I just lost my husband three weeks ago yesterday to End Stage Liver Disease, brought on by many many years of Alcoholic Cirrhosis. We'd been together not quite two years, and only married for 3 days shy of 3 months. I had no clue he had the disease when we met. He denied it all along, even to the doctors. When they would ask him "what brings you to the hospital today, sir?" He would say "low platelets." When they would ask him when he was first diagnosed with Alcoholic Cirrhosis, he would respond 2 years, or even 3 years. In reality, he had been diagnosed 25 years ago. By the time I realized he had it (I found a piece of paper from his doctor that had the diagnosis on it, and his name on it, and asked him about it, and he said it was a mistake, that it was actually his former wife's diagnosis), I was already in love with the man who treated me wonderfully, and who was everything my ex-husband never was. Our first 16 months together were wonderful. The only issue he had was having to go for N-Plate injections and blood draws weekly. No other symptoms, really. But then, in late March of this year, the ugly symptoms of ESLD began to show up in force. First, his feet and legs began to swell. They put him on meds to control that. But, as a side effect of those meds, his sodium plummeted and his potassium went sky high. He nearly died several times in the past few months. With each hospitalization, they would tell him that he had to limit his fluid intake to 1 liter per day, and no more than 2,000 mg. of sodium per day. I don't know if it was because his body was truly craving the salt (he never salted his foods beyond what was naturally in them before), or if it was just a mental thing, being told he couldn't have it, so he was determined that he would have it. During the time we had together, early on, he drank quite a bit, but was never mean or nasty, etc. Just repeating himself, slurring words, etc. As my former husband was an alcoholic, I knew I didn't want to have that life again, so I tried to get him to quit the alcohol. Silly me, I thought I was special, and had managed to do what no one in his family before had been able to do.... get him to stop drinking. The reality was, he simply hid it better, and didn't drink in front of me. He had asked me to marry him last October, and I said yes. He wanted to elope, but I wanted to wait until this summer, so my family could attend our wedding. He got very ill the week before we were to be married, and we had to postpone the wedding. That was the first time he'd had a bout with ascites. After that, it was a constant issue, having paracentesis on a weekly basis. But then, I think he got it in his head that as long as he was having the paracentesis anyway, he might as well drink as much liquid as he wanted, which he did. Many nights, after working a 10 hour day, I would try my best to keep him from taking in so much liquid. If I fell asleep, he'd drink 5 or 6 cans of soda, several glasses of ice cubes, whatever he could. The sleep patterns were so twisted, it was very difficult to keep a handle on what was going on. During one of his good days, he insisted that I re-set a date for our wedding. I finally settled on July 31st. Simple wedding, everything in our back yard, no big fancy wedding. When I woke up the morning of our wedding, I turned toward him, and he said "good morning, angel." I asked him how he was feeling. He said, "I'm fine. This is our wedding day." That was at about 6:30 in the morning. Sometime between 7 and 10, he made a run down to the closest convenience store and bought several 20 oz. bottles of V-8, and downed a couple of them as soon as he got home. I don't know what all else he had, as that day is a total blur, but by 1:00 in the afternoon, he was in a lot of pain, although he denied ever being in pain, and he wasn't making sense, couldn't sit still, very weak, swollen belly, etc. Our wedding day was horrible. I told him we needed to cancel it for now, and he refused. That was July 31st. After that, he went steadily downhill. Several more trips to the hospital. I won't go into detail about some of the strange things he did in those last days, but I will say that they were very much out of character for him, didn't make sense, and I think he was talked into signing things he never would have signed otherwise, or IF he even was told what it was he was signing. His daughter was set up as his power of attorney a year before I came along, as my husband had just lost his former wife to the same disease in 2008. We went from being very close, virtually inseparable, laughing, joking, enjoying life, making plans for our future before April of this year to, in the past 3 months before his passing, him basically shutting me out. I am convinced that his daughter has manipulated things, trying to completely shut me out of any rights as his wife. I don't know what horrible things she told him about me while I was working each day. I'm sorry, but she has no idea what I've gone through in the past 7 months, the things that I had to do for him, because no one else was there to do them. I loved him dearly, and I took good care of him. The last 3 months, she came over during the day while I worked, as I'd already burned all my sick leave and vacation leave, caring for him already by that time. That's when I started noticing a change in his attitude toward me. Anytime someone asks her, during her "legal issues for the estate" phone calls, if he had a wife, her reply is "what difference does that make? They were only married a short time!" She feels I should have no rights at all as a spouse. I'm sorry, but regardless of what she wants to think or how she tries to justify things, we were married, we loved each other, and no one twisted his arm to say "I do."
There are many things I could say that would set off alarm bells for you if you're going through what I went through. Things that were said or done that I never picked up on at the time. I was too focused on how I was going to get him through long enough to have a transplant. But that never happened.
All I'm saying is this.... If you have this disease, PLEASE don't put your loved ones in the position of having to guess what you would have wanted done with different things in your life. Not your funeral, not whether or not to cremate you, not who gets what in your house, etc. It's a horrible position to put someone in. I had no idea the myriad of things that had to be decided when I lost my husband. Some I had control over, and some his daughter (his POA) had control over. We didn't fight over anything. Far from it, we actually agreed on most everything, as far as the funeral plans, etc. But, I've come to the stark realization that she has been doing some very devious things behind my back. Money can do that to people. It can bring out the shark in a person that you would never have suspected would act that way. Protect yourself, protect your loved ones. Put it all down in black and white, and stipulate that it CANNOT BE CHANGED BY ANYONE ELSE!!!