Old 06-23-2016, 10:53 PM #1 (permalink)
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Default So not fair

So not fair that he gets super mad at me and yells from across the room, for me to jerk him off. I don't know why he can't get off. But he punishes me for not sitting there for an hour or more to make him "get off". I don't want to do it. I feel disgusted by it, it hurts my hands and it's not fair. I wish I could move I cannot take his meaness for this Anymored. Help please!
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Old 06-24-2016, 08:58 AM #2 (permalink)
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Default Re: So not fair

Tracy, honey, you don't need to take that. Tell him plain and clear that you will not "help" him do that if he doesn't start showing you some respect. You are not his maid, nor his mistress and if he doesn't start treating you like a wife that he dearly loves that you will not do it. Yes he may get mad and angry and shout unpleasantries, but right now you are playing into his hands and letting him control you. Remind him that while he is the one with ALS, you suffer as well. You mentioned he punishes you, how so - verbally. Leave the room. Anytime he starts, leave the room. He will learn that he is not going to get any help if he continues.

All that said, if it is determined that he has FTD and it is causeing mental issues, then you need to get a med to try and help with that. If he refused to take it and can feed himself, hide it in his food. If you have to feed him, it's even easier to sneak in.

Remember, just because he is ill, doesn't mean you have to put up with abuse, any more than you should put up with a non-ill abusive person.

I'm praying for you

(((hugs)))

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Old 06-24-2016, 09:04 AM #3 (permalink)
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Default Re: So not fair

how about buying him a Japanese sex doll, turning on some porn video, and then leaving the room. i think that such would make him stop abusing you.
don't let him continue.
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Old 06-24-2016, 06:54 PM #4 (permalink)
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Default Re: So not fair

Yeah, that's a big NO to demands like that being screamed across the room. You should not be abused, period. Physical intimacy is a two way street--it's not a chore. I agree--leave the room when he rages and let him know that you just aren't going to be treated that way.
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Old 06-24-2016, 08:00 PM #5 (permalink)
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Default Re: So not fair

For what it's worth, this happens more than we'd like it to. And not just in FTD. Non-FTD male PALS have been known to be sexually...over-demanding yet unappreciative, to say the least.
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Old 06-24-2016, 09:32 PM #6 (permalink)
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Default Re: So not fair

Ok, no one in his right mind should be an ass-hat like that. I just can't conceive someone being like that without some form of dementia.
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Old 06-25-2016, 12:28 AM #7 (permalink)
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Default Re: So not fair

more seriously, if you agree that you have absolutely had enough of this kind of abuse, do you think that you can get advice or help with this problem from a third party who could counsel you on how to handle his inappropriate demands? having ALS/FTD or having side effects from meds is absolutely no excuse, and you must stand tough for the sake of your own health and well being.
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Old 06-26-2016, 08:32 PM #8 (permalink)
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Default Re: So not fair

We tried the thing where they asked him questions, I believe it was for mental issues but we never heard back. He has always been this way. He is a verbal abuser but doesn't believe that he is. He is on Zoloft already for it. Not sure what to do. If I leave the room, he yells and I wish he wouldn't cause it makes is voice go faster. I can't even understand him at all anyway. He refuses to use the eye game. Refuses the formula tube feeds. And wants food but chokes and he dont care.
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Old 06-27-2016, 02:26 AM #9 (permalink)
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Default Re: So not fair

Tracy if you have always lived in a relationship with someone abusive then really I would recommend you get to a counsellor and learn how not to fall into the role of victim as I think he has you all worked out. This does not make any of it your fault, but you need to learn to set boundaries and make some decisions on how you are going to live through this.
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Old 06-27-2016, 04:34 PM #10 (permalink)
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Default Re: So not fair

Tracy I too second counselling, so that you may get more sound advice than what we can do from a distance. Until that happens, I again suggest you leave the room close the door and let him scream away. When he finally realizes you will not answer to the yelling, he will quit. Once he quiets, then go back into the room. If he starts up again when you open the door, reclose it and walk away. No it's not easy, but your health and well being require it.

At first my DH didn't want to go all tube feeding either, but I reminded him that he barely made it out of the hospital after he aspirated scrambled eggs. I made sure he understood very clearly that taking food by mouth would bring about his death sooner, rather than later. If he can't make it to the kitchen to get it, do not bring it to him. Let him yell and stomp his proverbial feet. 24 hours w/o food won't kill him. By then he should be hungry and accept the tube feeding. If he doesn't have use of his arms, he can't really stop you. He can yell and you can feel like you are not following his wishes, but it's for his own good.

My DH doesn't like his cough assist and will tell the nurses no, but when I'm home I tell him well we can do this or you can get pneumonia again and I just do it. My DH has no movement left so he can't stop me. I know he doesn't want pneumonia and he will tell me that, so onward I press.

All this may sound harsh, but this is my opinion, you can take it or leave it - I won't be offended and I don't mean to offend you either.

In the mean time I will be praying for you.

Hugs,

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Old 06-27-2016, 10:20 PM #11 (permalink)
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Default Re: So not fair

Yes, I told him about eating and choking with aspiration. But he lets me do only like 2 cans a day, but should be on 6 full cans plus 35oz of water. He basically lets me do the 2 cans and then wants food about 4:00ish like late lunch/dinner. It takes about an hour to feed him the meal. Then he wants soda all the time,I'm add the thickner but even tat he chokes still. If I ignore him and close the door, he yells for hours it seems, and of I still ignore him he says I'm abusing him! Then he punishes me the whole next day and is a dick. Asks for his head itched, eyes wiped, nose picked to get boogers out. Clean his ears with q tips. It's like insane stupid things he makes me do, even thou he has no use of anything at all. He is like a big bobble head/bobble body doll, that yells with words that we can't even understand him anymore anyway.
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Old 06-28-2016, 09:34 AM #12 (permalink)
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Default Re: So not fair

Tracy, do you have any help caring for your PALS? It sounds like things are past the point of simple stress. What kind of care do you have? ALS Clinic? HOme health? Is there a case manager or social worker you can contact?
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Old 06-28-2016, 06:47 PM #13 (permalink)
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Default Re: So not fair

Tracy - the head itching, eye wiping, those things you need to do for him. I know you feel like they are punishment, but they are not. imagine if you had an itch and could not scratch it. Those things are very important things. The sex stuff, not so much. Feeding him food or drink that he is choking on is also not good. Remember, the next day after the door, you still don't have to put up with abuse. General care you do need to do.

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.

Hang in there and do get support from someone. Call the clinic and find a social worker if you don't have one.

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Old 07-02-2016, 08:11 PM #14 (permalink)
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Default Re: So not fair

Each morning and before bed I would wash my pals face, get the teeth brushed, and clean his ears. He was just more comfortable. If he had dry itchy skin I would rub in lotion. The sexual side was not existent. He lost that ability before diagnosis.

I would not put up with his demands. You have a choice, you are choosing to stay and deal with it. You can sče a counselor, find hospice that is inpatient,, look for outpatient care, ask members of your community for help, etc.Sick or not, I would not put up with abuse from him. You can leave.
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Old 07-02-2016, 09:13 PM #15 (permalink)
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Default Re: So not fair

I must second Gooseberry - you do not have to put up with that, there are choices. I did health care in my 20's and 30's, I know how difficult it is even though my pals is still in good shape. It is stressful, and there is no need to put up with abusive behavior in the bargain. Dementia is another thing. My late father in law was a beast to his kids in particular when he was dealing with dementia and had no clue what he was doing. However, you say your husband has a history of abusive behavior. Thats different entirely.
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