Alcohol abuse and dementia/delusions - questions

Thank you for taking the time to reply. They don't have her on any medication at all. Nothing for withdrawal or pain. Only something for the neuropathy in her feet and I don't *think* that would make her loopy. Alcohol is definitely at the root of this and we know that she needs help with that.

And also thanks for the link to the sinclair method, too! :-)

Thanks for your input, vickylou. I've been doing some research on ARBD (only on the internet, of course) but her particular symptoms don't seem to fit anything I've found, although she does have some issues with memory. Sometimes she can recount an event like yesterday and others are lost to her. No one has done any kind of real cognitive exam on her. Just the typical name, date, day of the week, etc. and she's good at all that. If she doesn't start to improve soon, we're going to have to do something else. 

good reply and much more technical and in depth that I can offer. Well done and food for thought. Robin

Thank you so much for your in depth, thoughtful response, RHGB! We are also certain this didn't happen over 4-5 days. She's been drinking much too heavily probably since last summer, but apparently over that particular 5 day period, she did nothing BUT drink and didn't eat a bite. I will definitely ask about the lactulose and I really appreciate your explanation on how daily heavy drinking affects the body. One thing I wondered about was how she got so completely depleted of vitamins when I know that the ONE thing (besides drinking) she's always been diligent about is taking vitamins every day. Of course, she may have slacked off, but if her body can't absorb them, that explains things. I'm just so afraid she's done some permanent damage to herself. She only weighs 90 lbs (40.8 kg). She's a little thing, anyway, but she's underweight by 9kg. It's good to hear that permanent brain damage is rare. I guess we just have to be patient and give it more time, but today she was excited to ask how I enjoyed the carnival this morning and what rides I rode. It's unsettling, to say the least, and downright scary at worst. Thanks so much for all your time and attention. :-)

For the brain confusion, make sure she keeps being given thiamine. Also try to make sure she is having lactulose. She sould also be on vitamin B compound strong/complex for her body and her central/peripheral nervous system and folic acid.

For her weight, she will gain weight, if she eats. I don't know about food in the US, but in the UK, hospital food is not brilliant, in fact prison food has to be made to higher standards. So people tend to give up on eating.

Try to get her to eat. If she isn't eating hospital food, then bring her whatever she will eat. people recovering from alcohol, aren't usually interested in healthy things like fruit. If there is anything she likes, that she will eat, bring her that, even if it is cake.

Give it time. I was in hospital for suspected alcohol liver failure and a related brain haemorrhage, for almost two months. I'm still here, three years later. I lost an awful lot of weight in hospital, it wasn't until I left, that I started to put it back on. Look on the bright side, my wife had to visit me, whilst I was jaundiced, a horrible yellow colour. I had a completely red eye (subconjunctival haemorrhage) and tubes coming out of me, where they did an ascites drain and I was in ICU for about 9-10 days.

It gets better, give it time. Your main problem, is when she is better, is stopping her from doing it all over again - believe me, it is hard.

Thanks again, RHGB. They booted her out of the hospital and she's now in a physical rehab facility. I'll be sure to check what kind of vitamins they have her on. If they don't have her on what you suggest, I'll suggest it. Can't hurt, but I also can't make them give her anything.

The food at this facility is 'not bad', but she can eat anything and I brought her a very unhealthy, fatty, salty, carb filled meal that she loves and she ate that today. I think her appetite is starting to very slowly pick up, but boy are you right about her not wanting healthy foods! She wants nothing to do with fruits or salads or healthy cereals. The dietician said she can have anything, though, and everything she eats is a step in the right direction. 

She'll start PT in ernest tomorrow and she is not going to be happy about that. I'm hoping that will help not only her body but help with her clarity. Right now she's like a little child and it's heartbreaking. 

It certainly sounds like you've been through the mill yourself, as have a lot of you here. I've read a lot of your collective posts and you are a great source of information and inspiration to others. Thank you for that. :-) I'm glad you're recovered! 

I greatly fear she will do this again. I've already explored the naltrexone, but we're so backward here in the U.S. it's difficult to find a practitioner. Fortunately, there's always the internet! Don't worry. I'm not jumping into anything, but that Sinclair method really sounds like something that could work for her. It's definitely worth a look if she decides to not change her habits. 

seems very postive now!! You are a great support. Robin (UK)

"We're so backward here in the U.S. It's difficult to find a practitioner "

?I was under the impression from US posters, it was the other way round! A lot of our gps seem to be unaware of AUD and medications. Well the ones I've seen and read about.

Vickylou, not sure what AUD (alcohol use disorder?) is, sorry, but I looked for doctors that were aware of The Sinclair Method, and found none in the 3 surrounding states and only 1 in my state, but when I looked him up, his site indicates he doesn't want to treat alcoholics. 

I'm definitely no expert, not even close, but I've been close to one other alcoholic and several people addicted to drugs. It seems all anyone talks about or recommends is AA or the like. AA worked for my crack cocaine addicted friend, but not for anyone else. The alcoholic died of liver disease, the heroin addict actually got through her addiction by force of prison and has stayed clean, and the opiate addicted friend is still battling. None of them received any help from doctors in the way of pharmaceuticals and the only therapy or treatment anyone suggested was AA or NA. Everything is so steeped in religion here. It can be extremely cloying. 

Maybe if we lived somewhere more progressive, like California, it would be easier but, unfortunately, we live in Kentucky. 

We'll definitely explore every possibility available to us, but she has to cooperate and I know without a shadow of a doubt AA is not the answer for her. 

If you know of any other medications or treatments to explore, please share them. I'm open to any suggestions. Right now, though, she's still completely out of her head. She called me last night screaming that everyone was there with her and then just left her. Where did we all go? Then she called me five more times in the middle of the night. Today she's still looking for Rob Kardashian, convinced he's there with her. I'm worried the rehab place may kick her out if she doesn't snap of this soon. It's beyond distressing. :-(

Thanks again, vickylou! :-)

Thank you, Robin2015. She's like a sister to me and I'm committed to doing anything and everything within my power to get her past this. 

Well, keep feeding her, whatever she will eat. You can worry about the nutrional value when she is better. I always remember a vet saying to me, when my cat was involved in an RTA and had its jaw broken, so it could not eat. He was given liquivite, a sort of protein drink, which they can lap up (my cat would finish off tins of the stuff). He said, I know your cat will survive, the ones with an appetite always do, it's the ones that don't eat, that I worry for. I'm sure humans are the same.

The UK is not a great place for helping people with alcohol problems, it is a fight to get help. Hence those who have got through it, try to help those that are going through it, by posting here. People with alcohol problems are seen to have brought it upon themselves and lack willpower. However, if you are a heroin addict, you will get all the help under the sun.

I have never been to the AA (I am not religious) but I did get coerced once, to go to an alcohol group therapy session. I'll tell you, if you didn't drink before you went, you certainly would after you left, depressive is the only adjective to describe it. Usually the US is quite good with medication for alcohol, maybe because you live in the 'sticks' it is not so good, but nearer the big cities it should be better.

You have two routes to go down, either the naltrexone of Campral, they work completely differently. I wouldn't count on California as being progressive (I have been there), I'd probably go with Kentucky everyday of the week.

As for the phone calls. I found hospital (I know she is not actually in a hospital itself, but that type of environment) very lonely and very hard mentally. I couldn't walk, so I laid there in the bed virtually 24/7. Keep making sure she eats, hopefully she is on the thiamine and lactulose and make sure, someone visits her daily.

Perhaps look into the Goodman Center in Tennessee? I was surprised to see that Dr. Cox would rather not treat alcoholics, perhaps a call to his office might clear things up.

ADEfree, I will check into the Goodman Center (not literally, lol) to see what it offers. I see you found Dr. Cox and saw the same thing I did. Funny thing is that he's in Lexington, Ky, which is where Debby's (my cousin) sister and father live, so it would be a good location. We will definitely call him if/when we get to that point. He also sounds 'expensive' and doesn't directly accept any insurance, so that could be an issue. There's always a lot to consider. 

Thank you for your time! :-)

RHGB, in my experience, Americans feel the same way about alcoholics as the UK. There's no sympathy and often undisguised disgust. I'm sorry to hear it's hard to get treatment there. We have lots of in-patient facilities to treat alcohol and drug addiction, but it's basically AA with bars. All about the higher power. It sounds very like the meeting you went to. I've gone to a couple of AA meetings to 'support' an addict and they are just awful and, as you put it, very depressive. Then you have to end every meeting with the Lord's Prayer. 

I'll continue to proactively look for help for her and I'm pursuing the vitamin supplements. One of the biggest issues is how she'll pay for it. We have to see what her insurance will cover and what facilities will accept her insurance, etc. 

She can't walk right now, either, RHGB, and I don't begrudge the phone calls at ALL. I'm sure what you went through was pure hell and she's lonely and bored too. It's the fact that they're crazy phone calls. I wish I knew the correct psychiatric term for what's wrong with her. Confabulation? Delusion? She doesn't SEE Rob Kardashian, but she's completely sure she was with him just 5 minutes ago and he's probably in the bathroom. She called me this morning thinking she was calling Rob and said she just couldn't seem to remember his number. 

Someone does go to see her every day, but sometimes it's not for very long. I'm her closest family and I have to work every day and I often work 12pm-8pm, so I can only see her for an hour or so in the morning. Her sister and father live 2 hours away, so they only come up every few days. We're all doing the best we can. I try my best to go every day, though and make sure she's clean and fed and her hair and teeth are brushed. 

Thanks again for all your support. :-)

No problem, Sweetpolly! 

My own TSM doc didn't take insurance either. that said it was about $500 for the appointments, meds and blood tests for the whole 6 months it took me to go from a 12-pack every night to less than a 6-pack per month. Naltrexone is out of patent and available for about a buck per pill. 

If your cousin agrees, it would be a good thing to have a prescription in place in case she slips back into drinking. Getting that naltrexone blockade into place will help considerably in keeping the booze from taking deep root again, so long as she can remember to take it an hour before drinking. The pill isn't taken on dry days, so as one goes along, fewer pills are taken. 

 

It really sounds wonderful! I know there are no miracles and she has to want to do this, but this drug sounds so encouraging. :-) It could really be the difference when she gets past her current difficulties. I can't bring myself to say 'IF'. 

It does seem odd! I think of that sort of thing as taking years to develop, but I'm no expert in it either. 

BTW, like RHGB says there's also Campral. That's taken a few times a day while abstinent and it kills the usual drinking triggers. Takes a couple of weeks to kick in. 

Thanks! Believe me, I'm keeping a log of everyone's advice and every drug, treatment and vitamin/supplement. I can use all the help I can get. 

It's late here, I'm off to bed, but just a quick note on the meds I mentioned.

Thiamine is non prescription and can be bought from any pharmacy or supermarket in the UK. Your cousin, should be taking this now, it is just a vitamin.

Lactulose is also non presctiption in the UK, and I would be surprised if it was prescription in the US. ASDA (supermarket) owned by Walmart, sell it over the counter.

Thiamine is about £3 for either 30 or 60 days, I can't remember, because I have it on prescription. Lactulose is about £5 a bottle (a month), and your cousin should also be taking this now.

They need to be taken when the patient is ill, to help recovery. They are not long term needed, but they are needed now, not later.

Looks like lactulose is prescripiton here in the US, thiamine is OTC though.Oddly enough, we can get B-complex that's 1000's of times the RDA OTC as well. 

Hi Sweetpolly. What a true friend you are.

Have just been reading through all the posts RHGB is exactly right, she needs thiamine and a strong vitamin b complex, I don't understand why the hospital or rehab facility did not immediately start her on this treatment.

I remember my Husband being very confused at the start of a hospitalized detox, he whispered to me with real fear in his eyes that he was in jail and that the lady in the grey uniform was his jailer ( a nurse) He pointed to the bars on the window (they were there because it was the 4th floor and there had been attempted suicides) the staff told me that he needed the multi vits and thiamine that was in his IV, but he kept pulling out the cannular and trying to escape. So I stayed with him and stopped him from pulling it out until the bag was empty. He then fell asleep. When I saw him the next day the difference was amazing, he was not quite his old self but logical and coherent.

My advice is the same as RHGB get the thiamine and vitamin b complex

Let us know how things progress

Kindest Regards

JulieAnne

"Have just been reading through all the posts RHGB is exactly right, she needs thiamine and a strong vitamin b complex, I don't understand why the hospital or rehab facility did not immediately start her on this treatment."

I cannot understand either, it is such a standard procedure. Thiamine for the brain and vitamin B complex/compound strong for the body, plus lactulose if the liver is overloaded and struggling to remove the ammonia.

The OP's cousin seems to have had one bag of 'Rally Pack' by IV, but that's it. Usually it is more than one, I had Pabrinex as well (you can Google it, first answer describes it) and a lactulose enema - very unpleasant. Then, after they were happy, that the levels had been restored, I was still give thiamine and B complex everyday in pill form with all the rest of the medications.

Somehow managed to click on reply before I had finished.

I am convinced, that when someone who is heavily alcohol dependent has their supply removed, even when they are in hospital and being given detox medication, it unbalances them. I was totally cognitive and lucid when I went to see my GP, I was the same in hospital that evening and on arrival (ICU) at the new hospital. But at sometime at the new hospital, I apparently lost it (reading my patient records) and suffered hepatic encephalopathy.

I was apparently, confused, refusing food, refusing bed baths, and generally being a bad patient. I knew I wasn't in a prison, but I felt like I was. Like your husband, I kept trying to escape (one patient did escape, that was funny) even trying to leave with a catheter on and an ascites drip attached. But like your husband, my patient notes show, that I was a lot calmer when my wife arrived to see me.

I think the hospital is responsible for a lot of this. When I have been in Warwick hospital, I have always felt cared for and looked after and this has relaxed me. Coventry is massive, and very impersonal. I always felt that I was just a body in a bed and no one actually cared, I so much wanted to get home. So by the time I had taught myself to walk again (never had any physio) with a stick, I gave them a five day ultimatum, to discharge me or I would self discharge.

Three years later, I can still remember, ward 20, area 3, bed number N42. To misquote an old programme, I'm not a free man, I'm a number, well that's what it felt like.

That's it RHGB I couldn't remember what it was called-Pabrinex-he had another 12 hours later. All of the confusion had gone, just a bit dazed but making sense. I don't think he was given lactose but he could have been. He is still taking thiamine and b complex. He will be taking that for at least 6 months with the Campral (which is still working by the way)

Hope this helps, sweetpolly

Regards

JulieAnne

You are correct, for some reason it does seem to be prescription only. I can't think why, it is just an osmotic laxative - although it works very differently to normal laxatives.

Anyway, not to be defeated, I have found an OTC replacement - MiraLax (brand name). It is in the same category and used in the same way.

It is also available non branded (polyethylene glycol (peg) 3350) and I believe places like Walmart sell their own brand. I have no idea how much it is, but as it is OTC and also available unbranded, I doubt that it will be expensive.

"I'm not a free man, I am a number" absolutely. I am sure that the reason why detox was up on the 4th floor, was because of escaping patients. OH wasn't the only one trying to wander around. The staff were quite impatient with them.

Like you OH couldn't walk, but he wanted to get out of there so much, that I borrowed a w/chair from work, so they could discharge him. He laid on the sofa for 2 days, gradually building his strength up.

The only place he felt really supported was a rehab centre called six trees (I think it was) they did look after him, but I went in and helped with his personal care as the staff were very kind but very busy. This has now been closed due to government cuts. There is nothing to replace this.

Hope you are well

Thanks to all of you! I'll reply to all when I get to a keyboard layer today.

JulieAnne, everyone's info and stories are enormously helpful! Alcoholism or alcohol abuse is a horrible thing to go through. I saw it kill another family member and heard the absolute horror stories his wife told us after he died. We had no idea what all was going on with him and he refused detox. This is a time when family and support is needed. I'm so glad your husband is doing well in his recovery. :-)

RHGB, I'm sure glad to made it through your horrible ordeal. Maybe when she comes back to us we can somehow convince her to try to seek help instead of continuing a cycle of abuse that will only land her in detox or the hospital, or even dead. My greatest hope would be that she could be like you and others here and be able to discuss what she survived with such honesty and humility, while displaying such great strength.  You are all very inspiring. :-)

Thanks for the info, RHGB! 

hi...why is a laxative so imperative? I never heard this before...curious.