Mom's stubbornness is confounding to me...

I don't want to be an apologist for the medical profession - they do that perfectly well for themselves, ho ho ho - but reference the apparent indifference when we report new symptoms, there can be good reasons (besides expense and trouble) for their guarding against immediate action.

In a young fit patient, you notice a symptom, you immediately get busy with diagnostics and treatment. But if you do that when you're dealing with a 1920s or 1930s model you risk doing more harm than good, and an experienced doctor will proceed with caution. Many patients of this vintage will have complex co-morbidities - correct one thing and you knock four others out of kilter. It's rarely straightforward.

The terrible communication skills and communication processes that are, sadly, the norm don't help. But sometimes (I don't know if this is true for your mother, DMB) when what we see happening is Nix, what is actually happening is more like "we're thinking."

I for one would prefer it if they thought aloud, so that at least you can see their workings. How do you know if the young physician at the end of your mother's bed is standing and staring or standing and thinking if he doesn't speak? - and all the more so if instead he's sitting his office and going over her charts so that you can't even observe the process.

So ask lots of questions, but do be careful to make them constructive ones or you'll send them all into hiding. And bear in mind that they may not have any attractive or obvious treatment options. I know how frustrating and stressful it is, I really feel for you.

GA: One attorney already notified me that they don't take cases "like this one", which is probably understandable as I would imagine the specifics with the elderly are often difficult to pin down. I'm fairly certain that my mother's injury was present during both previous hospital stays and her stint in rehab, as her leg function decreased so sharply during that span. I suppose it's possible that the injury could have been exacerbated during PT as well and the PT would have been drastically different if it was being done for a spine injury as opposed to the anemia which was the "official" reason she was there. I also felt the rehab could have ordered tests sooner instead of waiting until I refused to accept her discharge before finally acting, but right now that's just my opinion I guess.

I'm going to give it a shot nevertheless, as I feel we were put through suffering that wasn't necessary, but whether there's a case there I don't know. I really should have studied harder and become some sort of super-lawyer/doctor :)

I've personally liked the social workers I've dealt with, they all seem like very nice people and I realize they're just doing their jobs as best as they know how. And I respect that. I also realize they do not work for me nor do I expect them to. They apparently mostly handle the insurance/money end of things and I do not doubt that it can be a tedious and frustrating job that might require a bit of emotional detachment. I mean hey, I'm human too and I understand they're doing their best.

That said, so far this week I've dealt with FOUR different social workers. The first one insisted I had to take Mom home at the end of the week which would have been a ruinous move at best. The second one was somberly discussing "discharge day" and what I'd do if the tests (which hadn't even been done at that point) came back negative (which they did not). Today the third one was pressing about nursing homes while I was anxiously waiting (for three hours) to speak to my mother's doctors about her care and prognosis. And the fourth one wants me to come in asap regarding the Medicaid process but doesn't have an appointment available until Thursday (and she's located at the opposite end of the county from Mom's current hospital). They could stand to be a bit more tactful is what I suppose I'm saying here (eyeroll). Perhaps I'm just seeing things through stress-colored lenses here but come on, let me digest breakfast before you force-feed me brunch, lunch and dinner, you know?

It is frustrating that all too often the opinions of those who know someone the best are totally discounted. I would think that if anyone should be the go between for staff and family it should be the social worker, but it seems like their job has turned into a 'point man' to move people through the system, and everybody else is busy turning a blind eye and hoping that somebody else will deal with any issues. Presumably they all went into their line of work in order to help people, what is it about the system that turns them all into institutionalized drones?
Dman, I'm glad your mom is finally being looked after and is comfortable, way to go advocating for her!

D, thank you for the update on your mom's condition. Sending healing thoughts her way.

Not to be redundant but much thanks to everyone who's replied, your kind words and thoughts are MUCH appreciated! Spoke to her doctors today. As far as the tumor goes they're not ruling anything out yet, more tests scheduled this weekend into Monday. They are bringing in a specialist on Monday for another opinion and to consult on a course of action. At the moment she is comfortable and stable, no sign of fever or anything like that, vitals are OK.

As far as the back injury is concerned, I have no idea as to the wheres and whens. She may have been injured for a while and finally broke down, I did not see her fall nor did she complain about or mention one. Not to say it didn't happen but again, I don't have any evidence that suggests it did.

The factor that peturbs me the most is that IMO her loss of leg function could have been addressed during one of her first two hospital stays and/or during her stint in rehab. I kept stressing that it was a recent development and again, IMO it wasn't addressed as a priority. Perhaps it could have been identified sooner, which would have saved her (and I) a lot of anguish. I think the folks at the rehab could have been more proactive about requesting further tests as it was an unusual and debilitating situation and IMO they focused a bit too much on the mental aspect of it before eliminating other possibilities. They didn't recommend these recent tests until after they decided to discharge her and I made a stink about it. Then the tests revealed the injury, an injury that could have been detected weeks ago which could have prevented three weeks of wasted time and misery. I can't say whether any of this was "negligent" in the legal sense of the word but it does bother me that they considered discharging her based on criteria that didn't make her well being a priority. If I had brought her home today who knows how much more damage might have been done?

Not going to get all "political" about it but it certainly is eye-opening when you see firsthand how everything constantly revolves around issues that do not place the patient's needs above everything else, that's for sure. Just today I explained to the social worker that yes, the insurance end of it is very important and can't be minimized but right now I am focused on alleviating Mom's pain and suffering and perhaps if she hadn't been given the "bum's rush" so quickly the first three times around we might not be in the position we are right now.

DMan, stand over them and make sure they're watching her closely for any hint of sepsis - Sendme is spot on, that could be an abscess they're looking at.

Dman, questions to ask an attorney:

1. Given the symptoms, presentation, etc., what SHOULD the hospital staff have done? Order an MRI? X-ray of the lumbar spine? Is there anything else that could have been done to diagnose the fractured vertebrae and tumor?

2. What then SHOULD have been the next course of action?

3. Is there any way to tell whether the fracture was in existence at either hospital stay? (i.e., it could have occurred at the rehab facility).

4. What is the standard of care in similar circumstances for your area?

An oncologist and a spinal doctor are checking her out asap. The doctor has already said that if any sort of surgery is needed they cannot do it there so I'm expecting her to be moved again, the question is where. Saw her a few hours ago and she seemed pretty relieved when I told her that no one is going to be expecting her to get up right now. Tomorrow is going to be a pretty busy day...

You need a second opinion, s.t.a.t.

The "tumor" in the same spot can be an infection from the crushed bone.

Just thinking on the purely medical aspect. Monitor her temperature. Broken bones can become infected.

Thanks so much all! I have a dentist appt. tomorrow I absolutely can't skip but as soon as that's over I have to work the phones, as I would ideally like to send her to a better hospital. While it's good to know what's going on, I feel terrible about wasting so much time and putting Mom through that misery. Right now my anger is focused on the doctors and staff who were so eager to send her packing during those first two hospital stays and I'm definitely going to seek out a good legal opinion on that matter as soon as I get a clearer picture of what's next for her health-wise. I want the focus now to be on reliving the pain and making her as comfortable as possible until I have a better picture of what to do next.

Spoke to a few people at the rehab while I was there today, didn't say a lot as I don't want to make any statements I could regret later. But I certainly wish they'd have been more aggressive re: further tests, it's sad that it took my complaints about discharging her for them to take action. It all feels like a big missed opportunity now in retrospect. It's unfortunate how so much of the medical business is centered around insurance issues and "assets", you know?

I'll certainly keep you posted, hopefully we can get her to a point where she's at least comfortable again. Thanks again all!

I'm so sorry to read this is the diagnosis. But it explains everything that has been happening. As far as guilt goes, just imagine if you WEREN'T there to act as her advocate and persist for her. She'd still be sitting there with people trying to get her to do things she simply can't do because of her back. As I've said numerous times, she's lucky to have you in her corner! Hugs to you...

It appears that the PT were not qualified to give PT to your Mom, as evidenced by the fact that they did not know when not to treat.
You have been a real trooper, dmanbro.
Trust yourself, and find better care for Mom, she is immediately transferred to Inpatient Hospital, acute care, right. Hopeful that you are aggressive enough to get her admitted to a better hospital. Have you explored the larger teaching
hospitals? Would it help to call Medicare and ask to be referred to a better place?
Be brave, be proactive, do not doubt that this experience has been malpractice on the part of rehab and the treating PT's. So sorry that this diagnosis is so distressing. You are not medical personnel so there is no way you would have known. You tried your best.

I'm sorry to learn of this diagnosis, but am glad that at last there's an answer to the inexplicable mystery of her pain and discomfort.

You might want to consider getting a second opinion on treatment and/or surgery from a spinal specialist at one of the big, well respected hospitals.

Sometimes I read the publications the local big hospital chains publish; there are recently developed techniques for dealing with spinal issues that might be available.

Don't feel badly about not knowing - it can happen to anyone. It happened to us, but like you, we pressed for answers and got them. Just be thankful that you had the foresight and perseverance to force the issue and find out what's really going on.

Mid-course correction time now - move forward and don't look back.

I feel absolutely terrible about it, of course. It probably explains her mental state as well. Mom is a stalwart person who was raised to not "complain" and she obviously has quite a tolerance for pain as well. Now we have some difficult choices ahead, as I'm not sure if she can really handle spinal surgery. However if it can help her live out her life as pain-free as possible, maybe.

And not even two hours after getting this news ANOTHER social worker is in my ear re: Medicaid and LT care. Plus I had to visit the rehab to find her stuff (they misplaced it but I found it) and resolve a billing issue. I'll keep you all posted, thanks for the well wishes!

Oh, my goodness. Good to know what's wrong but such sad news.

About the guilt. I know. Tried to get my mom to do PT on a broken hip for a week before the PT said "we need a new xray". You're not a doctor and you don't have xray vision. And folks with dementia can't localize pain (at least my mom can't ). Not your fault.

Well, today I got a diagnosis: the MRI revealed that Mom has a fractured lumbar vertebrae (his exact words..."crushed") and a tumor in the same spot. Obviously this is highly distressing, as no one knew that this was the source of her pain, as she was always very non-specific (not blaming her of course). Of course now I'm upset about trying to help her do PT as well as the fact that up until today no one caught this. The prognosis as far as her ever walking again is very poor. Right now I'm waiting to hear from the various specialists who are now working on her case. I'm also going to discuss this case with an attorney as IMO my concerns about her loss of leg function were largely ignored during her first two hospital stays.

Yes, I told them today that she needs a neurologist and a real psych evaluation too, so let's stop worrying about "discharge day" until these necessary steps are taken. Decline is obviously expected, complete sudden collapses in the span of seven weeks are not. I'm not even going to pretend what's happening here but I'm sure it isn't in the boundaries of "normal". She is clearly in pain, she is clearly not right mentally. I don't know why but until I get some semblance of an answer I'm going to keep badgering everyone involved.

Maybe because it's being funded by Medicare it's different, sorry for the confusion. My mom developed compression fractures after her last hospitalization; I think they may have occurred while she was being moved or transported. They've been treated symptomatically with Lidocaine patches. My mom is 92 and is quite frail, so no one was talking about immobilizing her or "healing " them. They just treated the pain.

Something to think about. Ask for a psychiatric consult while she's there if they haven't ordered one already. Insist. Jump up and down. The behavioral stuff that you described you should show to her doctors so they get a sense of what her mental state has been like.

And yes, you have to repeat this story to EVERYONE! Oy vey, I remember the feeling.

Babalou: Thanks! The SW at the hospital claims otherwise, according to her Medicare is paying the hospital while she's there, not the rehab, as that would be double-dipping. I'm talking about the MC copay fee here, as she's in the days 21-60 period. I still need to hash this all out with the hospital and the rehab but right now I told her (SW) I have no other recourse but to refuse to take her home until someone finds out what on earth is wrong with her. If they can ID and treat her pain issues so she's movable, I can care for her but until then I just don't think it's possible. And if she does indeed have a spinal issue I probably SHOULDN'T be moving her, you know?

One thing that's REALLY annoying is how I have to run down Mom's recent medical adventures over and over again, even thought this hospital is part of the same organization as the one she visited in June and July! Don't they write this stuff down?

Oh and good for you for standing up to SW! Bully for you!

D, hate to tell you thid, but even though mom's not in the bed, she's paying for it. If you are confident that their census is low enough that she'd be able to get another bed there, then tell them to release the bed. Or, if you never want to back there again. But if they are holding the bed for her, it's as though she's in it. At least that's how it works in Connecticut, where my mom is.

Update time: last night I heard from the doctor who informed me he's working under the assumption that Mom may have a compression fracture in her spine. They're doing tests today, so knowing how this goes I'm sure I'll hear back from the doctor sometime tomorrow, most likely while I'm in the shower or driving back and forth, probably during heavy traffic and/or a violent summer storm.

Spoke to the latest social worker today, she's nice and all but she's ALREADY banging the "if we don't find anything we have to discharge her" drum. I (tactfully and politely) informed her uh-uh, no, Mom isn't coming home until I have an answer of some kind...period. Not being able to move your legs, being bent over in an "L" shape and crying out in panicky pain every time a person sits up is not "part of the normal aging process". I want a diagnosis, a pain management plan, a long-term rehab/care plan, a plan period aside from "oh well, bring her home and figure it out".

Then there's her rehab center. Today THAT social worker was supposed to call me and let me know regarding the hospital bed they're sending just in case Mom does end up home anytime soon. I waited all day, tried him in the afternoon, left a VM and nada. It's supposed to be delivered tomorrow "between 9-5" aka cable company hours. Aside from the, she's paid through the seventh and she isn't there today and probably won't be tomorrow and possibly Friday, so they either owe her cash or days and I suspect they won't want to part with the cash.

Gotcha. Look, she's in a hospital so at least in theory, they have the tools to figure out what's wrong. I'd get some sleep if I were you. The morning brings more wisdom than the evening. Good thoughts coming your and your mom's way.

Babalou: I used to think it'd help for me to be there but lately it doesn't seem to make a difference. Whatever the problem is, it makes literally EVERYTHING impossible. I've told them all, do what you gotta do here. IMO she'll need to be sedated to get these tests done, if that's even possible. She resists EVERY attempt to move her, the doctor I just spoke to asked me why she won't let go of the railing and I said "wish I knew".

"If she's as unconnected"

Oh man! This is the point where I tell them (and I've done this) " give her whatever it takes for you to be able to examine her". Would she be calmer if you were there? Or not? If she's as unique connected to reality as you've been describing recently, she probably thinks she's in danger of her life.

Babalou: Thanks! I could handle it if she was merely "difficult" but right now she's beyond the realm. The hospital doctor just called and told me she's making it very difficult to even examine her properly. When you are always hearing health care professionals expressing surprise and dismay regarding how out of the ordinary this is you can't help but worry.