Mom's stubbornness is confounding to me...

What caused the gastric bleed? And, more to the point, what medications have been discontinued/added/changed? They surely *can't* discharge her if you refuse to accept responsibility for her, given the deterioration in her condition since they began treating her? GA's plans seem good to me - hope you get some co-operation with them.

Trying to add a bit of hope here....

NJ may have some rehab facilities specifically for brain injury.

If your mother did have a stroke, there might be rehab facilities specifically for that. I don't know about inpatient facilities, although a relative did work for a traumatic brain injury center as training for nursing. I believe the patients were in-patients.

This next paragraph is copied from a post I responded to a few weeks ago. It could apply to your state.

There's a top notch facility in SE Michigan, the Rehab Institute of Michigan, with one facility that specifically deals with brain injuries. People are treated on an outpatient basis.

Just googled the issue and found that there are some facilities in NJ; I didn't do a lot of research as it's not certain she did have a stroke, but here's the link if you do get confirmation that's what occurred:

google/?gws_rd=ssl#q=Rehab+Institute+of+New+Jersey

Thanks again! St Peter's hospital is nearby and I've read that they're highly rated re: geriatric services, so I'm leaning toward bringing her there (and it's a Catholic hospital which might please her as she was raised catholic). I really just want to see her receive some care here and IMO home is not going to be an answer right now, if ever.

Countrymouse: It was caused by OTC pain meds, naproxen and ibuprofen specifically. Since she's been in rehab they've given her an anti-depressant, anti-anxiety (as needed although the effects were minimal) and they tried an anti-dizziness medication too after she complained about that, as they thought it was why she would panic so much about getting out of bed. Plus her regular BP meds, the names of which I don't have handy right now. Just tylenol and the occasional tramadol for pain.

I flat-out told them I don't think I can handle her right now in this state and furthermore I think it'd be detrimental to my own health. I'm pushing the doctor there hard to look harder at what's going on here (and the staff seems to be with me there) but they're focused on the reason she was admitted and not what's gone on since then. Insurance, insurance, insurance. And in a way I see their point, as she hasn't had a single meaningful PT session at all and not for a lack of trying. Mom just goes insane when she's made to move and I mean insane, to the point where she's actually scaring people, me included.

Okay, this might sound wild, but it has happened: impurities in medicines from emerging market countries have caused dangerous side effects.

I don't know if this link will be deleted, but if it's not, read the section "After Heparin":
http://www.fda.gov/NewsEvents/Testimony/ucm271073.htm

I don't see any copyright notations so I'm copying a portion and adding paragraphs breaks for easier reading):

"The 2008 heparin contamination crisis is a case study in the vulnerabilities of the global supply chain. Heparin is a widely used injectable anticoagulant, derived from the mucosal tissue of pigs.

In early 2008, contaminated heparin from China was associated with an increase in deaths in the United States. Whatever was contaminating this imported heparin could not be identified by the tests used at the time.

After launching a far-ranging investigation, FDA scientists, working closely with academia and industry, developed a test methodology that identified a previously unknown contaminant in Chinese-manufactured heparin.

The contaminated heparin contained oversulfated chondroitin sulfate (OSCS), an intentionally added adulterant

(my addition, from a google search: an adulterant lessens the purity or effectiveness." )

An outbreak of blue ear pig disease had killed off a large portion of China’s pig population, creating an incentive for criminals to seek an alternative that mimicked the chemical makeup of heparin but, tragically, proved dangerous to consumers.

FDA publicly referred to the heparin contamination crisis as a “wake-up call.”


The fact that the FDA has increased its due diligence doesn't necessarily mean that drugs from emerging market countries are now safe, and don't have adulterated substances. One has only to look at the record of other contaminants in consumer products.

Given the rapid change in your mother's physical and mental behavior, I'm wondering if one of the drugs was obtained from a low cost supplier and was impure or adulterated.

Seriously, it's not as far fetched as some may think.

I sure wish I knew what happened to her. I didn't think it could get much worse than Friday was but today was even drearier. Hearing that they were discharging her on Friday was like a kick in the stomach, just a gut punch. Like I said above, having her come home like this would be a nightmare. I don't see any other practical option but to take her to another ER and I hope the ambulance transport will do it because I can't see any serious way to get her in a car right now.

When I transferred my father from a bad rehab place to a better one, the SNF staff did make the arrangements for an ambulance, but in retrospect I should have done it myself because the ambulance driver was obnoxious, nosy and sped all the way to the new facility.

You might be able to call the local EMTs to see if you can make arrangements for transport ahead of time.

Or you could ask the social worker at the rehab facility to make the arrangements. That might be something they would do. If the social worker doesn't want to do it, ask someone higher up, maybe the director of nursing.

I'm really hoping that this lawyer can offer some real help here. I know beyond a doubt that bringing her home like this will be a real mess. If she was just a little more able right now I could handle it but this is beyond my scope and abilities to deal with all on my own.

Dmanbro, I've been thinking about this situation and think it might be just as well to take your mother back to an ER now. If she's not getting treatment for whatever occurred, she's not getting therapy, she's declining and you're in emotional pain seeing her suffering...well, I don't think that waiting until the rehab determined discharge date of Friday (if I remember correctly) is going to offer any insight or improvement.

If she has had a stroke or there's something going on medically, the sooner you can get treatment the better.

You might want to think about calling an ambulance when you visit today after the appointment with your attorney.

And I'm not trying to be bossy or pressure you... I just keep envisioning her sloped over, frightened if not terrified, suffering from who knows what and in a facility where the treatment doesn't extend to the kinds of diagnostic intervention that might be required.

Regardless, I do hope the day goes better for you and your mother.

Well, the attorney was somewhat helpful but she needs an huge retainer fee to proceed and it's way, way more than I can put together right now. I'm looking into other resources but so far not much luck. I'm going to keep working on it and see what I can find, feeling a bit hopeless right now.

Update: Heard from her rehab doctor today and really expressed my dismay re: discharging her this week. Then she called me back and agreed that Mom needs more tests done so right now she's headed back to the hospital. Also had the chance to speak to an advocate who advised that I must refuse to take her home regardless of what the home has to say about it. Perhaps they'll finally give me a diagnosis here so we can either treat her or work out practical long-term plans. Hoping it works out, I'll keep you posted.

Good news on the issue of moving toward a more definitive answer to the medical mysteries. I just keeping thinking that there's something more going on with your mom.

Thanks for the updates; it really is helpful to know how situations work out as so often posters never come back even to acknowledge answers.

Your experiences can help all of us.

So glad she's heading back to the hospital for answers. Hang in there, and very glad you have an advocate !

Now, here's a prescription for you, Dman.... if you don't have time to get a really good meal (think prime rib, baked potatoes and salad bar...yummmmm), at least pick up something good to eat so you don't have to cook after a long tiring day. You deserve a break too, and this has been quite a challenging time for you.

Thank you all. I didn't hire the advocate as of yet although his price was WAY less than the attorney wanted. They both provided some helpful advice but the advocate was quite a guy, right to the point with no BS. He offered this advice free of charge, BTW.

Interesting, but as soon as I mentioned that I would take Mom directly to an ER that wasn't part of the network the care facility works with, all of a sudden tests that I've been asking about for weeks were suddenly ordered. Perhaps the words "attorney" and "advocate" helped too. Also finally saw the ombudsman and laid out the deal for him too. The EMTs that moved her were stunned when I told them they were going to discharge her this week. Based on everything I know now I'm just not going to accept that discharge, not until a) I have a real actual diagnosis and b) until a firm, realistic long-range care plan (and not "you do it") is in effect. I spoke to the ER nurse and spelled the whole thing out for her and told her what I think needs doing regardless of what the doctor might have ordered.

I actually feel kind of stupid for not being more aggressive before (even though I thought I was) but when you're new to all of this you kind of expect them to do what needs to be done without having to prod them so hard. Now I need to wait and find out what happens next.

Dman, if anything, the learning curves in this field can be very flat and suddenly very steep. I've certainly looked back and wished I knew then what I eventually knew, and I still have a long way to go. It's a never-ending educational experience.

Don't feel stupid; I suspect a lot of people here have been in your shoes; I certainly have. When I think back and become upset at how naïve I was, I only get frustrated with my old self.

Just look forward and be thankful that you're changing directions now.

Adding...

"Perhaps the words "attorney" and "advocate" helped too"

Perhaps money and/or lost funds from Medicare helped too. It's amazing what it sometimes take to inspire motivation.

I won't name the advocate I talked to as I don't know if it's against the rules here or not, however he's easy to find online and I'd happily share it via private message if anyone wants to know. His fee is slightly more than I have available right now but if the rehab puts up a fight I will definitely scrape it together and bring him on board, as he seemed like the sort of guy they would absolutely dread to be forced to deal with.

Perhaps it also helped that the ombudsman arrived right in the middle of one of Mom's "bad spells" with the yelling and the carrying on and all. While I bummed that she's in the hospital again, I'm hopeful that at long last there's a chance that they can at least narrow it down to SOMETHING, as today she was clearly miserable. My gut feeling is that everyone so far has missed something here, something vital. Too bad it took so much haggling to get someone to look again, though.

Dmanbro, your mom is SO lucky to have you. I think it was after my mom's 3rd hospitalization in as many months that someone here pointed out to me that I didn't have to "take delivery" if I thought they hadn't gotten to the root of her problem. My mother trained me to be a "good patient" and she whimpered at me that she wasn't going to get good care any more because I was being difficult. Actually, just the opposite happened. We got a geriatrician and a psychiatrist to consult with and started mom on an entirely new road of "comfort" and not "fix this small problem".

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.

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.

"If she's as unconnected"

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".

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.

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.

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.

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

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?

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.

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.