Help 17-yo Son’s Meltdown

[Stan]

am really sorry. How bad is your ALS progressing? I don't know much about the disease. Is it progressing slowly? Can you maybe wait unt he goes to college and get settled in college?

Google is your friend - research something about a disease before making a comment on it as it could seriously upset someone if you give an opinion and have no knowledge of the condition and the timelines

 

[wendydong1]

"My ability to be able to actually hold/drink the N will cease in probably 2-3 months, so my window of being able to help myself pass peacefully is closing."

Has your actual progression match the doctor's diagnosis? Sometimes the actual progression is slower than the prediction

 

[Jolene40]

Someone on a pro choice website using words like cowardice and weakness - particularly in the face of ALS - sounds highly suspect to me

 

[restingspot]

This situation is especially complex, and my heart goes out to you. ALS is no joke, infact it's a disgusting and cruel disease. You and only you know your son best, we are just internet outsiders with only a sliver of knowledge of what you experience in your day to day life.

That being said, imho, I would NOT delay your ctb date. Death by N compared to death by ALS is a no-brainer, and being around longer than that without your explicit consent is just...not desireable. But if you ctb, this might distress your son to the breaking point and he might ctb as well. It'll definitely negatively alter the rest of his life. You have a situation where there's nothing that will iron itself out as smoothly as you want to...

One suggestion I have is to make a video letter stating your thoughts about your ctb and give him advice and reassurance. You love your son deeply and he knows this too.

 

[Blackjack]

Your death will be considered one from natural causes literally. It's not an accidental death, I hate to argue semantics. It's pointless.

Then stop.

I am really sorry. How bad is your ALS progressing? I don't know much about the disease. Is it progressing slowly? Can you maybe wait unt he goes to college and get settled in college?

My son just started his Jr. year of HS. I will die of ALS before he starts college.

 

[Stan]

Dear Blackjack

We both know that we have had some private conversations and you did your best with a huge crowbar to try and extract what I would do in this situation. I write this hopefully without passion or emotion, but to give you a potential of what is going to happen to you, and god knows, you will probably able to tell me more and worse. I was going to send this privately but thought I'd go 'all in' and go public with the hope it gives some balance to the situation. The way you positioned it, nobody could read anything other than your son, I think for a lot of people they forgot you in the equation or haven't looked up ALS and what the future is for you.

You decide to cancel cbt for the sake of your son and what he is going through. He will still be in a mood and mooch around because he has broken up with his first love, which happened not to be a girl but basketball. You do your best in your current condition to rally him around but its not going to work and get the "you don't understand Mum, nobody does" which is the main-staple of all teenagers comes to front. You can't chase him around the house as he storms away as you are in a wheelchair or bed bound. You wait a period of time hoping he calms down so you can give motherly advice. Time moves on and ALS continues its march. In the meantime, you forget that he knows the inevitable regarding you and that's way bigger in his mind than the basketball. Just sheer shit timing that the two coincided. You eventually lose the ability to communicate so there is no soothing him now. Your skin becomes a monument of what you once were, however, new memories are being made by all those around you as you deteriorate which are night and day to what you once were.

When you are fully taken by ALS you are going to be trapped in your body, the dignity of doing all the personal things for yourself are gone. You can't make decisions for yourself on what can entertain your mind because you would have lost all capability of even telling people to change the channel on the TV that will be plonked in front of you. Boredom and frustration are your hourly companions. When the door opens to your room when you get a visit from your immediate family. you will notice that the door handle does not turn quickly. Its because the person on the other side of that door is mustering courage to come and see you the way you are now. So being a martyr may have given you a minutes/hours/days bit of peace, but actually its possible you have done more damage in other areas, such as his image of you as his strong and caring mother being masked by what you have become. The woman who kissed his knee better when he was small becomes a husk that he talks at and not to.

You came here for a reason, and many would do what you are planning with your condition if they had the easy choice or was given by an option through a doctor. I can't think that were wouldn't be many here who would love to take the disease from you so you could continue, but we can't.

So here is my question to you Blackjack as you posed a pretty damn significant one to the forum (and I say that with all the respect I have for you). Do you go out as Blackjack knowing that only you can do the mother stuff but you leave him in the good hands of his father, brother and whatever else is a support mechanism? Or do you stay the course a live the nightmare you know is coming without actually succeeding in helping your son?

I know that when I think of my mother now, its actually the bad bits that come to mind first relating to her illness, I need to go through them for any of the good stuff. Because it is shocking to watch, it gets to the very core of you, leaves a stain and it doesn't wash away.

I write this with angst in my heart for as a parent I can appreciate leaving, especially when an event is going on is hard. I have to write this in a cold way to get my point across and I can't apologise for that. If I put ribbons and tinsel on it I think I would have diluted my message.

I hope you know I write this with all the respect I have for you Blackjack. You are an amazing woman, mother, wife and friend. Whatever you do, we are here as long as you have us.

 

[Blackjack]

I know i voted for yes, but you should go. death is always hard. There is no proper moment for it. I think yuo just searching for an excuse for staying alive. Do it. He might break up, but he might also get tougher.

Death of my father made me really tough. I wish, your kid gonna be as tough as i was. Leave him a note. You also might write him an emails with a dates of his birthday for the next years. Gmail.com will send them with the date of your choice. write him 13 emails, for the next 13 years each one for the birthday. Until he end up. 30 years. And leave : ) i think that would be beautifull : )

like this post if you like the idea!

Did you actually just type that you think I'm just searching for an excuse to stay alive? What a stupid thing to say. Which makes everything else you have to say irrelevant.

Dear Blackjack

We both know that we have had some private conversations and you did your best with a huge crowbar to try and extract what I would do in this situation. I write this hopefully without passion or emotion, but to give you a potential of what is going to happen to you, and god knows, you will probably able to tell me more and worse. I was going to send this privately but thought I'd go 'all in' and go public with the hope it gives some balance to the situation. The way you positioned it, nobody could read anything other than your son, I think for a lot of people they forgot you in the equation or haven't looked up ALS and what the future is for you.

You decide to cancel cbt for the sake of your son and what he is going through. He will still be in a mood and mooch around because he has broken up with his first love, which happened not to be a girl but basketball. You do your best in your current condition to rally him around but its not going to work and get the "you don't understand Mum, nobody does" which is the main-staple of all teenagers comes to front. You can't chase him around the house as he storms away as you are in a wheelchair or bed bound. You wait a period of time hoping he calms down so you can give motherly advice. Time moves on and ALS continues its march. In the meantime, you forget that he knows the inevitable regarding you and that's way bigger in his mind than the basketball. Just sheer shit timing that the two coincided. You eventually lose the ability to communicate so there is no soothing him now. Your skin becomes a monument of what you once were, however, new memories are being made by all those around you as you deteriorate which are night and day to what you once were.

When you are fully taken by ALS you are going to be trapped in your body, the dignity of doing all the personal things for yourself are gone. You can't make decisions for yourself on what can entertain your mind because you would have lost all capability of even telling people to change the channel on the TV that will be plonked in front of you. Boredom and frustration are your hourly companions. When the door opens to your room when you get a visit from your immediate family. you will notice that the door handle does not turn quickly. Its because the person on the other side of that door is mustering courage to come and see you the way you are now. So being a martyr may have given you a minutes/hours/days bit of peace, but actually its possible you have done more damage in other areas, such as his image of you as his strong and caring mother being masked by what you have become. The woman who kissed his knee better when he was small becomes a husk that he talks at and not to.

You came here for a reason, and many would do what you are planning with your condition if they had the easy choice or was given by an option through a doctor. I can't think that were wouldn't be many here who would love to take the disease from you so you could continue, but we can't.

So here is my question to you Blackjack as you posed a pretty damn significant one to the forum (and I say that with all the respect I have for you). Do you go out as Blackjack knowing that only you can do the mother stuff but you leave him in the good hands of his father, brother and whatever else is a support mechanism, or do you stay for the duration with limited to no capacity to help? Or do you stay the course a live the nightmare you know is coming without actually succeeding in helping your son?

I know that when I think of my mother now, its actually the bad bits that come to mind first relating to her illness, I need to go through them for any of the good stuff. Because it is shocking to watch, it gets to the very core of you, leaves a stain and it doesn't wash away.

I write this with angst in my heart for as a parent I can appreciate leaving, especially when an event is going on is hard. I have to write this in a cold way to get my point across and I can't apologise for that. If I put ribbons and tinsel on it I think I would have diluted my message.

I hope you know I write this with all the respect I have for you Blackjack. You are an amazing woman, mother, wife and friend. Whatever you do, we are here as long as you have us.

Thank you for your profound & thoughtful insight. In no way am I offended or feel disrespected.

My decision will be based on whether I feel like I can temporarily minimize the immediate collateral damage to my son by delaying or altogether canceling my early exit plan. But, make no mistake, nobody knows better than me that whether I go now from N or in 6 months from ALS, there is no way my son will come out of this unscathed.

 

[GeorgeJL]

@Blackjack it seems like your under a lot of stress, I just wanted to wish you the best. And I think you'll make the right decision that is best for you and your family.

 

[Blackjack]

This situation is especially complex, and my heart goes out to you. ALS is no joke, infact it's a disgusting and cruel disease. You and only you know your son best, we are just internet outsiders with only a sliver of knowledge of what you experience in your day to day life.

That being said, imho, I would NOT delay your ctb date. Death by N compared to death by ALS is a no-brainer, and being around longer than that without your explicit consent is just...not desireable. But if you ctb, this might distress your son to the breaking point and he might ctb as well. It'll definitely negatively alter the rest of his life. You have a situation where there's nothing that will iron itself out as smoothly as you want to...

One suggestion I have is to make a video letter stating your thoughts about your ctb and give him advice and reassurance. You love your son deeply and he knows this too.

My family is not on board with my early exit, so the only way they will know I took my own life is if an autopsy is performed and suicide by N is revealed.

 

[Mud.]

@Blackjack it seems like your under a lot of stress, I just wanted to wish you the best. And I think you'll make the right decision that is best for you and your family.

I can only agree with this comment. What an awful situation.
I'm not even close to wise enough to give you any advice, but I wish you and your family all the best.

 

[Blackjack]

@Blackjack it seems like your under a lot of stress, I just wanted to wish you the best. And I think you'll make the right decision that is best for you and your family.

If it seems like I'm under a lot of stress, you're very astute.

"My ability to be able to actually hold/drink the N will cease in probably 2-3 months, so my window of being able to help myself pass peacefully is closing."

Has your actual progression match the doctor's diagnosis? Sometimes the actual progression is slower than the prediction

I know my progression better than any doctor.

 

[arelia]

I can't think of one thing to say to make any of this better, I truly, truly wish I could.
I like the idea of leaving your son a video, even if you're having problems speaking at the moment it would be something for him to treasure. One question I did have though is how you're going to hide the N bottle/packaging? if you want to disguise the method of your passing you'll need a way to hide that.

 

[Stan]

I can't think of one thing to say to make any of this better, I truly, truly wish I could.
I like the idea of leaving your son a video, even if you're having problems speaking at the moment it would be something for him to treasure. One question I did have though is how you're going to hide the N bottle/packaging? if you want to disguise the method of your passing you'll need a way to hide that.

Perhaps not for this thread, maybe ask her in private chat

 

[Blackjack]

I can't think of one thing to say to make any of this better, I truly, truly wish I could.
I like the idea of leaving your son a video, even if you're having problems speaking at the moment it would be something for him to treasure. One question I did have though is how you're going to hide the N bottle/packaging? if you want to disguise the method of your passing you'll need a way to hide that.

I made a video for my kids when I was still beautiful & able to speak coherently. Absolutely no reason/desire to document my current despicable condition, it's seared in to their minds forever I'm sure.

My N bottles will be disposed of well in advance of my taking it. Obviously I wouldn't leave them around to be discovered.

It's interesting how ill-prepared some of you seem to think I am for something as serious as this.

 

[arelia]

I don't think you're ill prepared at all - since you got your first diagnosis I'd say you've been planning this meticulously.

 

[Stan]

Someone on a pro choice website using words like cowardice and weakness - particularly in the face of ALS - sounds highly suspect to me

Look at their posts in their history, they are not hiding their true feelings very well

 

[Blackjack]

It was her decision to bring a sentient being into existence. She should live with that decision and take care of her son till her end. This woman sounds like a bad person

You're saying that I'm a bad person because I'm dying of a terminal disease and can't take care of my son? I can't take care of my son because I am immobile/bedridden 24/7 and unable to walk or talk. My only method of communication is typing/texting on my phone. If that makes me a bad person in your eyes, then you need serious help.

 

[Blackjack]

Here's a pro tip: Don't comment on posts you haven't bothered to read, regardless of whether you're illiterate.

 

[Stan]

It was her decision to bring a sentient being into existence. She should live with that decision and take care of her son till her end. This woman sounds like a bad person

WOW! just plain 'WOW!' I wouldn't know where to start without giving the moderators 500 reasons to ban me

 

[bea1974]

I'm sorry I dont quite understand. You said your 17 year old sons mother died and that you are his mother. I thought you were his father. And you said that you are dying and it can't be helped. So I was under the impression that you have some kind of deadly disease. Are you planning on killing yourself or are you dying of something? And are you his mom or dad?

She's the mother. You could just read the posts in this thread and then you'd not need to ask these questions.

It's not actually that complicated, although it is very sad.

No she has never claimed to be anybody's father.

*sigh*

 

[Blackjack]

1. 
   
2. 
   I'm sorry I didn't mean to aggravate you. I read the post. And then I read it again and understood and deleted my question. Sorry I asked questions. Sorry I'm breathing.

I did read the post. I'm sorry I'm such an ignorant moron that I didn't understand the complicated situation the first time I read it. So I read it a second time and now I understand. I'm sorry I ruffled your feathers and that I even faintly got on someone's nerves. May God forgive me.

You seem to have a knack for writing "I don't understand" on people's posts (not just mine.) Maybe don't comment on something unless/until you understand the situation or circumstances. Maybe read through not only the original post, but all the follow on comments/responses so that you get the big picture before chiming in. It's just simple common courtesy.


**Update**

I think I'm going to take it week by week for now. But I don't think there's any way I can abandon my N plans altogether because I'm too afraid of what the ALS is going to do to me. So I'll have to take my N while I can still hold/drink the bottles. My son is going to be devastated either way, and there's nothing I can do about that.

 

[Sweet emotion]

You seem to have a knack for writing "I don't understand" on people's posts (not just mine.) Maybe don't comment on something unless/until you understand the situation or circumstances. Maybe read through not only the original post, but all the follow on comments/responses so that you get the big picture before chiming in. It's just simple common courtesy.


**Update**

I think I'm going to take it week by week for now. But I don't think there's any way I can abandon my N plans altogether because I'm too afraid of what the ALS is going to do to me. So I'll have to take my N while I can still hold/drink the bottles. My son is going to be devastated either way, and there's nothing I can do about that.

I was confused with two posts. One in which the guy who wrote it says he was confused when he did so, so he saw it didn't make any sense. Pardon me for not reading yours twice. You don't have to get snarky. I'm not here to attack anyone. We all have awful things going on in our lives so excuse the hell out of me if I asked a question or two. Get off your high horse.

 

[Blackjack]

I was confused with two posts. One in which the guy who wrote it says he was confused when he did so, so he saw it didn't make any sense. Pardon me for not reading yours twice. You don't have to get snarky. I'm not here to attack anyone. We all have awful things going on in our lives so excuse the hell out of me if I asked a question or two. Get off your high horse.

As we say in the south, bless your heart.

 

[Sweet emotion]

As we say in the south, bless your heart.

As we say in Italian on the east coast......never mind. I'm not going to get kicked out of this group because of a person like you.

 

[Stan]

As we say in Italian on the east coast......never mind. I'm not going to get kicked out of this group because of a person like you.

Continue like this and you won't need any help being removed, you are doing a fantastic job all by yourself

 

[wendydong1]

You seem to have a knack for writing "I don't understand" on people's posts (not just mine.) Maybe don't comment on something unless/until you understand the situation or circumstances. Maybe read through not only the original post, but all the follow on comments/responses so that you get the big picture before chiming in. It's just simple common courtesy.


**Update**

I think I'm going to take it week by week for now. But I don't think there's any way I can abandon my N plans altogether because I'm too afraid of what the ALS is going to do to me. So I'll have to take my N while I can still hold/drink the bottles. My son is going to be devastated either way, and there's nothing I can do about that.

i think week by week is the right thing to do. I think CTB is like having a baby, no time is the right time... you would never be fully ready. U just do it. U just need to get everything ready, which seems like you have already, and be ready to drink N at any time.

 

[Blackjack]

i think week by week is the right thing to do. I think CTB is like having a baby, no time is the right time... you would never be fully ready. U just do it. U just need to get everything ready, which seems like you have already, and be ready to drink N at any time.

I'm ready now, if I'm being honest. I'm so tired. And scared. And tired of being scared. It's no way to live. I cannot do anything to change my situation and every day is torture. My son will not be OK, regardless. And there's not a damn thing I can do about it.

 

[Stan]

Blackjack, we support your decision and hope that things get to a better place for you and your family with all that is going on. Thank you for sharing and reaching out to the board.

This thread is extremely emotive, for me it has shown the best side of a lot of members, and sadly its shown the worse side.

Imagine if you started a thread as a cry for help and nobody fully knew or remembered your story (even though you may have written it in other threads)and got responses that so missed the mark, were actually trollish or came from a pro-lifer point of view, you would be upset. The feeling of isolation becomes stronger because the one place you thought you could share with others going through the same thoughts as you becomes an unwelcome place. Throw away comments for me are dangerous. Trolling or unnecessary aggressive behaviour should have zero tolerance. Pro-lifers should stay in the Recovery section and peddle their wares there.

I am imploring us all to read and understand a story before giving an opinion or a helpful suggestion. If you don't understand enough to give an opinion or suggestion, do what others have done and send messages of support.