drinking

[epkennedy]

AHHHH I'm extremely frustrated... my PALS is drinking tonight... granted I have to pour it and help him get it in his system. He takes it straight up through his feeding tube and drinks a few sips of soda after. I have tried diluted it so he wasn't getting as much at once but then he would just ask for more. I'm very torn- I want to give him what he wants but when it comes to drinking I: a) can't understand him AT ALL b) have to help him pee more frequently (at night) c) he is much more difficult to move when his already stiff body is like jello (its hard to explain).

OMG!

 

[Iloveocean]

Ernesta,

one of my young veteran friends drinks and he does not have ALS. It is SO frustrating to see him drink his life away. This guy has so much potential it's not even funny and he is wasting it all. Now you on top of that have to suffer because of the effects alcohol has on him... Addiction on top of ALS... OMG... Should you seek some type of treatment for him? I think that you've got your hands full never mind alcohol!

 

[laurel]

Ernesta he likely wants the liquor to help him feel better somehow i.e. mellow, calm, to escape his feelings. Perhaps you could talk to his doctor and see if medication could be ordered to help him deal with the feelings he is trying to escape? Maybe something given for anxiety and/or sleep after you get him settled for bed. I think I might want to stay drunk if I had ALS.
Laurel

 

[epkennedy]

Yes, Laurel he uses the alcohol to escape. He has different meds to help him feel calm, relaxed, and to sleep but he still doesn't sleep well. Major shoulder and hip pain so he asks to be moved every hour to hour & 1/2 during the night.

its been a tough night. I went from feeling so mad at him to feeling severe guilt for giving him a hard time. He is the one dying, after all. Man. Everything is so complicated and exhausting.

 

[laurel]

Ernesta you are doing your best and I know you are exhausted and frustrated. I admire you greatly for what you are doing. Please don't feel guilt as your feelings are so natural and he knows how much you are doing and how tired you are. I will say prayers tonight for you and your husband. Maybe the doctor could order something stronger that would help the shoulder and hip pain. Here in Canada you can buy Voltaren emulgel cream at Costco which is an anti-inflammatory cream. My hubby has CIDP (a neuromuscular disease that causes nerves to demylenate and cause pain) and he can't live without rubbing in that cream into his legs at night. Best of luck and hugs to you.
Laurel

 

[LizT]

I dont want to make an excuse for your hubby to use alcohol and all- but maybe you guys could find a middle ground? Say he has to be pretty much ready for bed before the drinking happens.

have you guys looked into condom catheters? Not even just for the drinking aspect, but this way you wouldnt have to get up to help him and he wouldnt have to really wake up too much to pee. Its just like a condom, but the end is open and that has a tube that runs down to a bag...

Its understandable why he may want to drink. and he should be able to on occasion. but if you are seeing this as a true problem, then you may need to start exploring your options. JMHO.

Oh, and please try not to let yourself feel TOO guilty. You shouldnt at all, but in all reality, we all do. Yes, he may be dieing, but that doesnt give him the green light to make things so much worse than they have to be.

Hope you get some rest tonight.

 

[10steps]

Look into the condom catheter...he'll be less dependent on you. It makes daily life more simple. That will help with the peeing thing. My husband drinks too, now he drinks less because he cant drink fast out of a straw and chokes; that doesn't mean he never puts down 5 beers. Yeah, it makes things harder when you use the spasticiy to help with movement and the PALS becomes total dead weight. My husband is pretty much "locked in" so really he's limited in what he can actually do. I'd rather kick back on the deck and drink beers with him than stare at NCIS. Maybe next time invite some friends over and have a party LOL. Its all hard.

 

[mommagoose]

I would suggest later before bed also. My sister drank wine too. Remember the mind is still clear. I am sorry you are frustrated but seeing my sisters condition I would drink too. I would find middleground too. It is their life. Sorry I am no help and my heart does go out to you and your frustraton. Als is not a friend. Hugs

 

[Atsugi]

There is no middle ground to find. Alcohol is addictive. That's why he won't let you dilute it. His mind perceives that he needs it to be "normal" inside.
With an old soldier, there's more going on in his mind than you might know.
He might consider replacing the alcohol with a different medication--his doctor might help with that.

When I succeeded at controlling my alcohol, it took strong motivation, lots of support, and over a year to replace the alcohol with mixed drinks, with food, with sex, with work, with hobbies, and finally, just normal life and I was dry.

But with ALS, his internal self will have a hard time finding a strong motivation. You, as important as you are, are an external motivator, not internal.

In short, maybe overwhelming him with copious amounts of random sex acts will do the trick.

I wish you good spirits and good fortune with this issue.

( And be sure to let us know what works. I, for one, hope it's the sex-cure )

 

[epkennedy]

Thank you all who posted to this thread. This forum is such a fabulous resourse & connection to so many wonderful individuals who 'get it.'

Feeling blessed!

 

[notme]

HI

Normally, if possible, anyone who is pretty much bedridden should be turned every two hours to keep them comfortable, and to prevent bed sores.

As for the drinking--the thing that would concern me is if he's mixing it with pain medications or benzos which could suppress his breathing. If he's in pain--they can and should be prescribing him pain medications.

There are various positions he can lay in if they don't affect his breathing. On the side, one arm above the head and the other over the waist with a pillow under the forearm. Pillows between the knees, with them slightly bent. Be sure when he's on his side, he's not "straight" on his side. The lower shoulder should be slightly forward to alleviate some of the pressure. Positioning is one of the hardest things to teach my CNA students.

Perhaps a mattress could also help with areas that are getting too much pressure.

If the alcohol is a chronic daily thing that makes it harder for you to help him--tell him. But, ultimately, you're right. He's the one with the disease--and if that is an escape that makes him deal with it--you'll have a hard time stopping it. If it's just an occasional thing, as long as he can use a urinal or condom cath--perhaps it's just something to deal with.

Good luck to you!