I HATE ALS...(long post)

[mrich96]

This is my first post after reading over several threads and finally working up the courage to write my own.

I am married with two beautiful children and I am the primary caregiver for my mom who was diagnosed with ALS last year. I am the oldest of 3 children and my mom does not have a husband or significant other in her life right now.

My mom and I basically grew up together, my parents were 17 years old when she got pregnant. They quickly married and less than 2 years later my dad died unexpectedly, leaving behind my mom (19 years old) with a toddler. My mom remarried 6 years later and had 2 more children. She is now separated from my step-father and has been for close to 4 years now.

We never really had a 'normal' mother/daughter relationship and have never been very close. When she was diagnosed last year she was in a relationship that ended shortly after her diagnosis. At that point she was progressing quickly and had already lost most of her independence. She moved in with us in November of last year.

My husband is AMAZING and has been so supportive and very helpful with my mom. But IT IS HARD!!!! She has lost her mobility, speech is declining quickly, and as of recent her swallowing has gotten worse. Her breathing still seems to be ok for the time being.

I find myself feeling hopeless and alone even with all of my husband's support. My brother and sister are both in college and aren't as helpful as I'd like them to be. Did I mention that I HATE ALS?!?! I feel like it is slowly robbing us of so much; my mom's health, relationships, time, and joy. Some days I feel so selfish for being emotional or even for just being tired.

Well there it is...my first post. Scattered, and poorly written, but there it is. Will post again soon I'm sure, as I have found this forum helpful and comforting and hope maybe, just maybe I can be helpful or encouraging to someone dealing with terrible disease.

 

[Jocalyn8]

welcome to our community!

I am sorry you are here , but on the forum you will find info, tips, smiles and friends.
Cheers
Jocalyn

 

[scaredwifetx]

I am glad you decided to post and sad that you are here. I know how hard it is to take care of your mother full time and the feelings that are brought to surface. My mother and I were never close because she was also 17 and was in and out of my life.

This is so very tough when you are trying to care for a family. You should be very proud. Remember to take care of yourself, take breaks and ask your brother and sister to help.
My thoughts and prayers are with you. Please continue to post here when needed. We all understand. Did I mention that I also hate ALS?


She came to live Steve and time.

 

[Narrowminded]

Welcome Mrich. You have found the right place here. I'm sorry you are here but we all really do understand. I hope you will continue to post. And yeah I hate ALS too

Hugs,

Sue

 

[JimInVA]

I hate ALS, too. I'm glad you found us... and more so... that you have found the motivation to post. Know that, here, we get it. As such, no one is going to disagree and tell you how wonderful ALS is. But we will quietly take your hand... will keep a warm hug at the ready for when you need it... and will sometimes not respond to items in a post other than to let you know that we took the time to read it, to understand that it was more important for you to be able to post and to let you know that we're here and with you.

My best to you...

Jim

 

[Aussiemndcarer]

Jim, you have a great way with words. It is true that this forum is a great place to visit and post especially when things are tough. Mrich96, sorry that you find yourself here,but welcome. You are doing a great job. Family is very important , and your Mum will be ever so grateful that she is not travelling this journey alone.

 

[affected]

Gentleman Jim - DITTO THAT.

We all hate ALS, and we get it!

Welcome Mrich. It is wonderful that you have stepped up to look after your mum, no matter how hard it is. These are the really important things in life after all!

 

[Manhattanite]

I hate ALS too. ALS is the worst thief because it steals futures and dreams.

 

[FamilialALS?]

Welcome mrich your description is so similar to mine. I'm married with kids at home and was moms primary caregiver. My husband was also incredibly supportive. I have two siblings as well, but I'm the youngest (and most responsible). My mom was single too which in the beginning seemed like a disadvantage since there wasn't a spouse to help. But I soon came to appreciate it was "just mom" I had to care for. It seems like often times the spouse requires some level of care too.

My siblings contributed here and there but I was the constant. I will never regret the sacrifice I made to be there to care for my mom. We were not close either but you are doing the right thing. Keep posting here whenever the need arises, the people here are the smartest most compassionate people.