Hello, I'm new

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lisaohgee

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Oct 21, 2009
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State
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Evergreen Park
Hello everyone.

My mom was diagnosed with ALS in May of this year. She's 53. I just had a baby boy in March. It's been very hard on all of us. I feel a lot of guilt because I can't do more to help her. My stepdad is amazing and has been doing everything.

It's hard for me to talk to my friends and what not becuase they don't really understand what is going on or how bad the prognosis is. I am hoping here I can get some support and understanding.

Thanks.
 
Welcome to the board, but I'm so sorry to hear what brings you here.

I'm in a similar situation. My dad was diagnosed in June (he's 68 ) and as the only child, I've taken on a lot of the "paperwork" and "managerial" aspects of his illness. My mom is the primary caretaker just as your stepdad is.

I really understand the guilt, too. I do backflips to try to make things easier, but I have a full-time job, a 5-year-old, and a have been waiting since February for a referral to adopt a second child. It all gets to be a bit much, but yet I feel I should do more. I teach, but I've started to carry my phone into classes so I can pick it up when I see it's my mom! (Don't worry...I'm not teaching young kids who I need to keep an eye on! :) My students are adults.)

Anyway, I think you'll find this to be a very welcoming place. I find that in my hours of frustration...heck, who am I kidding...in my DAYS of frustration, I turn here where people "get it." I print stuff out for my mom and dad to read, too, as they're not computer people. It's good to have an outlet.

Have you hooked up with a local ALS support group? I'm just across the border to your north. We have a great one here. I don't know what I'd do without them!

Best to you!
 
Lisa-
I bet the last thing your mom would want would be for you to feel guilty! She understands how much time a newborn needs & that you are busy being a new mom.
Talk to her and tell her how you feel.

If you live close to your mom, you can help her by just visiting often with the baby. That would be a great distraction. My husband was diagnosed last year, shortly before our 1st grandchild was born. We see her often, (in fact, they just moved after living with us for 4 months) and she was/is the BEST medicine my husband could have!

You don't need to DO anything for your mom, except just be with her! And let her see you being a mom to your baby. It's a great thrill for a parent to see their kids being a parent!

Congratulations on you new baby boy! Don't let your mother's diagnosis rob you of enjoying this time- I'm sure she wouldn't want that!
 
I am also an only child, and definitely have taken on the administrative and managerial tasks.

There is a support group near me, but with my son it's difficult to go for two hours -- I work full time so I like to spend as much time with him as I can.
 
Thanks. We go see my mom every weekend and she does love seeing my son. I know it helps, it's just so hard to know she can't pick him up, or help me with him.
 
Hi Lisa,
Just wanted to say hello, and let you know that you are not alone. My mother is 53 as well and was diagnosed 2 years ago. I have 2 children, ages 5 and 2, and I feel so guilty that I cannot do more for her. I am 33 years old and I have had a really tough time coping with my mother being ill. You don't expect to have to go through this until you're much older. It is like you are not prepared for it. I don't really have great advice for you, but know that you're not alone. Just pray about it and stay strong for your mom. Let me know if you need anything.
 
Interesting coincidence, I too am 53 and was just diagnosed a couple of months ago, with two kids in their twenties. Luckily I was diagnosed very early and am hardly affected by the disease so far. I saw something today about how ALS is more like a disease that hits the family rather than just the person. It means changes for everyone.

I don't have huge expectations for how my kids should react. For now we are just pretty much living life as normal. I think that will be how we approach it, for as long as possible. Just enjoy life and try not to be too worried about what lies ahead. We will see what happens as the disease gets worse.
 
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