How do I bring my mother home for in-home care legally and safely?

No, don’t do this. You are absolutely asking for trouble. What’s the situation with the family friend? Homeless?

You can’t possibly provide intensive max PT assistance as you aren’t trained and it takes 3 adults to care for one adult. You and your friend have no relief. Where are The other 4 people you need to pull this off?

Your mother deserves to have qualified professional care.

Based on what you say in your profile, I think mom needs rehab at a facility that ONLY specializes IN rehabilitating patients with serious deficits. I wouldn't know where to begin with physical and occupational therapy at home with my late mother. I have no medical background or knowledge of physical therapy. And I wouldn't trust I'd get all the equipment and supplies necessary anyway!

I certainly don't blame you for being scared and leery to send mom back to another Skilled Nursing facility for rehab, after the nightmare you experienced before. 😑

Here in Colorado we have licensed acute rehabilitation hospitals that cover a wide range of physical and cognitive issues patients suffer from. Regular rehabs in SNFs do not do well with cognitively impaired folks bc they can't retain information or follow directions. The big one here is Spalding Rehabilitation Hospital. You can look it up online to get an idea of what they offer, to see if such a facility exists in your area.

I wish you the best of luck with a difficult situation. All the best to you and mom.

You don’t mention training that would qualify you to care for someone in this dire condition. This is not a situation where you just take mom home and you and your friend cure her with love. Far from it.

Please reconsider. Surely you don’t want to harm mom, you want her to have the best care. That means professionals.

Good luck.

Pre-Covid I was able to basically park myself at my mother's bedside and learn everything I needed in order to get her home. The CNAs were willing to teach me things like how to make a bed with someone in it. (I showed my gratitude for the tutorials by doing a lot of the care work--which of course also served as practice.)

I have a remote job, which meant I could work from my mom's bedside. I realize that's not an option for most people.

I watched a ton of YouTube videos and read training books for home health aides. 

While my mom was there (SNF) we added grab bars and such in her home, basically getting it ready for her return. An OT and PT arranged to come to the house and make recommendations, and there was home health for a while after that (nurse, PT, OT).

My mom was able to stand and transfer before I took her home. She was also able to walk a bit, and your profile suggests that may not be the case with your own mom (at least not yet).

I know what you mean about the mental state improving at home. But the physical challenges do seem pretty daunting right now. Any progress on the walking / standing endurance front?

So sorry you and your mom are going through this.

I am sorry your Mother has had a stroke. This is life changing.

Please ask yourself the hard questions.

Love.
What does this mean to you?

A rehabilitation facility. What does that mean to you?

Do you feel love is going to cure your Mother's stroke?

Do you feel being in a home environment will bring improvements better than exercises prescribed by Physioterapists & Occupational Therapists in a rehab setting?

I do understand the feeling to wrap someone up & bring them home ❤️

Go past this feeling.
Go to thinking.
Use your judgement & reasoning.

Can you get access to enough PT & OT in the home? Will you have a team of aides? Or just one friend to help - an unpaid friend will not last long. Solo caregivers burn out very fast.

I'd say do a 48 hour trial of doing ALL Mom's care in rehab to educate yourself on the real situation. Then have a cry. A big one. It's allowed. Then start to accept what the situation is.

I think this would be a task much too bit to take on at this point. Rehab sounds like the right fit at this time. 24/7 for 3 months with help of 1 person?? NO WAY.

I think you would do best to help your mom while she's in rehab. She can use extra help there and you do what you can do while still working. Let her get as much rehab and PT as possible and then see what she is able to accomplish.

If you bring her home now you will be stressed and burnt out in a VERY short amount of time. I would not do it.

So sorry for your situation. So difficult. Best of luck.

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.

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?

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?

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.

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).

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.

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)))

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.

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.

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

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.

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

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.

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.

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.

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.

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.

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.

DufftheDragon: Do not bring her home since you may not have the skill set to care for your mother who suffered a stroke.

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.

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.

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.

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.

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.