My mother is dying slowly from liver failure...I need some help?

[PuffyKitty82]

Current medical issues - My mother (64) has cirrhosis of the liver,  vaculitius (autoimmune disorder limited to outer skin, active wounds), congestive heart failure (has heart structure changes and was symptomatic 5 months ago, has had 2 heart attacks in 10 years), renal failure (not on dialysis).

For the last ten years she has been in and out of the hospital due to her drinking.  Either from severe breaks from falls (re-constructed shoulder surgery) or from poor health - pneumonia or the like.  She has nearly died more than ten times as well.  I made her go to rehab about two years ago but it didn't stick.  She started drinking again and keeping it a secret.

I started to write her history out but realized it would be a book sized wall of text.  Basically, she has been in and out of the hospital and skilled nursing over the last 5 months about 4 times.  She is now home, I hired a care giver but can only afford a few hours a day M-F.  I work full time and I am here sole support at this point in her life. She lives alone and receives alimony every month.  She doesn't qualify for medicaid yet, I am working on this piece.

My question is when can I say yes, we need transitional care? I'm sort of burning the candle at both ends with working full time. She also recently had increase confusion which might be from taking too much pain meds or from her liver not functioning.  She is bed ridden, using bed side commode, I noticed her circulation isn't so great, very cold feet and hands.  She has been having an increase of nausea and I took her to the hospital last week and they did tests, couldn't find anything and set us home.  Her blood work looked "Okay for someone with liver failure"

She has discontinued drinking (doesn't have means to get it - but hasn't attempted to get it.)  I now keep her debit card and am handling paying her bills ect.

The liver doctor said he can't give us a time frame because "we don't hold all the cards"  

I guess I am just completely stressed and feeling like I am being pulled in all directions.  Between work, my own family (my husband has washed his hands of her) and my life being now all consumed by the women I have spent the last 5 years trying to not be involved with (AL-Anon &therapy).

[flyinlynn]

Hi so sorry to hear about you and your mom’s struggles.

Unfortunately with the alcohol she needs to be clear for at least 6 months but with her heart condition she likely would not qualify for transplant. Have you discussed this option with her hepatologist?

Unfortunately with advanced liver failure the only effective treatment is a liver transplant. And as her doctor has said there is no way to know how long she can last.

You said she is taking lactulose so I assume she has Hepatic Encephalopathy which is probably the cause of her confusion.

Do you know her MELD score?

All you can really do is get all the help for her you can as far as social services and Medicare Medicaid also she may be eligible for social security disability depending on factors I am not familiar with. Hopefully she is under the care of a liver transplant center. Even if she is not eligible they are best equipped to follow a patient like her. The should have information about social workers who can help guide you in this difficult time.

I also have cirrhosis for now 10 years mine is from Hepatitis c which is now cured. But I am compensated  so far anyway.

Sending my best wishes to you and your family.

[PuffyKitty82]

I don't know her MELD score.  I know her liver is damaged beyond repair but I think she wouldn't be a candidate for transplant based on all her other medical problems.  She does have HE and recently this increased this week.  I think she has wet brain syndrome from drinking so much.  Ever since last year her mental capacity has been dwindling, the hospital social worker rated her at near dementia level but not yet there but close... I guess even though it's such a struggle I still want her to be able to live out her final years comfortably in a familiar space - her apartment.  I don't know that this will be possible though given the difficulties she has and the amount of care she requires including the fact I don't have any additional family here to help.  

Thank you for your kind thoughts and advice.  

[flyinlynn]

Never heard of wet brain syndrome I think it may be a layman’s term for HE. Pain meds and sleep meds can increase HE symptoms but by the time you are at End Stage decompensated cirrhosis treatment becomes very complex.

You can ask her doctor about her MELD or google a MELD score calculator. The MELD is based on some of her blood tests.

The MELD is used to stage patients for liver transplant and estimate 90 day mortality. The scale goes from 6 to 40. A patient needs ascore above 13 to be listed and most receive transplant around 30 and higher.

Even though she is not a transplant candidate you can at least have an estimate on how ill she is.

Again my sympathies to you at this very difficult time

[PuffyKitty82]

Wet brain syndrome is seen in alcoholics, it's from malnutrition and is similar to dementia.

[flyinlynn]

Ok I just read about wet brain syndrome yes different cause (alcoholism, malnutrition, low B1 levels) than hepatic encephalopathy (cirrhosis resulting in high ammonia blood levels effecting brain function) but sounds like the symptoms would be similar.

The symptoms of wet brain vary depending on whether the person is experiencing Wernicke’s encephalopathy or Korsakoff’s psychosis.

Wernicke’s encephalopathy causes various symptoms, such as:

Confusion
Loss of mental activity that can lead to a coma or death
Loss of muscle coordination (ataxia) that may lead to a slow or unsteady gait
Memory issues
Some people experience changes in vision, such as abnormal, back-and-forth eye movements. They may have double vision, or their eyelids may droop. When Korsakoff’s psychosis arises, people may lose the ability to develop new memories, and they may experience severe memory loss. Both visual and auditory hallucinations may occur. Some people who have Korsakoff’s syndrome may make up stories, oftentimes to fill the gaps in their memories..


Symptoms HE

There's a lot of variety in the way HE affects people. Not everyone has the same symptoms. For some folks, they may be very slight or come and go.

In some cases, the effects of hepatic encephalopathy start slowly and then get worse bit by bit. But sometimes they hit you hard all at once.

There are some mental signs to watch out for. For instance, you may:
Get confused
Forget things
Feel nervous or excited
Notice a sudden change in your personality or behavior
Speak or act inappropriately to others
Not feel interested in things
Get cranky
Of course, when it comes to changes in behavior, sometimes you're the last one to realize that something is off. So if you've got a long-term liver disease, ask your family and friends to be on the lookout for shifts in your personality. Tell them to be honest with you if they see your mood has changed or you're just not acting like your old self.

You may also notice some changes in your sleep patterns. You could feel sleepy during the day or stay up late at night.

Some physical changes can start creeping in, too. You may notice that:

Your breath smells sweet or musty.
It's hard to move or use your hands.
When you hold out your arms or hands, they shake or flap.
Your speech sounds slurred.
You feel slow or sluggish when you move your body.


I read treatment for wet brain would be treatment with thiamine and treatment for hepatic encephalopathy is lactulose.

Since they are treating her with lactulose I am guessing she has hepatic encephalopathy as a symptom of her cirrhosis. Have her doctors said anything about her having HE?

[PaulaAnn]

Can you call the hospital and talk to a patient advocate?  or get on FB a cirrhosis group and ask on that site.  There are plenty of people who may be able to help you.  can the dr's office offer any suggestions?  sounds like she needs to be in a rehab/nursing home.  I'm not up to snuff on these things.  I'm dealing with cirrhosis and living on my own.  I would do what they used to say..let your fingers do the walking..call some groups..crisis centers...support groups online.  sorry I couldnt be more help.  wishing you all the best...know its hard.  

[PuffyKitty82]

Thanks for your ideas and thoughts .  I am actively exploring options with two social workers (senior disabilities and a home health program through her private insurance).   At the moment we are in a holding pattern of sorts until other things potentially can be put into place.  My mother doesn't want to spend her final years in a skilled nursing center, at the moment, this is working mostly due to her alimony monthly income.  She wouldn't be able to afford skilled nursing at this time.  I have been advocating for her hard and it is exhausting.  I don't want to go into extensive details at the moment but right now we are just stuck with how things are.  There is a potential that I can get her onto medicaid (a few roadblocks I am working on).  She's been evaluated and  potentially could have up to 80 hours of in home care giving paid for...but again there are a few barriers to access that at the moment.

She currently is taking 3 - 4 doses of lactose a day.  Her liver doctor hasn't given me a time line and just says "We don't hold all the cards" meaning patients with this level can either do okay, or get worse.  Because her ESLD is from alcohol she doesn't qualify for a transplant at the moment...in addition she has so many other underlying health problems I am not sure they could do the surgery.  

It's just been a rough five months for both her and me.  I have reached out to home health (private insurance) services and requested they review her case on if she should be receiving palliative care/transitioning care.  I guess if I am asking the question from what I read online that means it's likely you need the assistance. I think I am also just super overwhelmed. Each day it feels like scramble to get things in place or it's a new medication, or new device we need.  

I've never posted on this site before and I guess I was hopeful for some support and I am open to suggestions.