Question from an Aspie child to the Parents

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Having to watch your child die is probably most parent's worst nightmare. I truly find the thought of it unfathomable.

For me, personally, the worst death is to die alone or to die afraid. Of all of the people who I have known who have passed, the only ones that haunt me are the ones who I think were not at peace the moment they died...my friend who drowned, my friend who died in the Gulf War, etc. Even though years have passed, I can be overcome with horrific feelings when I think of their final moments. Those deaths can still make me cry. But I have had people closer to me die, who died peaceful deaths (not alone, not afraid), and who died more recently, but I do not feel as bad when I think of them. I remember the happy times first and foremost. If you were to say the name of someone who I fear did not die at peace, the first feeling I get is a feeling of heartache and panic. It takes me awhile to even remember the good times. If you were to say the name of someone who died at peace, the first feeling I get is warmth and happiness because they very first thing that comes to my mind is how much I loved them and all the good times we had.

If my kid had a terminal illness and chose not to tell me, I would never get over it, because for the rest of my life, I would wonder if they were at peace when they died. I would feel horrible wondering if they felt alone or afraid. I don't think I would ever get passed it. There would be no closure, only heartbreaking questions that I would never have an answer for. If they told me, and allowed me to be there for/with them, I would eventually move to the place where the first thing I felt at hearing their name would be warmth and happiness. If they denied me that closure, the first thing I felt would always be heartache and panic.

Instead of saving your parents from the pain of watching their kid die, you could be sentencing them to a life of agony that would never go away.

1) That's a strange hypothetical to bring up in conversation, so your brother is probably now concerned that you actually ARE terminally ill, regardless of whether you assured him otherwise.

2) I think it would be cruel of you to never tell your parents at all. I think you should at least tell them near the end, so that they can have a chance to say goodbye. For some people, having "closure" is extremely important in helping them deal with grief. You shouldn't deny them that.

I'm a child who lives half way around the world from my aging parents and I'm always concerned that I'm going to get a call out of the blue that someone dropped dead. I said to my mother before I left nearly six years ago, "If you're going to die, I need a week's notice". I know that's impossible, but I was serious. Thing is, it may not seem like a big deal to you in a hypothetical situation, but having the ability to say goodbye, or learn before being shocked by the event that death is imminent can allow some people to process it a little better. As it stands, I have crappy health and will probably live a long life - that's how it usually goes.

More importantly, as a parent I would wonder what I had done wrong that made my kid hide something so important from me. It would feel like a betrayal: somebody I love purposely hid critical information from me.

When you really care about somebody, you don't just care about the good things: you care about everything. You want to share in everything, the bad and the good (made explicit in marriage vows, but really applicable to any deep relationship.) If you hide really bad scary stuff from your loved ones, you are essentially telling them that your relationship was not as deep as they thought. It implies you don't trust them.

If my child were terminally ill, or suicidal, or otherwise in pain - I want to know. I want to share in their experience, to at the very least be that person that they tell. If I'm not able to do anything about it, so be it, but to suddenly find out that my child was suffering and didn't tell me...that would hurt.

I think this is an interesting question.

I thought about this sort of thing a lot, because of watching my mom die of cancer. I was not there as much as I wanted to be, because of travel distance, but I was able to see her at various stages of her illness and then was with her daily until the end for about the last 2 weeks of her life. It was horrible. The entire process, from the moment of her diagnosis, was horrible, and of course particularly so once it became clear that it was terminal and there wasn't going to be any "11th-hour miracle". Knowing, for such a long time, that we were going to lose her, and that there was nothing we could do about it, was horrible. So much time to think about it. So much time to "get used to it", without ever getting used to it. I'm still not used to it, and she's been gone for 8 years, and I probably will never be used to it. So I would think about it, about what would be gained or lost if, say, she had instead been taken instantly from me in a car accident. Sure there are some definite "pros", both for me and for her. But the pros would mostly be on HER side (no prolonged emotional or physical pain, loss of function, loss of dignity, fear of death, and at the very end, a LOT of pain.) On my side, the pros seem superficial at best, and quite selfish. To lose her would be horrible either way, and what I gained by having the chance to see her and say "goodbye" in advance, as much as that is possible, more than makes up for the pain I would have avoided with an instant death, of not seeing her in her ill condition, or suffering the pre-knowledge of her certain and painful death. Seeing her ill was the least of the lasting pain. The regrets are the worst. And even with all that time to prepare, I *still* have many regrets which continue to torture me. There is NEVER enough time for all the "unsaid" things.

All that said, I also want to comment from the point-of-view of a parent and how I would feel if my child wanted to die alone. Like many others have said, my instinct would be to RUSH to my child and be with him, even if there were no *practical* reason for me to do so. I would just have a NEED to be with my child. But, if my child called me and told me that he was dying, but that he wanted to die alone, I would do my best to respect that wish. Sometimes I've thought about the dignity of a terminally ill person going off into the woods, for example, to die alone. There is something very appealing about that, compared to the indignity of dying in a horrible hospital or hospice bed with all kinds of people monitoring your decline. If my child called me and said "Mom I'm going off into the woods to die," I would respect that and I'd honor the decision. And it would hurt because I'd *still* want to go to him and hold him, but I'd understand and on some level admire it.

But that hypothetical situation is quite different from finding out AFTER the fact. What you do in that situation is take away their right to even KNOW. Their right to know your decision, and the feeling that you trust them enough to respect it.

I guess I have to wonder, what would be the real motivation? In this hypothetical situation, are you truly trying to spare THEM (not seeing you ill), or is it more about your own dignity (not wanting to be seen in that condition)? I fully understand the desire to die alone. What I don't understand, is keeping it a secret. Unless keeping it a secret would be the only possible way to achieve that (being able to do it alone).

It would not be doing your parents a favor to not tell them. In fact, people cope better with a death they saw coming than an unexpected death, so by not telling them if you're terminally ill, you'll make their work of grieving more difficult.

http://www.fss.uu.nl/pubs/pgmvanderheijden/78.Couplesatriskfollowingthedeathoftheirchild.pdf
"the more the parents expected the loss, the less grief they experienced."

You tell them for them - so that the grieving process can actually begin and they can get to the healing process more quickly. Yes, it would be a terrible experience, but it's also one that is fundamental to life. As a mother, I would want to bear witness and support you, and know that you were taken care of and had the best care.