So she's in her second week of rehab. Every time I visit she just wants to "lie down". Plus she has a completely unbelievable fear of falling, I mean she's comfortably in bed and gripping the railings like she's on a boat being tossed at sea. She says there's no vertigo or dizziness there either. Today I merely tried to raise the bed a little so she could eat properly and see me and she starts carrying on like it's the worst torture imaginable.
So I was talking to the therapist and she tells me that on Friday they had to change the mattress so there was no other option but to get her in the wheelchair for a while. This has been a goal since day one. She tells me that after a brief struggle she did get in the chair and remained there for a few hours with no issues. I was astonished as Mom never mentioned it.
So today I'm there and we figure let's go for it again. They sit her up and immediately the death grip begins. This little old lady who's always too weak to move was fighting off three people and resisting with everything she had. There was no risk whatsoever of falling. Eventually the therapist had to give up and i could see the annoyance there, as I felt it too.
I'm wondering if maybe it's me. When I'm there she never stops with the hapless routine and the fear of falling, then I hear that while I wasn't she's actually doing something. Perhaps i should skip a few days and see if it helps?
And it's good she's complaining! If the soup is too hot, she must have an appetite and is hungry. If she doesn't like the cable line up (and who does?) she must be interested in watching tv.
I'm so glad this journey is back on track and headed in the right direction.
And thanks for keeping us updated.
I'm wondering if there is anyway that the Hospital/rehab could be convinced to reset the clock given the errors. Couldn't hurt to ask.
This time around they'll be able to focus on treating her actual maladies instead of guessing and I think there's at least a fighting chance that eventually she'll be able to return home. I'm not sweating the money end so much this time around, they're just going to have to accept a payment plan as she simply doesn't have a huge lump sum to plop down right now. She has around 25-30 days of those $157 copays to cover which isn't insurmountable or anything. She probably needs a few days of post-op recovery before she can do any real PT and again, this time around it's not going to be a rush job. Still waiting for her biopsy results although her specialist was guardedly optimistic re: that.
Today I was informed that she's been accepted back into rehab (the same one) which means I'll be discussing money again with these people. It has to go differently this time around, though, that's for sure. I also heard from another Medicaid "pre-screener" today for some reason and wow, what a grim robot she was. Apparently it's all done by mail here. You apply and a few months later you either get a card or a rejection letter. First she told me that Mom probably "gets too much" to be eligible and then she asked me if her house was "listed yet". I mean they don't even try to pretend they're not coming for everything. When I asked re: exceptions she pretty much sneered at me before explaining my options there. Not pleasant.
But then again, nothing would really surprise me at this point. I could very well get a call tomorrow morning (sixty seconds into my wake-up shower, no doubt) informing me that she's waiting at the curb in the rain for me to pick her up and I'd better make the Medicaid appointment immediately but the office is closed until Thursday. This hospital SW (#6) keeps telling me she'll call and set me up with an appointment, then the next day she acts like the day before never happened. So I'm assuming I'll just end up doing it myself and really it's just easier and less frustrating that way anyhow. IF she gave me the correct number this time, that is.
You have a lot to be proud of; were it not for your persistence, those fractures may never have been discovered.
I would double and triple check on any civil action to recover damages for your mom's medical treatment. I would confirm if recovering any money would disqualify her for Medicaid Or if she would have to spend it, before she would qualify. I don't know the answer, but I would confirm that recovering damages wouldn't hurt her in the Medicaid process. There is no guarantee of what amount she might get, but unless it's an awful lot, it might not be enough to pay for her care for that long, but just enough to mess up her qualification.
Glad the procedure went well and that she's in CCU where they monitor your every breath. Hold steady, this looks like it's starting to go well.
I think having the cardiologist involved may slow down the discharge drums....
Babalou: Yup, that's it. Also, we have a shared account so accessing it isn't a problem. She was "bilked" out of some money a few years back so at that point I began helping her out with that stuff. I also have a little money put aside that I can use if need be, not a lot but it's a start.
Social workers...(sigh). Today I heard from #6 (I number them now, it's easier that way) and she asked me if I've contacted "ABC" regarding a Medicaid appt. I said, uh, no, you gave me "XYZ's" number and told me to line up an appt. with her and all I get is a "this VM box is full" message. "No, I said ABC"..."no, you said XYZ, I wrote it all down" and etc. All I could do was laugh, it's so absurd sometimes.
With regard to payment, just remember that you are using mom's money for these expenses. I seem to recall you are not POA? So you are not signing anything with your own name.
It also must be very gratifying to see a smile on your mother's face and know that she's feeling better.
Babalou: Working on that right now. I'm supposed to meet with the Medicaid person late this week (apparently she only sees applicants on Thurs. and Fridays). They're already pushing re: discharge, however I'm "tuning it out" until I see how her procedure goes first. She might return to the rehab center (under a different protocol, obviously), however the copay is an issue right now so I have to work out some sort of payment plan there (again). As hesitant as I was to bring her home before, I'm definitely not going to mess around with a spinal injury, as I already feel terrible enough about how her prior rehab stint played out.
I can't speak intelligently to the specific procedures or details, but I recall reading about various new techniques, including one using a type of medical cement to encase and stabilize the fractures. Again, I didn't pay much attention to the details as the whole issue unsettled me, so don't rely on my "interpretation", but do check on the availability of alternate options.
Make sure that the discharge folks are working on identifying a facility that will take mom as "Medicaid Pending".
Visiting later, then back to the Medicaid paper chase. Almost there, but still need a few documents. I really want to resolve that too so I can maybe get back to some semblance of a "normal" life again. The toughest jobs I've ever held were cakewalks next to this, I can tell you that. Thanks to all for the well-wishes!!!
It's normal I think to be suspicious, and dare I say, frustrated? I'm guessing that probably most of those here have gone through the intense, or rather "acute" episodes inbetween more calm and less traumatic periods.
It is and perhaps should be a learning experience, which you can leverage later to act as a guideline if other unusual events occur.
I wouldn't necessarily suggest that your concern is "natural cynicism", but if you think it is, ask yourself (at some calm moment like a Sunday morning) how it can work FOR you, by thinking like the medical people do, putting yourself in their place, and trying to envision handling many patients a day with multiple problems. But more importantly, how can you make it work for your mother?
But it is wonderful to read that your mother and you both had a better day and that the steroids are helping alleviate the pain - WONDERFUL!! - Going forward now, not quite full speed ahead but pointed in the right direction!
And do spend today working or just "putzing" around the house and relaxing, preparing for a possibly challenging but also rewarding week as your mother recovers and returns to her previous levels of stability.
If it is blood at the fracture site, maybe that will resolve with the steroid tx. or on it's own. Have a better night.
On a more positive note, the treatment Mom has received so far (a steroid treatment to reduce swelling in the affected area) seems to have done a bit of good as she was able to move her legs upon request today for the first time in at least three-plus weeks. Not a lot of movement, but movement nonetheless. She was a bit sharper than usual today as well, which was nice to see too. So far I'm pleased with her current doctors and her overall care, although I still feel so bad about all the time that was wasted prior to this. She still has further tests and consultation scheduled but right now any progress at all is a positive IMO. The best days are the ones with hope as opposed to the endless drudgery, bad news and constant mazes of red tape. While it was a small thing and not a reason for celebration or anything, it was really heartening to see. That lady still has some fight in her, it made my whole day!
What a long, long week. Visiting tomorrow early in the day then concentrating on completing household tasks to free up time during the week, time I'll undoubtedly need. A normal day at home doing normal everyday things will do me some good IMO. The more stressed I get, the more angry I get and before you know it I'm griping about everything. I will most definitely keep you awesome people posted, thanks to everyone following my lengthy thread, you've all been a real "port in a storm" through these trying days!
Many patients don't want to know the details of their illnesses, nor do their families. They just want to feel better. Not all patients and/or their families are willing to be diligent and/or do research to communicate on the medical level with the physician team.
It does take awhile for them to realize that you want to be informed of major issues, plans, etc. For the last several years, doctors turn directly to me to speak of Dad's medical issues, but I've also done my homework so I can communicate as much as possible on their level.
I think in my case working for attorneys predisposed me to be almost obsessive about gathering data, and it worked out to my benefit even though I can look back at some notes and not be able to make sense of what I wrote at the time.
Sometimes a way to establish a higher level of communication is to speak in medical terms. Medical people don't know immediately what level of medical knowledge you have or how much you're involved with your mother's care.
But it can quickly be established if you ask questions to get more details on everything, and if you take copious notes, do your research and then follow up.
And keep a notebook with you and do take those copious notes.
That was one reason why I gravitated out of any kind of law that dealt directly with injured people. They don't understand the legal issues, nor are they willing to learn. They wanted to talk about their pain, their discomfort, their anger. Sure, they're legitimate concerns. But I needed to know specific details about their accident - the issues that address liability. Attorneys can have the same problems with clients.
As to the team of doctors, don't be intimidated; generally they're residents. It's part of making rounds and it's not rude. It's one of the ways they learn to interact with patients from experienced doctors. I always saw it as a means to help them help me by addressing medical issues on as much of a level as possible as they did.
Why would you feel intimidated, tense and/or rudeness? They're not there to interrogate you but rather to get updates so see this as an opportunity to further your care of your mother by speaking with more people who are in a position to help.
Remember, they don't know you're driving in heavy traffic; if you don't want calls, turn your cell phone off. And actually for safety purposes you shouldn't be on your phone while driving anyway.
An aside: you know what I hate the most? When you're at a hospital and the doctor finally comes in to speak to you and he/she arrives with an entire team of other doctors who just stand there in the background. It's intimidating and it causes unneeded tension, not to mention it's rude IMO.
And yet another social worker to deal with today, as the Medicaid screener person finally called me back at 11:45am on a Saturday, while I was driving in heavy traffic, natch. Do they have a knack for terrible timing or what? Must be a qualification for the job.
So I need to retract any statements I made earlier about recommending estate planning and elder law attorneys. The issue has shifted now if you're considering actionable events.
As to the social workers, I'd say they're not "all on the same page" to rely on an overworked expression.
I write this not in defense of anyone, but just to clarify the issues surrounding potential negligence.
1. I don't recall the original reason for the hospitalization, but if one was for anemia, I'm not sure it would have been medically justified to check for spinal fractures. In other words, Medicare likely wouldn't have reimbursed for the x-ray or and MRI to check for spinal fractures if nothing was mentioned or discussed of possible leg or spinal pain during that hospitalization.
2. Same issue would apply to the rehab facility. Absent indication of a spinal or fracture issue, there might not have been reason (i.e., medical reimbursement) to justify x-rays.
However, I won't deny that light bulbs and big question marks should have been raised when your mother expressed so much resistance to therapy.
A possible suggestion could have been to take her to one of the hospitals for out-patient x-rays, or to take her to an orthopedic physician for examination.
CM offers some good suggestions into this process. Unfortunately, hindsight is better than foresight.