I'm new here

[Guest guest]

I've been a member for a week and gone back and read most all of your

posts. I appreciate the assistance, advice and support you all give

each other and feel a little guilty asking for help, but I thought if

anyone could help, you all could. Here's my story:

My name is Jan and I am helping a friend (Steve) who has several

issues—Cirrhosis being one of them. Steve has been deaf since birth

and also has a learning disability called aphasia, which means his

communication and comprehension skills are compromised. He is 64

yrs. old and after working for 30 years in a factory was laid off

when the factory closed. He is now on full disability with Medicare

and Blue Cross Supplemental. In March he was diagnosed with

Cirrhosis caused by fatty liver " most likely " . Unfortunately, Steve

has no family. (His only relatives are two half-first cousins who

are much younger and live 500 miles away.) He lived with his mother

until she died 4 years ago and now lives alone. While he does quite

well, he has extreme difficulty processing any kind of

communication. A childhood friend of his told his mother that he

would " look out " for him, but I think this diagnosis is more than he

bargained for. I am not a close friend of either of these people,

but was close to his mother and want to do what I can to make sure

Steve's taken care of. Of course, there's not a lot of money to deal

with either. Oh, and I forgot to tell you that the " caretaker

friend " is retiring and moving 300 miles away next summer. So, the

two of us are trying to get as much arranged for Steve as we can

right now.

Steve has gone through the transplant evaluation process, but quite

frankly, because of his communication difficulties, coupled with the

fact that he has no family for support, we weren't able to pursue it.

The Gastroenterologist says 90% of his liver is damaged and that his

life expectancy is 1-3 years. He had ascites which he is controlling

with Aldactone (1/2 pill each day). Last week he had a colonoscopy

and EGD and they found a couple of problematic blood vessels in his

esophagus, but the doc said " no big deal—recheck in a year. "

My medical questions are: 1) How much longer can he continue to live

alone? From what I read in your postings, most of you have

caregivers or family close by. I'm concerned that Steve may already

be in danger without someone there to monitor his daily health. 2)

Are there meds or treatment for the esophageal varices?

My assistance question is: What happens to people who have no one to

care for them? He doesn't have enough money for Assisted Living or

home care. He's not functioning badly enough yet for a nursing home,

however if his meds increase he'll have to go there. (He doesn't

understand written instructions and would most likely not take them

properly.) His SS Disability puts him above the poverty level. One

suggestion is a private pay case manager, but as I said, funds are

limited.

Meanwhile, he doesn't understand the severity of his illness. When

he was going through the TP evaluation he basically just thought it

was like replacing a battery and you go on with your life as before.

When we think he understands, then he comes up with something that

tells us it's clear he doesn't. And does he really need to

understand everything or just that he's very sick and to call " 911 "

if he experiences specific symptoms?

All your ideas, suggestions, and support are most appreciated.

You're all so knowledgeable and I feel so helpless. Thanks. Jan