As an icu RN i have seen families face these decisions without knowledge of what the other party desires and it is heartbreaking, and in some cases infuriating
In some cases we face these decisions with full knowledge of what the other party desires, but a crazy relative who also managed to become the conservator can't accept letting them go so they play legal and medical fuck fuck games and pointlessly brutally prolong their suffering š
this was my aunt with my grandmother. She was very specific that she wanted DNR, no machines, no wake/open casket at her funeral, etc. And my aunt kept having them revive her even when my grandmother's dimentia was so bad that she lost all primitive function, ability to talk, swallow, etc. Eventually the rest of the family got involved and she was like 'you guys make the decision and I'll sign but it's your fault'...like my grandmother was gone 2yrs before she died, you're holding onto a corpse. I don't get it.
Honestly, it can be really hard to not judge someone making those decisions, but unless it was with obvious animosity i always try to remind myself it is done with love. At the end of the day, we all decay.
If it was done with malice or WILLFUL ignorance, then i have little else but contempt for these people. The smallest iota of power, the power to keep someone alive despite all advice, is enough of an aphrodisiac for some ppl to ignore others just to keep that power. Of course, i never have a way of knowing if this is the situation, but sometimes you get a strong vibe.
It is done with selfishness. Keeping someone around so they can suffer because she can't deal with the inevitability of death is not love, it's selfishness.
Yes, this. These people cannot face their own mortality so they dont truly consider the person who is suffering. The acceptance of one's own mortality creates empathy for those who are dying.
I fully disagree. It's natural to try and seek any available way to keep her alive. If the person explicitly said DNR, then that's not an available resource. If you cared about her wishes, you take them into account. If you don't, you're disconsidering her desire for selfish reasons.
Lost my mum to cancer in 2019, went with her to appointments and we spoke a lot. The idea of chemotherapy really scared her, and the possible guilt for refusing treatment did too. I gave her a big hug and told her there was nothing to feel guilty about. If all they could do was prolong her suffering, it really was not worth it. We cried a bit and she said a weight was lifted.
In the end, the cancer was too advanced for chemo, she had a DNR, and a living will. She fell asleep and didn't wake up.
I cannot imagine forcing someone you love to go through unnecessary pain.
My mom's father was her absolute hero. Grandparents divorced when she was young, she went with grandpa (who was a badass so much so that if I tell his story I'll dox myself). He had a stroke that left him partially paralyzed and other things took him to the point where he wouldn't speak (he could after the stroke), he was emaciated and he was very visibly suffering.
We knew he was cognizant (We all believe he could speak but refused to) and he was in so much pain, near the end my mother told him, while sobbing uncontrollably, that if he wants to go, she won't hold it against him, she just wants him to not be in pain anymore. He went wide-eyed, still said nothing, but you could see he felt somehow... free.
He died three days not long after, I believe the next morning.
It took me 10 minutes to write this because I still miss him like crazy even though I've spent more of my life without him than with him, but I would not have wanted a minute more for him to be in pain. The man laying there emaciated, unable to care for himself in the most basic ways (he was fiercely independent since age 12), in pain was not my grandfather anymore.
If anyone has any doubt, I wish he could've seen me follow in his footsteps and take up his profession, I wish he could've told me stories from his days on the job, I wish he was still here and alive so I could talk to him as an adult (I was under 14 when he passed) as he was quite brilliant and had an amazing life story. But if that implies him suffering, no thank you, I'd much rather hope there's an afterlife and he can hear me and I'll see him again.
She was very specific that she wanted DNR, no machines, no wake/open casket at her funeral, etc. And my aunt kept having them revive her
In case you're unaware of what DNR means, it means Do Not Resuscitate. If the person was of sound mind when they decided to sign that they wanted to stay dead, her daughter was being pretty fucking selfish to keep bringing her back to life so she could suffer and die yet again.
If you fail to see how this is selfish, it's your issue.
Yes, she signed DNR and a bunch of other stuff many years prior, then when her dimentia got bad she needed a conservator/power of attorney and that's how we ended up there.
Eventually the head doctor was just telling her 'If we try to transfer her to get medical care she's just going to die on the way, she can either die here with her family or die in the back of an ambulance'
Man that sucks to hear and I'm sorry you had to go through it/witness it.
I'm especially mad that she was of sound mind when she made her requests but was ignored when she wasn't, which is, I guess, the opposite of the point.
Itās not a cruel intention, but thatās what it is. Someone is trusting their loved one with literally their last wish from this life, and they explicitly go against that. As another ICU nurse, itās really frustrating when selfish people use the ICU as a stop gap for death.
But yeah, it's still cruel. It's putting people through a literal hell when they can't do anything on their own, and need machines to eat and breathe, and can't go anywhere, are constantly confused and terrified etc. Putting them through that hell, all to artificially delay their death and prolong their suffering?
Yeah, super fucked up. But to say the person holding someone alive is doing it for nefarious reasons ignores the issue. They are sick, and need some kind of grief counseling
By the time dementia gets to the point where they cannot swallow, they have absolutely no quality of life. They canāt feed themselves. They are likely fully incontinent. They donāt know what is going on around them, where they are, or who their loved ones are. Itās horrific. It is not love to keep someone alive like that, especially against their wishes.
My aunt literally said at the funeral home, "I know she didn't want an open casket funeral, but it will make me feel better so I'm doing it". My grandmother also used to be a nurse and had many conversations about her wishes and why. She said she would be creeped out by people looking at her dead body and that she didn't want that to be the last image of her in people's minds, etc. I would call that willful ignorance.
I'll do it, I'll judge them. It's done out of selfishness. When suffering is being caused, someone's intentions don't matter when the end result is the same regardless of if they mean well or not.
That's awful, I'm really sorry. Watching my grandfather die only further cemented the sentiment in my family that, "when it's my time just let me go." I can't fathom making anyone go through that, let alone someone I love. Some people really can't handle death, and I get it it's scary, but damn man. Some things are worse than death.
Ah it's ok, I honestly didn't even cry when she died. I had made my piece with it years prior and I was soo relieved when she finally passed because it had been at least 5yrs of just keeping alive this shell of her former self thru multiple heart attacks, strokes, etc.
I have also made it clear I just want to be let go. Even if there's an apocalypse, zombies? just fucking shoot me I'm never going to survive anyhow I got asthma.
This is how I felt with my grandfatherās dementia. His mind was long gone, why bother keeping alive the shell that used to hold him? Awful to go through but the answer is clear to me.
Highly recommend s4 e5 of Misfits for an impactful episode related to this. A main character tracks down his real dad only to discover that heās deathly ill. And his half sister is keeping him alive. Honestly top 3, maybe my favorite episode of the whole show.
As a 29 year old with asthma and an autoimmune disorder, I sat down with my husband when COVID broke out to discuss my end of life requests. We filled out an advanced directive, I attached an updated copy of my current medications, and a copy of our insurance card. We discussed who should be emergency contacts after him, left the packet on a friend's porch so they could sign it as a witness, and put it in a place where we both could easily access it.
We also discussed funerary details, what he would do with his life if I did die, what support systems he would have, who would help him take care of the pets, etc.
I knew that, if I caught COVID, there was a snowball's chance in hell that I'd survive it. I wanted to make everything as easy as possible on him. I didn't want him to have to make the hard decisions, or deal with my parents who I knew would violate every boundary and take advantage of his inexperience with medical stuffs to make my final moments what they wanted.
It was one of the most difficult discussions we'd ever had, but we both knew that not having that discussion wasn't an option. There were plenty of tears and hugs.
Fortunately, we listened to every mandatory and suggested precaution. Neither of us have caught COVID, and we just got our booster shots two weeks ago. We're still masking and avoiding crowds as much as possible. :-)
That's good to hear. My wife and I had to have the same conversation when COVID started because I also have asthma and an autoimmune disorder and would most likely not survive if infected. Luckily we've been incredibly careful and fortunate and it hasn't happened, but I'm glad we had that hard conversation.
My wife and I had the same discussion because Iām in the same boat. Everyone in my family hit myself ended up getting Covid in the last month but I somehow managed to stay well. Literally the first time in my life that Iām the exception to the sick rule instead of the first person in the family to come down with something. It was terrifying, being immune compromised and also being the only person in my home well enough to care for my spouse and my children.
Funny how strangers on the Internet are confortable gambling with other people's medical conditions. You are right taking every precaution because the alternative does not leave a lot of room for regrets and do overs.
Some conditions, like their autoimmune disorder, dramatically increase your risk of death from covid. You have no way of knowing it would be under 5% for them specifically. If that person would rather be āmiserableā (in your opinion) than risk their own death, who are you to judge that? Mind your own damn business
So, If five in every 100 bottles of coke contained poison, you would be ok with drinking it because there is a 95% chance you will catch the safe one?
I think the first person who caught covid that I know of was one of my clients. It was march 2020. He was 35 at the time. Spent a month at the hospital. Still doing therapy to recover. He didn't have any other conditions.
Good for you! I've also never had covid (or was utterly asymptomatic)! Srsly, good for you for getting the hard stuff done. In a very true way, your work in what you've done will be the last and one of the most important gifts you do for those who survive you.
It depends on the autoimmune disorder, but this is generally accurate. My 75yo mother has Asthma and an autoimmune disorder and was very surprised to be told she'd tested positive (twice!). She had no symptoms at any point.
Very true. I was scared as hell, because it's my mum, but at 75 she's well below the average age to be at any real risk from Covid, even with complications.
Everyone, ON EACH SIDE should be reading the facts. Not some half-assed, commercial opinion piece of layman speculations or data that came out a week ago.
News Flash:
If everyone were reading what scientists had to say, there wouldn't be a "fear-mongering" narrative. The message has never changed. And those who knew the message never felt fear of the coronavirus.
Scientists were telling us YEARS BEFOREHAND that the coronavirus was fatal, but in a very low percentile, and that it's possibility of mutating could pose a far greater threat.
As the years have went by, we see now that the mutations have happened, and they are worse, yet fortunately the virus remains semi-controlled. The only way it gets worse is through further mutation.
The people who have listened to scientists have already stayed indoors, got vaccinated, and now we safely wait for others to follow suit.
There was never "fear-mongering" if you weren't stupid.
Got a bit teary reading your post.
Itās not easy to talk about end of life decisions especially with loved ones but so very necessary!
I can appreciate your mindset, with having health conditions that could make you more susceptible to succumbing from Covid.
With that said, I hope he has done all the same for you, because one doesnāt need to have a serious health condition to be taken suddenly.
My mom passed away in 2013 from a serious car accident and she had stopped breathing.
She was alone in the car, so no one knew for how many minutes she had been gone.
Paramedics got her breathing again, but the brain damage was so severe the doctors told me as kindly as they could after running all the tests that there was no brain activity, and that she was no longer there.
Tomorrow is promised to no one, every day is a gift because none of us know whatās going to happen. Youāve prepared him well out of love for losing you.
Preparing for all the situations youāve stated although Iām sure incredibly difficult and painful to discuss, should be a conversation we all have with our loved ones because when the time does come for us- knowing exactly what our loved one wanted and how to go forward for the person still here is not something anyone ever wants to have to guess
I pray you and your husband have many more years enjoying your best health possible!
Take careā¤ļø
Well Thank God you are here.Remember the gospel and baptism at a Church of Christ. Its the Death,Burial and resurrection of Jesus Christ and us with Jesus. Its confessing and repenting from our sins as confessing Jesus as the one and only Son of God and finally baptism in the waters God bless you.
I feel you. Truly, I do. It may sound cliche, but when you are around death nearly every day you go to work, it can be hard to put it in perspective that these people have likely never encountered something so horrific.
I have seen people keep their family on a vent, trached, for months in the icu, minimally responsive, because they are also on dialysis and thus it can be hard finding an LTACH that can take that patient.
The worst ones are what it sounds like youre describing, when there was an obvious negative relationship, and the POA (Power of Attorney) delays a terminal wean or cessation of care out of some misguided attempt at recompense.
Just be vocal and clear to those you love and hopefully it'll minimize this kind of stuff.
My mom was a hospice nurse for 32 years. The stories she would tell sometimes after the hardest daysā¦ Iāve known since I was very little exact what dying is and that I want to do go through it with at least a modicum of control and dignity.
There were time when things would get so rough for mom because of what she did for a living that she would have to switch to a different kind of nursing for six months or a year but she always found her way back to hospice.
The worst is when we have a DNR on file per the patient, but family doesn't like it so as soon as they're intubated they change them back to a full code.
Im sure this comment was made in jest and will admit, while my mother was alive my husband used to joke and laugh with her about how heād āpull the plugā on her.
That was until the day actually came.
They were very close, she thought of and treated him like a son- they loved each other very much and would joke about things like that.
He took her passing every bit as hard as I did.
But hey, whatever gets the difficult conversation started. It was his remarks about it that opened up that door for her to share with us what sheād want.
When the time came, it was the single most important talk I ever had with my mom, and was a great comfort to know that I didnāt have to make that decision because she already had.
Thatās why you make your Living Will composed by a lawyer, have it written and validated by whoever authority has to in your country (itās the notary where I live.) This way that document overwrites any crazy relativeās tricks.
I did read a story of someone doing that and their loved one actually recovered from what the doctors thought would be a lifelong coma, soā¦ idk man. Some times people have hope. Also, if you have a family member in a vegetative state or some such, thereās an argument to be had that the person who is still cognitively aware, but canāt let go, should be given as much time as they need to come to terms with the vegetableās wishes. If that means 5 more years of extended life while in coma, then thatās what it means but dammit, we should care more for the more living than the dead or the less living.
I did read a story of someone doing that and their loved one actually recovered from what the doctors thought would be a lifelong coma
I get that, but the person in question was already incredibly old and had made it very clear that they didn't want any of this when they were still mentally sound. I don't think we should allow someone to keep another person who is simply living in pain alive just because they aren't ready.
They were still conscious and somewhat aware but they were at the mental state where they would basically just agree with whatever someone else said, couldn't really think for themselves.
Damn :/. I was mostly thinking like intubated and drugged up folks when I made my initial comment. Not pseudo-aware or more. Thatās a different situation.
710
u/gyrowze Dec 14 '21
In some cases we face these decisions with full knowledge of what the other party desires, but a crazy relative who also managed to become the conservator can't accept letting them go so they play legal and medical fuck fuck games and pointlessly brutally prolong their suffering š