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:
I think Dorker is not in the worst hit area? I certainly hope we all come through this.. 🙏
I hear they are running out of ICU beds in Florida. That's the situation we were in here in NY 2 months ago. Hope Florida gets through this okay.
Of course, that was before FL exploded with cases...
I've wanted to say something about the lack of covid-19 precautions for quite a while, but some people don't believe in it. Just yesterday, someone on my church's FB page told me that the pandemic will go away after the election.
Dorker, do you read my posts?
“...until Friday of last week when suddenly that changed in an impromptu call from CM took me by surprise.”
I mean, I’m certainly no oracle - no end all be all when it comes to caregiving of the aged. But - I did do this for over six years and for both of my parents. I warned you that this was how it would go. I believe my exact words were “...so fast your head will spin”. Sigh. I don’t get why this came as any type of a surprise.
So - in further waste of my time and advice - I will say this: Of all the things you have written about today - the thing I find most disturbing is the fact you are accompanying your daughter and her kids to a water park. Not because of the current cluster eff with your father - but because of Covid19 - in Florida - the state that is and has been for a while now - diagnosing over 10,000 new cases of Coronavirus a day.
SMH
All of the documents you mention (DPOA, will/trust, HCPOA,) should have been done at age 55. You pressed last year for your dad to take care of business. He didn't. Too bad, so sad, Dad.
I'm sorry if that sounds heartless, but I see no need for YOU to upend YOUR life because he's so suspicious of your motives in trying to help, or too cheap to go to a lawyer, or too scared of his wife.
Let the facility send him home and let Stepsis (who has her mother's best interests at heart AND her POA, apparently) figure out the home care situation. AND she has access to the LTC policy. You have bubkis, and always will, unfortunately.
Enjoy the grandkids.
I just hope you can continue to stay (mostly) uninvolved. In the past, you have said you did such and such because you weren't the kind of person to not do such and such. Knowing what the inevitable will happen if he goes home, I hope you CAN be that kind of person to stay strong and uninvolved this time.
I hope you can walk the talk!
A year ago I was on him like white on rice, . that he needs to get DPOA done .. and he kicked the can down the road.
So here we sit . him and all his maladies over the last couple of months and in and out of the hospital and rehabs . and my at least participatory in the fact I've tried to get a read all along as to when is discharge. I was told there are no imminent plans for same, .. until Friday of last week when suddenly that changed in an impromptu call from CM . took me by surprise.
So Monday I got on it, . to try to find ALF respite site for him .. and I do have a few that will be available to do so ... but those wounds .. they seem to be a barrier to any path forward .. and so the ball is in the CM's court, as she was .. as of Monday to give me some better clarity on that and I've heard nothing further.
So we'll see. I left a VM for the CM to call me, interestingly enough, this facility .. one calls the main phone # .. and not the CM herself .. and all I got was the ability to leave a VM . .I didn't reach a human. So be it.
I guess I can forgo my plans for the day to camp out here on the phone, in effort to try to reach CM .. and await her phone call.
Nope, not doing it.
these folks do what they do ... and be dam'd the torpedoes.
There isn't even, not at this juncture, agreement/arrangement for on site c'giver. I did ask that lady that runs the outfit .. "how much notice do you need?".
Her answer: "What we like to do .. is to meet the person we will be serving . and first do an assessment so we can partner them accordingly with appropriate c'givers .. with Covid that isn't always possible these days .. a lot of the sites are allowing us to come in as c'givers .. but some aren't .. and in those cases, sometimes we have to do it virtually . and we'll do that .. but I'd say if you could give me about 3 days .. we can usually have it up and functional and be ready to meet him when he arrives to his home to begin helping there".
That part hasn't been done. As I don't know .. what direction this will go .. will there be more clarity on the piece about his wounds, and him get to go respite to ALF? Will they suddenly turn on a dime and send him home . and no c'giver in place.
I don't know.
In any event, no matter what direction . he isn't ambulatory enough to climb into my car, .. so they'd need to arrange transport . to either ALF if that's where it goes . or to his home. So I won't be facilitating that.
I haven't called CM with a "Hey let's get something set up so that c'giver can meet him .. and do an assessment" .. ergo telegraphing to her .. "they've got this . we can send him packing". I haven't done that.
Is that then going to bite us all in the azz when they suddenly announce, Oh we have transport set up .. .he is being discharged this afternoon".. yea it could.
I have taken a wait and see approach .. when last I talked to the CM she was going to get a better read on those wounds from the wound care NP .. and i.e. that give her more to work with .. hopefully . as to persuading an ALF to take him .. (hopefully). That was Monday.
Today is the first day there hasn't been rain here, and so I am going to accompany DD and her kids to a water park .. and so I can either bail out on that plan and stay here and work the phones . or go enjoy the day with my g'kids. I'm opting for the latter.
Could I receive a call while at the water park, they are discharging him and h377 breaking loose. Not if I don't answer my phone.
I talked to my dad on the phone yesterday afternoon . and asked if he'd been visited by CM with any answers. No, he hasn't seen/talked to her.
I just called, and left a VM for the CM to call me back ... and looking for answers as to staging of those wounds.
Now, she'll call me back and I likely won't answer, phone tucked away in my beach bag. Yes, I could find that means all h377 breaks loose . and problems aplenty.
But I refuse .. absolutely refuse, to let this all consume my life .. I won't do it. I'm going to go on and live my life.
If it means that I pick up my cell phone at the end of the day to 40 messages left from a frantic stepmom who is now .. aware he is being transported home . a message from dad .. frantic that there is nothing in the works to stave this all off ... a message from CM that transport is ordered, and home he goes .. and a sundry of other messages.
So be it. I did tell my dad I'll be outta touch today .. entertaining my g'kids.
So he get sent home and can't even ambulate well enough to get into his home. Then I guess they will need to reach out to the group stepsis found .. (I've talked to those folks myself, but I haven't yet facilitated anything in the way of getting it set up to have them meet him). I guess they'd need to do so themselves . he and stepmom or not ... and he can amble there at the house and likely the first time he tries to transfer from chair to walker, fall in the floor .. and who knows, break a bone or not e able to get up .. whatever.
Folks, . ya gotta remember, a year ago.. I was encouraging him that he needs to be looking into a different setting.
I pushed back on that, fully aware that my words, vs that of the massive behemoth of the insurance company and their want to have him gone ... doesn't count for squat. Fully aware of that.
Haven't heard anything further, the above was Monday.
Yes, it was a surprise to me on Friday afternoon to have rec'd an impromptu call that they were looking to discharge dad. Last I'd heard .. even asking that, ... the answers had been "We don't have anything in the worksk as to disdcharge yet", .. and further, she'd said ... "but sometimes we get little notice ourselves".
That prior conversation had transpired the first of last week, then by Friday of that same week, I get an impromptu call informing me they are setting dad for discharge .. and plan forward needs to be discussed. Yea, surprised me.
Dad will most definitely, if sent home at his present level .. need around the clock c'giver. Not a question in my mind about that.
Will he willingly pay the freight for that. Nope. And yes there will be fallout from that choice, . and rapidly I suspect.
He agrees that he cannot go home .. .not at this level ... that he can't depend on his wife .. to be what is needed in his level of function at this point. He agrees on that point.
But balks at the cost of around the clock c'giving.
I don't blame his balking, . it's not gonna come cheap. And .. no I'm not willing to .. per se .. go spend nights over there, to be that on site (free or paid) c'giver. No. No I'm not willing to give up wknds and go in that direction to save those dollars. I haven't been asked, . but no, would be my answer.
In lieu of the xpense of round the clock c'givers ... the CM having mentioned self-pay at ALF .. is an option some follow . .as to continue building strength/mobility before returning home.
That, he is agreeable to .. costly yes, but not as costly as c'givers 24/7.
Stepsis found a group that works the area where they live. Dad and stepmom live in an area that is old money. I lived with them only til I was about 12, then moved to live with my mom. I don't have an connections to that side of town . and know folks there. Stepsis does .. she lived there with them til she went away to college, then when she graduated college, returned to that area ... and so she has connections to friends, etc. in that area.
She reached out to some of her friends . and I guess .. via their aging parents, etc .. that put her in touch with this family owned group of c'givers that have worked that area now for years, in the aging population there.
I don't honestly know .. a whole lot about this company other than my talking to the lady that owns it . they do provide a lot of what would be needed in his care. A lot of it, .. and stepsis has talked to her friends, etc .. and they come with great recommendations.
I think the route dad would prefer to take is to go to ALF respite stay .. and then home . and "IF" he can build back that strength/mobility (remains and IF as to how much of that can be achieved) then go home .. and the need for round the clock c'giver reduced .. in hopefully more mobility built in him ..
Whether dad gets to take that route .. who can say. For all I know they could call today .. and say .. "he's outta here .. gotta go" ..
Nothing in the works, at this point as to any ALF that will accept him. Last I heard the CM was going to get more clarity on those wounds, staging thereof .. to get a better read on whether ALF would be a workable path forward, that was Monday.
Does that mean they won't suddenly send him packing and no clear path forward. H377 no . these folks do what
If they were "ready to discharge for home" last week, how much longer is her father going to be allowed to stay there?
The REAL question for Dorker and stepsister is : What level of care does dad require (not "what will medicare/medicaid pay for). It's about what his NEEDS are. And then getting him into care that meets this needs. Two very different issues.
Couldn’t Dorker, as dads health rep, give permission for the CM to talk to the step? I know the folks at my moms rehab and NH would talk with my brother if I okay’d it. But maybe they were bending the rules? I don’t know -
just a thought since step is working on the in-home assistance angel.
And if that didn’t work - perhaps a mini conference call with both Dorker and step...
And yes, good suggestion in asking the rehab about some private pay days. I know that in both of my parents case - we went that route when the rehabs were chomping at the bit to cut my folks loose - but we were still getting the last wrinkles ironed out in their returning home. Of course - it was God awful expensive but my parents could afford it as it sounds as if Dorker dad can as well. Now - whether he’ll cut a check for that - when he’s the one chomping at the bit to go home is another matter altogether.
Dorker, was there any mention of filing an appeal? Or can you dad stay in current setting at private pay rates?
I believe that this discharge is about Medicare/insurance no longer paying, notvthat dad doesn't still need medical care.
Ffrom what you've told us about Al's in your area, Dorker, they require that clients be able to get themselves to the DR, right? Will 25 feet cut it? Wouldn't he need a personal assistant in AL to help with ambulation and transfers?
🤦🏼♀️
Don’t be surprised when dad calls you for help - and when you start to think something sounds off and say “call a nurse - hit the button” and he replies - “but I’m at home...”.
If they continue to hit a walk with you they will get dad to sign off in the discharge- as he is his own keeper after all - and then they’ll arrange a ride home and off he’ll be sent into the world. And, they get his room ready for the next patient.
Just saying...
Edit: Maybe now would be a good time to have the CM give stepsis a call. This is not a bus that can be driven from the backseat.
As Barb stated, GOOD FOR YOU for not taking the bait and facilitating the home discharge. He can't end up going home if there is no one to make all of the arrangements. You're not going to do that, so it won't happen.
Keep us updated!
Story goes now .... call from CM last week .. "ready to discharge dad for home"
Explanation there ... to her .. "he's not ready to go home . he isn't yet ambulatory enough to manage at home .. needs spotters for transfer, .. needs spotter for walking on walker, the 25 feet he can manage, that's not safe"
Response was: "Well in some cases people hire in home c'givers .. and/or . some opt for a respite stay in ALF to continue (self pay) working to rebuild strength . and you guys might want to pursue one of those avenues.
Round the clock care is going to be $12k a month . or thereabout if needed that long a period of time. Dad balks at that as viable.
Respite stay at ALF is meeting barriers in his necessity for wound care .. .ALF's not staffed to address wound care bandage changes,, cleaning, . as frequently as is needed for him and his skin issues.
Call yesterday from CM .. "So I talked with the ALF arm of our campus here and they won't take him because of his wounds . and so what we're looking to do is discharge him to home with a wound care nurse to visit his home 3x's weekly".
Me: No, ,that is an unsafe discharge .. it's well known and agreed to he needs more time to work to strengthen to ambulate more independently and that can be achieved thru self pay respite stay in ALF .. which is an agreeable approach .. the fact they aren't staffed to address that, . send that same wound care nurse to the ALF"
CM: They have all kinds of rules about limiting independent contractors due to Covid, so that presents a problem in getting a wound care nurse into that setting"
Me: "Then find one that does allow that .. home is not a safe discharge".
CM: "I will work with our wound care nurse here to get more clarity on staging of his wounds . to see what if anything can be done as to a path forward and get back with you".
That's how things stand at this moment. That was yesterday . have heard no more.
I did call a few ALF's as to pricing . and availability as to respite stay . .and one didn't have any vacancy . and another one didn't call me back at all .. and another 2 indicate they do have respite stay . but all seem to want to take issue was to the wounds .. and so that's not a surprise that CM came forth with their ALF arm at their campus .. pushing back on entry there.
My point .. "if his wounds are such that they need attending to .. then he needs to be in a medical setting . and absent that he is unsafe to discharge".
Have no idea who will win this battle, likely medical community and home he will go . and from there he can begin stroking checks to tune of the thousands it'll cost to have in home c'giver, .. or not . .and going home absent anyone to help him . reliably .. around the clock, will soon result in disaster, . like I'd predict within a day if not less ..
So be it, I suppose. I can't wave a magic wand to make him more ambulatory nor can I fight city hall endlessly.
Rainmom, you really nailed it on CM's disinterest in Dorker's father living situation. His stepdaughter is looking into fulltime help, so since you told CM that, she's checked that box. And CM isn't going to be interested in arranging a family meeting so that Dorker is satisfied that K has been told your father's condition. Dealing with family dynamics isn't in her job description.
MIL and your father both seem to be heading to their end days. Take care of yourself during these difficult times.
I did not really let my mother go home because everything I had to deal with at her home would have been impossible with her there. Granted she had no one to go home to. Once rehab let us know there would be no more coverage I got right on what AL facility to place her in. She was not nearly as bad off as your father is but her home was a mess. Took us months to ready it for sale.
I have not seen my mother since March as her facility is on lockdown. I feel badly that she cannot see her great grandchildren who make semi annual trips here but then I get the seriousness of this new frightening world. She was beginning to complain so I think I will have my husband who she seems to stay on the phone with longer explain about all the repercussions this pandemic has created. There are numerous small businesses here in SC closing right and left. I did manage to get into the conversation after her complaining that this is simply a terrible time for the world.
Seriously? Dorker, you just gifted the rehab with a hall pass - pretty bow and all. As well - every word you’ve spoken against a home discharge has now been negated.
The only note that the CM has in your fathers file is “Daughter confirms stepdaughter has hired full time, in home caregivers”.
When Medicare and/or your fathers supplemental insurance stops paying, the rehabs single objective will be to get your fathers bed made available to a paying patient and they’ll do it so fast your head will spin. They will put your father out on the curb and notate in his file that the Surgeon General himself has pulled up in an ambulance with Dr. Fauci riding shotgun - to take your father home and oversee his care.
You’re still trying to be “a little bit pregnant”. The way I see it - and have experienced it - you’ve got two
choices: Either get behind the wheel and drive the bus - or - get off the road altogether.
I could be wrong... but I’m not.
I can predict there will be some "Dorker, I need you to _________" or "Dorker, can you ________" Are you sure you will stand your ground and refuse?
Will you be able to turn your back? You've said before that you aren't "that kind of person" when you decide to do something for him.
That is the point that you need to make.
Frankly, you made it sound as though stepsister is setting this all up and everything will be fine. CM needs to know that you will be stepping away.
There are times to be polite and there are times not to be. This is the time when you have to get a bit....rough. I didn't enjoy doing it either; I can recall one situation in a hospital where my mom was in tears that she was going to be labelled a "difficulty patient" when I said to the doctor "you haven't fixed what's wrong and she's not going home until you do".
I was not brought up to talk back to doctors and social workers. But sometimes you need to let them know the bottom line.
He volunteered into that conversation that he intends to have c'givers in place, .. and CM took this to note . and said in response .. "yes it's going to be necessary that be a part of your care plan", she then turned to me to ask, if I have done any of the planning w/regard to said plan.
My answer: "His stepdaughter has interviewed some family owned group that works that area of town and been pleased with them .. and referrals thereof. She has provided dad the phone #'s to that group as well as myself".
CM: "Yes okay well you will likely need c'givers so that's important that be a part of the plan as things move forward here"
............and onto another topic ..
Any assertion on my part, .. "Home is not a safe discharge" .. was nixed in that dialogue.
It's known that he wishes to "go home", it's known his intent is to have "c'giver(s) in place".
I did interject into that dialogue .. "Well it's been my hope that a meeting of sorts can take place, . between myself/dad and his wife if he's agreeable, and we all get on the same page on all this .. she has an aversion to having staff in her home . and .. past experience w/this . she will see fit they are dispensed with .. doesn't' want them there, thinks herself completely capable of his care .. and she isn't".
That met with dad interjecting: "She realizes, and readily admits at this point that she knows she can't care for my needs and so buys in on the whole concept".
To my interjection: "But she has dementia .. undx'd .. but dementia nonetheless, and what she says right now can be quite different than what she says 5 mins from now".
At that point, I roll my eyes as CM interjects the following: "Well it may be that you need to work with her physician .. and get some dx there .. and perhaps they can help her to come to terms with your needs, and I don't know, in some cases a mild sedative can help with some of these folks".
Me interjecting: Heretofore, . .there has been a real resistance on her part to go to the doc for any dx of that issue and I don't look for that to change
CM: "Yea that's some of what your dad has shared with us . and so I don't know . .. I mean ... we can all tell her, it's medically necessary but her retaining and owning that information . may not be possible".
My input at that point: That's why I am opposed to his going to his home .. his wife will be oppositional in the end, to having help in the home . and to his detriment. Obviously, his decision to make .. and I realize that .. but .. it's not anything I agree is a practical approach to all this"
I register my displeasure but that's all I can do . him thought of as sound mind ... it's his decision to make. I think it's reckless . but .. think whatever you want Dorker . it's gonna go the way he wishes .. and her.
But insistence on my part, . ."it's not a safe discharge" .. gets negated in his approach there will be c'giver(s) brought to bear.
Yea there will be .. for sure .. and that'll last only as long as she tolerates it ... which won't be long.
Yes, but firmly entrenched and dug in on my own heels of .. "I don't have to rescue them from their poor decisions either".
One thought of yours was telling--K is desperate to have him home, he is desperate to GO home--not to K but to the actual physical building that is his house.
Retrofitting a home for WC accessibility is VERY pricey--just a ramp up the stairs and widening a few doorways--it's an invasive, messy process. K will not like either the disruption in her life nor the expense.
IF they send him home, at some point, he will be essentially 'stuck' in one or two rooms while the remodeling takes place (I'm sorry, but I cannot see K allowing anything to be done until dad actually comes home). His bathroom will have to be a stand alone commode--so delightful in a living room! He will have CG's coming and going all day long. K will drive them nuts and they'll quit.
Sounds like the saving grace in all this may be Medicare and the rules they have about safe discharge. You keep up with the position that he is NOT a safe discharge and has no support AT ALL at home and I doubt he'll ever get his wish.
Just reading each day or so--IMHO, (which of course counts for nothing) he is not going to rehab much past where he is now. Continued issues keep cropping up, he refuses to sign a DNR so he is going to have some drama at some point. He's struggling to swallow now? That's new, isn't it? And not a good sign.
But you know, w/o a DNR, drs will continue to prescribe meds, therapy, procedures, etc until the patient is just worn out. I've seen it so many times.
You stay tough and refuse to be his go-to and do NOT take the job of carting him home. He wants to make his own decisions? Let him.
Hope all else is well/better in your life.
Important to remember. While you can do a Medicare appeal, that only gets a little more time. While your father is improving now, it wouldn't take much for a setback and plateau. Also realize that what is going to be best for your father (which is not to go home) is not what the CM will be advocating for. She will be advocating for whatever is easiest and gets the liability off the facility. If your father is of sound mind legally, he will decide.
And your stance should be that you step back and do not enable the foolishness of his going home. It will be hard, and, honestly, I wonder if you will be able to truly step away.
You can tell her all day long .. she could watch it herself .. with c'givers on site .. and she'd still insist he's throwing good money after bad . that she can do it . and ride him hard enough c'givers dismissed and him at her mercy ..
And not to mention what a hostile environment his home is . mostly because he has zero patience with his wife who asks the same repeated incessant questions . over and over, already answered . and him snapping at her.
One would think when you've been snapped at . and ugly enough . you'd shut up
Not her .. doesn't stop her . and it gets ugly and hostile ..
But I guess he and she both have forgotten that aspect of it all .. she so longing for him to come home . misses him terribly and he . wanting to come home . misses being home.
Being there in that proximity and all the hostility that goes on . is .. .IMO unbearable. It'd be the last place I'd wanna be.
Her with her fixation that he's hooked on oxy . and he can be popping a breath mint for God's sake but she'll ride herd on him that he's taking too many pain pills.
There is no convincing her, it's a fixation of her's . that it's not the case, he is not "hooked" on pain pills. He isn't .. confirmed by med folks ...
Doesn't matter, it's a fixation of her's .. and so she rides herd on him and he blows .. and it gets ugly.
She asks the same repeated, already answered questions ... and he blows ..
It's just a hostile setting . but that's what he wants to return to . that's what she wants .. for him to come home.
the vascular folks .. cart him outta there for more study on those blockages and possible fix on it ...
But he is done with tests/procedures (but yet won't sign a DNR) ... I guess vascular issues that are precluding sufficient healing in the legs won't imminently kill you usually .. but may mean in the end, the loss (surgical removal) of a toe . as is presently the danger . and they're watching it .. to see if healing progresses .. he is on an antibiotic for same and improvement seen (slow slow . but improvement seen) .. and so they're watching it .. but leg wounds .. .tissue paper thin skin .. that bangs on just the slightest thing .. then leaves a mar .. and wound . and pressure sores on his heels . and a toe wound that is possibly a bone infection that has reoccurred . .and all of this not healig sufficiently due to blockages in femoral artery ..
So .. they'd like to cart him outta there to do more on that end of things but he doesn't wish to do so. I agree. Let him work on his mobility there .. and the purpose for him being there . and watch the wounds as to progress or lack thereof . and if need be, . then revisit it .. and so that's the status on that.
Needs that PET scan but why? If they found that it's all fine and good, then great. If not .. if they found . "yea that doesn't look good, we need to biopsy" .. he can't withstand that, so why? No . not carting him outta there for that right now.
Had that loop recorder inserted to measure Afib .. and at some point will have to visit cardio docs for read (digitally) on that loop recorder's findings .. but that isn't pressing .. but it will have to be attended to at some point.
FWIW .. dad does put voice to the fact he has some realization that his ambulating will have to be markedly more improved before he can go home ... and him more independent as to xfer from chair, etc .. and to toilet, . and walking on walker. So he does have that realization and I voiced again . .that if he were to go home wheelchair as mostly his status .. his home would need some major construction .. as to doorways . ramps, etc.
The CM stating (and I'm all too aware) . her words something to the effect: "We see people go home all the time wheelchair bound ... where they never were before .. and the fact their home isn't wheelchair ready doesn't really necessitate further stay here .. sometimes .. we get as little as 3 days notice . that Medicare isn't paying any longer and so they have to go".
Me then responding: "that's why I'd kinda like a read as to when you guys think discharge will occur ... I mean .. his want is to go home . gonna be important those c'givers be at the ready to say the least ... and not to mention retrofitting his house to accommodate same".
Dad then chiming in: "I realize I have to be a whole lot more ambulatory than I am right now before I can go home .. I do have that realization .. so we have to see how much more mobility I can gain".
Me: And so that's why I'd like a read on his bene's vs the continued stay there to work on his mobility".
CM: "As long as he is making marked/measurable progress we continue to work on it .. if he plateaus . then .. we can't keep him here".
I don't know .... just all kinda disgusting . no answers anywhere you turn ..
They can't honestly say if he will plateau, they don't know, no one does .. all they can tell me is that he is progressing . slowly but yes .. marked/measurable progress is being seen. Will he progress to the point he can xfer sufficiently on his own . who can say? Will he progress to the point he can walk independently with the walker, dress himself independently .. who can say?
If not, when does that wall occur? Who can say?
And the other that remains the big elephant in the room is the fact his wife does not retain the fact she cannot care for 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.
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