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Hi all, my mother is recovering from brain surgery for the 2nd time and is having a miserable, painful recovery, both physically and psychologically. She is so weak and de-conditioned that she cannot walk or use utensils and has to wear a diaper. She is so depressed and dejected on top of everything that's going on.


She was discharged from the hospital and sent to the only rehab facility that would take her, which is a dump and not equipped to care for her needs. She was denied acute rehab - the admissions staff said she wouldn't make enough progress.


The issue at hand is that the social worker at the sub-acute rehab she was sent to is saying that Medicare will only cover 30 minutes of rehab, 5 days per week. I was told by the hospital social worker, who's now out of the picture since they discharged my mother, that sub-acute rehabs would provide about 2 hours of physical therapy per day.


Does anyone know the truth of the matter? I am trying my hardest to get my mother out of this hellhole and into a decent rehab facility, but it is so, so hard to find a decent place that has a bed available.


I've been going in and doing gentle physical therapy exercises with her (she was admitted 3 days ago, so no rehab yet) just to keep her muscles from atrophying even more. 30 minutes per day is not enough to help her. It's awful and I'm losing hope.


Thanks so much, wishing you all the best.

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I have heard that there are limits on time per day. Since this is obviously paid for by Medicare, contact Medicare and provide them with all details. Then you will know the truth - and keep looking for a better place.
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EndOfMyRope: Since your profile states that your mother suffers from Glioblastoma, perhaps she requires hospice care. Love and prayers sent.
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Going to say something that may not be particularly helpful but............... you are the daughter we all wish for.... kind, caring, compassionate. Your mother is blessed to have you.

You have to be strong enough to participate in (and hopefully benefit) from acute rehab (it can be grueling) ..... which is usually 2x's per day for a total of 3-5 hours for Medicare to pay (assuming your Mom has traditional Medicare (MT) (red, white and blue card)); it she has a Medicare Advantage program you will have to check with them as they are required to offer the same services as trad. Medicare but not for the same time lengths.

Re: hospice care which might be an arena to investigate.... are you or your Mom associated with any religious organization that might be able to play caregiver roles in order to get home hospice? Interfaith caregivers is an organization that comes to mind but they may not be active in your area.

I'm glad to hear that you have an eldercare attorney involved to guide you thru the Medicaid process (that can be long and grueling too, lol) help you get information.

Wishing you and your Mom peace on this painful journey.
Please keep us updated.
Subacute rehab is generally 1x per day for an hour or whatever the patient can tolerate. MT will pay fully up to 20 days for rehab provided the patient is participating and progressing. Now in the STRs I worked for the max. rehab was usually about 1 hour. Of course, that was pre covid when therapy units were fully staffed. Are they saying they will only give your Mom 30 minutes or that she can only participate for 30 min? Big difference. Still you may want to check the Medicare.gov site and with other facilities to see about the 30 min limit.
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Have you talked to her doctor to see what they recommend? What a difficult situation for you to shoulder mostly on your own. The stress on you is a concern as well. Please take care of yourself.
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Go when she has physical therapy and learn the exercises. You can then do more exercising with her throughout the day.

Call the hospital your mom was discharged from and ask for copy of her records. Talk to social work or case management and have them print out the information they quoted you from Medicaid.
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EndOfMyRope88 - you are doing the best you (or anyone else) could do, in this situation. The likelihood that your mom will regain significant physical strength and cognitive function is pretty low, given her diagnosis. She made it clear that she doesn't not want to talk about dying...using the phrase - the program that does the best job helping with her comfort - is a nice euphemism.
I'm a former hospice nurse (nonprofit -focus is on pt and family first, not money).
Hospice can take care of her in a nursing home - and a nursing home is supposed to allow any hospice agency to come and work with any resident who enrolls in that hospice.
Sometimes a facility will say they 'dont work with' that hospice and try to get you to enroll in the one or two that they have contract arrangements in place. That is 'not factual'.
You could contact the non profit hospice that would not take her in their inpatient unit. See if they have an outpatient team that visits SNFs.
I worked at a non profit hospice for 5 years, and we went to wherever the patient was. We had inpatient unit - same criteria for admission.
Your suspicion that Medicare dollars are the most important focus at the facility is accurate. Sadly, all of health care is a business, and insurance company 'guidelines' are very hard to bend...and nobody gives care unless they are sure it will be paid for.
Getting hospice involved will be support for you, as well as some help with your mother's care and treatments. Hospice enrollment can give a facility "permission' to let someone stay in bed instead of being propped up in a chair all day. Or have a meal in their room instead of a group dining room. Or have ice cream added to every meal tray. Instead to putting her through PT, she could have some time awake in the bed or up in a chair so you can visit and talk with her...or listen to her...
The whole Medicaid issue -nursing home SW is supposed to be able to help you apply....go to the website for your state, download the form, and get started. Get most of it filled out, copy everything you submit, and send it in via registered mail (so you know it is received). Or do it through their online portal, if you are good with computer and scanning in documentation. The date they receive the application is critical - they give you more time to get in missing information, but her coverage will be backdated to the date the application was received....and if the nursing home knows that you have applied, they can't kick her out for nonpayment.
Just do what you can, and know it will be enough. Your mom made choices that got her to this place. It is so hard to love someone when the consequences of their poor choices hit...and we struggle and suffer harder than they are.
Thinking of you and your mom.
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EndOfMyRope88 Jan 2022
Hi Clairesmum, I completely agree with you about hospice. There are a few barriers, however.

First, she lives in a 1-bedroom apartment and has no family other than me, and I have to work full-time without paid leave (my mother is practically indigent and could not pay me, and I have to pay the bills somehow). There is no one to care for her 24/7 with home hospice care and I am not strong enough to transfer her or carry her.

Second, she cannot enter a long-term care facility yet because she does not have the assets, nor is she on Medicaid (she only brings in a few thousand dollars more than the Medicaid threshold each year). I am getting in touch with an attorney to get her on a Medicaid spend-down program so that I can put her in long-term care. Unfortunately, that's going to take more time - I couldn't get the money to get an attorney until recently.

Third, her death does not appear to be imminent, so she cannot go to an institutional or residential hospice (at least she can't go to the residential large non-profit hospice that is well-respected and well-run in our community). She doesn't have 10-15 thousand dollars in cash to pay for room and board at other hospices in our community, either.

My grandfather was actually kicked out of an institutional hospice because he lived too long (2 weeks), then died in an ambulance en route to another hospice. Brutal.

Hospice is absolutely wonderful, but there are many barriers to getting hospice care in the US. Are you in the UK? I ask because you use the word "mum". I wish I lived in the UK; I have several friends there. Be well, take care.
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One of my friends' wives had been declining with multiple conditions including COPD. Her latest round of procedures, which they fought for, led to the hospital discharging her to a subacute rehab. Within a few days, he'd concluded that they were not doing their jobs there and so he'd have to, and he brought her home. She died about a month later.
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I think what you may want to look into is Hospice for your Mom. Alva is a nurse and knows more than I do, but Rehab, with all Moms problems, is not where your Mom needs to be. They are not skilled nursing and IMO, that is what your Mom needs. With skilled nursing she will get the therapy she needs, too.

The cost of the facility falls onto the person needing care but Hospice care is provided by Medicare. They will make sure that Mom is comfortable in her time here. You can have her sent home but, someone will need to be with her 24/7. Depends on the Hospice and the staff available, but some give you an aide for bathing 3x a week and maybe xtra time to run out to the store. One OP said she got one for much longer. But you can always hire someone. You can place her in LTC with Hospice but again, Medicare does not pay for the facility.

This is a decision you and Mom need to make together.
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sp19690 Jan 2022
What a shame this woman was put through the trauma of a second brain surgery only to possibly die anyway and wind up in hospice. Not exactly a good outcome for her or her daughter.
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I just read your profile page. I'm sorry your mother is dying of glioblastoma, I lost my brother to that cancer. I think all of your choices are bad choices - I assume you went ahead with the surgery in the hope it would buy more time but are now discovering that more time doesn't equate to quality of life.
The bitter reality is that most people diagnosed with glioblastoma do not survive beyond one year, I'm not saying that you should give up but you need to accept that reality and sit with her to decide how she wants her final days to play out. I urge you to consider hospice, which is not giving up but is a program designed to help those with terminal illness live their best life possible for the time they are given.
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EndOfMyRope88 Jan 2022
I agree with you that the surgery was a terrible idea. I did not want her to go through with it and tried to talk to her about hospice, but she refused to have that conversation. She refused to have that conversation with her palliative care doctor as well. Was just too afraid to die. I only have medical power of attorney (MPOA), not guardianship, so I couldn't step in and stop it. Watching this unfold has been incredibly traumatic.

I would love to start her on hospice and called the nearest nonprofit hospice in my area, but for my mom to be on home hospice, she would need a full-time caregiver and I am not able to provide that level of care if she is bedridden and unable to use the toilet for months on end.

For her to be in an institutional hospice, she would have to be actively dying, which is not happening right now. It is bad.
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I have a friend (mid-60s, like me) who recently took a horrendous fall; had a brain bleed which worsened, necessitating a craniotomy.

Although she desperately wanted to go to Acute Rehab (Rusk at NYU), she was denied because she was too weak from the surgery. So she went to a sub-optimal, sub-acute place and worked like a demon for 10 days, cursing out every therapist she worked with, according to her daughter. But she worked. Hard.

At the end of ten days, she went back to the neurosurgeon who declared her ready for acute rehab and she was transferred to Rusk, where she stayed (and continued to rehab like a demon) for another few weeks and then came home with home therapy.

So, sub-acute is not always bad, but mom needs to work at it. Mom, not YOU needs to be motivated.

I am reading in your profile that mom has a life-limiting brain tumor.

What does MOM want?
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EndOfMyRope88 Jan 2022
Hi Barb, thanks for your answer. My mother is severely depressed, confused, and is experiencing a form of dementia from her illness, her medications, and the after-effects of being in the ICU. She wants it all to go away, but we know that life doesn't work like that.

I went into the facility 3 times last week and did gentle mobility exercises and range of motion exercises with her while she was in her bed. She was so out of it one day (she was on Klonopin for her anxiety) that I moved her arms and legs for her.

I'm happy for your friend - that is really encouraging to hear. I just feel like my mother is in a vicious cycle - she doesn't move and gets weaker, more depressed, and sicker. Failure begets failure and success begets success. I hope we can have some success because I do not want her to be in so much pain. I know that she is dying, but I want her to have some quality of life.

It's hard. I feel so powerless.
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PT is limited to five days because even therapists in facilities need time off.

Home therapy may be a different number of sessions. Look it up on Medicare's website. Or ask the doc's office. Do not remove her AMA. You will have a very hard time getting her in anywhere again.

Have patience, work with the staff where she is now. Shop for a more permanent solution as it sounds like you may need one. That being the case, DO NOT MOVE HER.
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PeggySue2020 Jan 2022
It wasn't a duplicate question. This post asked about OT/PT services in a facility. The other was about how she might acquire those at home.
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Two hours of PT is more like a professional athlete rehabbing from an injury. My mother had 30 minutes, and it wiped her out.
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Two hours of physical therapy would be too much for her to do. Call and ask Medicare as Barb suggested.
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2 hours of PT? Per day?

I see my PT 2xweek for 30 minutes each session and I'm sore as hell afterwards. And I'm healthy.

The social worker might have said c that your mom would get a total of 2 hours of therapy a day-- speech, Ot, Cognitive and PT.

You can call Medicare 1-800-633-4227 and ask what the standard for subacute rehab is. But 30 minutes per day sounds right.
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EndOfMyRope88 Jan 2022
2 hours of PT was a stretch. Occupational therapy is definitely needed; I don't know if they are bundling that in the 30 minutes of PT she's getting each day. I'll have to ask the social worker, who has been very hard to get in touch with. I'm learning this as I go - I get different answers from every social worker I speak to (hospital, rehab facility, hospice, palliative care, etc.). It's frustrating.
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