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

[FaithManor]

My mother's husband - formerly known by me as "dad" but that ship sailed more than a year ago with some mind bogglingly egregious decisions he made coupled with extreme verbal abuse of me - decided in April to end his palliative care chemo for some serious hocus pocus "herbal" cancer cure. We figured, his choice, whatever and have voiced no opinion. He has the world's most unmotivated primary doc who has taken over his care, care being a really loose term in this case as office visits average three minutes and unless my mom gets snotty during them, he checks on nothing. No bloodwork, doesn't even examine the permanent chest tube/tunnel catheter, etc. My primary, a lovely, attentive doctor has offered to take him despite otherwise not accepting new patients, but nope, my dna donor will not budge.

 

Anyway, my mom has allowed her husband with permanent brain damage, court ordered psychiatric care due to suicidal/homicidal tendencies (long, long story), and terminally ill, to continue to make all the decisions for both of them. She doesn't want to upset him! And his decisions are so collosally bad that they are ending up bankrupt, losing everything while her health is rapidly going down the tubes because he only wants to be cared for by her and says he won't allow a nurse into the home.

 

He started sporting a temperature 102-103 Saturday. The oncologist (a wonderful, wonderful man whom I cannot say enough good things about) and the cardio-thoracic surgeon (another stellar physician) warned them, and warned them, and warned them that an infection in that tube can be quickly lethal, and that stage IV cancers when they metastasize to specific areas can cause fevers so ALL fevers must be aggressively diagnosed from the start in order to prescribe the best pallitive care.

 

So did she take him to the ER? NO! Did she call the emergency number for his oncology team? No. Did she call his primary doctor's emergency line? No. Or any of the three nurses in their church? No. He did not want to bother anyone, and she did not want to upset him. She waited 36 hours and let it hit 104.5 on double doses of both advil and tylenol before calling anyone and then the phone call was to dh to see if he would run down there and help her get him up off the floor where he had passed out and loaded in the van to go to the ER. Dh said no, he would come down to wait with her for an ambulance. Ding dong didn't want an ambulance so she called a neighbor and is now hating on dh for not helping. I was on my way home from Kalamazoo, dropping P back at college. I feel dh made the right call. His assumption was that she wanted to have him taken to the hospital in the city where his oncologists and really good medical team are so he felt that a two hour ride sitting up in a car as fragile as the man is was a bad idea....ambulance with paramedics was necessary. Nope she took him to the little country ER because "it would be cheaper". They have medicare and secondary insurance so this was a stupid decision. Little ER is barely functional, not equipped for much so anything beyond stitches, clean uncomplicated breaks, etc. are turfed to the city anyway. So she drove him, he passed out again in the car, gah...it was insane! They immediately wanted to send him on, but he refused. They took some blood, told him his chest tube was probably infected and that the very second he had a fever 100 or higher should have gone to the ER of his oncology hospital, and again asked him to transfer. Again with the NO. So then they asked him to be admitted there for observation. Nope. Stubborn jerk! And my mother agreed to it despite the fact she cannot adequately care for him when he is this weak. So four hours of IV antibiotics and hydration, and he went home with a prescription for a broad spectrum antibiotic while blood cultures are done.

 

Sigh. And they are angry with me. I was the bad sibling that sided with the court about supervised psychiatric care because I know he is a danger without it and will refuse to do it unless he thinks law enforcement will stick him in the psych ward again. I was the bad one that kept telling them his cancer was back when they refused to listen until the fur hit the fan. I was the one that knocked him on the floor the day he threatened me amd tried to hurt me. I am the bad sibling that suggested hospice, but they believe hospice is a secret death panel run by the government to euthanize people (they honestly believe that the pain meds are not pain meds). And ultimately I am the evil child because we do have space here for them putting his 24/7 care on dh and I, but I refuse because dna donor is so verbally abusive and unkind to dh and our youngest, a high school junior that I am still homeschooling. My brother recently had a stroke and cannot help, so they do not get angry with him. My sister lives in France.

 

Her parting blow to me on the phone was that he just wants to live to Christmas because my sister is coming home, and that it was horrible that I am unwilling to do my part. I said, "I cannot help him anymore. I cannot allow the two of you to rip me to shreds emotionally any longer. I have a marriage and a family to look after. If he was not such a horrible person, I would be willing to do more. However, your assertion that he wants to live to Christmas falls flat since the two of you refuse medical advise and appropriate care. I simply cannot do more because we are not anywhere near being on the same page, and I cannot allow him to continue to hurt my family. I love you, but all I can do is be available to you for emotional support, and continue to help you personally like grocery shopping, pharmacy runs, and similar things. When you are ready, I will be happy to help get hospice, and find household help."

 

Her response was not promising.

 

Sigh...

 

So I am yet again the heartless witch, the wayward child, the nasty sibling.

 

I really love my mom and want to have a relationship with her when he is gone. But the longer this goes on, the longer that the court reminds me that while they cannot legally expect me to enforce the court orders they still kind of do have that expectation anyway, the longer I deal with the court system and his social worker and his psychiatrist, the more frail she gets trying to care for him because he is too dang narcissistic to get help and she too co-dependent to say enough is enough, all the while emotionally targeting me, the more I think that if he does not die soon, she and I will never recover our relationship.

 

Is it wrong to wish that this infection is the end? It seems wrong to hope someone will die, and yet......

 

 

ETA: more info in post 46

Edited November 29, 2016 by FaithManor

[AnnE-girl]

I'm sorry. What a crappy, frustrating situation. I can't remember if you are religious, but I see nothing wrong with praying for peace for everyone in this situation, however that comes about.

[Hilltopmom]

Hugs. Hang in there.

And thinking things, even terrible feeling -hate to admit it -things, is not wrong, no.

[fraidycat]

:grouphug: :grouphug: :grouphug:

 

It's not wrong. When there is no chance of getting better, it's not wrong to wish for the suffering of everyone involved to end.

[lllll]

nm

Edited December 28, 2016 by ..Kathy..

[OneStepAtATime]

:grouphug:  :grouphug:  :grouphug:  :crying:

 

That is so heartbreaking!  I am really so incredibly sorry you are having to go through this.  I hope the relationship can be salvaged between you and your mom.  FWIW, my mom and I had a bit of a falling out over my dad when he had cancer but we did work it out.  And no, I don't think you are wrong to wish for everyone's suffering, including yours and your mothers AND your DNA donor's to just end.  This is a heartbreaking situation.  

 

As for your mother specifically, your mom is probably overwhelmed and not able to stand up to your dad.  Please try not to blame her.  What may seem perfectly logical to you is probably not something she can think through rationally.  And when she gets angry, underneath she may not really be mad at you at all but is probably needing someone she can get angry at besides your dad or herself or the situation.  You, unfortunately, end up being the scapegoat.  Which is horrible and I am so sorry you have to be that person.  

 

DH's mom went through that when his dad started having serious high blood pressure.  And then strokes.  And became permanently debilitated.  She would not force him to take his meds or see the doctor when he was in trouble, nor would she make him go to the hospital when he had one of his strokes.  She was not thinking rationally and was used to him making the big decisions.  She could not go against him and was overwhelmed emotionally.  She would sometimes lash out at her kids if they tried to force her and their dad to do things they didn't want to do.  She loves her kids.  She just needed to blame others besides her husband for the issues.  Her kids got mad at her but honestly she was not mentally or emotionally capable of going against her husband's wishes or seeing things clearly.  The relationship was not permanently damaged because eventually everyone worked hard to repair the damage.  

 

:grouphug:  :grouphug:  :grouphug:

Edited November 28, 2016 by OneStepAtATime

[Mama Geek]

:grouphug:  and prayers for you.

[Mimm]

I'm so sorry Faith. :(  :grouphug:  

 

No, it doesn't seem wrong to wish for the end. He's not well, he's not at peace. At least when he dies, he will be at peace and will no long be doing so much damage to your mother and you.

[happi duck]

many (hugs)

[displace]

:( I'm sorry you're going through this.

[TravelingChris]

NO, it isn't wrong.  Praying for peace for your family.

[bettyandbob]

:grouphug:

 

What a horrible thing for your family to go through. 

[Valley Girl]

Awww, FaithManor, you are NOT terrible for wishing that this latest development could be the end. You're not wishing him ill...you're wishing for an end to your family's suffering in a situation where there is no hope for recovery and where the patient himself is not interested in or is incapable of making appropriate healthcare decisions. Despite what anyone says, you are NOT the bad sibling/daughter. You're helping to the extent the parties involved allow without sacificing your safety, sanity, and own family in the process. Just because others refuse all reasonable help (hospice, nurses, etc.) does not obligate you to be a doormat. But you know this. You're strong. I'm so sorry you're being put through the wringer because of it. I don't wish ill on anyone, but the kindest thing for all concerned would be for nature to just take its course at this point. Feel free to vent here. I don't think you'll find anything but sympathy.

 

Edited to fix preposition.

Edited November 28, 2016 by Reluctant Homeschooler

[FaithManor]

Thank you everyone. I really appreciate the kinds words and support!

[FaithManor]

She called me a few minutes ago to tell me they are certain his vegetable diet, frankincense oil, and herbal tea is going to cure him.

 

I have a real fear that because she believes this, she is refusing to prepare herself for his death. It is frustrating to see it, but know I can not talk reason to her.

 

She likes poinsettas, and so I am getting a huge one for from my favorite florist. There really isn't anything I can do, but maybe she will accept it as a sign that I care.

[ErinE]

:grouphug: :grouphug: :grouphug:

 

My saga was not as intense as yours, but I found the little reason and logic in existence flew out the door once my parent entered the end stage.

 

*** You did the right thing in protecting yourself and your family ***

[Laurie4b]

:grouphug:  How incredibly distressing. I am very sorry. Caring for aging parents can be so difficult and it sounds like both of them are cognitively impaired. That is so hard. 

 

 

 

 

[goldberry]

:crying:  I am so sorry.  It sounds like you are handling it the best possible way.  No, it's not wrong to wish it was over.  If he has an infection and won't seek treatment (real treatment), it probably won't be long.  I am so sorry your mom can't see past this.  :grouphug:

[lllll]

nm

Edited December 28, 2016 by ..Kathy..

[OneStepAtATime]

She called me a few minutes ago to tell me they are certain his vegetable diet, frankincense oil, and herbal tea is going to cure him.

 

I have a real fear that because she believes this, she is refusing to prepare herself for his death. It is frustrating to see it, but know I can not talk reason to her.

 

She likes poinsettas, and so I am getting a huge one for from my favorite florist. There really isn't anything I can do, but maybe she will accept it as a sign that I care.

She isn't ready to face what is happening and is having to live in the moment, daily.  That is a hard place to be.  And with her physical health sliding that makes it doubly difficult since she really cannot take care of herself well in these circumstances.  

 

 I think the poinsettias are a lovely gesture.  Hopefully, somewhere inside her she will register it as such.

 

You are doing what you need to do.  She is doing what she feels she needs to do.  Hang in there.  

 

:grouphug:  :grouphug:  :grouphug:  

[Carol in Cal.]

((((Faith))))

[Corraleno]

I don't think it's wrong to hope for a quick and peaceful end to all the pain this is causing you and your entire family.

I'm so sorry Faith.  :grouphug:

[catz]

She called me a few minutes ago to tell me they are certain his vegetable diet, frankincense oil, and herbal tea is going to cure him.

 

I have a real fear that because she believes this, she is refusing to prepare herself for his death. It is frustrating to see it, but know I can not talk reason to her.

 

She likes poinsettas, and so I am getting a huge one for from my favorite florist. There really isn't anything I can do, but maybe she will accept it as a sign that I care.

 

I think it's ok if she's not preparing.  I think many, many people get to the point of death with a loved one completely in denial as a coping mechanism.  My dad collapsed and died last year without warning (he was living with a heart condition but was hiking, golfing, drinking wine, laughing with friends up to the day of his death) and we just dealt with it.  If that's the case, if you're willing to help with the arrangements and the paperwork it could help draw you together.    I have a friend whose father died of brain cancer.  Her parents had done nothing to prepare for his death.

 

Not everyone can care give in their home.   Your minor children SHOULD be the priority and I'm sorry your parents cannot see that.

 

I hope for peace for everyone soon.  It honestly sounds like he should be in hospice care.  I think choosing not to aggressively treat at this point is a fair choice for them to make.  :grouphug:

[Liz CA]

I get the part about hoping it will be over soon.

He is obviously not in his right mind as evidenced by court ordered psych care.

 

Here are a few things to ponder:

 

The man who was your father is already gone. :grouphug: There is a insidious disease raging inside him and this is impacting every facet of life right now. Try not to hold him responsible for his decisions when he is not capable of reasoning any longer.

 

Take care/help/assist your mother in any way possible as you are doing. It is likely that when this is over, she will need some decompressing time but she may surprise you and evaluate events differently in hindsight. It sounds - from what you described - that she is afraid of him right now.

 

You are angry, mad, frustrated and disappointed that this has to end like this - anyone would. But perhaps try to reframe this into grieving. As I said, you already lost your Dad. The man you are seeing now is not him. Your mother is suffering along and her decisions are her decisions as she is not mentally impaired - afraid perhaps - but still an adult in possession of her faculties even if it does not sound that way to you. Keep in mind that she may just agree with everything her husband wants to aquiesce him because she knows that it will not go on forever.

 

These are very hard times and have been. Give yourself Grace, vent here, talk to your friends IRL, do something you enjoy and grieve what you have already lost to start or continue the processing which is necessary and healthy but never easy or fast.

 

Many Hugs!

 

 

[Mabelen]

What a tragic and stressful situation! I am so sorry you have to go through this. I cannot imagine how painful it must be. You are doing the right thing. Your conscience is clear. Hang in there. Hugs.

[prairiewindmomma]

I am sorry that you are the lightning rod for their fear and anger.

 

FWIW, in our experience, it took a couple of YEARS for some of the emotion-tinged haze to wear off of the surviving spouse, but clarity did come.

 

Hugs to you. 

[maize]

Many hugs Faith.

 

I agree with Liz that this shell of a man is not the person he used to be. I don't know what kind of a person he used to be, but it sounds like physical and mental illness have claimed him 100%. I wouldn't attribute his words, choices, or actions at this point to him in any kind of a willful behavior sense; he has lost the ability to reason and make thoughtful decisions. If mental illness has been a more chronic part of his life he may never have had that full capacity.

 

I am so sorry for your family's suffering and annoyed with your siblings for having unreasonable expectations of you. I hope the misery is not drawn out and that your mom emerges from it in the end with the health and mental strength to move forward. I am confident that you yourself have the strength to navigate this. Continue to take care of yourself and your husband and children as your primary responsibilities.

[Guest]

I don't have any advice. I just want to say I'm really sorry. (((Hugs)))

[hornblower]

They'll want to keep on guilting & manipulating you till the end (& beyond). You're smart and brave to draw your lines & not let them. 

Hugs. 

[Seasider]

Wow Faith, that is such a hard spot to be in. Everything you've described is difficult way beyond normal.

 

I would also say that it's probably particularly hard on you because you are such a logical, clear thinker who would take action and make sure both have good care options, were circumstances different.

 

I wonder if the onset of your father's mental issues was far earlier than anyone realized, and perhaps contributed to his behavior that led to your falling out. In any case, you deserve hugs and kudos, for protecting your own nuclear family relationships. Take care of yourself.

[regentrude]

:grouphug:

[Twigs]

:grouphug:  :grouphug:  :grouphug:

[Guest]

He has to die on his own terms. Its rough, because the cancer is affecting him and he isnt who he was, and this wasnt how he planned to go. Your relationship cant be what it was. You mom has to adjust too, and that is rough when she cant see the forest for the trees. The poinsetta is a lovely idea. Perhaps it can establish a peaceful spot for her to have a minute to herself.

[ashfern]

:grouphug:  :grouphug:

[Melissa in Australia]

:grouphug:  :grouphug:  :grouphug:  :grouphug:  :grouphug:  :grouphug:

[Debbi in Texas]

So sorry your family is going through this.

[poppy]

Didn't want to post and not reply, but, I recently lost a parent to somewhat similar circumstances so couldn't even finish reading .... I confess i just skimmed (similar = the cancer, not similar i behavior).  I just want to say, this is so damn hard for everyone, and I think your last sentence is very natural.    I hope there can be some peace, for you and your mom, after this storm has passed.

[Farrar]

:grouphug:

 

Hospice would be the best thing. Too bad they're so paranoid. I wish I had advice for you. I don't think it's wrong to hope that the end comes for someone who is clearly suffering. Suffering can be mentally unbalanced as a result of illness as well as physically suffering.

[HS Mom in NC]

I think you're handling it brilliantly. No, it's not wrong to hope the infection ends it. The compassionate thing is to hope this ends soon because it's clearly misery and it's long passed the point of any other possibility.

We all know that even if you did have him in your home they would find a way to blame, shame and criticize every single thing you do.   That's how they operate.

Their current situation is an example of the kinds of things that happen when people lack discernment and judgement long term.  How else could their end of life situation have turned out? Kudos to you for distancing yourself from it because they just want to suck you in and blame you, they don't really want your help making it as good as it could be under the circumstances.

With sister abroad and brother having his own medical challenges mom might come around to a decent relationship with you in the future and if not, you seem to be able to distance yourself when necessary.  Sorry you have to deal with such an incredibly high level of difficulty with your family.  That sucks. The poinsettia is a nice gesture. 

[chiguirre]

:grouphug: 

[G5052]

I'm sorry. :grouphug:  :grouphug:  :grouphug: I wondered when this situation was going to come to a head for you because I know that it has been an ongoing crisis.

 

I went through scads of drama of that sort with my own mother, and it really got to me. All I can say is that there was a sad sense of closure at her grave.

 

My sibling was the "golden child," and I was the "black sheep." My sibling is seriously messed up. I can't deal with them at all. And one day I suspect I'll get a phone call there that they're either gone, or that I have to come and intervene.

[Denisemomof4]

It is SOO hard to sit quietly by and watch loved ones suffer because of their choices. When my parents were dying, I thought I would go insane myself. I get it.

 

Your mom can't think clearly now. Do what you can yo show her you care, and when dna donor is gone, that is when you can show her how much you love her. That is when she will need you most.

 

She has made her choices and has to live with them. They do not have to impact you - physically anyway.

[zoobie]

What a terrible situation for everyone. If he's not competent and she's the POA, she could be setting herself up for liability issues. If she's even competent. It sounds like a total cluster. I'm sorry for you to be entangled in that. :grouphug:

[FaithManor]

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.

[Melissa in Australia]

:grouphug:  :grouphug:  :grouphug:

 

:crying:  you are in my thoughts 

[Seasider]

Whoa. That is pretty heavy stuff.

 

You owe them nothing. Nothing.

[maize]

I am so sorry Faith.

[AnnE-girl]

I am so very sorry. Praying for peace and healing for all of you.

[Storygirl]

:grouphug: :grouphug: :grouphug:  So sorry.

[melmichigan]

I am so sorry you are going through this.  There is nothing wrong with wanting the suffering to end, for all of you.   :grouphug: