Caregivers with Young Kids

[GalFriday]

Are you a full time caregiver for someone with ALS and kids in the home? I would like you to share your strategies. The world of ALS is not new to me unfortunately with an aggressive form of familial ALS.

We have kids in elementary school and anticipate a rough ride. We have been in contact with our local hospice and are doing quite well so far. Still at the early stages of the disease.

 

[SMP51]

My granddaughter is in and out of our house a lot. Our daughter decided the simple honest approach was best for her, she is 7. Grampy has a illness that is making his muscles not work and one day he will die from it, not today or next week or next month but he will die, so always be sure to hug him and spend time visiting, always be nice, just think how you would feel if you were sick all the time. yes you can sit in the cool new wheel chair.....
We try to make things normal and not scary so the medical equipment is not off limits to her, all questions are answered simply and honestly. We try to find fun in things, like that she can tickle his feet and get away with it, that he can read to her and watch her favorite movies or some old ones she wouldn't have thought of, like the old Lassie movie. and she "helps" him on her level of what she can do, not chores of help but those things which make her feel she is contributing when she is here.

this is what has worked for us, I hope it helps as you figure out what will work for you

 

[poppies]

Hi there. When my husband was first diagnosed I did a lot of research on the internet and found a few websites and articles on talking to children about terminal illness. I found them very helpful as the advice was different for children of different ages, especially moving into the teen years. I followed the advice, and still do for my teenage girls and have found it to be very effective. I would suggest you try to find a quiet moment and spend some time doing your own research on the internet that is aimed at the ages of your children. I feel it is well worth the time spent as it gave me something positive to focus on so I felt less out of control where the children were concerned. Wishing you well...

 

[zoohouse]

GalFriday; Welcome from another Canadian. Have you contacted the BC ALS society yet? They have a really cool summer camp for kids with a family member who has ALS. It is fully funded by the ALS Society, and is about 4 days long. They even sent my husband's son who is from Texas last year. He came out 1 week early to visit his dad for the summer, and they flew him from Kamloops to the camp, and back to Kamloops. He is a bit of an awkward kid, but they really did so much to make him feel welcome, and he made friends. The camp is in July I believe, but give them a call. They also have a ton of literature, videos, and books for the kids.
Paulette

 

[ottawa girl]

Try " hope loves company" . Site is dedicated to young ALS families. Great resources. Also a couple of books geared for children and which explains ALS. I understand they've been well received and helpful.

 

[Wildemom]

How old are your children. Our children are 14, 11 & 9. Each handle things so differently it is sometimes hard to know which one to help first and whether it is affecting them like it may be affecting another. One gets angry, one cries and the other hibernates. I think honestly is the best way. I give my children the truth in small doses so they have time to absorb it. Our children see a counselor one on one and sometimes with their siblings. I have spoken with the MDA coordinator and she has put us in touch with other children who have been down this path. They can talk with them or email them when they are ready! Our school has a social worker that meets with our children. Sometimes she joins them for lunch or catches them in the hall and chats with them. We are very fortunate to have Aunts and Uncles and I every once in awhile I give them a call and have them take them out for a special night and let them tell their thoughts to someone other than me. As my husband declines we see our children get sad so I try and get them ready for that in the best way I can but it doesn't always for out the way I hope. There is a book I had given to us for younger children but our 13 year old at the time read it too is "Lou Gehrig, The Luckiest Man" was a good read!

 

[GalFriday]

Thanks for the information. Very much appreciated. My kids know the full story, but have decided they do not want to talk about it or be reminded anymore than they have to. This is perfectly fine and I tell them to just let me know if they have questions. Has worked out well so far.

My oldest, 10yrs old, has started telling her friends a little bit. Not excited about that, but am happy we have some awesome families in our community.

 

[GalFriday]

Oh my goodness.. so many ads on this website! Frustrating!

 

[affected]

I don't see any ads at all?

 

[Barbie]

the ads are there if you are not logged in. usually limited if you are signed in.

my kids were elementary, middle and high school when my husband got diagnosed. each age group has it's own difficulties, but the good thing was they had each other. they would talk to me about their dad, but not a lot unless the 5 of us were going someplace and having open conversation (like a long car trip). I think they all would talk to their friends about their dad, especially if they invited friends over. I have found that kids seem to be more open and accepting of my husband then many adults LOL.

My kids saw a therapist also, and I think it helped. Especially in Elementary age--they don't really understand what is going on or their feelings, and it can be so scary sometimes as the PALS progresses. I just noticed you are a FALS...I think counseling would be wise as they will be also thinking about their own health and may feel guilty or angry.