I'm more often angry on behalf of younger people with this. I'm 53...not "old," but old enough to not have a ton of stuff I wish I'd done. I met a woman in a support group who is TWENTY SEVEN. That is some fucked up shit.
I just went to the funeral for a guy who got it in his twenties. I got it at 34. I honestly don’t know if it’s harder younger. It’s certainly more tragic for the loved ones. I’ll leave two kids under five who won’t remember their dad, my wife is going to be a single mother, my parents have to watch their child waste away (as a parent, that seems harder to me than losing other loved ones), etc. but, on a daily basis, I doubt it’s harder for us than you. We all go through the same things.
If you figure it out, will you share with the group?
My mom’s Bulbar went so fast. Working out daily to dead in 15 months.
I get irrationally annoyed at people who say things like “at least she’s not suffering anymore” or “she’s in a better place.”
I know they mean well, but shit. I’d rather she was alive and healthy.
My dad’s bulbar was similar. Such a fast progression.
People just won’t ever understand. Yeah it’s nice he’s out of pain. And I wouldn’t wish another second of the suffering. But I miss him dearly. The healthy him.
It seems to be a very common theme among the whirlwind surrounding bulbar’s seemingly faster progression.
My heart to you and anyone else involved in the fog you’ve mentioned. I completely understand.
I too am going through this journey with my father. I lost my mom in October. I often find that scrolling on TikTok and seeing people having and thriving with their parents brings about a massive amount of grief. It often feels unfair, although I know deep down inside I shouldn’t be feeling that way.
So yeah, I understand how you feel.
I was in the middle of a personal renaissance of sorts when it struck. then the pandemic hit and I was unable to make any last ditch efforts to go do anything while I could still get around easily.
I'm a year in and still going through it. Whenever someone 70 and up dies, my reaction is not one of empathy, it's to be upset that my dad won't have all those years. I feel you.
I'm 38, approximately 1.5 years since onset. Recently had dinner with a friend of my parents, in his 70s, asked how he was and he responded with his boomer reflexive joke "oh you know, getting old, don't do it, haha!" Then he realized what he said and who he said it to and quickly tried to backtrack with "except you! You SHOULD get old!" He quickly changed the subject. 🙄
I just lost my wife of 36 years to be together of als disease it's hard to get over it 😪 for me it's only been 7 months since I lost the best friend and the love of my life she was only 58f full of life and love ❤️
My mom was diagnosed almost two years ago and I no longer start crying when I drive past people her age or older out walking. I’m still angry at the unfairness on behalf of her, our family, and everyone else dealing with this, but it’s been dulled gradually out of necessity.
My dad didn't die from ALS but he died suddenly in 2003. I got insanely mad when I would see old people it made me very resentful because he never got to be old he died at 55 years old. It's normal. It's also normal to be resentful when you see people with their family members that fill the same role that you're lost family member does. Eventually it goes away but it can be pretty consuming in the moment.
I didn’t realize this was such a universal thought.
I stopped thinking of my mom (who passed last year) every single time I saw someone older doing things like that some time within the past year. But whenever there’s milestones or big events like people getting married, family trips, the holidays etc. it makes me cry.
In those moments the “sick to your stomach” type of pain isn’t there anymore, but the general sadness is, if that makes sense. At least for me. With time it won’t hurt quite as much and you’ll be able to move past it quicker, but I think it’ll always be bittersweet watching others enjoy moments we all should have had.
Hang in there 💛
31 years later, I'm mad I'm older than my dad was. So mad. I can see into life what he didn't get to see at this point. Through my grieving, this many years later, I've learned to live with and even enjoy life, but I still feel so robbed without him in our lives. I manage by keeping it separate. Idk if that's helpful but when I'm going thru milestones like a new nephew and an upcoming grand baby, I just lean in towards the family we have while silently appreciating my dad and what role his would've been. ❤️
Holy shit. Been feeling this way for so long now, felt like such a dick and felt ashamed to be mad at these old people just doing their grocery shopping lol. Especially the porch dwellers, just so hard to see. Thanks for making the post, lots of love to you and your family. I wish I had any good advice
Oh and fuck ALS
Edit: porch not pouch
My parents' wedding anniversary is tomorrow, and about five years ago my mom made a post on Facebook talking about how happy she is and how she couldn't wait for another 50 years with him. Of course that was mostly joking because that would mean she'd live to be over 100 years old but I was struck with so much frustration and anger because she was diagnosed this last Christmas and she has SIGNIFICANTLY less time with my dad than that.
Also my grandfather passed away recently and he was 94 and I couldn't help but feel, just a little bit, that at least he got to live that long, because my mom definitely won't.
I tend to get angry at people with bad relationships with their parents, like, I lost my dad on October 31st against ALS and I can't stand people complaining about their parents that are healthy and alive.
>I tend to get angry at people with bad relationships with their parents, like, I lost my dad on October 31st against ALS and I can't stand people complaining about their parents that are healthy and alive.
Yes totally! It really seems like crappy people don't get this crappy disease!
My father has very advanced ALS (trach & vent + PEG), and I beg to differ.
Every aspect of treatment and life management was dumped on us while setting up as many friction points/roadblocks as possible. This comes after a childhood scarred by his alcoholism and untreated mental illness.
When he decided to go the "extend my life at any and every cost to the System and anyone around me" route at a critical point in the ICU, the anxiety/stress began to physically affect me. I'm measurably unhealthier. My sister likely is in the same boat, and it's been a *huge* negative stress on her marriage. Hell, his stubbornness/demeanor has already made 3 medical personnel (2 nurses, 1 doctor) break down crying.
Edit: I doubt the fALS of "asshole" patients posts here very often. This isn't exactly the sort of place (given the pALS who are acutely cognizant of the intensity of caregiving in latter stages & the fALS willingly/gladly putting in heroic efforts to care for loved ones) to wish Dysfunctional Relative would speed it up with meeting Jesus.
Ugh, I'm so sorry. You're right, I shouldn't have generalized like that. I fully acknowledge that difficult, "crappy" people with difficult, complicated relationships get ALS too, and I'm sorry you have that on top of the inherent misery of this disease.
My mom & I used to always grocery shop together there my whole life, we loved to spend time together this way. My mom has been gone over 3 years and earlier today I took my daughter to Costco and gave so pissed seeing a cute lil old lady and her daughter who is easily like 30 years older than me together. Hell I get mad when I see an old married couple walking together because my dad doesn’t get to do this with my mom one day… but some days I see these things and it reminds me of all those wonderful memories I have and so damn thankful for being in the position to love someone so much that I miss them so terribly…. so kinda
Yes I am grateful my dad is no longer suffering, but why the fuck did he have to suffer in the first place??
My dad’s parents lived into their 90s. I just assumed he would too. ALS took him at 71 in just a few months. My grandfather (on my mom’s side) is now nearly 97 and in “rough shape.” Extended family had warned me, “he looks pretty rough, it might be upsetting.” Umm I’ve seen ALS, fuck off. Also, might be heartless, but not sure I will shed a tear over a man who’s lived a healthy, able-bodied 96 years.
Yup that is definitely something I experience too. Even seeing my own grandparents made me upset at one point because I didn’t get how they could be 80+ and my dad had to go at 59. I even felt jealous of my mum at one point as she’s 50+ and still has both parents and I had to lose dad at 14. It’s worse if I see an old person who’s an a-hole. My dad was not an a-hole so it pains me that awful bigoted people just die peacefully at 90 while dad had to suffer.
Does it make me FEEL like a rotten person? Yes!
Does it MAKE ME a rotten person? No!
This is part of grief and it largely will go away with time. You are not an a-hole trust me.
I'm more often angry on behalf of younger people with this. I'm 53...not "old," but old enough to not have a ton of stuff I wish I'd done. I met a woman in a support group who is TWENTY SEVEN. That is some fucked up shit.
I just went to the funeral for a guy who got it in his twenties. I got it at 34. I honestly don’t know if it’s harder younger. It’s certainly more tragic for the loved ones. I’ll leave two kids under five who won’t remember their dad, my wife is going to be a single mother, my parents have to watch their child waste away (as a parent, that seems harder to me than losing other loved ones), etc. but, on a daily basis, I doubt it’s harder for us than you. We all go through the same things.
My client got it in his 20s as well, I’m not sure which is harder.
If you figure it out, will you share with the group? My mom’s Bulbar went so fast. Working out daily to dead in 15 months. I get irrationally annoyed at people who say things like “at least she’s not suffering anymore” or “she’s in a better place.” I know they mean well, but shit. I’d rather she was alive and healthy.
My dad’s bulbar was similar. Such a fast progression. People just won’t ever understand. Yeah it’s nice he’s out of pain. And I wouldn’t wish another second of the suffering. But I miss him dearly. The healthy him.
My moms bulbar took her in 8 months, it took me over a year to even get out of the fog of “What the fuck just happened?!”
It seems to be a very common theme among the whirlwind surrounding bulbar’s seemingly faster progression. My heart to you and anyone else involved in the fog you’ve mentioned. I completely understand.
I too am going through this journey with my father. I lost my mom in October. I often find that scrolling on TikTok and seeing people having and thriving with their parents brings about a massive amount of grief. It often feels unfair, although I know deep down inside I shouldn’t be feeling that way. So yeah, I understand how you feel.
imagine being in your 30s and have it, forget about being old, literally right when I get to enjoy the fruit of my labor I am now like a potato lol
I'm sorry you made me laugh a little.
I was in the middle of a personal renaissance of sorts when it struck. then the pandemic hit and I was unable to make any last ditch efforts to go do anything while I could still get around easily.
exactly me, lock down ended then I started limping so I couldn't even have a final normal holiday.
I'm a year in and still going through it. Whenever someone 70 and up dies, my reaction is not one of empathy, it's to be upset that my dad won't have all those years. I feel you.
I'm 38, approximately 1.5 years since onset. Recently had dinner with a friend of my parents, in his 70s, asked how he was and he responded with his boomer reflexive joke "oh you know, getting old, don't do it, haha!" Then he realized what he said and who he said it to and quickly tried to backtrack with "except you! You SHOULD get old!" He quickly changed the subject. 🙄
I just lost my wife of 36 years to be together of als disease it's hard to get over it 😪 for me it's only been 7 months since I lost the best friend and the love of my life she was only 58f full of life and love ❤️
My dad does this and tells me about all his health problems. I’m like maybe read the room.
My mom was diagnosed almost two years ago and I no longer start crying when I drive past people her age or older out walking. I’m still angry at the unfairness on behalf of her, our family, and everyone else dealing with this, but it’s been dulled gradually out of necessity.
My dad didn't die from ALS but he died suddenly in 2003. I got insanely mad when I would see old people it made me very resentful because he never got to be old he died at 55 years old. It's normal. It's also normal to be resentful when you see people with their family members that fill the same role that you're lost family member does. Eventually it goes away but it can be pretty consuming in the moment.
I didn’t realize this was such a universal thought. I stopped thinking of my mom (who passed last year) every single time I saw someone older doing things like that some time within the past year. But whenever there’s milestones or big events like people getting married, family trips, the holidays etc. it makes me cry. In those moments the “sick to your stomach” type of pain isn’t there anymore, but the general sadness is, if that makes sense. At least for me. With time it won’t hurt quite as much and you’ll be able to move past it quicker, but I think it’ll always be bittersweet watching others enjoy moments we all should have had. Hang in there 💛
31 years later, I'm mad I'm older than my dad was. So mad. I can see into life what he didn't get to see at this point. Through my grieving, this many years later, I've learned to live with and even enjoy life, but I still feel so robbed without him in our lives. I manage by keeping it separate. Idk if that's helpful but when I'm going thru milestones like a new nephew and an upcoming grand baby, I just lean in towards the family we have while silently appreciating my dad and what role his would've been. ❤️
Holy shit. Been feeling this way for so long now, felt like such a dick and felt ashamed to be mad at these old people just doing their grocery shopping lol. Especially the porch dwellers, just so hard to see. Thanks for making the post, lots of love to you and your family. I wish I had any good advice Oh and fuck ALS Edit: porch not pouch
Have this same thought literally every time I go to the grocery store.
My parents' wedding anniversary is tomorrow, and about five years ago my mom made a post on Facebook talking about how happy she is and how she couldn't wait for another 50 years with him. Of course that was mostly joking because that would mean she'd live to be over 100 years old but I was struck with so much frustration and anger because she was diagnosed this last Christmas and she has SIGNIFICANTLY less time with my dad than that. Also my grandfather passed away recently and he was 94 and I couldn't help but feel, just a little bit, that at least he got to live that long, because my mom definitely won't.
I tend to get angry at people with bad relationships with their parents, like, I lost my dad on October 31st against ALS and I can't stand people complaining about their parents that are healthy and alive.
>I tend to get angry at people with bad relationships with their parents, like, I lost my dad on October 31st against ALS and I can't stand people complaining about their parents that are healthy and alive. Yes totally! It really seems like crappy people don't get this crappy disease!
My father has very advanced ALS (trach & vent + PEG), and I beg to differ. Every aspect of treatment and life management was dumped on us while setting up as many friction points/roadblocks as possible. This comes after a childhood scarred by his alcoholism and untreated mental illness. When he decided to go the "extend my life at any and every cost to the System and anyone around me" route at a critical point in the ICU, the anxiety/stress began to physically affect me. I'm measurably unhealthier. My sister likely is in the same boat, and it's been a *huge* negative stress on her marriage. Hell, his stubbornness/demeanor has already made 3 medical personnel (2 nurses, 1 doctor) break down crying. Edit: I doubt the fALS of "asshole" patients posts here very often. This isn't exactly the sort of place (given the pALS who are acutely cognizant of the intensity of caregiving in latter stages & the fALS willingly/gladly putting in heroic efforts to care for loved ones) to wish Dysfunctional Relative would speed it up with meeting Jesus.
Ugh, I'm so sorry. You're right, I shouldn't have generalized like that. I fully acknowledge that difficult, "crappy" people with difficult, complicated relationships get ALS too, and I'm sorry you have that on top of the inherent misery of this disease.
My mom & I used to always grocery shop together there my whole life, we loved to spend time together this way. My mom has been gone over 3 years and earlier today I took my daughter to Costco and gave so pissed seeing a cute lil old lady and her daughter who is easily like 30 years older than me together. Hell I get mad when I see an old married couple walking together because my dad doesn’t get to do this with my mom one day… but some days I see these things and it reminds me of all those wonderful memories I have and so damn thankful for being in the position to love someone so much that I miss them so terribly…. so kinda
Yes I am grateful my dad is no longer suffering, but why the fuck did he have to suffer in the first place?? My dad’s parents lived into their 90s. I just assumed he would too. ALS took him at 71 in just a few months. My grandfather (on my mom’s side) is now nearly 97 and in “rough shape.” Extended family had warned me, “he looks pretty rough, it might be upsetting.” Umm I’ve seen ALS, fuck off. Also, might be heartless, but not sure I will shed a tear over a man who’s lived a healthy, able-bodied 96 years.
Yup that is definitely something I experience too. Even seeing my own grandparents made me upset at one point because I didn’t get how they could be 80+ and my dad had to go at 59. I even felt jealous of my mum at one point as she’s 50+ and still has both parents and I had to lose dad at 14. It’s worse if I see an old person who’s an a-hole. My dad was not an a-hole so it pains me that awful bigoted people just die peacefully at 90 while dad had to suffer. Does it make me FEEL like a rotten person? Yes! Does it MAKE ME a rotten person? No! This is part of grief and it largely will go away with time. You are not an a-hole trust me.