Completely shut out & needing to know where "the edge" is before I fall off

Straight to the point: I am 24 yrs old guy. My mother was diagnosed w/ late stage cirrhosis (never in her life has she drank) and given approximately 6 months to live back in May of 2010. She had some female issues where by chance I heard that there was cancerous tissue found but they supposedly got it all (that was about 1 to 1 1/2 yrs ago). She won’t let the doctors or nurses talk to any of us about how she is or what’s going on - not even my dad. Currently, she is constantly taking oxycontin & oxycodone. She takes other stuff (she’s diabetic) to but those are the medicines that make me see change in her. She is always sleeping or acting crazy goofy. Whenever I come home now there is stuff messy everywhere. My dad and me have to clean up all kinds of stuff that’s drug out and scattered (food, papers, all kinds of stuff) my mom has never been a slob or a goofy mess but since she started taking all those new meds she’s a mess. I know my mom isn’t going to get better. They’ve never tried to fix her from when she first got sick (May 2010). They treated her for her female problems because something fell out (?) but nothing else I know of. I am not doing well not knowing what to expect not knowing anything it seems.

Oxycontin is a brand name for oxycodone, so she shouldn’t have two prescriptions for it. Are they from different doctors? Is it possible she’s “doctor-shopping” for medications, getting the same meds from multiple doctors?

Even though she doesn’t let the medical staff talk to you, you’re still allowed to express your concerns to them. You or your dad should write up a very concise description of her issues, when the changes happened, etc., and send a letter to the doctors you think can do something about it. List as many prescriptions as you can find, including drug names, doses, name of prescribing doctor, how often she’s supposed to take it (from the label) vs. how often you think she does. They can’t communicate anything back to you but a decent doctor will read it and take it into consideration.

My wild guess on ‘female issues/something fell out’ is… uh, maybe you don’t want to know about this stuff. So skip this if any kind of ‘female problems’ with your mom is too much for you to think about.

My guess was a prolapsed uterus. That happens sometimes, and they’ll either do a hysterectomy to remove the uterus entirely, or do an operation to put it back in place.

It’s hard to know what to say about what they did or didn’t do to ‘fix her’ if she won’t tell you what’s up. Cirrhosis has many causes that don’t involve alcohol, and what caused it may or may not have a decent treatment.

I’m so sorry you’re dealing with this. I’m assuming you and your dad have already tried to talk to her and she’s refused to acknowledge any issues?

Medical advice is best suited to IMHO.

General Questions Moderator

Unfortunately they can do transplants where the cause of cirrhosis has been removed, but not where there is still this cause…

Poor concentration and memory is a symptom of late state cirrhosis .
It is caused by ammonia in the blood. , the liver is failing to clean it.
There are drugs to take to treat that. Lactulose or Xifaxan.

Oxycontin is a sustained release formulation of oxycodone and used for providing a baseline level of pain relief in chronic pain patients. Immediate release oxycodone is used on top of that for breakthrough pain. This is a very common regimen for controlling chronic pain.

USCDiver, You make a good point; I had forgotten about the different release styles. If you find multiple immediate release bottles from around the same time or if there are multiple doctors prescribing similar meds then there is cause for concern.

Oxycontin can be a bit of a dicey choice for a cirrhosis patient.

Attached here is a long thread of comments from another site where various people discuss living with a loved one who has been diagnosed with cirrhosis. It may be helpful to you, but it may also be emotionally difficult to read.

Al-Anon can be a useful resource for people who are dealing with personality changes in a loved one that arise from substances, even though this is not the classic substance-abuse scenario.

Your Dad needs to speak with her doctor and perhaps an attorney. As she gets closer to end of life, and as her mental state deteriorates from the cirrhosis and opiates, she cannot make her own medical decisions and other decisions in her life. Ideally, she will recognize this and still be of sound enough mind to make sure your Dad has all the legal rights he needs. The doctor will be able to explain what he needs in order to start including your Dad in the discussions.

Until your mom is no longer competent, you and your Dad don’t have a right to her health information, silly as that sounds. But it sounds like with the medications, a case can be made for her competence.

The reason they didn’t treat her cirrhosis is that there isn’t anything they can do, short of a liver transplant. She may or may not have gotten on a list. They probably gave her a bunch of lifestyle changes to slow the progression of the disease.

(my brother in law was on both oxycodone and oxycontin for pain. My sister who is an RN went in and did an end of life plan and looked at his medications - we got more information from her based off what he was taking than we got from his doctors or him. He didn’t want to talk about it, and his doctors couldn’t talk to us - his was cancer).

She does take both oxycontin & oxycodone in the manner described by USCDiver - prescriptions all from one doctor.

I believe your thoughts on her female issues are right they did the surgery a year year and a half ago but now things have fallen out again and they have told her she can’t have surgery again. Said not safe to put her to sleep again.

Thanks for your reply.

She drinks some liquid stuff she says is suppose to keep her from being confused but if it’s helping I can’t tell. It is a medicine her doctor told her to take but I don’t know what it’s called.

This is a shot in the dark, but I wonder if she’s overmedicating due to anxiety or depression. I know I’d be suffering from one or both of those in her situation.

I think a well-written letter, sent to each doctor that’s listed on a pill bottle or that you otherwise know of, is your best hope. Start the letter by identifying who you’re writing about (including date of birth), who you are, your understanding that the doctor can’t tell you anything, and by stating that your mother refuses to share any medical information with you but that her behavior has changed dramatically since (date it started) and not only has it completely disrupted your home and lives but you are worried for her mental and physical health.

Then list all known behavioral changes, since when, and known medications and doses/frequencies you think she’s taking.

Try to be clear and to the point, if possible.

Of course, if a doctor brings this up with her, this will cause tension. If you think it might work and might be important to do, start off the letter with a request for anonymity and for the doctor to not disclose that he/she received a letter. This may not happen, however.

I don’t believe that the doctors care how much medicine she takes to get some pain relief because she is never without pain. I know my mom is going to die from this I guess the hard part is the medicine making it where I can’t tell how well or poorly she’s doing. I just wish I knew where she is in all of this and had some idea of how much longer she has. I get home from work before my dad every day and worry I will come in and she will be gone. Every day like that is whack. It makes me feel bad that that is such a big worry when she is going thru all this stuff. I guess what I want to know is are there things I can count on happening with her as she gets worse or could I come in and her just be gone?

I think this is the best option to try also.

It’s possible that the cirrhosis is caused by hemachromatosis (iron overload). It’s genetic and has to be diagnosed through gene testing. Unfortunately, by the sounds of things, it’s probably too late to treat it effectively.

I’m so very sorry you’re having to go through this. I’m assuming that you and your dad have tried to talk to her about your concerns and have gotten nowhere. Is there someone in her life who she might listen to and who might persuade her to disclose what is happening? A sibling, friend, minister?

Otherwise, perhaps you could ask the doctor to talk to her about the importance of keeping you informed. If/when she becomes unable to express her own wishes for her health care, it will fall to your dad to do so, and at least maybe a doctor can persuade her that it’s best if, therefore, he isn’t taken totally by surprise if/when she ends up in the hospital with complications.

She has a DNR paper and a copy of it is attached to the shade on the lamp by her bed. She has made arrangements at the funeral home she wants us to use. I’m close to my grandmother and she won’t even discuss things with her. My grandmother is closer to her than anyone else. I guess things will go as they go. Thanks for your replies.