Mom's stubbornness is confounding to me...

Sunnygirl1: Yes, we're aiming for the whole "home care" experience which includes a PT. I'm hopeful that we'll find one who can work with Mom's condition and quirks, as IMO the PT at her rehab is too rigid as far as individualizing therapy goes. Also IMO Mom still fears having to do PT, I'd ideally like to find someone who can gain her trust.

Happy to report that Mom arrived home this afternoon. She's definitely happier, the last few weeks in that rehab were just exhausting, mostly thanks to that poor, poor lady she was sharing a room with. Man, you have never heard an elderly woman holler like that, it was unbelievable.

My plan was to go to the rehab this morning, grab Mom's stuff and get her scripts, take them to be filled, then hit the supermarket to load up on everything before she was sent home. The SW calls me at 9 and tells me there's a problem and the ambulance transport isn't covered because Mom needs stretcher service and I need to pay $500 up front. Uh, no, I told him, that's insane, find another way or she stays another day. Then I get there and none of her scripts are ready. However, after a while they got their act together and the ride home ended up being fully covered, so Mom wins that round. It's going to be really nice to be done dealing with those folks. Next up: the visiting nurse experience!

Does it seem like people go out of their way sometimes to make it harder on a caregiver? I hope if I ever get sick that I have someone like you advocating for me. You have jumped tall hurdles and sludged through thick swamps. Needless to say, I am impressed. I'm glad she's home. All fingers and paws crossed here that things go well.

Happy homecoming to her, Dman. Only today's saga makes me wonder yet again: what happens to little old ladies who don't have capable sons to do the arguing for them? Doesn't bear thinking about.

Fingers crossed that the nurses will be a pleasant surprise :)

I'm so happy to read you got your mom home!! WOOHOO!!! Good luck with getting some good help and P/T to get her in a better place. You have done a wonderful job!

Good job, yet again, Dman! Have you ever thought of a career as an elder advocate ?

Thanks all! I really appreciate the kind words. I was livid this morning upon getting that news, but I did my best to stay cool and just say "nope" which sadly you simply sometimes have to do. My impression of the rehab SW is that he's a decent guy but a real "company man" who isn't used to being challenged by family or advocates. Although he forced me to press the issue he managed to get it done so we were able to part ways on a positive note at least.

So she's back home, very tired and restless right now, also prone to sleep-babbling (not screaming, fortunately) and still in that "patient" mind frame but noticeably more alert and "with it". Obviously she'll need some time to adjust and "decompress" after the last two "lost" months. Next step: the visiting nurses experience. We've dealt with them before, however that was back when Mom's ailments were still a huge puzzle no one could solve. Now that she's been diagnosed and treated I hope it'll all be more fruitful as there wasn't much they could do back when she was in such a sorry state. And knowing what I know now, if I'm in any way unhappy with them I will not hesitate to force changes, either.

Okay, I see something else going on here that I completely missed before. The SW is male, right? As in Alpha Male? As in head-butting, I need to be dominant Alpha Male? I've seen this before in nursing home settings, especially when it comes to discharge planning, which is an area over which the SW can exert petty, dominant jurisdiction. In one situation, I got the impression it was as if the Alpha Male in question just had to make a stand to ensure that he had the last say in care planning.

He must have sensed you're a strong person and that triggered his Alpha Male aggressiveness... . Aha! A challenge! Watch me squash this guy and let him know who's in charge!

If you were a pushover, he might not have been as difficult. That's the way I saw it when it occurred with us.

The pre-paid ambulance charge is an example. Although I don't have extensive experience, I've never heard of that, especially if your mother has Medicare and the ambulance ride home is mandatory for her safety and health. Maybe there are other factors involved, but this sounds like pure manipulation and pettiness, or he didn't know what he was talking about and hadn't bothered to acquaint himself with the appropriate Medicare regs before he made his last attempt to unsettle you.

The discharge doctor should have ordered the scripts, and had them electronically sent to the pharmacy you probably would have designated in the application/intake papers. Getting paper scripts is kind of old fashioned these days. But given your other experiences at that facility, it doesn't really surprise me.

However, Mom's home now, and hopefully things will go well with the home care. If not, you can and have the right and obligation to make changes.

Good luck and best to your Mom.

I really don't know what it was all about but it was a h*ll of a bomb to drop just a few hours before she was to be discharged. Honestly it was impossible to not think they were trying to squeeze her one last time and there was just no way. There's definitely a corporate culture at that rehab facility, money is always first and foremost. But I just said "no" and told him to resolve it or keep her there until he did.

One thing I didn't know until recently is that the rehab facility has a partnership with the hospital Mom stayed at. It probably explains why the hospital SWs all seemed so gung-ho about LT care placement. They were all lobbying hard for LT even before Mom was diagnosed and in retrospect I can't help but feel that it slanted their perspectives and assessments. I mean during her first hospital visit I was desperately trying to explain that something had gone drastically wrong and the first SW I dealt with was sadly shaking her head and advising LT care, like I was just in denial or something.

"Dropping bombs" on discharge day is a pretty strong way to assert control, and destabilize you (if that was the SW's goal).

I can't help picturing some of the nature documentaries I've seen showing 2 rams, or moose, or lions battling for cotnrol, beating each other to a pulp to establish dominance. (You didn't see any battle scars on the social worker, did you?)

I can't believe that he didn't know that Medicare would pay beforehand; staff check insurance before admission, in my experience, although your mother's situation has been kind of an uphill/downhill situation so there may be intervening factors.

The corporate relationship explains a lot of things, as you've discovered. And from speaking with medical people, it's going to continue changing, sometimes for the better, sometimes not.

I also know from local experiences that some hospitals that have been acquired by for profit corporations have evolved to be much more efficient with better care, but others haven't, depending on the management skills and focus of the new management team.

This makes me think of the mess the hedge fund managers made with the Sears and K-Mart acquisitions after K'Mart's Ch. 11. They weren't retailers, they didn't know retailing and they mismanaged, grossly.

Another thing to watch out for are the ACOs; I'm guessing you're going to be contacted by one if you haven't already. Ostensibly and on paper, their purpose is to provide follow-up post discharge.

I happened to be with my father when one contacted him and asked a lot of personal questions. He turned the phone over to me, as he usually does, and after listening to the spiel I advised I wouldn't provide any information until I investigated the entity (as obviously I hadn't heard of it before and had no idea if it was legitimate or not).

I did some investigation and learned that this particular one is a for profit corporation, being paid by Medicare to conduct this post-discharge follow-up. Interestingly enough, the referring doctor "participates" in the Medicare remuneration for this follow-up work. So it's an extra way to get funds from Medicare, albeit nominally.

I don't dispute that some people do need followup, but what I dislike is that some of the physicians, according to what I was told by one of the ACO execs, were "encouraged" to participate and refer patients for followup by the ACO.

There may have some medical people on the ACO staff, but for the ones I investigated, the management is strictly corporate, not medical. If I had the time to investigate further, I suspect these management folks are in some way connected to the for-profit corporation management of the hospital.

But of course, and ostensibly, their purpose is to ensure that people get the proper care post-discharge, and that they get paid for it.

When the sweet nurse (who was probably one of those laid off when the for profit corporation acquired this particular hospital) asked what she could do to help, I suggested a problem which I hadn't yet been able to solve. If she could, then it might be worth keeping them involved. She couldn't, any more than I could, so I told her we weren't interested and intended to so advise Medicare, which I did.

I think that sometimes the industry (rehab/NH) plays off of ignorance and fear. You're in a situation where you don't know what to do about an elderly loved one and it can create a situation where you end up making a bad or disastrous decision. For example, my mom's first hospital visit was back on June 24th. Up until that morning I never had any reason to even consider putting her in LT care, as she was relatively self-sufficient (with my care and oversight). Perhaps it was short-sighted on my part but I had no reason to believe it'd ever come to that point. The next morning, before anyone had even scratched the surface of what might be ailing her and while they were preparing to discharge her, the hospital SW was giving me sad faces and dire information about how Medicaid would "take it all" while implying it was pretty much my only option. And it's the last thing on your mind while you're worrying about someone's well-being. Honestly, I was expecting advice on how I could go about solving the riddle of what was wrong with her, not how I could go about warehousing her. And that's no knock on anyone who has had to put someone in LT care, mind you, as obviously every case is unique. But I wanted real answers and in retrospect what I got was basically a "pitch" from someone with a vested interest in a NH chain. I'll be hitting some local online forums and boards to inform those unaware that this relationship between the hospital and this rehab/NH chain exists, as IMO people should be aware of it before they make a decision.

Dman, good point. But also, the hospital she was in is front and center responsible for her poor initial care, lack of a clear diagnosis and allowing discharge plans to drive the boat. I would be looking into a financial relationship between the hospital and long term care company. "Actionable" is the word that keeps springing to mind.

Babalou: I'm still shopping her case but no takers so far. Finding attorneys willing to take a case like hers isn't easy. I'm not sure that being half-assed equals actual provable negligence but nevertheless I'm still trying. Whether it's actionable or not remains to be seen, however IMO the hospital should be obligated to reveal their relationship with the rehab/NH they're steering their patients toward. Knowing what I know now puts a lot of the past in a different light, particularly the actions of the hospital SWs I dealt with. IMO it's sort of like discovering that your auto mechanic has a stake in a chain of car dealerships, it's a conflict of interest.

That annoying PT from rehab struck again today. After insisting that I need a better wheelchair for home, yesterday she said it was ordered and would be delivered today. Today came and went, no wheelchair. Now I have to track her down and find out the deal but I'm not wasting a lot of time on her, if necessary I'll go elsewhere. Things are busy enough without playing phone tag with people all day.

Here's the incomplete list of who you want to contact
State attorney General , state insurance commision, joint commission on nh accreditation , nh ombudsman , nj state senate committees on health care and elder affairs, ditto your Senators and Representatives. Perhaps local consumer advocacy group and or eldercsre/health care advocate group. Social work licensure board?

Don't get mad, get even, or at least cause them to have to do A LOT of paper work because of your complaint. These complaints get logged. When they see the numbers add up, action gets taken . Add to the pile.

1. DME supplies aren't always delivered the same day, unless it's oxygen. I usually find out who the DME is and contact them so I know when something's coming for delivery.

This really isn't the social workers' fault; once the order is placed, the DME schedules delivery, and it frequently depends on (a) urgency of need and (b) delivery schedules. Some of the DMEs have such a large constituency that they aggregate deliveries to specific areas by days.

That's especially true with oxygen since Medicare went to competitive bidding. We used to get our DME to come out the same or next day but now deliveries are scheduled once a week when the technician will be in our area alone.

2. Mandatory disclosures of interest.... that's an interesting concept. I think it would have to be legislatively mandated and I don't think that will ever happen. The public constituency isn't strong enough to lobby for it, while the medical lobby likely is.

But these overlapping interests might eventually compromise delivery of health care to the point that some crusading legislators may put on their suits of armor, mount their trusty steeds and take up the cause.

dmanbro: So sorry you had to go through all that with your mom. She's very lucky to have you to advocate for her. Good luck with everything now that she's home. You seem to have a good handle on things now and hopefully things will go smoothly for you (as much as possible) from here on. Thanks for sharing your experience with all of us. Keep us posted.

Right now we're working on establishing routines, patience is the key at the moment. Everything is still weird and different for her and IMO getting her into a comfort zone will take some time. She is doing a far better job of helping out with changings and such this time around. At the moment she's catching up on sleep as her sleep came in starts and stops in rehab. Hoping the visiting nurse gets to work on scheduling some PT as enough time's been wasted on that front.

Hi all, hope everyone has been enjoying the long weekend! Things are going fairly well, not perfect but honestly better than I expected. Mom's doing OK, really beginning to settle in now and she's been much more helpful than I assumed she'd be.

Unfortunately her grandkids are once again fumbling the ball, one brief visit so far and absolutely zero "help" to speak of, unless you count annoying texts which I do not. One awful group visit, barely twenty minutes and featuring some needless teary-eyed melodrama and that's all so far. Mom keeps asking me where they are and I really don't have an answer for her. Excuse after excuse, in fact if they can't get it together enough to visit at least semi-regularly (and stay longer than fifteen minutes) I'm just going to tell them not to bother at all, their loss. It's sucks that I have to play the "villain" here but it's time to step up or step back IMO.

Yes it is time. How tiresome they're being, I'm tutting away for you - and I especially feel anxiety and frustration at the thought of their turning up mob-handed for an emotional homecoming party and then vanishing without trace - there just long enough to unsettle her when what she needed was to get home and get her breath back, and not long enough to do anything useful. Grrrrrrrr.

Give them a schedule and say turn up at this time for this purpose or stay away. They have GOT to understand that right now you've got enough on your plate without being appointed communications officer for the entire family. Be ruthless, villain be dam*ed.

And I'm glad she's home :)

Countrymouse: Thanks, I appreciate that. I'm not allowing any more group visits until Xmas, I think they're counterproductive and annoying. The three granddaughters pile in, at least one of them with her boyfriend in tow (none of them drive) and suddenly they're showering Mom with pity and getting all upset and emotional when she does or says something weird (which has been the norm for a while now BTW). And not only that, they seem to want me to preside over these visits so I can reassure them that she's OK and explain why she's doing this or saying that. It's the opposite of help, it actually ends up giving me more to do (and a cat hiding under a sofa all night to boot).

Dman, how old are these granddaughters? I was thinking they were in their early 20's or so but if they don't drive they're presumably not even at the age of taking driving lessons. That puts a whole different spin on their behavior.

I'm thinking you might have to help guide them to learn how to behave under the circumstances. I don't know offhand of specific articles here or on other sites that help people understand how to interact with someone your mother's age and who is also recovering from a complex medical event. Maybe someone else here has suggestions. But I suspect that they're kind of flighty young pre-teens with boys on the mind and little experience in dealing with situations that require maturity.

One thing comes to mind is to let each of them know what your mother's particular interests are....cooking, reading, etc. and they can decide which one they want to focus on, study a bit and then plan to have an adult conversation. That's a way to turning the situation into something more positive, but it depends on whether the girls can and will make the effort to channel their interests.

You could also give them homework assignments on the topics that interest your mother. That will give them a chance to learn how to study in a nonacademic environment. And when they are conversant, they'll be better company for your mother.

I'm also wondering where are the parents of the granddaughters? Can't they provide some guidance on behavior with an older adult recovering from illness?

Without detailing the grandkid's whole long and strange saga, I'd prefer it if they'd just say "we don't want to visit" instead of texting me a dumb excuse followed by "how is grandma today?". Right now I'm just ignoring them completely, they know where she lives. The worst part is hearing Mom asking me why they never visit, I just don't know what to tell her.

Right now I'm waiting on another visiting nurse again and honestly it's already frustrating. This one is doing an "eval" regarding physical therapy needs and equipment and etc. and based on her phone call I already know it'll be next to useless. I don't know how many times I've had to explain that my mother cannot use her legs right now, yet all these PT people seem to be interested in is "sliding boards" and ramps. I just really want to get to the part where someone actually attends to actual medical needs.

And I had no idea how difficult it'd be to find a in-home physician. She'll need her scripts refilled by the beginning of October and right now there's no way I can get her to her primary doctor without an ambulance transport. I think I've found one, however there's some issue with her insurance now. If we have to just pay out of pocket we will, as in the long run it'll probably break even anyway.

Just to note, ambulette services can be a blessing for non ambulatory patients.

Hello all, hope everyone is well! Unfortunately Mom had a setback today, she's currently hospitalized with a clot in her lung. We'd made very good strides regarding her night cries, but last night around 1AM she just went into overdrive, moaning and crying about pain in her back. I eventually fell asleep but I woke up around 5-530 or so and she was still going to a very alarming degree. She finally passed out from exhaustion but she just wasn't looking or acting right and I decided I had to call the EMTs. She put up a fight and resisted, denying everything, but I insisted. They took her in and after a CAT scan she was admitted again. Poor woman cannot catch a break lately. I will keep you posted.

I'm so sorry to read this! One step forward and two steps back. My mom has had a lot of clots over the years - some in her lungs, which can be fatal if not caught early enough. She finally got a filter put in her leg years ago and has been good since. Fingers crossed your mom can get back home and settle down and start a recovery.

Dmanbro, so sorry to hear this upsetting news. Please let us know how you get on.

Your poor mother - she's had a rough summer. Things were looking so good for a few days there, but think of this as a setback and another learning experience to put a good spin on a bad event.

I hope your mother, who is I think a lot stronger than we realize, comes through this well and is back home soon.

What is she taking for pain?