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Dorker; Are you anywhere near where that plane went into the river? OMG?????!!!!!

Hope dad is feeling better.
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Yes, other side of town from me.
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My dad was moved out of ICU late this afternoon.

Today was better, my observation anyway. Thus I suppose how he rated being moved.

The swelling in his face, neck and upper chest subsiding more.

He had asked yesterday to not see Pathology or Oncology .. his words ...he is too sick to process any of it. I concurred. I think even today, he wouldn't really have been of any ability to process much about it.

He is vaguely aware of a dx of cancer but not much more and thus far doesn't want to talk about it.

Originally, before I got there, yesterday AM, Oncologist came by and he waved her off, telling her he wants to wait until his daughter is there. Oncologist left. When I got there, the nurse told me this, asking did I want them to request another visit from Oncology. I answered yes. But when I saw my dad he asked of me that we not talk about any of it today. I told nurse I'd talk to Oncology outside his presence.

Much as I figured would be the case, she almost apologized for coming at all as not enough of the whole picture is in yet, awaiting Pathology results. Said their group always sends one of them by, even though not all is known yet, just in case there are questions.

She cant ... not yet .. absent that Pathology report, provide much info as to what paths are options .. should that be his choice.

Eexplained that isolated to that one mass we already know is cancerous... there are treatments .. options .. some not really all that grueling. But the other two pieces, the mass in the lower lung, lymph node involvement ... worst case scenario .. metastasis to liver/bone ... changes the approach and most dependent upon his overall general health as to whether he is even a candidate for the aggressive approach needed.

But prefaced all the above with the fact we cant get ahead of ourselves ... have to get the bigger picture in from Pathology.

Kind of figured that's about what would be said.

Was glad Oncologist agreed with me in pushback with my brother and bossy boots. They had already pushed me that he cant just "kick the can down the road, this has to be talked about" to my response to both of them "of course but at this point were about 12 hours out from his collapsed lung, he is struggling to even breathe, there's too much not yet known .. why burden him at this point with problems we have no clear path to direction on ... let him get past the collapsed lung and get stronger, let Pathology come with more info .. I disagree ... the can .. it can be kicked down the road for now"

Brother and BB then approach Oncologist upon her visit ... same mindset to her response "your dad is pretty darn sick right now .. we don't really know enough yet to give him any all inclusive info and he's too sick right now to even process much of what's said to him, we've got time... let's let him get a little better and wait to get a broader picture via Pathology".

Yes!!!!

Really incensed me, considering how sick and out of it he was at that point. What? Tell him "you have cancer dad ... no we don't know yet how bad .. do you want to fight it?

Expectation someone in dads state could even begin to process the above ... cruel to say the least. IMO.

I spent most of yesterday there and it's good I did although not sure I was any help. He had a particular segment of time it was acutely a struggle *more so than the rest of the time* a struggle to breathe. All his stats were ok ... I buzzed nusing staff ... they checked him .. nothing amiss ... they called re respiratory... a breathing tx administered .. didn't seem to help ... ICU doc summoned .. nothing found ...

Still don't know what caused that particular distress but it eventually waned. Its always laborious.. his breathing .. but this was acutely more distressing ... whatever it was. No cause ever found.. but it ultimately waned. Doc said it's the chest tube .. but that's there all the time .. so still not clear how that was cause.
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I wonder if that breathing episode was from a bit of panic or fear. Glad it settled down.
As for Bro and BossyBoots, what a pair. Goodness, the stuff you deal with! Glad your wisdom prevails. Take care!
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Maybe that was it, a bit of fear or panic. Not like he'd been up and running wind sprints.

I know that anxiety/worry is keeping him from getting any sustained rest these days.
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Dorker, make sure he's getting something to help him sleep at night. Discuss possible anti anxiety meds with oncology. (((((Hugs))))).
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Thanks Barb. I did discuss that yesterday with attending Hospitalist.

Apparently Hospitalist wrote an order for Ambien if requested. By what nurse reports in my phone call there, he rested more comfortably last night, having received Ambien.
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Oh, Dorker, this doesn't sound good at all....

But how wise to wait until dad can make heads or tails of what is going on to talk to him. '

I am old enough to remember the days when the PATIENT was not told of their own diagnosis. Seriously. Adult people who were not told they had cancer, or COPD or whatever. It's unconscionable.


Your dad should 'rally' back from what turned out to be a rotten biopsy experience. That's the worst reaction to one I've ever heard of! But he should settle down and swelling will go down. (That was the scariest part of DH's liver transplant--he swelled up 40 lbs in excess fluid in 36 hours--horrifying to see).

Yet it went down that fast too.

And s breathing tube to keep the lung inflated is very uncomfortable. Sounds like your dad is not one to refuse pain meds as needed. I can see that causing him a lot of anxiety....and that's easily dealt with.

I guess BossyBoots WILL be present when the dx is presented to dad. It is probably inevitable. I was with my DH for EVERY dr's appt for his dad. He wanted me there and dad did too. But I'm not a BB and I think having me there was actually helpful as I took copious notes.

Well, it is what it is. If the cancer has spread as far as the bones and lymphatic system.....your decision on TX is pretty much made for you. I wish you luck in hanging on and being strong for dad. You and brother find a way to work together.

Hugs & prayers for you today.
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Hi Dorker
Glad to hear your dad was moved from ICU.
A room is much better to have him return to some normalcy and to gird up for the news he now has to deal with.
He is very lucky to have you as an advocate.
I hope he is able to be moved to rehab soon to shore him up for whatever his future holds.
He must miss his wife if not the responsibility of her care.
I hope you and DH find comfort with one another as you manage this phase of your lives together.
I hope the rest of the family can hold steady for a bit and give you a chance to catch your breath.
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Tomorrow will be the wait for Pathology ... so I'm sure I'll be front & center as that news comes.

Not sure any break for me comes anytime soon.

Interesting that DD reached out to my brother and BB today (maybe some of it self serving, but also... she no longer sees her mom and grandma to her kids and sees how tired I am). DD's angle, request they consider putting their heads together to come dad-sit/advocate/hospital sit for a day as she's seen her mom do now for the better part of two weeks.

Didn't know she'd done that but no I don't mind.

Not that I think for a minute my dad would rather weather all this with my brother and BB as his advocate and helper. Probably quite the opposite. He'd probably prefer his wife K first .. but her unavailable at present .. I'll do as a close 2nd.

My brother and BB, my dad might prefer the homeless guy on the street corner in order of preference before them (an exaggeration but that's the jist of it).

But yea it'd sure be nice if the two of them would ring me up "hey Dorker ... we know this has all so upended your life... we'd like to set aside a day .. and we'll come that way and you go do what you want".

I would so appreciate that.

DD reached out to request they figure a way to do that.

It's been crickets .. all you hear are crickets. Silence, no response.

Guess not.

Not surprised though. They come every few days .. drive 1 1/2 or so hours to get here. Spend all of about maybe 2 hours, if that, here .. try to make a *showing* and return to their normal existence.

Oh well.

Hopefully someday soon .. whatever course this all takes ... it will settle into some semblance of a routine and the fact my dad is on board for in home F/T care .. will give allowance I can find some balance in my existence.

Stopped in to visit MIL today along with DH.

Seems her complaints at present ... the not so nice CNA's. She readily admits some are nice/caring, others though .. mean (as she defines it). Said one of them fussed at her to get up on her own.."you can do it ... you don't need to call us" ..
Sounds like she runs into this more often than not ... this demeanor from the not so nice CNA's that let her know what a bother she is. As a result she is getting up and struggling to get around with no help ... doesn't ever know if she'll get a mean CNA thus usually doesn't buzz for help.

She is going to fall again. They don't want her doing that!. But if she won't call for help, opting instead to go it alone .. she's going to fall and get hurt again.

SIL there as this dialogue goes on ... between MIL and DH and myself.

SIL chiming in of the number of times she's complained and the number of times she's brought administration in to address what MIL fears will be retribution by CNA's if she complains. Thus she says she doesn't want to complain... will just struggle to do for herself...

Dangerous odds of you ask MO.

They've all told her she isn't to be ambulating on her own. But for the above reasons ... she continues to do that.

Shes going to fall again.
...just a matter of when, not if.

Described another scene whereby it seemed all the CNA's decided to have a henfest right outside her room, laughing and cackling .. to the tune she couldn't hear her TV. In a few ... in came house keeping ..MIL asked her to have the henfest keep it down .. that she cant hear her TV.

MIL describes after that ... the retribution has been marked. Very unfriendly and rude to her, as she tells it.

I asked MIL "are they rude to chatty cathy too?".

MIL: they try to be but she doesn't put up with it"

Me: "well there ya go ... take a page out of her book... do as she does".

MIL: Well chatty cathy is black...all these CNA's are black ... I'm white ... they are just rude to me .. shes black like them so they put up with it".

ME: well tell them "I would appreciate if you'd be nicer and not speak to me in that tone"

MIL: I have ... they just ask what am I talking about ...
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(Cont'd)

Act like I'm out of my mind ... question why I'd even point that out as if they aren't being mean but I'm here to tell ya some of them are, they're mean and impatient and rude.

I don't know the answer
.. and sounds like SIL has gone to bat on all this .. even had meetings inclusive of administration and MIL in attendance. Doesn't sound as though it's been resolved. Maybe it's just that way... don't know.

Wont be me working to resolve it for sure.

Also of note, DD & fam ran by to visit MIL well before we got there. Evident in talking with MIL she didn't remember they'd visited a mere couple of hours prior to our arrival ...not til provoked ... then she remembered.

But couldn't name who it was that came...couldn't name DD or her kids by name...did remember DD's husband's name but not the rest of their names.
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No need for you to be worrying about MIL's issues - you are where you need to be, with your dad.  I wonder if your brother just does not know what to do or say, realizes that his wife is really not dad's favorite person and therefore does not appreciate her presence. Not so much heedless of you, more panicked and unable to admit it.

As for MIL: can't be sure but I suspect that she comes across as rude, demanding and complaining.   Manipulative.  The CNAs would come to resent her attitude. SIL would best work out with admin and DON what MIL can and cannot do, communicate that to staff, but expect that staff will honor those limitations, in return for which MIL will learn some common sense and gratitude.  Has she ever really thanked people for their help? When you have a bad attitude, expect some comeback. Frankly, MIL IS a pest and ingrate and if someone asked me to make nice to her, I would have to think about it.
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I haven't seen it 1st hand playing out. But .. I do know about MIL she would indeed be grateful and thanking them for their help.

I suspect the problem lays somewhere in DH's view as he described it, says before I was there today hearing her complaints.

DH: what she is taking for *mean*, *rude*... is just the fact these folks are busy!!!! They've got a chit job, likely 5 azzes needing to be cleaned and God knows what else. They're BUSY .. some of them will take the time to make nice and chit chat .. some won't..the ones that won't she sees them as rude/mean.

I think he's right about that because what I have seen first hand, numerous times, this person who wants zero interaction with *those people* (old folks, slumpers) ... somehow sees the staff as peers. THOSE are people she'll chat up .. generally young folks, some from other nationalities but always young... THOSE are people she'll chat with.

Ask where they're from .... how long have they lived here local, where did they go to school .. tell about her years and popularity as the sect'y to the dean of women at so and so college and it being during the throes of Viet Nam and how she identified more with those who resisted than her own generation and how unpopular that was ... ask if they have kids, how many ... on and on.

Talking to young people who have probably never even heard of the Viet Nam era and resistance and hippies and such.

Sone will take the time and chat .. some wont. Just as in any situation .. work places, school, etc .. there are always going to be... in any setting ... those more friendly and outgoing and some not so much.

Probably hard for elderly folks .. maybe even more so those with cognitive issues to pick up on the social questions of *lady that's all really boring and I'm really busy".
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Off here in a few to go to the hospital and I guess await what comes from Pathology . whenever, if ever that comes today. Who knows.

I probably should've already been gone . and been there, but having to handle some things here first with regard to work.

I guess in part, that's why these times are so stress filled. One still has their normal life to attend to . but feels the "pull" to be also in attendance at the affairs of the LO .. and ramifications there.

Some of the things needing attending to on my end, couldn't be done til normal biz hours and my ability to communicate with other folks who work normal hours .. I guess .. I had no choice, but to stick here and handle all that, . and so if I arrive at hospital and Pathology has already come and gone . .either my dad will have waved them off, pending my arrival . whenever that can be .. or he will have absorbed what was said on his own .. absent anyone with him (not optimal).

Anxious .. not really wanting to wear this cap .. but I guess it's mine to wear at this point.
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Dorker - thinking of you and your dad today. God be with you.
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Dorker--

whatever today holds--I hope you can have peace and calm in the midst of it all.

And you don't have to make all the decisions about dad's care TODAY. You have some time to think and get 2nd opinions.

{[Hugs}}
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Dorker, you make an excellent point about MIL and her seeing herself as a peer to these young staff members.  Pretty sure they don't see her that way at all and they do have a lot of work to get through. Other people needing attention, perhaps desperately, and listening to MIL talk about ancient history or ask personal questions that are in fact none of her business and trying to figure out how to end the conversation politely.  Sounds like the staff in this kind of situation is not actually mean, just trying to do their jobs.  MIL is the one who is rude, but she would probably never see it that way.
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Just a couple of thoughts/opinions:

Disclaimer. I’m gonna start and finish with an analogy. It’s involves comparing dogs to humans. I KNOW dogs are dogs and humans - not dogs. It’s just an analogy.

I have three King Charles Spaniels. This breed is officially referred to as “the love sponge of the dog world”. In researching the breed prior to getting them, I read an article that said if you get a KCS - better plan on never going to the bathroom alone again. I thought the writer was being facetious. Turns out he wasn’t.

So there I sit, with three dogs sitting at my feet - watching me. If I pet one, I have to pet them all. Problem is, three dogs - two hands. This results in one muscling another out and taking their nose to push their way under my hand.

As I read your post, Dorker - the one about dd calling your brother to ask that he share the load - in order to get some free time for you. You mentioned, Dorker - that it might have been a little self serving... What? Dorker hasn’t been available to give dd a break? Not available to babysit?

Seems to me, Dorker- that everyone in your life wants you to pet them. And you only have two hands. At this time, seems to me - that you’ve got to say “no” to more than the mil situation. One hand to pet your father and the other hand free to take care of you!

My other thought. I call B-chit on mil and the whole “they are mean” thing. First - Mil didn’t want to “bother” staff by using the call button to get assisted to the bathroom. Ummm... cleaning up her poopy azz is so much better then? So, now it’s because they’re soooo mean. B-chit. Mil can’t remember to use the button and/or forgets how to use it, what the button is for and likely that it even exists. As for the staff being mean? That needs translation - from someone who speaks Manipulation. That translates to “Its all just so awful here”. As well - you are absolutely correct - either mil is getting her nose out of joint cause the staff won’t participate in mil delusion that she is a peer and that shes better than the other residents. That - and she can no longer reason that they are busy WORKING and don’t have time to sit around and shoot the breeze with her. Same old, same old with this dog that wants to be petted.

This all is a cluster-eff of a mess. But it’s up to you to take time out for yourself - to find a sunny patch to lay in with a bone of your choosing. That - and maybe close the door and go to the bathroom by yourself.
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Dorker; I hope that things are okay.

I second (or third) the idea that you need to take care of yourself right now. You need good sleep and to keep in touch with your therapist.

MIL, for chrissakes, can be left to her own, or SIL's or DH's devices. You don't need that aggravation right now.

I empathize with DD and her three little children, but their grandpa is VERY sick; his needs are not going to be every present like MIL's--not because he's going to die, but because he's a sensible guy who has money and can hire help.

My best to your dad. And ((((hugs)))))) Dorker.
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Thinking of you & your dad Dorker!!
I hope he’s doing better today & the meeting with the pathologist was productive.

echoing the choir here—make sure you take care of yourself!! Indulge in some self-care. Don’t stretch yourself too thin. You can’t be everything to everyone all of the time. Leave MIL to hubby and SIL. Be there for your dad but remember, it is OK to put yourself first and tell people NO.
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Pretty disgusted there is no word from Pathology. Spent almost all afternoon at the hospital, let staff and hospitalist know when I had to leave, to please call me if the report comes.

Nothing.

Speaking of taking time for me, I drove straight to the ice cream store for a big double scoop cone. Sat there all by myself like a petulant kid, eating my ice cream.

Whatever floats your boat, right?

Then, ya just have to laugh, it's all you can do. Got a text from SIL about the salon appt she'd scheduled for her mom on site at Purgatory (the one day a week it is operated).

I guess someone came to wheel MIL to her appt ...only to line her up in the hall behind 6 others in wheelchairs. MIL refusing to wait thru that ... hauled back to her room. SIL now figuring she needs to sort thru, will they come get her later? Will they see her next week on the 1 day per week they operate? Should she call them?

I didn't even respond. Just scoffed at the absurdity of that as any worry when there are some worried about life/death stuff.

Oh well. I think that might have been the best ice cream I've had in years!
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DYorker, my moms nursing home was about 15 miles from one of the best ice cream places in the North East...Ferris Farms. You can watch the cows while you're eating the ice cream.

I went to see my doc midway through moms decline. He asked about my 25 pound weight gain. I told him that ice cream and white wine were the only things getting me through.

He sighed. (I knew that his MIL with dementia lived with his family). "Bourbon is better" he said.
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Just hugs. How dare they put MIL in a waiting line with others! In her wheelchair they might think she’s not special. Facetious, by the way. The aides don’t have time for one at a time moves. If you want 1:1 care, SIL you can pay for it. If she demands to be returned to room, they are probably not coming back. Narc 101, i am so important that I must be the first and only served. This will be seen as mean since not receiving 1:1 service just when she wants it. What kind of ice cream? In a group setting, you will have to wait your turn. Thursday should be funnnnnn!
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MIL is going to have to WAIT HER TURN TO HAVE HER HAIR DONE? How completely and unendurable is that! Poor, poor thing.

Sorry--that whole thing just rubbed me the wrong way.

Having NEVER learned, either through childhood lessons or example of others, whatever, what is means to be "just a regular person" MIL has essentially shot herself in the foot. Patiently waiting, and oh, I don't know, maybe TALKING to some of these residents as they all wait their turn...that would be completely out of her realm, wouldn't it? And SIL fully supports MIL's feelings she the most important creature in the world.

SMH.

I've long since quite thinking about her in terms of what could be done to make her 'happy'. I think that I am not alone in that feeling. I really, just don't care. I don't care if she doesn't like her roommate or the food or the slow pace at which they come to her call....and I know you are done, too. Leaving only SIL, who will leave this week. Something will happen when SIL goes home. A fall, another broken hip, a re-break, psychotic break--maybe we should start a poll. I can see her trying to get up to get to the bathroom on her own and falling and taking herself back to square one. Also effectively forcing SIL to move to FL, permanently. That is the ONLY way she'll begin to get the care she wants. And she is never, ever, ever going to be grateful and/or happy.

Sounds like she's a big racist to boot. A lovely combo. Nasty temperament and a bigot to boot. That's going to get you great care, for sure.

Why was dad's biopsy not ready? I think you better call ahead tomorrow so you're not running yourself ragged to be with him and then just waste the day. My Dh's transplant drs would come in at 5:30 am---holy Toledo! I gave up trying to get them at that hour and usually chased one down on the floor or went to their actual clinic in the hospital.

Sorry for the stress---but the ice cream was a good soother. I've gained 15 lbs in the last year--just anxiety about DH. I gotta not eat my feelings. He saw his cardio doc who said he was doing just great. I hope he's right. I don't trust anybody anymore....

Keep us updated. I hope the lack of the biopsy not being 'ready' is just a snafu and not indicative of future treatments and hospital protocols.
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Ah, the scales of life - and the balance in it all.

Lets see...

Cancer... Hairdo...

Cancer... Hairdo...

Hmmmm

Thats a tough one.
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And btw - fwiw -

Haagen-Dazs has a line of ice creams out called Trios. There is one - blackberry ice cream swirled with vanilla and a substantial ribbon of crispy milk chocolate running through it.

Seriously - I could happily eat nothing else but this epicurean delight for the rest of my life.

Dorker - good for you for finding a patch of sun and a tasty bone. For times when that patch has to be in your own backyard - give this delicious Trio a try!
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When my mom was moved to NH, she was insistent that I continue to take her to her regular hairdresser. Unfortunately, our hairdresser had moved her station upstairs in the salon, and was no longer able to do my mom's hair (no elevator). When I told my mom this, her response was "well, see what you can do" (translation - make it happen). I suggested she get her name on the list for the next hair day (there were two a week) at the NH salon. She figured I'd create a miracle and get her in to the old hairdresser. Four months passed. Her hair was getting long and bugging her. Still no go. Finally, I suggested that I wheel her to the salon and put her name on the list. She reluctantly agreed. Ever since, the hairdresser now seeks her out once a month and puts her name on the list. I call this the time we played "hair chicken" ---- who was going to cave in first.

Dorker - four words - Blue Bell ice cream. Sigh....
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Oh boy, the NH Salon line. Yep, that’s just the way it works. I can’t believe she actually refused and was taken back to her room! Never mind yes I can believe that happened.

I agree with the others. I’m glad you found the ice cream shop. Downtime is so important. I am sure I am not the only one. Don’t do as we did. Do as we say. LoL
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Hey Barb!
Think your doctor would write me a note?


To whom it may concern -

Sparkles *needs* a daily glass(or two) of bourbon to survive her current ordeal!
LOL.
Thank you for such a good laugh. Whatever it takes to survive is my new motto.
Sparkles ✨
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Me, trying to find equilibrium in all this mess. I won't be going to the hospital today until afternoon.

I have no idea when/if Pathology will be forthcoming with their info. I asked of the nursing staff, and the attending hospitalist ... to please call me, if that info becomes available, that I would like to be on site with my father .. to get that info, if at all possible but can't stay there, . .and be present all the time. This morning being one of those times.

I can only hope they do as I requested.

Who knows if they will.

I told my dad yesterday when I was leaving, I wouldn't be back until this afternoon . that I had some things to attend to this morning, and I do .. and at lunch .. g'daughter's school is hosting a Mother's Day Luncheon for moms and g'ma's . .and she wants me to come, so I'm doing that (trying to find the equilibrium to all this).

I told him, "dad I'd come here today hoping to catch up with the docs and get a read on things .. but I won't be able to be here tomorrow morning, it'll be afternoon before I can get back".

Dad: "It is what it is, in the end anyway".

I took that to mean .. whatever "is" as to the situation . it just "is" .. and my being there doesn't change any of it .. that's for sure.

So .. I hate hate hate the thought they may come to impart this info .. and no one there w/him to help sort it all through.

All I can do is try . and when I ask of staff that they make sure that I'm present .. if they don't do it, it's out of my hands.

Equilibrium. One can I guess, throw themselves at the mercy of all this sordid mess and give up any ability at all .. to see to the things that matter in their own life .. or one can .. not do that. I'm choosing the latter.

Right/wrong? I don't know.

Stepsister .. she likely would step up .. in my stead .. except she is moving her mom today. Today is discharge from Rehab for her, but it was fought that she needs more time in rehab .. and she does .. and so . she is going to a different setting for more rehab .. a setting that is essentially across the street in another site affiliated with the one she's in .. it's just a step down in care need . .. where she will be sent .. and she'll still receive intensive rehab . just her medical needs aren't as pressing as is the case where she is presently rehabbing. So, stepsister will be on that front, to get her mom moved, and can't be at my dad's hospital.

Brother and BB . who cares .. they only make a showing . .they drive the 1 1/2 hours up this way when it's convenient for them . .stay about an hour or so, and are gone.

I didn't even ask him to see what he can do to be here . .done fighting that battle.

DD asked of him that they find a way to put their heads together and give me a day off, .. and there was never any motion to do so. I can only surmise they are disinterested.

So be it.
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