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Dad was in the hospital for 2 weeks. In that 2 week period, he was diagnosed with Cardiac Amyloidosis, CHF,Cardiac Cirrhosis, and they found a large mass in his liver suggestive of Hepatocellular Carcinoma. Im heartbroken. While in hospital, he was diagnosed with CDiff too. He began to hallucinate and became very confused.
He went to SNF for therapy. SNF was going to discharge this past Tues. There is no way my dad could have left! I filed a Redetermination Appeal, it was denied. I then filed a Reconsideration Appeal, I was granted a 14 day extension to gather my documents.
I got a copy of the therapist notes,etc. He has made some progress, but the SNF said he won't improve and he has plateaud! I educated myself on the Jimmo Settlement! I have also spoken to a LTC Ombudsman.
I am so distraught with everything that has happened this past month,I can't even think straight.
My poor dad has very poor hearing even with his hearing aides. His confusion has worsened, which makes it so very hard for him to understand what the therapist are wanting.The social worker told me that my dad can only ride the stationary bike for 12 minutes then he's tired. Of course he is! Are they not taking into consideration of his diagnosis?
I have to write a Reconsideration letter,explaining why I think he should have skilled care. One of my arguments are,he had to quarantine in his room for 14 days since he came from hospital. He didn't have full access to the therapy equipment until Day 15! They wanted to discharge on Day 20!
If any of you can offer me any wisdom,I would be so grateful. I am an only child and I want to do everything I can possibly do for my dad. He deserves that!
Sorry for going on and on...im just so worried.
~Kim
P.S. When my dad is a little stronger, I will be bringing him home with 24/7 care.

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You indicate your father has a mass on his liver that may be cancer. However, a biopsy was not suggested as far as I can understand. That may be because the prognosis would be so dire if he did have liver cancer that there would be no point in operating. He probably could not survive an operation, and if he did, he probably still would have liver cancer, since you can't remove the entire liver unless you're having a transplant. You may want to ask. Might it not be better to let his illnesses run their course than to subject him to therapy and treatment that may prolong his life but worsen its quality and have the same eventual result? Of course you do not want to lose him, but trying to prolong his life may hurt both of you. Many hugs!
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CrazyCatLady21 May 2, 2021
The Drs have talked about biopsy. But the risk due to bleeding is very high. He has chronic afib,they say it could spike that even more. At this point,with his Cardiac status and Cardiac Cirrhosis he isn't a candidate for Chemo or surgery. One of the treatments that may slow the Cardiac Amyloidosis is chemo,he isn't a candidate for that either. There is 1 drug that he "may" be a candidate for slowing the Amyloidosis, but it is 18,000.00 a month for 10 capsules! Makes me sick.
At this point,in my opinion,quality over quantity.
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I’m sorry your dad has such an overwhelming set of conditions. Each time my dad was hospitalized, he lost ground, and rehab only brought him to a new and lesser normal. Lying in a hospital bed is an enemy of the elderly with chronic health issues. Movement is sidelined and often never returns in the same way. My dad also made no progress in his last rehab, decided for himself to come home on hospice care, and died a bit over a month later. His medical conditions were overtaking the joy derived from life. This could be a possibility for your dad as well. It’s hard to work at, and want to be here in the face of so much bad health. I wish you both peace in navigating this
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CrazyCatLady21 May 2, 2021
Thank you for your kind words. I am still trying to grasp all of this.
My dad had a Dr appt with his PCP Feb 16th, including labs. All was good with the exception of 1 lab.They were having him come back in a month to recheck(it wasn't a super high level), but it had never been elevated before. Needless to say,he was admitted almost a month later. That's when we found all of this out over a 2 week period. My heart is broken to pieces.
I am so afraid.
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You are just discovering Medicare rules. After a certain fixed amount of time, there is not much to rehab. Next is custodial care that he or Medicaid pays for. I suggest you find the inexpensive book Medicare for Dummies to understand Medicare.
As an aside, when someone has chronic conditions and a hospitalization, there is a downhill slide. He may never get backt o 100%
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CrazyCatLady21 May 2, 2021
We have been told he won't ever be back to his prehospitalized state. We were told that when he just had the CHF diagnosis. Even before the rest.
I may have to check that book out.
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Thanks Igloo.

I don't think you understand what rehab is. The therapy is to help the patient in trying to get back to normal to be able to be sent home. Its not a cure. There comes a time when no amount of therapy is going to make a difference or make him stronger. Your Dad has a lot of health problems that contribute to him being able to walk or not. If he has plateaued there is no more they can do. His CHF alone will keep him from having the strength to do therapy. My Dad was given a stress test and they had to stop it. He just had no strength.

So sorry you are going thru this.
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If he’s getting a hospice consult, that’s going to be slightly different than getting a needs assessment. If u are really really really considering having him leave the NH and moving into your home, I’d try to get both done. Hospice is an awesome Medicare benefit, but it is limited in scope and in actual realtime. The needs assessment can shed some insight into what all will be needed all the rest of the time. If he’s 24/7 oversight and on black box warnings drugs, he’ll need a big care team coming into your home & that understands & will deal with his meds appropriately. If the aides are ones you are hiring on your own, please check your insurance to see that you have coverage (you may need a rider) AND realize they are considered household employees by IRS so you or dad are responsible for doing FICA & all paperwork on taxes. If you use an agency, they deal with this aspect.

Hospice can be done either in home or can be a part of his being in a facility. But hospice alone will never provide all the care needed. Now hospice will provide some equipment.... like a special bed with pressure sensitive mattress, a geri chair, a wheeled geri bathing chair if you have an open floor shower area, order specific nutritional stuff if his diet requires that.

My mom was in a NH, fell (pulling her wheelchair on her way to arts & crafts no less), shattered a hip, became bedfast and went onto hospice, so the regular care team at the NH still did their stuff AND hospice came in 2 - 3 x a week for 3-4 hrs and between reg NH staff & hospice were moms bathing team, it was amazing to watch, meanwhile NH staff stripped the bed & put on new linens, hospice got her dried, moisturized & into new clothes and then helped with a meal or other comfort care. It was 3-4 pros doing stuff. My mom was tiny petite so never got pressure ulcers & pretty compliant & cognitive and even with all that it really was a 2 person job to efficiently get things bigger things done for her the 18 l...o...n...g months she was on hospice before she finally died. If your dads a big guy and wants to get up and do stuff but really is not ambulatory or cognitive enough, it’s going to be challenging to care for him on your own. I’d suggest you ask what his medications will possibly do for his cognitive ability. If he’s on fentanyl, pill or lollipops, clearly ask how the hospice deals with giving & storing his meds.

Sometimes, although rare, if they are very very ill and eligible for hospice, they can go into an in-unit hospice facility. Sometimes it’s it’s own wing in a hospital; sometimes it’s a separate freestanding building adjacent to a hospital (Kindred beds often falls into this category). MediCARE will cover it as extension of hospitalization benefit combined with hospice benefit. My MIL got pneumonia at her NH, went to ER, got hospitalized, became severely septic. She moved from the hospital into a free standing hospice facility; she had cascading organ failure atop sepsis and died abt 3 weeks after the move. MediCARE covered it. It was not the usual 2-3 times a week hospice benefit.
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CrazyCatLady21 May 2, 2021
I am meeting with Hospice nurse because I do have alit of questions. My mom died 35 years ago,I was 15. I don't remember much of that. I know they were super.
I am just scared
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CrazyCatLady21

I just wanted to send you a great BIG hug. I feel your pain o, "very sad sad situations."
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CrazyCatLady21 May 2, 2021
Aww thank you! I can use them💗
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I think you’ll find that Jimmo is not applicable to your dads situation.

For those not familiar with Jimmo, it’s a 2013 settlement related to a class action Jimmo V. Sebelius. The Sebelius was Katherine Sebilius who was head of DHHS from 2009-2014, so she was the head of all things MediCARE. The plaintiff, Jimmo, was diabetic, legally blind, an amputee & on MediCARE. She had been receiving in-home health care & out patient therapy (aka OPT so skilled care done by PT, OT, ST) paid by Medicare. MediCARE had covered in home & OPT for her but stopped as MediCARE applied “improvement standard” for determining as to whether Medicare paid & Jimmo did not meet “improvement”. Jimmo was the lead plaintiff but the others were mainly MS & ALS. I’m familiar with Jimmo as I had a cousin who had secondary polio and he was on in-home & OPT, & the agency he used sent out notifications as to Jimmo and what that would mean for their clients.

Jimmo settlement requires Medicare to look at certain standards beyond “improvement” alone for claim determination; & those who can benefit for skilled services for maintenance or to prevent or slow decline or deterioration, then MediCARE beneficiaries are entitled to coverage.

CrazyCat, the issue, imho, will be that for your dad there is no “maintenance” for him to stay at. Your dad has had recent significant cardiac and cancer dx’s, continuing rehab at the SNF for him won’t change his prognosis or slow decline of his diagnosis. That’s why Medicare has declined coverage. It’s not a Jimmo thing.

Jimmo seems to be best used for those who
1. have a preexisting condition like MS, ALS, Parkinson’s, paralysis (like my cousin w Polio) as they need “maintenance” or other therapy to “slow or prevent decline”
AND
2. are getting skilled services in their home
For residents in a facility, they can use Jimmo to have Medicare pay for PTs to do “gait training” or for OTs to do hand movement therapy so they do exercises to work on keeping their ability to clench flatware or hold things so it slows their decline. My mom had gait training 2-3 times a week at her NH till she became bedfast. It’s pretty common for NH residents & it’s all paid by Medicare as it’s covered “maintenance” as part of Jimmo settlement; it’s not Medicare rehab coverage per se but Medicare coverage “to prevent further deterioration or preserve current capabilities”. To me, the issue will be for your dad is he likely does not have “current capabilities” to preserve and those PT notes show that is the case and why he had been denied.
He might be able to get a Medicare clock reset for day 1 moved to day 15 as no services provided during quarantine, but unless he’s meeting a need for rehab, he’s going to be discharged from rehab. Usually what happens is that they transition from being a rehab patient on Medicare to becoming a long term care resident on private pay, Medicaid or LTC insurance. That is likely what the facility will recommend.... unless family has told them they are moving their elder home no matter what.

This is all quite overwhelming to deal with. If you are set on having him move into your home, I’d suggest that you have a needs assessment done for him right now ASAP while he is still in a facility. It will tell you just how big of a care team you realistically will need. If it is 24/7 oversight, that means 3 sets of caregivers. You cannot do it solo. You may want to have him evaluated for hospice as that will bring in a care provider for a few hours maybe 2 or 3 times a week who will help with his medication management, vitals and bathing; hospice is a Medicare benefit.
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CrazyCatLady21 May 2, 2021
Thank you for answering. In the therapy notes,states my dads improvement. If he can maintain or slow any further deterioration. Maybe I'm grasping at straws. He is all I have.
I have a meeting with Hospice in the morning to discuss possible care plan. I have alot of questions. There are only 2 other "Skilled" facilities in my area and I wouldn't have my dad admitted to either one. Very sad sad situations. I have a few aides lined up in the event he comes home.
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