Re: Visited with my brother yesterday.....

[Guest guest]

Hi Jan - Thank you!

I can really identify with you on " office people " , by the way. It

seems like the world is full of incompetence. I have a severe back

injury from a car accident a few years ago, and the office staff of my

very expensive orthopedist and neurosurgeon are difficult if not

impossible to deal with. I'm a baby sitter.

Good luck with your procedures.

Candy

>

> Candy - don't worry about taking up so much time, sending so many posts.

> From time to time, each of us comes to a point where we are the ones who

> need help. Then there are other times when things are calmer for us

and we

> are the ones who can help others. Yesterday was not one of the days

I could

> really help anyone else, witness my rant about office people. Jan H

[Guest guest]

Thank you just doesn't seem to be enough to express my gratefulness.

Everyone in my life I try to talk to about this situation gets

glazed-over eyes and I can tell they're not really interested in

listening.

You should be charging me $95/hour for this, ya know.

Candy

> > >

> > > Candy, if the doctor hasnt prescribed lactulose, one reason

could be

> > that he or she hasnt seen a lot of liver patients. I know that my

> > doctor is a family doctor, excellent at managing our care until we

> > both came down with severe and serious, possibly life ending

diseases.

> > She as much as admitted that this was wayyyy over her head. Also,

> > Lactulose is a very unpopular medication. It has been around since

> > world war two, but it was primarily used as a laxative. Being an

> > osmotic laxative rather than a stimulant laxative, you can take it

> > long term with no or little ill effects. But the loose stool

titration

> > is the unpopular part. Most patients complain and moan about it. I am

> > not one of those. I am so terrified of encephalopathy that I get

upset

> > if I miss a dose. I usually do not have a good reaction to missing a

> > single dose. I know that Ardis would un ravel if she missed one. She

> > would come unglued, and it was not a pretty sight. I have a

prediction

> > and that

> > > is that your brother at some point is going to experience an

> > " event " and his wife is going to call you, because he is going to

> > scare the -------- out of her. She will believe you, and she will

want

> > her husband to get on lactulose, and some of this wall will crumble.

> > Just a guess. That or she is Wayne tough.

> >

> >

> >

>

> --

> Jan H

>

>

[Guest guest]

Hi MaC ----

Yeah, been there, done that. She says she prefers to be positive. So

I let her. It would be so easy for me to be the " bad guy " , but I'm

just not going to do it.

I've been through a similar situation with my mother in law. She was

diagnosed with ovarian cancer at age 78. My husband's sisters

encouraged her to have surgery, chemo and radiation, but I was sure to

keep my husband grounded in reality. He thanked me for it in the end.

He did have difficulty with her decision to fight, but eventually

accepted it was her decision. Once again, she was given false hope.

Her surgeon was more like a car salesman and not a doctor. But I

digress...

I'm more comfortable with reality, and she's not. It wouldn't bother

me so much if it weren't for the kids. They have no idea. She

wouldn't allow them to visit while he was going through withdrawal

because he was tied up and talking out of his head. If my Dad was

dying and I was 12 years old, I think I would want to know. And I

don't think he " gets " the gravity of the situation.

Again, though, none of my business, they aren't my kids, and it's her

job to be real with him, not mine.

Thanks for the support.

Candy

>

> Hey Candy,

> I agree with Bob and Jan. You are more than welcome to take up as

much time as you want on this board. After all it's yours too.

>

> I wonder if your sister in law is going through her own denial.

Unless she is completely unaware that your brother is dying. Have you

tried being direct with her and say that from the advice that you've

received and based on your brothers symptoms, he's in end stage liver

failure and without treatment or help he will die? Maybe that would

open her eyes but from her comments that you posted, it may not.

>

> My heart goes out to you. This is a difficult thing to stand by and

watch.

> But know this, we all stand by with you.

>

> MaC

[Guest guest]

Hi Pamela,

This group keeps me sane. I would blow a gasket without it. I wish I

knew how to help YOU, though.

Candy

>

> I was thinking the same thing! We all need one another and this

forum is here for YOU, Candy!! Post away!!

>

> Pamela

[Guest guest]

I just don't get that at all. I'm sure I could find better things to

do than worry about my brother and research his illness, but I can't,

my heart won't let me.

Thank you for making me feel less guilty about all the time I spend

here.

Candy

>

> Yeah, what she said. You don't need to apologize. What you are

dealing with is very frustrating. I am moved by your love for you

brother. Mine won't even call, and when I was in the hospital last

year, he didn't come to visit. So, you take up however much space on

this board as you need to. Besides, I get a kick out of checking out

the numbers of posts on the home page month by month. This is a great

group, and it's utility can be measured and I am greatful we all have

come together here to help one another.

> Sent via BlackBerry from T-Mobile

[Guest guest]

Thank you, MaC...

My sister in law has a massage therapist license, so she's had some

medical training. I think she knows how serious it is, but chooses to

live in denial. I've told her that he's dying, but she continues with

the " I must remain positive " speech, without lifting a finger to help

him stay alive.

I don't feel alone in this anymore.

Candy

>

> Hey Candy,

> I agree with Bob and Jan. You are more than welcome to take up as

much time as you want on this board. After all it's yours too.

>

> I wonder if your sister in law is going through her own denial.

Unless she is completely unaware that your brother is dying. Have you

tried being direct with her and say that from the advice that you've

received and based on your brothers symptoms, he's in end stage liver

failure and without treatment or help he will die? Maybe that would

open her eyes but from her comments that you posted, it may not.

>

> My heart goes out to you. This is a difficult thing to stand by and

watch.

> But know this, we all stand by with you.

>

> MaC

[Guest guest]

MaC,

I have anger towards her too. She won't leave me alone with my

brother for even a minute. She wants to keep him in the dark??? None

of her behavior or attitude makes any sense to me.

When I read what you wrote about coma, I called her. She said she's

aware of the danger and won't let him get that sick without going to

the hospital. That's great, but who's watching him when she's not

home or when she's sleeping?

I gave her the honey tip, we'll see if she offers it to him.

I'm not able to visit him again until next week.

Candy

>

> I started out typing this whole long answer but when I re-read it, I

erased it because it didn't say anything except that I am mad and

pissed off at your sister in-law. I don't even know her!

>

> I wish I could come over and talk to your brother for only a short

minute. His time is short.

>

> Candy, let me be point blank. Your brother is critically ill! I've

seen the same signs with my wife. Being a sleep all the time is not a

good sign!

>

> There is a chance for him to slip into a coma from the

encephalopathy. This is the most common cause of death in cirrhosis

patients. So withouth the lactulose, he doesn't even have a fighting

chance. Hell ask him to take the two table spoons of honey three times

a day if he doesn't want lactulose. It should do the same thing.

>

> MaC