New Member - Dad has ALS

[mrstadpole]

Hi everyone,

I'm new to this whole ALS thing.. literally! My dad was diagnosed about a year ago.. after a year of trying to figure out what was wrong with him. He is progressing quickly and is already in a wheel chair and scheduling surgery for a feeding tube. I don't offer direct care for him, as he lives over an hour away nad has wonderful friends who are taking care of him. But we do keep in contact via email, as that is the only way he can communicate these days. I have read a lot of the posts here (I guess they are called threads) and am very excited to know that I am not the only one who is scared and frustrated.. better yet, I'm glad to know that it's OK to be this way.

If anyone can offer any insight on preparing myself and my children for what is happening to their grandpa, I would greatly appreciate it. I am planning a huge family get together this weekend for him and I don't really know if any of us are ready to deal with what we are going to see. The man who was once called "Bear" because he resembled Grizzly Adams has now been reduced to eating tomato soup and mashed potatoes and he needs to have his chin wiped all day because he drools uncontrolably.

I want to make sure that we offer his as much support as possible without going overboard.

Thank you for listening. I am looking forward to making new friends. :-D

~K

 

[Al]

Hi mrstadpole. Sorry you had to come looking for us but hope we can help. The biggest thing I'd recommend to anyone visiting an ALS patient is that in most cases the mind is not affected. Treat them as you always have. The body may be broken and rusty but the engine still runs fine. Talk about the things you used to talk about. Here is a link about explaining ALS to kids. Hope it helps.
AL.
http://www.alsindependence.com/Telling_Children_About_ALS_MND.htm

 

[janf]

Hi I Agree With Al Don't Treat Him Any Different. Try To Keep Things Normal. Iwill Tell You That Most Als Patients Get Emotional Very Easily, Part Of The Disease. I Tell My Husbantd To Leave Me Alone Get Me A Wet Bath Cloth And Don't Console And Pity Me Because I Will Bellow Loulder. Try To Change The Mood Get His Mind Off Of It. Now, Your Dad May Not Be Emotional But ,just In Case Hope This Helps. Enjoy Your Time Together And God Bless You And Your Family. Jan

 

[mrstadpole]

Thanks Al & Jan! It sounds like I am doing everything the right way, so far. I am always focusing on the positive to keep his mind off the negative and I don't baby or pamper him. I make sure that my kids and I email often and we send lots of pictures and craft projects that we've done for him. I do what needs to be done for him and he does the rest.. he wouldn't even let me pick him up tomorrow.. he insisted that he ride the bus down to me. My first instinct was to ask, "how will you be able to do that?" and he immediately told me not to worry, the bus driver would help him on and off.. he will be just fine. I just feel like he took care of me.. now it's my turn to take care of him.

Al, thanks for the link.. I will definately check it out! I am so glad that I found you guys!

I hope you are having a great day!

 

[bdyle]

mrstadpole

After my diagnosed, I got my family togather and told them life must go on, I didn't want to be treated any different than before. I didn't want them feeling sorry for me, they might just have to get used to seeing me in a wheel chair or on a walker, but I'm still here and I'm gonna keep going as long as God allows me to. I will be praying for you and your family.

Billy,

 

[CindyM]

Hello mrstadpole, welcome to the forum. As you can see, there are a lot of friends here, both PALS and CALS, who can offer tips and support. Glad you found us! Cindy

 

[staten]

Hi mrstadpole,
My father in law (but absolutely a dad to me!) was diagnosed with ALS in May. since May when he could walk with a walker he is now in a wheelchair and ALS is taking over quickly. I truly feel for you and your family! - My kids are 10 and 12 yrs. old and they know what's going on with Grandpa but they don't realize what's to come. We've told them that Grandpa wasn't going to get any better and we just need to pray he doesn't get any worse. I agree with the above posts about the way we treat him. He definately knows we are there to help him with anything but we do not baby him. He has always been a talker and has a great sense of humor and loves sports. We still laugh a lot and joke around with him. A lot of times I joke about our past memories and we just sit there and laugh. When I do something to help him (which is everytime I go over there) I do it discretely and when it's done, it's done - I don't even mention that I did it but he knows. We talk sports all the time! We take him books to read about sports. We have fires in his firepit and have a few beers with him. That's what we've always done and we are still making memories with him.
He is having trouble eating now because he can't raise his hands to his mouth very well because his weakness in his arms is getting worse. I don't know what's to come either but I will say this - take it one day at a time and NEVER STOP PRAYING!