Stage IV metastatic lung cancer with permanent chest tube, fever 104 and he refuses to listen to anyone! Vent, trigger warning so be careful.

[Tiberia]

Faith,

You are strong; you are courageous; you are compassionate. You are protecting yourself and your family by establishing wise boundaries - this is your first priority. You are modeling healthy and loving boundaries to everyone who is paying attention. Believe me, people are paying attention - your kids, your husband, your friends, all of us. 

 

But you are also reaching out as much as you are allowed with compassion and grace. You can't fix this; it's their decision. I think you're being amazingly gracious. It hurts so much because you care so deeply. I hope you find strength and peace in the midst of this painful journey. 

 

[LMD]

I'm so sorry. That is an awful lot to bear.

[Liz CA]

Thank you all so much. The sad thing is that at one of his psychology appointments, I was asked to go along, and what came forth was heartbreaking. According to the psychologist, dna donor has been hating me for many, many years playing a part, the role of supportive father because it made him feel like the better person. In reality he has always thought I was a lousy daughter, lousy mother,lousy Christian - apparently he decided that since we did not raise the boys in the exact way he approved of, I could not possibly be "saved" - and I am a major disappointment because he wanted me to become a concert pianist, I career I stopped pursuing when dh and I decided o have children. The disease, as the therapist said, caused him to lose his filter so he can no longer maintain his act.

 

Additionally, through the course of all of this, it has come out that my sister (nearly fourteen years younger than me and eighteen younger than our brother) was badly emotionally and mentally abused by him as well as some physical abuse too. He did it to her after Dave and I left home. Since we lived a long distance away, we didn't know, and it got awful enough that mom threw him out of the house for while when she was twelve. We never knew any of this. So I have some serious issues with my mom for taking him back. When sis finally divulged this information, she did make it clear that things were much improved when shr took him back because mom told him he could not touch her or even speak to her except in polite pleasantries such as "please pass the salt", and "Have a nice school day."

 

Sis is still desperate for his approval which she will never get.

 

Dave and I are left reeling because the person we thought was a decent fellow was in fact horrible. We were gaslighted and lived in a big lie with little sis a causality of his anger and disappointment that his life did not turn out the "right" way.

 

This diseasr did not steal anything from me because I never had it to begin with.

 

All of the hive encouragement is MUCH appreciated. Thank you so much.

 

This sheds some new light on some sharp corners of the story...but Faith, it's still true. You are grieving. You are grieving way more now than I thought when I wrote my first post. You are now grieving the image of a family you had that turned out to be false. This type of revelation is some of the most painful experience we can go through. The feeling that everything we held dear turned out to be a farce.

I would still suggest you purposely grieve the father you apparently never had.

Your mother showed backbone by telling him to leave. You may never know all the underlying currents of their relationship but you expressed the wish to cultivate a good relationship with her and it seems like you are taking the steps to achieve that. Also, since she obviously knows your Dad, it is likely she does not agree with everything he does/says but feels like maintaining peace in his last days. She may well be a different woman when this is over and she has had time to work through it.

 

 

Edited November 29, 2016 by Liz CA

[TravelingChris]

I am so sorry Faith about the extreme lie your father lived.  What a horrible bitter man.  Prayers for your family.

[creekland]

I'm sorry Faith - for all that has gone on.

 

If it helps, remember we don't choose our parents, but we can be grateful we have our lives and our lives don't have to be what they want them to be.  We also don't need to follow in their footsteps personality-wise.  Some cycles need to be broken.  Our world benefits when they are.

 

It's not wrong to wish for the end to come.  I think it'd be more wrong to wish for a longer unhappy ending.  I suspect your DNA donor consciously or unconsciously wants the end to come and it's why he hasn't done more to help himself.

 

Best wishes to you as you deal with all of this.   :grouphug:

[Amira]

:grouphug:

[PrincessMommy]

I'm so sorry about all of it.  So sorry that you all have suffered so much from him.  :grouphug:

[Guest]

They are people of their times. I know so many who were physically abused as children and are so grateful for their second grade teacher quietly slipping the word to the principal, who had the man to man chat and ended it. You cant change the nature and nurture that lead to it, but you did break the cycle. Its not uncommon ime for those exiting to express regrets and bitterness. This is not what they imagined and they may feel tossed on an uncontrollable sea with very high waves.

[SproutMamaK]

I have no words of wisdom, but just wanted to give you some virtual hugs and express my support. You're doing hard things, and doing them with as much grace as possible. 

[Heatherwith4]

Faith :grouphug: :grouphug:

[Valley Girl]

I'm so sorry that you've had this terrible revelation on top of everything else. I can only imagine the hurt and sense of betrayal. If you can, try to take comfort in the thought that HE is the one who has lost out. YOU have created a loving family where relationships are true and deep and lasting. Peace, Faith.

[goldberry]

Checking in today, thinking of you, Faith..  :grouphug:

[Anne in CA]

FaithManor,

 

My poor MIL had to deal with the fact that her parents were selfish horrible people when they died and she read their correspondence. They thought they had destroyed all the negative correspondence that showed who they really were, but they missed a few things. She contacted people who then told her the other side of her parents. She was over sixty, they were gone and she couldn't confront them over some horrible things they had done to her that she had never understood they had done, she thought the terrible things were just bad luck.

 

It is devastating. My dh to this day doesn't talk about it at all, because they were his beloved grandparents. The fact that they had secretly done so many vile things is something he can't face now.

 

You are not alone. Many things come out when people die/ get ready for death. I do believe that you are already doing better than anyone else in this situation I have known. You are not letting their poison poison your own family. That. Is. Huge.

[Luckymama]

Oh FaithManor :grouphug: I have no words to express my feelings right now.

 

:grouphug:

[FaithManor]

Thank you everyone! I really appreciate the support. He saw a clinic doctor today who kind of went off on him - which made my mom all defensive...sigh... - and really didn't give him a choice but to be admitted to a decent hospital with an infectious disease specialist. Looks like it is pretty serious.

 

I am at home with a Mocha and chillin'.

The rocket team had their presentation to NASA today and they did a really grwat job. I am so proud of them, and find immense satisfaction in being their mentor. So I decided to do some self care instead of being a dutiful daughter and going to see him which would only result in him being snarky and her defending him.

 

Mocha, Debussy, a dark chocolate truffle, and my new book "The Wives of Los Alamos". I planned steak, broccoli, and mushrooms for supper to celebrate the presentation going off so well. (Our budding aerospace engineer boy handled 1/3 of the entire presentation plus questions as team captain while the other 5 handled the remaining 2/3.) They were given the go ahead to build their subscale model which is basically a NASA greenlight and congratulated for picking an interesting scientific payload. I feel like we need to relish the accomplishment and not get bogged down in a situation that cannot be fixed by anything I do or so not do.

 

Dna donor is very interested in the rocket team despite his anger at me. So IF I ever go visit while he is hospitalized, I will take him a copy od their 88 page preliminary design document. He was a missile technician foe the Air Force way back in the day so does enjoy reading the schematics and such. I figure it is a way for me to show kindness without getting sucked in and being hurt.

[Liz CA]

Dna donor is very interested in the rocket team despite his anger at me. So IF I ever go visit while he is hospitalized, I will take him a copy od their 88 page preliminary design document. He was a missile technician foe the Air Force way back in the day so does enjoy reading the schematics and such. I figure it is a way for me to show kindness without getting sucked in and being hurt.

 

This sounds like a very good path to take. I know why you wrote "IF" in capital letters but let me just say that you will likely not regret going when you remember this years from now...but you may regret not going once he is gone.

You cannot change who he is but you can always be the bigger person. :)   :grouphug:

 

Oh...and the mocha is also an excellent idea. For chocolate I suggest Theo's if you like dark choc.

Edited November 29, 2016 by Liz CA

[gaillardia]

:grouphug:  :grouphug:  :grouphug: 

 

I can relate to a family member dying of cancer and another family member being a narcissistic bastard. 

 

Oh, and being the unhelpful, bad one, yep, that's me. The one who took care of everything. I can definitely relate to that, and it messing with my family. 

You are strong. 

Personally, I would be keeping in touch with a real doctor, a nurse, a therapist or even contacting hospice. My family member did not want hospice either, because that would have been a surrender. But we did it, thank goodness. Morphine was a big issue as well. 

 

:grouphug: 

 

 

[azucena]

I am so sorry for your difficult situation, Faith.  :grouphug:

[FaithManor]

I know Liz. I feel like I could go tomorrow night and manage it. The hospital is an hour and half drive each direction and so if he got ugly, I have to deal with my emotions on a good long drive home. I have decided that not only am I not willing to ruin things tonight for dh and ds, but I need to do it when I am really in control...channeling my inner Spock. I have to drive past the corner where the car accident that nearly killed ds and I two years ago happened. So it is simply not a good idea for me to make the trip impulsively or when already upset.

[NorthwestMom]

Faith, you are handling things absolutely beautifully in an absolutely devastating situation. Kudos to you for your strength. 

 

:grouphug:  :grouphug:  :grouphug:

[OneStepAtATime]

I know Liz. I feel like I could go tomorrow night and manage it. The hospital is an hour and half drive each direction and so if he got ugly, I have to deal with my emotions on a good long drive home. I have decided that not only am I not willing to ruin things tonight for dh and ds, but I need to do it when I am really in control...channeling my inner Spock. I have to drive past the corner where the car accident that nearly killed ds and I two years ago happened. So it is simply not a good idea for me to make the trip impulsively or when already upset.

Makes a ton of sense.  And  :grouphug:  :grouphug:  :grouphug:

[happi duck]

(hugs)

[Carol in Cal.]

Dave and I are left reeling because the person we thought was a decent fellow was in fact horrible. We were gaslighted and lived in a big lie with little sis a causality of his anger and disappointment that his life did not turn out the "right" way.

 

This diseasr did not steal anything from me because I never had it to begin with.

 

You know, he could have been gaslighting the psychologist just as well.  I'm not sure that I would entirely believe what the doctor told you.  I wouldn't disbelieve it either.  I would just reserve judgement.

 

What is clear is that there is something seriously ugly there, but I'm not completely sure that the exact parameters will ever be clear.  People are so complicated.  He might have been proud of you and wistful about your piano gift at the same time--and this would come out VERY ugly under stress when he's expressing everything in partially loonie and entirely negative terms.  By the time he was seeing that doctor, he was already pretty messed up I'll bet.  Who knows whether he was in his right mind at all.

 

(((Faith)))

[mominco]

:grouphug: FaithManor

[maize]

You know, he could have been gaslighting the psychologist just as well. I'm not sure that I would entirely believe what the doctor told you. I wouldn't disbelieve it either. I would just reserve judgement.

 

What is clear is that there is something seriously ugly there, but I'm not completely sure that the exact parameters will ever be clear. People are so complicated. He might have been proud of you and wistful about your piano gift at the same time--and this would come out VERY ugly under stress when he's expressing everything in partially loonie and entirely negative terms. By the time he was seeing that doctor, he was already pretty messed up I'll bet. Who knows whether he was in his right mind at all.

 

(((Faith)))

I've hesitated to say this because I don't want to imply that I mistrust Faith's interpretation of a situation she obviously knows much more intimately than I do, but it has been niggling at me that things people say when their brains are not fully functioning should not be taken at face value.

 

When my dh's mental health is poor, he turns extremely judgmental and negative--and here's the kicker: he believes that the way he perceives the world at that moment is the way he has always perceived it. So, if at the moment he feels that I am a terrible, horrible, no-good, very bad wife who has never been anything but a burden to him--he truly believes that he has always thought and felt that way.

 

Those feelings disappear though when his mood improves (either through natural cycling or a change in medication).

 

It worries me to see someone re-write their entire interpretation of a person's character based in part on things said and done when that person's brain is not fully functional. And I've not been impressed with the ability of psychologists to distinguish between reality and a client's twisted perceptions of the moment.

 

The earlier abuse was obviously real. I just... struggle profoundly with hearing condemnation of mentally ill people after living for fifteen years with a spouse who suffers from chronic mental illness. I will be the first to acknowledge that his behaviour has at times been (verbally and emotionally) abusive, but I have also been an intimate witness of the struggle that life is for him and how hard he has to work at maintaining the kind of mental stability that comes naturally to me. He has benefited immensely (our whole family has benefited) from being born in an era when mental health care is improving dramatically. I wonder how much of pain and abuse might some day be overcome through better understanding and treatment of malfunctioning brains.

 

Faith, please don't take this as in any way indicating lack of support for you. I think you are dealing very well with an extremely tough situation. My musings are primarily an exposition of the way I personally filter and interpret things through the lens of my own life experience.

[Carol in Cal.]

Just to be really clear, Faith, I don't think that you're wrong to do what you're doing.  I think you're being almost inhumanly kind in ridiculous circumstances.  My post above was more intended to say, the whole thing about how for many years you didn't know the truth and now you do might not be the entire truth EITHER, and the psychologist might not have ever seen anything else so has no way of knowing what is true and what isn't.  I hoped you would take some comfort in that.

 

It's a characteristic of extreme pain and of mental illness to drive people toward negative interpretations of things, and often to read them back into the past, not always accurately, or at least not entirely accurately. 

[FaithManor]

I can appreciate your perspective Maize. In my case however, in his papers werr found things he had written about me when I was a child, teen, and young adult and all were nasty. He was angry I turned out to be a girl. Angry that left his church when I became an adult. Angry that I gave up my performance career. Angry that I did not marry "the right lind of boy", and the list is a mile long. He wrote to work colleagues that I was a colossal disappointment and a has been. This is not some recent development for him. The abuse heaped on my sister was specifically because of his raw disappointment at my mom for not getting her tubes tied sooner and once again, not getting the much wanted son.

 

He hid a lot of it pretty well from us for a long time because the others in the family, at work, and in the community to whom he vented chose not to share with us.

 

So unfortunately this cannot be excused due to his current condition.

[Carol in Cal.]

I can appreciate your perspective Maize. In my case however, in his papers werr found things he had written about me when I was a child, teen, and young adult and all were nasty. He was angry I turned out to be a girl. Angry that left his church when I became an adult. Angry that I gave up my performance career. Angry that I did not marry "the right lind of boy", and the list is a mile long. He wrote to work colleagues that I was a colossal disappointment and a has been. This is not some recent development for him. The abuse heaped on my sister was specifically because of his raw disappointment at my mom for not getting her tubes tied sooner and once again, not getting the much wanted son.

 

He hid a lot of it pretty well from us for a long time because the others in the family, at work, and in the community to whom he vented chose not to share with us.

 

So unfortunately this cannot be excused due to his current condition.

Then he has been a fool for a long time.  Because you are awesome.  He's missed everything that is really good in life, and you have not. 

[FaithManor]

Then he has been a fool for a long time. Because you are awesome. He's missed everything that is really good in life, and you have not.

Thank you, Carol! You made me cry, but in a good way. And despite his anger at my failure, he seems to miss the fact that I can play Debussy's Claire de Lune or Chopin's Nocturne in Eb and practically tame wild beasts. Piano lessons and my college music department really weren't wasted on me.

 

Sigh...thank God every day for my husband and wonderful children!!! And I make no judgments at all on anyone for their career choices when their children are young, but for me, I do not regret dropping the master's in piano performance before completion. My life has been profoundly blessed as a music teacher and music therapist.

[maize]

I cannot imagine living life with that much bitterness and anger.

 

I'm glad you are able to see the value in your own choices; you've given your children a wonderful, solid foundation in life.

 

Thanks for not getting upset at my questioning of your reality, I did know that I had a limited perspective on your particular circumstances and it sounds like there really is a lot of long term rottenness.

[Liz CA]

You know, he could have been gaslighting the psychologist just as well.  I'm not sure that I would entirely believe what the doctor told you.  I wouldn't disbelieve it either.  I would just reserve judgement.

 

What is clear is that there is something seriously ugly there, but I'm not completely sure that the exact parameters will ever be clear.  People are so complicated.  He might have been proud of you and wistful about your piano gift at the same time--and this would come out VERY ugly under stress when he's expressing everything in partially loonie and entirely negative terms.  By the time he was seeing that doctor, he was already pretty messed up I'll bet.  Who knows whether he was in his right mind at all.

 

(((Faith)))

 

Yes, this...a person in pain and afraid to die may say or do a lot of irrational things.

[FaithManor]

Just an update. He has been taken to the infectious disease ward of a larger teaching hospital. No word on what the infection is. I woke up today with a sore throat and a headache pounding behind my eyeballs. I will NOT be going over. Given the very terminal nature of his condition, I am not worried about what he is exposed to because if everyone stayed away this time of year due to bugs going around, my mother would be 100% isolated. Michigan from Nov. - Mar. is nothing but a large petri dish of bacterial and viral mayhem. But I would not ever want to make things worse for other patients. That is one serious floor of a hospital to be admitted to so unless my mom loses it completely and I must go, I will keep myself home with lozegers, aspirin, vaporizer, and vitamin c while I wait it out. If she must have me, it will be surgical mask and gloves for me.

[Guest]

Do they even allow you in if you are ill?

I am attempting to change specialists, and part of my criteria is protocol. Where I am at currently doesnt allow ill helpers to mix with the immune compromised patients, but some of the smaller, rural offices I have checked out do.

[FaithManor]

Yes, this...a person in pain and afraid to die may say or do a lot of irrational things.

A quote from 26 years ago out of a letter he wrote to my aunt, "She will probably never amount to anything. She thinks she is smart. But she isn't."

 

This wasn't because he was dying and lashing out. 26 years of putting a smile on his face and saying "I love you" to my face while spewing hatred and crap about me to his friends and relatives.

 

In that same letter, he called my brother a financial sponge. My brother was at that time a college graduate with a great job at EDS, wife, one child, owned a house, did not ask for a dime from my parents.

 

Maybe he kept up a steady stream of lies to make himself feel superior, feel better about his own life choices. I don't know. I do know that I am done with him. I feel no connection, not a spark. It has become as if I never knew a father figure.

 

That is okay though. I have this little man in my life, Nathaniel, and he is 1w months old leading his mommy, my dd, and her hubby on a wild goose chase now that he walks independently. He is a total treasure to me. I will preserve my emotional energy for being a wonderful grandmother, for my own kids and husband.

 

Thanks everyone for listening. Coffee, scrambled eggs, and curling up by the Christmas tree is calling me!

[PrincessMommy]

Do they even allow you in if you are ill?

I am attempting to change specialists, and part of my criteria is protocol. Where I am at currently doesnt allow ill helpers to mix with the immune compromised patients, but some of the smaller, rural offices I have checked out do.

 

The other side of the coin is that FaithManor also shouldn't expose herself to serious infectious diseases while she is fighting off a cold/virus herself. 

 

Feel better soon, Faith.  Thinking about you today.

 

[Joules]

“To know even one life has breathed easier because you have lived. This is to have succeeded.â€

― Ralph Waldo Emerson

 

There are a large number just here on the board who, like me, are incredibly grateful for your compassion and advice.  In your "real" life, I know you have touched thousands.

 

There is an enormous staff at the hospital to help him and your mom.  Don't feel bad about taking care of yourself and your family right now.  

[FaithManor]

Thank you HeighHo and Princess. I do not know what the protocol is. My assumption is that if he were to deteriorate and they wanted family to see him before he died, they would have a way to arrange it. Maybe isolating him or putting him in a hospice room or something. Not certain.

 

I have no intention of going over there. I am not going to get staph or mrsa or aomething and bring it home to my family if I can avoid it. But if he was imminently dying and I did not want her to be alone with him, I would ask the staff what to do.

[FaithManor]

Thank you Joules. I am curled up on the couch next to the Christmas tree...the zany tree...the one I turned over to the teenage sons to decorate culminating in toilet paper garland with Dr. Who and Star Trek ornaments mixed with signs like I Love Bacon. It is one goofball tree and I am relishing it.

Edited November 30, 2016 by FaithManor

[creekland]

Faith, we've always thought we were pretty darn similar, but this is one area where our families differ.  My dad, in spite of his mental issues, still thinks I'm awesome along with all of my boys.  That could change tomorrow and I'd be written out of his will.  It's happened before more than once, but right now that's where it stands. I wish your dad could include you - at least in phases or at times - as my dad does.   :grouphug:

 

(My sister, who has done more for him physically is out...  :glare: , so yes, there are still mental reasoning issues.  The two of us talk freely about them and know whoever is "out" at the time won't be when the will actually gets executed.) 

 

Overall, I see this as a very valid excuse to treat yourself to a nice Christmas (and life) with your family - doing for them what your dad should have done for you.  You already have a great start.  It truly is nice seeing cycles broken for the better.  So often (via school and elsewhere) I see cycles getting repeated.  That has an extra layer of sadness to it.

[maize]

Thank you Joules. I am curled up on the couch next to the Christmas tree...the zany tree...the one I turned over to the teenage sons to decorate culminating in toilet paper garland with Dr. Who and Star Trek ornaments mixed with signs like I Love Bacon. It is one goofball tree and I am relishing it.

That sounds like a true one-of-a-kind tree!

[zoobie]

Just an update. He has been taken to the infectious disease ward of a larger teaching hospital. No word on what the infection is. I woke up today with a sore throat and a headache pounding behind my eyeballs. I will NOT be going over. Given the very terminal nature of his condition, I am not worried about what he is exposed to because if everyone stayed away this time of year due to bugs going around, my mother would be 100% isolated. Michigan from Nov. - Mar. is nothing but a large petri dish of bacterial and viral mayhem. But I would not ever want to make things worse for other patients. That is one serious floor of a hospital to be admitted to so unless my mom loses it completely and I must go, I will keep myself home with lozegers, aspirin, vaporizer, and vitamin c while I wait it out. If she must have me, it will be surgical mask and gloves for me.

:grouphug:

 

Your mother made her choices too. She's chosen to enable a narcissistic abuser at the expense of his victims. DH and his brother had to go through this with their parents. Mother has BPD and is the obviously abusive one. They kept trying to make excuses for their dad, but he was the one allowing them to be abused and drawing them back in for more abuse time and time again. Anyway, they're both culpable for the abuse, and you don't need to subject yourself to it for any reason.

 

I hope you (physically) feel better soon. :grouphug:

[TravelingChris]

Also, I hope you can take some comfort that many people here are praying for you and putting out good thoughts for you.

[DawnM]

Oh my gosh. I am so sorry.

[maize]

How are things going Faith?

[FaithManor]

Hi everyone, I was sick Thursday and Friday but had five hours of NASA phone conferences to solve an engineering hiccup we have and three hours of teaching the kids to calculate drag coefficients and descent velocities. Then today despite feeling like my voice was going, five hours of teaching and supervising the sub scale rocket consteuction so guess who has laryngitis?

 

Gah.

 

So the exterior skin infection is cellulitis. Internally staph. The permanently collapsed lung is now producing enough pleural effusion to require near constant draining. They need to replace his chest tube but can't risk surgery. So until the fluid tests negative several times for staph, he has to have needle aspiration through his back which is painful. He is taking a lot of morphine and not talking much.

 

Despite the laryngitis, I will be going over tomorrow wearing a surgical mask because he is very weak and she is struggling emotionally. My brother has been there twice. She loves to have him around, but he is not yet cleared to drice since his stroke, so he cannot go often due to the hours his wife is working.

 

My sister gets here the 12th. She is not happy with me at all. Oh well.

 

I want hospice involved but they are adamant. So I think we need to have the discussion of nursing home because he is going to be too weak for her to care for. My sister is staying for a month so if she wants to do his care through that time, he could make it through the holidays at home. Potentially.

 

I don't know really what the prognosis is just that mom cannot take care of him unless he has another rally and bounces back a bit, toileting, showering, low fall risk, etc. and then only if a nurse is going to be sent in a couple times per week to keep an eye on things.

[Guest]

Hospice seems like a much more sensible choice. Keep us posted, we are still praying :grouphug:

[FaithManor]

Hospice seems like a much more sensible choice. Keep us posted, we are still praying :grouphug:

Thank you so much!

[idnib]

Oh my goodness, especially to your update in post 46. What kind of fresh hell is this?

 

:grouphug:  :grouphug:  :grouphug:

 

You've done the right thing, you're doing the right thing, and you're going to do the right thing in the future.

 

I'm upset that something so heinous is happening to such a caring and thoughtful boardie.

Edited December 3, 2016 by idnib

[Twigs]

:grouphug:  :grouphug:  :grouphug:

[NoPlaceLikeHome]

:grouphug:  :grouphug:  :grouphug: