This Heat Does it effect the ALS Patient

[wewillbeatthis]

Hello Everyone,

We had a really good couple of weeks and now we are dealing with this heat in our area and dad is back to being grumpy, negative, and nasty.... Last night I made sure he had some ice water, ginger ale, homemade meatballs, sauce and some pasta.... He ate really early even like he likes 7:30pm he was done and resting watching TV by 8:15... By 9:30 he was so mean and cranky we got into a yelling match... Then of course he was hot and not tired according to him and did not go into bed until 3am and woke up at 7:30am.... Then came in the call from one of the workers that they need compound... Wow was he mad and another argument again... I said dad you are getting mad about such little things and deterating your health because of it. "I don't care was his response" sent me to work crying....

I don't get it we actually exercised upper body last night... First with reg kick ball throwing up and down and catching did great, throwing with right and then with left did great.... Then clap and catch great.... Then we did the throwing and catching with the 4 pound med. ball and that was great as well. Both sitting and standing... Then within 2 hours he turned into a cranky monster no other way to say this.... What is with this and how do I handle it without saying anything rude that will hurt his feelings and our make me feel bad about what I said?

I mean honest I am not trying to minimize what he has... Dad deals with his walking which is not good and off balenced and I feel bad about this.... Once and a while some slurred speech and a horse voice.... Talking a bit slow.... Then also not all the time but due to his spasisty his hands can get a little clumsy when dealing with fine motor skills like spinning pasta on his spoon.... So how do I tell him dad your doing great don't get mad about the little things? Like spilling water cause you bumped into the table, or forgetting to pick something up at the store....

Please HELP!

Jen

 

[quadbliss]

Hi Jen,

I don't know if this can work for anyone else, but I remember what began to turn me around and made me try to become a better person. I started to contemplate what would be said at my funeral and how people would remember me. It was then I began to realize I could turn this thing around and use it to affect the world in a positive way. We have a choice. ;-)

Your friend,

Mike

 

[Al]

Hi Jen. The heat may be affecting his breathing and that could be scaring him. Also winding pasta on a spoon makes him realise that he is losing his functions. Some people can deal with this but if I recall correctly your dad hasn't accepted this very well right from the start right? It might just take him longer to accept all this. Hopefully he will before you end up hating him. Try to hang in there and when he is miserable just walk away. Maybe if he see's you won't take his abuse he'll calm down.
AL.

 

[wewillbeatthis]

Hello and thanks for the responses....

Al dad does not take anything less then perfect very well. He has been like this since birth is what I have been told. I can deff. agree that he has been like this since I have been around.

His breathing is fine this is not a concern.... His fine motor skils this is a true fact. His fine motor skills in his left hand have been touch and go for the past five years.... So like you say when it is a bad day it gets to him... Good days he is great to be around.... So I have done what you and many others in the family have said. When it is a bad day walk away and say if you need me call me otherwise see you later when you are happy.....

I will never hate my dad... I always love him on good and bad days. However, on good days I LIKE him a bit more...

Seems to me that with dad when all is good and he is happy he is 95% all over if not better....

On a bad day he drops to about 90% in some areas and 80% in others....

All and all he is good and this is all I pray for that he remains good...

Thanks again for your response.

Jen

 

[CindyM]

When it is a bad day walk away and say if you need me call me otherwise see you later when you are happy.....

Jen- I like that idea! Mind if I quote it once and awhile? Every time you are abe to carry it out is one less time you will feel the need to beat yourself up for yelling at him. regards, Cindy

 

[AAA]

I love the heat!

I find that the heat helps. I just returned from MN, where it is supposedly 'HOT.' I had to where a sweatshirt everyday, especially when going into an air conditioned building. My body relaxed considerably when I returned to AZ. Not everybody has that luxury. When I lived in MN, I would pile blankets on the offending limb until the pain lessened. In the winter in MN, I would wear long underwear, polyester running pants, a t-shirt, a sweatshirt, and sometimes a flannel shirt. and this was just in the house. When I would go somewhere, I had to add snowpants. Jan. of 2006, I had the opportunity to move my family, my brother-in-law, and my in-laws to AZ. The move has been good for me.

Angie in AZ