Old 08-20-2015, 01:52 AM #1 (permalink)
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Default CAL needs advice from PALS.....

Emotions!

General counseling does not understand this disease or the people involved.... This is not text book.

So I feel I need help from those that truly understand.

My PAL/ husband, is very distant most of the time. Sleeping or drinking to pass out, or taking his mess to pass out. He barely takes the formula in his PEG, He still walks and does things for himself. I can understand him when he is sober, but I hen he drinks....good luck! That's also hen the falls happen. Both sober and drunk he has a tendency to snap at m. Say things in a rude way... Like how I'm stupid, or a dumb *****... If I get upset half the time he will apologize and try to explain what I did to make him say that, or how he should of handled dealing with me better. He's biggest complaint besides the disease it's self, is the exhaustion he feels. Takes too much energy to take a shower. Things like that. Of course he wishes he could still swallow food!
Now for the more personal side of things, he wants me to be more sexually assertive. He says he is sorry for not being able to please me, but he gets pissy, and irritated at me if I'm not being subservient. I feel guilty like I'm depriving him of something he may one day lose. But the flip side is I am a strong woman who believes and requires respect. When he is sloppy drunk, no I don't want too, when he belittles me, no I don't want too.... So I am in between a rock and a hard place, no pun intended! Is it the disease, should I turn the other cheek, forgive and give ? I get upset thinking he could step up and do better for himself, and that he is helping the disease progress, I'll admit that makes me distance from him. Should I learn to accept this behavior as it is his life, in the end he will have lost the time and life that he drinks and sleeps away? I know I sound harsh, I may have been make a few of you mad. But there it is all my heart layer out on this page!

Thank you,
God Bless
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Old 08-20-2015, 03:56 AM #2 (permalink)
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Default Re: CAL needs advice from PALS.....

I'm going to ask Nikki to get a pm through to you for me.

Thank you for sharing this, how hard that would have been!
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Old 08-20-2015, 05:02 AM #3 (permalink)
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Default Re: CAL needs advice from PALS.....

You were painfully honest, so I will be, too. From your posts, it appears your husband is an alcoholic.

You asked for a PALS opinion. I'm not a PALS, but I do have some insight. My wife died of ALS in 2011. I've kept closely in touch with CALS and PALS since 2010. During my time in the service, I've known many alcoholics. It was once my duty to determine who went to rehab and AA, and who went to jail. I was an alcoholic myself a long time ago. (I disagree that a person is an alcoholic forever. Addiction, like most illnesses, can be cured. But that's another debate.)

From this forum, I've been privy to several stories of men who didn't meet the emotional requirements of this disease. They verbally and emotionally abused their wives. Some marriages have broken up early on. One wife told me that her husband demanded sexual favors but then wouldn't express any love or appreciation to her. That really hurt her.

Is this misbehavior actually a dementia caused by ALS? In this case, I doubt it even matters. Is he an alcoholic? Would you say he's being emotionally abusive?

You can ask an ALS specialist if the pattern fits FTD (Frontal Temporal Dementia) and ask for medication and therapy that might minimize it.

I believe it's your choice whether to stand by him or to demand a change--which, as an alcoholic, he can't do. In my mind, he really can't make a lot of choices because he is wracked by two diseases--ALS and addiction. You, however, do have choices.

Now I'll say the part that will probably anger everyone. If treatment and therapy do not improve his behavior, then you might choose to make the needed change by leaving him. (Give him the opportunity to choose a facility to care for him.) You do, after all, want to limit the number of victims to one. Or you might decide to fight both the ALS monster and the addiction, get as much help and therapy as you can to maximize your ability to take the abuse, come here to vent and rant and seek solace, and carry on giving him whatever he needs to get by until the end.

As I've never been in your shoes, I might be completely wrong. I hope someone else has better advice. In any case, you're always welcome here with even the hardest and most personal issues.
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Old 08-20-2015, 05:32 AM #4 (permalink)
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Default Re: CAL needs advice from PALS.....

Thank you for your time and honesty.
Yes he is an alcoholic. You are right, I do have a choice. Some people may think I'm a gluten for punishment for staying in a relationship with an alcoholic. To this point that is a decision I have made. Thank you as well for still being open to my posts and rants as well. I know my situation is a bit different then others. But with ALS our worlds are turned upside down and inside out. So in some ways I am seeking advice on different things on how to better deal with the current situations. I have to say it sucks, both diseases..... I have known him sober, very loving strong man. A mans man some would say. Drunk, well sloppy man. I have seen him strong and happy, with desires, hopes and aspirations. Now I am seeing him broken down, and beaten. I think in traditional marriages so many couples don't really get to know there mate so well. Some people call it normal life. I guess I have never really had a normal life. I have always been the type to see inside of people and want to help and love them.
So on the point of my post, I have re read it as well as your reply. What I have come to is this....
He married me for who I am. A strong willed woman. So if he gives me grief, I'm not going to become subservient . It is not who I am. Just because he has two diseases does not allow him to make me a victim. If anything it should make him realize my strength and love for him. In turn he should want to treat me in a loving and caring way! If he still insists on a subservient women, he can go pay for that! That is not who he married!

Thank you again,
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Old 08-20-2015, 06:04 AM #5 (permalink)
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Default Re: CAL needs advice from PALS.....

Fair enough. Good luck.
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Old 08-20-2015, 07:49 AM #6 (permalink)
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Default Re: CAL needs advice from PALS.....

Chumpy, I am so glad to see your last post (I just read the entire string to this point). Mike offered wonderful advice, and I'm glad to see you standing up. I, too, have know both diseases. My first husband was, and is, an alcoholic, and now the love of my life, to strongest and most giving man I have ever known, has ALS. That you are dealing with both in one man makes my path seem much easier. If FTD enters the picture also, you will need all of the strength that you have, and I have no doubt that you have great reserves of that attirubute.

The "poor me" of an alcoholic now REALLY believes it has justification, and these two diseases in one, well, wow. So I applaud you for not allowing that guilt trip to be piled on you. If you stay with him you can always walk out of the room. People here don't judge, and I think you will find that even those who haven't seen alcoholism up close will offer you more support than you could find anywhere else. When you are able to PM, please keep me in mind if you'd llike more private conversation, or get my email from Tillie since I see she working to get a private message to you.

You are so right--he needs you to be you AND you need to protect yourself so that you can not only care for him through this but also survive this ordeal and face the next phase of your life as intact as possible.

We'll be here for you.

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