Alcohol abuse and dementia/delusions - questions
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All,
6 days ago, my cousin was taken to the emergency room because she was out of her head and couldn't walk. She's always been a drinker, but she lost her job last summer and I believe the idle time and depression caused her to hit the bottle harder and harder. According to her "boyfriend", the week before he took her to hospital she was drinking from the time she woke up till she fell asleep. She ate nothing for 4-5 days. She lost feeling in her feet and he caught her walking by grabbing hold of furniture to assist her. A couple of days later, she was butt-walking across the floor because she couldn't stand. A day later, she was unable to move at all.
He finally took her to the ER and they found her potassium had bottomed out and her blood count was extremely low. They gave her 2 units of blood and put her on a potassium drip and also gave her something called a rally pack IV. She remained in the hospital until yesterday and was then relocated to a physical rehab center. Medical tests on her came back pretty clean. She has a fatty liver but her enzyme levels are not at a dangerous level. Here's what I'm trying to understand and what has the family concerned. She's been talking out of her head since she went in and it's not getting better. She knows who I am, who she is, where she is, what day it is, etc, but then she'll say something completely bizzarre, like ask how my fishing trip with the Kardashians went or tell me Marilyn Monroe stopped by last night. At first, they told us the potassium deficiency caused the mental problems, then we were told it was withdrawal symptoms. I can understand both things, but she doesn't have any other 'withdrawal' symptoms and she's not getting better. The past 2 days it's been hard to get her to wake up and she's not on any medication. She can talk to you with perfect sense and even makes jokes. They told her she could take anything in the hospital room with her when she left and she cracked that they should be careful telling her that, because they might come back and find the television missing! The next minute she's wondering what happened to the kitten that's been in her room keeping her feet warm. She's weak and slurs her words like she's drunk or drugged but she's not. Today, we discussed her condition with a nurse who is also a little puzzled by by her seeming lucidity and delusion. After we told her the circumstances, she said it could be alcohol induced dementia. I looked that up but it doesn't seem to really fit her particular symptoms either. We know she's in trouble and no one is taking this alcohol abuse lightly, but I'm concerned about her mind right now. She's not craving alcohol or even talking about it, (except to ask if she'd be able to have a drink at the new place) and she's not in any physical discomfort except for her tingly feet. Has anyone had any experience like this? Is it common? Is it simply withdrawal? Any help or answers is greatly appreciated. -- Polly
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l71207 Sweetpolly39
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Sweetpolly39 l71207
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Thanks for your input! Glad to hear the naltrexone is working for you. Having so many success stories here can really help when it comes to convincing someone to try a possible cure. I sure hope she snaps out of this mental issue and we're able to convince her to give something like this a try.
Sweetpolly39
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Hi everyone. I want to give my continued thanks to all of you for all your advice and encouragement. You've all really helped me a lot.
There's really nothing new today. Debby is my cousin's name and she's still no better, mentally. Her sister was up today and spent hours trying to see a doctor and had no luck. It appears he never saw her at all today. Because this facility is basically and foremost a physical rehab center, it doesn't appear she's getting much real medical attention. She is getting b-complex but I'm unsure of the dosage. Also, they're supposed to start speech therapy with her, but we don't know when. According to them, speech therapy will delve more into where she is in her head, so that sounds promising.
Her goofy boyfriend (still mad at him for letting her almost die before taking her to the ER, GRRRRR!) apparently went up sometime yesterday. He sent me a text this morning and said he spoke to the head nurse who told him she had alcohol induced dementia and she had killed part of her brain. I told him she doesn't know what she's talking about since no tests have been run on her. I've grown so sick and tired of medical people who know EVERYTHING without any evidence and feel it's their duty to pass it along to us. Who does that? What a horrible thing to say to a loved one! Totally off the subject, but my husband has been battling cancer for awhile and some of the callous things young know-it-all doctors have said to us has been flabbergasting!
I'm going to see her tomorrow and her father should also be there, so I'm going to try my best to see a doctor and one way or another, I will find out what dosage of B vitamins they're giving her and any other supplements like folic acid. I'll check on the laxative also. Any ideas on how much thiamine would be recommended in a case like this? And how much general b-complex?
They also told us they have a 'tentative' release date for her of April 8th, so that's a bit of a relief! She may not be ready then, but at least she'll still be be under care for another week and a half.
We got hold of her bills and are finding that she's not been paying a lot of them. She has a few that are auto-paid out of her account and it looks like those may be about the only ones getting paid, so her poor father is trying get her caught up on some of the bills. I'm afraid her credit may have already been adversely affected by all this. That seems like a small thing right now, but you're only as good as your FICO score here in the good old U.S. of A. That's further evidence that this has been going on awhile. It looks like since December, anyway.
I spoke to my friend that I mentioned is still struggling with opiate addiction. He is a trained chemist and is very familiar with naltrexone. He said it's used often for opioid addiction, but he's also not known of any alcoholics being treated with it, even though he said that's what it was primarily developed for. The fact that he's aware of it's use in this area, though, is promising.
Hopefully, I'll have more info tomorrow. Thanks again for all your good info. I feel a little better armed when talking to them.
Warm regards,
Polly
RHGB Sweetpolly39
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Will post a reply tomorrow, with one or two comments it's late here, so bed is calling.
Sweetpolly39 RHGB
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Well, Debby's father was up today and we talked to her case worker. They are not giving her niacin or a b-complex. Only a multi-vitamin. No laxative, either. I asked them to please write niacin & other strong b-complex down & see they can give it to her. They won't let me bring anything in to her from outside.
Her father wanted to know what kind of doctors they have on staff and she told us they have an orthapedic doctor and an internal medicine doctor. So basically a GP. Her dad is going to try to speak with him to see if they can or will run any kind of tests, etc.
I verified with the case worker that their facility is not set up to deal with mental issues. They are a physical therapy unit. She suggested that the hospital misled them about her condition before they accepted her and everyone agreed. The hospital just wanted her out of there and they hid her mental issues (I don't know what else to call them) from the rehab center.
Everyone agrees she would have been better off at a facility that handles alcohol and drug rehab as well as physical rehab. We asked about the possibility of a transfer, but she didn't seem to think that was feasible either because of insurance issues.
Her dad asked if he could bring in his own doctor and of course that would involve a bunch of red tape that wouldn't be resolved before she's possibly released.
We then asked if they would release her if she gets strong enough but is still mentally impaired. She waffled on that a bit, but said she didn't think they would. She'd probably have to go to a group home setting or assisted care.
This whole thing is very frustrating. It's like she needs help they're not equipped to give, but she's stuck there. She's also fighting her physical therapy. She doesn't want to do the work and it takes a good deal of cajoling to get her to do some of the harder tasks, which takes precious time away from her alotted hour sessions.
She got her first speech therapy today and I guess that may help a little, but it's not addressing her problem area. They show her cards with pictures and ask if it's animal, vegetable, clothing, etc. and then ask her to write down exactly what it is. So, she says animal and writes rabbit. She doesn't have problems recognizing a rabbit. The problem is that she'll tell you there was a 12 foot one out on the lawn last night.
We also asked the case worker what they actually had her diagnosed with. She told us the primary diagnosis was 'general weakness', to which my uncle quipped, 'Jeez, I should be a doctor! I can give you THAT diagnosis!' They also had anemia, liver disease (which they haven't tested her for. They only did an ultrasound on her and said she had a fatty liver), and one you mentioned, encephalopathy, which again can't be just thrown out there before they've done any tests on her liver!
Even though this place is not really designed to help her, I still can't help but feel they'd be paying more attention to her if they weren't blaming her for bringing it all on herself. Maybe I'm wrong. It's just depressing.
Warm Regards,
Polly
ADEfree Sweetpolly39
Posted
Thanks for the update, SweetPolly. I wonder if it would do any good to talk to an appropriate facility for her, perhaps they might have dealt with this type of situation before. If that's the best diagnosis they can come up with, they might not even know what to look for or how to look for it. It would seem to be simple enough to run some blood tests to check her liver enzymes, I can walk into a clinic and get that done myself literally any day of the week. I can't imagine that they wouldn't be able to complete that basic task.
Some specialized legal counsel may be in order, I don't know. I just wish I knew better how to advise you.
JulieAnne101 Sweetpolly39
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Hi sweetpolly. If hosp had tried to make my husband have physical therapy during a detox, I think his language would have been rather colourful.
I don't have any answers for you. I don't know how your health system works. Do you get searched before you go into the building? There is no way to get some thiamine to her? The facility is negligent in their care by denying her the right treatment, they could be causing her mental and physical harm.
Isn't there a medical counsel or some kind of ombudsman you can complain to in the states?
Sorry I cant help you more.
Kindest Regards
JulieAnne xx
RHGB Sweetpolly39
Posted
Okay, Polly,
Two long posts to answer. I'm going to try to speed answer them and you can pick out points that I didn't cover properly and I will come back to them.
I had speech therapy because of my stroke, but it was one of the last things I had done.
One of the problems people have, is they default to a parent - child relationship when dealing with doctors. Make sure in your mind that it it is an adult to adult coversation.
I still to this day (remember I have cirrhosis) take, one tablet, 100mg thiamine each day. The vitamin B compound strong/complex doesn't have an amount anywhere on it, but I'm meant to take three a day. Folic acid is 5mg once a day. (that is the sort of range that you should be looking at) I also still take lactulose.
Yes, FICO is called credit rating in the UK. When I grew up and bought a house/ car etc. as long as you could show wage slips and a steady job, that is all that counted. Now you can have a falling out with your mobile phone company and that is your mortgage application gone.
The laxative I mentioned is not like normal laxatives, it is osmotic, It inhibits the gut flora (helps stop the production of ammonia) and draws water (including the ammonia) out of the system from the colon into the stool. Sounds a bit yucky, but stops people from going mad.
I've had physio. There is normal physio and there is neuro
physio and they are completely different. My neuro physio person (stroke) explained it first thing with me. The nerves get damaged and if the brain can't speak to the limbs, no amount of physio will help.
She is getting physical physio, when she actually needs neuro physio and it is far too early. Her brain needs to be sorted before anything physical.
She needs, to eat plenty of food, even if it is Maccy D's and KFC, just food. She needs those vitamins to help her brain/body, thiamine, Vit B complex-compound/Folics Acid, lactulose.
Then when her brain returns to normal, her body/physio will probably sort itself. But if not, that is the time for physio and speech therapy.
Alcohol dementia is not a recognised medical term. It is a general term when medical people have no idea what they are dealing with and throw it into the pot. Watch their face if you challenege them and say it has no medical definition and could they be more specific and name it, such as, hepatic encephalopathy, wernicke's encephalopathy, alcoholic brain atrophy, korsakoff's psychosis etc.
And once they've picked one of these, then say, and which particular symptoms leads you to this diagnosis?
As for naltrexone, it is well known for helping to beat AUD/alcoholism. It is great for people who are going to start drinking again, it helps to dulll the sense to alcohol a bit, so you are not so inclined to drink so much. But I don't think alcohol medication is mutually exclusive. If it were me, I would be taking Campral right now, so that it would diminish thoughts about alcohol by the time I got home.
Robin2015 RHGB
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A long and precise reply as usual which is great...my father had "Alcohol dementia is not a recognised medical term" spot on...he did stop drinking at the age of 60 or 61 and died at 79...only had demnetia for 3 to 4 years..thanks..Robin
Sweetpolly39 RHGB
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Thanks so much, RHGB, and everyone. I've been away from a computer for 6 days. I believe you are correct in nearly everything you've said, and everything you've said makes complete sense to me. Unfortunately, no one else is listening. We're stuck with what we have, at least for now. At least I can wrap my head around certain things and better understand them based on your information.
Last Thursday they took Debby to another facility to have a CT-Scan. It came back that she has signs of cerebral atrophy consistent with long-term alcohol abuse. The doctor said she essentially has the brain of a very old person and that she may or may not get better. He also said there's nothing more they can do for her. Again, though, this is a guy not skilled in dealing with any kind of AUD (I'm learning the lingo).
Her mind is still bad, but she's getting physically stronger. She's still unsteady and weak and for probably exactly the reasons you've stated, RHGB. Still, she is walking better. Of course, that means they want to release her soon and she certainly can't go home. The facility is in the process of trying to find a nursing home that provides short-term stays till (hopefully) her mind clears. Some places have a minimum age of 65 and she's only 59. We just have to wait to see who can take her and hope it's not somewhere too far away from us. I'm pretty much the only one who can try to help her differentiate between dream and reality and she really needs that right now. Also, the PT gals say she does a lot better when I'm there. She doesn't fight them as much. It's funny that all she wants to do is get out of there and the way out is to do the therapy and she doesn't want to do it. Can't reason with her right now, though.
Her dad got her to sign power of attorney papers over to him so that he can try to get her finances in order. She's got a pension coming and has not even filled out the paperwork for it.
I wish I had the power to provide the needed treatment for her, but we're stuck in the system and our hands are pretty much tied. I feel like I'm getting such wonderful advice and suggestions and am powerless to implement anything.
I'll keep checking back in with updates. It may help someone else in this situation and you all have been beyond terrific!
Warm Regards,
Polly
Sweetpolly39 JulieAnne101
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JulieAnne, they say they are giving her thiamine and that increasing the dosage would be pointless. They don't think she needs the miralax and it's impossible to try to tell a doctor anything as you probably know.
She's fighting the PT and can get stubborn and rather hateful with them. She's better when I'm with her, but I can't be with her all the time. It's just a bad situation.
We do have ombudsmen in the states! My mother was one for many years, as a matter of fact. This is a rehab facility, though, so it doesn't really qualify. Once she gets moved to a nursing home, that will be a different story.
Thanks so much for your input!
Warm Regards,
Polly
JulieAnne101 Sweetpolly39
Posted
Hi Polly. Sorry I couldn't be more helpful. The nursing home should be better for her, though.
I work in a nursing home and the staff have experience of people with alcohol related dementia. We have 3 residents at the moment all with varying degrees of wernicke's korsacoff syndrome. I can't tell you what their treatment consists of, as I don't have access to their records presently, also I need to be mindful of data protection confidentiality etc.
However, what I am trying to say is that there is some hope for your friend now.
Apologies for ombudsman query, just having a brainstorming session. I am completely ignorant of the American legal and health system. However, Doctors are the same the world over, it would seem 😒
Keep in touch. I wish you and yours well
Kind Regards
JulieAnne
Sweetpolly39 JulieAnne101
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JulieAnne, Goodness! No need to be sorry or apologize for anything! I truly appreciate all your comments and suggestions and that you took time out of your day to reply.
The ombudsman suggestion was also a very good one. I'm not sure how many people in the States even know there are watch dogs out there that they can go to for help. I'd never even heard the word till I was well into my 30's and my mother became one.
I'm very hopeful that she'll get more help in a nursing home. I love her very much and I want her back.
Warm regards,
Polly
RHGB Sweetpolly39
Posted
Yes, well my scan showed alcohol brain atrophy, I was trying to find it in my hospital records today. But there are so many pages it is taking some time to find it again. But contrary to what a lot is said, it would seem that the majority of people, through abstinence or very moderate drinking, plus thiamine etc. do come back to normal.
I am also down as having encephalopathy, which I didn't have at first, but developed after a few days, even though I was being given detox medication.
As for a patient being more settled with a loved one/relative present, that is quite normal. Whilst in ICU, I got quite agitated (their word) and threatened to discharge myself. So they called my wife (outside of visiting hours) and she came and it is recorded that I calmed down.
I do sometimes wonder that they're thinking. There I was, in ICU because not only had I come off alcohol and they were pumping full of drugs and medications, I think I counted twelve at one time. I also was receiving blood plasma transfusions under GA, to try and stem the brain (haemorrhage) bleed (stroke) that I had also suffered.
I felt like going back, when I was better and saying, how do you expect people to act, when their body and mind is under so much stress.
There is an immense feeling that every thing that you know, has been ripped away from you, you are in a stange place and somebody else is in complete control of your life. So seeing someone you know, is like bringing back some stability into the patients life, it's very reassuring.
gwen45436 RHGB
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sharon7979 Sweetpolly39
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Sweetpolly39 RHGB
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RHGB, it seems a miracle you've come through all you have. You're one tough cookie! Hepatic Encephalopathy. Yep. They've used that term, too. I certainly hope they'll give her better meds when she gets tranferred to a nursing home.
You're definitely inspirational and give me 'realistic' hope that she's going to come out of this. The doctors at the current facility aren't holding any pep rallies for her. "OH, the evils of alcohol and look what she's done! Tsk, tsk, tsk. Maybe she'll come out of it, maybe she won't!" I'm so tired of hearing that crap. I almost feel like sometimes they hope people like her won't get better so that they can point at her and use her as an example. I guess they're not violating the 'do no harm' rule, but they sure as heck don't do any good, either, when a family member looks to them for hope.
I found out today that the neuropathy in her feet has been going on for quite awhile, but obviously not as severely. So, this abuse and probably near malnutrition took awhile. She's little anyway, with her normal small self weighing 110lbs, but she's only 90lbs now. When you think about how much weight 20lbs is for an overweight person and then try to equate that with a U.S. size 4 girl it's pretty shocking stuff.
We're working with her case worker at the current facility and she's trying to find a nursing home that's close to us so that we can continue to visit her regularly. As you said, having family and friends around is important for calm and stability.
Warm Regards,
Polly
Sweetpolly39 sharon7979
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sharon7979 Sweetpolly39
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JulieAnne101 Sweetpolly39
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I can relate to RHGB's story. The caring button seems to be switched off when hosp staff are dealing with AUD sufferers. It was only the nurses in the detox centre that showed any kindness. Now that is going to close down.
I do try and educate staff at work about AUD and I have tried to reassure two of the wernicke's residents, because they blame themselves (par for the course) Don't know if I'm making any difference, but I feel I have to try.
Hope your friend improves soon
Kind Regards
JulieAnne