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:
That's more "here" and "present" than was my experience being there visiting.
I know that I made the absolute 1000% correct decision in going the path of hospice.
I know that these last several months, .. all of it stemming from that phone call from stepmom, . complaining he won't "help her" to help him get up .. him sitting in the chair, feces everywhere, dipping his hands in it, trying to eat it ... or whatever that was about .. this back in April I guess, .. I don't remember.
From there forward .. his dx of UTI and Sepsis .. and it's been downhill ever since. Round trips in and out of hospitals and rehabs .. and back and forth . on the carousel .. and dx of pneumonia more than once, .. and Cdiff .. and just on and on it has gone.
Him complaining a lot more in recent weeks (but of course, he was on IV antibiotics yet again, for another bout of pneumonia) .. them coming to get him for PT .. and him arguing . not wanting to participate.
Unable to. Too weak.
I'm the one that made the call the other day. Him now in the ER .. and of course, Hospice now brought into the fold .. and xfer imminent . and a Hospice worker asking of me .. do I wish to continue the IV antibiotic they have him on there, that it's optional.
And explanation . Hospice, .. about EOL and comfort care, not curative care. Me asking, .. "infection though?? what if it goes to raging infection .. when it's otherwise so preventable". Answer, .. that's why there are medications to keep him comfortable. I agreed, .. pull the antibiotic.
Fortunately .. stepmom isn't with it enough to have picked up on that little nuance. Lord knows she was angry as a bee in a bonnet about the fact there is a POA in existence .. and naming me as designate for same .. and even had to be escorted/exited outta there, by her daughter, as she bedside of dad .. gasping for air, choking ... and giving him a 3rd degree, expectation he will answer for his actions to have done a POA ... she'd already pushed back and caused quite the pushback .. on Hospice, as path forward.
Yesterday afternoon was all about final preparations for after his demise.
I could have sworn he'd told me that he
A) wants to be creamated
B) that it is already paid for, and said documents are in "that file cabinet"
C) that his ashes are to be interned to the same cemetery where his wife's parents are buried .. and those arrangements also .. already in place, and in "that file cabinet".
"That file cabinet" ... a file cabinet that sits in his office, .. that I have no more access to than the US Treasury. To get past his wife to even so much as touch the thing . would be a crime punishable by all sorts of hysteria .. at the very least.
How much more difficult these thing are when there is a spouse standing in opposition and argument to forward progress. So so much more difficult.
Approaching the hour we'll need those documents .. and knowing full well I have zero ability to access any of it. I called upon stepsister .. who .. even she meets resistance in her mom who is so very mistrusting . and even of her own daughter .. but her daughter stand a far greater chance of accessing "that file cabinet" than I ever would. Explaining to her, that my memory serves the above conversation . would you look around and see what documentation you can find .. Hospice is asking what funeral home to contact upon his demise, to remove the body.
Stepsister .. answering that she has been in "that file cabinet" numerous times . and she has . thru all this as I've needed this or
As I've needed this or that w/regard to insurance or finances .. her the only one that stand a prayer of going into that house to look at anything .. certainly not me.
Her explaining she's been in that cabinet numerous times and hasn't seen anything of any cremation plan but will look again.
Her ultimately answering that she didn't find anything at all.
So now it became a detective show ...
I know where her mom's parents are buried . let's call them . perhaps they have on record .. the cremation plan and paperwork as to what is to be done, etc etc.
Only I don't have time and certainly don't want to sit in my dad's room . where it's presumed those nearing death can still hear . and discuss all this.
SIL who I've helped so much thru the years .. "Hey I can do that, I'll just pretend to be you .. want me to help with that?". SIL all the way in IL .. and not a vested interest one in any of this. Took on that task thankfully.
Gave her the pertinent info, dad's name, DOB . last 4 of SSN .. his home addy . etc .. see what you can find out.
She called . pretending to be me .. (they wouldn't know me if the stepped on me). Ultimately the story found there ... there is a burial plot there, . yes, .. assigned to stepmom by her parents graves .. and the instructions are that she is to be buried there, in a coffin .. (who knows if that's what she'll ultimately choose for her own remains . if she's even capable anymore of choosing) . and that my dad is to be cremated . she will have her ashes in her coffin.
That .. is the plan.
No substantiation found anywhere that any of this is prepaid ..
Where is his wife/stepmom .. why can't we just ask her, .. "hey obviously the guy is not going to live much longer, . what is it you guys had in mind, where are the documents .. "
She is too far gone mentally to be able to put those pieces together.
Asking of Stepsister .. "well .. all I know to do .. I can go to the same place that handled MIL's cremation . and get that in order .. I have to do it now though .. once dad dies . the signed checks I have from him .. the POA .. it's all null and void once he's gone .. so I need to do it now ... all I know to do is go do that .. and pay for it, but I hate to do that if somewhere there already exists a prepaid cremation .. "
Stepsister agreed .. just go pay for it .. I can't find it and she isn't mentally together enough to know what/where/how.
So left the Hospice unit and set out to get that done .. taken care of now.
Yes, I have POA and I could've gone to the bank . where his joint checking is, with POA in hand .. but time is of the essence.
1. With Covid you no longer can just waltz into a bank's lobby and expect to be seen. You have to make an appt
2. Whatever their procedures are, . it's likely that the POA docs would have to be sent to a higher corporate level before allowing me access to what is their joint checking.
3. The risk ... it's a joint checking acct, he and his wife. What if they come back .. "we need POA for the other account owner too . can't allow her access to the joint checking without POA on both acct owners".
I don't have time for all that horse manure.
The POA was just done this past Thursday the day before he wa xfer'd to the NH . and only then because it's now going to be self pay for the NH . and funds will need to be jockeyed around to pay for same . and it just so happened that the rehab center .. now allowing visits ... with limits (all done thru glass separation) ... for same.
So not like I've had this POA for months now and why did I sit on my arse and not go get this done. It's only a few days old, this POA.
So, in the end, I went to the funeral home we dealt with for MIL's cremation mere weeks ago .. and got it set up for dad's .. and any hour now that will come.
Other musings ... I can't even begin to fathom what will become of stepmom.
This is a woman . old school to the hilt ... my dad was her world, her focus, her anchor in a now adrift mind.
She still lives in their marital home . and it really surprises me that she hasn't gotten out and gotten lost .. or burned the house down .. leaving a pot on the stove .. or fallen and been unable to get up and no one to help her ..
She has certainly fouled up some things financially . that my dad had me go undo . and fix . in the last several weeks.
I can't even begin to fathom the sadness that her life is about to roll into. This isn't a woman who was on the tennis team at the country club or the bridge club ... or ladies tea circle, . none of that. My dad was her whole world always .. a.l.w.a.y.s. ALWAYS. Even before their health began to fail and certainly in these last few years with all his ailments.
She has nothing . in the way of other relationships to tie her to anything or anyone. Nothing. Her two sisters .. one lives fairly close but sounds like that sister is pretty self absorbed . a busy busy sister .. and always out and about with her many social events and her own grown kids, g'kids . and doesn't spend much time with stepmom .. and the other sister lives a little farther away .. but . .. doesn't come around much.
She has her daughter .. who lives between her and her other home over in the panhandle of the state ... and her daughter with her own mental frailties can only take her mom in small doses. They are very much like oil and water and can find themselves sideways in a boat with one another routinely.
Pondering some that .. as to what is to become of stepmom . in conversation with DH this morning. DH stating, . "the thing to do is to not lose touch with her .. stay a part of her life .. call and check on her".
To my response: "Ya know ... I don't know . navigating all that .. let me tell you . she is going to be the one on the other end of need .. health wise and sooner rather than later, . but she has always been so very confoundingly private .. even taking exception with me when present at dad's medical visit that I would have the audacity to speak up and ask questions of doctors/HC professionals .. you don't do that . they are like GODS . you don't ask questions . you don't bother them, they're too busy. That's why they went to school for a hundred years .. they're the ones that know what to do.
She truly did find it appalling and offensive that I would
A) be a part of any of those settings ... upset with my dad routinely for asking me to come and be a presence.
B) have the unmitigated gall to speak up ....
Saying to DH .. "ya know, I have absolutely zero . minus zero interest in engaging in that .. on her behalf ... none . zip .. nadda .. I don't care to fight city hall to advocate on her behalf .. I just don't care enough to stand in that gap .. I truly don't . her own daughter isn't even allowed by her to go to doc visits . and shut the front door .. go to the back . where she is seen by an MD ... h377 would freeze over .. and that's her own daughter. I just don't care enough to stand in that fight .. I just don't.
So ... ???.... I mean what, . stay on touch with her, invite her for special occasions . bdays/holidays . the like .. she can't find her way outside of her own comfort zone of 5 or 6 miles within her radius of her home .. I'd have to go get her and then take her home. I just don't know that I care enough to take that much initiative to be honest. And it's not from any standpoint of .. though it is there ... how much did she "not" include me and my brother thru the years as the proverbial .. red headed step children quote unquote. There is that underlying it all.
So now she nears the end of her days .. and her anchor .. now cut loose . and she adrift ... no longer an anchor to her world .. and no real connections/relationships in anyone or anything .. and her steps .. me and my brother ..
Long long ago learned our place in the pecking order ... somewhere below the dirt under your feet .. long ago came to terms with it.
It's a dichotomy. There are those who would celebrate .. and relish in . . "Well so there you ole bat .. you reaped what you sowed".
I don't. I find it incredibly sad . and I'm sorrow filled for her and her plight oncoming .. and so . yes . lessons to be learned in it . and I think I have lived my life opposite of how she has .. and intend to keep doing so .. and connections/relationships .. they are important.
But lessons that would mandate that I continue to at least reach out to her .. stay connected. I don't know .. I don't know how that would even look, or if I care to take any initiative to do so.
It's all so sad . in my dad's last days/weeks here .. him still able to somewhat communicate . and him expressing his dismay at his wife's loneliness . and his worry of what will become of her . .that her daughter doesn't take as much interest in her mom as he'd like to see .. that she isn't one to go engage socially . him worried about her plight ahead with him (I don't think he was thinking in terms of I'm going to die, . though that is certainly the case ... I think his thinking was more along the lines of .. I will no longer be residing there) ... his worry of her plight to come.
My only answer to him when he'd bring it up .. "Dad you can't focus on that which you can't change". And then I'd change the subject.
It is so sad though.
I'm just here adding a "thumbs up" to your decision to get him into hospice and sending ((virtual hugs)) to you.
This too shall pass.
What a year, eh?
How is the rest of your immediate family doing? Is DH dealing ok with his mom’s passing? Has DD continued with talk therapy and AD meds? Take care of yourself, dear Dorker!
Edited to add: Absolutely, hospice was the right choice!
Not before stepmom onsight with all her crazy hanging out there at Hospice.
Had been insistent she was staying the night. I knew, . .that's not gonna end well, .. night .. out of her element at home .. it won't go well.
And it didn't.
I tried to persuade her she needs to go home and rest, not gonna happen. Tried to get her daughter to argue the point. She did, .. argue the point, her daughter lost. Not gonna happen.
Before I left, I let the nurse desk know what they were likely in for and provided the phone number for stepsister.
I got a call at almost 6 AM yesterday AM that someone will need to come get stepmom and she can no longer be allowed her without attendant, and she cannot spend the night any more. She'd worried the staff all night long with her delusions. Bugging them every 20/30 mins that they have got to, got to do it right now, call my DH .. that he has called about the burial plot.
Delusional.
There is no burial plot, dad is being cremated. My DH hasn't called anyone about any of this ... much less her. And the staff there at Hospice, don't know my DH from the housecat. Call "DH", Call DH" .... on and on it went, all night.
That and .. stepmom at their desk at one point frantic .. that the patient in bed wasn't dad but her daughter .. and she's not talking back to her .. she won't speak.
It's a wonder (and it would've probably been best for all involved) she didn't get a psych hold there in the same hospital. Probably should've.
I knew she was off .. way off .. when I had to just leave earlier in the day before she spent the night. Her crazy hanging out for all to see ... her telling me that dad had talked to her just an hour before I got there (he was no longer responding, to anyone/anything) .. "yea wow . that's good", her asking me, .. has he talked to me, "No .. he hasn't talked to me". Her: "I don't understand that, he talked to me just an hour ago ... I just knew he'd perk up when you got here".
That and many more examples of it all.
But she was intent to spend the night. I was intent to leave .. and dismiss myself from the crazy (I have zero patience with it, . I can help with a lot of things but have learned I have zero patience with Dementia). I had to just leave .... exiting I stopped at nurse desk to tip them off as to what's to come with stepmom there setting up camp.
Sure enough, .. almost 6 AM .. staff calling that someone needs to come get her ... she can't be here . and she can no longer come here unattended and cannot spend the night. I told them (again) to call her daughter.
Then asked for a read on dad and any changes. Was told that it was really surprising he made it through the night. No longer any BP .. feet mottling badly. Didn't expect he'd make it through the day.
I was doing a couple of things to get ready to go there, one last visit .. and got a call that he wasn't expected to live another 15/20 mins . actively dying.
I couldn't of gotten there in that time frame, so abandoned any plan to go there. Got the call, like clockwork . in 15 mins . that he was gone.
I'm at peace with it .. he suffered so .. and was so wracked with ill health in the more recent times. He's at peace now.
And as for me and .. stepmom.
I will get my feet under me .. and navigate my way through to not completely abandon her, . but walk a walk of .. someone staying in touch while not stepping, at all, into any role of c'giver .. to her dementia .. or otherwise .. just a friendly phone call perhaps here and there, . or a plate of leftovers .. if we per se . have a bque here, .. simple ... non committal type things.
All I know of her . and the news that her husband of 50 plus years is gone .. is that she did leave the hospital that AM when asked to do so .. (drove herself .. yes ... accident waiting to happen). Later that AM when her daughter called her .. she was so disoriented she didn't
she didn't remember having been at the hospital. Don't know where she thought she was the prior 24/36 hours .. who can say.
I guess her daughter informed her that her husband is gone.
Her daughter says it will take her a couple of days to reorient and some rest.
I haven't called her, . .don't really know.
So very sorry for your loss. Take care, many hugs for you!
Dorker, your Father has peace now after his long battle. He fought right till the very end didn't he?
I am so glad you feel at peace. (((Hugs))) from the other side of the world to you today.
If not, well, it's not your problem.
I realize you've tried to be a good, caring daughter-in-law; but, there comes a time when you have to think of yourself & your own physical/emotional well being.
I didn't & I'm sorry I didn't. If I'd not allowed my sense of duty to rob me of a life for myself, I'd not have come to resent what I allowed to dictate what I could & couldn't do.
You don't mention if you're still married to her son& if he is still living. That's an important factor to take into consideration.
Since you don't mention him, I can only presume he is out-of-the-picture.
I highly suggest you resign from the position you've allowed yourself to take up.
If there are issues you haven't brought up, then my advice is only as good as the information I used to base it.
It's been a long, long haul for you. Time to rest and heal.
There's really nothing to do now, but deal with the aftereffects of 2 deaths close together.
You made your peace with dad, a small miracle. You were there for him. You have that to remember and you did all you could.
Step MIL is NOT your problem. Let her daughter do the work. She's not close to you and wouldn't probably want you to step in.
StepMIL is going to need people around her, and probably needs to be placed in a ASL of some kind, but that's not your look out.
Be gentle for your own sense of well being. You've been tough and caring for a long time.
I'm not sorry your dad is gone. He is truly in a better place.
((Hugs))
I am so sorry you have lost your dad. I’m happy for him that he has slipped free of the pain and confusion and worry his last days (months)seemed to have been. I try to imagine SM and her existence. I can’t. Life marches on. Ready or not.
‘You’ve been a great daughter. He was lucky to have you. Wishing you restful nights and good memories.
Stay strong and do not allow yourself to get sucked into the inevitable DRAMA that is currently erupting with stepmom. I feel for her as she is clearly unhinged. She probably won't last long without her husband, especially since he was the center of her universe.
This time last week, I was trying with no success at all, to reach my dad in the NH he'd been previously placed in the day prior. Calls to his room ... unanswered. Calls to the nurse desk, .. told "all are busy with other patients, I'll have the nurse call you back".
No phone call, no ability to get an answer by calling his room, until later in the day when I did get a phone call from the nurse who discovered the phone in his room, not working .. and had ordered a new one to be placed in his room and her report, he is struggling to breathe, have upped his oxygen .. but other than that is doing okay.
That was this time last week, after having him xfer'd the day prior to that setting, and the day prior to that the hullabaloo of completing a long awaited (now useless) POA .. and the complications thereof .. all done via a glass partition and his ability to understand/comprehend, even hear the goings on ... all dicey to say the least.
The days prior to that, ... helping in the role of trying to dial in on a suitable spot for NH. All while, Covid restricts one's ability to visit, get a feel for, see/smell, walk around, talk to staff, etc.
Then on Sunday .. a 1:30 AM phone call that he is being taken to the ER .. respiratory distress. Clothes on . off I go to the ER . and all culminating to .. less than week later, he is at peace, .. and gone.
Weird space ... to get one's footing under them .. in the realization those phone calls of need/urgency as to issues, they're over.
One lives on "alert" in some measure for so long .. that it's hard to change gears and realize that high alert status . you can put it away .. it's over.
Over reaching visual that plays out .. how frail/how very frail and awful he looked at the end, . how sick he was .. his gasping for air (before the morphine/ativan kicked in and took him to another realm entirely) and then the visual of his mouth gaped open . and not at all with us in this realm in any longer, the dying process.
Talking to DH about it who has much the same visual as his mom less than a month ago, took her last breaths on this earth. DH says that he makes a conscious effort .. to think back on good memories, their days camping as kids, her as scout leader for his scout troop as a young boy .. the many summer vacations taken as a family and her young and vigorous.
I guess in time mine will improve and that visual will wane .. and maybe some happier times will replace that visual. I try to at this point, remember some of them . but they escape me . not all sure there are very many . being this was a dad who was mostly absent my life ..
Weird place to be.
Glad .. grateful he is no longer struggling .. but .. left with kind of a need to get my legs under me in the new path forward, with no elderly in the midst . in need and urgency to call upon me. Will be new. It's been a long long time since my life hasn't included the need to check on an elderly.
You put it so succinctly. What was your 'norm' 4 months ago is now entirely a different 'norm'.
Even though your families were stressful to deal with (to say the least) you kept your dignity and love of them on the forefront and I applaud you for that.
Time now for you and DH to grieve, separately and together for what was, what was and to look forward to what is to come.
I am a 'woman of faith' and believe that death is simply the soul leaving the body and walking (often VERY gratefully) through that door we call mortality into an existence free from stress and pain. Leaving LO's behind who may mourn, but know that the next life is promised to be so much more wonderful than anything we can imagine.
Funny, isn't it, that all the things you had to fuss over are suddenly gone. A few odds and ends in dad's case, since he has a surviving spouse, but in MIL's case, it's a book closed and done with.
Makes us think, doesn't it? How much of what we fuss over is truly worth the fussing. (Yet, I still fuss, and always will!)
Prayers for you, as you go forward finding joy in your life with no aging parents and their needs. You deserve a break--I hope you take it.
We thought it would be a couple of months... it was closer to a year before we started to really feel like we could see our “real selves” again after so many years of constant emergencies and caregiving. Even now, at about 1.5 years, there are still some lingering responses/exhaustion.
I hope for you that it comes back quicker:)
As far as happy memories, I did not have a good childhood either. I take the few good things, hold onto them as gifts, and have had to let the rest go. That doesn’t work for everyone, but I find the less I give to situations that I have zero control over, the more quality my life has in the here and now.
My hope for you is that you get time to read a book, watch a sunset, laugh with DH about anything at all:)
And all the settling of your father's estate will be someone ELSE'S worry and headache, since there is no will. At some point down the road, the money in those CDs or account or whatever they will will go to you and your brother. Or not. You said you never cared about any of that, anyway.
How is your brother doing? Did he keep in contact with your father during the final weeks?
I'd stay out of your stepmother's life. It was what she clearly wanted.
I can now tackle that, .. as well as .. have been needing for a long long time to clean out my closet and drawers of clothing that I no longer wear, .. to the point I have stuff stacked up ... stuff I wear more frequently because my drawers and closet is full of stuff I no longer wear. Time for it to go, weed thru it, donate it, get it gone, get some order organization.
Been surprising how tired/exhausted I feel. At lose ends. Really has surprised me. I think to myself, .. "oh this is grand now, I can go get my g'kids I haven't spent much time with these last few weeks and spend some time with them". But, I don't have the energy. Not right now.
It's weird to me. It's like I just want to cloister away and not be called upon/needed, by A.N.Y.O.N.E., not even my precious beautiful g'kids. Not right now.
Does that even make sense? I mean, I wasn't doing any heavy lifting in all this and like bathing and toileting an elderly. The most I was doing was advocacy .. and making phone calls, .. and wearing that hat. That's it.
But I guess the exhaustion maybe comes from living life on alert to varying degrees, .. and for a long time.
As to my brother ... I guess in the last several weeks he'd been in touch with my dad, I don't really know, I wasn't in touch with my brother .. on purpose on my part.
At the end, . it was said to me in the wee hours of the AM as the ER doc suggested handed me a phone # for the Hospice doc, asking me to call . and I did so .. the Hospice doc wanting to come in and meet with me and anyone else that may want some input in that decision .. that I make said folks available. I did call my brother and he drove the 90 mins here, to be present for same .. as did stepsister and going to retrieve her mom . to also bring her mom to the scene (a necessary messy nuance to it all, her presence).
Hospice doc did arrive and met with all in the waiting area, .. all meaning stepsis .. my DH and myself there, .. brother and stepmom. Of course, the points touched on that one would imagine . and stepmom pushing back .. her on the page that he just needs to get well.
For the most part, I pushed on past any narrative she might try to steer in it all, .. she's not in her right mind.
Then it was bedside with my dad/hospice doc .. and my brother . and myself and stepmom (roll of eyes . she has to be part of it, she's his wife .. but she has about the mental capacity on all this of one of my 3 yo gkids).... that scene .. a taxing one . her pushing back . and really .. I guess the doc had reviewed the paperwork, could see I was HC surrogate and DPOA .. and so .. wife's input into the dialogue there, pretty much talked over.
I do feel for her, .. I can't imagine how motifying it would be to be on a page with such an important topic and be steam rolled by those around you, which is probably about how it felt to her.
But the bottom line, . as presented by the hospice doc .. he can stay on this carousel if he opts to . if we want .. one of back and forth to the ER .. and outside of that bedridden and on oxygen in the NH .. his ambulation isn't improving . as seen thru his stint in rehab .. and is worsening . as his respiratory situation . he can stay on that carousel if he'd like . there really are no more interventions/measures that are going to improve his life. Or he can (we can) take control and make the goal .. EOL that is peaceful and guide that path ..
Opted for the latter,
despite protests from stepmom and her bedside audibles that he just needs to get stronger and come home.
DID YOU NOT COMPREHEND WHAT WAS JUST CLEARLY ARTICULATED?
I wanted to scream at her. But of course, .. she didn't .. her brain is broken.
Wouldn't surprise me, if at some point in the future, .. dad's death gets put on me as the blame for such. So be it, .. I know better.
Brother deferred to my judgement in that setting, . along w/the doc. Did ask later ... in conversation w/me . was that the right route to go .. that he'd been dismayed the ER doc seemed so ready to jump in the direction of Hospice .. when . that ER doc doesn't know our dad, hasn't been on dad's case to know the inner workings.
I simply explained to my brother . my knowledge of the inner workings of the whole thing and why an ER doc would come to the conclusion he did to then bring a Hospice consult into the fold, and that sufficed.
One thing that really .. maybe I was tired ... had been up and at the hospital since 2 AM. One thing that absolutely infuriated me. The Hospice CM has to present .. they have to by law ... the inner workings of a Hospice facility as setting. In that explanation if one stabilizes to the point that meds that can be administered elsewhere for pain management ... if that is a factor in his case, . if he is able to eat/drink .. and so forth . then he no longer qualifies via Medicare for a Hospice setting and that a SW will be along to ask where is he going, can't stay here.
That point driven home .. very clearly, repeatedly .. by CM .. all the while out of the other side of their mouth making it known that it's not believed that will be the case with him . but that they do have to by law, make sure it is agreed to and understood .. he could be forced out of that setting . it could happen.
Of course stepmom present for this dialogue (of course she is, she's his wife) .. she only seemed to hang onto the "stabilize" piece of it all .. and so she'd then insert, repeatedly .. "then he can come home right? .. I can bring him home .. we'll manage at home ... I'll bring him to the house, he doesn't want to be in any of these places he wants to be at home".
What I know from many conversations with dad that she doesn't have a prayer of absorbing . is that home . yes in a perfect world . would've been his preference .. but .. in his world . home not at all optimal. Home . to him . would've meant he was at the mercy of her broken brain . yes hired help could be brought to bear . the resources there for same . but she'd soon dismiss any hired help . .completely capable (just ask her) of his care ... and why throw good money after bad would be her mantra. ONLY she is not capable . but she's the last to know that.
This exchange went on more than once . her no formal dx anywhere of Dementia and so .. I guess presumed to be of sound mind . and .. so she'd keep pushing that he can come home .. and CW's, SW's having this conversation . looking for guidance that someone in all this understands/comprehends and has a plan.
That would be me. HC surrogate and DPOA ..
To the point that I was . for the most part steam rolling any input she provided .. along with her daughter trying to reason with her ... in that setting .. and me asserting that he will go back to the NH (as the plan) should he stabilize .. and stepmom now angry ... and asking of the CW rather emphatic like, .. "I'm his wife? I don't get any sayso in this?".
Being told that his daughter is his DPOA and HC Surrogate .. and that angering her. She didn't know that she stated rather angrily . all this outside dad's hospital bed and with CW and SW for Hospice.
Have no idea if dad told her he intended to do that and she forgot .. or if he avoided conflict (his modus operandi with her always . seemingly) and just failed to tell her. But that point angered her, and she let it be known ... culminating in her daughter then