Ashley,
My son just turned seven in July, so being he is a boy and younger than your daughter, he is not as mature.
We have told him that his dad has an illness/disease that makes him very tired. He has already witnessed two broken feet , a broken leg, and a very unpleasant "not being able to swallow saliva" episode. He took this all in stride. I've taken him aside on many occasions (because he just doesn't understand why daddy said he would do something with him but now cannot due to exhaustion) and explained again that daddy has ALS, a disease that no one can catch like a cold, but that some people get and we don't know why. He just says "oh." So you can't really tell what it is they are absorbing. We even took him to the last appointment at the ALS clinic. He watched with interest, but was more intrigued with my SIL giving blood! (That's a boy for ya!)
Anyway I would advise against any mention of major issues or death. If you think about it, it is hard for an adult to grasp the meaning of this disease, so think what a child must understand or not. Most likely she will start asking questions as she gets older.
I fortunate this year because the counselor at my son's school lost a sister to ALS
and she completely understands our situation. So if you can speak with your daughter's counselor at school as well as the teacher and administrators involved in her education, it may be of some help. At least they would be able to observe any problems she may be having while at school.
There is something online for kids that explains the disease in scientific terms on a kids level, but it really would be over my son's head right now. It's on one of the ALS sites, can't remember which. Also there is a workbook for children thru teens for children of PALS on the Georgia ALS site, but frankly I haven't bought it because $25.00 for a child of a PALS just doesn't sit right with me. I hope I have enough intelligence to help myself and my son through whatever this disease throws at us
without the help of some psychologists book! Sorry this is really a pet peeve with me...PALS are suffering enough without someone charging for a book. At the least the ALS association could ask permission to cull some of the major points out of the book and give this to PALS free. Then if we wanted to invest in the book so be it!)
Well, I wish you luck with you daughter and your husband. If you have any feedback on what I've said good or bad feel free to comment.
Mary, Mary, Mary...
Girl you are gonna burn yourself out! I bet if you were firm with your Dad and explained that you have confidence in him (just like you would do a child) and train him on the chores (those that you know he could do) then I bet he might just step up to the plate. But I am not you, so you Know your Dad better of course than I.
Your mother is still angry and may not be able to move on right now. I know my husband can't at the moment. Are there any close friends/neighbors you could enlist? And what about the ALS Assoc. have they been any help? I have the opposite problem: Do I find a job ( we are still fighting his disability ins for the proper payout) cause I need insurance? Or will I get a job and have to quit due the task of taking care of my husband?
Got to go. Good thread.