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.
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.
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.
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?
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.
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.
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.
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.
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.
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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