Hepatic Encelphalopathy - even harder to deal with than to spell

January 26, 2012 11:42 AM

Tips on communicating with a partner who has medical issues that cause confusion but not quite dementia (and perhaps spotting it earlier)

My partner, who has issues with his liver that he is going through the process to start treating, was taken into the ER this weekend after vomiting blood clots. This was frightening enough, but given what was found on an earlier upper endoscopy, not hugely surprising, as it was something we were told to watch out for.

However, after the procedure which stopped the bleeding, and after he came out of the sedation, he was very, very confused, and this eventually led to a pretty major personality shift and agitation, and for the next couple of days, an inability to answer simple questions. Examples: When asked, 'do you know where you are?', he was unable to come up with the word 'hospital' He could only remember part of our address. He couldn't communicate that the reason why he wanted to get up was to go to the bathroom and would forget that he had foley tubes up both ends that would take care of that.

Obviously, this was very frustrating to watch, especially as when he was trying to argue with the nurses, he was disappointed to find me not immediately taking his side. I was usually able to calm him down and get him to trust that what we were doing was okay, but it wasn't easy.

Fortunately, he seems to be responding to the treatment, and this morning, seemed much better still. (Initial lab tests show the same thing.)

This hepatic encephalopathy is, like what originally brought him into the hospital, a possible symptom of his liver issues, and though it is something that will hopefully be less of a concern once his liver treatment is completed, if I understand correctly*, it is also something that could happen again if his ammonia levels get too high day-to-day or especially if he has another medical trauma that triggers it. so I'd like to be better prepared next time.

My initials searches this morning return a lot of things having to do with dementia but this feels different -- it's treatable if we know what is happening, and it goes away. But in the moment, he doesn't get that's what's happening (maybe he will next time -- he was able to remember things he had previously known in a clear state more than things we were trying to communicate then) and can't comprehend what we need him to do to get better.

So:

1) If it does happen again, does anyone have any suggestions on how to talk to a loved one when they are in this confused/agitated/frustrated state?

2) Since this confusion/changed mental state can happen more slightly than it has happened this time, does anyone have any tips on what to look out for to spot it? (Particularly some that won't make me super paranoid and overly anxious/on the lookout for false signs.)

Thanks -- and apologies in advance if this repeats a past question or doesn't make sense. It's been a strange week.

* Like everything, I'm going to be discussing this with his doctors as well as his hepatology specialist, so I'm incredibly aware YANMD.

posted by MCMikeNamara to Health & Fitness (8 answers total)

The term for this kind of temporary and reversible change in cognitive status is delirium in medicalese. You can see this from a whole host of medical conditions from things that deprive the brain of oxygen to infection to toxin exposure. In the case of hepatic encephalopathy, the liver is not removing all the toxins from the blood it should which leads them to build up until the brain is exposed to high enough levels that function is compromised. With medical treatment, the toxins in the blood go away and brain function can return to normal, though depending on how chronic the problem is there might be some residual effects.

As to what to do for your partner, focus on providing a quiet and predictible environment. Speak in a calm and quiet voice and avoid getting in arguments. Remind yourself that it's the disease talking and not your partner. Give as many cues as possible to help orient your partner which can help ease anxiety and agitation. This might include making sure there is a window s/he can see to understand where they are and what time of day it is, haivng a white board in view where you write down where s/he is and what day it is, having familiar pictures or objects from home that you know are soothing. If you look up sundowning (a delirium that can happen for people with dementia), you may find some additional strategies that are helpful.

Best of luck to you and your partner and I hope the treatment goes well.
posted by goggie at 12:37 PM on January 26, 2012 [3 favorites]

I have no direct experience with what your partner has, my mother has been diabetic her entire life, and one of her early signs of high/low blood sugar is confusion and irrational behaviour. I have spent a lot of my life handling her confused moments, and picking up on the odd signs that it is coming.

I use a firm but gentle voice when talking to her, I try not to talk down to her. As I got older we sat and talked about the best way to handle these situations between us and basically it came down to her agreeing to trust me. This happened after an incident when she tried to call the police on me for trying to kill her with a glass of fruit juice when she was in the middle of a really bad hypo.

Anyway the point we agreed on was that no matter how weird what she thought I wanted her to do was, or how confused she was that she would trust me and I would get her through it. I would explain everything to her afterwards, but she just had to trust me at this moment. It was very brave of her as she is a very strong woman, but I have what I call Mum's hypo voice, its a caring but firm voice, you'll often hear nurses using the same one. I clearly explain what is happening, and what we are trying to do to make it better. "Here drink this juice, your blood sugars low." "Give me your hand we need to do a blood test." What ever you do sound confident and in control (you can freak out inside) they are confused, and frightened and looking to you for guidance.

Things I look for are her tone of voice, and her tendency to repeat things, to not get information and to appear unfocused or to get frustrated because something isn't working how she thinks it should. Being a bit paranoid to start with would be pretty normal I imagine, I've had to deal with this all my life so picking up the signs sort of comes naturally to me and my brother (my father traveled a lot).

All advice given is based on my experiences, I am not a doctor or nurse or any sort of expert on your partners condition.
posted by wwax at 12:40 PM on January 26, 2012 [4 favorites]

I am not any sort of expert either, but my experience with this behavior with a loved one is similar. One thing I had to keep telling myself is that as scary and frustrating it was for me, it was even more so for my loved one who was experiencing the confusion.

Be honest and calm - if you don't understand the information that your partner, in a state of delirium is trying to convey, be patient and truthful, and tell him you don't understand but you want to understand, and that no matter how frustrating, it isn't going to help if he continues to get upset. The same works for when you need to explain something to him when he is confused. Let him know you are not in his head right now, but you are doing your best to be clear and make it less foreign for him, to please be patient with you.

This worked for me. I hope it will help you. You will start to see a pattern to know when he will shift into a less clear state, so be patient with yourself, too. It just takes time to figure it out.

I wish the best for you and your partner- hope everything goes great. You are awesome for looking for ways to make all of this go smoother. He is luck to have you.
posted by flesti at 12:53 PM on January 26, 2012

Have you asked to see if the medication or treatment given could have contributed to the mental confusion? My experience of a confused state is with a mentally ill adult who suffers from Paranoic Schizophrenia. A calm tone of voice, a lot of respect for the patient, patience, and not taking remarks personally have helped me trough the years. You will need, maybe not now but for certain later, some support. I hope you have somebody close to you, in whom you can confide and to whom you can gripe. If not, remember us from Metafilter and use my memail anytime you have a need.
posted by francesca too at 12:58 PM on January 26, 2012

Lots of patience.

And, if you want some "in the trenches" advice--http://www.wellspouse.org.
The forums are great and very accepting. :)
posted by luckynerd at 1:31 PM on January 26, 2012

I have experience caring for a friend with end-stage liver disease.

First, the ammonia can potentially be reduced by putting your SO on a lower-protein diet. I am surprised no one in the medical establishment has talked to you about this.

Second, there are drugs that can help, including Lactulose (what my friend took) and I believe newer ones as well. Lactulose has to be used carefully as it causes diarrhea and it's a fine line to tread so that the person can think more clearly but not be tortured by always having to use the bathroom.

Third, why not focus on non-verbal communication rather than on talking to your SO a certain way? A massage, a hug, deep eye contact all might get through where words do not.

Good luck.
posted by parrot_person at 2:03 PM on January 26, 2012

I wonder if it would help to have a routine when this sort of thing happens--like, have a set of questions that he can always answer (what color is my hair? etc.) or a song you always hum or something. My thinking is that even if his cognitive abilities are diminished, he'll eventually adapt to the routine through conditioning, and it will at least help him stay calm. It will also help you stay calm, which will help him. If he's confused already, then seeing you anxious probably exacerbates that.

I was also going to suggest the low-protein diet and Lactulose, if your doctor hasn't already brought it up.

I'm sorry you guys are going through this. Hope the doctors can get it under control soon and give you some good answers.
posted by elizeh at 7:45 PM on January 26, 2012

Response by poster: Thanks everyone for sharing your answers and experience. Just wanted to drop in and let you know that things are much better. Shortly after I posted this actually, my partner called to let me know they were discharging him as his second blood test had come back with his ammonia levels well within a normal range.

Just to clarify, to alleviate any concerns, he was already on Lactulose in the hospital -- and is still dosing on it to make sure he stays regular (or more accurately, as we figure out and err on the side of too much, much more than regular) and we had already known about the low-protein diet. I think 'getting it to not happen again' is as in control for us as we can right now. But if it does, this thread has given me a lot to think about.

In fact, it's actually given us both a lot to talk about, since, despite feeling 100% normal in the head right now, there is still much my partner does not remember from lasat week and this has been a good starting point for both what has happened and what might happen again. Not pleasant discussions but if I can give anything back to anyone who stumbles onto this thread -- please do this with your loved ones as soon as possible. You never know what's around the corner.

Thanks again!
posted by MCMikeNamara at 8:27 AM on January 31, 2012