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:
More testing. Beaches are open. People are rioting and being civilly disobedient. People are sick of COVID and are going out and hanging out. Sick of wearing masks in a hot, humid climate....and honestly, haven't we gotten a LOT of mixed messages about mask wearing? Soft openings of some businesses--all this adds us to a rise in # of cases.
The disease itself hasn't gotten worse--the testing is more available. We're going to see these peaks all summer as Memorial Day just passed--then the 4th of July, then..the whole summer.
This is the dynamic of a new 'virus strain'. It takes a long time to achieve herd immunity. FL also has a notoriously high # of elderly people who have retired there. COVID preys heavily on the aged.
Look at the stats (I haven't yet) and although there may be 3000 new cases, where are those concentrated?
Likely due to a number of factors
Workplaces re-opening & in some of those sites, employer mandated testing
Higher availability of testing
The re-opening of places like bars, restaurants etc (albeit at 75% capacity at present) and spreading some in that manner.
So yes, FL #'s appear to be spiking. Some communities (not mine) their authorities have mandated requiring face masks for all out in the public.
Our area hasnt been as heavily impacted.
We've been very fortunate...don't even know anyone who caught Covid (not yet).
My dad yes, much the same. Still inpatient for rehab.
Had a call from there Sunday to inform me he fell. A couple of abrasions on his too fragile skin. But no worse for the wear.
Story goes, CNA stepped the 4 or 5 steps to the bathroom to empty his urinal and he tried to get up out of his chair, fell.
His story, he slid... was too close to the edge of the chair, slid to the floor below.
But this time... no major injury.
Sorry that dad fell---but I know you are smart enough to see that this is the continuing slid downhill for him--and despite PT, he is not gaining strength, possibly not even maintaining much.
The goal of his PT is probably to keep him from deteriorating faster--but I don't know for sure.
The fact he cannot stand alone and tries to get up without help is telling.
And, oh, those skin abrasions! Sometimes I think they are just too much, on top of everything else. MY FIL had several on his arms, as he'd try to get up and either slide to the floor (usually flailing around trying to grab something) and simply bump into something hard. Their skin is like parchment paper. FIL was covered in Neosporin and gauze all up both arms. And then I had to change those dressings 2-3x's a day. His never healed, not one iota. One day I was changing the dressing and he commented that he looked like a mummy.
It's a very undignified way to exist and FIL was so mortified by it. He tried so hard to hide his illness and those arms swathed in gauze--plus the fact he had a large melanoma removed on his fore head that never healed--he looked like somebody was beating him up.
Does your dad still think he is going to get to come home? It seems less and less likely as time passes.
I know this has been hard, getting back into the fray after being essentially incommunicado for so many years, but when he passes, you will be able to say you did your best for him--despite the years of neglect from him. That's super admirable!!
Hugs to you, lady.
Of course, I know that whole rope all too well. I'm not fighting him, he knows my thoughts.
Had a conversation with his PT team member, .. as to progress or .. lack thereof .. and what is ongoing.
PT guy was on the phone in my dad's room, and on speaker phone so .. dad could hear all the conversation.
PT guy indicating progress is slow but steady .. and that they are working on, I can't remember the term . but something to do with motor memory or something of that sort. Has to do with .. I guess for most of us .. the whole transitioning and how to plant one's feet . be that getting up, be that sitting down . be that to begin the process of forward movement as to walking, for most of us that is just innate .. we seem to know it intrinsically . and don't have to give it any thought .. we go to get up .. we plant our feet and off we go .. we go to walk, we plant whatever foot in front of the other, and off we go ..
His seems to be a struggle in .. the memory . motor memory or whatever it is they termed it, .. damaged. Said his feet get get tangled when walking even .. as in .. we all just .. one foot in front of the other, we don't even have to think about *oh wait, if I cross that foot there, that's gonna trip the other foot* .. we just do it.
Working on strength .. and of course, the normal walking and that motor memory stuff.
Said to me there are no imminent discharge plans at this point .. and that the hope is to get him to the point he can transfer better than is presently seen . from sitting to standing .. so on and so forth.
Asked me .. my input as to going home and what kind of help is there. I weighed in .. "he knows that my thoughts are that he should not return home . his wife has dementia . that is his sole c'giver . and she's not able to adequately care for him. Ultimately his decision".
At that the PT guy turned for dad's input . and dad weighing in .. "oh well I think I'd like to go home for a little while and then maybe see where I'd like to land as to being in an ALF".
PT asking if I heard that and I responded I did hear him and provided further input .. "It's my opinion .. home is not a safe discharge for him .. I mean there's always an option for an in home 24/7 c'giver and I would think that to be absolutely essential . but PT guy ... to be honest with you . his wife and her dementia .. she doesn't possess the cognitive ability to understand/comprehend that she can't adequately care for him .. and at the same time . there was a c'giver brought to bear on site, but his wife is very territorial as to him . and his welfare . and without any ability to realize that she's not able to do what is needed as to his care .. it's not a safe discharge .. that's my opinion. My experience speaks to, . she won't allow it .. she thinks she's fine to service his care .. and she is not .. but she will .. as she did in the past, create enough ruckus that the c'giver is dismissed".
PT guy then asking of my dad .. "did you have a c'giver in the home at one point .. and how did that go?".
Dad then answering .. pretty much affirming what I described.
PT guy then weighing in: "Yes, .. well we have to see just how much of your mobility can be restored, . and we'll continue to work on that .. and we aren't at all out of time here, . but there will be a meeting tomorrow with the PT supervisor and medical staff and your progress will be noted, . and there I'll make note of some of this . so that it can begin to progress as to what will occur as to discharge when that happens . but I concur with your daughter, you probably shouldn't plan to go home . at all .. if it's going to be a situation that meets with consternation and argument as to having a 24/7 c'giver on site, . . it's my opinion that will be critical as part of going home"
with that I just weighed in that my dad had shared with me there is staff person on site there .. who had indicated they'd be happy to cart him to the different sites there on campus . as to ALF and so forth for his viewing .. and that yes, I would be interested that take place on his behalf.
PT guy asking me of my awareness as to resources to pay for such and my answering that he does have LTC policy but it's bene's .. not known to me . and that he does have the resources to pay for such.
PT guy then answering that .. with some more dialogue that he'd make sure some of this makes it's way as to the various modalities meet and discuss progress and planning, etc ..
That about summed it up.
I don't fight with my dad over it, if he goes home . that's his decision .. I'm against it, think it's a really really supremely bad idea . for a lot of reasons.
But .. his decision ultimately. As I've said before, .. I've learned thru a lot of knocks on the head with all this thru the years .. I also don't have to be there to pick up the pieces of bad decisions and I won't be.
The last time he and I had any real conversation on it all, he was asserting that he thought he could maybe lean on his wife and make her understand that he will be in need of a c'giver on site and she'd be agreeable. I don't see it happening that way. Oh sure, at first perhaps .. but over the long haul . that territorial instinct will over-ride any reasoning as to having a c'giver in place and the same ole same ole will play out . .c'giver dismissed . he at her mercy . and there you'll have it.
All I can do is voice my opinion where solicited and that I do.
It's very interesting hearing him talk. I mean for one thing . there are meals brought to him 3 x's a day .. that he actually appreciates/enjoys.
You see, when he lived at home that wasn't going on. His wife .. someone who has fought weight battles all her life .. but now .. now that she's post heart surgery and whatever that all did to her, . it also took away in her any appetite at all, for the last year. She has dropped weight like crazy. But couple that with her dementia .. that has her in some other space most of the time .. eating ... and no appetite of her own really ... and no realization that he isn't able to do that for himself .. she just wasn't fixing him meals .. on any kind of routine basis. He, who has been underweight all his life.
He's now in a setting where well rounded/balanced, nutritious meals are brought to him 3 x's daily and he has an appreciation for it . and actually partakes of said meals.
He was most annoyed at the fall that occurred .. just so annoyed .. that it was being made such a huge ordeal there. They brought in mobile xray .. just as a precaution to check on . make sure there were no fractures .. doctored his skin abrasions ..
He has numerous skin abrasions from all he's been through . with hospital stays . but not only that, . w/him . and his fragile skin, turning over in his sleep and bumping his elbow on the bed rail . can result in an abrasion .. and so . he has bandages all over him .. that they routinely change and re-dress.
If he's in pain .. he asks for a pain pill (as he was after he fell) and it's dispensed, . and not with a bunch of hoopla that his wife throws at him . that he's "addicted" to oxy (which has been mentioned by me, .. numerous times in all of this and each time the answer has been . that's not seen . that he is abusing pain medication) .. so she's out to lunch on that topic . which I suspected anyway.
But my point is . he is well cared for there, . and attended to ... with the care he needs .. requires. And .. not only that, .. sees it/acknowledges it, recognizes it as such ..
And so it's astounding to hear him talk, and the appreciation for all that is done as to his care/needs .. and his acknowledgement of it ..
But yet .. wanting to return to the home. Go figure.
There's no place like home.. 😊
ALFs are allowing people to come tour them during the pandemic? I'm surprised. And does the staff person make all of the arrangements, including transportation? I don't think your father is ever going to get to this point.
And I think everyone knows that if he manages to get himself discharged to home, he has no intention of trying to find an ALF after that.
But .. it's all on the same campus.
No, I can't go in at all, to anything there. No one can.
Staff however, .. could wheel him around in his wheelchair to see various facets of what they offer. Staff there are routinely Covid tested . .as have been all that arrive there (including my dad) prior to their arrival.
I don't think my dad will rise to the capacity of being able to do ALF .. but .. I'm not a medical person, nor trained to know what that might look like. From what I know of ALF's ... from the MIL end of things .. they are varied in that, .. many of them offer ala carte .. the many add-ons .. an individual might require. Med management, .. someone to manage his doc appts, etc etc etc.
His mobility at this point .. so so poor ... I can't believe they'd allow him to be there .. he can't ambulate . in and out of bed/chair on his own without assist .. much less even get around on his own in a wheelchair.
I guess we'll see how far they can bring him as to his mobility in time.
He called me yesterday evening, ... kind of in a twist with the fact, sounds like his wife got a call from the cancer doc (who knows, she gets her wires crossed) .. they want him to get an xray prior to any continued appts there with the cancer doc.
My response: "Dad, . that's way down on any priority list at this point, .. you are in a rehab setting that is not going to allow you to be carted out of there, without you are then going to be quarantined upon your return, that's how it's working now .. you leave there to go to any doc appts .. then you will quarantine when you return .. no PT, etc . which is the very basis for your presence there".
Dad: "We'll have to look into that, .. I know that the last few times I went to the cancer doc that they wanted an xray .. I'd gone to "x" place, and it was a lot more convenient .. and so that's where I'd like to go if you can get that lined up".
Me: Dad . you can't go anywhere . not right now .. not while you're there inpatient at rehab . you can't be carted out .. you'll have to quarantine upon your return there .. "
He wasn't getting it .. wasn't processing.
The very reason(s) it would've been so much better had that DPOA gotten done .. I could've made it clear to all docs .. don't call his wife .. she's out to lunch mentally .. call me.
I don't mind handling that kinda administrative stuff .. but .. now will have to kinda go behind some of that and contact cancer doc to make it clear to them .. (and who knows if they called stepmom . and if they did what it is they wanted .. chase down that rabbit hole) .. and get it straight with them . the cancer tx . is on hold .. for the immediate future ..
Has to be. No other way around it.
"I know that the last few times I went to the cancer doc that they wanted an xray .. I'd gone to "x" place, and it was a lot more convenient .. and so that's where I'd like to go if you can get that lined up"
There's that expectation that you will have to get it arranged. He really doesn't get it, does he?
It will be so much easier for you not having DPOA, so now you definitely can't take care of the minutiae of his life. I can imagine how the mad scramble for the LTC paperwork is going to go. And I bet that once your father sees the cost of the ALF (or whatever) before the LTC policy kicks in, he won't want to spend that kind of money.
So, my point is, there was some "awareness" on his part, . that LTC policy has a waiting period .. and in that waiting period . his wallet comes into play to satisfy that cost. He had some awareness on that topic .. lucidity clearer at that moment .. and not only that, .. that he didn't think it terribly exorbitant.
But fast forward a week later .. whatever it was . and that convo ongoing .. with the PT guy on speaker phone with me, and he imparts this supposed "Well I think what I'll do is plan to go home for a little while, and then make a decision as to where I land".
So ...
Who knows.
Not what I vote for .. going home. But .. he's gonna do whatever suits him .. and I'll do the same as to what suits me.
More likely he'll be kept where he is because he will never qualify as a 'safe' discharge' and even if he could talk someone into taking him home AMA, he'll be back within days if not hours, having fallen or some other trauma.
As far as the Xray for the cancer doc--don't they KNOW he's been in a hospital setting for ages? This speaks of lack of communication for sure.
The LEAST of his worries at this point is the cancer. The man can't stand and is being re-trained how to walk!
I remember so clearly my grandmother who, in her last days on earth, was completely bedbound in a NH. She couldn't even FEEL her feet or hands. And the chipper little PT girl would come in "OK, Alice, we're going to have you up and walking the halls today!" I gave her credit for her perkiness, but outside in the hall..I asked perky PT if she was aware Grandma had a bedsores on her tailbone & hip that went to the bone...and that she had almost no circulation in her extremities and telling her she was going to be walking the halls 'in preparation of going HOME!' was just plain ignorant and mean. Perky PT just had the one job--get the patients ambulatory.
Mom had to step in and use HER POA to get the NH to basically leave Grandma ALONE.
I KNOW that's the job of the rehab places---but really--at some point--it's simply torture.
Don't know if your dad is there yet, but the fall he had a couple days ago--those are going to continue. No way can K take care of him. And no way should YOU be doing it, either.
It IS kind of a blessing that you do not have DPOA. You can stand by the sidelines and go 'well, dad, OK if that's what you want' and watch the plans fail.
Dorker's already said that she would take her father back to his home, even though she doesn't think it will be a good idea. I've been thinking that someone who has HCPOA should not participate AT ALL in any plan to facilitate what essentially is an unsafe discharge, even if her father is still deemed to be mentally competent. If she were truly to be making decisions best for her father's health and wellbeing, she wouldn't make a decision to drive him home.
He has to be assisted, full assist, to get out of the bed/chair and onto walker, . but from there, can walk, 20 feet. And they continue to work on strength and so forth to I guess build upon that.
He has to have assistance, full assist, to get back into chair or bed.
His skin is so fragile . it's like you said before, like parchment paper .. just the slightest of a bump .. we all bump into things or walk into something all throughout our day and our skin withstands it, not him. His is just tissue paper thin .. and so marred.
Yes, if he were to go home today .. AMA ... if he could somehow get there, he'd be in the floor in no time . and likely injured.
H377 for that matter . we all know I had backed away in larger measure before all this fell apart with these .. several weeks now of hospitalization and back and forthing between rehab and inpatient hospital stays.
I wasn't on scene in large measure there .. and he had atrophied badly . in that time frame. The in home PT having run it's course .. and the outpatient PT that was supposed to have then been fired up . never got seen to.
He had fallen in the few days before I'd gone there and found him with what was evident to me, as a UTI ongoing ..
He had fallen in the few days before that and it sounded as if it was a mighty struggle that took quite some time .. for his wife and he both to work to get him back up again.
Falls .. routine anymore with him ....
As I've seen with MIL .. thru the years and the whole fall biz . somehow they don't end up badly injured ...
UNTIL .. they do ... and ultimately I guess they all do .. in the end, . in some way or form . .get injured (the skin for him is always an ever present issue in a fall .. ) but I'm talking serious injury as in broken bones. Not yet .. that hasn't occurred.
Just a matter of time though .. pretty certain of that.
I think it's a mistake to go home .. and no . he isn't (not at this point, and it's doubtful that will make much improvement) ambulatory enough to be loading into the car for "well today let's go look at "X" site and see what our thoughts are", and "tomorrow we'll load up in the car and go look at "Y" site and see how we like it".
That isn't possible with him .. far far too compromised and feeble to be doing that, unless there is loads of improvement.
And something that hasn't been mentioned in all of this ....
Covid.
He was tested before he was allowed entry to where he is at present ..
We all know, transitioning from the setting he is presently .. which is a temporary stay of rehab/PT . and into .. from that setting .. onward to LTC .. and at the same site .. the wheels get greased a little easier, .. if one is already there on site. And the site where is .. (I haven't seen it fully, they don't let anyone in . because of Covid) .. but appears to be suitable and by all his says .. it seems as if they are attentive enough for certain.
But .. if he were to go home . . let's say he somehow miraculously improves enough that home is his option . and there he goes.
You can take it to the bank they won't take him . any of these settings . from home. Covid . being the reasoning.
Count on it, ..
Hasn't been mentioned in it all, ..
We aren't at that juncture at all with him .. discharge planning hasn't even gotten fired up .. at all.
But .. that needs to be mentioned also.
Not that one . if they're able to go home and ambulate and manage .. and have the available help there .. should go into some setting as to LTC .. simply because of Covid .. "Well I'm here, better grab that spot while I'm here" ..
But .. it's dubious at best to think he'd be able to return home any way shape/form . and to do so, will surely negate any further plan to go elsewhere, due to Covid.
He's tanked a lot since you began posting about him--having back in your life. Of course, the cancer itself is awful and the chemo for that is brutal for a 'healthy' person--it often causes more problems in the elderly than it's worth. (The very reason I have already decided when my cancer returns I will not treat it. I'm a 'one and done'. Won't put my family or myself through that again.)
COVID hangs like a big dark cloud over everything these days. And FL just had quite a spike, so they've likely not moved into a less restrictive phase.
Your dad would not survive COVID.
Maybe it's best you keep your conversations with him light and not make ANY plans---at this juncture, any 'promise' you make him as to taking him home are piecrust promises--easily made, easily broken.
The criteria for him to be considered 'ambulatory' are kind of a joke. Walk 20' and be able to get out of and back into his wheelchair. Wow. That's a pretty low bar.
So--due to COVID, even IF they'd release him into the 'world'---he wouldn't last long at home, with K in full swing. The back-and-forthing of elderly people into and out of long term care is not working the way it used to.
I'd just listen to him, out of courtesy, but make no plans with him. He's still a long ways away from being a safe discharge, I don't even think you need to let it take space in your brain. You have a ton of 'real things' to deal with. Put dad on the back burner, if you can.
If I get input from the powers-that-be, I weigh in with my thoughts/opinions .. and in his presence, ... (not there on site, can't go there, I'm speaking of phone conversations that go on). I'll continue to do so ...
I don't argue and persuade with regard to talking to him .. I've said it repeatedly . and if he chooses that as his option . he can sort thru the consequences of that choice.
Long time folks here will remember MIL's 94 yo sister that had a heart attach a couple of years ago. That same sister passed away this past Friday. The only remaining sibling MIL had, is now gone.
Sad for MIL. I remember my granny who was 90 when she died, and had outlived all of her 5 siblings, and her talking of how sad it is to be the only one remaining. Feel bad for MIL in that respect.
And on the front with my dad. Sent back to hospital A.G.A.I.N.
Chest pains, suspected heart attack.
In the end, not a heart attack, but .. some "area", "lesion", "mass" (unclear) on lower right lung, via CT.
It was thought, possibly pneumonia .. and put on antibiotic .. but may be a mass ... the later can only be determined via PET scan which they indicate will have to be done outpatient .. and him sent back to rehab.
So .. I don't even know
This isn't someone who is a 20 yo and we can just load him up in the car, for said PET scan appt when and if that gets set up .. (and really what's the dam point, .. I mean it). But I guess it will take some coordinating with the rehab site, and as to appt and transport, and what to do about their "rules", which are ... they are really really resistant to transport out for "ANY" appts .... as doing so puts one at risk for Covid and these places are sealed tight, .. and so if one has to be carted out for an appt .. it's met with a return requiring quarantine of 14 days ..
So, I don't even know how to navigate any of this. Haven't even begun to give it any thought.
Realize very much that it's a personal decision one makes, .. and should be without persuasion . but sure do wish that my dad would kinda sign on for Hospice and realize that his days are numbered. Doesn't seem to be his approach at all. Won't even sign a dam DNR.
Just .. with him, it's one hit after another.
I wonder if his cancer has returned? How long since he's had chemo (or was it radiation, or both?)?
If the rehab is resistant to transport to outside, expect them to put the need for your father's PET scan on the back burner. Even if he hasn't acknowledged that he's close to EOL, they know it.
As HCPOA, it's your choice as to how much to bug them about it, if your father can't.
Since dad refuses to appoint a POA, and won't sign a DNR, and isn't going to, he's on his own.
BTW--ARE you HCPOA? I thought you never got him to sign anything giving you power to make any decisions for him.
Having had 2 Pet Scans, they are important in really dxing what's going on with the cancer. BUT--they are done in-hospital.
You ask the doc if it's really and truly necessary to have this test done. If they're just being good to their professions, so to speak, and there really isn't a super pressing need for the test, I'd encourage dad to go for the CT instead.
Did he ever 'clear' the cancer? Or is it just simmering away in lieu of all his other issues?
My FIL did not EVER believe that his leukemia was fatal, until his doctor told him, to his face, in VERY understandable terms "L, you are dying. You don't have weeks or months. A few days. Period. You fought a valiant fight and you can gracefully accept this or fight it. But you are going to die." I don't think it had EVER occurred to FIL that he would die.
Your dad is sadly suffering the consequences of his own actions--which we all do. He really has no one but you to lean on--maybe your brother a little.
Even if he DOES get the Pet Scan, it probably won't affect the outcome of his TX, going forth. He's dying, you know it, he probably does but cannot accept it.
I hope you keep your distance, physically. It's a sad time to be elderly, sick...and alone.
that’s what you want. I’m sorry he has to go through this, but I’m really sorry you have to do it Dorker.
Takes about 2 hrs, but must be done in the hospital. I don't know why they'd subject this poor old man to any more tests, but, hey, why not, huh?
Maybe Dorker needs to enforce her HCPOA and say "no" to the excessive testing. Up to her, really.
I know last year, .. when he was hospitalized, there was one .. yes .. and that one I was given a copy of, that was more than a year ago.
Then fast forward to this year, . .and the maladies that have besieged him.
In the last six weeks or so he's been in and out of the hospital I think 3 or 4 x's, I've lost count. One of those, .. it was said to me that he'd signed for me to be HCPOA ...
I, upon hearing this news, .. "oh really, wasn't aware of that". Explained he'd done so prior, about a year ago, in a hospitalization and was told, .. "yes they are only good for twelve months .. so he signed a new one".
I've never been given any copy of it, . .and where it exists and w/whom . not known to me.
I did call there yesterday, to the rehab where he's inpatient. My intent was to try to speak to the CM on the issues. But I landed on the phone with his nurse. Conversation went about like this:
Me: My dad, discharged back to you guys, .. the findings there, if you have the documents .. they saw some area/lesion/mass .. something, lower lobe of right lung. Wasn't clear whether it was pneumonia .. or maybe a mass .. weren't able to determine that from CT . .and so they put him on an antibiotic . in case it's pneumonia . and they instruct he is to have a PET scan .. to try to zero in on what that is. A couple of things here .... first off .. one of his recent hospitalizations . he had fluid building in his lungs and so that was being monitored and so they could do an aspiration so I'm sure if you call hospital "x" about his stay there, there at CT scans there, to use as contrast as to what these most recent CT scans show as to some *area* that now appears in the lower right lung ... that's first. But beyond that .. they weren't able to do the PET scan inpatient . said it's done outpatient and there was no need to keep him in the hospital and so bounced him back to you guys with instruction it should be coordinated with is oncologist to get a PET scan ordered .. and so .. a couple of things there. First off, the guy is not at all ambulatory .. I mean they act like it's about like loading up a 20 yo into the car . it's not .. and so .. getting all of that, the logistics of it all, .. will take some coordination with you guys there as to transport, etc .. but beyond that ... I don't know .. I mean .. I realize this is a personal decision no one should ever lean on anyone to sway them. But .. let's say we get it lined up for a PET scan and get that done, and it shows suspicious for cancer, .. . that will then entail a biopsy ... and .. what then ...??... infusions ... I mean .. the guy was doing that, but has been for weeks now, . knocked further and further and further back with one malady after another, to the point he's so weak he couldn't withstand a biopsy . much less chemo tx's. I don't know, .. I mean I haven't had opportunity to get a read from him on what his wants are .. but if it were me, .. this would be back burner'd, not to mention that he'd be quarantined upon return from above . and the whole purpose of his being there is to do PT".
Nurses's response: "yes, as you're talking I'm looking here at the report that came in .. and see that is what was wanted ... I'd have to check or have the CM ck .. to see if his insurance would even pay for PET scan .. and I mean transport, that would be on his dime .. and I hear ya .. on the whole .. he can't withstand all that. ... I guess the thing to do is to, I'll run this by our MD here ... and maybe talk with him some to get a read on what he wants to do .. and ya know, as to the quarantine .. what we do is quarantine them for 48 hours and run a couple of Covid tests on them ... PT personnel does come in, to their room, for that 48 hours to work with them .. and so the PT doesn't go completely away .. but they can't leave their room for PT ... so they work with them in their room, .. once that 48
once that 48 hours is up and a couple of cleared Covid tests . then they're free to resume what was typical for here, .. and go to the PT room and so forth. But I'll check with our MD here, . . talk to the CM .. and talk with him some".
That was about how the conversation went on it all.
I tried to call my dad, was gonna try to run some of this past him who is .. yes ... very very very weary of it all, .. (but apparently not to the extent that he's aware/ready/cognizant ... as I said to him .. "Dad as long as you indicate you want to live .. and that's what you indicate . they're going to continue to .. as you say .. find things wrong and try to fix them ... ). I tried to call him . my goal there, to run some of that which I said to the nurse, past him . and get his read .. and I couldn't get him, typical. I don't know, ... seems he can be in his room, but doesn't answer the phone . as I've called before, and the nurse indicate he's in his room . and even go into the room as I call again, and the nurse pick it up .. and I reach him that way .. outside of that .. most times calling him . it rings into infinity and the reason can be .. he just doesn't wanna talk .. or he's out of the room. Yesterday's attempt . same. Couldn't get him on the phone.
I didn't call the nurse to dial in on "why can't I get him" as I had other irons in the fire .. and so went on with what I had on my radar and left that on the periphery.
I don't know why the dots don't get connected. Maybe some cognitive impairment .. maybe the will to live/live/live .. at any cost.
But I know he is so so so weary. But to hear him talk of it, . it's like they "find" things wrong .. to bill the insurance company.
Maybe some of that goes on .. but indeed there are things wrong . and unless you indicate "I'm done .. send me to hospice, I'm done" .. they're gonna keep trying to fix what's wrong . that's how it works.
I mean . last week (and still on the radar to be addressed) this before, the trip to the ER for chest pains. Call from there . concern . his leg wounds (had so so many sounds .. but with his tissue paper for skin .. a wound can occur just resulting form having bumped his arm on the bed rail . now he's got a bruise/abrasion and bandage and removing said bandage rips that tissue paper skin of his) .. .but leg wounds .. things such as bumping his leg getting in and out of bed (with much assistance) or into and out of the wheelchair .. anything . just the simplest of things ..
Him now with leg wounds .. pressure sores on his heels, both of them ... (likely from feet resting on footboard) .. and .. the problem he had a couple of years ago .. is perhaps reoccurring .. suspect osteomyelitis .. bone infection. He had this a couple of years back and they ended up having to take a piece of toe bone out .. and .. the wound wouldn't heal .. had to have a wound vac .. and so forth .. and that same thing is now reoccurring.
Sore on his toe that won't heal .. and isn't closing .. and the wounds .. and so forth. The path forward as explained from last week's phone call from a doc there ... they're going to be investigating whether that osteomyelitis has returned .. and if so, it may be they have to take an additional part of the underside of that toe bone .. as well as, those leg wounds that aren't healing . they're going to be doing a doppler as to vascular issues .. occlusion ..???.... and if so . there is some kind of bypass thing .. much like a heart bypass . that can be done as to the legs to help improve blood flow, to help healing.
That was last week's .. before the detour he took yet again, to the ER for chest pains.
So ... talking with him .. and him so weary of it all, his words: "I'm just so tired, so weary .. there's one thing after another, all the poking, prodding, testing .. they keep finding things wrong .. maybe to line their pockets from insurance billing ... ".
Me: "Dad as long as you live, and
and continue to indicate you want to live . that's going to be the case .. they're going to try to fix what's wrong .. that's what they do .. you know the alternative .. you can tell them you're done . and it all stops . but .. that's up to you. That business with your legs/toe .. so forth . they have to look into it .. I mean that toe . that wound that would close/heal .. that may be that bone infection again . and .. if they don't arrest it ... it could end up with you loosing a toe .. or your foot (no he's not diabetic) .. I mean .. they have to .. they have to look into it .. and the vascular issue as to whether there is an occlusion there impeding healing on your leg wounds . they have to .. they have to look into it all, unless you just want to tell them you're done .. done with it all, and sign on for hospice".
You get a nod of .. "yep I know" .. and that's it.
So, .. I dunno .. I mean . now the "area" in the lower right lung .. maybe it's just pneumonia .. maybe it's more sinister . but that too .. unless you wanna throw in the towel (and I think he should) . that too will be more poking prodding and so forth . and for what .. you can't withstand a dam biopsy . much less the infusions ..
As to his prior treatment for that cancer, . he'd been taking infusions for the last year .. and the tumors . two of them . were all but dissipated.
BUT ....
He hasn't been able to be participatory in anymore infusions .. (and from what I know from the cancer doc ... from being there on site .. the few times I also attended) . . he would be doing this for the remainder of his life .. these infusions . which were now down to every 3 weeks from an all time high of weekly to begin with. The explanation the oncologist had given when asked, when do the chemo tx's stop .. she said .. "you'll do these for the rest of your life ... unless you tell us to stop .. and in which case, we'll follow you if you want . and sometimes the tumors don't return . sometimes they do .. in which case we can resume the infusions .. or you can decline . but you'll do these the rest of your life, every 3 weeks".
So ... he'd missed his last infusion that he was to go to .. had been too ill w/what turned out to be a raging UTI .. and that coincided with one of his infusion appts and he cancelled it . too sick.
From there forward .. he's been in and out of the hospital 3 or 4 x' with various maladies in it all, .. all commencing in that UTI and the Sepsis that resulted .. and from there a host of other issues that have found him detoured from Rehab to yet again, inpatient in the hospital .. 3 or 4 x's now, and so ... no further chemo infusions have transpired.
Now he's got that "area" that showed up on the CT . that they can't dial in on precisely .. is it pneumonia . well we'll throw an antibiotic at it .. or is it some other mass/lesion .. we'd need a PET scan for that . .those are done outpatient .. and so .. no need to keep him here . .and so bounced outta there he was, and back to the Rehab site .. and me taking up the issue in conversation with his nurse yesterday.
That's if, "But I'll check with our MD here, . . talk to the CM .. and talk with him some" ever happens. You might have to be quite assertive to ever get that to happen.
I remember your mentioning your father's wound that wouldn't heal at some point. And if that's returned, it is going to further hasten your father's decline.
Do you think your father will ever get to the point of accepting the inevitable?
Watching him .. sound asleep .. laying there, so emaciated with all that he's weathered .. mouth gaped open .. asleep .. gasping as he breaths .. and old .. so so so old and decrepit
I looked at him in that state and pondered to myself, .. "wonder if he'd accept that he's not going to recover from all this if an actual doctor said to him and gave him the news".
That book that I read back a few years ago at the start of all the MIL struggles .. Atul somebody or other. About the poor job docs do with dealing with the fact, we're all going to die ... and giving patients the option of just that ..
It's almost like no one sees .. these healthcare folks .. they don't see the objective view that I see. He isn't going to recover from all this to any semblance of any QOL ...
And it's all for what? More poking/prodding/procedures, more ailments/maladies .. and .. for what. There is absolute negligible QOL at this point and getting worse, .. but by all means . yes ... let's proceed with this test, that test, . so on.