I've posted before about in-law care-giving. Aged mother in law, lives in same town.
We are at the tail end of a visit from sister in law from several states away. Sister in law has been here for 3 weeks caring for her mother. A much welcome respite.
It had been discussed, prior to her arrival here on the scene, she would be talking it over with her mother, to try and get her mom to come up to her home, for a stay of maybe a few months.
This, in my opinion, is absolutely essential, as I am expecting twin grand-children, due in about 1 month (if they don't come sooner, as is the case a lot of times with multiples pregnancies). The expectant mother also lives locally here, and has a 4 year old daughter. I will be on that front, helping .. as much as is needed. And not on the front with mother in law and care-giving, and have made that as obvious and apparent as I know how to make it. It would be great if mother in law would agree to go to her daughter's home (several states away) for a period of a few months .. and allow me the latitude to put my energies where I want them to be, on my daughter who will have had a c-section .. and my grand-daughter (4 years old) and new twin babies.
Nothing doing. Mother in law has dug in her heels, and will not hear of it, going to stay with her daughter for any period of time.
What are her reasons?
In mother in law's defense ... her daughter ... I don't even know how to describe it. I will say that when her daughter comes here to visit, she all but breathes for her mother and if she could find a way to do that, she'd do that too. She is the most nervous nelly, never sit down - ever ... worry wart, do everything, all the time .. person that I've ever encountered.
A great example, as I was taking her to the airport yesterday for her departure, . I reached into the fridge to grab myself a bottled water and shut the fridge and turned to walk away, as I've done for all of my 50 plus years living on this earth .. and she said to me, "Oh make sure that fridge shut". WTH???? Like I don't know how to shut a fridge? That's just a small, very small slice of what she is ... how she is.
She is so very hyper-vigilant, seeing to every minute details down to it's finest most minuscule point, fine tooth comb, questioning every point along the way, "should we do thus and so, but maybe if we do thus and so, then such and such will happen, maybe we should do it thus and so .. but then so and so might happen, maybe we shouldn't do thus and so, but do "x" "y" and "z" instead, but if we don't do it that way then ..........", on and on and on and on it goes. And usually in hyper warp speed, as to every single friggin thing.
If her mother moans .. "what's wrong mother?, why did you moan, are you alright?".
Mother: "Yes, I'm fine, I was just sighing out loud".
Sister: "Why did you sigh? Are you hurting, are you sure you're alright, why are you sighing what's the matter?"
Mother: "For God's sake __________________, I was just sighing, .. calm down, I'm fine".
Sister: "Are you sure, .. because if something is wrong you need to tell me".
Mother: "Everything is fine, I'm fine".
Sister: "Are you sure, we did a lot yesterday, did we do too much, maybe we shouldn't of gone to two doctors in one day .. was that too much for you, are you too tired now, maybe we need to move those other doctor appointments so we won't have two in one day, is that too much for you, for one day .. is that why you were sighing .. what's wrong, are you sure you're alright".
Hopefully that kinda gives a little bit of a snapshot of what goes on when sister is in the ring directing things.
So in mother in law's defense.. I do get it, why she wouldn't be chomping at the bit to go to her daughter's home.
BUT ....
The only experience she has with her daughter, in the last years as mother in law has aged and been unable to go anywhere much, has been the daughter coming here, periodically, for periods of about 3 weeks at a stretch. When her daughter comes here, she moves heaven and earth for her mother and then some, and doesn't sit down, doesn't stop .. the WHOLE ENTIRE TIME.
Is there a possibility maybe (as I said to mother in law, when she expressed that isn't happening - talking to me - her going to her daughters .. ever) .. could it be possible that maybe if you would go to where she lives .. she'd be more busy managing her own life in that setting than your's and she would get out of your backside .. and not be as hyper-drive-vigilant as you experience in her, when she's here, could that be possible.
The daughter is retired, lives several states away. Does come here, generally, every few months .. and stays for a period of about 3 weeks at a stretch. I wish I could make a list of everything the daughter did when here this last time, but it would take up the whole character allotment:
Look, of COURSE it's possible that the ADs are causing the diarrhea. But she's got diverticulitis. And a recent impaction. And ongoing loose stools. A GI doc would say, let's look at that.
Adding that up, it feels more like an ongoing GI issue and not a reaction to a med.
And remember that it was a uti and diverticulitis symptoms that brought MIL into rehab to begin with.
And because he's an inlaw, we don't really have issues. I appreciate that. I actually get along with him better than I do his wife--my YD. :)
The reason everyone medical is being upbeat about MIL's return to health is because THAT'S WHAT DRS AND PT & SW's DO!!!!!!!!!!!!. It's kind of their JOBS. They don't know what's down the road, they are ALWAYS giving the next option or treatment, it's part of the "deal".
When my grandmother ended up in a NH, 95 yo, two broken wrists, dehydrated, open wound in the base of her spine so deep you could see bone---unable to swallow or stand--the PT folks were there every morning, bright and shine "OK Alice, we're going to get you up and trotting the halls today!" to which she would pithily reply "go to He77". Actually, pretty hilarious, knowing GG as I did. She only lasted about a week in the NH. We had no wild assumptions she was going to come back from the fall---and we encouraged her to "go". She was "seeing" grandpa all the time and I asked her how he looked and she replied "Oh, he looks wonderful!" Mom and I told her that the next time she 'saw' him, to ask him to take her with him. She died the next morning.
Point being-she was actively dying, we knew it, she knew it, the NH and drs knew it, but their job was to try to get her up, fed, etc. It was kind of ridiculous.
Poor SIL, she's buying in to all the hoots, bells and whistles. Is MIL cannot stand up again, then she will be bedbound. PT will quit trying to walk her--she'll get bedridden PT, which is not about getting her to walk. End of story. Life from there will be truly miserable.
She has so many co morbidities--it's amazing to me she is still alive.
They can, and will treat everything that pops up---and she will have a lousy EOL. I wouldn't want any of this for anyone I loved.
I really think bringing up palliative care/hospice may be just right for now. She's the one in charge of it. Why is everyone so scared to say anything about it to her?
In my state, there must be a doctor referral for hospice in order to qualify with medicare. (as far as I know.) And we were told it depends on a doctor's reasonable judgement of approx. 6 months left to live. In our case, it was the doctor who brought it up and recommended hospice, due to the CHF. It was then started immediately - with extra care, minimal meds, and no P/T. Of course, everyone has the option to discontinue it at any time, and request treatment, and people have been known to recover and leave hospice and live for some additional years. Also, patients are allowed to have pain relief as needed, again, at their option if lucid enough to decide. In my case, my mom rejected pain relief until the last day or 2, as it really addled her mind, which she hated.
I do think everyone would pay attention to the idea of hospice IF it was brought up by a doctor to SIL and DH. It could be presented to MIL a bit later. But somehow someone needs to directly ask a doctor about this consideration and find out about the possibility and details. Can't hurt to ask.
I can suggest that."
Maybe it's best to let SIL/H and POSH figure that all out. You don't want to be seen as too integral a part of figuring it all out, as you won't be doing this when SIL leaves for IL. If you are too involved now while she's here, how is it going to seem when you totally step away when she leaves?
Remember, you want to be her visitor and to bring her treats (and maybe an occasional supply -- seems like you may already be the diaper/pullup supplier?). You don't want to be in there with the medical staff trying to figure out what's going on with future (or continuing) issues. H will be crying in a corner over the sadness of it all, and it will be up to you.
Start setting those boundaries now while SIL is still here, particularly in regards to figuring out MIL's issues.
I do not think that it is up to the patient's family to suggest what the doctors should be looking into. Or suggest what medications a patient should or shouldn't be on.
I think the patient ( or her ACTUAL @#&% family members) should ask broad and open ended questions about the state of their mom's health and what investigations/therapies/medications are available.
Of course, giving an accurate medical history is part of this scenario.
Just bring up hospice, Dorker. Many doctors will NOT bring it up until the family does. MIL's family is scared to do so. Help them out.
The worst that can happen is that the doctor says "no, it's not time for that yet".
I have, . .as I've always done throughout, even back when this began .. I try to talk to the offspring . .and persuade my POV as to what I'm seeing, .. have mentioned Hospice, to both, more than once.
As it's always been, nothing changes .... one might would hope (as I did at one time, that they'd see what I was referring to, that she his not managing, they didn't see it, nothing changes) .. one would hope .. they might would, entertain the notion of just a discussion with the docs . on what has been mentioned by Dorker .. it doesn't happen.
As I said before, they hang on every shred of positive news in it all. As I described before in another post .. they hear that their mom . her day was "okay" ... and "okay" . for her means, she isn't wallowing and lost in misery and despair ... and she actually was able to participate in PT .. that .. to them is an "okay" day in which we hang our hats on . in the hope that things are turning for the better.
They hang their hats on .. as mentioned here by others, the SW, the PT .. the doc and their words, .. "this is all about like it goes . she's gonna have some health issues at her age, but we're addressing those . .she's going to have struggles as she comes to grips with her new reality . that's to be expected as she comes to terms with it all".
They hang their hats on those two factors . .and any mention over here from Dorker, of .. "ya know guys .. maybe we need to be checking with the doc and having a discussion on whether or not Hospice is an option that needs to be looked at". That notion . that gets tossed to the the wind, in the above two factors.
Sadly .. on the other end of all this is the frail old woman that is .. struggling just to maintain . much less even try to rehab .. and all the while so many other issues at play in it all. If it were me, my mom . you bet .. I'd be behind the scenes getting the low down on that dialogue and then maybe in conjunction with siblings have some discussion on it.
Doesn't happen here. In order for me to get that on the table for discussion with an MD ................ I'd have to take the initiative . it's not going to happen between these two .. as it's always been. When I used to shout from every roof top that she is not managing . and needs more help. What was their answer to that, as seen here in the 7k posts .. they ignored me .. and went on as if nothing was wrong. Continues, nothing changes.
The one thing I haven't done, that I will do, ... is to mention it to dementia brained MIL. I have .. at one time, tried to open that dialogue with her, at her kitchen table, before departure to IL. But expecting her to have any executive functionality of connecting the dots and what it all means . .is about like expecting my 2 yo g'children to have the wherewithal to do so. It doesn't happen.
Before she left for IL .. and here and I sitting at her kitchen table, and her lamenting the whole plan to have to depart for IL . and wringing her hands, "this is all going to kill me, I won't survive this .. I don't want to have to leave my home, my things .. my memories here .. it will be too much .. ".
I mentioned to her, at that time, .. Hospice/Palliative care .. etc.
To her responses: "Ya know, I just want that cloud to come for me. I wake up every morning and ask God why am I still here".
To my responding: "ya know .. I understand .. it is hard .. I get it .. and if you want, we can certainly talk with your doctor . and maybe consult with some Hospice or Palliative (explaining to her what Palliative care is) ...
To her responses (more of the same): "Ya know I wasn't gonna get old, this wasn't gonna happen to me
And it's all just taking me down, I can feel it .. I can see it and there's nothing I can do about it".
Me: "MIL if you want, we can talk to your son and daughter and have some discussion on it all .. and maybe decide if Hospice or Palliative care is the way to go" (handing her a brochure I'd picked up on it all for her to peruse).
More of the same. It doesn't . and didn't at that time, compute with her .. to the point she was able to follow the bouncing ball and come to any conclusion on it.
I gave up.
Now what I have not done is bring it up to her .. (I have to her offspring, more than once, several times) .. I haven't brought it up to her anymore, and I think doing so will be about as fruitless as the above was.
The next time that she starts on that path .. as she always does .. "this is all not how I want my life to be .. fight back from all this for what .. to go sit in a nursing home somewhere .. I don't think I can fight back this time".
I will bring it up to her .. "MIL you remember, .. I talked to you at this (she probably won't remember, she doesn't remember a lot) .. at one time .. and we talked about Hospice care .. ya know .. remember back when J (her husband) was so sick . and the hospital told you guys . he either has to go to Hospice or Rehab .. because they'd done all they can do for him. We all knew, he was no candidate for rehab . he couldn't even stand up .. and was out of it mostly . and so you guys all opted to bring him home .. and you guys thought .. you thought for a minute anyway . you'd bring him home and nurse him back to health . but you got him home and within a couple of days realized it's going to have to be Hospice, . he can't rebound . and so you guys brought Hospice in .. and had to let him go .. you know . with your situation . that's something we can talk to the doctor about if you want".
I will say that to her ... but I suspect the dialogue will go about like it did before, maybe worse (her memory is sure worse than it was at that time).
I can .. sure .. if I want to allow those boundaries I set . to be broken ... I can hunt the doctor down and talk to him myself (I'm sure getting nowhere trying to persuade her son or daughter to do it) .. But I just don't want to be that vested in it. I don't. I've seen where that's gotten me, a whole lot of frustration.
I am, at present, .. I go there a couple of times a week . and I bring along .. maybe a meal that I cooked here .. (red meat, . she needs red meat to fortify those hemoglobin #'s) .. I bring along something I picked up as a take out, . or order for her those .. special baby wipes as I did.
Outside of that, I'm not going to get that vested .. in what the ins and outs are as to her care. I can't.
I see it .. believe me .. on the other end of all that is a frail old lady that maybe should be given that option .. and it should be discussed and that path actually taken .. I see it .. clearly.
But I'm dealing with her offspring . her son who .. as it's always been .. is busy w/his responsibilities .. and tunnel vision of that. He goes to see his mom, generally either starting his day there (which is an improvement from what used to be) . or ending his day there . one or the other .. but .. he doesn't "engage" as to the health issues and take any initiative at all, as it's always been. Even though he lives with and sees Dorker, hears her . "hospice, hospice DH . Hospice". It doesn't register with any actionable walk forward to that path, in talking to his sister on it, talking to his mom on it, .. questions to me as in .. "ya know, let me have that doc's phone #, I think I want to at least check on that". Nope.
I'm dealing with his sister who hangs on every shred of any positive news ... as in the SW, PT, Doc . etc .. "this is all to be expected, we're working on it" . .and onward she marches to the next thing she can then manage as to whirligigs . and so forth.
Does anyone think that Dorker herself should track down the doc and ask if hospice care is appropriate?
I am just N.E.V.E.R. ever going to get that engaged ever again.
Remember the times I Hauled her to the cardio doc with edema (her failure to take her Lasix) and her then lamenting that it makes her have to go to the bathroom, struggle for her, so her answer was to just not take the Lasix . and them cautioning that she needs to then wear support hose . and my offering to take her the DME and let's get those support hose, let's find what kinda apparatus they have there for those with arthritic hands to be able to put those on and off, let's get a CNA assigned to help with that . and her .. "no I don't want all that" and refusing to do so . and in circles we'd go .. SIL telling me . directing me from afar .. "she's got really really swollen feet/ankles again . can you go check on her, I think she needs to be seen at doc" . and my carting her again and again . and telling SIL .. "it's no good for me to keep doing this . she needs to either wear the damn support hose or take the Lasix .. " and SIL with her, "I know she's just so damn stubborn I don't know what to do with her".
That just one of so many scenarios. I will n.e.v.e.r. ever get that vested again .. I won't allow myself to do it.
So SIL and DH don't wanna entertain any dialogue on the above .. opting instead to stay busy .. opting instead to hang on every shred of positive news (though I debate any of it as positive) ... I can't change it. I know that.
And subject their mom to all this, when in the end, . maybe it's all for naught . it's their mom.
Just as an aside, let me mention .. the visit the other day where I took her some chicken salad. I pushed the fluids while there . as we've been instructed to do . and it's well known .. left to her own . she doesn't drink . she just doesn't . it doesn't occur to her .. how much the staff is doing so and checking on her, I've let it go .. I have to. I can't be there to micro manage staff and I won't be . and so how much of the fluid pushing gets seen to absent any of us there ... and left to staff to do so .. doubtful. I was pushing the fluids, handing her the water cup . every few mins . and she'd take a baby sip or two . but that's about it.
Her lamenting as I'm handing that cup to her over and over, .. her saying these words: "You know, I drink this water . .and then I have to pee . and it's such an ordeal getting up to pee .. I mean .. I have to call for help and then wait for them to come and sometimes they don't come in time . .. but if they do . then it takes two of them to get me into the wheelchair and into the bathroom and then get me up out of the wheelchair and onto the potty .. and then .. I have to wait for them to come back . .. to get me up again . it's all such an ordeal".
Me: "Well remember MIL .. the more that you do, .. even with them helping you .. coming to get you up and out of the bed .. the more you have to do . the better, it strengthens you . laying here in the bed .. isn't good .. the more they have to come and get you . the better in the end, as to gaining some strength .. and that's good. Do you need me to call them for you . you have to give them time to get here, you can't wait til the last minute .. I'm handing you that water cup all the time . do you need to go to the bathroom, we can call them".
MIL: "No .. I know .. oh I know . if I need them I better be calling because it takes them forever to get here".
Fast forward to later in the visit
Me: "MIL do you need me to call them, do you need to push that nurse button? You've been handed that water cup over and over, do you need to go to the bathroom".
MIL: "Oh it's such an ordeal to have to go to the bathroom".
Me: "I know .. do we need to get them .. don't wait too long".
MIL: "Oh it's so horrible, this is all so horrible to have to wait for them".
Subject changes.
Fast forward a bit later and I'm saying my goodbyes and here is what is said by MIL.
Mind you, I've been there now, like 3 hours or so and not once has she taken me up on the offer to call for help . to go pee . not one time. Even though I've been routinely shoving the water cup at her.
I'm now saying me g'byes.
MIL: I'm going to have to call for them to come help me up to the bathroom here, I've sat here all this time and pee'd and pee'd in my diaper.
Me: "Why? Why didn't you call for them to help you?".
MIL: "oh it's such an ordeal . I just want to get to where I can get up on my own and go to the bathroom".
I didn't even go there .. I just pushed the nurse button to her asking rather incredulous like, "What are you doing? Why'd you push the button?".
Me: "Because you said you need help to get to the bathroom . and that you'd sat there and pee'd and pee'd in your diaper . they need to clean you up.
MIL: It's such an ordeal . I just want to be able to get up on my own and go when I have to go
I didn't even stick around to see that they came, just assured her that I'd pushed the button and they'd be along shortly.
As I was leaving a CNA was arriving to take her vitals and I asked if she was there to clean her up and she said yes. I left.
Now let me tell you how this dialogue went when related to DH.
Told him of the above and the repeated discussion with MIL .. prompting her to ask for help if she needs to go to the bathroom.
DH: "See, she's not right in the head anymore, . .why would you choose to lay there and pee on yourself . why would anyone do that . here you are reminding her . and she still .. it doesn't compute with her .. all she can do is talk about how hard it all is . instead of being able to think about (and I would debate .. sequence) . what she needs to do, call for help . and get into that wheelchair and go to the bathroom, she's not right in the head anymore ..
Me: DH it may never return . her ability to be able to think about and sequence what she needs to do . we know damn well that she's been coached over and over as to the importance of hydration . but if no one is there to push it . it doesn't get done . much as you see with pee'ing . same thing . she just sits there in her diaper and pee's . even though coached .. I say to you that all this is so hard for her . and maybe it's insurmountable . maybe that's why we need to at least be talking about Hospice . and visiting that idea".
DH: "I hate all this for her .. I just hate it".
Does he then say something to the tune of .. "ya know, what is that doc's name so I can get ahold of him and at least talk about some of this".
Nope.
Does he say . "ya know me and sister need to really talk about this".
Nope.
Does he say, .. "yea I think you're probably right . maybe we need to look into it".
Nope.
I drop it.
As another aside .. SIL had gone yesterday . out of town, . had to go find a branch of her son's bank . we don't have a local branch of that bank here . had to go handle something for her son . banking. She'd driven about 2 hours south of here to do so . and I had tried to encourage her, since I knew she'd be taking B with her .. and since I know that B spends most days . all day .. in that home, taking care of Poochy that's his job . while SIL flits about to see her mom, and/or to go and take care of other things . and he's stuck at home. I had tried to encourage that she go on yelp or something . .go find something to see there, . maybe a nature walk, .. maybe a museum . go have a nice lunch .. go spend a day just enjoying something.
I had hoped she'd do so.
But then I got a text from her late yesterday afternoon . when I was here with baby sitting duties . and she was back from her travels to handle her son's banking affairs . that they had rushed thru that so she could get back to .. (get this)
Pick up the tulips at MIL's house that she'd bought at the grocery store the day before, purposely to give to MIl .. wanted to grab those before they open . potted tulips
Having said that, I've just got a twitchy antenna - have you observed the aides taking her to the bathroom? The thing is, if you're dying for a pee, plus you have to wait, plus the aides are grumpy, plus the being hauled out of bed and getting to the bathroom can be rough, plus the draughty btm, plus the cold loo seat, plus the post-op soreness and stiffness - these are all cumulative disincentives. I'm not saying there's a solution, but it might be worth having a careful look at where the rubs are, and seeing if any of them can be smoothed out.
She had gone the day before to the grocery and picked up a potted plant of tulips purposely to give to her mom for her windowsill there at Rehab .. wanted to grab those before the bulbs open to deliver to her mom.
She'd bought for her and B for dinner that night, a box of fried chicken wings . and so wanted she and B to get back and have some of those before they get too old .. as leftovers from the night before, and throw a few in a bag to take to MIL . and so she was texting me . now back on the scene at MIL house, to grab the tulips and the chicken wings and heading out to the Rehab to see her mom.
This was at 3 or so in the afternoon. She said that B asked her, .. "don't you just wanna take the rest of the day and stay here and rest".
I don't know what she answered to that, but obviously not what she was opting to do.
I asked her . had she talked to her mom at all, on her travels. She said she'd talked to her on the phone early in the AM before she left, but not since. Said she was heading on up there . with tulips and chicken wings.
Later she texted to say that she helped her mom . encouraged her to eat .. and that he mom hadn't been able to participate in PT in the AM . that she didn't know why specifically . other than her mom said "something went wrong and they weren't able to take me to PT". She didn't know why.
Said she visited with her mom for a few hours, coaxed her to eat some, drink.
And then said this:
SIL: "And damnit I forgot to ask them, I have a call into the nurse, I've already left .. I forgot to ask them about that midline IV they put in . when are they taking that out ... they had said when they put it in . that it can stay for a week or thereabout . .. I put in a call to the nurse . but got no answer .. they didn't answer at the nurse desk . when are they taking that out, .. tomorrow will be 10 days that's been in."
I didn't answer the above, was busy with babies.
Then she texted again in a little while: "Just got off the phone with the nurse who said she'd check with the doctor on that midline IV thing . whether he still wants it in . maybe to hydrate her or whatever. Damnit why do I have to stay on top of all this . they should be doing this stuff without me having to stay on top of it, I feel like I have to be the one to ask these things or it doesn't get done".
I didn't say anything .. didn't respond. My thoughts . .. tried to tell ya this POSH place is crap . whatever. But I didn't respond at all.
If the answer is yes, when DJH says " I hate this for her" you can say "then call hospice. Here's their number. She is suffering needlessly"
Dorker: "...so you guys all opted to bring him home .. and you guys thought .. you thought for a minute anyway . you'd bring him home and nurse him back to health . but you got him home and within a couple of days realized it's going to have to be Hospice, . ."
Be careful here. MIL is going to think that hospice would mean that she would get to go home, too.
BarbBrooklyn: "...when H says " I hate this for her" you can say 'then call hospice. Here's their number. She is suffering needlessly.'"
Yes! I like this idea! Stop trying to say anything other than the above about hospice. Make this your automatic response to his whining, "I hate this for her" all the time. And say nothing about hospice to either of them.
The way they are, enmeshed in MIL's happiness in such an extremely dysfunctional way, I don't think they will ever agree to hospice anyway. It would seem to them as if they would be hastening their beloved special (above all others!) mother's death. And they can't deal with that. And neither of them is going to do the psychological probing/counseling to figure out the causes of this dysfunction and (more importantly) what they can do to change it.
Remember, Dorker...NOT YOUR CIRCUS NOT YOUR MONKEYS. We are all rooting for you here. YOU are the one this message board is concerned about.
Yet again.
Talking with SIL this morning who is en route to POSH to visit her mom.
SIL: "Ya know, when I was there yesterday I got her to eat some of the chicken wings I brought . but she just doesn't eat much .. I asked her about that and she said .. ya know I think all this is so deeply ingrained .. she said the whole eat to live or live to eat .. that was one of her mantra's through the years to combat being overweight . that one has to eat to live . not live to eat . and she said .. she was trying to decide if she just wants to quit eating .. entirely . and not live. I told her, .. well we all hope that you would decide to live . but .. that's up to you . only you can decide if you don't want to live".
Me: "yep .. that's why I keep harping at that Hospice piece of all this SIL .. that's why I keep bringing it up . you guys won't know if that's even an option unless you talk to the doc about it .. if she questions whether she even wants to live and GOD KNOWS SHE DOES ............. then ........... at least get the ground work covered in talking to the doctors".
SIL: "Well, for now . she's at a straight Rehab place, if she throws in the towel there, . she gets ejected .. she has to not say that, not there at POSH . she can't .. but once she gets to LTC .. if that's the choice she wants to make . then yea .. but not right now".
I dropped it.
Fighting thru a brick wall . no point.
I agree with CM about the discomfort of having to be taken to the toilet, having to wait, etc. It's almost like she's saying, "Forget that, I'll just pee in my diaper when I need to go." Or, "I won't drink so much of this water so I don't have to pee." Just thinking about her immediate discomfort, rather than the long term effects on her health. Which is why she really and truly needs LTC imo. She truly doesn't have the executive function to connect those dots as you've said.
But again about the laments about not wanting to live, I think the best response is a sympathetic nod, "I know it's hard", etc. and as SIL said, "That's up to you."
Sure, if the cloud appeared to pick MIL up I think MIL and DH would be fine with that. SIL who knows.
Even if MIL had all her faculties I don’t think she would sign herself into Hospice at this point. Just her personality.
DH and SIL. Could they sign MIL into Hospice? Guess it depends on the type of POA they have. And if they could, would they? Maybe on a Drs recommendation.
Another question of course...IF MIL, SIL and DH decided it was time for Hospice, I am assuming that is not an option at POSH, is everything set up and ready to go as far as Medicaid for an early transfer to LTC so Hospice can be brought on board.
Like all things MIL it’s a mess. POSH says they are trying to get her better so that she can rehab, that’s their job. Well, out here in Cyberland I don’t see that happening. The too low BP isn’t being explored unless they have determined it is dehydration.
So, MIL is already in purgatory. Problems not really being explored(I am not saying they should be) and not having the benefit of Hospice.
I'm sure part of SIL's thinking is precisely that. Let's keep her at POSH in her private room secluded away from the commoners and that scene.
However, SIL knows as do we all... LTC comes a callin with an open bed, be that today or whatever, gotta jump.. lest you miss the opportunity. Would be interesting to see if Purgatory pops up with another quad (SIL already declined any quad.... and remember DH with his "if that's the best they can do I'm picking her up and taking her home). No a quad will never suffice.
And further ... not sure why a world where slumpers exist even matters. MIL has no problem engaging with staff in and out <young folks>. Has zilch as to desire to leave her room and/or engage with other patients and programs there. None.
Why it matters ... her going to LTC .... for someone who isn't about mixing with the commoners... I dunno. Maybe <gasp, horror> those commoners will be on exhibit as MIL <all but a slumper herself and that may not improve> as she's wheeled around for shower or PT or meals.
Yes .. keep her at POSH ... as long as possible.
Ahh .. let's hope LTC doesn't come a callin with that semi private she has to take when it's offered.
Doctors treat people. They hear what the pt says and they order tests and they treat them. Dying people. People who can live another 3 weeks in agony and misery b/c they WANT it, or their families (through the POA) want it. Used to frustrate Dr SIL until he just "quit" caring for his patients as much. Not to make him sound callous, as he is as far from that as can be...but he said "if people are bound and determined to be non compliant and do anything and everything possible to stay alive, then we do it. My 'opinion' is just that...an opinion.'
I DO feel for MIL--she has long outlived her life, So sad. Sooooo sad.
But.....
It's not just time for palliative care/Hospice...it's months past due. Just MHO, but I cannot, just cannot see her coming back from this broken hip with ANY QOL, and I don't care how much SIL cries and fusses, I don't care how SAD DH is from time to time...she's wearing EVERYONE down to nubs.
An epiphany from last night: (Up sick all night with the rotten cold the kids brought from VA with them!)
You have "X' number of Drs. weighing in on MIL's care. It's as if each person in this scenario is holding a piece of a huge puzzle. They are NOT working together to put this puzzle together. They aren't even aware they HAVE the puzzle pieces.
IF (big if) you could get the entire crew of CG's in one room and have a roundtable about MIL's care, and Drs. would bring up the HORRIBLE concept of Hospice...you might get a plan of action. What is going on now is a jenky mish- mash of medical care. MIL still wearing a diaper and preferring to pee herself, even thought YOU WERE THERE and could have called the nurse??????????? That's telling--she isn't the least bit on board with getting 'well'. She just wants to bitch and moan about the stupid cloud and drive everyone insane. (Although, not aware of it, sadly).
She has a semi-permanent IV for hydration??? She still can't remember to drink? Will a NH let her in with a high maintenance IV necessary for life?
And you guys are seriously WONDERING if her CHF could be causing the low BP? Um, YES, very much so. Congestive Heart FAILURE. Plus chronic dehydration..plus the inactivity. Plus malnutrition. She lays in bed all day now, right? There is a point at which everything just goes south. You all are fighting a sad, losing battle.
Yes, It is HARD to make that decision. I get it.
Dorker, I think that you do need to step away again--once again, nobody is listening to you. How irritating. I know my kids ask my opinion and I usually say "I don't wish to offer one. You don't care what I think". They just want to 'blame' me if they actually DID what I suggested.
YOU cannot facilitate ANYTHING. You're back to monkey wrangling. This could ostensibly go on for months and months (though I doubt it).
When my mother pulls the "you know if I just stopped taking my insulin and went to bed, I'd be gone in a week". "Yep, mom that's right. Is that what you're ready for" (No emotion involved on my part, just agreement) What she wants is tears and emotion and begging to stay with us longer. She has a very poor QOL and if that's what she chose to do, I'd be fine.
To the very bitter end, MIL will play the queen bee. Despite the scatterbrained thinking, that won't change.
Just--how much can everyone take? How much can her poor old body stand?
Just keep your head down and keep the mantra going of "she needs so much more care than any NH can provide. Palliative care can." One of these monkeys will wake up and hear you.
Honestly, it would be a blessing if she fell again. A 2nd broken hip? That would be the end, truly.
In my heart of hearts, I have felt for MIL, who has been able to manipulate and coerce her family into care far beyond anything I personally could ever dream of having.
She's been abundantly blessed--and doesn't see it. So sad.
I agree, MIL should have been on, at the very least, palliative care a long time ago! There comes a time when you have to stop trying to FIX everything. If they were to fix chitapalooza tomorrow, something else would pop up needing to fix. It won’t end until the cloud takes her. We just went through a 4 month cycle with my FIL where one probably would pop up and soon as they figured out what it was and started treating it, a new problem started. When the low blood pressure began, the medication they put him on to raise it, caused another serious problem-I think fluid on his lungs. Took forever to get it all balanced out. I am happy and sad to report that on Wednesday, the decision was made to stop all treatment and get him placed in a LTC on hospice because he is not going to get better. Happy because he will be placed somewhere and comfort care will be provided and he won’t be subject to chemo and lots of tests and bouncing back and fourth from the hospital to rehab. Sad because we just lost MIL 10 months ago. A year ago at this time, the thought never crossed our minds that we would be putting FIL on hospice and preparing to say goodbye. Him coming out here was supposed to be our chance to have him as part of our lives after all these years and now that’s out the window. I think he’s ready for the cloud to come get him though.
I think at 89 years old, it is time to stop fixing MILs health problems. Not because she is 89 and it’s her time go-I am not saying that at all. I’m not saying not to fix anything else either. It is just time to focus on giving her the best quality of life for whatever amount of time she has left on this earth. There are going to be some things that need to be fixed or treated in order to keep her comfortable. But some things at this point, are unnecessary and may affect her quality of life in a negative way.
were I in your shoes Dorker, I would say to the family—what are we really doing here? Is THIS how we want to spent the last years of MILs life? Is this how we want HER to spend that time? We should be doing everything possible to give her the best quality of life & enjoy the time we have left with her. we are going in circles from the hospital to rehab to the hospital and back to rehab. That’s no way for her to live. Let’s get her placed in a nice facility where she will be kept comfortable and we can all enjoy our time with her.
Dorker, I know MIL has cognitive decline but would you be willing to initiate a conversation with her, in SIL and hubbys presence and ask her how she feels about switching to palliative care? No more hospital visits. No more tests. You wouldn’t be pushing for anything, I just wonder if that sort of conversation would cause SIL and hubby to have a breakthrough.
That, of course, implies that the family is looking at the long view (as is the patient) and they are all realistic about what can and can't be done. I will always remember when my mom called me and said "they want to do a bone marrow biopsy: I don't want this; what do I do?".
I was on the Verrazano Narrows Bridge when I got that call. I dumped my colleague at the other end and headed to where mom was. And told the folks that were treated mom that no way, now how were they doing a biopsy.
In my world view, THAT'S what caring folks do. Not what DH and SIL are doing, Dorker. Just so you have some direction for YOUR parents.
I'd let these folks dangle in the wind, for sure. You could inquire about hospice, but you're correct. They wont' listen to you.
It's just all so sad, that they won't listen to the smartest person in the room.