Venting

[ccordone]

My husband has been diagnosed with ALS in December. Most of the time he is pretty good, but some times he get mad with frustration and yells. I understand but sometimes it hard to be everything. A wife, chef, cleaner, dentist , mom and still have time for me. He doesn't understand that I can't always be good at everything. It its hard for me to work but I have to for insurance and money. Out nearest family is 1200 miles away. Just need to vent, Thanks

 

[Santa joe]

Please join us on the "pity party" thread. You're not the only one venting.

Debbie

 

[John1]

Hah! I came here expecting to read something new on vents. As Santa Joe says, this thread could find a better home elsewhere.

 

[MaxEidswick]

>Hah! I came here expecting to read something new on vents. As Santa Joe says, this thread could find a better home elsewhere.

HAH! Me too… The pity party thread seems appropriate

 

[ccordone]

Thanks, new this and will move

 

[Santa joe]

That's ok - thought the "Pity Party" site would be a good place for you to go. We vent, cry and even laugh. I couLd not go through this journey/nightmare without it. You will interact with so many wonderful CALS who can relate. After you start reading the post you will see that you are not alone. Welcome.

 

[GregK]

Hi Ccordone,
It may well just be (and hopefully is) the frustration/anger/despair all PALS feel but you should be aware of FTD which is a nasty dementia associated with ALS; scan thru the FTD forum.

good luck, and you are not alone. 8^]

 

[next coca cola girl]

I understand completely I have ALS and it seems like my husband is the hardest one to understand my speech. I get so frustrated so I started writing it down on my boogie board. But when we get into an argument he doesn't give me a chance to even write.He thinks he's in the dark on everything.Which he probably is beings he doesn't have the patience to let me speak, I mean write. Besides my husband, when I go out in public and try to talk they think I'm retarded or deaf. I've now take my boogie board with me everywhere.They still think I'm deaf lol.

 

[MaxEidswick]

>I have ALS and it seems like my husband is the hardest one to understand my speech. I get so frustrated so I started writing it down on my boogie board. But when we get into an argument he doesn't give me a chance to even write.He thinks he's in the dark on everything.Which he probably is beings he doesn't have the patience to let me speak, I mean write.

I really am convinced the CALS have it harder than us ... I can't imagine the frustration of dealing with me. I get short, rude, with Sandy when she doesn't hear/understand me thee first time ... like it's her fault!

 

[zoohouse]

My husband is far more patient with me than I am with him, when he doesn't understand what I am saying. I wish he would wear his state of the art hearing aids, and sometimes he says that he will lend them to me. My favourite is when I say something to him, and he says the same thing back like he was the one that brought it up. Well I guess it means that we are on the same page, anyway.

Paulette

 

[MaxEidswick]

>My favourite is when I say something to him, and he says the same thing back like he was the one that brought it up. Well I guess it means that we are on the same page, anyway.

That started with Sandy about 35 years ago, but I always have to preface with 'what?' -- she is *very* soft spoken. I, OTOH ...

 

[zoohouse]

The problem is that my speech can be a bit soft, but when I repeat myself a little louder it sounds angry and loud, and then he is hurt. Honest there doesn't seem to be an in-between. We often find ourselves thinking the same thing, that has nothing to do with what we are doing at the time. Like I said I feel we are an extension of each other. Inside of Tim's wedding ring I had engraved " I am you, you are me, we are one."

Paulette

 

[MaxEidswick]

>Inside of Tim's wedding ring I had engraved " I am you, you are me, we are one."

I may do that on the inside of mine for when I have to pass it back to her. Thanks, Paulette!