Update. Need to vent, has nothing to do with Mormonism

This is for encouragement, ideas, and support for people going through a faith transition no matter where you hope to end up. This is also the place to laugh, cry, and love together.
User avatar
alas
Posts: 1160
Joined: Mon Oct 17, 2016 2:10 pm

Update. Need to vent, has nothing to do with Mormonism

Post by alas » Thu Mar 07, 2019 10:57 am

My brother is brain injured and it looks permanent as he is not waking up. But his wife wants all the heroic measures to save him. The doctors disagree, I can tell by what they tried to tell her.

First some history. 47 years ago he was in an accident that injured his brain. He was in a coma for about 5 months, but woke up. There was extensive damage, he had to learn everything over again. He was mostly a different person. My mother voiced more than once that it would have been easier if he had just been killed.

So, this time he fell, hitting the metal plate in his head from the first injury. His wife didn’t find him for 20 to 30 min, so his brain was most likely not getting oxygen for that long. The doctor has expected that he would wake up...unless he was deprived of oxygen, and it has been three days now that, if his brain is functional at all, he would wake up. This is DIFFERENT than the first accident where there was a medical reason he didn’t wake up. With that accident there was the swelling that usually kills brain injured people. After that accident, he still responded to pain, so they knew his brain was working except for the injury. This time there is no response to pain. My other brother who is a doctor says he agrees with me that our brother is most likely never waking up. Prognosis not good. EEG is abnormal. There is no seizure activity, which the doctor brother said was one possible reason he wasn’t waking up,

But the doctor asked my brother’s wife what the family wanted if his heart stopped. She said it is a no brainer. (bad unintended pun, but then I cope by using gallows humor) but she absolutely wants him revived because she says it took him the several months to wake up with the first accident, so she is sure he is going to wake up this time. But she wasn’t around for the first accident. She doesn’t know that this is a different injury. Lack of oxygen is way different than a physical injury.

So, if you don’t want to be kept alive in a vegetive state, do your living will. Let your loved ones know that you do not want to be kept on a respirator or kept alive with feeding tubes if there is no brain activity beyond brain stem. Get your wishes on paper and have at least one person willing to give your advanced directive to the doctors. I don’t know if I am grieving more for my brother’s death or horrified that he is being kept “alive” in a vegetate state.

It is probably a good thing that I am more than 500 miles away, cause if I was in the same room as my SIL, I think I would shake her till her teeth rattle. But she has faith that God will grant her a miracle.

My niece contacted me and my other brother to set up a private messenger group because she wasn’t coping with her mother’s denial. She has tried to tell her, only to watch her mother retreat further into denial.
Last edited by alas on Sat Apr 06, 2019 9:49 pm, edited 1 time in total.

Kishkumen
Posts: 242
Joined: Sun Dec 31, 2017 11:39 pm

Re: Need to vent, has nothing to do with Mormonism

Post by Kishkumen » Thu Mar 07, 2019 11:25 am

And I'm updating my Will in the near future.

Let me die. Harvest whatever organ(s) might help another. Save as much money as possible.

So sorry for the Trauma your brother has gone through and the toll on everyone one involved. I will raise a glass to the FSM tonight that ye may be touched by His noodly appendage.

Anon70
Posts: 511
Joined: Mon Oct 17, 2016 11:56 pm

Re: Need to vent, has nothing to do with Mormonism

Post by Anon70 » Thu Mar 07, 2019 11:34 am

So sorry Alas.

Good reminder to update our papers, sad way to be reminded though.

Good luck to you and the family.

User avatar
MalcolmVillager
Posts: 640
Joined: Mon Oct 31, 2016 8:01 pm

Re: Need to vent, has nothing to do with Mormonism

Post by MalcolmVillager » Thu Mar 07, 2019 12:33 pm

Sorry for this family situation. Great reminder for all of us. These complex situations can turn into long family fights. I had an aunt who was essentially a vegetable for 8 years until the last sibling finally relented to let her go.

Sometimes it would be easier if people just died. Medical science is amazing. It can keep bodies alive when there is no brain left.

On a side note, that really made me reconsider life after death, even as a TBM at the time. Was my aunt in limbo for 8 years? Was her spirit hovering and was she observing everything in the room from an omniscient perspective?

Tough stuff. I am sorry for your SIL. This is a difficult situation.

User avatar
RubinHighlander
Posts: 1351
Joined: Tue Nov 08, 2016 7:20 am
Location: Behind the Zion Curtain

Re: Need to vent, has nothing to do with Mormonism

Post by RubinHighlander » Thu Mar 07, 2019 12:49 pm

Kishkumen wrote:
Thu Mar 07, 2019 11:25 am
And I'm updating my Will in the near future.

Let me die. Harvest whatever organ(s) might help another. Save as much money as possible.
This is my wish as well as cremation. I heard one guy even had Do Not Resuscitate tattooed on his chest because even living will and documentation sometimes gets trumped by family and medical facilities depending on what state statutes there are.
“Sir,' I said to the universe, 'I exist.' 'That,' said the universe, 'creates no sense of obligation in me whatsoever.”
--Douglas Adams

https://www.youtube.com/watch?v=YzmYP3PbfXE

User avatar
Red Ryder
Posts: 2144
Joined: Sun Oct 16, 2016 5:14 pm

Re: Need to vent, has nothing to do with Mormonism

Post by Red Ryder » Thu Mar 07, 2019 4:17 pm

Sorry to hear alas.

If you need bad gallows humor, I know a guy!

I need to register as an organ donor.

And I also vote for cremation and a beach scatter on a windy day over a nudist colony!
Those who do not move do not notice their chains. —Rosa Luxemburg

User avatar
crazyhamster
Posts: 113
Joined: Fri Oct 21, 2016 5:25 pm

Re: Need to vent, has nothing to do with Mormonism

Post by crazyhamster » Thu Mar 07, 2019 5:20 pm

So sorry to hear that, alas. I agree with those who say they would rather not be kept alive when there's no hope of recovery. I would hope that if it came to that that someone would accept that my own needs would supersede their desire to avoid grieving. I do need to get on that will thing.

Beachinmama
Posts: 5
Joined: Tue Feb 26, 2019 9:29 am

Re: Need to vent, has nothing to do with Mormonism

Post by Beachinmama » Thu Mar 07, 2019 7:50 pm

This is heartbreaking to hear about, Alas. I am so sorry. I will keep you in my thoughts and I hope you brother can slip away peacefully soon.

Your sister in law would be an angel if she would talk to him and reassure him that’s it’s okay to let go. Sometimes it’s all they need.

I agree wholeheartedly about writing out your wishes in these kind of circumstances. I have mine written down and taped to several different cupboard doors in our home.

Cremation and a paddleout. No funeral. Just a beach picnic.

Get a good nights rest and treat yourself tomorrow to some good pampering. :)

User avatar
jfro18
Posts: 1055
Joined: Mon Apr 23, 2018 8:41 pm

Re: Need to vent, has nothing to do with Mormonism

Post by jfro18 » Thu Mar 07, 2019 8:24 pm

I'm so sorry Alas -- just thinking of the situation is so heartbreaking and I can only imagine how difficult it is for you being far away and hearing all of this.

I need to do a living will... this is a good reminder of that. I have no idea what DW would do in this situation, and to be honest I have no idea what I'd do if I was given such a horrific choice.

Vent away and I'll be sending all our of positive vibes your way.

User avatar
Hagoth
Posts: 3109
Joined: Fri Oct 14, 2016 1:13 pm

Re: Need to vent, has nothing to do with Mormonism

Post by Hagoth » Thu Mar 07, 2019 8:28 pm

What a tough situation. People want to hold out for miracles. Maybe your SIL just needs some more time to come to grips with it. At least there can be gratitude that he got to live on for 47 years after the first injury.

Best wishes to everyone.
“The easy confidence with which I know another man's religion is folly teaches me to suspect that my own is also.” -Mark Twain

Jesus: "The Kingdom of God is within you." The Buddha: "Be your own light."

User avatar
alas
Posts: 1160
Joined: Mon Oct 17, 2016 2:10 pm

Re: Need to vent, has nothing to do with Mormonism

Post by alas » Fri Mar 08, 2019 2:32 pm

I lied about it not having anything to do with Mormonism. As I kind of thought about his immediate family, the denial is directly proportional to their activity/faith in Mormonism. My biological niece messaged me, my other brother and my husband because she needed someone who was willing to face facts and ask the doctors what the medical jargon actually means. Well, the doctor brother actually has a reputation of being able to communicate well with the patients and families. He can say what the medical tests mean in layman or even child terms. So, he answered my niece’s questions, the ones the rest of her family were unwilling to ask or accept. So really she is the one member of his family that is accepting that he is brain dead and we all have to be willing to let him go.

And guess what? She is the one member of that family who is out of the church, I know because she has a wife.

I have complained before on NOM about this particular SIL. She follows Oaks advice on how to deal with her gay child. Ya’ know there were no wedding announcements sent out. And suddenly my niece has a different last name.

So, it is the black sheep of the family who is the only one trying to cut through the denial. The rest of them have faith that they are going to get a miracle. I just want to hug this niece. She has been fighting her mother on the lesbian issue for some ten years now and now she is trying to both let her father go and get the rest of the family to be willing to let him go.

I do not understand the denial. It just doesn’t make sense to me. It never does any good to pretend that ugly reality is not staring you in the face. It is the same kind of mentality that makes people not want to know the facts of church history, and not want to believe that we humans are causing our planet to heat up and we are going to kill ourselves, and to think that Trump is going to make America great again. It just makes me crazy that people can think like that.

I just want to be able to have a funeral and let him go. It hurts knowing that he is gone, but we can’t acknowledge it.

Wonderment
Posts: 221
Joined: Fri Jul 21, 2017 3:38 pm

Re: Need to vent, has nothing to do with Mormonism

Post by Wonderment » Fri Mar 08, 2019 5:22 pm

I'm so sorry that your family is faced with this sad situation. I think that eventually, the doctors will be able to convince your SIL that your brother is not going to awaken. I've been through an instance like this in my own family, and it can be very stressful. Please keep us posted -- (((hugs))) from Wndr.

User avatar
alas
Posts: 1160
Joined: Mon Oct 17, 2016 2:10 pm

Re: Need to vent, has nothing to do with Mormonism

Post by alas » Sat Mar 09, 2019 4:48 pm

The doctors have done an about face, and now talk like they expect him to wake up. There have been some signs of what the doctor calls “intentional movement” and he responded when spoken to with an eye flicker. Part of what makes decisions like this so hard, is that it is so hard to assess how bad the damage is. You have to make decisions like ventilator and feeding tube before the doctors can even tell how much brain activity there really is. But when he did not wake up when they took him off heavy sedation, and then the EEG came back abnormal, with a bunch of medical jargon that translates to “damage that is generalized throughout his brain but not totally brain dead because the brain stem seems to function” they were saying things about putting him on hospice, putting a do not recessutate order, and trying to get the family to accept that he would not be waking up. They have changed direction to “care facility that can handle his medical needs until he is fully conscious.” But my doctor brother still says there is no way he will ever live outside of a long term care facility again. Most likely he will be paralyzed on the left side. It is just a matter of how much damage there is. He still isn’t breathing without the ventilator. But the doctor has hope of him regaining consciousness.

User avatar
deacon blues
Posts: 1072
Joined: Tue Oct 18, 2016 7:37 am

Re: Need to vent, has nothing to do with Mormonism

Post by deacon blues » Sun Mar 10, 2019 4:26 pm

I wish you the best through the whole ordeal. It sounds like it could drag on. I think your advice at the top about wills that stipulate a person's wishes is wise.
God is Love. God is Truth

User avatar
jfro18
Posts: 1055
Joined: Mon Apr 23, 2018 8:41 pm

Re: Need to vent, has nothing to do with Mormonism

Post by jfro18 » Mon Mar 11, 2019 5:37 pm

Just read the latest update and all I can say is that my heart goes out to you and your family. I hope the doctors are right and he can make a recovery -- my mom has been given a death sentence a few times the last 3-4 years and is still going (not great but certainly better than they thought), so I hope your brother can beat the odds as well.

User avatar
glass shelf
Posts: 200
Joined: Mon Oct 17, 2016 6:27 pm

Re: Need to vent, has nothing to do with Mormonism

Post by glass shelf » Tue Mar 12, 2019 9:58 am

These decisions are so hard. Your recent update definitely muddies the waters.

It's difficult for me to see "life" as being attached to machines and showing no reactions to the outside world. It's definitely not something that I would ever choose for myself or a burden that I'd like to place on my family. (I've seen these situations first hand professionally when these patients move to LTC.)

I'm in the "don't keep me alive in a vegetative state from which there's limited chance I will recover and pass along any organs while they're useful to others" camp for sure. Cremate me after they're done, and talk about how awesome I was over tacos.

These decisions get so emotional and with so many people involved. It's challenging for sure.

User avatar
IT_Veteran
Posts: 549
Joined: Wed Feb 21, 2018 2:36 pm
Location: California

Re: Need to vent, has nothing to do with Mormonism

Post by IT_Veteran » Tue Mar 12, 2019 10:42 pm

I’m so sorry alas. This is precisely why I have a living will. Here’s hoping that he can pass in peace.

User avatar
alas
Posts: 1160
Joined: Mon Oct 17, 2016 2:10 pm

Re: Need to vent, has nothing to do with Mormonism

Post by alas » Wed Mar 13, 2019 9:03 am

He is still no closer to actually waking up. But he has developed pneumonia which is common with people who are on respirators. I get my reports of what is going on through the family, and they insist, that when they *hold his eye open* that he makes eye contact and tracks who is speaking. The nurses who have seen this are not impressed, but his wife “knows” he is in there. I am not sure if I believe that he is actually responding to the family, or if it is like Terry Schrivo (sp?) and the family sees what they want to see. He doesn’t respond to pain, why do they think he responds to their voice?

DH and I have obligations here for the next little while, but then I want to go to Ogden to see him.

I used to help with a woman who had brain damage from a car accident. She had no conscious control over any kind of movement, but she laughed at jokes, then choked because she couldn’t control her breathing and swallowing. And she got angry when her mother bad mouthed her husband who abandoned her after the accident. She reacted to what we talked about as we exercised her body and we had to keep it light or she would tense up and then it was painful to her to work against her body tension. She couldn’t even control her eyes to blink answers or track who was talking. But she was in there. I don’t know what that has to do with anything.

User avatar
Random
Posts: 729
Joined: Sun Feb 19, 2017 8:44 pm

Re: Need to vent, has nothing to do with Mormonism

Post by Random » Wed Mar 13, 2019 9:25 pm

That sounds so rough. <<hugs>> I hope it works out.

I would hate to be like that. I've told my children I don't want to be kept alive in a vegetative state. No "heroic measures" to keep me alive.
[They] which knew me from the beginning . . . would testify, that after the most straitest sect of our religion I lived a Pharisee.
Acts 26:5

User avatar
alas
Posts: 1160
Joined: Mon Oct 17, 2016 2:10 pm

Re: Update. Need to vent, has nothing to do with Mormonism

Post by alas » Sat Apr 06, 2019 10:04 pm

He is awake!

He really is awake!

Doctors can be wrong.

The thing that has been so hard is that up until just now, the doctors held onto the idea that he was never waking up. Even as he started moving more, responding to pain, coughing, and moving when he was uncomfortable. Just two days ago, one doctor looked at my sister in law and her hope against all odds, and his expression was that she had totally lost touch with reality. But she was right, and they were wrong. What has been hard the last couple of weeks was seeing him seemingly respond to us when we talked to him and not knowing if it was real, or if we were seeing what we wanted to see. I mean, how much credit do you give to an eye flicker? Or, his making eye contact as someone is holding his eye open, or what looks like a smile, or tears? The “experts” were dismissing such things, but it really did seem to me that he reacted to my voice, then when one of his daughters held his eye open, he found me with all the other people standing around his bed, when I was down at the foot of the bed, but he looked right at me and his mouth twitched like he was trying to talk. But there was nothing we could point out as “he is responding” just kind of it really looks like he is responding. But he has a voice thing so he can talk with the tracheotomy, and he named his daughters and responded to “I love you” by saying, “I love you too.”

My niece called earlier, and was so excited that I worried she was going to crash her car on the way in to see him. They put up a video of him talking, and it is real. He is awake.

Post Reply

Who is online

Users browsing this forum: No registered users and 3 guests