My father wishes he were dying but he isn't... yet.
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04-10-2015, 12:48 AM (This post was last modified: 04-10-2015 01:33 AM by DLJ.)
My father wishes he were dying but he isn't... yet.
My father suffers from trigeminal neuralgia. Essentially, it is a condition in which the myelin sheath surrounding a large nerve cluster in the face has worn away and so the raw nerve grinds against muscle and bone causing intense pain.

Trigeminal neuralgia is also known as "suicide sickness." The pain is known to be more intense than almost any other pain known to man and only becomes worse with time despite treatment. For the past week my father has rolled around in an ICU bed in pain on hydromorphine (an opiate) and lidocaine (a numbing agent) and about 4 other medications trying to keep him from dying of the shock from sheer nerve pain.

The primary concern is a heart attack as Dad has had an arrhythmia for several years along with high blood pressure and diabetes and possibly respiratory failure from the lidocaine drip. Normal opiate pain medicine are mostly ineffective against nerve pain, and even the ones prescribed by a neurologist have proved mostly ineffective.

My father has had this condition for over 10 years but only in the past 2 weeks has it become what it is now; he screams 24 hours a day in agonizing pain, and only when large, dangerous dosages of lidocaine are directly injected into his face does he have pains where he is silent, but still makes the agonizing, open mouth, silent scream of a person experience a drug-induced silent pain. Unfortunately the condition is not terminal and he will not die unless he has a heart attack or a complication from the medication.

Trigeminal neuralgia is not deadly, it simply causes unbearable and intense pain, hence the nickname "suicide sickness." My father is far too religious to kill himself. If I were in his shoes, as an atheist, I would've eaten my gun 3 days ago. I do not have children and my work hours are odd so I have spent several midnight shifts watching over him in the ICU.

I write you because last night after I was relieved from my shift by one of my sisters, my father apparently decided in a rare moment of drugged lucidity that he would tell his children what he thinks of them. To my middle sister, who left my father's specific religious denomination a decade ago, he tearfully told her the following, taken in direct quote from a text message:

"He [our father] was sobbing and crying and holding my hand and telling me how sad he was that I wasn't going to heaven. That I don't have the right faith. He was crying and crying tears down his face because that's what he really feels. I [my middle sister] was crying and on my knees by his bed and he wouldn't let go of my hand and he kept squeezing it harder and harder. The nurse had to make him let go of my hand and tell him to stop."

This is from my middle sister who is still religious, but not a member of my father's very conservative branch of the Church of Christ. You know, the branch where playing an instrument during worship service deserves Hell. He thinks this of my sister, who is a wonderful person and a liberal, yet still observant, Christian.

My father is not aware of my atheism and I am intent on lying to him until he is dead, for both of our sake. He expresses concern because the church I used to attend after I left his ultraconservative church practices a slightly more liberal form of Church of Christ doctrine, i.e., they occasionally clap during worship service.

I have long since stopped attending but I pretend I still do to prevent problems. I wish I would’ve had a serious discussion over biblical doctrine and his and my beliefs years ago, but his condition made it so that any long conversation where he had to speak and move his mouth caused him intense pain, even before this most recent horrible 2 week period. Years ago I gave up having a serious discussion with my father because of his inability to talk without agony.

Now that my father truly wishes to die, as he expressed to me at the hospital overnight for the past several nights, what do I say to him regarding religion?

I am content to lie as I have for several years, but there is a part of me who wishes we had had the discussion, had had the yelling fight, had shouted each other down over our beliefs and feelings and interpretation of scripture.... but it's too late for that.

I will never have this talk with my father, even though I now so strongly disagree with him, and... I don't know what to do?

My father is/was an intelligent man, especially in the defense of his faith. I wish so badly I could argue with him about it, but his ability to show that intelligence, to have that discussion, is long gone because of his pain.

I feel that I missed something very important, and I don't know how to make up for it.
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04-10-2015, 01:41 AM
RE: My father wishes he were dying but he isn't... yet.
Oh boy! I can't even come close to imagining what that's like ... for him or for you.

You have my sympathy.

Hug

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04-10-2015, 03:17 AM
RE: My father wishes he were dying but he isn't... yet.
Hug

NOTE: Member, Tomasia uses this site to slander other individuals. He then later proclaims it a joke, but not in public.
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04-10-2015, 05:57 AM
RE: My father wishes he were dying but he isn't... yet.
The fact that you've kept quiet for your father's sake - even though you want to discuss your atheism with him PROVES that morality and caring does not come from some invisible guy who lives in the sky -- but from within you.

If you say anything about atheism, you'll probably have an ugly time of it to the end.
If you keep mum, you'll make things as easy as can be for your father (not that it's easy in the slightest).

From what I see - you've the most to gain by giving.

.......................................

The difference between prayer and masturbation - is when a guy is through masturbating - he has something to show for his efforts.
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04-10-2015, 06:12 AM
RE: My father wishes he were dying but he isn't... yet.
Let him die in peace - don't add to his agony. It would be a very selfish thing to do.

And, why don't the docs let him die when it is his wish? He is saying things he would never say without the present situation.

My mom was in a similar situation (not quite as painful) and refused further treatment with exception of palliative care (pain meds).

If he wants to die and would do so without medical intervention (You say he gets 4 meds to keep him from dying), why on earth are people forcing him to suffer?

Those are the real issues here in my view. Docs give extra strong doses of opiates every day of the week to eliminate pain and facilitate death. It's the big "secret" in hospitals. All you do is beg for him to get more pain meds....

Your telling him what you think of religion is nothing important now. It doesn't even rank in the whole picture of a man in insufferable pain who is being kept alive against his wishes.

In pain like that one's judgement is severely impaired, and any conversation about religion you can have with him now is just a painful, jumbled mess and both of you will be miserable. What's the point of that?

[Image: dobie.png]Science is the process we've designed to be responsible for generating our best guess as to what the fuck is going on. Girly Man
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04-10-2015, 07:35 AM
RE: My father wishes he were dying but he isn't... yet.
I am sorry you are going through this. Witnessing a drawn out painful end of life is very difficult...there came a point with my dad that one of the nurses came out of his room and slumped against the wall in tears. She said the only way to give him enough meds to ease his pain would be to give him a lethal dose. Of course, she couldn't do that.

At this point, there is no need to add to any of his pain, literally or figuratively. As the others have said there is no need for the religion conversation now. No one involved is in the right head space to tackle it anyway - no good would come of it.

As for soothing your wish that you had the conversation - that wish may remain with you for a while. I had a couple topics I wished I had talked to dad about before he died. I had those conversations in my head after he was gone...many times. His side of the conversation won't ever happen and after a while I accepted that.

My sympathy to you, your father, and the rest of your family.

See here they are the bruises some were self-inflicted and some showed up along the way. - JF

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04-10-2015, 08:13 AM
RE: My father wishes he were dying but he isn't... yet.
I'm sorry you're having to live through this nightmare. It's never easy to watch loved ones suffer.

My brother and I have an agreement to remain in the closet *at least* until our grandparents die - it would be unbearably cruel to them as they would never understand our atheism and they would die worried about us being damned for eternity. It's much kinder to your suffering father to keep quiet than to add to his misery.

I've seen trigeminal neuralgia flares in the ED, but certainly not to the extreme with which your father is experiencing - this is *not* my area of expertise. Here's my two cents: if he's not at a research hospital, start looking for a second opinion and having him moved to one attached to a medical school if at all possible. I'm not sure we're you are, but I'm thinking hospitals the caliber of Cleveland Clinic, Boston, Duke, Vanderbilt, Mayo, etc... You want to be where they are willing to do experimental procedures.

And you're right, Dilaudid does jack shit for nerve pain. All it's doing is making him high.

Disclaimer: My advice should *always* be considered friendly and not professional. And I've had half a bottle of Pinot Noir after just getting off of my third night shift in a row.

"If there's a single thing that life teaches us, it's that wishing doesn't make it so." - Lev Grossman
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05-10-2015, 05:48 AM (This post was last modified: 05-10-2015 05:53 AM by theophilus.)
RE: My father wishes he were dying but he isn't... yet.
(04-10-2015 12:48 AM)kordavox Wrote:  Trigeminal neuralgia is also known as "suicide sickness." The pain is known to be more intense than almost any other pain known to man and only becomes worse with time despite treatment. For the past week my father has rolled around in an ICU bed in pain on hydromorphine (an opiate) and lidocaine (a numbing agent) and about 4 other medications trying to keep him from dying of the shock from sheer nerve pain.

Have any of the doctors considered surgery? Here is a link to the Mayo Clinic website that discusses several treatment options including surgery.

http://www.mayoclinic.org/diseases-condi...n-20043802

It might be a good idea to show this article to the doctors who are treating your father and ask them if any of these treatments could help him.

The information in ancient libraries came from real minds of real people. The far more complex information in cells came from the far more intelligent mind of God.
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06-10-2015, 09:41 AM
RE: My father wishes he were dying but he isn't... yet.
I read an article of a young teen who suffered this pain. Surgeons went in behind her ear and placed a thin slab of silicone to prevent the nerves from rubbing. No more pain. I too had them off and on for 10 yrs. What worked for me was a drop of lidocaine in the corresponding nostril as high as I could get it when lying down. This greatly reduced the severity of the attack and how long it lasted. Why they stopped is beyond me but it's been over 10 years now. You need to research what other countries are doing for this. My nephew was crippled with excruciating back pain for two yrs. Finally went to Germany and walked out of the hospital pain free and is back at work. India is doing some brilliant surgeries. They are always depicted as a backwards country but it is leading the field in medicine.
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06-10-2015, 11:43 AM
RE: My father wishes he were dying but he isn't... yet.
I am so, so sorry you are experiencing this; I sympathize because I housed and cared for my very religious father for five years before he died of Parkinson's disease. He was extremely pious, and it would have been very painful for him to learn that I had become an atheist while caring for him, partially because I saw him suffer so much for no good reason.

I don't regret not telling him though, and I continue to maintain the pretense of Catholicism for my mother's benefit too: it costs me very little and since she's 93, I probably won't have to keep lying for very long. Where's the harm? I wouldn't tell a 6-year-old terminally ill cancer patient that Santa doesn't exist either.

Sometimes you have to ask yourself: Do I prefer being right, or being happy? (or in this case, being truthful or being compassionate towards your father, who is suffering enough as it is)

Your faith is not evidence, your opinion is not fact, and your bias is not wisdom
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