My heart is broken

Hello, Mariel, and welcome to the forum. I can understand how you feel. Is it liver cancer that he has? If so, there is treatment available. I have had liver cancer (HCC) twice and I'm still here, though the 2nd time required a transplant. So a diagnosis of liver cancer does not mean that one is going to "die anyway." And it really doesn't sound like he's enjoying his booze these days. I agree that the bigger problem is his continued drinking, as he would not be eligible for transplant. UNOS requires 6 mos. of documented sobriety (such as AA meetings, an approved alcohol treatment program, etc.) He just doesn't want to go through alcohol withdrawal, although there are drugs that can help with that.

I also want you to know that during the times I had liver cancer, I did not experience pain. If your husband is experiencing pain, it could be gall bladder problems, enlarged pancreas, ulcers, or some other problem. Is he retaining fluid in his abdomen?

Acceptance of his continued drinking does not mean that you approve of it--just that you know there is nothing you can do about it. It's up to him. You have had a long marriage, but I can't say I would still be hanging in there with him in his very selfish decision. It may be his life, but what he is doing affects others, too.

You might want to check out the thread on here entitled Caregivers Sharing, where people in similar circumstances can offer info and support.

Hugs,
Connie

His cancer started in his throat. He had surgery, followed by radiation and chemotherapy a couple of years ago. It was the most wretched treatment that you can imagine. Since then, he has never recovered much of an appetite. He has never regained the weight that he lost. The cancer didn't show up again until a couple of months ago, but it is growing fairly quickly. All through his chest area. Not in the lungs yet, but the last CT scan showed a spot on the liver as well. In the meantime his liver started acting up. He has ascites, and is on medication for that. But he is having a really hard time with the alcohol. He manages for a few days, but I know he really doesn't want to stop.

His pain is complicated. He has had back problems for years, and now he has two large hernias, a ventral hernia and an umbilical hernia. With the ascites, he feels like his guts are going to explode. They were going to repair it, but he is not in any shape for another surgery until it is an emergency.

Most of our friends feel that if it were them, they would be doing the same thing, so I feel like maybe I am the selfish one, and I need to start letting go.

Hi 52, So sorry you have needed to find this forum.

It sound like your husband has given this a valient fight, but has given up the battle.

With the cancer metastesized to his other organs after a remission, and those hernias, I am sure he is discouraged.

The drinking is a problem. Can you imagine he may die of liver failure before the cancer gets him? That could happen. Dying of liver disease is not pretty. They can have massive bleeds from the esophagus or rectum caused by portal hypertension...with the liver not working, the blood backs up in the portal vein putting pressure on the veins in throat, stomach and bowel. They can even bleed out if medical attention is not quickly provided. The patient can have Hepatic Encephalopathy where they become confused or aggressive and make odd decisions and can't drive any more. Or the patient can become sleepy, slip into a coma and pass peacefully. You say he is alreay having some of the symptoms of liver disease.

Have you had a conversation with his medical team about whether it is time for pallative care? For hospice. And some nice morphine for the pain? He sounds like he is in a bad way.

Have you discussed putting his affairs in order, will, other estate documents, the house, car, etc.?

I did that with Mike, but now it is okay for a while. He quit drinking and had a liver transplant. His other medical problems are not so serious...heart, kidneys, Hep C...and he is also a cancer survivor, but no metasteses for now. So I am glad we had those discussions and I know he wants to be cremated, doesn't want a formal funeral, and wants us to celebrate his life when the family can be together...hopefully not for a long time.

Best, Mama Lama/Carol

You are exactly right, Carol. I think he is just so tired. Some days he doesn't feel like trying. Other times, he seems more positive, but it is getting harder and harder. I think it is possible that he could turn things around if he could quit drinking. But it is a monumental "if".


We have our wills, living wills, health care directives, all that is done.

Thanks Sandia,

I appreciate it. There really is a wealth of information here, and now I have a new list of questions for his doctor when we see him next week,

Maybe an appetite stimulant, and are the protein drinks that he likes too much protein? I thought that any calorie was a good calorie at this point, but maybe not. If he will only eat so much, then what he eats could be more important than ever.

Also I don't know if they have checked ammonia levels. He can't keep track of time at all, but I wouldn't say he is have "the crazies".

Marie

I have given him every one on the planet, he seems to like the Myoplex the best, but it is 42 grams of protein, and only 300 calories. Everything seems to be catering to low calories. They have a smaller one that is only 27 grams of protein, but I don't know the rest of the content.

I never thought he could have too much. His Popeye arms are smaller than mine now. : ( but when I look at the blood work, his protein is in the "normal" range. What is MCH? That is high

I will ask.

I use the Carnation breakfast myself when I don't feel like eating.

MCH = Mean Corpuscular Hemoglobin

Hugs,
Connie

Mariel , Sorry you have to deal with this . The ladies here brought up some good points , You know he is only sealing his fate with every drink . Can you get him to the keyboard ? Can you show him some of the cases where this disease has turned into a new lease on life even amongst those who still await transplant ? We have members here that are up in age and are complete success stories that fought a number of complications along with addiction .



A. Ziffle

I have been telling him about what I am reading. And he would have a cow if he new I was posting anything. He is pretty private, (hates facebook and all that ) but I have encouraged him to do a little research on his own.

He is trying with the drinking. we even talked about AA last night. That is the second time in my life I have heard him mention AA. And we have been married for 27 years.

Marie, bear in mind that alcohol is a depressant. The first couple of drinks may make him feel quite chipper, but after that it changes to self-loathing, depression, and/or finger pointing either to others or oneself. Hard to feel positive in that condition.

Hugs,
Connie

Mariel52,
Welcome. The first post you wrote..(how do I accept that the love of my life is dying)..is the same issue I have been dealing with for 13 months now. So that is what I will try to address in this post. My hubby and partner of 16 years has ESLD and now is in a nursing home with Hep C, cirrhosis and no interest in getting evaluated for a liver transplant. He doesn't drink, but has choosen to die a slow death, rather than take the risk of a transplant, so the issues for us wives are somewat the same.

How do I make it a bearable time for us...while we are waiting...and can I convince him to change his mind. We also use humor, also inappropriate a lot, to work through the hard times. He was always a joker, so that makes it easier. I wish I had a lot of anwers, but we just struggle through one day at a time. I was very angry, then heartbroken and pushy..and now I try to make what time he has left as painfree as possible and as happy as possible.

Sometimes I think we are back to denial, but now that we have make all end of life plans, he has made amends with those he needed to make amends with and he is still here...we plan a little fishing trip (2 hrs most), he is growing a few plants in his rooms, we play with the dog at the nursing home (15 minutes at most), and we take "virtual trips". He has always been a world traveler, so we now plan a trip and make up stories about what happens on the trip, what we see, what adventures we encounter. We are "going" Deep Sea Fishing (at our local lake) next week. Of course, sometimes, he is so sick, we don't do what we plan,,or cut it short (always need to be near a bathroom), but we are trying to make the end of our story together happy. Many times our "excusions" are just the planning to do it, and we never leave the nursing home, but to him it feels like he "went" somewhere.

I struggled with trying to force him to LIVE..through a transplant, but he is stubborn and has been through serious hospitalizations, so knows what that is like, so...I work hard to respect his choices. Only he can make that decision...kind of like your hubby. We tell each other we will be alright..whatever happens...I tell him I will miss him but will do okay without him (but I don't feel that way much of the time). He is bringing joy at the nursing home, because he is such a joker and teases everyone and says the old ladies in wheelchairs are "cougars" and pitch his butt. (I doubt it!!)

My heart goes out to you as this is really a hard road to travel. But post often, this forum has been very helpful. And...I like the ruckus and humor it brings. Will look forward to reading your posts.
Angie1953

M52,

  You might think about mentioning to the coming relatives that they will be shocked at how he looks.  My hubby's daughter came to visit and had not seen him in some time and I kept warning her that he looked bad, so when she actually saw him, she was prepared.  It is hard for him to see the shock in people's face, so I always warn them, so they expect the worse and then are not so shocked.

  I have thought of taking my hubby on a trip too, but just don't see how I could manage.  However....two of my really good friends who's hubands were dying, said the best thing they did was to take them on a trip  (One to Hawaii and one to Redwoods).  Can't really afford it at this point and just don't think I could physically do everything.

  Don't feel bad about being emotional about stuff.  It just happens in waves...when you least expect it.  Thinking of you.

Angie1953