Old 07-04-2016, 01:19 AM #16 (permalink)
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Default Re: So not fair

He is doing it again now tonight. Saying no "come lay with me". But I told him I'm not doing that. So I closed my door and he yells thru his bi pap mask to come here. And then I get up and he says mean shit to me. Like "nobody should be treated like this". What cause I won't "lay with you" I'm the mean one? I just need to not go in there and ignore it. But he tries to get in my head. I'm so done with this ALS crawl. He is making me hate him, and I don't want it to end this way. Please help.
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Old 07-05-2016, 07:08 PM #17 (permalink)
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Default Re: So not fair

Tracy first and foremost you need to get to counselling and fast. You have to make that a priority.

Second, I need you to take 5 or 10 min and just acknowledge a few things, that your husband was DX with a terminal illness and he knows it, that he is thinking the he will never get to see his kids grow up, if you have any daughters, he won't be able to walk them down the isle, he won't see them graduate or any of them get married. He has lost everything he has ever worked for and loved and he won't have a life after ALS.

I know you are young. We were in our early 40's when this happened. I would and still do cry over the fact that my husband won't be able to walk our daughter down the isle or dance at her wedding. He may not even be alive to know that she even gets married. I know that wears on him and hurts him deeply. I also know that I now believe he has FTD. Many of his actions are because of the FTD, things he has absolutely no control over.

I also know that if a miracle happened and he was cured completely I don't know where or what our relationship would be. Being their caregiver changes you inside and out. I know it shouldn't, but this damned disease does that to you. The undiagnosed FTD nearly killed our marriage before ALS was even thought of. His own personality played into it, but I have to look back and see there was more, things I missed or accounted to something else. Yes, this is a relationship killer, but that doesn't mean that deep down inside they don't still love us and crave our touch, even if it's just a hug or a peck on the cheek.

I have to admit that sometimes I get so wrapped up in what I'm feeling that I tend to forget about what he's probably feeling. That said, none of us have to put up with abuse. However, we do still need to love and respect our PALS. While most and even some of those who have commented on other threads who have ALS, have told us that we need to think of ourselves and not say my feeling don't count, what about our PALS? It doesn't mean that we cannot and should not acknowledge their feelings and fears. Both of them count.

Hugs my friend!
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Old 07-07-2016, 11:00 AM #18 (permalink)
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Default Re: So not fair

Quote:
Originally Posted by Narrowminded View Post

I will say that my DH seems to like to ask for those things whenever I sit down to eat, bathroom etc, even though I inform him that is what I'm about to do. Not sure of an answer to that other than doing what I do and tell him he has to wait a minute.


Sue
I had to laugh at this one! I thought my husband was the only one who had this kind of timing!

Tracy500, I don't want to make light of this. I have been caring for my husband for many years, and I know the frustration. I agree that you might want to find a person to talk to about this. I haven't done it myself yet, but it is getting closer... Take care of yourself.

Last edited by sweetmozart : 07-07-2016 at 11:02 AM Reason: to add
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