Part 2: if you were the parent, would you feel it would be ethical to keep them alive?
No. My main reason for wanting to live as is is so I can improve the world for others, and in that situation I’d just be a drain on society, and also suffering.
If I was a parent I would not make decisions for my child, assuming they are capable of making decisions, it’s not my choice whether they should live or die. By the same token, I wouldn’t bring then into the world in the first place, however, as they cannot provide consent to live.
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Nope. Even if a cure was on a cure was on the horizon. Its tough when its someone else though. My father had alzheimers. Initially it was like well he like to walk around and eat and sing. There is some quality of life. Eventually though he could not swallow whole food and was in a wheelchair when not in bed and his hands had curled up. It was clear that if it were I in that condition I would like a nice does of barbituates.
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Im not to worried about the child thing other than my life is basically pointless at that point and I honestly don’t see much of a point of the cost of my being alive at that point. The bigger thing to me is actually the physical. Not being able to feed yourself or eat solid food, not being able to get around by myself. The whole fingers and toes curling up which moves to arms and legs. The thing with the mental state is if you had full cognition and adequate support. Like hawking. Then you still have quality of life in terms of mental stimulation. If your mind is gone but your still good physically then there is a sorta quality of life. You can have some childlike happiness. But man once both go beyond a certain point (and the mental really goes first) its just omg bring the sweet relief.
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Its the worst thing I ever witnessed. Curiously though it was someone who belonged to a faith that had a lot of ritual and that stuff stuck with them the longest since it was so ingrained over the lifetime. That actually in a way makes it sadder. Im now thinking about losing everything that makes me me except for some rote behaviors I performed again and again.
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As someone with half that list of health issues. I struggle everyday. Most people even family do not care they can leave, go eat, live life. I cannot. Nobody cares until it’s them. They will never understand, have the compassion, empathy, respect to even try to help you, not even to clean up after themselves for things that make you sick, (gluten issues and they leaves pizza crumbs and greasy pans all over counters and stove). Plenty of sorries to help their emotions feel better though. Nothing for you though. Not money to help with medical things. Not care to keep themselves in order. People do the bare minimum and the world is fine with it.
I don’t want to live like that, not as a parent, myself, or my family members. Shits hard. I don’t want to die or be dead so I’m not looking to OFF myself but fuck its hard to get through each day. It takes a solid, hard headed, self disciplined, never give up attitude to live like this. Yet you still fail to thrive and have any chance of health.
I am sorry you don’t have the support you deserve, even from family. That must make a difficult life even more so.
My wife has cerebral palsy and in the last 5 years has developed chronic back pain that has taken away what little mobility and dignity she had.
It has been upsetting to watch her decline. Doctors seemingly unable to alleviate her symptoms, but we keep trying.
I am head over heals in love with her. The disability doesn’t change that. I am there for her every need, day or night. We appreciate each other and spend all our time together. I wish you could find someone to do the same for you.
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