Caring for a spouse with small kids

[ValleyMomma]

My kids are 8 and 9 years old. Thinking about the care involved as the disease progresses. How do you handle this?

My husband has the disease and he is not sure how much he will want the kids to see.

Thoughts?

 

[Barbie]

I am so sorry! I think I saw on another post that your husband is a fals. so he really knows what he is dealing with.

I don't think you will be able to hide anything from the kids as it goes along, but you should look into a counselor for them. I know my youngest were 11 and 12 when their dad got it, and it was tough. I remember vividly my 13 yo asking after about the first year, when is daddy going to start walking again...that was when we told her never. sigh.

My kids have seen and done things they never should have because of this crappy disease. Over all, 3 of the 4 are ok with it and it is just part of life. the youngest sees a counselor and has had a lot more trouble handling everything.

I work my butt off trying to keep their lives somewhat normal--dad can not always come first ( but he usually does, lol). overall, I think kids learn compassion from seeing their parents face als together.

 

[Plumeria84]

Yeah, unfortunately you really can't hide the disease from them. There will come a time when your husband will require more attention and they'll notice.
Like Barbie said, really, the only thing you can do it try to spend some one on one time with them.

If you have someone who's able to help your husband for an hour or two just go out and do something with just them where you aren't worrying about taking care of anything for PALS.
It's important to get out as a family if that's still an option but just you and the kids is important too.

Our son is only 4.5 so for now "daddys sick" has been enough but I know as they get older you do have to explain more and I'm sure counseling is a good idea at that point.

I'm sorry you are dealing with this ...

 

[Laffy130]

I have the same concerns. I have an 8 month old son. I am his mommy and my ALS is taking away my ability to walk. My concern is that I will not be able to care for my adorable baby as he will eventually be more mobile than me. I have a very proactive and caring husband that I know will help, but it pains my heart that I will not be able to be the mom that I always thought I could be. God is giving me the grace to accept what is happening to me, and I know He is in control.

 

[ValleyMomma]

Oh Laffy.. I wish I could trust in Him as much as you do. Really wish i could.