Update on Brother with ALD

Cat, I think helping him get an appointment and insurance arranged for a transplant evaluation is one thing you could help with now. His MELD means he is very ill, but all we can do is hope he will remain stable long enough to get his sobriety requirement. But your brother must make his own choice. Has your brother talked with the doctor about a transplant? If so, he may refer him. Make sure you get an appointment where they accept his State Insurance. The 4 weeks will soon be here, so that is a good thing to start with. Next time you visit, have your brother call SSA and check on his claim. Since he is terminal without a trasplant, his claim may be expedited.

Now...the hard part. Since your brother is able to make his own decisions, where he goes when he is released is his call. I know you are scared of what may happen. I recall he has a Dad and brother, as well as you and his girlfriend he lives with. Perhaps your family members can all take turns helping him get to appointments, visiting him while his girlfriend is at work, and even haul him to AA meetings. How long until the LTAC plans to release him? I know your priority must be your children and marriage first. And it should be. Don't beat yourself up with guilt. You have a good heart, Cat. Not many would pick that torch up again, as you did. Big, big hugs.

Catgirl23 said...

Honestly, I think I'm just worried about him going home she not taking care of himself and staying sober. At least when he's in a facility he's getting his meds, eating, and not near alcohol. But I know it's all up to him.

Cat.You want to have a 37 year old man in-patient in a nursing home so he won't drink. Think hard on this. Your brother already quit PT in the LTAC last week. Big Hugs

Cat, I will let you in on a little secret. I am scared and worried every. single. day.

Go hug your kids, kiss your husband and get some sleep. You can not fix all of the broken things. You will do the next, right thing. Big Hugs

No Dr has said "terminal". As far as prognosis......I've heard many drs opinions (he's been in 4 facilities). One dr said 1 month, another said 3....another said he could possibly make it to a transplant of nothing else happens (kidney issues, infections etc). Overall recently his Dr's at the LTAC just say "his prognosis is poor".

Thank you. I will have to look into that for sure and hopefully his state insurance will cover that. I'm so upset.....they discharged him from the LTAC last night. His case worker there told me that no nursing homes would accept him due to his age, the alcoholism, and the fact that he is "medically stable". His case worker called me yesterday morning talking about releasing him later in the day. I told her I had to contact my brothers girlfriend first since he'd be going "home" to her house. Hours later, the case worker called me again, after she talked to my brother about going home and asked if I had talked to his girlfriend. I said no, and the case worker starts telling me she'll arrange for a "med car" to pick him up at 6pm and take him home. I was thinking, hold on, I don't know what time she'll be home. I feel like they were in such a rush to kick him out. Turns out his girlfriend was able to get there last night to pick him up, however, even after his case worker assured me he would have all his written prescriptions and follow up paperwork, none of the nurses seemed to know anything about it. No one could find any paperwork for him, they gave her phone numbers of answering services to call the Dr's but no one returned her calls. Just a huge crazy run around. She brought him home because he was so tired and she was so upset. This morning I contacted the liason for the facility, who contacted the CEO, who contacted the nurse supervisor. They are supposed to be taking care of getting his prescriptions called into our local pharmacy this morning. The nurse supervisor said this happened because it wasn't a planned discharge. What???? I explained that I felt like the Dr and case worker were rushing him out. It's not like we just decided to have him leave. Ugh, I'm just very upset with the whole situation at the LTAC. Anyways, he's home and doing well it seems. Now the real journey begins.

I completely agree. I've been in contact with the liason for the LTAC and I have the contact info for their CEO. You bet your (you know what) I'll be writing a written complaint to them!! So many things were done very unprofessionally there. Did I ever mention about his first nurse who while on the phone to me, puts the phone aside and referred to my brother to another worker as "the yellow guy"?? WOW!

I will definitely be contacting hospice or pallative care.

"The yellow guy"?! I would have been tempted to tell the nurse that if she ever referred to my brother as 'the yellow guy' again, people would be referring to her as the 'black and blue lady'!

Yes, I will be calling on Tuesday after the holiday weekend to make an appointment for an evaluation. Either I or his girlfriend will call Tuesday to make his follow up appointments with Dr's as well in the meantime. We have many local AA facilities in our town as well so I'll get him a schedule and hopefully he can start attending as long as he's feeling well.