Mom's stubbornness is confounding to me...

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".

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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 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.

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.

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.

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.

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

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.

GA: Thanks. I think she definitely had a stroke or something similar and no one caught it. I'm definitely taking her to a different hospital system and specifically telling them that she is exhibiting all the signs of a brain injury, which she is. This just isn't the "normal" kind of forgetfulness or "spaciness" here, it's rapid and total. In mid June this woman was reading four of five books a month, enjoying her shows and movies, playing with the cat and puttering around the yard and today she's bent over in an "L" shape all day, missing her mouth with spoons, spitting out pills and throwing them on the floor and doing nothing but demanding to "lie down". Today the PTs were trying to talk to her and it was heartbreaking, she was saying how much she wants to stay there and in the next breath mistaking the aide for her granddaughter. I cannot in good conscience bring her home, lie her in bed and say "oh well that's what happens when you're old", it's wrong and unfair to me and her. I want a real diagnosis, not useless hip x-rays. Even if she can't be helped I want a real answer or at least something resembling one. I mean no one knows what's up here and for all I know she could be like this for a day, a week, a month or five years and I cannot put life on hold forever.

The attorney I'm meeting with is supposedly an expert in the field so I'm looking forward to discussing some options here. Everything in NJ moves at a glacial pace, I need an advocate to navigate this mess. Thanks again and I'll definitely be back!

Dmanbro,

Other than going directly to a different ER, hopefully one also with a different approach, you can find some answers. There are vast differences in hospital systems. If you're in an area with a large well respected system, such as we have at the University of Michigan in Ann Arbor, go there. There are hospitals in our area that I just boycott.

I've been wondering as well if your mother has had a stroke that was undiagnosed.

Get a good rest tonight, and I hope tomorrow brings you some answers. And remember that this will be a trying week; put off anything that doesn't have to be done and allow yourself some respite time as well.

I appreciate the updates; I'm guessing that a lot of posters are following your efforts to get to the bottom of the issues and also appreciate the opportunity to be aware of the changes as they occur.

As to the attorney, law firms don't typically expect payment on the spot and generally will bill on a monthly basis. Also, if the attorney is an associate, his/her bills might be reviewed by one of the partners and adjusted. Partners also adjust their bills, sometimes writing off costs or fees if they feel it justified.

Good luck tomorrow.

GA: Thanks for your terrific reply. As far as the granddaughter goes, she's out. if she wants to "help", great, but fifteen minutes a week isn't very helpful to me or Mom.

I'm talking to an elder care lawyer tomorrow morning to get some advice and hopefully some assistance. Now that rehab is planning to discharge Mom on Friday they owe us some money which I will probably use to pay the attorney. I had paid in full through the 11th so it's a decent sum. They said they wouldn't cash the check until the 11th so if they did they're going to see me explode.

Mom's original "main" issue HAS been resolved, her red blood count is back to normal and vital signs-wise she's doing pretty well. However it's blatantly obvious to me that she's mentally not well at all, in fact she's far worse now than she was a month ago. IMO this isn't a simple matter of old age decline, as it's come on so fast and so dramatically that I just can't believe there's not an underlying cause here. She refuses to do even as much as sit up to eat, she's constantly leaning over to the left almost in an "L" shape and when anyone tries to move her she goes ballistic and holds the bed rail in a death grip. But she's so vague about the pain, she just can't or won't pinpoint it so nobody really knows what the issue is. Plus she's babbling more than ever, talking about things that never happened or about people who either aren't there or who died years ago. She needs a complete brain workover so we can at least ID the problem and move on from there. I lobbied the hospital when she was there but I was largely ignored, which will be discussed with the attorney for sure.

IMO bring her home on Friday will be a disaster that will end with her getting hauled back to the ER within a day or two anyway. I'm still mulling the options but I honestly think I'm just going to bring her straight from the rehab to (a different) ER and tell them it appears that she's suffering from a stroke or something similar. I don't really know what else to do here. I had a long talk with the PTs and the main nurse today and they actually agree, their hands are tied by the insurance but right now even trying to do PT is a waste of time, she just screams to the point where they have to stop, even if I participate. She needs a proper diagnosis here, not stupid cognitive tests.

I haven't had great luck with social workers either. The one at the hospital who placed Mom in the current facility was a good one but the other two I've dealt with came across as agenda-driven to me. The current one is OK, he's going to assist with things for the home but as far as being an advocate goes he leaves a lot to be desired.

Yeah, I have to prepare the house for her to return eventually, although I'm going to do whatever I can to get her LT care. I hate to admit this but it isn't even just a matter of being faced with overwhelming care needs, it's also that right now it's extremely difficult to see her this way. She cannot engage in the simplest conversation or do much of anything to help herself and it's deeply depressing. She clearly unhappy, uncomfortable and unable or unwilling to express why.

Dmanbro, this has really been a roller coaster ride for you, hasn't it?

Maybe a few experiences I've had can help with suggestions, but first, see #1.

1. Put the granddaughter on a permanent hold and tell her if she contacts you again that you just don't have the time to discuss issues with her - that's being nice.

Just out of curiosity, does she work? Is she as irresponsible and unreliable at work?

2. Find out what the therapists' opinions are.

3. I suspect the issue with insurance may be that the original reason for admission has been resolved; therefore, the NH has to act on that basis and on that Dx; otherwise payment would be an issue.

So the trick is to get a new script with new diagnosis.

4. Contacting the admitting doctor is good; you may have to be persistent. If she has a PA, try to make contact with him/her; I've found that I get much quicker response if a nurse practitioner is involved than if I wait for the doctor.

But that only holds true if the doctors have authorized the PAs to act. I'm going to be changing from a PCP who won't authorize his PAs to do anything more than see patients and write scripts.

5. If you have to, take your mother for a doctor visit, with a geriatric specialist or neurologist for the behavioral issues. I've been wondering as well if it might be a medication reaction or interaction issues.

It'll be an ordeal to leave the facility, but if a PCP or the doctor who scripted for the rehab care is one in whom you have confidence, seeing your mother's situation now could convince her/him to write a new script with a different diagnosis.

6. As if you don't have enough to do already, start contacting and interviewing home care agencies for nursing, PT, OT and home health aide. Some rehab facilities have their own recommended services; check them out but also do your own research. I've been through this 3 times and each time rejected the recommended service and chose one which either Dad or I wanted.

7. I think another ER visit may be the way you'll have to go to get some assistance. You may even have to arrange medical transport directly from the rehab facility back to the ER.

8. DEFINITELY do see an elder care attorney; if they can't fit you in for a personal appointment, you can have a phone appointment. It might cost a few hundred dollars, but you hopefully should get some recommendations and assistance.

9. I think the nursing home's hands are tied by the admission diagnosis and reason for treatment, so you might also ask the admissions director or DON what he or she can recommend and how you can get more help without a complete discharge.

You may have to go on private pay; that's what we were told when my father just didn't feel ready to leave after his first hip fracture.

10. I personally haven't had much positive interaction with rehab facility social workers (unlike those who work for the home care agencies), so I kind of try to keep them out of the loop if they're not ready to demonstrate a capacity for problem solving.

Good luck; be sure to take some down time for yourself today as the whirlwind of activity and perhaps frustration is going to escalate as Friday creeps closer.

Unfortunately things have suddenly spiraled downhill. I arrived this morning for a visit and the social worker informed me that they're going to discharge her on Friday the 7th, not the 22nd. This is a disaster, as Mom is clearly mentally broken. She doesn't walk, she needs to be changed as she can't or won't use a bathroom or even a bedpan and now, since yesterday, she's acting like she can't feed herself either. They're focused on her original issue that led to her hospitalization (stomach bleeding the led to low hemoglobin count) which in their eyes is OK now but no one wants to address her obvious mental issues at all, despite my NUMEROUS pleas. I've contacted the doctor again and asked her to please at least do something to get some sort of diagnosis here. And tomorrow I'm seeing an elder care lawyer as well. The Medicaid process has just started (pre-screen) and I'm waiting to hear back from them but who knows how long that will take.

IF she'd improved a bit to the point where I could transfer her to a wheelchair without a struggle and IF she could at least nominally participate in her care it might be a different story but right now I can't see how I'll be able to deliver her the round the clock care she needs. I've expressed this and even told them I believe it'll destroy my health too but no one seems to want to hear about anything other than insurance. I can't see any other option but to send her directly to the ER again as she's clearly suffering from something although I don't know what.

GA: I actually think she needs to visit on a weekday and stay for a "full shift" so she can see "what's going on" for herself, as IMO it'd probably help her realize that her expectations here may be set a little too high. It might also help her to realize that visiting for thirty minutes right before visiting hours end isn't really "help" at all, it's more like self-serving "expectation management" (like that phrase!) than anything else.

I think you're right about the granddaughter. Her excitability might inflame or excite your mother more than she already is during this episode. It might even be a relief if you ask her to stay away for awhile while your mother is having some real challenges.

The staff there was very kind to me today, as they were well aware that Mom was pushing buttons today. "This place sucks, the cable is always out" (she never turned the TV on and continues to act like the remote is an alien artifact), pretending (very poorly, BTW) that she was choking and screaming for water (which was four inches away from her perfectly functional hand) and generally being a real pill. While I'm usually very patient with Mom, today she was really working me over. Her requests to "put food in my mouth for me" especially drive me insane. While I didn't appreciate the insurance prattle yesterday, I realize they deal with this stress every day and days like today really put their jobs onto perspective. I hate losing my cool and I appreciate them taking a second to talk me down when the stress gets to me.

Blocking her oldest granddaughter tomorrow is a "must". She's trotted out every "I can't make it today" excuse in the book this week but she says she's going tomorrow, which means I'll most likely get a panicky call around dinnertime about how "grandma isn't acting right what do I do?" and etc. Although I really do feel bad for her, I think it's time to have a talk with her to explain a few harsh realities here, as at the moment she's still a little bit too much "pie in the sky" regarding her grandmother's condition.

Glad at least one aspect was positive. Seems like the rest of the day was a combination of unpleasant surprises and frustration.

Definitely take a day off; it seems there may be some new developments to consider, but spend some time doing things for yourself. And spend some time outside - go for a walk if you can. Nature has marvelous ways of soothing and healing wounded spirits.

Well, the PT in question was very nice to me today, so that's water under the bridge as far as I'm concerned. It was appreciated too as today was probably the worst day of the lot. Woke up with a migraine (beat it back) and showed up around an hour after breakfast. Apparently when told she had to sit up to eat Mom shoved her tray off the table and got everything all over the bed. Then while I was trying to get her up and in her chair she tore at my front shirt pocket which caused my phone to fall and break (had to replace it). Then she refused to eat lunch unless someone "fed her". Then when I tried to take her for a stroll (which is always the best part of my visits IMO) she actively tried to slide out of the chair then tried to rock it over. Then she slumped over to one side so it was impossible to walk her around without banging her head into everything. Then she said she'd soil herself if I didn't "let her lie down" which she proceeded to do as promised. She's obviously not well mentally, we have the psych doctor coming in again (sigh) next week to re-evaluate her. It was fairly depressing, as I felt she made a few small positive steps over the last few days, which were totally erased today. Going to take a day off tomorrow for my sanity's sake, much to do and much to ponder.

Dmanbro, I've been there as well. Sometimes it's as if the caregiver is at the bottom end of a see saw (we called them teeter totters) and all the pressure slides down and buries the caregiver. Sometimes it rains, sometimes it snows... the caregiver just keeps getting buried.

But letting off steam helps release the pressure.

Hang in there. These roads we're walking aren't always paved and smooth; many times they're filled with ruts and mud.

I too hope you have a better day - maybe you can even look forward to cooler weather, depending on where you are in the US.