Mom's stubbornness is confounding to me...

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.

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.

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.

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!

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.

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.

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?

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.

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.

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

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.

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.

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. :(

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.

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.

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, 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.

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.

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!

Thanks much for the very helpful replies. I genuinely thought she'd bounce back a little but right now I just don't see it happening. The physical end of her situation is troubling but the mental side of it is much worse. Although I made promises to her about this I just can't see how I'll be able to manage it on a daily basis.

I found out for myself after an injury, if you don't get that part of the body moving [hands, arms, shoulders, legs, feet, etc] the muscles will start breaking down within a couple of weeks. I broke a shoulder and now I face months of rehab to try to bring my arm back as close to normal.

Sounds like your Mom is running into that same problem.... by not using her arms to do things for herself, now those muscles fatigue trying to even lift the arms so she can eat, or brush her teeth or even comb her hair. Even reaching for something will feel awkward so she will spill things.

Is your Mom in any type of continuing pain? That will exhaust a person, too, and create a brain fog. How well I know.

You mentioned wanting to be your Mom's full time Caregiver.... really?... have you thought this completely though? You will be doing the work of 3 shifts of Caregivers, 168 hours per week with no breaks at all. Are you ready to bathe your Mom, help her to the bathroom numerous times, or if she needs Depends to change her?

If not, you and Mom will need to figure out a way to hire at least a 1st shift and 2nd shift Caregiver. You could do the night shift, but be ready for limited sleep.

D, there are two things you need to do, I think. One is get mom to a neurologist who can do an evaluation beyond the "tell me what day it is and count backwards by 7s. The other is to get her qualified for Medicaid. From what you're describing, she's not going to be able to return home without 24/7 care. She's going to need to be in either a NH or Enhanced Assisted Living situation.

I did neglect to mention that you will have to pay all the upkeep on the home if your mother is on Medicaid. That includes any taxes (if they are owed) and insurance. But at least you will not be without a home and you'll be close to your mother.

dmanbro, this does sound like pretty serious and selective dementia. I have heard about symptoms where skills, e.g. knowing how to use a cup or spoon, is lost. I still suspect that there has been some damage done in her brain, such as happens with a stroke. She doesn't realize that she can do things.

I am so worried about you and the situation. You do not have to sell the house to pay for her care if you are living there. You can apply for Medicaid and the home will not be counted as an asset until after your mother dies. Don't worry about that if your mother needs to go in a nursing facility. This may be more than you can personally handle. Huge and big hugs.

Earlier in the week it appeared that we were making some real progress. She got into the chair, went outside, she even did a little light PT work that gave me some encouragement. I normally tend to be an optimist and I've been giving it my all, but over the last two days my hopes have been dashed pretty badly. She's not panicking quite as much but she's just flat-out complaining more than ever and mentally she's a train wreck. She'll resist two people trying to sit her up with amazing strength, she'll hang on to the bed railings with a death grip, then she'll bellyache about how she's "too weak" to lift a spoon or a cup and she'll say she "needs" to be fed by someone. Even worse, she'll just seemingly forget how a cup or a table even works, spilling drinks all over the place and dropping everything even though the table is literally inches from her. And trying to have a conversation with her right now is totally impossible. She'll do a cognitive test and answer every question, then she'll babble and drop weird non-sequiturs out of nowhere in a half-asleep daze. Several aides (and even her roommate) have asked me if she's on some sort of potent narcotic drug because it's exactly how she acts, but she is not. And now I hear that she's waking up in the middle of the night, crying out for people or things then immediately falling back asleep before the aides can even get to her.

And on top of that the fully-covered part of her stay is nearly over and at the end of the week the giant co-pay part of her coverage kicks in. We can fund a week or two up front but after that, unless they'll work with me on some sort of payment plan, it's either bring her home or give up her only asset, her home. Which is another huge worry for me as for the last few years I've been living and working from the house and right now I have absolutely nowhere else to go.

I'm feeling as guilty as hell for feeling this way too. I mean I could handle taking care of her full-time but if she's going to remain like this (or get worse) it'll be pretty brutal. The suddenness of it all has really caught me off-guard, as just barely two months ago she was still pretty normal and functional but now she's like an infant and honestly it's jarring. I didn't hesitate to move in after my sister died as I felt it was my duty to her and plus I'd have a decent place to live and work and now in the span of one month it's all falling apart. And I have no idea what happened, either, as she hasn't been given a diagnosis that at least establishes why it all went so south so quickly.

Thanks all, it was really nice and good to see. Yeah, the panic was there but it was manageable. I just couldn't wait anymore, had to break through the procrastination today. We're going for it again tomorrow and hopefully it goes even better. I think that once she realizes she won't fall out of the chair she'll relax and eventually forget, at least to a degree. The therapists were a little hesitant at first but I convinced them that I could get her off the bed and into the chair safely, they were a huge help too.

Good job!

All hands and paws are applauding here. Way to go, dmanbro! This was a huge step, IMO.

Well today I decided it was time to push the envelope, so to speak. Typical morning, "blah blah blah, maybe tomorrow" and so on. PT arrived and I just said 'follow my lead here". I got her to hold on tight and lifted her up and boom, into the chair. "I'm gonna fall, I wanna lie down, help meeeeee!" and so on. So I answered every complaint with a counter. "You ARE outside! You ARE sitting down!", every "no no no" with "yes yes yes". And we ended up spending an hour and a half cruising, eating ice cream and finally DOING something. It was a small step but a forward step nonetheless, so I feel like it was a fruitful day. Finally.

Dmanbro; that's EXACTLY what was going on with my mom, both when we discovered the broken hip (second xray) and the compression fractures in her back. Dementia patients can't locate pain. My mother finally managed to tell me that the pain was in her back, which led to a confirmatory xray and lidocaine patches which have been quite effective.

I'm curious if your mom was a manipulative person BEFORE all this. My mom was not. Depressed, anxious, yet, but never a manipulator or a malingerer. So I was CERTAIN that there was real pain and the problem finally got solved. The broken hip was ascertained by the PT who was working with her who realized that she wasn't bearing weight on one leg.