me to take some time off.  That could be any day soon or not for months and months if she stays in the hospital for a long time and then goes into months of subacute rehab (if that option ends up working out).  In short, I'm not sure either the disability or the FMLA options should be taken right now.  It's looking like I need to find better ways to manage time and get refocused back on my job more than anything so I can keep getting a paycheck.  I want to ask for some things to be taken off of my plate but I have to think long and hard about that because it's really not ideal.  But I'm not in an ideal situation no matter how look at it so I just need to lower the risk of underperformance at work; being transparent about removing some of my responsibilities might be best.  Maybe somehow I can 'shift' to some tasks that are just easier...along with asking for no more direct reports to be assigned to me (which is supposed to be happening soon). 

[Sandi_k]

FML and Disability are not mutually exclusive. When I had major surgery in 2008, I filed for FML (to protect the job) and then used sick leave to meet my disability waiting period. Once that timed out, they moved me to disability, and I got a 60% paycheck.

The nice thing is that my employer will pay your employer *and* employee premiums for medical coverage for 3 months while on ST Disability, so I didn't even have to pay the normal out-of-pocket premiums.

[EconDiva]

I talked to a reputable attorney here and they stated I'm doing everything they would already advise me to do which is to get Medicaid and disability for her.  They referred me to a social worker they recommended for further support regarding options post discharge.

The social worker stated that in my mom's state Medicaid won't pay for a subacute rehab facility. 

She can either
(1) - go to skilled nursing post discharge which would give her 'some' rehab (going this route
I'd expect her progress to stifle I'd think)
Advantage is she's not in the home with me paying for home care...disadvantage is she's in a nursing home, or,

(2) - she gets discharged home with outpatient rehab and full home equipment with 24-hour home care as the hospital social worker has been stating
Again, not nearly as intensive as subacute rehab would be.  Major con is paying thousandssss in home care



I can't say that with time and information my options are actually getting any better.  It does indeed seem that there are practically no resources for someone in my mom's type of situation.  I had hopes there would be based on some poster's previous comments about there 'having' to be better options, but maybe that's the case in other states or something.  I don't know.

I know it's still super early, but we just hit a month in the hospital and still no progress in terms of having any movement yet on her impacted side.  I'm really trying to stay hopeful, prayerful and thankful but I'm pushing hard to keep fear from settling in. 

A friend of mine packed up my apartment in Georgia; I'll be going there next week.  I'll probably donate all the furniture (if time permits I'll sell what I can though) and just bring the boxes back into my friend's house that I'm currently staying in.  I've lost several rental homes now here in SC which I've never had happen before (I'll apply, then get a rejection weeks later that they leased to someone else).  So both the market for buying and renting is just pretty bad right now.  I really thought I'd be able to get a place for us but now I may have to move her in my friend's home.  There is some work to be done (bathroom attached to master isn't really operable..bathrooms have deep tubs which aren't ideal mobility-wise but I can't really do anything about that...narrow galley kitchen means my mom and I can't be in the kitchen at the same time, etc. etc.).  However, at least it's a place so if we had to stay here together for a year or so I guess it might end up being my only option. 

Because it's so early I still don't know how many hours a day I'd be looking at needing for in home care.  4 versus say 8 hours a day makes a huge difference.  I just got off the phone with a very practical and usually wise friend of mine who even suggested I consider going part time and/or thinking about taking a different role at work.  I need my job and my current salary however the cost of home care might mean I'm better off stepping down and using the extra time to do the caregiving myself.  Again, too many unknowns to know if that route will be best or not.

[former player]

What do the hospital/nursing home do when someone comes in who is both homeless and profoundly disabled - because that's what your mother essentially is.  They surely can't just put them out on to the street? Or is that just how parts of America are?

Could your mother go to the nursing home with outpatient rehab visiting her at the home, instead of her lodging with you at your friend's house?  That might be an interim solution.

[EconDiva]

What do the hospital/nursing home do when someone comes in who is both homeless and profoundly disabled - because that's what your mother essentially is.  They surely can't just put them out on to the street? Or is that just how parts of America are?

Could your mother go to the nursing home with outpatient rehab visiting her at the home, instead of her lodging with you at your friend's house?  That might be an interim solution.

Regarding your first question, my understanding right now is my mom will stay in the hospital until Medicaid kicks in.  The social worker did finally end up stating this.  So I should clarify that they are not trying to discharge her 'right now'.  Once Medicaid kicks in 'and' once she reaches the point where the hospital says she has reached maximum benefit (meaning they cannot do anything more for her), then the options are the two options I mentioned above.  Clearly the social worker will push for the option of discharging her home and I will push back against that so it might mean she ends up in a ridiculously crappy nursing home in that little town the hospital is in.  I am trying to see if there is another nursing facility option however right now the social worker is saying there isn't anywhere else in the state she can place her.  I don't know I could deal with her going into a nursing home; I'm not sure if it's best because she'd be somewhere 24 hours or if its worse because of the state of care in this type of facility in the town she's in (as you can imagine it is NOT good).  Now, the issue is we don't know how close we are nearing the point of 'maximum benefit' - more conversations will be had to clarify this important piece.

Not sure about your 2nd question but I will inquire about that.  The way things are going I'm assuming the answer will be the usual 'Medicaid won't pay for that' but I will investigate.

[mozar]

Can you visit the “ridiculously crappy” nursing home? My aunt who is schizophrenic lives in a halfway home in a small town near Norfolk Virginia. In a small town they might be more caring than you think.

Will you be able to physically pick up your mother, carry her into the tub, then pick her up and take her out? My uncle did that when he was caring for my grandmother. I don’t think you understand how difficult caretaking is, which is why everyone keeps telling you not to do it. People who do it are trained professionals.

[SunnyDays]

I've tried to keep track of all the details of your situation, but I'm probably missing some, so what follows may or may not be of help.

There could be more housing options than you think.  Consider these:
- find a home that will accommodate another person and hire a care aide for free rent and a small stipend.
- will Medicare provide a base rate for a better facility that you can top up?  (I know nothing about the American health system.)
- move to another place altogether that has a better but affordable care facility.  You work from home and she may not be able to access the amenities she enjoyed in her current town.  What kind of quality of life will she have if she stays there?  Is there any real reason to stay there?
- Look for someone in a similar situation where they can live together and share care staff.

What is your mom's mental capacity?   If it's diminished a lot, it's much more difficult care than if it's just physical.  Even physical care is hard if she needs help with all aspects of mobility - walking, toileting, dressing, eating, bathing.  What does she weigh vs you?  Dead weight or can she help?  There is equipment that can make things easier, like Hoyer lifts, but they're expensive and a rental is not likely to allow it.

Consider the cost of her being at home.  She might need lots of special equipment and therapies, which will cost $$$.  But also, your time, because who else will arrange for the delivery and set-up of equipment, make and supervise therapy appointments, etc.

I know it's scary to have to put your mom someplace you consider suboptimal, and I commend you for wanting to do all you can, but you really do have to put yourself first here.  You can't sacrifice your whole life for her, or your physical and mental health will break down.

Take care of yourself.

[EconDiva]

Can you visit the “ridiculously crappy” nursing home? My aunt who is schizophrenic lives in a halfway home in a small town near Norfolk Virginia. In a small town they might be more caring than you think.

Will you be able to physically pick up your mother, carry her into the tub, then pick her up and take her out? My uncle did that when he was caring for my grandmother. I don’t think you understand how difficult caretaking is, which is why everyone keeps telling you not to do it. People who do it are trained professionals.

Yes I can visit some of the homes that might end up being options.  One major drawback is Medicaid won't pay for rehab in the nursing facility.  At least according to the social worker.  Trying to understand if that means my mother will stay in the hospital even after Medicaid kicks in so she can continue getting therapy as it wouldn't make sense to put her in a place where she couldn't get it anymore as this is the number 1 thing she needs in order to get better/improve.

I can't physically do any of the things you mentioned.  I acknowledge this.  Which is why bringing her home is a huge issue as I can't pay for someone to do it in the home either for most of or up to 24 hours in a day.  If a skilled nursing facility is the only other option I'm not happy about that either and again just hoping she stays in the hospital long enough to recover.  I'm already getting comments from family about how they 'just know' 'I'm not dare considering putting her in a home'.  I know these things shouldn't bother me but they do.  I've never quite been in such a complex situation where I've gotten so much conflicting info and still have so many unknowns yet am getting pressured to do something about the situation.  It's a lot to consider and I do want what's best for her but I acknowledge needing to be careful not to ruin my own self in the process. 

[EconDiva]

I've tried to keep track of all the details of your situation, but I'm probably missing some, so what follows may or may not be of help.

There could be more housing options than you think.  Consider these:
- find a home that will accommodate another person and hire a care aide for free rent and a small stipend.
- will Medicare provide a base rate for a better facility that you can top up?  (I know nothing about the American health system.)
- move to another place altogether that has a better but affordable care facility.  You work from home and she may not be able to access the amenities she enjoyed in her current town.  What kind of quality of life will she have if she stays there?  Is there any real reason to stay there?
- Look for someone in a similar situation where they can live together and share care staff.

What is your mom's mental capacity?   If it's diminished a lot, it's much more difficult care than if it's just physical.  Even physical care is hard if she needs help with all aspects of mobility - walking, toileting, dressing, eating, bathing.  What does she weigh vs you?  Dead weight or can she help?  There is equipment that can make things easier, like Hoyer lifts, but they're expensive and a rental is not likely to allow it.

Consider the cost of her being at home.  She might need lots of special equipment and therapies, which will cost $$$.  But also, your time, because who else will arrange for the delivery and set-up of equipment, make and supervise therapy appointments, etc.

I know it's scary to have to put your mom someplace you consider suboptimal, and I commend you for wanting to do all you can, but you really do have to put yourself first here.  You can't sacrifice your whole life for her, or your physical and mental health will break down.

Take care of yourself.

I know it's a ton of details to keep up with; it is a lot.

Right now I'm waiting for her Medicaid to kick in; I was told her discharge plans can only be to a location in her state the Medicaid application is pending in.

I appreciate the suggestions; it had recently been suggested to me by two people that I consider a live in caregiver to do everything as their rates would be much better supposedly.  One person has a friend who is a live-in caregiver that will soon be available and charges $2400 monthly.  Not great but much much better than paying $15 an hour at 12-24 hours each day.  Still can't afford it but if half of it was covered by say my mom's social security disability and medicaid or other benefits then it may become somewhat of a plausible scenario.  I also have a friend inquiring if I could seriously start considering just moving to another country now where in home caregiving would be significantly cheaper than the US.  I think that's a far far less likely scenario considering the logistics of moving, her  likely hating such an idea/not adjusting well and the huge issue of navigating healthcare in a new country (let alone the whole visa/residency process).

I'm moving states in a few days and at this point just trying to take things one day at a time.  One of my directors stated she doesn't understand how I'm working right now and I thought to myself 'I don't know how I am either' but I've had to back off on the hospital visits.  I am going 5 days now instead of 7 and some days I am only there for 2 or 3 hours.  Also, no matter what I am trying to go to bed at a reasonable time/take naps, go to the gym and eat 'reasonably' healthy.  If I can do those three things daily (I am really working hard at it), I am doing ok.  Unfortunately work is still falling a bit behind but maybe after I get the move stuff done and over with things will start to normalize a bit..not sure.  We shall see.

[DeepEllumStache]

I'm already getting comments from family about how they 'just know' 'I'm not dare considering putting her in a home'.  I know these things shouldn't bother me but they do.  I've never quite been in such a complex situation where I've gotten so much conflicting info and still have so many unknowns yet am getting pressured to do something about the situation.  It's a lot to consider and I do want what's best for her but I acknowledge needing to be careful not to ruin my own self in the process.

Oh are these relatives volunteering to provide or pay for 24 hour care? Maybe make all the arrangements and find/pay for a suitable place?

Ugh. Sorry you’re getting these comments.

[EconDiva]

I'm already getting comments from family about how they 'just know' 'I'm not dare considering putting her in a home'.  I know these things shouldn't bother me but they do.  I've never quite been in such a complex situation where I've gotten so much conflicting info and still have so many unknowns yet am getting pressured to do something about the situation.  It's a lot to consider and I do want what's best for her but I acknowledge needing to be careful not to ruin my own self in the process.

Oh are these relatives volunteering to provide or pay for 24 hour care? Maybe make all the arrangements and find/pay for a suitable place?

Ugh. Sorry you’re getting these comments.

Hell to the NO.

[EconDiva]

SW just called to state they found her a bed in a SNF in the city I'm currently staying in. 

More details to come as they stated they don't know if rehab will be done in the SNF or not.



ETA - below are the questions I want to get clarification on from the SW. I am going to take off the rest of the day today and head over to the hospital to talk to my mom and the SW:

Who is covering the cost of the transportation from the hospital to the SNF?  Who is transporting her?
How long is the SNF agreeing to keep her there for?  What is the maximum amount of time she can stay in the SNF?
Is she being accepted based on her Medicaid pending status (how is the cost of the SNF being paid for)?
Why can’t she get rehab (if she can’t get it)? 
How long will Medicaid pay for her to stay in the SNF?
If she can get rehab, who will pay for the transport to OP rehab?  Or is there an option for her to be getting the rehab in the SNF?

[iluvzbeach]

EconDiva, this sounds like great news and the questions you ask are excellent. As long as there is no expectation or obligation for you to pay, then the facilities involved can certainly take on responsibility for figuring out how (or if) they’ll get paid. Try to not let it be your problem or concern. I know it’s easier said than done.

Questions I had…has her doctor provided any indication as to what level of recovery they expect your mom to make? I know in the past your mom has expressed a desire to stay with you. What is she saying now? Are you feeling guilt to have her with you, or is she accepting of the need to go to an SNF?

You’ve handled everything so well. I think that once you can get her settled into a place, and in a regular routine, you should begin to see some return to normalcy, at least until the next crisis (hopefully with some time for you to recover before then.)

[iris lily]

FML and Disability are not mutually exclusive. When I had major surgery in 2008, I filed for FML (to protect the job) and then used sick leave to meet my disability waiting period. Once that timed out, they moved me to disability, and I got a 60% paycheck.

The nice thing is that my employer will pay your employer *and* employee premiums for medical coverage for 3 months while on ST Disability, so I didn't even have to pay the normal out-of-pocket premiums.

I don’t understand how the OP can “go out on disability. “What does that mean?

FMLA to take care of someone in your immediate family with health issue – yes. That I grok.

[iris lily]

I'm already getting comments from family about how they 'just know' 'I'm not dare considering putting her in a home'.  I know these things shouldn't bother me but they do.  I've never quite been in such a complex situation where I've gotten so much conflicting info and still have so many unknowns yet am getting pressured to do something about the situation.  It's a lot to consider and I do want what's best for her but I acknowledge needing to be careful not to ruin my own self in the process.

Oh are these relatives volunteering to provide or pay for 24 hour care? Maybe make all the arrangements and find/pay for a suitable place? …

Yeah, exactly.