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:
Sometimes we have to verbally give our LO's permission to give up the fight. (That sounds callous and I'm sorry for saying it that way--but it's true).
Your dad can and will be subjected to every single test and procedure that the drs can think of to do to him. It's NOT about making money, it's about the Hippocratic oath that docs take to keep people alive...although the first line is "Do no harm"...that makes me chuckle in a weird way, chemo was hell and they know it. It did plenty of 'harm' while it was curing me.
I doubt your dad could handle 2 more chemo infusions. They knock you down so bad.
Probably time for a serious "Come to Jesus" meeting with your dad. "dad, do you want to continue on with ALL AND ANY treatments they can throw at you, or are you ready for the peace of Hospice?" A hard talk to have with someone you love.
You can't have your brother there to help you with this. I would imagine, due to COVID, and I also imagine that your past relationship with your dad might get in the way too.
How much power does the HCPOA give you? Your dad is still lucid enough to say what he wants, but that sounds like it's nearly over. Can you be tough and loving enough to say "enough is enough"?
You've been a far better daughter than he was a father, I give you total credit for sticking by this man.
All I can offer is prayers for you to make the right choice.
Ssomeone needs to say "there are two choices here. One is that we continue to test and treat for everything that shows up, unless you specifically say "no" ( and if could say no to pulmonary, then he can refuse other tests).
The other choice is to go on palliative care. Hospice is one form of palliative care. He can say no more hospitalizations. No more ambulances. Can he understand that simple choice?
The five questions I’ll post here in case it can help you when you talk to your dad.
I am so sorry he is in such a miserable place with so many problems.
Anyone would be challenged to be fully cognizant going through what he has gone through over the last several months.
“We need to know:
What is your understanding of where you are and of your illness?
Your fears or worries for the future
Your goals and priorities
What outcomes are unacceptable to you? What are you willing to sacrifice and not?
And later, what would a good day look like?
Asking these allows everybody to understand what the goal really is — what are you really fighting for? It’s for a life that contains certain things.”
Sounded like PT guy making some noises about going home.
Who knows? One can't take, at face value, much of what dad interprets that's said.
I told him to be sure next time PT guy comes around .. to have him call me ...
Or not.
If he goes home . it's not to my home .. I have said it as many times as I can possibly say it .. that home is not a safe discharge.
But my hands are tied.
My dad expressing that he too, feels some real reservation on any talk of going home . .not ready .. not able.
I concur.
Me: Dad .. the only way you can return to your home .. is if there is a 24/7 c'giver on site, . and we've talked ad nauseum about how that will ride with your wife. Home is not a safe place for you.
Dad: "Oh I know, I'd have to have round the clock care, for certain"
Me: The last I heard you struggle with xfer from bed to wheelchair and so forth . and have to have full-assist"
Dad: "Oh I definitely can't do that kinda thing on my own . . I have to have help. And if I were to fall ... K can't get me up .. no way in h377 can she do that".
Me: You know my thoughts, you need to be transferring to a site where you can be cared for and home is not that site.
Dad: I think that will ultimately be the end-game, but I can't just do that from here, I have to go home for a little while.
Me: Home is not safe for you, and your wife isn't going to stand for someone on site to care for you ...
Him .. change subject .. and then onto what the PT guy said, as to ultimate discharge.
SIGH
Just had a call from there, to be a part of case management meeting on Tuesday (via conference call).
So he has at least 6 days more there. I suspect they will be trying to boot him out after that, don't you?
Be firm. And I'd suggest not being any part of bringing him home (one time you'd said you would transport him home, even though you didn't think he should be going home).
I think there will be another medical issue that could very well land him back in the hospital before next week's meeting.
Per what my dad was saying to me yesterday (which is what prompted my reaching out to ask the PT guy to call me), .. it was said by my dad .. some dialogue as to his going home.
I have some real trepidation as to that as any plan and voiced that.
Per the PT guy .. dad is now walking (with assist) and walker, 25 feet .. and xfer from wheelchair to whatever .. is with assist ...
PT guy recommends that if he goes "home" it be with 24/7 help ... as he will need assist anytime xfer'ing to bed, toilet, .. out of chair, etc ... and that going home isn't imminent.
Told him .. and he will arrange for same .. have the CM set up a meeting ... and we can teleconference . but going home ... there needs to be some dialogue as to what that's going to look like .. as in f/t care at home .. per my figures is going to run somewhere around $16k monthly .. vs ... placement in a setting .. will be $5k or thereabout ... and some of what his mobility will be .. (unknown at this point) .. is going to be brought to bear in all of it.
PT guy isn't real sure .. not yet .. how far he can get with mobility and ambulating .. saying it may be that he will be mostly wheelchair .. at home . or wherever he goes .. and that xfer form said wheelchair would need assist.
I then weighed in .. "and dad it should be noted, your home would need to be retrofit if that's the case, that wheelchair isn't going to fit in and out of the doorways of your home".
Dad: "I don't want to go home until my mobility is higher level so if I go home .. it won't be until I am able to get around better".
Me: "and that we will have to see, as time progresses here, as to how much mobility can be achieved".
All in all, .. there is to be a CM meeting next week, which I agreed to teleconference in on ..
There will also be a meeting that the PT guy will work to get set up with simply the CM .. and to go over some of the info as to costs/settings ... and his abilities or lack thereof . and what that all extrapolates out to.
On the one hand, I am getting kind of frustrated. Because from the one corner, I have my dad (and ultimately it's his decision) .. and his noise barking from his corner, that he wants to "go home" and (quote/unquote) .. "for a little while, before going to where he will ultimately land".
I know what that means ....
A) Likely another hospitalization . and sooner rather than later .. and .. lack of care from his wife
B) His wife balking at any round the clock c'giver on site
I know as sure as I know the back of my hand the above will be the case.
His beef .. as he puts voice to wanting to "go home for a little while" .. one of the few he voices .. "It won't be good for K for me to just land in some other setting and say to her, .. "well this is where I live now".
To my response of: "You're right, that will be a hard pill for her to swallow and off putting to her and her well being to upend her reality .. that's true .. and I give you that .. but .. but ... you at this point have to consider more, on a weighted scale what YOUR needs are".
I feel like I'm shouting into an abyss. Really do.
He "WANTS" to go home .... and I know what that means ...
His wife "WANTS" him to come home . and I know what that's all going to look like.
What he "NEEDS" however, is to NOT go home . home is not going to be the most optimal setting for him . it just isn't.
I asked the PT guy "and so what do we know as to any improvement on the motor memory that you indicated as problematic".
Answer from PT guy: "It's something we are continuing to work on .. planting the feet properly and the hands .. so as to achieve optimal balance .. and it's a work in progress .. it is progressing . but I don't know . it's just a matter of repetition . how far we'll get"
Dad is living in a fantasy world where he thinks he is going to find the right way to explain to K that they need to move. We know from experience that even when they were both of sound mind and body, it was her way or the highway.
I think perhaps your job right now is find someway for dad to invent a story to tell himself that he needs to go to AL to "protect" K from having the bother of having all those strangers in her home. You need a narrative that makes it about HER convenience and HER needs. That it will be better for her if he goes to AL and K can visit and not have to do all that work. And not destroying her lovely decor with grab bars and such.
So, let's see...we potentially have your father who will insist on going home once he's released from rehab.
K will chase away any caregivers.
There won't be any 24/7 caregiving.
There will be a fall (or worse) in short order, plus the lack of food, meds, water that will be your father's plight under K's care.
There is no POA, no plan in place to pay bills, no will, no executor.
And in the background of it all are the strains of the Covid Cantata...
Pop! goes the home bubble.
The whole conference call .. that whole set up leaves a lot of room for not being able to adequately hear one another. But I guess that's their approach ..
And I do like the option of including K. That also got mentioned yesterday as it got tossed about as a possibility of conference call. Don't know my dad's take on including her, but I'm all for it.
The one drawback in including her, .. is this. If you think in her, . you're going to get
A) participation?
Think again .. she sits quietly and doesn't ask questions and gets annoyed in fact, .. at those that do (myself). Docs/healthcare professionals are "GODS" .. and not to be questioned.
B) her ability to grasp/process, hold onto that which is said in that setting .. not gonna happen either. She has Dementia. I can tell her today that it's July 2 .. and .. 10 mins later she'll ask me, what is the date today? She doesn't "retain" that which is told to her.
I think she needs to hear it, and hear it repeatedly from the pros that he will need around-the-clock care. But .. will that concept stay firmly entrenched in her brain .. the brain of someone who is also ruled by her territorial/proprietary way of seeing her husband. Not much of a chance, no.
I like Barb's approach of maybe selling it from the aspect that she shouldn't have to endure the strangers in her home and the upheaval that will all cause. Maybe that (slight chance) would be a selling point.
But I think my dad is firmly entrenched (and on that point he and I agree) as to how off-putting it will be to her and her reality .. her existence, if suddenly a change in the path forward includes that he no longer resides there .. no prep .. no time to absorb it (not that she would absorb it anyway) ... but ... it will be .. very unsettling to her, to have him just suddenly "what ..?!?!?!.... you're never coming home again ...?!??!". Very unsettling to her grasp of what is reality for her.
One point that will hit her, that she does still absorb and process just quite nicely, is dollars and cents. That concept is firmly entrenched in her brain.
They have made a comfortable (financial) life for themselves ... and partly the way that was done was living like paupers .. and they did do that .. and she does still understand .. dollars/cents .. and spending $ frivolously .. nothing she's ever done in her life. Dollars get hoarded .. that's what we do.
Here's about how I picture that whole teleconference going, in part.
Talk of the costs of varying settings . one of those being in home around the clock c'giver .. and .. the rudimentary figuring I've done on that, gives me an approximate $16K monthly to pay for it .. vs ... a range somewhere around $4k to $5k for montly costs as to a setting such as ALF.
So that gets thrown out there.
That $16k figure hits her broadside, where she then asserts ... "Oh we won't need that .. that's not going to be necessary .. we can have like we did with J (the c'giver they did deploy at one point, 3 days a week . and xtra when needed .. and she ultimately ran her off, .. but that was just an individual that they knew of . .not a service, that can then send a replacement when person A fails to show up) .. she'll be asserting they can do like they did with J .. and .. just have someone they know .. maybe 2 or 3 days a week and her prepared to care for him in the interim.
That .. I hope .. would get met with some pushback from the pros .. in the respect that their recommendation is that he have around the clock "professional" care .. (she can't help him up if he falls . she is small in stature .. h377 I'd struggle to get him up and I'm not 80 yo like she is). Not to mention the other nuances of all this . that she fails to adequately see to his nutrition/hydration/meds, etc.
See, the other factor in this that I weigh in on .. and have
have somewhat dad's concurrence on .............
They don't need to live together ... that's the truth .. for this reason ...
She is so proprietary and territorial when it comes to him . .and his welfare and fails to see that she isn't the authority .. and that perhaps others have this in hand . .. and in control.
One of those aspects .. her fixation on him and pill addiction (which, accdg to my knowledge, is unfounded) ...
If the guy is taking so much as an antacid pill .. .she somehow gets it fixated in her brain he is popping another pain pill that she would have you believing he eats like candy.
My stance on all that, before he went this route of all the maladies he's endured was one of .. the guy is 81 yo . if he's hopelessly addicted to OXY .. whatever .. something is gonna take him outta this earth . and if not his poor health . then perhaps an OD on OXY ... whatever .. too far out of the gate at this point with everything else, to worry with that aspect .. so let him eat em like candy.
But since that time, and my repeatedly having asked of the healthcare folks . is he eating pain pills like candy .. I repeatedly get told no that isn't seen . not a problem.
Can't get K on that page. I've told her that I ck'd with them . and it's not seen as an issue there.
Reference her out of the blue call to me weeks back to ask me if my brother had brought my dad drugs under the table, .. and/or did my dad take some from home (yea right when he was carted out by ambulance .. uhm .. no .. ) or her assertion that maybe he packed some in his suitcase when he left there (uh .. K . he didn't have a suitcase, he was carted out on ambulance gurney, did you pack him a suitcase .. he didn't leave there with one) .. and no . my brother hasn't squirreled away some elicit drugs to him ..
She has this fixation on him and pain pills .. and no amount of logic or reasoning changes it. Nothing changes it.
She harps on him relentlessly . if she sees him with so much as what is in the end, an aspirin . to her .. it's one of those pain killers, he eats those things like candy . he's gonna get addicted. And saying to her, .. "what difference does it make, the man is 81 yo . so he gets addicted?", gets met with an answer, "It's going to kill him" and a response to that of "something is gonna kill all of us" .. doesn't change it either, nothing does.
I have voiced to my dad and on that point he and I are firmly on the same page ... that she will .. if residing with him ... harp at him and b&tch and raise h377 .. at every pill he's given .. even if it's nothing but a dam BP pill .. that it's pain killers ...
Doesn't need to be residing with him .. for that reason among many.
It was always said by her daughter the ONLY way .. let me repeat that .. the O.N.L.Y. way you'd ever get her out of that house and into a setting is if my dad goes . she'd follow .. fighting it every step of the way .. and so forth . but ultimately she'd go.
Now it's said .. "well if she isn't gonna reside with him .. then she won't leave her home, .. she would only do that if she's gonna be living with him".
So .. I dunno ...
I don't think my dad is wrapping his brain sufficiently around what it's gonna look like to go home . but that's what he wants to do .. and so .. we'll have the cursory conversation with the CM .. and the dialogue on costs/bene's .. etc .. and it'll all be for naught ..
He'll go home . she'll make sure that there is no c'giver brought to bear, 24/7 .. just ask her, she can take care of him . and him .. not able to fight city hall, acquiesce to same ..
Won't be long we'll circle back to another stint of months of hospital stays and rehabs and such . and round and round it'll go.
"Dad, here's the thing. It is SO unfair to poor K for you to go home. She's going to be SO upset at all those workman in the house, making the modifications that will be needed. A ramp that tears up her garden, those awful grab bars all over the bathroom. A hospital bed in the living room. It's going to make her so sad and upset.
It's really too much for her to wrap her brain around--and the cost! We're talking 16K per month for in home care and that isn't even counting the construction costs. That's gonna give her a stroke for sure.
And having caregivers there 24/7; Dad, you KNOW how much she hates having anyone else in the house.
The kindest thing you can do is to get a lovely suite at that nice AL on the campus. She'll come and visit and she'll be DYING to move in with you!"
Stay on script. Don't add extras unless you've scripted them out in advance.
You are looking at the bleakest possible outcome (which, yes, needs to be thought about, but not repeatedly wearing a path in your mind)....realistically--really...do you see your dad having any chance of returning home under any circumstances? As we read this post---I think most of us see an old man slowly doing the march to the end of life. He's a fighter, for sure. But he's terminal. I don't say that to upset you, but to remind you that you've posted a lot about how he's gone downhill, they work on him with some 'new' procedure and he has a couple semi-not-awful days and then he falls, or has a UTI and we're back at "GO"...with more cuts and scrapes and less mobility.
He seems really capable of not seeing the forest for the trees.
Going back home to live with a mentally ill wife would be the quick end of him. She is focused on one thing: his pain pills, which, BTW, he CAN'T abuse while in the hospital as they bring him what he needs. She'd drive him completely insane with her just being her--and no offense, she can't help it.
At this point, he just needs palliative care or perhaps Hospice. He needs to be handled gently and with calm and peace. K is incapable of that.
I think using the EXACT words that Barb said would achieve the best outcome. Hit K where she will be most reactive--talk about money.
At this point, this is NOT about her. It's all about your dad and what he needs. Stop worrying, friend, about the things you think 'might' happen. You'll go crazy.
I care about you and wish this were all different/ COVID sure has messed with our heads, hasn't it? Changed the very basic way we're used to living.
You need a big break from this--wish I could give it to you. Just try to make calm, measured decisions.
In the end, whatever you can maneuver--will be what it is. (and personally? I think your dad has enjoyed his break from K.)
But next time he might not even make it the entire way to hospital and then rehab. He might not even make it to the hospital.
I just hope that you do not enable him to come home in any way. Enabling would include driving him home (or, really, arranging any transportation to get him home in any way). As HCPOA, you have a responsibility to make decisions in his best interest, right? To follow his wishes for his own health. Do his plans for his own health involve wanting himself to become dehydrated, to not get enough to eat, to be left in his own soil and urine, or to be left on the floor because he can't get up and there is no one else there beside K? Probably not. And so you shouldn't want these things for him, either. And that is why you should have no part in any plans to bring him home.
I honestly don’t remember how it came up - it wasn’t a topic we talked about much - especially as it related to them (eewww!) but the sentiment really struck me.
Aside from sharing my mothers TMI nugget - I wanted to relate it to Dorkers dad saying he wants to make a pit stop at home before he makes the move to facility living.
I imagine that not realizing the last time he spent a night in his own home - would be the last time he spent the night in his own him - is weighing on him.
I imagine he has this picture in his head of spending some time sitting in his usual chair, surveying his domain and taking a nostalgic walk down memory lane. Then, after completing this satisfying journey, packing up the compliant Mrs and making the move.
EXCEPT - we know this isn’t how it’s gonna go. Once he gets back home he won’t be leaving it again unless it’s on a gurney. Just a matter of time.
However - if dad becoming somewhat independently ambulatory is the litmus test for him making that pit stop - I wouldn’t worry about it. That ain’t ever gonna happen.
What will happen is - push coming to shove and the rehab saying “you don’t have to go ____, but you can’t stay here”. Do not expect them to do anything decisive or substantial just because you’ve yelled it from the rooftops that home is not a safe option. They WILL NOT take the lead in this battle. They just won’t.
By any chance - is stepsister an option for an alliance? Can she talk to dad and say something along the line of “Mom can’t take care of herself, let alone look after your considerable needs. And we all know - an outside caregiver is not a realistic option. Can you, dear stepdad - go on ahead and lit the signal fire? Mom will follow you and then you BOTH will be in a place where you’ll receive the care you need”.
Just a thought.
And on a side note, Dorker - while AL will very likely be less expensive than a 24/7 in home caregiver - you are kidding yourself if you think you’ll find one in the $5,000 - $6,000 range. Not with the level of care your dad - and potentially K - needs.
I have been in touch already with the group that did some Doppler study on his legs and found occlusion there in the femoral artery. They suspect and would like to do more study .. more occlusion in the pelvic artery (?) leading to that artery .. and thus, the slow healing in his legs/heels (pressure sores on his heels).
There is supposedly some bypass procedure, much like a heart bypass thing . .can be done on legs also ..
But at this point, .. in talking with my dad .. who .. is over it with all the procedures and tests .. (can't blame him) ... .and the fact he'd have to be carted out of there for same .. and then quarantine upon his return there ...
I made the "call' with his agreement *let's hold off on that, .. see if the sores/wounds continue to heal (as they are doing, albeit slowly) .. and if not .. we'll revisit this whole thing ... let's give it a while and see".
As I was told by the NP of that group . . "we can do that, . yes .. and I'll be visiting again on Wednesday and take another look at his wounds/sores .. and we'll see how things look, .. what we don't want to do is lose that toe ... and .. so .. if we have to .. we can move on a dime .. but hopefully we won't have to do that".
So that's how that stands at the moment. He also was to have a PET scan which can't be done on site .. he'd have to be carted out for that .. and then quarantine upon his return there.
That too, I made the "call" with his agreement .. what's the point .. cart him outta there for a PET scan that he can do little about at this point. Yes might set his mind at ease ... that it was .. as they said "it's either pneumonia .. which we're treating with an antibiotic in case .. or it's a mass/lesion of some sort .. we won't know until we do a PET scan" .. what's the point .. .yes . if it's found to be a mass of some sort, he is in no shape at this point to undergo a biopsy .. why put him thru that at this point".
So those two things remain as outliers that need attention/focus .. and as far as I'm concerned .. will have to be seen to at a later date. Right now .. his ambulating/mobility needs to be more the focus ...
SIGH. A conversation with him yesterday . he is dead set on going home ... c'giver(s) in place yes .. but going home to his house. And called to let me know he has word out to the CM to have her stop by and give him brochures, etc .. as to who to call to set that in motion .. to get c'giver(s) brought to bear .. and that he has "buy-in" from his wife (so he tells me) .. that she too admits it's bigger than her, she can't handle his health issues .. and so buys in also.
At that, I told him .. ."Dad it's going to be really really expensive to do that .. of course, your $ you spend it the way you want to, but you're forgetting . she may buy in right now, 10 mins later, it may be a different story".
Doesn't matter what I say really . he is dead set on going home.
Not imminently mind you . his words "I have to reach a much higher level than I currently am as to mobility for certain before I can entertain that as a plan".
My response: "Not to mention .. if you can't get up and ambulate better than you are able to at present, home isn't going to be an option dad .. your house will not accommodate a wheelchair thru the doorways .. anywhere".
At that I told him of my awareness that stepsister had at one point in all of this stumbled upon some family owned group of professionals that have worked that area of town for years and years .. in home c'givers ... all licensed/bonded, insured, reputable .. above board . not just an individual as they employed previously and that she'd been impressed by them . that I'd reach out to her on his behalf . and have her call him and share the name/phone #'s of these folks.
I did do that.
In talking with stepsister .. and I concur 150%
Stepsister: "What is he thinking . ya know . he says mom buys in on all this ... of course she does .. but she's missing him terribly and her vision of it all isn't an accurate one, nor is his ... I mean .. they've both forgotten . when he lived there he snapped at her all the time, her asking repeatedly, the same questions already answered countless times and him snapping at her .. and yea .. right now it's all peachy keen and sweet as pie .. because she talks to him on the phone and misses him terribly ... but when they're under the same dam roof ... he snaps at her horribly (and he does yes) .. and she asks the same questions he already answered a dozen times .. it's not good . what is he thinking?".
Her also most concerned, .. "is this imminent, are they discharging him imminently?".
Me explaining to her that no .. to my knowledge he has a long way to go .. not to mention the impediments that the house isn't ADA at all ... and would have to include some major construction to make it so".
She and I both in agreement, it's a wrong decision but powerless to do a dam thing about it ... it will be, whatever ...
Her mom .. is apparently afflicted .. per her .. with good days/bad days . some days her lucidity is on target and firing on all cylinders .. not so on other days .. she can get stuck on and fixated ... as stepsister noted . her having helped to get their taxes prepared .. finally .. a project that she got a lot of pushback from her mom on, not wanting her into their affairs . but dam .. I mean .. the congress granted an extension from April 15 to July 15 .. she's not able (mentally) to do it .... some dam body better .. so stepsister took that on . and has it almost to completion .. but her mom pushing back and having had to sign some piece of tax document about .. I don't know, some disclaimer we all sign .. that falsifying .. this or that can be the IRS coming for you .. that had her fixated that the IRS would be coming to put handcuffs on her, and cart her off to jail. That ... one .. that stepsister has seen lately.
Not to mention that .. her mother won't spend the $ to get a takeout anywhere . isn't capable any longer of really preparing a meal . with all the mixing and measuring that has to occur .. but . wont' spend the $ to get a takeout from anywhere ...
As stepsister puts it .. she acts like she's down to her last dam dollar to her name .. and will be broke if she spends the $ to have Olive Garden bring a meal there .. a meal she could likely eat on on for 3 days .. since she eats so little.
So yes, later this morning I will be conference'd in via phone .. for CM meeting .. and will listen in .. to what's said and provide whatever input ...
I do have a question I'd like to get out there . and see where it lands .. what are his insurance bene's as to this stay .. at rehab.
I mean it can't go on forever him in this status of . working on inpatient PT .. that can't go on forever, .. when does that end? What if he is still ... at that point, not ambulating .. "well enough" to go home .. what happens then .. he goes home anyway .. or pays himself . self-pay to continue his stay there ... or pays to have his home retrofitted so he can be wheelchair bound in his own home . and c'givers around the clock is that the course we follow here, .. when does that occur?".
And on the front with MIL .. I don't know ... I guess .. color me . annoyed .. really annoyed.
Not proud of it . wish I had the wherewithal to be all things to all people .. I don't.
SIL had texted into that group text that lays dormant mostly . the other day . that she'd gotten on it there at where MIl resides .. that MIL doesn't have a tv. Her roomie does . but she does not .. and so she'd gotten on it, to get a tv brought for her mom.
My thoughts . which I didn't weigh in .. "why? When she did have one . in the other room, it never got turned on . she didn't watch it .. but okay SIL if it makes you feel better
If it makes you feel better to spin tops and whirligigs .. go for it".
I didn't say that, but that was my sentiment ... same as it ever was I guess.
Then .. another text into that group text .. to announce she'd ordered for delivery for her mom (who is for all practical purposes now bed bound . no longer gets into the wheelchair, at all ... and .. because choking had become such a problem in the last several weeks has now graduated to having thickener put into her fluids and .. puree'd foods) .. that she'd asked them if it would be alright to have Panera bring her mom (a favorite of her mom's always) the Broccoli cheddar soup. Answer had been . yes that should be okay but not the breads they provide with the soup . that bread is much too hard and chewy and she'd choke, so make sure they don't bring the bread.
So SIL announcing she'd ordered from Panera the delivery of some broccoli cheddar soup .. and that she was worried, .. that she'd been abundantly clear, to not include the bread .. but worried they'd do so anyway . and her mom . always such a fan of bread .. would try to eat it, and choke.
Then in another text into that group text ... a question from SIL: "When was the last time you had a Skype with mom? She's mentioned wanting to Skype".
SIL has herself set up to Skype every-other-day .. with her mom . and does so. I think she would do it every day . maybe even more than once a day if it was allowed. But it's not .. they have other residents and the staff has to do what they can to accommodate all who wish to Skype with family.
So this question comes forth in that group text .. and I ignored it, .. never responded, this was days ago.
That question wasn't directed to anyone in particular, .. it's a group text, to DH and myself ... and it didn't specify who she was asking that question to directly.
I don't, haven't ever, set up my own Skype with their mom ...
Not proud of that ... MIL deserves betters, she was a kind MIL and a great wonderful g'ma to our kids .. .always ... and she deserves better .... but I am only one person .. and I can only send my focus and my sentiments and care .. so far. That's the truth. I have my own responsibilities .. and .. I have participated .. if/when DH has skyped in my presence with his mom .. but have never set up a skype of my own for their mom . with just she and me. Don't really intend to do so.
I am the one who schedules a Skype for her son .. if and when that occurs . .. he doesn't have time to play phone tag with the dept there at the site where MIL resides, to get that dialed in on . and so I'm the one that does so on his behalf and sets an appt to skype with his mom.
I ask him periodically if he'd like me to get one set up for him . and sometimes the answer is yes .. and I do so if asked .. and sometimes (as was the case last week) . the answer is no .. .that he'll just call her.
I think for him .. and his work schedule .. to set up a skype session . means he is now having to depart from whatever he has his hands and back into as to work, to now set aside .. to talk to his mom on the smartphone on screen .. where as the alternative .. just calling her . means he can do so at his own leisure .. at a time that works better for him ... and so .. at times he prefers the latter rather than the former, and so declines a set up of a Skype session.
Fine by me, I don't argue the point .. I just simply set that up for him if he requests.
So comes forth that in a group text, .. and I also know that she's leaned on our daughters with that same request .. as both have shared that with me .. that SIL is in their ears to set up a Skype session .. I think both have done so by now .. her leaning on DD with the whole ... "Mom sure would enjoy seeing those kiddos if you can set up a Skype session with her". DD has done so by now. Leaning on YD with "you should set up a Skype with you and your doggie, . mother always
Mother always enjoys talking to you about all your adventures and seeing your dog". YD has done so by now.
So comes forth the request in that group text .. asking when was the last time a Skype session was set up.
I didn't answer it. I had nothing nice to say .. so didn't respond.
If I had've responded it would've been .. " I ask your brother .. and when he wants a Skype session .. I do so, .. I asked him last week and the answer I got from him was .. "I'll just call her" and he did so .. several times".
Waited for DH to respond . since it was a group text afterall, and since, .. it's not anything I do .. set up Skype for me to Skype with their mom.
No response from DH as usual.
Nor did I do as I once would've done .. harp at him . .. "hey your sister want you to Skype with your mom . did you answer her text".
Didn't harp at him to respond .. didn't even mention it at all. He chose not to respond, so be it. Nor did I.
So that text hung there unanswered to for days.
Then yesterday I sent out a text into that group text, informing that a check arrived here in the mail yesterday to their mom from BCBS .. for $105 ... and just informing of that, . and .. if any of the two cared to address it.
That met with a response from SIL: "I don't know that that would be for .. maybe I'll check with the place where she resides, that's where she gets all her medical care (and she goes on from that) .. "I sent a separate text to DH ... asking if he'd set up a Skype with mom".
I responded at that point . because in a sense it was pizzing me off .. .. I don't answer to her.
My response: "DH knows that I will set up a Skype for him at anytime that works for him .. we do so .. when he asks ... and I asked him last week and he declined .. instead opting to call his mom . which he did do several times last week".
Her response "I think she just would like to *see* him too".
My response to that: "Yep .. whatever works for him".
Pizzed me off. Like a dam gnat that won't leave .. just buzzing and buzzing at you.
I did ask DH this morning, .. "So, sounds like your sister wants you to set up a Skype with your mom, need me to get that set up for you?".
Him; "yea, today isn't a good day for that, see if you can get something scheduled for tomorrow".
I'll do so. .. I'll call them . and that's how we've worked it all along ...
I don't know why she can't leave well enough alone. Does she somehow think that her mom will get ignored .. if she doesn't prompt. He calls her .. as his schedule allows .. and he knows .. I know . if Skype is the means by which he chooses to reach out, .. I will gladly set that up for him. Why does it take her prompting .. and .. entering into . what is essentially none of her biz.
Just .. annoying as h377.
As regards your father, I think it's very likely that he will never improve to the point that he wouldn't need a wheelchair at home. Physical adaptations to his house aren't going to happen for his "temporary" stay. I wonder if your father knows that his going home is really just magical thinking.
I don't know .. it's not realistic IMO that he return home .. but I'm not a PT .. and so have no way to know how much he can recover as to mobility .. if any. I can't even put my eyes on him . can't enter because of Covid restrictions.
As to SIL ... yes, it rattles me. It feels almost as if it's a prompt to hop to .. from days of old.
I thought my having ignored the original text on that topic several days back .. maybe that was sufficient and she'd reach out to her brother on that topic. In fact, I know the two of them talked to one another in the ensuing days .. as the aunt that died within the last weeks, left behind two sons .. adult sons . who are now feuding with one another as to assets .. and SIL in the know on that topic, then phoning DH to impart some of what's going on there.
Maybe in me, it's a resentment from the aspect that I don't do the whole reach out to MIl as I once envisioned I might do, and certainly haven't involved myself in the Skype thing as to reaching out to her. Not anything I'm proud of ... but ... the fact remains .. I reached a saturation point with it all .. and the whole . hop to from afar .. to the point I backed way way way outta all of it. To the degree I don't reach out myself.
If I happen to be around when DH is talking with his mom and that does happen ... from time to time .. I weigh in . and speak to her, . and have some brief conversation . .be that via Skype and/or sometimes just phone. But to do so on my own .. no .. I don't do that.
Maybe the pit of my gut with it all, . .maybe has more to do with resentment on my part. That whole hop to notion that I endured far too long.
And as I weather what I have with my dad's plight ... and I'm not nearly as entrenched as is SIL with her mom ... I thank the heavens I had the foresight to realize on some level that I was spent with the MIl situation and couldn't continue doing it, .. knowing I have my own parents that will need my focus at some point.
In fact, .. I've heard it more than once in recent weeks as MIL has taken a turn for the worse. You see, .. in this time that Covid has restricted access to visits there .. she did .. at least for a while, cruise around in her wheelchair some thru all of this. . But that was put to a stop .. and so . .she was remanded to her room only.
Do I agree with that? Not really? But it's not up to me. They want to do all they can to lessen ANY exposure to Covid in that site, so they do what they do. That then restricted her ability to even cruise around in her wheelchair.
Somewhere in all that .. she has taken a turn for the worse ... in that she is now . and has been bed bound . and doesn't even get into the wheelchair anymore. In fact, it's said there .. that she's too weak for them to transfer her to the wheelchair for the much coveted trips outdoors to just sit outside.
She also developed a real choking issue in all this and now has to have her foods pureed, thickener in her fluids.
So the situation with their mom has gone from what was already sad for them to even more horrid.
She can't have visitors . and yes .. that I do agree ... they have to do what they have to do there .. but it's so tragically sad for older folks all over this country who now live so isolated because of it. So so sad.
I wonder how long can they treat these elderly like prisoners essentially . .ceasing all activities (none that she did anyway) .. but no visitors .. just so sad.
But if I've heard it once over these latest events, I've heard it more than once .. "Sure wish we could bring her here . it's so sad she has to be all alone"
Along with, .. "so sad she'll probably die alone in that place .. she the person who was there .. there for her mom as she passed, .. there for her dad as he passed . there .. there for her husband and with him as he passed .. there for one of her sisters when she passed . but she has to be all alone".
I hear all these rumblings, in fact, even at one point, YD in tears .. as she talked to MIL on the phone or tried to . and MIL who seems to vacillate between lucid and not at all lucid .. and found her not so lucid .. and now YD in tears . and a cross of sadness and anger, .. "Why can't we bring her here . she's dying . she shouldn't have to die alone".
To DH's response to her: "Your mom is the only one here to care for her . and your mom has her hands full with her dad".
To DH also saying somewhat the same things ... as to his mom .. "I sure wish we could bring her here" ...
I don't entertain the topic .. I don't engage. I walk away.
I agree it's tragically sad, particularly for someone who I've only known to be a kind person all my time knowing her . and that same person who accompanied many of her loved one's into the next life ... and yet she can't have that for herself. I agree it's so sad.
But .. there is absolutely no way I could care for someone who can no longer ambulate to toilet herself .. and bathe herself, has to have her foods pureed, diaper'd .. so forth. No way .. absolutely no way I could do that.
My only thought is one of . .maybe she shouldn't of been so insistent when she was more lucid that she be returned to her beloved FL .. gambling that she'd be left alone once again in her own home ... with her "Now I will manage" that her son and daughter bought continuously. She gambled, and lost.
Got back here, to her beloved FL finally .. and then fell ill with a UTI . and hospitalized and from there, a broken hip .. and ... so here we are .. her wheelchair bound since then, and confined to a LTC site.
I don't know . maybe if she'd been not so oppositional to staying in IL where her daughter is . who is so very attentive to everything short of a hiccup and then some . maybe in these waning days of her mom's life . she'd of felt it suitable (though I doubt it, .. she too found out it was more than she could withstand, her mom's care, and that was before her mom was wheelchair bound and the host of other issues now present) .. maybe she could've seen fit to bring her into her own home with all the deep need at this point, so she wouldn't have to "die alone".
I just don't take kindly anymore to the hop to thing. In fact, . it generally hits me broadside.
You are being very good at keeping boundaries firm and for that I applaud you! Not jumping up and making everything 'right' is hard to do!
(I'm sitting here vacillating between going to mother's and just DUSTING her apartment or leaving her be...nobody pays any attention to her state of cleanliness...and despite my honest intentions of never getting involved with her living environment..part of me just can't bear the thought she has long ropy cobwebs hanging from the kitchen lights--and they drift into her food--no one but me is bothered by that!)
You are aware that your dad is just whistling Dixie, right? He can say whatever he wants, but the truth is, nobody can see him getting better. HAS he gotten 'better' since his last hospitalization? Doesn't seem like it. Let him waffle on about his 'plans' unless he can walk on his own and/or his home is at least partially retrofitted for a wheelchair, he's going nowhere. I suppose he could do a "AMA" self discharge, but he'd need a LOT of shoring up to make that work. K couldn't do it, and you & brother aren't.
I'd just listen to his grand plans and say "ok dad, whatever works" and let it go.
You were good to kibosh the unnecessary tests for him. Really, at this stage, he does not need one more procedure or test. Poor man, a surgery at this point would do him in. I'm often surprised by how aggressive drs can be with elderly patients--wanting to do this and such when the person is barely clinging to life.
Stick to your guns--it's hard, but it sounds like dad is agreeing with you. The dreams he has of going home remind me of my FIL talking about taking a trip to Spain--the night before he died. Whatever he said he wanted, we just went along with it.
You've got plenty on your plate. You're doing it all so well. Life after both dad and MIL pass is going to be so different and, I don't want to sound callous, so much calmer.
((Hugs)) Hope the rest of your life is going well/better.
Other than, dietary noting he is on a "mechanical soft" diet .. which I'd been unaware of .. and is working with speech therapy as to swallowing.
He has apparently graduated somewhat as to PT . in that he is gait assist now .. as to dressing . and xfer .... where before he was more full assist. He is walking 20/25 feet with assist on two wheel walker ...
Questions still linger as to what will be done with regard to his wounds/vascular issues. It's known there is blockage in the femoral artery . and the vascular folks would like to do further study . and perhaps bypass there .. and he doesn't wish to proceed at this point, .. done with tests/procedures.
That .. that issue . .remains at this point a "wait and see" .. .and if the wounds continue to heal . which they are doing .. albeit slow slow slow slow ... then no go on vascular at this point in time. But that will need addressing at some point.
As will the PET scan that's wanted, as to the suspicious area in his lung .. that too will have to be addressed at some point.
They can cart him outta there medical transport for same but with Covid . any transport out of there, requires mandatory quarantine upon return .. and so .. kinda nixes the purpose of his being there, PT.
Will need, at some point, visit to Cardio to read the loop recorder installed .. to read his Afib .. .that too . would require a trip outta there . as would the PET scan .. as would the vascular issue ... and trips outta there, at this point .. leaned against, in agreement with my dad . and asserted by me.
At some point, .. when he gets discharged and goes home .. (his want) those items will need to be focused on . how that happens .. I don't know. Just how ambulatory will he be when discharged? Who knows . who can say? Nobody at this point.
I did ask yesterday as to his bene's and this stay at rehab . and how that intersects with exhausting the bene's . and him jacked outta there.
The answer I got, .. "As long as he is making measurable/marked progress we continue to work on it .. Medicare will pay for him to stay here . as long as there is measurable progress .. if he plateaus .. that can change .. and we don't know ... that may occur . but at this point, there is measurable progress that is being made, so there is no discharge date imminent at this point".
That's what the CM stated as to the above question. I'm not real satisfied that was dialed in on and answered sufficiently. To my knowledge those bene's as to inpatient rehab stays are not infinite .. and at some point will exhaust . irregardless of what progress is being made, . .and it will be said . that further progress can be made, outpatient .. outta here ya go.
When does that come? Who can say?
I did ask for (again) .. a meeting with CM .. and dad .. and his wife if he feels inclined (though she doesn't process/retain that which is told to her, the finite detail of all this .. way beyond her pay grade at this point) .. but I want it tabled .. as to the cost on all this in home 24/7 c'givers ... let's get that out in the open .. let's get it out in the open and in K's ear .. that this will be costly (that point alone will send her reeling) .. let's get it out in the open that his coming home (what he and she both want more than life itself) .. is going to be necessary as to in home 24/7 c'givers, medically necessary . (though any hope of her retaining that .. pretty hopeless) ... let's get it out in the open what services are available in a residential setting such as ALF .. should he attain that level of functionality vs cost thereof . let's table all this for dialogue in the open for all parties to hear it (though hoping K can sort thru and retain all this . .might as well go tell my 3 yo g'kids .. would have about as much meaning to them).
So .. no real news from the meeting really. Kinda suspected as much. They want to cart him
At this point, Dorker, your job is to advocate for the best care for dad; everything else is in his hands and he should be directing it. You should probably give the CM the head's up that you will not in ANY WAY assist if he insists on ill-advisedly going home; that you will not transport him, not show up at his door, not bring him his meds. You will continue to love and call him, but not provide any assistance. That will assist the CM in deciding what a "safe discharge" looks like.
One thing to remember is that Home Health Care cannot be set up until the patient is AT HOME. This can mean that the patient is alone or with family for the first 48-96 hours if discharge is sudden or on a weekend. Point out to CM that your dad will not survive that amount of time alone with K and that you have no intention of propping up this charade.
You may have to harden your heart a bit to do this; start practicing.