Dismissiveness - the scars of living amonst the Ns

[Gaining Strength]

PR - he had an MRI on Thursday but that was to assess the damage of a stroke that happened a few weeks ago and it was two days before his last stroke.  In truth we do not know when on Thursday or the early hours of Friday that this last stroke Occurred.  In fact I know nothing other than that he is not the same person than before hand.  He can no longer sit up.  He seems to have lost his ability to use either of his hands.  I am not sure he knows where he is though I suspect he does.  He knows who the people around him are and his memory is clearly in tack.  But Thursday he was sitting up and trying to walk and was very cognizant.  Today it appears that he will never leave the bed again.  I don't know how to label that stroke but it is definitely life changing.

When I went to visit this morning, a nurse told me that "they" wanted to transfer him to the neurological  floor but that a family member said, "no."  I asked who had said no and she had me speak with a different nurse.  The different nurse said his wife.  I knew that if that were the case that it was simply because his 81 year old wife who began treatment for a pinched nerve this week and who just began treatment for a bacterial infection and is just now beginning to recuperate from 4 months of living with bi-polar mania and severe medical issues in her husband  that she may not be thinking clearly right now - so I called her.  But no phones are available on the 7th floor so I have to leave and go to a locker where my purse is and call.  She is all for the move.  So I lock my possessions back up and go back to the 7th and get passed in and relay this to the nurse who says she must hear it 1st hand.  So she calls my father's wife.  Then, within 5 minutes, the nurse comes to tell me that the Dr. is on the phone for me.  The Dr. tells me that the neurologist and he consulted yesterday and decided that there was no need to send him to neurology but that they would be sending him to palliative care.  I asked him when and he said he did not know, it might be today or tomorrow or Tuesday.  I mentioned to him that the nurse had just gotten off  the phone with my father's wife getting her permission to transfer him to neurology and the Dr. said that there were some cracks in their system of communication.  NO!!!

This afternoon I tried to find out what was being done about nutrition for my father who has been rendered incapable of swallowing even at times his own saliva.  He has not eaten in over 48 hours.  The nurses tell me that the doctors have not ordered anything but that they don't come in on Sunday and so what ever they do they will not do until sometime tomorrow but that the doctor is not likely to order any IV until after he is transferred to palliative care.  By then it will have been 66 or more hours.  But I wouldn't want anyone to have to think or make a decision or call in orders while they are on call at home on a Sunday.

[Gaining Strength]

I'm understanding what I am doing in this period.  I am deciphering some of the differences about how I react to each of my parents.
My father has instilled in my great anxiety - my entire life.  Once he is out of my area the anxiety changes - not that it goes away because it resides in a voice whcih I have internalized and yet it is not ON.

But my mother is the one who thrives on N supply and I have just understood that today for the first time and when she does that she engenders a rage in me.  She does that in her pitifulness and in her victimhood and in her passive/aggressiveness and I suspect in other ways as well.  I have been asking myself why she stokes anger and a seething rage within me and after months and months, maybe even years, I got an anwer today.

[Gaining Strength]

CB - thank you.  That is so helpful, just the encouragement I needed.  Trying to shift out of the powerless N child into assertive but not aggressive person.  You cannot imagine how helpful your post is.  Where he is is a 10am to 8pm visiting hours.  They supposedly plan on a neurological workup and transfer before 10.  I am going at 8am visiting hours or no.  I will practise being assertive without slipping over into impotent anger.  It will be a good experiment for me even if I happen to fall into old patterns on this attempt.

[Gaining Strength]

With all my present "figuring out" here is something I still don't get. 

Today as Sunday ( I know - you already knew that) and as usual, my child and I went to my mother's for dinner and a couple of TV shows.  She actually bought groceries ( a little unusual) but I am far to worn out to cook.  So when I walked in a little before 5 fI told her we would be ordering out tonight.  She offered to pay (as I expected she would do.)  I wanted to use the computer first.  I wanted to post some things here.  I was watching 60 minutes at 6pm and she stood up and said she was going to cook the steak she bought for my child.  I asked her why she had a problem with my ordering out.  She said she was hungry and needed to eat.  I told her to go ahead but that I would be ordering out for my child. 

Funny thing is - she does not eat steak and she does not ( I should say CAN not cook steak).  So she starts to sit down and I told her to go on and cook her dinner but that I would be ordering out for my son. 

She goes to the kitchen and comes back with a tray and announces that she has prepared "hors d'ouvres".  On the tray is a bowl of cashews that she opened on Christmas Day and some ritz waffle crackers with cheese centers.  She did not fix or eat the dinner that she was so hungry for that she could not wait until 6:30 for me to order take out.

What is that??????
Is it Nism?  If so, HOW?
If not, WHAT?

She was not hungry and as far I know she did not eat dinner.
I hate her - not her behavior but her but I still want to understand this.  I want to get past my raging at her and understanding is the way out for me.

(No questions please but if you have an idea that would be of interest. - thanks)

[Gaining Strength]

I am fascinated and thankful to learn that my father knew - was conscious of and intentional about - that he was being abusive.  Actually that never entered my thoughts.  It tells me so much and I suspect I will be processing that for some time to come.

[sKePTiKal]

My dear, dear friend...

I had decided I wasn't going to post today; letting some things sit & settle - but I'm making an exception for you.

This is very, very important now - and the hospital folk will be asking you or someone for this soon, unless they already have your dad's info on file - they are going to need a copy of any advance health directive he might have created and/or a health power of attorney, which designates a specific person to make decisions about his care.

I'm afraid I'm all too familiar with what you're going through; with the mystifying, exasperating behavior of the hospital staff that you're encountering. Palliative Care can be translated thusly: they will make him as comfortable as they can with pain medication, they may or may not feed him through an IV (based on the health directive), and if he is having trouble swallowing that will probably mean that they'll intubate him, to keep his airway open - to insure that he is breathing. If they do NOT have a health directive on file, they will start a nutrition IV as soon as he is moved while next steps are being decided on.

I see now, why his wife isn't there and you're on "duty" instead. Poor thing, does she have anyone to help her? Would she know if he has a health directive, etc? His lawyer or a trustee, perhaps? Have you gotten in touch with your brother? These are things you could "do" that would have a clear practical purpose and perhaps help clear the logjam or stone wall of silence that you're dealing with, with the medical folk. It won't clear up the cracks in the system... or the absolute insanity of some of the things you're experiencing with them. They will take another scan to assess the second stroke - if they haven't already. The question to ask now - about that stroke, after the results have been interpreted by the neuro docs - is how extensive was it? What area of the brain was affected? My wild uneducated guess is, that if they've decided to move him to Palliative Care instead of the Neuro unit - the stroke was pretty significant and even they are in a "wait & see" mode... looking for signs from your dad that will be indications of his level of functioning, now.

You will have to keep asking about the scan of the second stroke and to talk to a doctor. From the nurses, you might be able to gather some info about his vital signs... what they're giving him for pain, if they're feeding him IV... etc. But, they won't be able to speculate on what happened, what his chances for recovery are... they'll get in trouble with the docs, if they do.

Please understand that the next week or so is going to be terribly difficult and make extra efforts to care for yourself and son. Get plenty of rest, eat something regularly - even if it's only a cup of yogurt or a pack of crackers. It's OK to put your inner work "on hold" for the time being, if that feels right... to care for yourself & son; to take care of your normal business (bills & such); and to come here and process events; to vent or whatever expression seems right. I'll keep checking back to see how you're doing.

The only insight I can offer on your mom's behavior - is that she's facing a brand-new situation and one that she feels totally powerless in. You're obviously stronger than she believed you were, and a force to be reckoned with - you're in motion, clear about yourself and what needs to be done... and you're not asking anyone's permission - approval - or forgiveness either. GS is IN CHARGE... and doing pretty well in that position, too, from the sounds of it. You've probably scared your mom senseless, by being your real self, you know?

I really do wish we had an applause emoticon... you'd get a standing ovation from me.

That said, you're still going through an incredibly difficult time. I'll do my version of praying for you and make sure I'm checking back here for the "latest"; to be here for you.

[seastorm]

Gaining Strength,

You are showing such courage under fire. This is such a hard, hard time and so multi-levelled. Medical, Neurological, Mental Health,Palliative  and all interfacing and creating more problems. You have strived to understand and be there for both your mom and dad inspite of their inability to show love and gratitude. I am amazed you are still standing under the weight of responsibility while dealing with the confusion on the care providers.

On top of all this, feelings and realizations are surfacing. Thank goodness you are sharing them. Hearing that your father KNEW he was controlling and abusive is mindboggling. He knew and he did not care as long as he got his own way....Yikes.
Through all the chaos that you are bound up in I hear the voice of a someone who is caring, intelligent and has so much drive to do the right and caring thing. What a good soul you are.Somehow this is miraculous because it was not modelled to you growing up. It springs from the pain maybe.

Thank you for sharing your story, feelings and thoughts. There is so much in them. Such humanity.

Blessings to you Gaining Strength



Sea storm

[Hopalong]

You're behaving with honor and with the right intention, GS... Just being there and caring, even when you can't control it all, is what you'll keep. The helplessness and fury and all that too, but your witnessing and caring, that's the true vigil.

I can't imagine how much is being stirred to flames by all the "leaks" from your Dad's diminished boundaries...his pure id is really out there now, isn't it?

You don't have to prove anything. To anybody.

But you are showing who you are.

Be good to yourself, and to M too -- this must be so scary for him.

Love and steadiness, breaaaaaaaaaaaaaathe,
Hops

[Gaining Strength]

PR - health directive - check - no feeding tubes, no recuss, but there is room for IV.  He is conscious but only makes sense during the daylight hours.  Very confused at night.

Today I had an appointment with an eldercare attorney that I made sometime ago to get advice on how to deal with my mother's out of control spending on nobody knows what.  In preparation, I left the hospital and went by my mother's to get some information.  I asked her about her home insurance - she has none.  I got angry and she got angry back and said, "It's my house.  I can do what I want to with it."  "Where do you think you will go if it burns down??????" 

I know her angry response is typical for her when she gets caught with her pants down.  She was caught being utterly irresponsible and she goes on the attack.  Last night when I was tired and wanted to "be served" dinner by ordering out - it made her angry.  She very clearly did NOT want me to have what I wanted but she turns the whole damn thing around and acts like she was doing something for me.  Today I recognized that she does that when I am down scraping the bottom of the barrel.  She moves over the the aggressive side of the passive/aggressive scale.

Thanks for your kind words Sea.  One of the mysteries to me is that my father does not evoke anger from me but my mother does.  I have not yet solved that mystery. But I think the events that are taking place now are helping to unravel some of those threads.  I really want to understand this.

I am breeeeeeeathing Hops.  Thanks for that reminder.

[sKePTiKal]

Your mom sounds like a real trip, GS.... I wonder - and this is just off the top of my head and probably not even close - but I wonder if your anger is 'coz she didn't defend you - protect you against the worst of dad's rage/anger? I don't know... sometimes it feels like those situations are just so complicated, twisted and always, always a litany of he said, she said... that it literally makes my head hurt to try to unravel it.

I can almost picture it tho... mom goes poking at the dad - blame-poke here, complain-poke there, martyr-victim poke again... and then she collapses into total victim-helplessness when dad finally has had enough & blows up. And all little GS wanted was someone to notice she was there - and care enough to act like adult parents. They are totally embarrassing when even a little kid knows they "don't have to act this way"... you know? When the parents are immersed and obsessed with their own power-war with each other... the kids end up being used - one way or another. I know I sometimes felt like my mom's pawn in her elaborate "game"... and I can almost make a case that I was used as a human shield; almost... it still seems like a stretch, because I started trying to make myself heard, at one point - before my mom started gaslighting.

The eldercare attorney sounds interesting - and like a positive step. I hope that went well. It seems your mom is more of a "problem" ... and I think it's a wise step for you to have this kind of help right now. I didn't know there was such a thing.

It's a good sign for eventual recovery, if your dad is conscious and making sense at all at any time of day. This is gonna sound goofy and crazy... but with MIL, I noticed that at night - it seemed as if all the "connecting" systems of her brain sort of expanded and spread out... loosening the connections... you could still find the different functions - like physical reactions to pain or emotional reactions or thoughts & ideas... but they didn't seem to fit together as tightly; they were isolated responses... the cog wheels didn't turn all together, synchronously.

Once she was awake - the brain-machine hummed right along just like normal. Over time, and especially her last few weeks with us, I did notice that it took way more time for her... to re-assemble those cogs... get them turning again.

After her first stroke, it took about a week for her to "put herself back together" enough to really start communicating again. I knew she was back - when she asked for her purse and tried to put lipstick on!

I really believe you WILL unravel the mysteries of the relationships you have with your parents, GS. It's all going to become crystal clear in some still moment, very soon... I really like the sound of refined, ringing steel I'm hearing from you... even though I know you have to be exhausted and on the very edge of losing your patience. How far is the hospital for you?

[Gaining Strength]

So much is being sucked into the vortex.
It seems to be a vortex with opportunity to sort some of this lifelong stuff out.
Stuff sucked into the vortex from my father, my mother and bits and pieces from each of my brothers and one of my sisters in law.

Oddly, very, very oddly, my father has been calling for me since the wee hours.  When I am here and when I am not.  he is delirioius.

[Gaining Strength]

I am toggling back and forth between figuring a way out of this wounded, altered perspective that renders me less than ideally functional and highlighting and identifying the absurdity and insanity of the behaviors of those individuals who make up my family of origin. 

The younger of my two older brothers arrived in town yesterday in order to see our father.  I called him on Sunday to let him know that our father had had another stroke and that his days may be numbered.  My father's wife's daughter asked me on Monday if my brother was coming to town on Tuesday.  I said I had no idea.  She told me my brother had called her mother to say he was coming.  I dialed his number - no answer.  I dialed his wife's number - no answer.  Then yesterday afternoon I received a text message from my brother, "nurse said he did well with physical therapy.  He's sleeping now."  No mention that he was in town or that he was visiting or hello or anything - just a message as though we were in a back and forth conversation about my father's condition.  It all seems crazy to me.  Non-crazy would be - Thanks for letting me know that our father is not well.  I think I will try to come to town and will let you know about my arrangements. I'll go straight to the hospital.  Will you be there?"  Something like that would have made more sense to me.  But I am beginning to wonder if I have any perspective on "sense" or "crazy".

This whole damn hospital system in so insane.  I am now so frustrated and angry.  I am so tired of dealing with on hand not knowing what the other hand is doing and being caught in the middle of it all.  The social worker just came in.  We met yesterday to discuss options for after my father is released.  So she just walked in and asked if I had made arrangements.  "No.  I'm waiting to hear from the physician about when they are going to dismiss him."  "They are looking at tomorrow or Monday."  "Well I am waiting to hear from the physician."

I have met with physicians each and every day.  As late as yesterday the physicians said they did not know when he would be released and just now the social worker asks if I have made the arrangements for where he will go.  I am so sick of it all.  THEN - his wife wants him to come home.  He makes no sense, refuses medication, and on and on - i.o.w. he cannot go home.  30 minutes ago I got a call from my father's wife's son asking what was this about my father going home to his mother's house.  He was very upset.  It is quite reasonable.  His mother has been worn down by caring for my father and though she wants to do it - it is simply too much.  So I am right in the middle.  I am definitely the one who needs to participate in these decisions.  I am the only blood relative of my father who is involved and I am also crazy about his wife.  She is the only one who has been an advocate for my little child.  For 14 months she has taken his ice skating every single Saturday and has paid for all of his lessons.  That is the sort of thing that many grandparents do but she is the only one who has ever done anything like that for my son.

Here is more crazy.  My father is delirious.  The physician used that term in a medical sense and she defined it for me.  I explained that to my brother yesterday afternoon.  My brother argued with me, telling me that our father seemed just as he always did.  How do you argue with that.  I simply said, "I'm telling you what the doctor said."  This brother will disagree with what I say regardless of whom I am repeating.  Had the orderly told him the same thing in broken english he would have accepted it but from me he will argue it.  Is that crazy?  It feels so crazy.

Damned if I do.  Damned if I don't.

Not only do I not have a mother and a father or one or two brothers who support me, I have four who along with two sisters in law, will undermine and challenge me, throwing up barrier after barrier even if it is an act of cutting off their own nose to spite their face.  It has taken me so long, so very long to fully understand this.

As I was walking down the long corridors to get here this morning I realized that across the years, I have been looking for, waiting for, hoping for opportunities to get my foot into the door for family life.  And events across my life that I thought were those cracks but which resulted in a door slammed in my face yet again never diminished my hope.  Now that is crazy, that is MY craziness - hope in the face of fact to the contrary.

A couple of years ago when after insane hospitalizations of by our parents simultaneously, my oldest brother said to me, "I haven't been very nice to you."  He said that because I was doing everything I could to work with him in dealing with an utterly insane situation with my father's hospitalization and commitment.  He said it because I was supporting him and standing by him as he took the lead in a very difficult and trying time over a period of several months.  I thought that was a crack in the door and that I would find myself sitting inside the family room after that.  Foolish.  When our other brother married during that period of hospitalization of both parents and he married a seemingly decent person, who invited my little boy to visit them in their Florida home that X-mas, again, I foolishly thought that door to the family room had cracked open to allow me in.  Foolish.  and there are so many times.

FINALLY - I get it.  Even if I get into the family room it will simply be more of the same.  I will not be welcomed and cherished at the table.  Even if I get into the room it will not be as anything more than a target of derision. 

Insanity - I can tell even as I write this that I have not completely let go of that hope - even though I am seeing more clearly how that false hope has been working.  that hope, that longing to belong is so damn hard wired, so difficult to excavate and extricate from oneself.  I see how that longing and that absence have played a role in the formation of my personality.  I see how the sense of injustice from early on to "favoritism" toward my brothers and then the kind of "favoritism" that others received from their own parents has taken a silent, unconscious toll on me as a child with unfortunate ramifications as an adult.

I do believe there is some sort of resolution for me now but I am not able to envision it. 

I am so angry and so hurt - so two or four years old - and so lonely, so bitterly alone in it all.

[sKePTiKal]

Not quite alone, GS... I hear you.

And I hear the "I WANT..." that you are saying. I wish I could promise you that "I want" would be fulfilled. But, I don't think I can promise that. (Having my own meltdown over that, myself.)

But here's an idea, for what it's worth... I think - I'm not sure, OK? - I think that the way out of the damned if you do - damned if you don't that you're faced with right now... is to not ask anyone's permission to do what you believe is best for your dad and his wife. Consult her, of course... but be firm, in that you don't want to put her in a position of care, that will undermine her own health and well-being. I think you foresee how difficult that would be for her; and what kinds of disastrous things could take place - accurately. Let her know how much you appreciate her willingness to try - but point out the practical issues. Can she lift him, for instance?

Then, release the outcome (and you know there will be outcome!) of other people's opinions and judgement about your decision, yadda-yada-yada... when they want to lob those kinds of stink-bombs at you... have a simple reply at the ready: you weren't there or you weren't involved... and I had to do this by myself. And stop there. People who aren't there to help don't get to criticize later, and you don't have to justify your choices to them either. Especially when you've already asked, you know? Because you KNOW what you're doing... and you know what you WANT... and it would appear that except for your step-mom... no one's been lined up offering to help.

What you are faced with is difficult enough. Don't take on anything else - for anyone else - that isn't yours. They're big people; they'll deal with it - or not. Protect yourself (that attorney might come in handy) - and don't worry about the ones who can't even let you know what their plans are and refuse to accept the reality of the situation, that you are communicating to them. The doctors will back you up, I think.

Hope there's something useful here for you. If not, why don't you come over and I'll brew a strong cup o' irish tea... yes, it's spiked!!

[Hopalong]

Seeing all this through the prism of your yearning for family affection and approval makes it all make sense, ((((((((((GS))))))))).

I think what will release you, and it is very sad but has a good outcome in the long term, is to release all hope of that.

Release it all the way: My family is not going to be affectionate or approving. I think if you repeat it to yourself until it's drained of anguish and becomes a reality-fact, like "This is February" -- soon the bitterness and anger will follow it. Your being will release them too, because deep in your soul and cells, you want to release them. You are tired of these feelings. The anguish and anger are about attachment and expectation.

Then, not distracted by unrealistic hopes, you could evaluate each choice by asking yourself questions like:

Is this action or piece of information going to change the outcome?
If it is, how much of myself am I choosing to give in order to advocate for it?
What will be my signal to myself to stop that effort? Can I name that privately, and heed it?
What will I do to show myself that I have stopped going too far for my or my son's well-being?
Is there a verse I could hum or a quote I could pull from my pocket to re-read, that would reinforce my commitment to caring for my own and my son's well-being, no matter what is going on?

Is this action or piece of information not going to change the outcome?
If is it not, how can I be present and be at peace even though the outcome is not going to change?
What can I do in this moment that I will feel most peaceful about when I remember now?

Faith and steadiness to you, with love,

Hops

[sKePTiKal]

Release it all the way: My family is not going to be affectionate or approving. I think if you repeat it to yourself until it's drained of anguish and becomes a reality-fact, like "This is February" -- soon the bitterness and anger will follow it.

This is an excellent piece of advice (thx Hops - I needed it too) for many things - but at the moment, it may help by reducing the number of "big things" you're juggling right now.