Mom's stubbornness is confounding to me...

You have done a STELLAR job in trying to get your mom ready to come back home. But it doesn't sound like that's in the cards. It sounds like something is really off in her brain or her body that she can't help and can't control. I agree with trying to get her to a neurologist to assess her mental capacity. The sudden loss of words and ability to use a cup or spoon and waking in the night signal much deeper problems than anxiety or stubbornness (to me anyway).

But my bigger concern is that you take care of YOURSELF! You've been a wonderful son, but you can't give up your life and financial future to take care of your mom. You can be her advocate, but you must look out for yourself and your own future as well. Hugs to you - your mom is SO lucky to have such a loving, concerned, and resourceful son. You are one in a million!

blannie: Thanks so much. The weird thing is that when she DOES eat or drink her supposed inability to do so vanishes. I mean that she'll SAY she can't reach something or that she can't eat herself, but once she actually does it's not a problem. It's like she just doesn't want to make the effort. Like today, I show up and there's a cup of water lying on the bed (with a lid, thankfully). I asked her why she didn't just put it on her table which is maybe eight inches away and she says she couldn't find it. Same with the call button/remote. She'll say she doesn't know where it is and it'll be right there next to her. IMO she CAN do some of these things but she won't, that's the mystery.

Dmanbro, that is the clearest description of a damaged brain you've given. It really does sound as though your mom may have had a stroke, or perhaps it's "just" damage from dementia. But the very real damage (which can be seen on an mri) will allow a neurologist to explain to you why this is happening. It also occurs to me that there has been a stroke, patients sometimes lose a part of their visual field, not enough to be blind, but say half of their right or left field. So they don't realize that they are not seeing something that is directly in front of them. Sometimes a part of the brain that controls initiation is affected. The patient can't start the action of picking up the cup, but once they are cued to do so, they are fine.

A visit to a neurologist is very much needed.

Yes: it's called "initiation" - the link that starts off whatever it is you want to do. It's incredibly weird until you twig to what's going on.

Example: place requested tea and pastry in front of mother. Mother is pleased. Nothing happens. "Would you like me to help?" "No I can manage thank you." Long pause. Nothing happens. "Are you going to drink your tea?" "Yes, lovely, thank you." Further pause. Nothing happens. I place mother's fingers around the cup handle and help her lift the cup. She drinks quite happily.

The crucial thing to understand about this baffling scenario is that:

your mother knows what to do
your mother is physically quite capable of doing it
your mother has nothing against doing it
your mother's brain is missing the bit that starts everything off
your mother is unaware that that bit is missing, therefore
she doesn't know anything is going wrong therefore
she sits there in quiet content doing nothing and doesn't drink or eat until you start everything going.

So, sorry, to emphasise - her brain cannot figure out that there is anything wrong.

So, to lessen the frustration, discard all ideas of intent on your mother's part. She can no more 'act normal' than your hoover can plug itself in and switch itself on. You do that bit for her, and all will proceed as (semi) normal.

dmanbro, in an earlier post you said "Although I made promises to her about this" was that in reference to your Mom not being placed in a nursing home?

If this is the case, when did you make that promise? Like so many grown children do, they make that promise back when their parent(s) is still very active, still driving and grocery shopping, tending to the house and yard. We rarely ever think that our parent(s) will be unable to care for themselves, unable to walk, and their mind just isn't working correctly. We never visualize our parent(s) being old.

When it comes to that promise of living at home, if our parent has memory issues, would they even remember that promise? Probably not. Your guide is to have the best care possible for your parent, and if that means living in a continuing care facility, then that is the best choice.

Thanks all. I've already concluded that there's no feasible way I can bring her home in her current condition. First thing Monday morning I need to talk to the social services and billing departments to discuss short-term options, then I have to get cracking on the LT ones. And I have to press the medical staff harder to get them to do whatever tests they need to do in order to get some sort of diagnosis here.

Yes, I did promise her re: putting her in a home but I'm not going to be able to keep up with caring for her in this condition. I'd LIKE to but the reality is that right now she's too helpless and the house is just not set up for that sort of level of care. And neither am I. For the last three and a half years it's been relatively easy to help her, as she's been coherent and semi-capable but this is different. I do feel bad about that but I don't see any other realistic option.

I agree with you 1000%. I know you wish it were different. You could have never foreseen this, dmanbro. I have my fingers crossed that it is something that can be healed or at least managed. That will take time, though, and Medicare just doesn't have time to give. :(

JessieBelle Thanks, I really do wish I'd seen it coming but can't change that now. I'm trying my best to work with the doctors and staff but one of the biggest obstacles is how Mom just won't give anyone the same answer twice. I have repeatedly asked her if she feels dizzy or lightheaded and she always replies "no". Plus her appetite is downright mighty. Then today she tells the nurse she's dizzy all the time. So right now the focus is on that. I'm supposed to speak with her doctor tomorrow to discuss that and the hip pain she's experiencing, as regardless of the source it's holding everything back. I visited yesterday and she was doing fairly well and I thought OK, maybe something is beginning to work here. Then this morning she was a disaster, being evasive and weird again all of a sudden. Right now she's still a short-term patient through late August but after that I honestly have no idea. Trying to get her enrolled/accepted for Medicaid but as you probably know that whole process moves like a glacier.

D, when my mom went to rehab after her stroke, we foolishly assumed that she'd rehab, move from Independent Living to Assisted Living and she'd just need a little more help. Well, no. First she told us "you have to pay for everything here (???) Then she started crying during therapy "everyone here gets better and leaves except me!" (My mother was not from the criers). The she reported that dead bodies were being transported past her room late at night. Then she said to me, with the dispensing nurse seated at her bedside giving her her meds "you DO realize I have to take my meds all by myself here, don't you?" I gently asked her what she meant; she imperious pointed at her water pitcher. I wasn't sure what this meant but I got the facility psychiatrist in to see her the next day because THIS WAS NOT MY MOTHER. She was diagnosed with vascular dementia (she'd previously been dxed with Mild Cognitive Decline, so she was already sliding when the strike happened.

Ever since, my mother's reporting of symptoms has been very difficult to interpret. If she tells you she's dizzy or in pain, she probably is. But if you ask her are you...., she generally says yes. It's a real crap shoot sometimes, trying to help her.

PS, the facility will most like accept her "Medicaid Pending". It's important to ask about that.

Babalou, did you find that the talking nonsense got better, or at least improved a little? Your post reminded me of a fun couple of hours waiting in ER while mother lay back and contentedly talked utter twaddle, pretty much non-stop - I gave up trying to make any sense of it after the first quarter hour, God knows what she was going on about. But that didn't continue past a few days: other sorts of barking-ness, sure, but not that particular one. I put it down to a TIA.

In the two years since her initial diagnosis of VD, the twaddle comes and goes. There are days that she's perfectly "there" and some where the place has been sold, the union is coming to take over, there's a flood in the (nonexistent ) basement and so forth. Mostly my mom is very guarded at times and recently told a doctor "I don't tell everyone what I'm thinking".

But the days when she wouldn't believe it was me on the phone seem past, thank you. And yes, I believe that there are continuing TIAs.

Today was an annoying day. Mom's blood work early this week revealed a sodium deficiency (this has been an issue in the past too) which was successfully treated via IV for a few days. So PT has been slower this week, in fact today was the first day this week where we were really able to push it a bit. She didn't do too badly today either, I see real progress regarding the panic attacks and even the fear of falling has lessened in intensity (although it's still a problem).

Just last week I spoke to the social worker who told me that the current recommendation was to keep her there until at least August 22nd. So now that the first 20 days of her Medicare coverage are up, I had to write them a nice huge check to cover the current copay. I'm working on the Medicaid application but that's going to take time (and this is NJ, the state that botches everything).

The annoying part was during PT. One of the therapists, right in the middle of getting her into the wheelchair, starts telling me that her insurance might "discontinue coverage" because "she's not demonstrating progress". Then she somewhat snarkily says "we haven't seen much of you this week" (I was there every day) and that "part of her rehab" is to "train" me in proper caretaking tactics.

And I replied that maybe mid-lift isn't the best time to drop that on me, especially two days after I wrote them a check for several thousand dollars. I like the PT people (and the staff in general) but I was not pleased, either by the timing or the news or the tone, for that matter. This is all new to me and I'm navigating it all to the best of my abilities so I really don't appreciate getting an attitude from anyone about it. Here I'm thinking I have things at least temporarily under control leaving me free to focus on her health and now I have to worry about them releasing her before I've had a chance to prepare or fully explore my options.

But the crack about me "not being around" this week PO'ed me big time. I can't very well be there for eight hours a day nor can I always re-arrange life to fit the therapist's daily schedule. Am I wrong in thinking that was kind of an obnoxious thing to say?

There has been a lot of chatter on the forum lately about how unprofessional and even callous some health care providers can be. You are not wrong, the PT was out of line, it was totally inappropriate to be discussing this during a therapy session. We should be treated as part of the health care team working for the best interests of our loved ones, not some disrespected lackey.

I think i would have a chat with the head of the rehab department. That sort of news (lack of progress, billing etc) should not be delivered in front of a frail patient. I would also discuss with them how feasible the idea of mom coming home is.

Are you talking with the social worker at the facility about the Medicaid application? S/he might be a source of assistance.

I agree with Babalou - any professional should know not to talk in front of a patient, particularly one who is having major issues with progress. Talk to her supervisor about it. Or take the therapist aside in the moment ("Uhhh, can I speak to you over here for a minute?") and tell her you don't appreciate that kind of comment in front of your mom. I'm sorry you're going through all of this!

Maybe she was just having a bad day but the timing couldn't possibly have been worse. And I'm almost fifty, I definitely don't need to be spoken to with an almost scolding tone here, as I've been putting plenty into this. If it happens again, I'll go over her head and demand a chat with her boss.

May I offer a slightly different approach from demanding a conversation with the head of therapy if the offending therapist is out of line again?

I don't disagree that her remarks were ill timed and inappropriate. However, you don't know what precipitated them, or what might have occurred when you weren't there. The fact that she mentioned your absence makes me wonder if something did occur between her and your mother when you weren't there.

But think of a few issues: (a) these people are in a difficult and challenging situation, working often with patients who aren't always cooperative but with families that want results; (b) you don't know what goes on between your mother and the staff when you're not there.

Put yourself in her position. If you behaved inappropriately at work, would you want someone to speak with you about it and give you a chance to explain your actions, or would you want it reported directly to your supervisor, especially if you really weren't aware that you were out of line?

Give the therapist the benefit of a doubt, approach her first without waiting to see if anything happens again. Explain your surprise and shock, and ask if your mother or you precipitated her comment. Assure you that you're been trying to be present as often as possible, that you respect and appreciate her efforts, and want to ensure that you've done nothing to have caused the remarks she made.

Usually that kind of approach immediately produces chagrin, embarrassment and regret for the action, and causes the individual to feel embarrassed and assure you that you weren't at fault.

You're more likely to get an honest answer and resolve any problems than be creating a standoff or going to her supervisor.

If you confront her, you only put her on the defensive, and that solves nothing.

See this as a creative challenge to pave the way for a better working relationship, while finding a way simultaneously to let your know (a) you feel that you're working together for mother's benefit, and (b) you understand how difficult it is to work with patients, and (c) you want to establish a working relationship so that if issues arise in the future, the two of you can address them and create solutions together.

Trust me, you'll both feel better if you address this in a friendly rather than demanding manner. No one likes to be chastised and it only creates resentment.

You'll likely face other challenges on your caregiving journey; let this be another learning experience in how to channel your offense at what was an offensive encounter into something more helpful to all involved. Make her feel good about herself and she'll remember that as well as your sophisticated response.

GardenArtist: Thanks, I do agree. Everyone has a bad day here and there and I'm not going to hold a stupid grudge. New day, fresh outlook and all. I just didn't appreciate the additional pressure, it just makes everything seem more urgent and adds to the stress of the whole thing. I just want everyone there to be straight with me and not drop any sudden surprises in my lap, especially when my mind is focused on other things that are more immediate. Hopefully it'll be better today.

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.

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.

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.

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.

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.

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.

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.

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.

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,

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. 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!