Watching him waste away......

Not sure how I got here but here goes...

Back in April of this year I noticed my husband of 16 years had lost weight noticably, lost his sex drive and his face looked yellow. Of course  when I mentioned it refused to go to the doctor. He had been passing blood and eventually vomiting blood but kept it from me.  One night in May he woke me up and said he needed to go to the ER.  He was in the hospital for a week, lost a lot of blood.  They put 5 bands on his esophagus and stomach(varices).  The doctor said he showed some liver damage and needed to stop smoking & drinking immmediately and made an appoint at the liver clinic.  He never went and didn't go to the follow up. Quit smoking for 2 weeks but continued drinking. He looked a little better for a couple of weeks but started looking tired. He is depressed, he is on a water pill because his abdomen, lower legs and ankles are very swollen. He can only work a few hours a day and sleeps 13 hours a night and then 5 or 6 in the afternoon. He keeps saying he will be dead by Christmas, refuses to tell me anything the doctor tells him. He has lost all the muscle mass in his arms and looks like a skeleton, gray skin. Is this what end stage is? He has an appointment the 29th with the liver clinic.

I have no idea what's going on....

im so sorry about what you are going through and yes it is exactly how my mom looked for the last stages of her life but he can turn it around. all he has to do is quit drinking and fight to live. but to me it sounds like he has given up. do you have all your ducks lined up, a will and all that. even if he lives another year or two or more it will be good to have the arrangements all in order.

Wondering, have you heard anything yet?  They may want to drain him.

Hugs,

Connie

Oh I forgot..tomorrow they are checking on the bands they put in when he was bleeding in May.

Hubby got back from the ER yesterday, he wouldn't let me into his room..I had to pick him up in front of the hospital.

Primary Diagnosis-Ascites  Secondary-Acute hepatitus

He is on Lasix 40mg 2x a day   Nadolol 10 mg a day

Spirononlactone 200 mg a day

He isn't telling me much.

Wondering,

It is too bad he got to the grouchy phase before you were well inserted into his treatment.

I agree with PG, that he likely doesn't hear all that is told to him. It is possible to stop his disease from moving forward by taking the meds and taking care of himself.

At our house I have taken over putting the meds in a week case as there are so many and it is confusing...before meals, after meals, 3 times a day, once a day. Like a chemistry experiment trying to balance all of it.

Also I am working on is social Security Disability application. that is totally beyond him, but his labs indicate he is eligible to collect his Social Security early, so it is stupid not to fill out the forms. He could not do it to save himself.

In addition, we have discussed his End of Life decisions and put the legal papers in place so that I can do what he wants and not have any problems with the hospitals, docs, or lawyers. I have his power of attorney now and his medical directive and a DNR. It is important, and the laws vary state to state.

If he didn't want me, he has a grown daughter that could do it, so she is his back up.

I wish you the best. this is difficult at best, and nearly impossible with an unwilling loved one.

My hubby is going through a grouchy phase himself and I am sometimes ready to give up. But we go on and on and on.

Try to find some things to be thankful for on this day of Thanksgiving. ML

He quit drinking for 2 weeks back in May with the first hospital visit. He started back "just on the weekends". He stopped all together mid October and has not had a drink since. He still smokes a pack a day though.

Hubby had the first of 3 Hep vaccines today. I've been trying to educate myself but want to know why if he has been diag. with Hep why the vaccine?

ok, he missed his dr.'s appointment yesterday (since he refuses to let me know anything) becaue he thought it was today. Yesterday afternoon he was vomiting, blamed the coffee he had in the afternoon. I cannot function, but have to. My 15 1/2 and 14 yr old know it's bad but I can't tell them anything because I don't know any more than they do. He works 2 or 3 hours then sleeps at work for a while, works another hour or two comes home and sleeps 3 or 4. Yesterday I found blood drops on the sheet. He tells me he's fine and that by drinking the protein shakes he will gain weight and be better. I saw him this morning without a shirt on, waited until he left then cried uncontrollably. 

Rick, you're barking up the wrong tree if you're expecting me to remember much of anything!  I've got that CRS thing and don't know if it's from the hep or age...but it ain't fun.

Wondering, your hubby is obviously in deep denial...not only to you, but probably also to himself.  The drops of blood may be from a nosebleed--somewhat common in folks with esophageal varices or clotting problems.  If you ever see him bleeding profusely or vomiting blood, call Rescue or get him to the ER pronto!  He could bleed out and die in no time unless he gets immediate medical care.

He's rather foolish to continue trying to work (trying to appear normal...another form of denial) and should really be applying for SS disability.  Of course, then he would have to write down what is actually going on and what his diagnosis is.

I know how hard this must be for you.  We are always here for you.

Hugs,

Connie