little turtle (original poster member #15584) posted at 2:30 PM on Tuesday, September 24th, 2024
Hi. I've been going back and forth on posting for the past couple of months. Just when I think things are improving and decide not to post.... nope. Mostly looking for advice and support. There's a lot going on.
My mil (upper 60s) had back surgery August 6. Spinal fusion L3-L5 due to sciatica pain in her right leg. She tried shots and PT and neither helped. The severe pain began in May. She couldn't drive or work her regular duties. She did some sit down work when she was able to drive to work. On August 10, mil had a 2nd back surgery. There was a screw touching a nerve which was causing pain in the left leg and fluid build up on the spine. She was discharged on August 12. She fell getting to bed that night even with my bil there helping her. My bil wasn't able to get her up. Called an ambulance and they took her to ER. She also had complaints of nausea and some dizziness. Diagnosed with UTI. August 14 she had a 3rd back surgery due to a fractured S1 and fluid build up on the spine. No one knows how this happened. Due to the fall? During a prior surgery? She received a blood transfusion on August 16 due to being anemic. On August 21, she was transferred to in hospital rehab to start daily sessions of PT and OT. She told us she was taking various amounts of steps each day. We later learned that these steps were taken not just with a walker, but with 2 people assist (one on each under arm). On August 27, she had her 4th spinal surgery due to spinal fluid on the spine... during this entire time, mil was experiencing hand tremors and extreme anxiety. She has since started talking with a psychiatrist and has started taking medication for anxiety. She was able to lower her pain medications and is off muscle relaxers. She is diabetic and has stage 4 chronic kidney disease. She also does not have a spleen.
Due to all of the setbacks and complications, in hospital rehab was not a success. She is not able to get herself out of bed. Which means she cannot take care of her toileting needs and needs 2 people with her around the clock if standing and 1 if we're going to only use a wheelchair and a transfer board. Insurance denied moving to another rehab facility. She was to be discharged on September 11 to go home. The doctors ran more tests before her discharge date and found there is fluid build up on the spine again. For whatever reason the X-ray team wasn't able to do an alternate procedure to drain the fluid and the surgeon does not want to do a 5th spinal surgery. The doctors requested rehab again, after being moved out of the in hospital rehab unit and back to the orthopedic section. Insurance has denied rehab again and the family has submitted an appeal. We are now in the waiting process for the appeal. They have 25 days to respond. I get it - insurance doesn't want to pay for her to go to rehab and not get better (again). But also, she wasn't ready to receive the rehab services at the time she had them due to other medical issues. Her team is confident she can walk again with more rehab.
Anyone have any similar experiences? Any advice? We're pretty much wait and see at this point.
If she does get discharged to home, she will likely return to the hospital shortly after as we aren't able to keep her safe.
Sigh. There are other issues as well, but that's for another post. Thanks for reading. ♥
Failure is success if we learn from it.
tushnurse ( member #21101) posted at 3:33 PM on Tuesday, September 24th, 2024
So just a clarification insurance denied "inpatient rehab" (meaning done usually in an acute care facility like a hospital and needs to tolerate 3 hours of therapy a day or insurance denied skilled nursing which is in a skilled facility or long term care facility with PT/OT usually 5-6 days a week. She should be able to go to skilled care with therapies unless she has used her 100 days.
You guys can also express that you feel home is NOT a safe option and cannot afford 24/7 IN home care (this is an assumption but usually in home care which insurance does not pay for runs about $24-30/hour)
I'm sorry she is struggling so bad. Back surgeries are often not successful and lead to further decline and bedding for more surgery as the spine continues to deteriorate.
Me: FBSHim: FWSKids: 23 & 27 Married for 32 years now, was 16 at the time.D-Day Sept 26 2008R'd in about 2 years. Old Vet now.
little turtle (original poster member #15584) posted at 2:59 AM on Wednesday, September 25th, 2024
She had inpatient rehab at the hospital. 8/21 - 9/13. They denied rehab at a skilled nursing facility. She has not been there 100 days.
We visited today. She said she walked with her walker from one side of the room to the other. PT walked behind her with the wheelchair. Progress!
We did mention in the family appeal that it is not safe for her to go home and that we cannot afford home care. It's rough waiting in limbo-land, but at least she has care/services while we wait.
Failure is success if we learn from it.
EvenKeel ( member #24210) posted at 1:15 PM on Wednesday, September 25th, 2024
I am so sorry she is suffering so much!!!
My mom had multiple back surgeries within months as well. Some for actual back and some for the infection(s). I am sure they are keeping a close eye on that on your end but if anything is out of the ordinary; get it checked out. My mom ended up with an infection of not only her spine but brain. It was a horrible time.
Your post brings back so much of that time for me. It was exhausting. Like your situation; she would be released but not in a position to be alone and her husband has his own set of medical issues. So overwhelming for everyone.
It is frustrating the lack of resources to help and the cost of those that are available.
Fingers crossed you get good news from the appeal.
tushnurse ( member #21101) posted at 2:21 PM on Wednesday, September 25th, 2024
Insurance generally will only deny skilled rehab in a nursing home if patient is not willing to participate or if she has plateaued. If that isn't the case then you do have the right to appeal. I would also ask for the case manager or social worker to assist with this.
May need to send in updated PT/OT notes again and see if she is ready now. The other consideration is if she has a Medicare advantage plan she can switch plans if there is a 5 star rated plan available she can change to it outside of open enrollment.
Me: FBSHim: FWSKids: 23 & 27 Married for 32 years now, was 16 at the time.D-Day Sept 26 2008R'd in about 2 years. Old Vet now.
tushnurse ( member #21101) posted at 2:22 PM on Wednesday, September 25th, 2024
Insurance generally will only deny skilled rehab in a nursing home if patient is not willing to participate or if she has plateaued. If that isn't the case then you do have the right to appeal. I would also ask for the case manager or social worker to assist with this.
May need to send in updated PT/OT notes again and see if she is ready now. The other consideration is if she has a Medicare advantage plan she can switch plans if there is a 5 star rated plan available she can change to it outside of open enrollment.
Me: FBSHim: FWSKids: 23 & 27 Married for 32 years now, was 16 at the time.D-Day Sept 26 2008R'd in about 2 years. Old Vet now.
little turtle (original poster member #15584) posted at 1:35 PM on Friday, September 27th, 2024
We found out Wednesday night that insurance reversed their denial. She has been approved for 7 days at a skilled nursing facility!! Fingers crossed that she can re-gain her independence and start a new life.
EvenKeel - That sounds awful! It's such a hard place to be.
Tush - the medical care team was very supportive in helping us write a letter for a family appeal. We received case notes and words documenting progress that we included. She does not have Medicare Advantage. She is paying out of pocket through her work plan... that's another hurdle along the way. We will need to switch her to Medicare as primary and find a supplemental for the 20%. This will probably happen when her work insurance ends.
I wrote this yesterday and found the draft this morning... might as well update it!
MIL relocated to a rehab facility yesterday afternoon. She was/is concerned because they don't have a walker for her to use. The nurse said MIL would get one after her assessment. MIL texted my husband at 4am saying maybe he should bring her walker.... give the people a chance to do their job!! She seemed easily confused during our visit yesterday. Hopefully once she settles in, she'll be OK.
Failure is success if we learn from it.
tushnurse ( member #21101) posted at 11:45 PM on Friday, September 27th, 2024
Glad she is doing better. If she is 75 and not signed up for Medicare yet then I would urge you all to work with the social worker at the rehab on ext steps. She can either get Medicare and a second dark to cover the 20% Medicare doesn't and a part D plan for medications or Medicare advantage plan. Your state should have a state run program that will hp you look at options during open Enrollment which starts in 2 weeks. However if she has had a significant change, like no longer able to work she can enroll now. This will give her better options for rehab in the future.
Medicare advantage plans roll everything into one plan and offer other benefits like transportation to Dr visits, a card to pay for otc items and even some offer meals after a hospital stay.
There are drawbacks with advantage plans that like commercial insurance want to limit costs and will give you your dc date from rehab and deny acute rehab unless you have specific diagnoses. That's why you should work with yput states insurance planning g program they can compare options and give an idea of what would be better. Given her recent history it may be worth the higher cost traditional Medicare and secondary they are much looser with the purse strings when it comes to rehab and acute rehab and length of stay.
Me: FBSHim: FWSKids: 23 & 27 Married for 32 years now, was 16 at the time.D-Day Sept 26 2008R'd in about 2 years. Old Vet now.
little turtle (original poster member #15584) posted at 10:01 PM on Saturday, September 28th, 2024
Thanks, Tush. She does have Medicare, but it's secondary due to having work insurance. I assume once FMLA is done, she won't be eligible for work insurance through the group and will have to go on COBRA to keep it. Hopefully we can switch her to Medicare as primary and pick up a medigap supplemental policy either before her insurance ends or at the same time. Her sister said we can't switch yet since insurance is paying for rehab and she's afraid Medicare won't cover it... I don't see they they wouldn't, but not my fight to have. We are 6 weeks into FMLA.
She seemed to be alright yesterday. Unfortunately, the first night, she likely never asked for assistance to use the bathroom. She told me she will just pee in her brief since she didn't have a walker... well, she wet the bed and it took the aide hours to get fresh sheets. The manager asked mil to fill out a complaint form. She did get a walker on Friday and can use it in her room. PT/OT came together and helped her walk around the room. She didn't say much else. She was too busy to go to any of the scheduled activities.
Failure is success if we learn from it.