Mom's stubbornness is confounding to me...

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.

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.

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.

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.

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.

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.

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.

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.

"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.

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.

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.

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.

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.

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

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!

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 :)

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 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!

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.

Are they going to do PT for her in the home?

Mine too JessieBelle, thanks! The last time the rehab was going to discharge Mom was in early August, but at that time her injuries still hadn't been diagnosed properly. I knew there was no way I could adequately care for her in the state she was in then, after all, they barely could and they have a facility and a staff. If I hadn't told them that I was shipping her directly to the ER from there I shudder to think of what might have been. This time, though, I don't think coming home presents any kind of danger to her or anything. Whether it works out or not is a different story but I'd never even consider it if I felt it was just plain wrong, like I felt it was before. If I felt it'd compromise her well being I'd make other arrangements, but IMO she at least has a fighting chance.

And it's what she says she wants. I know that sometimes we sort of infantilize the elderly, especially when they're "unsound" (or seem to be) but nonetheless, she's cognizant enough to know where she is and why and she wants to return to her house. I can't (within reason) just discount that, as she's earned at least that much.

dmanbro, my fingers are crossed that everything goes well. There probably won't be many "old normal" days again, but I hope there are a lot of good new normal ones. If she does need more help in a facility later, at least you will know that you did what you could and it is what she needed. This has been a hard stretch of her life and I feel so bad that the doctors missed it for so long.

Mom hasn't been been home since July 7th and the few weeks prior to that were part of the blur she was in, so for all intents and purposes she hasn't really had a "normal" day at home since late June. This is by far the longest she's been away from home, my parents bought their house in 1959 I believe and the longest vacation they ever took was maybe six or seven days and that was back in the late 1970s.

Good for you for putting the granddaughters on notice!

I think your perspective on your mother's return home is a wise one - hopeful and positive yet recognizing possible negative factors may arise.

I would also expect your mother to be very tried the first few days as she acclimates to her own home. It's an adjustment, and sometimes there's a buildup of fatigue, especially under the circumstances of an unpleasant roommate. Your mother's probably not getting a good rest right now.

It's kind of like having quit a job and being ready to go and move on but having to fulfill the 2 or 4 week or whatever notice commitment. Short-timers aren't just in the work place.

And I touched on this issue in a different thread but I might as well update it here: I informed Mom's granddaughters that she's coming home and now it's put up or shut up time for them. They can either help or step aside, no middle ground. They live within walking distance (and if they need a ride here it's only five minutes away) so they don't have any more excuses. I can survive without them but obviously if they'll pitch in a little it'll be a huge help for both of us. Of course I'm keeping my expectations low in that regard but I'm still trying to be fair about it too.

Thanks everyone for the very thoughtful replies. I couldn't live with myself if I didn't at least try to make a go of it at home. Perhaps it'll work, perhaps it won't, but I have to at least try. IMO it's the right time too, as over the last week Mom's started to lapse into a "patient" mentality that's not doing her any good at all. Too complacent and (not to sound mean but it's true) too whiny. IMO she needs to feel "useful" again and she needs more conversation, more visitors and she needs to get away from the whole NH atmosphere. Right now she's sharing a room with a really sad case, a woman who literally never stops yelling and it's making it very difficult to even have a simple visit with her anymore. I asked them to move her but they're telling me they "can't" right now so she just has to deal with it but seriously, it's not a good situation at all.

dmanbro: I'm not sure if this will help or not, but when my mom was in the nursing facility for dementia, she had been very sick (in hospital) a few times. When she would be sent back from the hospital, she was very frail and weak - it took a lot out of her. She couldn't walk so she was in a wheelchair when she wasn't in bed. Every time they would get her up, she would hold on for dear life to the rails. It took 4 people to lift her from the bed to the wheel chair (in her mind, though, she did this all on her own). It was like she couldn't trust the people caring for her (she was dead weight). She told me that they would just throw her around! I knew this wasn't true because I was there a lot and saw them caring for her. I think that when they are afraid of falling, being moved or whatever, it's just in their mind, but they can't help it -- it's part of the disease (I don't know if yours has dementia or not), but even the fact that they are used to doing something for themselves and then have to be totally dependent on others, it's just very difficult. In some ways I can relate because I fell down a flight (13) of stairs a few years ago, and I broke my hand hit the front and back of my head, pulled my shoulder out from trying to catch myself, and fractured my hip. I was a mess and had to have help with everything while in the trauma unit at the hospital. It was very hard to let people help me, but I had no choice. I can sort of relate to what they must feel. Hope this helps some, sorry for going on so long, but I feel for you and what you're going through. It's just as hard for you to see her be this way, but take care of yourself and going every other day may definitely help.

That's interesting because it's almost the same thing that happened to us the last time. The discharge planner pointed to one particular agency, and when I said we'd used VNS and probably would again, she gave me a strange look, and said something to the effect of "well.....this one is one is good too..." I wish she had told me that they weren't up to par because it actually took 10 days to get home care started.

I was also on guard because the last 2 rehab events ended with the social worker making a referral to a company I had never heard of despite the fact I told her we would be using VNS.

But I understand hospital discharge planners are in a delicate position and could be seen as showing partiality if they recommended a particular agency over another.

On a humorous note, while we were waiting for the discharge papers to be prepared, I did have a chance to meet with the in-hospital rep of another agency.

This woman was so polished she could have worked for a Fortune 50 company. She used all the corporate buzzwords applied to medicine, was smooth talking, and definitely very experienced in sales. She could easily have been a top salesperson in whatever company she worked for. But she was just too slick for me.

Maybe next time I meet with the discharge planner I'll take some bagels or donuts up for the staff.

And I do agree that your suggestion for a home assessment is very helpful. I wouldn't have thought of it had you not raised the subject.

GA, not taken as a challenge at all! Therapists, nurses, etc., vary from agency to agency and from region to region. We've had the good and the bad. I just wanted to pass on the fact that you can ask for a home assessment. One of the things that has made this site so helpful is knowing what I'm allowed to do: like saying I'm not taking her home till you fix her!

I also find that getting agency recommendations is best done in person. I recall one discharge RN laying her finger on one VNS local agency name and shaking her head, then pointing to the adjacent one and nodding.

Babalou, good suggestions. I'd like to share some insights from our experience with home evals.

The first was after Dad's first leg fracture. The PT and OT both wanted to come - not sure if there was a jurisdictional tussle but they did work together. Good suggestions were made, however, I don't think that therapists always know the best methods of accomplishing something immediately.

E.g., the first and latest therapists and nurse all recommended "installing" a ramp as the exterior stairs could be dangerous (I said this over 3 years ago but didn't get anywhere in terms of a ramp actually being constructed).

I thought perhaps I could leverage the current therapist's concern, contacted the building department to get slope requirements, clearances, approved contractors, etc., and literally got shoved off to what I suspect might have been their preferred contractor whose attitude was "I'll tell you all the great things I'll do for you." Yeah, sure, here it comes....a whopping 10 on the BS meter.

Not only would he not come to view the physical situation, he wanted me to send him a photo (I don't even have a camera), and advised he expected me to come to his office for a 10 minute interview at which time he would present his proposal. What?? What arrogance! (I make notes of these incidents for the book I eventually plan to write about humorous and ridiculous contracting experiences.)

The therapist thought I could get a ramp built in a few days. The "contractor" said it takes about a month to get the permitting process completed, then a few days to construct the ramp. When I told the therapist, she was shocked; she had no idea what was involved in constructing a ramp. Good idea, but the details weren't considered.

One of the OTs was concerned about getting a walker in the small bathroom and recommended removing the door completely, eliminating any type of privacy. That wasn't one of the suggestions we accepted.

On the whole, though, the best things they did were to support me in trying to focus on removal of trip hazards. Sometimes that kind of recommendation from an "authority figure" means more than from a daughter.

So, yes, if the PT and/or OT will come out, go for it, but be prepared to take their recommendations under advisement.

I hope it doesn't seem as though I'm challenging your advice, Babalou, because I'm not. I just wanted to share some older and more recent experiences to warn Dman.

We've had VNS in the past, one of the nurses was outstanding but eventually left, as did a few of the other good ones. Dad and I were both pleased with everyone they sent except the OT who wasn't really too interested in the assignment.

Wondering why these good folks had gone elsewhere, I did some research and learned that VNS is now a for profit organization. This should improve on what was already a good business model.

But the local VNS had deteriorated. The intake person was new, had no motivation, no concept of following through. It was her position that it was up to the doctor to fax the script to them. The doctor's staff wasn't any better and took the position that it was up to the VNS to fax the request to them. Sheesh! Neither would budge.

This went on for 4 days while these duds were sitting on their butts doing nothing. I kept calling for a status check, but the answer was always the same: "the paperwork hadn't come through yet." Did they follow up with a call? NO.

I don't entirely blame the VNS; the doctor's staff was to blame as well. After 4 days of screwing around I got disgusted and called another service which got busy and got the issue resolved.

Almost 2 weeks later, the "intake" person from VNS called me to follow up. It gave me great pleasure to tell her I hired someone else and would never consider them again.

It's a sad situation that what was once a great home care service has declined so much. Then again, that may only be in our area.