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She's 63, had a stroke 2 months ago, and is now in the second skilled nursing rehab and I already think it's not going to work out. I begged the hospital to sign my PFML (paid fam medical leave) and they said she needs max assistance PT care so suggested ANOTHER rehab. I wanted to take her home, get my 3 months off and care for her 24/7 with the assistance of a fam friend who agreed to move in as well. Social worker at hospital last week said OF COURSE lets do that and we'll overnight all of the equipment, but now it is back to square one. Any advice on how to get her home and still be able to get her in-home rehab? She is still on private insurance with Medicaid as a backup. Only child here, no family to help. Please any advice.

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My brother was in the hospital and they wanted to let him die because bystanders ( not the family members who took him to doctor visits) said he was terminal.
When we questioned that, they wanted to send him home on hospice to die.
2 baths a week (lol). A nurse and others as scheduled at least once a week.
I had no choice. Finally got him “rehab” before coming to my home. He was an ambulatory ( except when falling ) confused incontinent mess. And the laundry, bathing, house cleaning etc !
We finally got him stabilized with proper medical care from his regular doctors.
9 years later, he is not terminal, but it was awful while it was going on.
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Duff is Mom still in the 2nd rehab? How is it going now?
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It is, of course, your decision.
However, you do not have the medical equipment nor staff to support her 24/7, even if (as) you want to. And, stroke victims can need ongoing care. Are you prepared for this? not knowing how her health may change / what her needs may be?

Some of us (me) do not know what a PFML is.

I would strongly consider you get into therapy as this is overwhelming for you and I sense you need someone to talk to - to sort it all out. And examine what your needs are and what your mom's needs are. In essence, are you doing or wanting to do this for you or for her? I know this sounds cruel to ask - although you need to put her best interests ahead of your (emotional / psychological) needs / desires.

I don't know what the three months is about - ? vacation time ?
After that, then what?
Even if you have a friend / someone moving in, you will still need more care, and perhaps more qualified care of a nurse, or more.
You cannot depend on a 'friend' - they burn out too.

If you really believe that the two of you are 'enough' care, then you need to re-think your plan here.

While it sounds like $ is not an issue - consider: Be prepared to pay upwards of $20,000 / month for private caregiving and possible/likely ambulance needs (very expensive), and more transportation needs for hospitalizations, MD visits, or PT / rehab visits (if they would be out of the home at a facility),

Remember, you do not know the ramifications of a stroke. And, what follow-up care is needed, aside from being told 'maximum' -

While I realize you want to help your mom and be the primary caregiver, you cannot do all that is needed - as I see it, this is the reality. If she is / was terminal and you wanted her home for her last few months, I could understand.

YOU need to investigate home rehab care.
You need to do your research and find out who provides what ... and when ... and how.

What is your support network?

I am (trying to/) looking at this situation from you/r point of view and that of you mom's. Most people give advice / feedback from their personal experience. I am not. I am giving you an as objective 'overview of the situation' as I can.

If I were you and dissatisfied with the care, I would investigate moving her to another facility.

* Do your DUE DILIGENCE, which perhaps you didn't do the first time (as you are not satisfied with her care there).
* You need to really flush out to ensure she will get the best / level of care that you want her to get.
* Do not make a rash / quick or emotional decision. It will not serve you or your mom in the long run.

You do not, as I read this, tell us why you are back to square one.
So it is impossible really to respond accurately. (What happened?)
These 'things' will come up - perhaps regularly - with bureaucracy ...
organizations, including hospitals who are short staffed. Who'll do all this when you go back to work (?) in three months?

RECOMMENDATION_______________
It might be the 'best of both worlds' to keep you mom in Rehab and hire a personal PT / caregiver for several hours a day while she is there. This is what I would recommend.

I sense it won't be as 'easy' as another said ... 'try it and if it doesn't work out, you can send your mom back to another rehab.'

If she needs maximum rehab - why are you wanting to bring her home?
This is a major red flag to me - that you are not thinking this through.
I don't mean to sound cruel or scare you... I want you to be confident in your decision making and do your due diligence/research.

Gena / Touch Matters
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Igloocar Nov 2023
PFML is Parental and Family Medical Leave, which under many conditions employers are required to grant to employees--normally unpaid. The max you can get at one time (I don't remember whether you can ask for it more than once) is generally 90 days; i.e., 3 months. Hope this helps.
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Your mother is young at 63. Her best chance at maximum recovery from the stroke is for her to stay in rehab for as long as possible.

In-home rehab is nowhere near as good as what a rehab facility can offer. If the nursing home/rehab wants to move her see if it's possible for you and her to pick the rehab. Do a little research and find the best one. You say she's still covered by private insurance. Get her moved before that insurance runs out. Once she's on Medicaid there won't be a choice of what rehab she can go to.

Don't bring her home right now. Take full advantage of how ever much in-facility rehab she can get.

I did homecare for 25 years. I have taken care of many people who have had strokes and whose families had taken them home. The families certainly meant well and wanted to take care of their LO, but they were in so far over their heads with what the care needs actually are.

No one nurse, doctor, physical/occupational therapist, or social worker is ever truthful about what the real care needs are going to be at home. They will gloss over the seriousness of a care situation and give it a good sugar coating especially when a person's Medicare days and private insurance coverage is going to be running out. They will also make promises of endless support and resources available to you 24 hours a day. There are no such things. This is the line of BS families get told when a person's private coverage is going to be running out.

Now please don't get me wrong here because I speak from a long experience of working with families in homecare situations. I'm sure your friend is a good person. That they have the best of intentions for your mother and you and really want to help.

Unless they have a backround in homecare or have lived with a person with serious round-the-clock care needs, they will bail.
You can't count on this person even if they're homeless and having a roof over their head is contingent on taking care of your mother.

My friend, I have seen spouses bail on each other because the care needs were too much for them. Once happy marriages ending in bitter divorce because one spouse is a care slave.

The best place for your mother is in rehab for as long as she can be.
She will not be in rehab forever. When insurance stops paying for her rehab stay that is when she moves in with you. That is when you're going to need to take the FMLA to get her situated in your house. You will also need that time to get everything ironed out with what equipment she will need, homecare schedules, and everything else.

All of these things will have to get done and if at some point you go back to work after the three months, all her care plans will have to be set in stone so you can go back.

Don't take your FMLA now. Put her in rehab and do this the right way which is by careful planning, letting her get as long as possible in rehab to maximize her recovery, and to have your home set up and reliable paid homecare in place.
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Dupedwife Nov 2023
Great advice, Burnt. I hope the OP heeds your advice.
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Duff. Personally, I would bring your mom home. If at a later time, if things get too hard, then you can always put her in a facility, after exhausting all options, because there are always a lot of options.

These are our moms, and especially if they want to stay in their home we have to do everything in our power to make that happen. And believe me when I tell you, I could tell you horror stories I know of personally from being a caregiver for the elderly, and also from what my stepfather went through at two separate rehabs where they both almost killed him from extreme negligence. As well as what my mother went through when she was at a rehab for several weeks.

At least with your mom home, you know she's SAFE, she's with you, no one's hurting her, or ignoring her, or doing bad things. She's being *respected and taken care of.
I know one thing, if she has a chance of improving, it will be at home. I know too many stories of people where they're put into homes, especially where they don't want to be, and they get so miserable and depressed, and then the facility starts giving them all these different drugs that ends up ruining their minds.

Just bring your mom home ASAP and eventually over time, if you feel like you just can't do it anymore and you absolutely exhausted every option, then you can consider putting her someplace. But I would at least give her the chance of recovering at home with you, her daughter. And where you will know she's going to be taken care of.

Believe me when I tell you these rehab facilities are not good. They could put on the act all they want, no matter how fancy or expensive they are, I could tell you many stories.

If you are forced to have your loved one in a hospital or rehab or care home, you need to have someone sitting with that person constantly. You, friends, caregivers. You have to watch these places like a hawk.
I wish you good luck and I do hope you bring your mom home. Give it a chance.
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BurntCaregiver Nov 2023
@Lisa

You are mistaken here. There will not always be the option of putting the mother into rehab at a later date. There will be the option of a nursing home.

Do you know how rehabilitation for a stroke, surgery, injury, or accident works? The main part of a person's recovery is in the first six months with a stroke. As with any injury, post-op, or accident, with rehab it is use it or lose it. There is no coming back later.

She will not recover better at home if she's in rehab now. There will be the honeymoon period where she'll be happy to not be in a facility. There won't be physical and occupational therapists making her to do her PT and OT. Family behaves differently with family than they do with healthcare professionals. She will not improve past her current level of recovery now if she is brought home.
Right now will be as good as it gets.

The mother's best chance at maximum recovery is for her to be in a rehab facility for as long as she can be.
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Home rehab is much less intensive than in-patient rehab. I have twice had in-patient rehab after major spinal surgery, and I was actively in rehab for about 6 hours/weekday and 3 hr on Saturday. I also had to dress myself there without assistance for however long it took. If I was not successful, the O.T. would give a few suggestions. but that was it. I also had to figure out how to manage my food, although I was allowed to have assistance opening drinks. No way the situation could be duplicated at home with O.T./P.T. coming there a few days a week for 1-2 hr. (which is what normally happens when you graduate from in-patient rehab.).

Your mother may be very unhappy now, but her chances of a meaningful life will be much increased if she sticks to the in-patient rehab. that's being recommended. That they still want her to have more rehab is very good news, because it means they think she'll still improve more: rehab stops when you aren't improving. BTW, be sure that both of you are learning steps she can take to try to avoid future strokes. Sixty-thee is quite young for a stroke, as I'm sure you both know.
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AndSoItGoes Nov 2023
Wow.. 6 hours every day (except the day with 3hrs)? That rehab sounds quite different from the rehab that happens in most SNFs. I think I recall from my mother's discharge (post head injury) that she was considered too old/weak for the "rehab" where younger/stronger people go. I'm pretty sure her weeks in the SNF were considered / billed as "in-patient rehab," but it was nothing like what you describe. Visit from OT/PT each day, but folks showed up whenever, for brief periods, and often too late in the day for her to have the energy to even stand up. 

It sounds like OP has concerns about her mother's rehab, so she may not be getting the quality/intensity of rehab that you did. 

All the same, it's good to know that experiences such as yours exist.

Does anyone know the right terms for distinguishing between "serious" rehab like what Igloocar describes and the drive-by rehab I remember from my mother's time in a SNF? Do these types of facilities have different names?
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63 is young. She needs all the professional rehab she can get. 15-18 hours/week is more than you can provide. That is what she can get in a rehab hospital. You need to get educated, to know if future strokes can be prevented. Then you need to find a safe long-term placement for Mom if she cannot do ADLs independently.
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II recently brought a friend home from a rehab facility. It was not easy and the rehab seemed to want to keep my friend there for the money. I started asking questions and making calls to a social worker at the rehab center . I visited and made a lot of inquiries and advocated on behalf of my friend . The staff didn't seem to like that attention, and then , when her benefits ran out they were more willing to let her go. I made a lot of calls, used my own credit card to pay for her equipment, spend hours on conference calls with her Medicare and health insurance to understand what her coverages were and we're not. I sat in on one of her PT sessions at the rehab. They were more eager to get rid of both of us once I was on top of everything that was going on.

I was required to have three things in place:

1. Equipment

2. In home professional, CNA, hire someone or get trained yourself. You may also contract with dome income care giving agencies to be on their payroll after they fast track certify you

3. Follow up Dr apt scheduled with PCP

ThenThen of course had to provide a ride home and guarantee someone was going to be on the receiving end immediately.
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I don't have a lot of great advice- but I will say this as far as the work from home goes.

I think that if you choose to do this - and I'm not even remotely suggesting this is a good idea because there are too many unknowns and two people trying to do the work of 6 for extended periods of time never works out well for anyone. I think your heart is in the right place - but you aren't thinking 100% clearly about the full picture right now because you want to make sure she is home. And I get that - I really do. It just may not be the right option right now if she needs that much PT and OT.

That being said - I think if you ARE insistent on doing this - FMLA has to be the option you choose. (and again - I'm blatantly NOT encouraging this!)

But here is why. Since you qualify for FMLA - you clearly work for a company that has more than 50 employees. So that company will have certain expectations of you. Even if they are a family owned company that values their employees and treats you like family. At the end of the day they are a business.

Other side of the coin - if you work for a BIG company - I can almost guarantee you there are policies in place for working from home while providing care for another person. For a day or two - you can probably get away with caring for sick loved one - work around quite times and maybe reschedule meetings or work outside of hours. BUT after that day or two - people generally expect you to be present. Attending all meetings, getting your work done during "business hours". And in some cases, bigger companies even have a requirement that you have "other" care for the loved one during your working hours. (mine did when my children were under 12 - I could have them at home with me - but I had to have alternate child care in the home OR they had to be in school while I was working, or at daycare), in order to ensure that you are focused on your job during those hours.

Caring for a sick loved one consumes you - there is no other way to say it. If it is in your home (or their's) it is a 24/7 job. Scheduling PT/OT, doctor's appointments, bath aides (if you are lucky).

But you said she is max assist. My FIL is in a SNF because he is max assist. I'm not saying that she will end up in a SNF. I'm just saying that you REALLY need to think about what that really means. It means that you and her friend can pretty much count on doing at bare minimum over 50% of the heavy lifting and probably safer bet about 75% - while mom does about 25%. Because you aren't trained - that means both you and the friend are going to need to be on call 24/7 to help her - no switching off - because one of you shouldn't be doing it alone.

It's not just about the cooking and cleaning and keeping an eye on things. It's about the toileting and bathing, and doctor's appointments, and any time she needs to move. And she can't stay in the bed all day - or even in the same position all the time.

I know the mental aspect is very hard. On all of you. But I can't begin to tell you the mental toll that taking her home will take on you - and the physical toll - it doesn't matter how young you are - when you lift assisting a person over and over 24/7 - it will take its toll on your body. And the mental impact will be there for her too - because she will likely see how it is impacting you and her friend - even if you try to hide it.

So really think about this. I admire what you are trying to do - and frankly I would probably try it too with my mom. But sometimes logic has to win out over love in order to do the very best thing for someone you love so much.
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Start by showing the hospital staff that you can handle her care. Do all the things she will need help with: bathing, toileting, feeding, transfers from bed to wheelchair to toilet, giving meds... That will show staff that you can handle her care. That will help with moving things in your direction.

My only concern is what will happen AFTER your 3 months of family leave are over? She will still require the same level of care. If she only has Medicaid, she will not qualify for home health. This may be the reason why she keeps getting referred to SNF placement.
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Much good advice has been given here and the warnings to think twice about bringing her home with you doing all of the care are worth consideration. That said, you are the only one who can decide how much care you can handle and for how long. If she is only 63, then you are still young and need to pursue your life goals. Because she is only 63, she could need extensive care for years - literally your prime lifetime. I have been caring for my now 96 y/o bed-bound mother for three years + and even with several hours of assistance from a very capable aide, it is still a full time job. I am retired so at least I have the time. You are working and will have two jobs instead of one! When will you have time for yourself and who will step in to help you re-charge your battery?
This is a tough decision. She is your mother and your instincts are telling you that you will be a better care-giver and decision maker at home. You likely would be. BUT, only if this is going to be a short term recovery. From what you describe, her mental state is concerning for early signs of stroke induced dementia. Perhaps it may just be too soon to tell after her stroke. If I were you, I would save your family leave for now in favor of leaving her in rehab for as long as Medicare will pay. You can always opt to use it later if she does go home. Make sure you have Financial and Medical POA if you don’t already have it and if she is capable of naming you. You need a “durable” POA - not just a POA designation in case her mental state declines further. You will need to monitor what rehab she is getting in the facility like a hawk and be present for as many sessions as possible. I say this from experience. Most rehab facilities use outside contractors for PT and one hand doesn’t necessarily know - or care - what is happening with the other. I had to request copies of the PT providers’ notes from sessions after finding out that they were not really doing anything with my father after he broke his hip. He kept leaving his room looking for them because he wanted to do his PT. The staff kept chasing him back because it was during COVID. Kind of funny but also eye opening as to what a scam it can be in some facilities where the real goal is to get easy Medicare dollars. Also, if the patient says they don’t feel like participating for whatever reason, they skip the session and might not be back for days. Chances are no one will inform you of that unless you ask. As you can tell, I am not a fan of institutional care. I have had two parents in it and have stories that I won’t repeat on this thread. Listen to what they say about your mother and what they say they are doing but don’t necessarily take it as gospel. If necessary, make them produce care notes. I am not saying you need to fight with them, just be an advocate and active participant for your mother, and do your own research. I didn’t see any information about your mother’s financial ability to pay for care when the Medicare rehab period runs out but you will need to plan for that. If she is capable of recovering further at home after rehab, then she should qualify for home health care nurses and rehab specialists to continue to see her at home. Medicare pays for that. If she really needs LTC for quite a while then trying to do it yourself at home will be extremely tough on you as a younger, working person. Please explore your options carefully. If you do bring her home (assuming she is doing well in rehab) make sure that before she is discharged you get orders for all of the equipment you need to take care of her at home like a hospital bed, a walker, shower chair, raised toilet seat, grab bars, wheel chair, gait belt and possibly a Hoyer lift. Medicare will cover a lot of the cost if the facility doctor signs off on it as necessary. Good luck.
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DufftheDragon: Do not bring her home since you may not have the skill set to care for your mother who suffered a stroke.
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At your mother's young age, what is her prognosis for regaining her mobility? I would hope that it's good.

If your heart is telling you to bring your mother home and help her rehab, then you should do that. I would stop letting the hospital or whomever call the shots and demand that someone sign your PFML letter.

I'm my mother's caregiver (24/7) and she is 96 year old now. She has lived with me for 6 years and I'm here to tell you that it can be done. I brought her home after she broke her hip in 2020 and had PT come in 2x/week. The rest of the time, I would help her through the exercises and she recovered beautifully.

I have had to be okay with giving up pretty much everything that I enjoyed. Every day is stress and work.

The first thing I would do is have her PCP order Palliative Care, and and in-home PT and OT assessments with a social worker visit. The social worker can help you with support such as meals, care sitters so you can get a break, etc. Go after every resource that you can.

I would recommend that you get POA so you can speak with her insurance company, etc.
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LisaMG7 Nov 2023
Thank you. I agree with you. Thank you for what you've done for your mother, and all the sacrifices you have made for your precious mother. I have been there, believe me.
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Strokes can be lifechanging. Is mom making progress in the two months since her stroke? My father became my mom's caregiver after her stroke when she was released from rehab. The years were not good for either of them.
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A social worker asked me a question before I brought my LO home from rehab after a major incapacitating stroke. She said, "How do you spend your days now? What are your hobbies, and what do you like to do?"

I told her about my dance lessons, yoga classes, business and work.

She said, "Forget all that. You're a caregiver now."

She was right. And that is what I'm saying to you.
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I am so sorry to hear your mother had a stroke and that you are having to make some big decisions. It appears a lot of folks on this isn’t are telling you not to take on this responsibility. Yes there would be a lot of work for you if you bring her home, so you have to be clear on what the work entails. All of this is to say it is possible to bring a loved one home after a stroke and make sure they get all of the care they need. I took care of my mother at home for 24 months and 10 days before she passed away with the help of a home health nurse, nursing aide, doctor, and the physical and occupational therapists who came to my house during the week. My mother was in a skilled nursing facility right after being discharged from the hospital post stroke for a brief period before I brought her home for 24/7 care. My mother was bedridden and had a feeding tube as well as a catheter. She had to be turned every two hours. I learned from the folks at the snf how to provide some of her care before bringing her home and I learned even more from the home health employees. My mother could talk, she knew where she was, and she remembered who I am despite having multiple TIAs and stroke.

When I had to work, run errands, etc. I had a loved one or the aide from home health with my mom until I came home. I share all of this just to say you can bring your mom home to provide the care, but you need to make sure you have some assistance. Oh and the home health agency can help coordinate the delivery of supplies. They helped me get all the equipment my mother needed. If you take on this responsibility it is important to go into it knowing what will be required. I also found some of the hospital social workers to be helpful. I wish you the best.
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I can relate to what you are experiencing, with the exception that my mom suffered from numerous TIA's (mini-strokes) during my years as her caregiver. Scared the crap out of me every time, as I would think, "Is this the big one?" Luckily, that never happened. But over time, it effected her overall stamina.

In your case, I suggest you see how she responds to the treatment she receives in rehab, but make sure you are ACTIVELY involved. That means showing up to participate in her therapy sessions whenever you can and to ensure the facility is following the "care plan." I started my caregiving role when my mom was in rehab for hip surgery. I would make twice daily visits to see how things were going. One day, I found my mom still in bed when she was supposed to be having a PT session. When I asked staff why, they responded mom said she was tired so they just left her in bed. It was almost noon! I went directly to the nursing supervisor and said what is the sense of having a "care plan" if it's not being followed. From then on, I made it a point to actively participate in her PT and OT sessions as much as possible so I would know what to expect when she came home.

You noted she has Medicaid. Under Medicaid Managed Longterm Care, home visits by PT and OT would most likely be covered. It was a godsend in our case, as I was able to concentrate on my role as caregiver and not worry about medical costs. Mom lived to age 93, and was at home right up until the day before her death. Start checking into what your state offers now while your mom is in rehab, as the paperwork to get qualifed can be extensive. I wish you all the best.
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It is so hard making these decisions!
((hugs)) You said 3 months and I think - how does she know everything‘s gonna be OK in three months? And then if it is three months why not leave her in rehab for three months and she’s gets better there with the 24/7 care?

As someone else said your friend won’t be there forever and you will be alone eventually. You can hire help, but this gets very expensive. Caregiver burn out is real and everyone has their own internal limit. You can last much longer than you think, even years, it all depends on your mindset and the finances to cope with everything. Some of us manage OK, some of us become zombies with sadness and depression as our best friends.

I wish it was like caring for a baby.
it is in a way but…the baby is 5’5”, 140 lbs., requires 24/7 patience for their needs 1st…. and they are never going to grow up and care for themselves.

So think long and hard first.
you have emotional desire for it, so check that off the list. Now start listing everything else. And I mean everything. Time, patience, work, friends, finances, additional resources, additional money when that money runs out, etc. etc.

Emotional desire cannot be the only factor you’re paying attention to in this decision.

God bless you. This is so hard, so hard for everyone and that’s why we’re all here supporting each other.
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Please don’t bring her home! I was just like you wanting to care for my LO it took a toll on me. I believe Gods way of finally it sinking into my head was to slow me down. I am into 2 months of trying to walk again I had a torn meniscus and stress fracture. I don’t know what I would have done if I’d have my father here at home. Please take my advice your lo is better in a home where they can care for them 24 hrs. It hurt me to put him in a home but it was the best thing for both of us. God bless you
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From the financial perspective, do the insurance and Medicaid pay for all costs at the rehab? If yes, don’t move her home. If another rehab is needed, then do that.
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I too am an only child no family. Let me tell you—I took care of my mother for years. I couldn’t do it anymore. The stress was horrendous and I had no life. We had aides through Medicaid and that was a disaster Then I paid for overnight care which made me broke. Mt mom is 94 with tons of medical issues and finally one day she saw how terrible I looked. She had been hospitalized for a blood clot and when I spoke with the social worker at the hospital I just broke down in tears from exhaustion. She said “it’s time to look for an alternative.” So, mom is now in nursing home. I see her everyday and I’m very visible there but I have my privacy now and time to just LIVE.
Do not take this burden on. See your mom daily but leave it to the professionals to care for her. Please listen to the advice. I know it’s very heart wrenching but don’t hesitate to make the decision to leave her in rehab. Be proactive. Meet all her therapists and doctors. Ask tons of questions. Make sure she eats. Don’t get me wrong—caring for her from afar is a full time job. But it’s from afar. God bless you and I will pray for you
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Dupedwife Nov 2023
My heart broke when I read your experience with taking care of your mother. You did what’s right for your health and sanity. You will be blessed for doing what’s right for your mother. Great advice.
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Do. Not. Bring. Her. Home. 

There is a reason people are telling you to not do this. Hundreds of people on this board thought they could do it themselves too. Now they are exhausted, broken mentally (and physically) and wish someone had warned them. Consider the following:

-Whatever schedule you have now will be out the window.

-There will be no more dinners out, no vacations. Friends and family will say to call if you need help, but  almost none will volunteer to stay with her if you need time out. 

-When do you plan to get things like errands and grocery shopping done? She cannot be left alone. 

-Can you lift her multiple times a day and night?

-When she worsens, and she will, how will you handle the medical needs?

-Are your toilets, bathtubs, etc handicap-ready? Will her bed have safety rails? Are meds stored safely?

-Can you handle multiple toilet visits, butt wiping, diarrhea, bed urine, and getting her undressed/dressed? Multiple times a day/night?

-You will have to lock down your home to prevent possible wandering. Extra locks and possibly an alarm system to wake you if she leaves the house in the middle of the night. 

-Are you able to help with bathing daily?

- If she keeps you up at night, how do you plan to handle work/chores the next day? Same goes for working from home. 

- If you get sick or injured, what plan do you have for her care?

- You'll need aides. Are you okay with strangers in the house?

- If you are no longer able to care for her, how will you get her back into a nursing home? 

I've said before that people think they can "love their way" through caregiving. That love will be enough to sustain their energy and will. It isn't. Nor is it the same as caring for a baby. Caregivers here loved their elder dearly. They had to place their elder to save both of their lives.
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ikopel Nov 2023
Excellent response and insight. I just brought my mom home because the reviews of the rehab/nursing home facilities were less than optimum. My mom is 100 years old.
Im stressing out taking care of her at home. I'm stuck between a rock and hard place and my health and peace of mind are taking a toll.
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I will be honest and I have not read all the responses yet.
But I am going to be blunt in my reply I'm sorry if it is harsh.
What are the REALISTIC probabilities that mom will be able to recover to the point she can be alone?
What is the projected timetable for recovery?
Can you safely care for her in your home (or her home if that is the plan)?
Would your mother want you to leave your job (even on leave) to care for her?
Other than a family friend do you plan on having any other help? Caring for someone is 24/7 it is demanding, exhausting.
Is your family friend leaving a job also to help or is this person going to get paid?
Will you have physical therapists come in to do PO and OT or will you transport her to therapy sessions?

I think she will rehab better in a place equipped for rehab. If you do not like the place she is in now look for a place that does more rehab, but keep in mind that rehab sessions are prescribed and it is a set number for a specific time period. You can work with her when you visit. When my Husband was in rehab I would visit and we would walk up and down the halls and for extra work out I would sit on his walker and he would push me.

There is also the good possibility that your mom will be cognitively effected as well so you may be dealing with dementia along with physical limitations.
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Duff, when my mom went to rehab after her stroke, things started out okay. She went to therapy. Was making good progress. I visited every other day.

One day, mom said "you know, I have to pay for everything here.". I replied that her stay was being covered by Medicare. She rolled her eyes.

The next day, she told my brother that the aides were having sex in her bathroom at night. And that they were transporting dead bodies up and down the hallways at night.

The next afternoon, I sat with mom as Nurse Nancy handed her all her afternoon pills and explained what each one was. When mom finished the last one, she said to me "I have to manage my own medication here."

I asked what she meant and she pointed to her water pitcher and gave me a "significant" look.

I followed Nurse Nancy out of the room, trying to quell my rising panic. As we got to the nursing station she said to me quietly "we think it possible that your mom has developed Vascular Dementia, which is pretty common after a stroke. We've already scheduled our psychiatrist to see her."

Duff,let your mom settle in to rehab. Get a psych consult if the tales of huge mix masters continue.

(((Hugs)))
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So sorry about your mom having a stroke.

SNF probably suggest mom stay with them for a while hoping it will lead to permanent placement.
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My small tip for when you are hit with the GO HOME speech.

This is sharing a feeling - an emotional statement. So no need to answer with facts or reason - about Doctors giving permission or rehab goals, safety or anything else. Hear the emotion & respond with emotion.

I want to GO HOME.
Just listen. Absorb it.
YES, I want you to go home too.
Hug, hold hands, cry or just sit quietly.

Everyone's different but I found my LO was calmer if appeared to feel listened to. I know myself when I say *I feel.. whatever* & my sibling glosses over or reasons it away I kinda feel ignored/dismissed. So I try to hear it (even if hard to hear).
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PT has been ordered for her safety and to progress. Unless you are a licensed Physical Therapist your Mother should go to rehab if she is available and there is coverage to do so. You surely want her to make the best progress she is able.

You may then decide with discharge planning whether your Mom needs placement or not. If she does, your being there a month or so is not going to be enough; she will either need more care and placement or will be OK on her own when your Family Leave is over with.

I sure wish you luck, but without good rehab Mom will not get nearly the good recovery she will get with it.
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Duff (((hugs))).

I understand that you would like your mom to return to her pre-stroke state.

Unless it was a very minor stroke, that isn't going to happen. Strokes are life-altering.

What sort of prognosis has her neurologist discussed with you?
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What is it about this second rehab that isn't working out?

I'm so sorry that your mom had such a life-threatening experience in the first rehab. Were they reported to the Ombudsman and the Joint Commission on Hospital and Nursing Home Accreditation?

Is mom getting therapy? Is she able to participate and cooperate?

It sounds like she had a very serious stroke, one that may leave her quite incapacitated. And in need of 24/7 care.

Have you had a care plan meeting with the Director of Nursing and Therapy team?
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DufftheDragon Nov 2023
Thanks for responding, Barb. Second rehab we just got her into last night, I feel like there was no onboarding, no director present, just transfer paramedics put her in a bed (she now has a room mate). I asked what is the schedule for PT and OT and they gave me vague answer. Felt horrible leaving her there. Today she was dressed, but refused to eat and her mind is whipping up some wild tales (like she thinks the nurses are going to cook her for dinner, she described a larger than life Mix Master they showed her, doesn't help dude down the hall is yelling HELP ME HELP ME! all day and night either, just reinforces her wild tale). Care plan meeting is next Monday. I ordered a psych eval for tomorrow. I did contact ombudsman and Illinois Dept of Public Health and reported first nursing place. I just want her back home and better.
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I really think this a bad idea, let the professionals deal with her. This will be more than you can possibly handle.

Help her in rehab, visit her, help keep her comfortable and leave it at that.
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DufftheDragon Nov 2023
Understood. I may have to go this route. I just am so overwhelmed with her wishes to GO HOME. I thought her mental state would improve, then everything else would follow suite. Maybe it is more dire than I would want to admit.
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