Hi Every one!
(I just finished this, and I know it's long. I just needed to paint the picture....SORRY)
I'm new to the forum. I was searching the web for proper care for someone with ESLD, when I came across this site. My father has ESLD/HCV. I was reading everything, and felt like I could get some good information from people living through this themselves or through their loved one. I normally don't join forums, but I thought this may be my best source,and maybe give me some peace.
My father has HCV/ESLD. He lives in FL with his wife, (my step mom) now. I am a RN, and feel pretty helpless. First, this is not my specialty. Second, my father is a very difficult person. He is pretty non-compliant and does what he wants and hears what he wants. My step mom is his enabler, and relays his medical information to me. She is very protective of my father, and thinks she knows more than the doctors do. I'm not sure most of the time what is truth or misheard/misunderstood. I walk on egg shells when I talk to her because if I ask to many questions, she explodes and will say something like: I TAKE CARE OF YOUR FATHER, HOW DARE YOU QUESTION ME, through in some profanities and hang up on me. I try to offer advice very delicately to her re: his disease and treatment. It alwas falls on deaf ears. Being in the health care field, I have extremely low tolerance of people who are non-compliant. Once a medical problem is diagnosed and your informed, you should take responsibility for proper care. If you don't them you have to live the the consequences. I have tried to keep a low profile re: dad choices. He is an adult and there is nothing I can do to make him do the right things. To keep a peaceful relationship with my father, I respectively keep my input to a minimum.
My father was diagnosed with HCV over 11 years ago in NJ. At the time he was a HEAVY drinker. NY doc's gave him the ultimatum, stop drinking or die soon!! My father was a hard partier. He drank 7 days a week and ruined many family outings. He did make it to work every day. Although hard, he did quit after a couple of months. He did the whole interferon/peg for almost 10 years, but the viral load never went down. He was on the transplant list for NY, but was not in ESLD. My father did start taking pain medication at some point during this time for "PAIN", but never stopped. He also has been on sleeping pills for over 10 years. He worked the entire time until 3/12 years ago, when he needed to move to a warmer climate... Florida. He retired/went on disability. They moved down, and shortly after maintaining new DR's, they had him stop interferon. They couldn't beleive he had been on soo long if it was not working. He was put on FL. transplant list.
Last year, out of nowhere, I received a call from my step mom that my dad was in the hospital. He was trying to climb out of the bathroom window, and was confused. She had told me that his liver had caused problems and his ammonia levels caused him to be confused. At the time, I was in nursing school, and found out the complications of liver failure. My heart sunk. I tried to explain to her some other things that may happen, and asked her to try to keep me better informed of his condition. It didn't go over to well. My father stuck up for her and said "She is my wife, and she takes care of me. Don't question her, just get along". To keep the peace, I backed down. Step mom mentioned to me that she was giving dad a healthy high protein diet to build his muscles back up. I explained to her on many occassions how the liver couldn't break down excess protein, and that is one of the causes of the high ammonia. I told her to look into a protein restricted diet with dad's doctor. She never acknowledged my advise.
My step brother (step mom's son) moved in with them in the summer. He followed his girlfriend down. He is one of those free-loading, can't hold a job, lazy types. Prior to him moving down, my dad and step mom have paid for numerous late insurance, bounced checks, reinstatement of driving lic. etc. My dad finally tried to cut him off, but his mom sent him money on the sly. My dad and step brother have a very volitile relationship (no physical abuse, just extremely lound and verbal). My father gets aggreavated with his "son's" behavior, and let's him know it. In return, my brother has no problem talking back to him, or "humoring" him.
I went to visit my father in Sept. I couldn't beleive that was my father in front of me. He was week, had a stomach full of ascites, legs swollen, varies on his stomach. He was still asking for his pain meds and sleeping pills, and stepmom was still giving them to him. My father still was taking pain meds every day and sleepers at night. I had continually questioned step mom on the meds. Concerned that meds get broken down in the liver, poss. contributing to his worsening condition. She said that he only take a certain small amount every day, and the doc's say it's OK. While I was there he had a bout of encephalopathy. He was very sleepy, and giddy. He was refusing his diuretics and lactulose becuse he was sick of going to the bathroom. I told my dad it's good thing i didn't live near him because we would be battling over his stubborness and refusal of meds. In between his confusion, by father was still able to scold my step brother, and brother had no problem catching attidtude back at him. Our whole weekend was a plenthora of Protein. My step mom cooked Red meat here, chicken there, etc. I gently offered some advice to stepmom, and she still didn't acknowlede. I asked her to double check with her doctor re: his diet, she said in passing OK. I explained the importance of the meds to dad re: them getting rid of the "stuff his liver couldn't" to keep ....alive.
When I returned home I faxed step mom some info. from my nursing book. It was alittle harsh to read some of the complications, but felt it was necc. She called me alittle shocked, and said she would check into the diet. Finally, I felt some accomplishment. I told her that if she needs me to talk to the doctors for her, or check into anything, I would. I told her that because i was in the medical field maybe i could get somewhere. She declines. The only doctors name i've heard, i've looked up and can't find anything. I only have a last name. I don't even know what kind of specialist he is. If I ask her out right, it will be and explosion.
I had decided that the next time I would see my dad, would be when he has his transplant. His MELD score was averageing 14-16. In Oct. and Jan. had received calls for transplant. They went to the hospital, he was admitted, and both times the liver did not pan out. Apparently, the donor list has back up donors, and he was the back up for both. After the Oct. call for transplant, step mom said the doc said to try to stop the pain med and sleeper. He said that they are really aren't affecting him due to his condition, and at this point it's not helping his ESLD. Then a few days later, she said the doctor said it was ok for him to have 1 pill a day.
My fathers condition has worsened, and my step mom works full time for the medical benefits. He is falling all the time, so far with out any fractures. He had been home alone alot, According to step mom, "son" (step brother) is a big help with daddy, he stopped working to be home with dad. He even helps clean dad with his accidents. But somehow, my dad still falls, and wonders the house. I'm not sure what kind of supervision my step brothers giving. My cousin had visited them recently, and said that step brother eats and sleep in his room all day. He wouldn't hear a bomb go off. (he sleeps with CPAP for sleep apnea).
In March, dad's MELD score went to 18, and he was #1 on the list for his blood type. Step mom was voicing concerns of her work, for missing so many days. She was considering leave of absence/cobra. But with the new score she was going to hang in there. I mentioned to her to check into home health aid. She said NO, and that she did not trust those people coming to take care of dad. They would abuse him and treat him bad.
He received a transplant call a week later. They went to the hospital, and it was a go. Before my father went off to surgery, i spoke to him on the phone to give him my best. He was confused and said the men were working outside in the garage, with the garage door opener. They took himto the OR, and i booked a flight/took off work. Step mom called 2 hours later. The surgeon had just come out and cancelled the surgery. They found cancer underneathe the donors liver. The next day, I called the hospital to check on him. According to step mom, the hospital wanted to discharge immediately after the surgery was cancelled, but she told them NO!! He's confused, and dehydrated. She said the whole night she was his nurse, and had to change him. Then in the same breath she said that she wanted to take dad home ASAP, and the hospital wouldn't discharge him. They told her if she left with out discharge that the insurance wouldn't cover. She told me "these people don't know what there doing, he needs to go gome, because that's the only place he will do better".
I called a few days later to check on dad. He was doing better, and knew he didn't get the transplant. He was dissappointed but knew that he's still next on the list. Step mom started voicing concerns of taking leave of absense from work again. But financially not sure if they could do it. She wanted me to talk to my dad. I gently asked her to look into some kind of home health car for a few hours a day to relieve her son for a few hours. She said she would check into it.
Sunday, I called for Easter. Step mom said, please talk to your dad. He's giving me a difficult time. He fell in the bathroom, and hurt something. He was afraid to walk. He is also keeps asking for his pain meds even after she gave him his dose. I told her he should get him XRayed. She said he was getting better. She would wait until tomorrow. The next day I called her to check on him. She said it's his knee that he hit, and he is doing fine.
Tonight she called me. She wanted me to talk to my dad because he listens to me. She wants him to relax so she can sleep and go to work tomorrow. He is giving her a hard time. He was yelling at her to take him home now. He doesn't understand why she is keeping him there. Why was she treating him like a 3 year old? I told her not to take it personal.. It's not his heart talking, it's his disease. She put him on the phone, and he repeated the same, asking why can't we take him over the mountain? Why can't you throw me in the shower? I spoke very calm and soft, and said step mom is taking care of you out of love, and that your alittle confused, but I know your home because stepmom called from home. He said Yeah, and hung up.. I called back.. You can hear the wear and tear on her. She told me her sister was coming down for a few months to help. I asked if there was anything I could do. She didn't really say much. I asked if she checked into the home health aid. She said insurance won't cover unless he is hooked up to something. I offered to call the doc's to see if if could find out anything, she still didn't say anythng. I then asked if she wanted me to come down for a few days to help. She said she would really like that. I offered again to call the DR's in meantime, and she said yeah ok when you come down. I advised her that dad's heightened confusion concerned me and she should prob. take him to the ER to check him out, take blood, and maybe he needs his meds adjusted. She said she just gave him a sleeper, and he's calm now. I told her to watch for more changes in his mental state, because he could go into a coma. She said she would call an ambualance if he didn't stay settled. I told her to keep me updated, and i would look into tickets for Sun.
When I get down there I would like to speak to his MD immediately to find out the best way to care for dad right now. I'm concerned how that is going to go over. I don't mind helping stepmom out for the week. But I need to know that all the right stuff is being implemented. If they are leaving things out or not going to comply with the right thing for him, I don't think we are going to have a peaceful visit.
My questions to anyone who knows....... What can I do? What right do I have or should I have as his daughter. Does anyone know about the use of pain meds and sleeping pills in ESLD. I believe stepmom is his healthcare proxy, and he has made it clear in his normal state that she is his keeper. She's the one to take care of him. He is a difficult person to rationalize with normally. I've never gone over stepmom's head by trying harder to find his doc's. I'm not sure if they can release his type of care to me, and if soo would they tell stepmom. I wanted to try to keep somekind of relationship with dad. But now I think that it's time for me to be alittle more aggressive with her, and if that fails, go over head. Atleast for the correct answers. Maybe she has been telling the correct stuff, but somethings don't sound right. Does anyone have any advise. I'm calling her in the AM to check on him. If he is better, than all is well until i go down on Sun. If he's in the same state, and she hasn't/or is not calling the ambulance, I feel I should call 911 from here (NJ) to get him. Is that the right thing to do? I also looked up the transplant team, and the one doc's name to poss. make some calls tomorrow for info. Any help is appreciated!!!! Please...