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odessa

New member
Joined
Dec 29, 2014
Messages
2
Reason
Lost a loved one
Diagnosis
10/2014
Country
US
State
California
City
Kelseyville
Husband has been an alcoholic, has bulbar als, i thought it might be ok for him to have a drink now, since it makes him feel better, and helps him eat. Now i think I've made a mistake. I just dont want him to suffer any more and was willing to let him have whatever he wanted. But when i go to work, he takes off in his car and buys alcohol. He is really severely drunk tonight, and i don't know how to take care of him. I hid all the car keys. that's a start.
Also thinking about starting hospice care, not sure how to get started. I want them to give him whatever helps him not suffer.
He has also indicated he wants to go to Oregon to have Death with dignity, assisted suicide. Don't know how to do that either. we live in California.
He was diagnosed with ALS October 2014. It has progressed fairly rapidly i think. He can still walk, but has problems breathing and swallowing, and lost ability to speak.
 
I'm sorry. I know that's a tough situation. I think that ensuring your husband doesn't drive while he's been drinking is crucial. Also, if he is drinking, his decision making skills are not the best.

You need a doctor's referral to sign up for hospice. Their goal is to keep him comfortable. The traditional standard has been that doctor's give referrals when they think the patient has 6 months to live. However, sometimes with ALS patients, they don't adhere to such a rigid timeline.
 
The alcoholism is a problem. It's difficult for an alcoholic to limit himself to just one or two drinks. Will he agree to a limit that you control?

The Oregon "death with dignity" people are at 503-525-1956. Their web site is at compassionandchoices dot org. I called them once and they indicated that they have helped ALS clients in the past. Good luck.
 
The excess alcohol could be a problem for his liver if he's on Riluzole.
 
Odessa- I'm so sorry you are dealing with these problems. Obviously, I'm sorry for your husband who has ALS- but you are a victim here too. It would be a miracle if your husband quit drinking and had the remainder of his life to spend sober. Miracles happen. I don't say this casually- because it is not my style at all, but I will pray for you.
My husband was an alcoholic- and miraculously, he quit drinking 14 years ago when he was diagnosed with hepatitis C . It saved our marriage and family- a blessing in disguise. Now, perhaps as a return favor, he took the new hep C drug Harvoni, and is 100% cleared of the hep C virus. He opted not to take any of the other cures that came up in the last 14 years- but Harvoni seems not to have side effects like interferon treatments. And it worked.
There is no miracle treatment for ALS, but maybe as a result of the disease, your husband will quit drinking, and you can have some peace at this point of your marriage.
Good luck!
 
Between the ALS and the drinking, the last place he should be is behind the wheel of a car! you are right to hide the car keys. I feel so bad for you. He may be hoping that he will have an accident and be killed--sort of suicide. but if he were to get in an accident and hurt some one else as well as himself (which would be highly probable considering the two factors) how would that affect you and any children you have? he may be dead, but the estate could get sued and you could lose your home or any life insurance--

Perhaps when he is sober tomorrow, you could discuss this with him. if he wants to drink and stay home, fine. but he can not go out and drive. that is not fair to you or the other innocent people on the road.

I hope you are a strong woman--you have a very hard situation to deal with. was he using AA? does he have a sponsor that you can call for support? a minister? anyone that he respects?
 
My experience with Alanon teaches family members to stop trying to control the alcoholic. If the family member assumes control and responsibility / the alcoholic is able to be freed from it. He makes his choices. The games you play hiding keys, etc only tend to escalate the problem and exacerbate the behavior. I understand this is contrary to popular opinion. Healthy boundaries are a must and are frequently lacking in any relationship with an alcoholic.
I am so sorry you are having to deal with this as well.
 
Odessa, I have had a bit of experience with alcholics in my past, and I agree that trying to control them simply feeds their disease. When it comes to driveing, however, there's no choice. He risks not only himself, but everyone else on the road and YOUR financial security (he's a big liability and no insurance company is going to cover a drunk ALS patient who shouldn't be driving. I'm so sorry that you have this additional burden--both diseases are hellish, and combined they only exacerbate each other. Unfortuantely, as you know, no discussion you have while sober will hold once he takes a drink (and he may not even require the drink to change his tune).

Speak to his doctor. Let him/her know what's going on. I believe that's where you would start with hospice. Anyone with experience want to weigh in on that?

Don't let him drive. As you know, once he starts drinking, you can't trust him not to. Tell him if he wants to drink himself to death before the ALS gets him he needs to do it someplace that doesn't put anyone else at risk. If he doesn't comply with that, you need to take legal action to protect yourself (see a lawyer).

Before anyone jumps on me about this, I was married 10 years to an alcoholic (not my darling PALS). There is no reasoning, no trust, no ability to control their own behavior. We all want to make our PALS as comfortable as this monster allows, and would sacrifice almost anything to make what is left of their lives as bearable as possible, but a drunk driver is a drunk driver, ALS or no, and this situation is a game changer. Odessa's life as a caretaker is going to be that much more difficult because of her husband's alcoholism, and the odds of getting him on the wagon at this stage are slim.

I wish I had better advice. My heart breaks for you, Odessa.
 
I totally agree with Nuts.

I've been attending alanon with my stepsons partner as he is drinking heavily, so I've been supporting her. I completely agree with their step one that we are powerless and not responsible.

However, with ALS we are in a terminal situation and driving is simply not on, and there are the family to think of. Nuts describes how to really set some boundaries and they are more than fair.

I hope odessa logs back in again to check the replies as she hasn't been here since her first post.
 
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