this post was submitted on 02 Nov 2023
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I'll bite. I had a brother with special needs pass away a year ago next week. He was born with cerebral palsy, was blind, nonverbal, totally dependent on caretakers (myself, my siblings and mother, his nurses) for literally everything since he didn't have functionally-independent motor control. We were told he'd live to 10, and he lived to 29; he was a bundle of joy and loved going out when he could. People would stare and kids would ask questions, but we loved sharing his story and my brother liked when people were curious about it.
But, his health started declining in 2014. He had several close calls, and we told doctors each time to try their best with the circumstances they were given. On more than one occasion, his nurses or our mother would actually be with the doctors during hospital stays to assist with him since he was case they didn't have much experience in and didn't want to make his issues worse. That said, he had a DNR (Do Not Resuscitate) since he had a trache, and was brittle enough to die from chest compressions.
I prepped for my brother's death countless times over 8 years. We all did. When he passed, we were so obviously distraught. But we were also relieved, in a way, that he wasn't in pain anymore in the end. We let out our emotions that had been stored for those years, and the grieving process is still continuing. We all put our lives on hold to help him, and he just became our lives; our goal simply was to make him comfortable and let him know he was loved, knowing we couldn't realistically do more. We spent years watching him in pain, watching him gradually lose his fervor and personality.
If you read this far, thank you. Not really sure what else to say, I just want to share this since it's occupied my mind a lot.
TLDR; Preparing for the worst outcomes, coupled with grief, over prolonged periods of time really disrupt your emotions and outlooks. Needless to say, my family became stronger proponents of state-assisted suicide after this experience. It couldn't be granted to my brother, but maybe we can help people in the future that coupd really use it. People understand, but not nearly as many are truly empathetic because they can't be - they've never been through a similar experience. I simply ask that people try to be sympathetic rather than to pass judgement on others.
The one cause that I'd champion over all others is the right to have access to assisted suicide.
It's really a travesty how we tend to hide just how grisly dying (and in some cases living) can be, and how those who most go through it inherently lose their voices to advocate for others not suffering the same drawn out fate.
I'm sorry you had to watch as it dragged out.
My SO is a doctor and the cases that most upset them are not the healthy patients that die, but helplessly watching the unhealthy patients that are forced to drag on living because of various factors.
We're getting much better at unnaturally prolonging life, and while that's a good thing in some cases where it can change outcomes for the better, there's a very dark side of it as well that's gradually getting worse.
Know that it's not a topic that only you are thinking about, even if it's unfortunately a topic that is too rarely discussed in public.
I can't relate nor comprehend your loss. You are so thoughtful and brave to put this out there. Sending lots of love your way.
I'm deeply sorry for your loss. I am a hospital chaplain, so I have been with families as their loved ones have died in settings like this. If you want to talk to someone, I'm here for you.
I understand the weird feeling of relief when someone dies. I know that sounds terrible. My situation was not yours, so I'm not directly comparing. One of my parents had long, slow cancer. Watching them waste away, choosing to fight a symptom or not, was draining and difficult. In one sense, I enjoyed all of those final moments and would give anything to have more. I miss them dearly. However, I'm glad they're not suffering. It was difficult at the end. Their quality of life was not good.
Yeah my dad smoked a pack a day his entire life and had started getting a lot of issues with his lungs and health in general. He died of a heart attack not so long ago and while I did grieve him I still feel that's the best way he could have died
If only it hadn't happened on my sister's birthday but that's life for you