i want to thank you all for taking the time to read and reply to my post. i don't have any other place to ask questions or to talk to about this whole thing. on the other hand i'm also sorry that you all are on here, i know what it's like to be a caretaker and can only imagine what it's like to be sick, but that must be very hard to deal with. i admire everyone on this forums strength and selflessness to be to give support and advice to people that they don't even know when you yourself are also dealing with difficult times.
it is hard to do and sometimes i get jealous of my friends who don't need to worry about leaving the house in case their mom needs help, or who have been able to move out and live their own lives, but i do not want her living alone and if she had been living alone she wouldn't be alive right now. i refuse to just sit there and do nothing, and no one else will do it because they are angry that her addiction caused her to be sick and i understand that, but it doesn't mean she deserves to be abandoned and left alone to die, so it's hard to talk to anyone about it.
i'm sorry that you lost your baby. it must have been so hard to come home to find your mother in law in that condition right after having a d&c. how is your mother in law doing now? how long was she ill before being diagnosed with ESLD? my mom and i have only lived out here in utah for 6 months, and after her last episode of varices she ignored the gastroenterologist that treated her in the hospital when he told her to get a PCP, because of no insurance and very little money, so i don't have anyone to call about the blood tests, but she is now in california with her sister and has an appointment with a PCP on tuesday.
she is not being seen by a hepatologist, and has never been referred to one. every time she has been hospitalized she has seen a gastroenterologist while hospitalized and then her PCP after discharge, but the last couple times have been out here and she doesn't have one. to be considered for a transplant she will have to be sober for 6 months, and the only time anything about a transplant was mentioned was in december when the gastro who saw her in the hospital said something like "when the time comes, the university of utah has a great hepatology clinic and that's where they do transplant care", but from she only saw him a couple times after being discharged because she was in denial that she was sick enough to continue care with him.
we attempted to get her on medicaid while living out here, but she was denied because she was still a california resident (they use medi-cal). she would have been denied anyway though because after she stopped working and drained her savings, she had taken distributions out of her 401K, which counted as income. now there is only about 2,000 of that left, she's filing for bankruptcy and what's left of her 401K has been distributed to an account in my brothers name for safe keeping, so hopefully she will be able to get medi-cal now that she's back in california. my uncle has already gone down to apply for her. i'm very grateful that they are doing all that they are for her because after 4 years of no help, i was beginning to break. hopefully my mom and i can both begin to heal now.
thank you. dealing with this has caused me to mature quite fast and because i was the only one taking care of her i try to learn about everything i can so that i'm able to do anything possible. she has been in california for 2 days now. thank you for the honesty. i have never been told how sick she is, and she has never been followed by a doctor regularly since she got sick. in both california and here she's seen only gastroenterologists when hospitalized, and never has a referral to a hepatologist been mentioned. she would see her PCP on occasion to get the diuretics refilled when she ran out of refills, or make an appointment to see her as a follow up after discharge every time she's been in the hospital, but since we moved to utah in november she hasn't had a PCP. her sister made an appointment for her to see their PCP on tuesday, and i hope that they will be able to get some more information about her condition and will tell my aunt to ask for a referral to a hepatologist.
i am upset with the ER doctor because he didn't say anything about her liver other than to say she was confused because her liver couldn't clear out the ammonia. i don't even know if this is something that only happens in someone who is very ill, or if it can happen in someone with very little disease. everything i find online isn't very clear.
i'm well aware of doctors being reluctant to treat her because of alcoholism. she hates, hates, hates the hospital because of the way she was treated the first time she got sick. she said that they made her feel like horrible because she was there with something she did to herself, and telling her that addiction is a character flaw. she feels as though she doesn't deserve medical care because it is self induced.
i've read that lab tests aren't an indicator of damage. are enzyme tests used to give a hint that something may be wrong? that is awesome that you've been cancer free for 2 years! i hope that you will stay in remission and admire you for your strength. i get so frustrated that i don't have more information on all of this. i've read about symptoms of cirrhosis, and although every source varies on them, she has every single one (which makes sense because she has cirrhosis) and out of the complications that i just read about she's had several (hepatic encephalopathy, esophageal varices, both edema and ascites, gallstones, portal hypertension, jaundice, bruising) but i always thought that those were the symptoms not the complications? she has never had an MRI or a CT scan, only ultrasounds.
she is back in california and my uncle went down the other day to get her applied for medi-cal, but i don't know if she will qualify, because the last distribution she took out of her 401K counted as 20,000 in income on her taxes. she only has about $2,000 of that left, and her sister and brother in law are also helping her file for bankruptcy. i don't if they count look at "income" or at the current amount of money in her bank account. i know with SSI (because i get it) that you cannot have more than $2,000 in assets, which she doesn't. i do not know much about SSDI though, but my uncle is also working on getting that process started, but again i don't know if she'll qualify. she had a very successful career as a real estate loan officer and was making at least $250,000 a year, but when she got sick she stopped working and went through her savings quickly because of the life we once lived was an expensive one and she kept paying everything and wasn't responsible with the savings, thinking that she'd get better and be able to work again. when the economy crashed, she lost almost $700,000 of her investments in her 401K, and has pulled out and used almost all that was left of it to live on, besides 7,000, which was put into an account in my brothers name for safe keeping. i'm wondering if they will deny her for SSDI because she was making once making so much money or if she'd even be eligible for either because it was all self induced.
she quit drinking for 34 days starting in janurary and then started relapsed near the end of feburary. in april she got to sick to even drive down to the liquor store, but i'm not sure how long it's been now. she will not have any access to alcohol while living with her sister. they have made it clear to her that she will not be allowed to go into town alone for at least 6 months, they don't keep alcohol in the house and to get anywhere at all is a 20 minute drive because they live in the country. they also have said if she somehow relapses that they will ask her to leave because they can't have that happening. when she is well enough, her sister will take her to AA meetings. my mom has expressed the desire for sobriety and is glad that she is being given this chance, and knows that the structure will help her. i knew about the 6 month thing, but since i don't know a lot about this, i don't even know if she will be well enough in 6 months.
thank you again. i will check out the educational posts soon.
thank you for the response. it is overwhelming, but i don't think age has anything to do with it, taking care of someone you love is overwhelming on anyone. i am thankful that her sister is now helping out and has taken her into her home because i was getting drained and didn't want my mom's health to be sacrificed just because i was too exhausted to take care of her properly. i just needed a break because after 4 years it's gotten very difficult.
she is going to see a PCP on tuesday, and i'm going to tell my aunt to ask the doctor for a referal to a hepatologist, because all she's seen are gastrointerologists. my uncle is looking into the SSDI process, but i'm not sure if she will qualify.
my aunt and i talked about hospice care and it's something that will be done when the time does come. it is hard to think about it, but i know i need to face the realities of her illness. i hope both you and your husband are doing well, and thank you for taking your time to read my post.