New to the site

[lizzy]

Hi everyone,
I am new to this site but it looks like there are some wonderful and supportive members out there, from posts I have browsed through so far.
I don't have much to say right now except for the quick rundown
My husband is 37 (I'm 30) and we have 2 kids (13 & 5). We are awaiting official diagnosed of ALS in November he is set for testing. he has been unable to work for 3 years and the dr's have "guessed" he had fibromyalgia and CFS but it's been progressively worsening especially the last couple months. He uses a cane and probably needs a walker but he's too stubborn (understandably).
I'm totally overwhelmed with having dealt with all this without any answers for 3 years. Being the wife, mother, sole breadwinner etc. is more than I can take some days and I always thought I was a tough chick.
Dr. Strong in London finally saw him about a month ago and suspects he has ALS, which is why the EMG & NCR have been ordered. I want to know but I don't.
Can anyone give any advice on how to tell the kids, being the ages they are we will have to talk to them seperately but I would appreciate any advice...
I will do my best to post and support everyone here as much as possible too, although I work a lot and am too tired to get on the computer at night!
Best wishes to all of you dealing with this disease.

 

[brendapals]

lizzy,
Sorry you had to find us, but believe me, you will find enormous support on this site! So welcome to the family!

My boys are 17,14 and 7. After I got my official diagnosed on 6/3/08, my hubby and I had to "digest" the whole thing before we told the boys. I chose to tell them as a group when they were in the blow up pool in our back yard. Yes, it was difficult, I cried, they cried, but I think they were thankful that I was honest with them.

Kids are a lot tougher than we think they are. I thought I was tough when my mom was diagnosed with ms when I was 17. I had always thought I didn't want my kids to have to deal with what I did. Little did I know, ALS would enter my life! The older boys held my hand every time we were in the car for about 2 weeks. The 7 yr old continues to hug, which I don't mind a bit!

We are dealing with all of it as a family, my hubby is retiring today, the boys have learned how to clean the house, and we just deal with life every day as if it were our last. I didn't mean to ramble on, but I type much faster than I talk!

My prayers are with you,
Keep the faith,
brenda

 

[brooksea]

Hi Lizzy!

I can only tell you how we have dealt with my husband's illness.

Our son just turned 8. We have explained that Daddy is sick and cannot do all the things he used to. I've had private conversations with him when the occasion arises and he has began asking questions about his Dad. I answer these questions as honestly as I can without drama and he seems to accept what I say in stride.

Life is what you make it to a child. They are resilient and understand things in small doses. We've never said Daddy is going to die, as we all die, some just sooner than others. We can't predict when that will happen, but I'm sure my son will catch on when things start really going downhill. No use in burdening him with more than is necessary. I want my husband and my son to have a joyful time together while they can.

As for your older child, that will be different and I can't really offer any advice.

Good luck. I'm hoping that you will not have to have such conversations with your children and that your husband will "dodge the bullet."

 

[hboyajian]

An additional thought...Your older child will be likely to look up ALS on the internet at some point, and will find scores of information, both true and false. If you can be proactive and help guide them to helpful medical sites (if they show interest in this) which you can explore together, it could be less overwhelming.

 

[Al]

Hi Lizzy. Here's a link that might give you some help.

AL.

http://www.alsindependence.com/Telling_Children_About_ALS_MND.htm

 

[Icanmanz]

lizzy you and your family are in my prayers. Welcome to the forum, and good luck!

Irma

 

[lizzy]

Thank you so much to everyone who has repsonded to my post. Al, thanks for the site, it will help when it comes time. I am happy to have found such a helpful and supportive place to come to during this process.

 

[anneinma]

Our daughter was 16 when my husband was dix. We waited to tell her until we got a 2nd dix. and ruled out everythine else. She was having a difficult year herself at school and with friends. We tried to keep things as "normal" as possible, ie. family dinners which allowed her to talk to us. When her school counselor told us she was having trouble coping with her Dad's illness (based on what she read on the internet) her dad talked to her at dinner. He said, "no one knows how this disease will progress. It could be one year, ten years. Mom and I are still here for you. " It made her feel better. She improved in school a lot after that.

Her Dad died 7 months after that conversation. She is a trooper. Kids adapt. Be as strong as you can for them and they will come through. Hugs.

 

[Shane the Pain]

my idea

Dear Anne:

i have 4 kids ages 2 thru 9. we have NOT told them doom & gloom, only that "poppy" might get worse. we've had a therapist come 2 the house a few times, so i'd recommend that. there's no reason, in my opinion, to get them thinking now that daddy is dying, wait 4 that when it's really happening. my wife is a SUPER mom like you, try to let OTHERS help you, neighbors, friends and YES the kids too. i'm starting to fall down, i fell down today and my 2
older boys helped me home and cleaned me up. you need HELP and YOU deserve help.

much love,

Shane