Help 17-yo Son’s Meltdown

[Blackjack]

Hi Blackjack. I admire you taking control of your own situation; having an exit plan is the only reasonable option with ALS. I'm so sorry it has come to this for you.

I understand ALS, and I have an 18 yr-old son.

You need to remain with your son until your condition won't allow you to function in a meaningful way anymore. He needs you. If you leave him now, during this critical time, it will irrevocably alter the course of his life. He may even internalize it and blame himself for causing you stress.

Meanwhile... he knows your condition is deteriorating, and that your death is imminent. You need to have a heart-to-heart with him about what's going to happen, mostly about the plan you have in place for him after you're gone. Tell him you would be there for him until the end of time if you could, but unfortunately this disease has robbed you of that... robbed you both, really. I think the best you can do is have a detailed plan in place that he's aware of. An explanation of what will happen, how things will change, who will take the place of things you do for him, counseling services you've set up, the support network that's in place, etc.

He fears losing you, and the unknown of what his life will be like without you. Fear of the unknown is terrifying; maybe you can allay some of that anxiety if he knows exactly what's going to happen when you're gone. I would even buy and put aside some gifts for him that his father or someone else can give him for his graduation, birthday, etc, from you, even though you can't be here... it'll be like you're still looking out for him from beyond.

Stay with him as long as you can, Blackjack. When the time comes that you just can't do it anymore, he will understand.

As an aside, I think it's complete shit that your kid played his heart out for 2 years to get cut from a team. That coach should be fucking ashamed of himself.

Thank you for your thoughtful response. I have been/am doing many of the things you suggested. And I agree with your thoughts about him being cut after working so hard in the basketball program the past 2 years. I think his coaches could have had some compassion to look at the bigger picture and how suddenly being an outsider is going to affect him. But that's the protective Mama bear in me. And life is unfair and cruel, and I can't protect him anymore.

 

[GeorgeJL]

In addition to watching his Mom dying a slow, painful, terminal death due to ALS/Lou Gehrig's Disease, everything that can go wrong in my 17-yo son's life since school started a mere month ago has gone wrong; from getting cut from the basketball team for the first time ever, to losing his brotherhood of basketball friends that he's had for years due to their shared passion for the game, to his first girlfriend moving away, to his car breaking down. Now he hates school and getting him to go is a daily battle because his motivation for keeping his grades up was always tied to basketball eligibility. His entire HS plan has been derailed because of it and he is reeling.

Tonight he had a complete & total meltdown of epic proportions. I've never seen him like this. He told me that he's never felt anything remotely similar to this and on top of his basketball/girl/friends/car issues, he tearfully admitted that he's terrified about my deteriorating condition & imminent death (mind you he has no idea I'm planning on exiting early in less than 2 weeks.)

Watching my beloved son cry buckets about his genuine heartbreak over everything in his life going to shit in the last 30+ days is beyond excruciating. The pain is visceral. Not being able to help him is probably the worst pain I've known. I'm terrified for him and what will happen when I'm gone in 15 days. It will be the ultimate blow to the shitstorm that has been the start to his Junior year.

What the fuck am I going to do? How can I leave my kid like this? Why is this world so fucking cruel that this young man can't even catch a break in other aspects of his life to soften the blow of his Mom's impending death? He doesn't deserve this. He's a good kid who has never given me any of the usual teenage challenges with partying or grades or anything like that because he was always solely focused on basketball. He is now at risk for every potential bad behavior/choice because he'll feel like he has nothing to lose, especially after I die. Fuck you universe! It's not enough that you destroy my life, you have to destroy my kid's in the process?

Oh my fucking God, what am I going to do? Should I delay or altogether abandon my plans to exit early? I'm dying either way and can't do a goddamn thing to help him, but my dying in a matter of days will most certainly send him over the edge. What kind of Mom would I be to abandon him now? Someone please make it stop. My heart is breaking in to a million pieces thinking about what's going to happen to him if I go now. I am beside myself with worry and don't know what to do.

You should stick around at least for now and help your son IMO. What you can do is buy him a DVD collection on how to improve basketball skills. A boot camp of sorts, and help him practice, so that he can play next season.

 

[Stan]

A boot camp of sorts, and help him practice, so that he can play next season.

Sadly Blackjacks disease prevents that type of help and the same disease has put her on a particular time-frame that her window of opportunity is shrinking

 

[Blackjack]

Dearest black jack, this isn't the right way. There are many callous nut jobs online so asking them to determine this for you is not in your best interests.
If you can delay, if you have the strength left then this is best. But no one can or should make you endure the unendurable.
Does your son have counselling? Can this be sorted for him? Does he have a good relationship with his dad? I'm thinking of things that may give you minimal comfort knowing you will be leaving one way or the other. I assume he knows this is terminal for you. Xx
9

Please understand that no one's vote, or the collective of the votes, will determine my fate/outcome. I'm just genuinely curious what others would do if in my situation because I have no one to talk to about this. Everybody's input is helpful to me as I process my impossible situation. But thank you, honestly, for your concern.

 

[Stan]

Everybody's input is helpful to me as I process my impossible situation. But thank you, honestly, for your concern

You are not alone, even if we can't give you perfect answer just know that you are not alone and you can talk away as much as you want

 

[Blackjack]

You should stick around at least for now and help your son IMO. What you can do is buy him a DVD collection on how to improve basketball skills. A boot camp of sorts, and help him practice, so that he can play next season.

The level of competition at his HS is hard to articulate and he's been participating in every facet of training & skills development, on & off season, for 2 years, year round. This goes beyond DVD's, and I can't "help him practice", even if I wasn't dying.

Although it would be ideal to delay for a better time as to not overwhelm your family, would waiting for a better time be the best? Even if he gets things back on track a little bit later, do you think that'd make things worse for him when things are getting better and he's even more disappointed?

It's really a tough call. The later stages of ALS are horrifying and I wouldn't expect anyone to go through that voluntarily. I'd say to delay as much as possible but at the same time not to delay for too long as to where you would have to endure til the very end. I'd make sure he understood that ALS is a non-recoverable disease ahead of time unless he already understands that. Otherwise, he would only get his hopes up. All of this, of course, is only my honest opinion and I don't know what it's like to be in your position.

Thank you for your thoughtful response. Yes, of course he knows that ALS is an always fatal, non-recoverable disease. He knows that his Mom will not get out of this alive.

I agree and I am sorry if it caused offence. I am not a parent so I can't grasp that reality xx

I did read all of the thread and yes I agree my comment was especially cold. I have personally apologized to blackjack.

No one owes me any apologies for expressing opinions that I asked for. Nothing anyone could say could possibly hurt me more than I'm already hurting. And no one opinion, or collective of opinions, will determine my fate. No one has that kind of power over me. I'm just genuinely curious what people would do if they were in my situation, that is all. I am alone in this & have no one else to talk to.

 

[GeorgeJL]

The level of competition at his HS is hard to articulate and he's been participating in every facet of training & skills development, on & off season, for 2 years, year round. This goes beyond DVD's, and I can't "help him practice", even if I wasn't dying.


Thank you for your thoughtful response. Yes, of course he knows that ALS is an always fatal, non-recoverable disease. He knows that his Mom will not get out of this alive.


No one owes me any apologies for expressing opinions that I asked for. Nothing anyone could say could possibly hurt me more than I'm already hurting. And no one opinion, or collective of opinions, will determine my fate. No one has that kind of power over me. I'm just genuinely curious what people would do if they were in my situation, that is all. I am alone in this & have no one else to talk to.

Sounds like he put all of his eggs in one basket and that basket fell. What you need to do is teach him to not be dependent on one thing, get him involved in other things. A strong man has many options, he doesn't get tied down by one thing. He doesn't base his whole identity on one thing. I'll PM you some stuff that will help him.

 

[Deleted member 1768]

In addition to watching his Mom dying a slow, painful, terminal death due to ALS/Lou Gehrig's Disease, everything that can go wrong in my 17-yo son's life since school started a mere month ago has gone wrong; from getting cut from the basketball team for the first time ever, to losing his brotherhood of basketball friends that he's had for years due to their shared passion for the game, to his first girlfriend moving away, to his car breaking down. Now he hates school and getting him to go is a daily battle because his motivation for keeping his grades up was always tied to basketball eligibility. His entire HS plan has been derailed because of it and he is reeling.

Tonight he had a complete & total meltdown of epic proportions. I've never seen him like this. He told me that he's never felt anything remotely similar to this and on top of his basketball/girl/friends/car issues, he tearfully admitted that he's terrified about my deteriorating condition & imminent death (mind you he has no idea I'm planning on exiting early in less than 2 weeks.)

Watching my beloved son cry buckets about his genuine heartbreak over everything in his life going to shit in the last 30+ days is beyond excruciating. The pain is visceral. Not being able to help him is probably the worst pain I've known. I'm terrified for him and what will happen when I'm gone in 15 days. It will be the ultimate blow to the shitstorm that has been the start to his Junior year.

What the fuck am I going to do? How can I leave my kid like this? Why is this world so fucking cruel that this young man can't even catch a break in other aspects of his life to soften the blow of his Mom's impending death? He doesn't deserve this. He's a good kid who has never given me any of the usual teenage challenges with partying or grades or anything like that because he was always solely focused on basketball. He is now at risk for every potential bad behavior/choice because he'll feel like he has nothing to lose, especially after I die. Fuck you universe! It's not enough that you destroy my life, you have to destroy my kid's in the process?

Oh my fucking God, what am I going to do? Should I delay or altogether abandon my plans to exit early? I'm dying either way and can't do a goddamn thing to help him, but my dying in a matter of days will most certainly send him over the edge. What kind of Mom would I be to abandon him now? Someone please make it stop. My heart is breaking in to a million pieces thinking about what's going to happen to him if I go now. I am beside myself with worry and don't know what to do.

Blackjack I know how hard life id. Believe me I know. I am still here because my sons need just a little more time. I too am dying, and I have everything I need to go, but I cannot abandon them at this time, and that is what I would be doing, if I go now. You sound very much like me, and honestly if you can wait...do so. Death will wait...but your son needs you now, and since he has opened the door to sharing his fears it is the perfect opportunity to talk to him about his future. He needs support right now, and so do you. Please hon. if you can hang on for a little longer I would highly recommend it. Your son is grieving for you and there is nothing harder to face. Hugs Jack.

 

[Blackjack]

Sounds like he put all of his eggs in one basket and that basket fell. What you need to do is teach him to not be dependent on one thing, get him involved in other things. A strong man has many options, he doesn't get tied down by one thing. He doesn't base his whole identity on one thing. I'll PM you some stuff that will help him.

Honestly George, your advice is not helpful. My son has been taught from a young age to pursue his sole passion (basketball) with 200% effort, which he has done successfully until now. His identity is completely tied to basketball because he's played it, studied it, practiced it year round, at great expense to his parents, since he was 5 years old. It's all he knows.

If you recall from my original post, I didn't reach out for help with my son's basketball dreams being dashed. You can rest assured that we are doing everything humanly possible to support him through this. And frankly, your platitudes and pep talks are pointless because you do not know what you're talking about when it comes to uber competitive basketball at a high school ranked among the top 5 in the state.

My question to this group is whether I should delay/cancel my exit plans because of my son's current struggles (of which basketball is one.) If you can't chime in on that, you're not helping. Thank you.

Blackjack I know how hard life id. Believe me I know. I am still here because my sons need just a little more time. I too am dying, and I have everything I need to go, but I cannot abandon them at this time, and that is what I would be doing, if I go now. You sound very much like me, and honestly if you can wait...do so. Death will wait...but your son needs you now, and since he has opened the door to sharing his fears it is the perfect opportunity to talk to him about his future. He needs support right now, and so do you. Please hon. if you can hang on for a little longer I would highly recommend it. Your son is grieving for you and there is nothing harder to face. Hugs Jack.

Thank you for your thoughtful response, Jack. If you could PM me with a little more detail about your imminent death & how you're helping your boys deal with it, that would be much appreciated.

 

[bea1974]

I lost a friend to ALS 9 years ago. She had no family so me and two other friends were it for her, for her last 4 years of life (from diagnosis to death).

@Blackjack

Apologies if you've said this already and I've missed it, but what type of ALS do you have? How far advanced is it right now? How many months/years do you have left of still being physically capable of doing what you need to do to ctb, do you think?

 

[Blackjack]

I lost a friend to ALS 9 years ago. She had no family so me and two other friends were it for her, for her last 4 years of life (from diagnosis to death).

@Blackjack

Apologies if you've said this already and I've missed it, but what type of ALS do you have? How far advanced is it right now? How many months/years do you have left of still being physically capable of doing what you need to do to ctb, do you think?

Not sure I understand your question because there is only 1 type of ALS. Because I'm relatively young & otherwise healthy, I could linger on for longer than I care to with zero quality of life. My prognosis is fatal, with a 1-2 year max life expectancy with invasive measures being taken (Bipap & feeding tube, which I have refused.)

I am currently bedridden 24/7, unable to walk, or talk clearly, and have limited use of my arms/hands to type on phone & feed/hydrate myself. I need help with everything else. 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.

 

[Ricks]

This is so heartbreaking and cruel to read. I'm really at a loss for words. Sometimes virtual hugs can help, sometimes not. I'm giving you one regardless.

 

[bea1974]

Not sure I understand your question, as there is only 1 type of ALS. Because I'm relatively young & otherwise healthy, I could linger on for longer than I care to with no quality of life. My prognosis is fatal, with a 1-2 year max life expectancy with invasive measures being taken (Bipap & feeding tube, which I have refused.)

I am currently bedridden 24/7, unable to walk, or talk clearly, and have limited use of my arms/hands to type on phone & feed/hydrate myself. I need help with everything else. My ability to be able to actually hold/drink the N will stop in probably 2-3 months, so my window of being able to help myself pass peacefully is closing.

Sorry I had mistakenly thought that ALS was what we in the UK call Motor Neurone Disease, which is what my friend had. Turns out ALS is one of the types of MND. There are several types of MND but as you say only one type of ALS. My bad. Thank you for your patience and taking the time to explain.

I am so sorry that you have this awful disease. Whatever you do (or don't do) your son will suffer, as you know of course. It is terribly unfair and utterly heartbreaking. You cannot protect him from this pain. He will lose his mum either way. I wouldn't dream of telling you what to do but will say you have every right to do whatever you feel is best for you. If ever there was a time to be selfish, this is it. Your son will have decades of life to come to terms with his loss. It will be painful for him if you ctb early but it will be painful for him either way.

That's the fault of the disease, it's not on you.

 

[Blackjack]

Bump. Please read my story & my follow on responses and vote.

 

[JesterThrowAway]

BlackJack,

I voted yes. Honestly believe that as long as we have something to do here, we shouldn't CTB, otherwise it's cowardice and weakness. Not trying to be judgemental - it just happened for me the way and kept me afloat here.

You can CTB when everything you believe has to be done is done. Nothing more left to worry about, no more thing to do.

 

[stormrOzzy]

I wish I had words to say and try to help: X

 

[kkatt]

Having had a partner die from this condition,I personally believe that the tragic progress of the patient is not something I would choose to put my kids through. You're so very brave and helpless and of course they don't want to lose you early or ever.
But they have to think of your suffering too. I hope they will have plenty of support after.
Watching a loved one whither away to nothing until finally suffocating to death is something nobody should have to go through or watch a loved one go through
It's an incredibly difficult situation. If I had been able, I would never have let him suffer like that.
You're so brave and passionate about his happiness, but seeing the final stages will be even more devastating. There are also occasions where you have to start thinking about yourself.
Remember many people such as bill gates an Albert Einstein failed at school.

 

[Blackjack]

Having had a partner die from this condition,I personally believe that the tragic progress of the patient is not something I would choose to put my kids through. You're so very brave and helpless and of course they don't want to lose you early or ever.
But they have to think of your suffering too. I hope they will have plenty of support after.
Watching a loved one whither away to nothing until finally suffocating to death is something nobody should have to go through or watch a loved one go through
It's an incredibly difficult situation. If I had been able, I would never have let him suffer like that.
You're so brave and passionate about his happiness, but seeing the final stages will be even more devastating. There are also occasions where you have to start thinking about yourself.
Remember many people such as bill gates an Albert Einstein failed at school.

Thank you for your thoughtful response. You have impacted my life in the most profound way and I am forever grateful. xo

 

[Jolene40]

Blackjack, i am here because I have multiple horrific illnesses. I have no clear prognosis but have been deathly unwell for some time and just out hospital after 5 months of torture. I have a small son. I know that when I can no longer hide any of this and am a useless cabbage I would feel it best for all if I departed.
There's a kids film called A monster calls. I watched it not realising what it was about but it made me physically sick as it's the story of a young boy whose mum is dying. In the end he wants her to just die so all the bloody suffering is over for everyone.
Only you know when that time has come.
I feel your pain intensely as a mother to a son. I have had to move my son's school and move him to be more with his father and stepmum and siblings as I know my time is limited. It is the most unimaginable pain known to a human I believe, aside from your child dying.
I can only suggest you live day by day as imagine this situation is so unpredictable.
I hate hearing how cut throat sports can be for kids. It's devastating for him but he will find another way. You have all my love my friend ❤

 

[Stan]

otherwise it's cowardice and weakness

Getting really annoyed with how some people are wording things to Blackjack in this thread

 

[Throwaway9787]

Honestly, perhaps dying naturally is the best bet for your kids, even if it is less humane.

 

[Stan]

Honestly, perhaps dying naturally is the best bet for your kids, even if it is less humane

As someone who watched their mother die with a debilitating disease (not ALS though) there is another side to that coin for both the individual and immediate family.

 

[Throwaway9787]

As someone who watched their mother die with a debilitating disease (not ALS though) there is another side to that coin for both the individual and immediate family.

Yeah maybe the immediate downside isn't representative of the overreaching picture.

 

[woxihuanni]

Blackjack, i am here because I have multiple horrific illnesses. I have no clear prognosis but have been deathly unwell for some time and just out hospital after 5 months of torture. I have a small son. I know that when I can no longer hide any of this and am a useless cabbage I would feel it best for all if I departed.
There's a kids film called A monster calls. I watched it not realising what it was about but it made me physically sick as it's the story of a young boy whose mum is dying. In the end he wants her to just die so all the bloody suffering is over for everyone.
Only you know when that time has come.
I feel your pain intensely as a mother to a son. I have had to move my son's school and move him to be more with his father and stepmum and siblings as I know my time is limited. It is the most unimaginable pain known to a human I believe, aside from your child dying.
I can only suggest you live day by day as imagine this situation is so unpredictable.
I hate hearing how cut throat sports can be for kids. It's devastating for him but he will find another way. You have all my love my friend ❤

I watched that movie. Was surprised they dared to make it.

@Blackjack, I respect you a lot. Your son has a very clear-headed and strong mother. Not advice to offer because it is beyond my league, just this to say.

 

[Blackjack]

Honestly, perhaps dying naturally is the best bet for your kids, even if it is less humane.

There is nothing natural about suffocating to death from ALS.

Getting really annoyed with how some people are wording things to Blackjack in this thread

You're my hero Stan (hugs)

 

[Throwaway9787]

There is nothing natural about suffocating to death from ALS.


You're my hero Stan (hugs)

It's a natural death in societal terms, doesn't mean you have to agree with it. I'm not trying to force it on you. You asked for an opinion

 

[Blackjack]

It's a natural death in societal terms, doesn't mean you have to agree with it. I'm not trying to force it on you. You asked for an opinion

ALS is not a natural death in societal terms. You are not forcing anything on me. I asked for opinions on whether I should delay/cancel my early exit plans due to my son's current struggles.

 

[Throwaway9787]

ALS is not a natural death in societal terms. You are not forcing anything on me. I asked for opinions on whether I should delay/cancel my early exit plans due to my son's current struggles.

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

 

[Stan]

Well thank the lord it's a pro-choice forum........................

Having had a partner die from this condition,I personally believe that the tragic progress of the patient is not something I would choose to put my kids through. You're so very brave and helpless and of course they don't want to lose you early or ever.
But they have to think of your suffering too. I hope they will have plenty of support after.
Watching a loved one whither away to nothing until finally suffocating to death is something nobody should have to go through or watch a loved one go through
It's an incredibly difficult situation. If I had been able, I would never have let him suffer like that.
You're so brave and passionate about his happiness, but seeing the final stages will be even more devastating. There are also occasions where you have to start thinking about yourself.

So sorry for your story kkatt.

 

[wendydong1]

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?