the tension

[heavnscnt]

hi all....been awhile.....my husband was recently diagnosed with ALS.....to finally have an answer is somewhat a relief just not the one we wanted....so now its time to deal with it...and thats not easy.....hubby seems to be mad at the world and i can understand that but i don't know what to do for him....seems like no matter what i do or say he just ignores me....says he doesn't mean to but that is what he is doing....i don't know whether i am suppose to try to talk to him (which seems to make him mad) or just leave him be and risk him thinking that i am ignoring him.....its so frustrating...i don't know whether i am hurt or mad or whether to hold him or slap him.....how the heck do you get such an independent person to open up? do get me wrong about the slapping part i love him with all my heart and more but the bad mood days are hard....kids and i seem to walk on eggshells alot lately
thanks for listening and sorry for raggin on but its in there and needs to come out
i pray nightly for a miracle when it comes to this disease
have a good one

 

[Al]

No offense taken about the slapping upside the head part. Some days I want to slap myself. Still after more than 3 years of dealing with this I get snarly sometimes. I don't like myself when I do but it just happens. I'd just leave him to sort out in his own mind where he is going with this. It's hard on the whole family but as I try to explain to people that care to ask ,the fact is I'm the one that is going to die and I don't like that one darn bit. It takes time to get used to the idea and it makes you mad and bitter and these are emotions that most of us go through. Once we've had our pity party as one lady so aptly put it here then you get on with life. Hopefully he'll come around soon. AL.

 

[ladave]

The first few weeks after you get the diagnosed. are really hard. I cried a lot and spent hours on the computer doing obsessive research and copious posting on Boards like this. Gradually I just began "living" again. Now, seven months after my diagnosed., I'm pretty much doing the things I always did, except slower if they involve my hands

What I'm saying is- give it a little time.

 

[Kevinski]

Try and Talk

Hi I haven't got afinal diagnosis yet. The only good thing to come out of this mess is my wife and I have really gotten closer. THink its important to tell him that this disease is affecting you too and that your in it together and that it's important that he talk about how he is feeling whether good or bad with you. But I know how us males can think, just keep trying . I know its me that the disease is directly affecting but I know its crappy for my wife , Stay strong stay up and be happy Take care . Kevin

 

[paula B]

when i first found out i had als i also wasnt very talkative about feelings,,it wasnt so much i didnt wanna talk,,it was more i didnt know how i felt. Think about it,,when you go to the doc for a broken bone or something you leave there with a game plan how your gonna fix this,,with als they tell you there is no cure,,so when you leave the only thing you know is your gonna die. So much goes thru your mind. Ya think about money,,being a burden on your family. I say give him time to collect his thoughts and just let him know your there for him when he is ready to talk.

just my opinion,,hope it helps
PaulaB

 

[ronney525]

try to see if u can get social worker or some trained pro to come and help you both talk.the initial feelings for the diagnosee... are beyond comprehension. i used to just envision a non moving, non speaking body laying in aa bed.... what do u mean i wont be able to speak? what do u mean i wont be able to swallow? are u people all crazy?
and if i tried to explain anything i just cried and cried. about the best advice, be there, hold him when he cries, and take care of you too. it is a tough terrible road. but somehow you go on. good wishes