So hurt

[Tracy500]

I cannot deal with my pals anymore. I cannot take this treatment he gives me, it's been almost 2 years since his diagnosis and I am finally getting away for the weekend. I have been training his mother and have him all set. He keeps putting me down, and making bad comments to me. I'm upset and hurt that my husband treats me this way. I need someone else to take care of him, I want to go back to work. I only get a few hours 1 day a week away from him and it's just like groceries or something. He is more needy than a newborn baby. But with a bad attitude. I don't know of anyone else with ALs that is this da,n needy and so mean to the point where I cry myself to sleep at night. Not b/c he is dying, but b/c I quit my job that I loved to spend his last days, months, years with him. But for what, to be treated this way, walking on egg shells all the time. Please don't comment on my post if you are in favor of the PALS, b/c they still are people and have no right to treat someone this way. Esp. A wife who takes the best damn care of him that I can.

 

[affected]

What are your options Tracy?

Maybe once you get some time to yourself on the weekend, and have had some sleep you can start to think clearly of some real strategies.

Caring for a PALS is far more than a one person job. I know he is being very hurtful, my husband had FTD and he was very nasty to me too. Somehow you have to find a way to separate yourself from the things he is saying, draw some lines of boundary with him and let him know that certain things won't be tolerated anymore.

So much easier said than done I know!

 

[Narrowminded]

Tracy - it's been 11.5 years since first symptoms with my husband, even after all of that time, I have no words of wisdom for you. The only thing I can do is send you virtual hugs and let you know I know exactly how you feel. What I have done, and will do is walk out of the room. Generally what they need in that moment can wait and if my husband is mean, I walk out and make him wait. I reward his "good" behavior with doing what he asks. Doesn't always change things, but it helps me to cope and diffuse a tough situation. This time away will help greatly. (((hugs))))

Sue

 

[SKlocinski]

Tom was just diagnosed in February so I haven't been dealing with this as long as some of the others here. He is not mean to me but he tends to be a bit bossy (always been that way). I learned a long time ago to "pick my battles". But every once in a while when he gets that way, I give him the evil eye and say "So, who died and left you boss?" I've always done that and I continue to do so. I have also told him that just because he has ALS that doesn't mean he gets to boss me around. Seems to be working so far...but then we are not talking about meanness here. Mostly just frustration I think.

 

[gooseberry]

Remember, your spouse has options and so do you. Your health is also important. If he doesnt have ftd then there isnt an excuse. Do you go to clinic with a social worker? Xan you go back to your job? Can you get home health? I would call clinic and see how they can help you. ALSA has respite grants. I would apply for one.

 

[affected]

I hope Tracy is OK as she hasn't logged in again since writing that post 6 days ago.

 

[soonerwife]

I hope so too! We are thinking of her!

 

[Narrowminded]

Tracy - praying for you!

 

[Tracy500]

I can't go back to work as I have 3 small kids, and one isn't even in school yet. My husband And I always worked it out. But it's like being a single mom now with an adult infant too.

 

[soonerwife]

I can't imagine what it would be like to have young children and deal with the monster as well. I wish I had some words of wisdom. So sorry it's so hard! Hugs!