I have three beautiful daughters. My middle daughter, Corinne, opened up to me in a letter. She gave me permission to share her thoughts. I have to warn you that her words are beautiful yet heart wrenching.
My dad has ALS and he is slowly dying in front of me. I can see it every day; I can hear the struggle in his breathing and speech getting worse each day. Today he said that he felt so sad he wanted to die. It's hard to hear those words coming from your dad, the man you've forever looked up to, the strongest one in the house.
It's hard to know what to do to make him feel like his life is still worth living. I know it's hard for him to still feel important when he can't move or eat, and can't breathe, speak, or sleep well. I'm sure of that; but it's also difficult for me especially to express how much I love him and need him, just the way he is. I need to see him smile and laugh every day. I need him to be there and listen to my silly stories and I need him to appreciate all the TV shows and movies, goofy humor, and nerdy things that I like.
My dad has ALS and he is slowly dying in front of me. I can see it every day; I can hear the struggle in his breathing and speech getting worse each day. Today he said that he felt so sad he wanted to die. It's hard to hear those words coming from your dad, the man you've forever looked up to, the strongest one in the house.
It's hard to know what to do to make him feel like his life is still worth living. I know it's hard for him to still feel important when he can't move or eat, and can't breathe, speak, or sleep well. I'm sure of that; but it's also difficult for me especially to express how much I love him and need him, just the way he is. I need to see him smile and laugh every day. I need him to be there and listen to my silly stories and I need him to appreciate all the TV shows and movies, goofy humor, and nerdy things that I like.
He's still my dad, and it still feels just the same even though he can't do what he used to do. I feel like as my sisters and I are growing up, we're adopting a lot of his quirks and behaviors and making up for everything he lost the ability to do, but still has in his heart.
We like to do little things like trying to make people laugh, even strangers, and bigger things like wanting to inspire and educate, being in front of crowds and engaging them in whatever we have to say.
We have values like keeping the family together and having a great time no matter what. Nothing has died completely and nothing ever will in our family.
We like to do little things like trying to make people laugh, even strangers, and bigger things like wanting to inspire and educate, being in front of crowds and engaging them in whatever we have to say.
We have values like keeping the family together and having a great time no matter what. Nothing has died completely and nothing ever will in our family.
We get stronger every day, dealing with something like this. My mom has had to take on much more than she ever expected; things that could make the average mother fall apart; but she is amazing and gets through everything with a deep breath and a smile every day.
My older sister is usually away at college, but when she is home she makes sure my dad is happier, and my mom a little less overworked.
My little sister amazes me the most. She's grown up having to work through a lot on her own, and as a result, is definitely the smartest and most talented out of all of us. When I see her with my dad, the responsible caring and mature woman she is becoming really shines through.
My older sister is usually away at college, but when she is home she makes sure my dad is happier, and my mom a little less overworked.
My little sister amazes me the most. She's grown up having to work through a lot on her own, and as a result, is definitely the smartest and most talented out of all of us. When I see her with my dad, the responsible caring and mature woman she is becoming really shines through.
My family is amazing but I often feel like a failure. I don't bring much to the table and constantly disappoint myself and probably my family too. I'm trying to better myself but when I work on bonding with my family I regret not taking more time to myself and then there's this constant loop of regret going.
I need someone. I feel like I have a lot of issues that I need help sorting out and my mom shouldn't have to deal with anything else right now.
The people who say they're there for me outside my family definitely don't realize what they'd be in for, and I can't go around embarrassing myself and being an inconvenience to everyone.
I try to forget everything that bums me out but being at home I constantly have to swallow a lump in my throat and fight back tears. I can't tell if I'm weak or selfish for feeling this bad or if it's normal. I do know that I constantly am seeking attention where I shouldn't to make up for what I'm lacking at home.
I need someone. I feel like I have a lot of issues that I need help sorting out and my mom shouldn't have to deal with anything else right now.
The people who say they're there for me outside my family definitely don't realize what they'd be in for, and I can't go around embarrassing myself and being an inconvenience to everyone.
I try to forget everything that bums me out but being at home I constantly have to swallow a lump in my throat and fight back tears. I can't tell if I'm weak or selfish for feeling this bad or if it's normal. I do know that I constantly am seeking attention where I shouldn't to make up for what I'm lacking at home.
I've always been the type that needed taking care of but I'm trying to make that feeling go away.
One of the hardest things for me is that I forget other people are struggling too, that other people feel pain too. And regardless of what everyone's situation is, we usually feel like our pain is the greatest.
I try to be a really caring person, in that if someone needs to vent about their problems, I will be the one to listen. I hate that it usually wouldn't be ideal for me if the roles were reversed, but that's where we are. So when someone comes to me feeling hopelessly depressed over a breakup or a move or even a divorce I still have an incredibly hard time feeling bad for them. I think to myself, “You think that hurts, here's what's happening in my life!” Of course, I never say this out loud.
I actually don't really tell anyone about my dad, because I don't want to bring anyone down and no one will really understand or respond the way they should anyway. So then I start feeling resentful of everyone and everything, like why doesn't anyone care enough about me?
I'm so desperate for someone to talk to about how hard things are for me, but again I hate sounding selfish, or worse, I'd hate for other people to think I'm making too big a deal out of something.
One of the hardest things for me is that I forget other people are struggling too, that other people feel pain too. And regardless of what everyone's situation is, we usually feel like our pain is the greatest.
I try to be a really caring person, in that if someone needs to vent about their problems, I will be the one to listen. I hate that it usually wouldn't be ideal for me if the roles were reversed, but that's where we are. So when someone comes to me feeling hopelessly depressed over a breakup or a move or even a divorce I still have an incredibly hard time feeling bad for them. I think to myself, “You think that hurts, here's what's happening in my life!” Of course, I never say this out loud.
I actually don't really tell anyone about my dad, because I don't want to bring anyone down and no one will really understand or respond the way they should anyway. So then I start feeling resentful of everyone and everything, like why doesn't anyone care enough about me?
I'm so desperate for someone to talk to about how hard things are for me, but again I hate sounding selfish, or worse, I'd hate for other people to think I'm making too big a deal out of something.
Living with ALS in the family is a challenging, lonely journey. I continue to pretend that everything is okay so I can keep up my cheerleader façade.
One day soon, I suppose I will have to let the world know the truth and that everything is not okay and that events have changed me and my life in ways that to most are unimaginable. I can only hope that someone will be there who understands.
One day soon, I suppose I will have to let the world know the truth and that everything is not okay and that events have changed me and my life in ways that to most are unimaginable. I can only hope that someone will be there who understands.
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