Mom

My mom was diagnosed back in March of this year with cirrhosis, which was caused by the long term use (20 yrs or so) of Methotrexate.  She has been living with psoriatic arthritis since her mid 40's.  She is now 64, completely bed-ridden, incontinent and is barely eating.  Most times when she does eat, she ends up choking or throwing everything up.  We have to crush her pills and put them in apple sauce.  She has ascites and has to be tapped on a regular basis.  Is on lasix to help with the fluid.  She has also been suffering with terrible bed sores because she cant move, diarrhea (not on lactulose ???) she looks like a frail 90 yr.. old woman.  My father and I have been the main caregivers....and its been draining.  I work a full time job and am married, and he is so burnt out...we looked into so many options....nursing homes, short-term facilities, visiting nurses.  We finally decided on a live-in companion.  She has been there for a week.  It has been very helpful for dad and I, but my mother is not happy.  I go to visit her every day and when I go to leave, she cries and begs me to stay.  I just don't know what to do.  I have beat myself up for her developing bed sores, for not spending more time, for so much....I have also tried to get hospice in to help with some of her care and her docs won't even write a script for a home evaluation. I guess I am writing to just vent...sorry.. :)    I also wanted to find out if the choking and throwing up goes along with this disease?  Her blood work has come back fine..at lease that's what the dr. said.  I can not get a straight answer from anyone.  Her gastro dr. told me that she is definately not a canidate for a liver transplant and that we just have to hope for the best.  That people with cirrhosis can live 20 yrs.... I just wish I knew what more to expect?  Is she end stage?  Does she have to have encephalopathy to be end-stage?  I have been searching thru so many forums for the answers and each person's illness is so personal to that one person.  Thanx for listening...

Hello Jrzegirl and welcome to HealingWell.

Talk with your father,  he may need to be very assertive with her doctors.  If he is not the type or he can't for any reason, maybe it's time to talk with them both for you to be her medical advocate.  To get power of attorney for her medical needs. 

Why won't they write a script for a hospice eval.   Is it because  he feels she has more than a year left?   I would demand answers........Demand a referral to a Hepatologist.   You  need an explaination about your mom's condition  and what they feel her prognosis is.......GI docs are not as knowledgeable about liver disease as Hepatologists. 

With her being bedridden and not being able to keep down much........doesn't sound too good to me.

Throwing up comes with this disease if she is taking Lactulose.  It's a nasty med that all patients dread taking but is medically necessary  once her ammonia levels start rising.  My husband didn't starting throwing up until he start taking it.  I don't remember him ever having an issue with choking.

Hang in there........we are here for you.   Thoughts and prayers....  

  

Thanks for all your replies. My father is just not able to articulate well. He gets very intimidated and just can't do it, which is why I am the one that has had to really step up. I am not pleased at all with her docs, but am hesitant to "start all over" with new ones....I am very torn about that. I have spoken with them all (her gastro, primary and rheumy) on several occasions thru phone calls and time she has been hospitalized and they all can't seem to give me any direction. The live-in is a home health care aide, she is certified so she is able to help care for her wounds, give her meds and move her around. She really has been wonderful. My mother is being bathed daily and her bandges for her sores are changed several times a day, which is what she needed. Forgot to add that my mom is also a diabetic with insulin daily...I am asuming that is why she is not a canidate for liver transplant????

She did have a endoscope done in the hospital a couple months back, I guess they were looking for varices?? Never told the family why even though we inquired several times..they said at that time everything looked fine. She is not taking lactolose, so I really don't know what the choking and throwing up can be. I do worry that she is putting extra pressure on those veins..I have been in daily contact with a hospice agency and the contact has personally gone to the dr. offices about getting a referral and have been told to speak with the gastro...I just don't know what else to do.....

hello, sorry about your mom but i reccomend to a hepatoligist. get medical power of attorney and get all her medical records. i would insist on going and asking questions. my moms doctor didnt seem to care until i stepped in the picture and then he stepped up. this place is a wonderful site