Wife and mother in need of resources

[dahlia32]

I am a new member to this site, looking for support and understanding of our situation and hopefully some resources. My husband was diagnosed with ALS and FTD seven months ago. He is only 40 years old and we have two young boys, 8 and 10. Thankfully, we have an amazing support group of family and friends seeing us through this! We manage day by day, but I am feeling like I need to connect with people who have similar experiences. My husbands symptoms began last summer with slurred speech and choking episodes. The ALS has progressed quickly and he now has a feeding tube and his speech has been severely affected. It is hard for him to communicate, and difficult for us to understand him at times. This has all been very difficult on our boys, and that is one thing I am looking for help with. I am wondering if anyone knows of support groups aimed at children in this type of situation. My oldest keeps saying he just wants a "normal" family and feels like we are the only ones going through this. I was hoping to find him a place he could talk and know that he is not the only one with the feelings he has around a sick parent. It is so hard for me to see our kids struggle with this, wondering if anyone has any ideas...

Thanks so much!
Cherene

 

[adkdreams]

Cherene,

Let me start out by saying so sorry you are joining us here but do use this forum for a wealth of knowledge these people are wonderful.

I know I have seen posts where we have wanted to start a secure website for the kids of PALS. To my knowledge there is still not such a place. If you would like you can email me a private message and we can exchange information and my kids would love to talk with other kids of PALS. My kids are 13, 11, and 8.

Jodi

 

[brooksea]

Cherene, it's a shame, but I know of no support group for young children. Our son just turned 10 and he is struggling.

I'm very sorry about your husband.

Jodi, Cherene will not be able to send you a PM til she posts more. You may want to ask AL, JoelC or David (moderators) to allow the PM between y'all or have them arrange to relay the info.

 

[joelc]

If Jodi PM's me her email address I will forward it to Cherene.

 

[adkdreams]

Joel I sent you a PM and thank you CJ Dondi is anixously awaiting your son's phone call he is very excited and I think this will be awesome for him. Maybe we can revisit something for the kids maybe on our own seeings this was visited before and their were so many hurtles to overcome.

Jodi

 

[mytwoboys]

Hi Cherene,

I also have two boys - now 11 and 8 - they were 8 and 5 when my husband was diagnosed. He is now completely "locked in". My oldest feels the same way your oldest feels. He refused to go out on the field at his baseball game if I brought his dad to the games. He is tired of the stares and whispering when we would go somewhere. He spent one game (when my husband was there) crying in the outfield. I was sure he was going to have some kind of breakdown that day. I feel so badly for him. We are dealing with this, he is starting middle school next month, and I'm sure his hormones are starting to kick in.

My younger one is really starting to notice the effects this is having on our lives. He was pretty oblivious until recently.

f you PM me, I can send you my email and maybe have your son hook up with mine.

Sandy

 

[dahlia32]

Hi Sandy,

Sorry I didn't reply sooner, we have been out of town. I am new to this site and do not know how to send you a PM. Your boys sound like they are going through the same things as mine, and I would love to have them have a chance to talk to each other and maybe know that at least there are other kids out there having to go through the same things. If you don't mind telling me how to PM you, I will be back in touch!

Thanks so much, take care.
Cherene

 

[sadiemae]

Cherene, you need to have 10 posts before you can PM.