Jump to content
Online Grief Support, Help for Coping with Loss | Beyond Indigo Forums
  • Announcements

    • ModKonnie

      Advertisements   09/05/2017

      Hi all,  I'm sure you've noticed some changes in the forums. We've again had to do some updates, so that's why things may look a little different. Nothing major should have changed.  Also, we are going to start adding advertisements sensitive to our community on the boards. This is something we are experimenting with, and we will certainly make sure they are in the best interests of everyone. We want to make sure our forums continue to stay accessible and cost free to all of our members, and this is a way to ensure this.  If you have any questions or comments, please feel free to privately message me or email me at Konnie@beyondindigo.com.  As always, we will be here with you, ModKonnie
tkrx5rn

Watching my sweetheart die of liver disease...

Recommended Posts

Sher   

I never wanted to join a forum like this but am thankful that it is here. Back in 2007 my dad made it to his 90th birthday and then started fading away. He died on December 20, and I'm still not over that. I then met a guy who I clicked with when I was up north, and ended up bringing him down to Florida with me where we had a pretty happy life together. Except for one thing. He was an alcoholic and could not stop drinking the poison. It was no fun when he was like that but the days he didn't drink were great! He helped me take care of the house and we did everything and went everywhere together. The last thing we did was plan a trip to Panama, but now that won't be happening. He took his last drink in January when I rushed him to the hospital because he was bringing up blood. The doctor mended the acites and varices and let him come home. Things were looking good again but a few weeks later in spite of all the meds he was taking, his ammonia levels shot way up and it was another 2 week hospital stay. We talked to the liver doctor. I offered to give him part of mine as a donor but the doctor looked at me like I was nuts and said he is not eligible for the transplant list because he would never survive the surgery

A few more days went by and again his ammonia levels went way up again and it was another stay in the hospital. But this time he didn't come back home. Now this is his 3rd week in the hospice an he is now fading away. Last night he woke up all agitated and wanted to go home. I said no we couldn't do that for a few days. Now I sit here tonight and his eyes are slightly open and he is either asleep or in a coma. I don't think he has much time left now. I told him everything I had to say and apologized for ever hurting him but we did have more good times than bad times. And now I see him sleeping there not even moving and it is just ripping my heart outl

There is only one way I can even cope with any of this without losing my mind and that is to think of the bad times because it makes me angry that he couldn't stop drinking, or that there is still no help to get someone to stop unless you are a billionaire (which I am not). The doctor in the hospital told us that this is the end of the road for him because his liver is gone. It's a horrible way to go because it doesn't take you quickly. When the ammonia hits your brain it confuses you and that's got to be terribly frustrating. I can't stand watching this and hurt so bad for him because he had a big heart and would do anything for you. Why don't they make alcohol a controlled substance, that and cigarettes? They sure do kill enough people and cause enough heartache.

When this thing is over with, I will be one hardcore woman. Because it is just tearing me to pieces now. I can't even imagine what a normal life must feel like. But at least I'm stuck in Florida, I guess there could be worse places to be stuck in. He loved it too. Even my fierce pitbull has been moping around, knowing daddy isn't going to be coming home. It's like she and I just cry and cry together. I hope I can pull myself together after all this. It's like I don't want anymore friends because it's too hard to lose them. I didn't even want a dog, but now I have a protector since daddy's about gone. I don't have the money for counseling, but I'm telling you, I could sure use some now. I am slowly losing my strength to go through anymore. I feel like throwing in the white towel.

Share this post


Link to post
Share on other sites

Sher,

I don't know why they don't make alcohol a controlled substance, but they should. I am so very sorry you and your mate are going through this. You will get through this. You are doing what you need to do by taking this Just One Day At A Time. Don't try to look way in the future. Just keep focused on a little at a time. I watched my father and my mother-in-law die very slowly. It was horrible, but in the end, we made it through. Please find people to talk to. Get help through Hospice. Join the grief support group. You can do this. Please know that you are not alone. We will be here for you.

ModKonnie

I never wanted to join a forum like this but am thankful that it is here. Back in 2007 my dad made it to his 90th birthday and then started fading away. He died on December 20, and I'm still not over that. I then met a guy who I clicked with when I was up north, and ended up bringing him down to Florida with me where we had a pretty happy life together. Except for one thing. He was an alcoholic and could not stop drinking the poison. It was no fun when he was like that but the days he didn't drink were great! He helped me take care of the house and we did everything and went everywhere together. The last thing we did was plan a trip to Panama, but now that won't be happening. He took his last drink in January when I rushed him to the hospital because he was bringing up blood. The doctor mended the acites and varices and let him come home. Things were looking good again but a few weeks later in spite of all the meds he was taking, his ammonia levels shot way up and it was another 2 week hospital stay. We talked to the liver doctor. I offered to give him part of mine as a donor but the doctor looked at me like I was nuts and said he is not eligible for the transplant list because he would never survive the surgery

A few more days went by and again his ammonia levels went way up again and it was another stay in the hospital. But this time he didn't come back home. Now this is his 3rd week in the hospice an he is now fading away. Last night he woke up all agitated and wanted to go home. I said no we couldn't do that for a few days. Now I sit here tonight and his eyes are slightly open and he is either asleep or in a coma. I don't think he has much time left now. I told him everything I had to say and apologized for ever hurting him but we did have more good times than bad times. And now I see him sleeping there not even moving and it is just ripping my heart outl

There is only one way I can even cope with any of this without losing my mind and that is to think of the bad times because it makes me angry that he couldn't stop drinking, or that there is still no help to get someone to stop unless you are a billionaire (which I am not). The doctor in the hospital told us that this is the end of the road for him because his liver is gone. It's a horrible way to go because it doesn't take you quickly. When the ammonia hits your brain it confuses you and that's got to be terribly frustrating. I can't stand watching this and hurt so bad for him because he had a big heart and would do anything for you. Why don't they make alcohol a controlled substance, that and cigarettes? They sure do kill enough people and cause enough heartache.

When this thing is over with, I will be one hardcore woman. Because it is just tearing me to pieces now. I can't even imagine what a normal life must feel like. But at least I'm stuck in Florida, I guess there could be worse places to be stuck in. He loved it too. Even my fierce pitbull has been moping around, knowing daddy isn't going to be coming home. It's like she and I just cry and cry together. I hope I can pull myself together after all this. It's like I don't want anymore friends because it's too hard to lose them. I didn't even want a dog, but now I have a protector since daddy's about gone. I don't have the money for counseling, but I'm telling you, I could sure use some now. I am slowly losing my strength to go through anymore. I feel like throwing in the white towel.

Share this post


Link to post
Share on other sites

Sher,

I don't know why they don't make alcohol a controlled substance, but they should. I am so very sorry you and your mate are going through this. You will get through this. You are doing what you need to do by taking this Just One Day At A Time. Don't try to look way in the future. Just keep focused on a little at a time. I watched my father and my mother-in-law die very slowly. It was horrible, but in the end, we made it through. Please find people to talk to. Get help through Hospice. Join the grief support group. You can do this. Please know that you are not alone. We will be here for you.

ModKonnie

I never wanted to join a forum like this but am thankful that it is here. Back in 2007 my dad made it to his 90th birthday and then started fading away. He died on December 20, and I'm still not over that. I then met a guy who I clicked with when I was up north, and ended up bringing him down to Florida with me where we had a pretty happy life together. Except for one thing. He was an alcoholic and could not stop drinking the poison. It was no fun when he was like that but the days he didn't drink were great! He helped me take care of the house and we did everything and went everywhere together. The last thing we did was plan a trip to Panama, but now that won't be happening. He took his last drink in January when I rushed him to the hospital because he was bringing up blood. The doctor mended the acites and varices and let him come home. Things were looking good again but a few weeks later in spite of all the meds he was taking, his ammonia levels shot way up and it was another 2 week hospital stay. We talked to the liver doctor. I offered to give him part of mine as a donor but the doctor looked at me like I was nuts and said he is not eligible for the transplant list because he would never survive the surgery

A few more days went by and again his ammonia levels went way up again and it was another stay in the hospital. But this time he didn't come back home. Now this is his 3rd week in the hospice an he is now fading away. Last night he woke up all agitated and wanted to go home. I said no we couldn't do that for a few days. Now I sit here tonight and his eyes are slightly open and he is either asleep or in a coma. I don't think he has much time left now. I told him everything I had to say and apologized for ever hurting him but we did have more good times than bad times. And now I see him sleeping there not even moving and it is just ripping my heart outl

There is only one way I can even cope with any of this without losing my mind and that is to think of the bad times because it makes me angry that he couldn't stop drinking, or that there is still no help to get someone to stop unless you are a billionaire (which I am not). The doctor in the hospital told us that this is the end of the road for him because his liver is gone. It's a horrible way to go because it doesn't take you quickly. When the ammonia hits your brain it confuses you and that's got to be terribly frustrating. I can't stand watching this and hurt so bad for him because he had a big heart and would do anything for you. Why don't they make alcohol a controlled substance, that and cigarettes? They sure do kill enough people and cause enough heartache.

When this thing is over with, I will be one hardcore woman. Because it is just tearing me to pieces now. I can't even imagine what a normal life must feel like. But at least I'm stuck in Florida, I guess there could be worse places to be stuck in. He loved it too. Even my fierce pitbull has been moping around, knowing daddy isn't going to be coming home. It's like she and I just cry and cry together. I hope I can pull myself together after all this. It's like I don't want anymore friends because it's too hard to lose them. I didn't even want a dog, but now I have a protector since daddy's about gone. I don't have the money for counseling, but I'm telling you, I could sure use some now. I am slowly losing my strength to go through anymore. I feel like throwing in the white towel.

Share this post


Link to post
Share on other sites

Oh, I can't imagine what you're going through right now, but the pain and emotions you described are completely understandable. Anyone would be struggling in your shoes! But, I hope you'll let yourself grieve and work through what you're feeling. And, I think you're right-a counselor is invaluable for getting through times like these. However, I know finances can often make that challenging. So, maybe a support group would be a good avenue to look into. There's usually no cost for something like that. And, maybe your doctor or a local church or hospital could connect you with one? Also, I know from my time at Focus on the Family that they have free counseling available over the phone, so please know that's always an option. This article here and here might also give you some guidance for the present. Well, know that someone out there is praying for you. I hope you won't hesitate to reach out for some support. ((Hugs))!

Share this post


Link to post
Share on other sites
Sher   

Thank you so much for the replies, and thanks especially for the link "Focus on the Family" with the list of counselors who will talk to you on the phone. My sweetheart passed away on May 1 and I was there when he took his last breath. It's like he could hear me telling him how much I will love him forever. He tried to open his mouth twice and than just stopped breathing. This is the cruelest thing I have ever been through in my life. I knew he was sick but I didn't think he was going to die. The whole thing cost around $200,000 with the doctors and hospitals and not one told me even years ago that his liver was shot, or that they could detox him, or any of that. I got so desperate I planned a trip to India, where they will only do donor transplants for foreigners. I didn't care, I wanted to give him how ever much of my liver he would need or at least see if it was compatible. Only to hear he was not strong enough for the surgery. No doctor helped at all over the years and I had no idea he was even to this point. I thought the medications could hold him for awhile. But this is a horrible disease, how ever it is caused, the symptoms are the same. His mom was here and we had 3 nice days together before this sneaked up on him for the last time. He never really recovered from it and the only thing we could do was take him to the hospice where they would at least keep him out of pain. This is so horrible, I need to talk to a religious person, a doctor, a psychiatrist, because I can't get over it. I will be fine and then it will come into my mind and I'll start crying all over again. This is going to take a long long time.

One of my problems is that I lost my job, and cobra ran out. I had to have half my thyroid removed and thank goodness I still had the money to do that, but now that money is gone, as is any hope for insurance. Or even a full time job for that matter. I can't even think straight, much less concentrate on work. I'm happy to have my part time job which doesn't pay much, but does take my mind off everything and does offer lots of extra hours.

So here I sit in my living room with my beautiful dog. She knows something is very wrong. I feel like the last 5 years were nothing more than a blur, and watching him die was an eternity. I begged him when he was alive to please cut back the drinking, and don't put me and his family through this. But you cannot stop an alcoholic. He had lots of problems such as 4 other people using his social security number and him getting hit with having to pay $15,000 in taxes. Forget dealing with the IRS too, another impossibility, the right hand does not know what the left one is doing.

People tell me to stop thinking about it, and to think positive. That's like telling someone not to itch. The thoughts just creep into my mind and depress me terribly. The Hospice must think that only old people die. Their grief support hours are during the working day, when the rest of us are also at work. Nothing at night. The next church group starts in August. I need help now, not in August. Psychiatrist? Well, along with him went the extra income. I'm doing good by keeping the roof over my head and food on the table. Yes, I have an internet connection, but no fancy car and no iphone. I'm thinking of moving somewhere again, always running away from the problems yes. I need a change of scenery. Would love to move to the mountains of Panama, I could actually afford to live in the expat community there and maybe even afford to see a doctor.

You know what I think? I think that the liquor and tobacco companies that offer addiction and sickness to the population should be responsible for it. There are people who have addictive personalities and there is even a genetic link. They should have to pay the medical bills for every alcohol and tobacco related sickness, every last one. Yet get caught with one xanax and you'll go to prison for years, that's the way it is in Florida anyway. I am just so down, depressed, and mad. It cost $1,500 to have him cremated and his mom took his ashes back north. They will have a private mass (they are Catholics and Peruvian). And then they will bring him back to me where we will take him out to sea, off his favorite beach, the same place where I want to be when my time is up.

His brother told me me that he dreamed that he saw him and in this dream they hugged and my sweetheart told him not to worry, that he was alright. His brother told me he was with someone he couldn't identify, possibly his guardian angel. Why doesn't he come to me?? You see what all this has done? How do people get over it? My father died 4 years ago and I'm not even over that yet. Something good has got to happen now because I can't take much more of this.

I took a fighting course a few years ago (krav maga), the hardest thing I ever did. I took it for self defense and to strengthen my mind, thinking it would make my mind the fighter that I became. Except now I'm about to just give up.

Even a forum like this is so very helpful. When I get over this I will come back in a different frame of mind and try to help others get through the pain of this. I just keep seeing him lying there at the Hospice, too weak to move, getting weaker by the day. It took about 10 days without food and water, but toward the end he didn't even want any, he couldn't even swallow. So I suppose the Lord (I'm a Christian) provides for us in ways we don't understand. I sure don't understand. The only thing I understand is that I need to get this out of my mind and stop re-living those last days over and over and over. I hope time does the job, because this has been a horrible couple of months. I'm sorry to go on and on, I need to get it out, so thank you for reading.. As bad as it sounds, knowing I'm not the only one going through this hell helps. My best girlfriend just lost her husband as well. She's right when she said misery loves company. We are both beginning to wonder who we ticked off so badly, and how to set things right again.

Share this post


Link to post
Share on other sites

I saw your post, and im sorry if my help is alittle late. I had my three year old brother who was terminally ill pass away in 2010. He was in the hospital for three months undergoing surgeries to extract tumors, until september of 2010 when he was sent home for in home hospice. I have felt the same way you're feeling about not wanting to have friends. The year after my brother died i did have some friends, but when i found out my other brother had a blood disorder i flipped. I started pushing my friends away and pushed my boyfriend away. I just wanted to tell you that you dont want to push your friends away, because i need someone to talk to and now i dont have anyone because i really dont have friends anymore. If you dont talk to someone your stress may get worse. Its so good you reached out. Hugs.

Vee

Share this post


Link to post
Share on other sites

I just caught your update and I just wanted to hop on again and let you know I'm still praying for you. I hope you have some support around you and people to help you through this time? And, I'm glad you found the link to the Focus site helpful. I know they'd be glad to chat with you and offer you some encouragement. Well, hang in there friend and know someone out there is thinking of you. ((Hugs))

Share this post


Link to post
Share on other sites

I am so sorry for your loss.It is so hard.My mother just died of liver Disease in ICU I watched and cried day by day..It was heartbreaking and so sad..She struggled with disease many years and started to seem better and it would hit hard.I am in a lot of pain with what i seen in ICU and her life.It is a hard situation..Feel free to share I am here..

Share this post


Link to post
Share on other sites
tkrx5rn   

I will say that it is hard to watch someone you love die by inches. I took care of my husband while he was in the hospital and again at hospice. It is almost a year since he has been gone. He drank like a fish when he was young but never drank the whole time that we were married. But that is what caused the liver cancer,

the drinking when he was young. I am still angry with the hospital over their treatment of him and I know I need to let it go but am sure how to do it.

Share this post


Link to post
Share on other sites
MichaelG   

My wife was diagnosed with non-alcoholic cirrhosis a few years back.  Now it is getting worse.  We have tried to get her into a transplant program but the doctors will not accept her in to the program.  Her primary care doctor is recommending hospice now.  My wife wants to remain at home and around family only with no strangers around.  she is sleeping more and more, I know that her ammonia levels are very high (the medicine must not be working anymore - the doctor said at some point it wouldn't).  I try to get her to wake up to take her medicine but it is a struggle.  I can tell that she is fighting the grogginess (she has always been a fighter) but it is getting harder and harder for her.

 

My heart is breaking.  I have no one but her parents to help me and they are feeling what parents do when their child is this ill.

 

I am so sad, I am trying to remain strong and level headed.

I feel lost.

 

Share this post


Link to post
Share on other sites

Hi Michael,

 

I'm so sorry for you and your wife :(  I, along with my sisters, looked after my dad in his final sickness.  I know how sad it is.  I tried to be strong for everyone and I also tried to be strong for my dad so that his passing wasn't full of more anguish for him but I have a heartsick memory of not breaking down and begging him to stay.  I wasn't true to myself and my feelings with him and that is what I regret the most.

 

It is not easy, it is horrible, and I can't even imagine the pain of doing this with a significant other but what I can only say is be your truth to her.  Be the sadness and the pain but allow yourself to continue moving forward, taking care of things.  Allowing that truth of what you're feeling will, amazingly, give you more strength than you know, even if it feels that it might take us away sometimes.

 

And if it does, that's ok too.  Pain is our constant companion for a while and being real to it and being real to ourselves is being true to our relationship with that person that we're losing or have lost.

 

I do realize that I am not in your particular situation so please feel your way through my comments.  It is only based on my understanding of how we cannot avoid the pain of loss and the sooner we be true to it, the sooner we find the love that we're missing inside of it.

 

But it will not be easy.  I am so deeply sorry for you both.

 

<3

Share this post


Link to post
Share on other sites

Hugs!    I stayed at my Brother's Deathbed in 2007 when he was dying because of addictions.    What I really hated is that fact that I am a long term 12 stepper (recovered alcoholic) and there was nothing I could do to give him the same recovery that I have been gifted with.

 

Last year,  my husband was declared terminal and we opted to do in home hospice care.   I knew it was going to be hard but accepted it and got through it - one day at a time.    I miss him so much.

Share this post


Link to post
Share on other sites
MichaelG   

Thank you all for your support,  My wife lost the fight early this morning.  She was surrounded by myself and her parents.  She knew that she was loved and we told her that we would be ok.  The hardest thing I have ever done was watching my wife pass but she is without pain now.  We had talked prior to this and I am glad that we did as it happened so fast.  We had no warning that it was going to happen now.  She was sick and her lab work showed her getting worse, but we thought that we had more time.

 

I am happy that she is in heaven, free of pain and sickness in that joyous place.  I am sad that she had to go.  I miss her.  I feel numb and empty inside.  I miss her so much.

Share this post


Link to post
Share on other sites

Many, many hugs, Michael.  To you and your wife's parents as well.  There are truly no words that help.  You are very brave to have been there for your wife, your love.  For now, just please give yourself the same, soft care, borne out of that same love.

 

<3

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


×