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?
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
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.
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.
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.
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.
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.
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.
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.
"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.
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.
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.
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?
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.