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Devastatedmom Asked August 2018

Son's father diagnosed with liver failure. Any suggestions or advice to help us deal with this?

Hi,


I am not sure if I am putting this in the right place. My situation is a little different. I am so unsure of what to do, what to expect and how to guide my son through his father's illness. Any guidance would be much appreciated as my son is only 10 years old.


My son's father and I have not been together since he was a baby but have shared custody. It has been contentious at times due to my ex's alcoholism so that makes this more difficult for me to figure out how to handle it.


My son's father was hospitalized last week. He told our son that his organs are failing and mentioned his liver. He told our son they had drain some fluid from where I am not sure. I know he has had biopsies and is waiting on those results but the doctor's do suspect cancer. I did contact my ex's brother because I did not feel it was right for his family to not know. He shared with me that he suspects this is end stage liver disease and that it is only a matter of time now. I had already suspected this due to the symptoms that have been shared with me but it was still really hard to process. I spent a good deal of yesterday crying.


Our son does not really realize how serious is. He doesn't know his fear of his Dad slipping into a coma or dying and him being unaware were a possibility. I know I am going to have to talk to him but I am trying to find the right words. I don't want to mess this up. So far the only thing I am sure of is I am not going to tell our son that alcohol played a part in this. I think eventually he will put it together but right now I want him to be able to grieve without that hanging over his head.


I do not know how I should handle him visiting his Dad or even how to prepare him if Dad has any distressing symptoms. My gut says visit are going to need to be a few hours and not overnights but not sure yet how Dad will handle that suggestion coming from me.


I just need whatever advice, suggestions or information that will help us deal with this. I am so sad for my son and his Dad. I have been in fear of something like this for years so I feel like I am living my worst nightmare and I feel so in over my head.


 

Devastatedmom Sep 2018
No religious leaders right now. I have a friend who is recovering alcoholic that I have talked a little about it with because I have talked to him in the past about the drinking.
I have tried to tell my son's father in the past that there are just some things he should not say to our son. He emphatically said he can say what he wants. I don't expect it to change now but have told our son if he has any questions about any of it I am right here to talk. Not really wanting to start a fight right now which me confronting Dad usually does. Even at times when I try to use my best "counselor" voice.
I don't know if he is continuing to drink but i think he is possibly smoking even though he has the breathing issues. I want to hope he is not drinking but if he is not wanting to admit how serious this is then how much should I hope really?
The denial worries me. If he gets himself into a financial bind because he refuses to admit how bad he is then I know how he can stress about money. I have seen him cry over gas prices and really he was not that bad off at the time. It also worries me that he is going to make things harder on himself and our son. I have tried my best to let our son know this is serious and while we don't know everything right now that it can be life threatening. I am afraid Dad could be gone one day and if our son believes that Dad was getting better it is going to be so much harder on him. Everytime I see an ambulance around the area since we live close my heart jumps into my throat. The other day I watched one go all the way down the street to make sure it did not turn onto his street.
I don't know if it wasn't for our son I might think let him have his denial. If it brings him some semblance of peace maybe at this stage then will it really hurt? I know though somehow it would be best for our son to come to some sort of acceptance while his father is still around. While I am really not sure how long his Dad has I do think the time left is limited. My understanding is he would need a transplant and everything I know about transplants say he is an unlikely candidate. Not to mention those lists are long.
I don't know kind of struggling with his denial because I doubt what my gut is saying. Part of me, a very small part, thinks what if he knows something that I don't that gives him hope? Then I saw his anger at his brother for thinking he is dying and I think he knows somewhere in there and just can't deal with it. So it is easier to be mad at his brother for thinking what I think me, our son and possibly other families suspect, than to admit this could be it.

Devastatedmom Sep 2018
We have visited my son's father a few times in the past week. Dad is not fighting me on short visits which tells me has to be feeling pretty bad.
It is pretty obvious he has ascites. His belly his distended. The other day he was wearing shorts and I looked at his legs. My first thought was it was weird he did not appear to lose weight there. I looked again and realized he is swollen there to, so he does have edema. When I asked him about what a therapist is coming for he said something about getting his strength back and his abdomen back. I am thinking it is most likely for exercises to he help his water retention. I could be wrong but if his liver is failing and this weak is it reasonable for him to expect those things?
He appears to be struggling with breathing but am not sure this is due to the ascites or his lungs. I do know the doctor wanted to biopsy his lungs as well. He also at one point this week was dehydrated. He told me on Sunday that three things happened at once and he was unable to make it to the bathroom. I am not sure exactly what he could not make it to the bathroom for and am little afraid to ask. I know he has had some vomiting which he told our son about. Not sure how to ask him about other symptoms he might have that I can't see. I am wondering if there are any concerns about his clotting and bleeding.
I asked him about financials. His first comment was about suing his employer. I threw in if he needs disability he really needs a lawyer for that. He thinks there is a chance he will go back to work and again I am thinking is this reasonable?
When we visited Wednesday he spent most of the time in bed except when he was looking for paperwork for the dog and his rabies tags. He then said he needed to go lay down.
I asked him about how he was eating and it sounded like he knew he was not eating enough but at the same time claimed his appetite was returning.
He has been frustrated with all the calls he has getting saying he can't rest. Annoyed the doctor's order so much blood work. He also said something I think about doctor's ganging up in him. Hes also mad at one brother because the brother thinks he could die. I am thinking he is some serious denial about the situation. He has told our son he is going to be okay and he is going to get better. I know some people go through denial in these situations but he has used denial so long to keep drinking I am worried how far he could take it now. He is so pale and so thin. I saw a man in a video the other day who was waiting on a liver transplant. He looked so much healthier than my son's father but died within four months of the video.
Still don't know about the Cancer but my big concern right now is the liver failure. How badly failing is it? Given the ascites and edema it seems pretty bad from what I have read.
He had an appointment on Thursday. Really hoping he will at least give me tidbits on what the doctor said when we go visit today.
I think to myself sometimes, "Don't he so pessimistic!" But then this isn't a cold or a flu. It is an organ failing. It is failing and he waited until it was this bad before seeking medical care. I don't know how long it has been at this stage but I think of the times in the past where he told me he thought he might be dying. Now I am wondering if he had symptoms then that suggested something was wrong.
Full confession: This is hard. Yes I am angry at him. Angry for his continued drinking, for waiting so long to see a doctor and yes I get angry at his denial right now. I don't show it to him or our son. I wonder if he had gone into treatment when I asked him to nearly two years ago if we would be here now. Maybe the damage would not be that bad. I will continue to suck it up though and do what I can because of our son and no one should feel alone through something like this.
Ahmijoy Sep 2018
I am so sorry you and your son are having to deal with all this. Do you have a religious leader you could speak with? I know you want to believe the best but you think the worst. Hubby is in denial and that doesn’t help. He does need to tone down the graphic details of sharing his symptoms with your son.

Please continue to come here and let let us know how it’s going. We care. (((Hugs))).

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Devastatedmom Aug 2018
No hospice yet. I am thinking he is going to need it. Just not sure if now or when. I am not sure he is being totally honest about how serious this is. He just gives little tidbits that tell me this is very serious. I am not sure he will reach out for help if he needs it either. I am thinking I might let his brother know that I think he might need help. If just sitting talking left him a little breathless I am not sure how much he can do for himself right now. I mean is he going to be up to making himself food? Grocery shopping? Plus he can't work so that I am sure is going to be an issue. I am not sure how much he has saved or if he he even has money saved. He is talking about suing his employer because he had gotten injured a couple of months ago on the job but I am thinking since the injury was not found until he was hospitalized that it is a shot in the dark. Really doesn't seem important given everything else but I know how he likes to think he is going to sue people out of house and home for doing him wrong. He never has actually sued anyone that I know but it seems to be something he talks about quite a bit.
I am going to look for something for us to get help. I have known for awhile that if he continued we would be down this road. I was just hoping it was further away. I did not expect to feel this grief either. We split up when our son was a baby because of his drinking and raging and I have known he was damaging his health. Even last year I was looking for signs of jaundice because I was afraid he was going to get sick.

gladimhere Aug 2018
Is there a child's support group that he could attend? You should consider family therapy, you and son, the therapist would help you both.

Is ex on hospice? Hospice offers counseling services and groups at no fee. Part of the hospice benefit.

Devastatedmom Aug 2018
I called him yesterday was not sure if he would call back but he did. We also went to visit. He does not look good. He is so skinny. Sitting talking to him and his breathing sounds like has exerted himself but he is just sitting. He did say he had fluid in his abdomen that had to be drained in order for them to do a biopsy. He said he might have to be hospitalized for it again if it gets bad again. He does have cirrhosis but going explanation is Hepatitis C to his family. I am not sure if it something that was diagnosed or something he using to avoid admitting alcohol was a factor. Then I think it could be both and feel horrified thinking what kind of damage they could do together.
He says he has no definitive diagnosis on the cancer. He has been referred to an Oncologist at the hospital but the appointment is in a week or two. He can't work. He said that climbing the stairs to get to his second floor apartment is an effort for him. Really not sure what happens if he gets worse. I really wish one of his siblings lived closer because I think he is going to need someone. Our son is afraid about his Dad being alone but his Dad does not look well enough to care for him. He did not even fight me on short visits which tells me he knows he is not well enough.
A friend of mine told me he most likely has been given a total amount to drink and has been told to suck on candy. He did this while we were there. He wasn't sure though if the candy he had was okay.
I really wish he would let one of his family members get as much information as is needed about his care and diet so if he is not sure at least there is one person who knows.
I am going to try and coax as much out of him as I can but trying to go slow with it. I do worry about him being alone. I wish he had a friend or something but the truth is that other than our son and superficial relationships he has been closing himself off from relationships with people for awhile. My son has even told me he is worried Dad does not have friends.
He does have a nurse that is supposed to come every few days to check his vitals. I really wish he had someone coming more often. He told me a few months ago while our son was visiting he had really bad chest pain and thought he was having a heart attack so he went to lay down. No he did not go to the doctor at that time. He was in the hospital for 8 days and his big complaint was no clean underwear. I told him he needs to ask. I told him if I had know about the hospital early and the dog needed to be taken care of I would have been on it right a way.
I am not really sure about how often to take our son to visit. It would be nice if they could have short visits every day but I am worried about the school week. Our son started this year excited and motivated. I actually do not have a car at the moment so we do a lot of walking and I want him to get enough rest. Also worried about if everyday will be too stressful. I don't know. When my mom passed we were all adults and it was hard but I do believe what time we spent together after we knew there was nothing more the doctor's can do is special. We were all there by some miracle when she passed. If this is it for my son's father I want him to have these bittersweet memories as much as is reasonable.
Honestly I heard my son's father's stepmother talking to him about regenerating the liver. It sounds to me like he is probably past that point and it does look to me like it is just a matter of time. If his liver and other organs are failing this does not seem to be a good sign to me.
Our son does not understand the significance of the liver failing. I think his Dad has kind of built Cancer up in his mind as the big Boogeyman. So the Cancer scares him more than the liver failing. We did talk a little about how Cancer outcomes vary according to type and a person's overall health together.

Devastatedmom Aug 2018
Thanks everyone. Communication has always been difficult with his Dad. Nearly two years when I asked him to get into drug and alcohol treatment for our son he said he was going to kill me. I had to go to email because his calls were distressing. Yes he scares me at times. Sometimes I am able to get through to him through email but I am not sure this is going to be one of those times. If the doctor at all point out alcohol was damaging irrational or not he might be angry at me because I directly addressed his health when confronting him about it. I think I am going to send him an email today but i know I have to manage my expectations. I truly believe he has a lot of unresolved trauma and it causes a lot of anger. Our son does know about Dad's illness(alcoholism). I had to sit him down a couple of years ago and talk with him because it became apparent his Dad was drinking quite a bit. I was terrified his Dad might drink and drive with him. Our son has come to sort of an acceptance of it. He knows Dad has an illness that lots of people struggle with. That is not as easy as just quitting. I tried to educate our son about it so he knows the things Dad does is because of his illness not because of him or even Mom really.
Yesterday when my son got out of school we were talking about going to visit Dad and he tells me his angry. He is angry because Dad has been having obvious symptoms for awhile and did not seek medical treatment until now. I had asked him to stay off Google and ask me if he had questions about Dad so he went and looked stuff up in a book. He wants me to be truthful with him and not try to protect him. He has thought that Dad is dying. I told him we don't know yet but it is possible. I think I need to sit him down and let him know this kind of Damage does most of the time take years and years to accumulate. He does need to know eventually about that the alcohol can play a part in this but I am struggling with when. I go back and forth on it.
I have talked to his school principal and counselor. Luckily my son goes to a really good school so i know they will be there for him if he needs it.
Yesterday he was released from the hospital and all he told his stepmom was something about oncology. I am thinking he might have gotten bad news because he was not very talkative. He generally is a talkative person so it worrie me that he wasn't. I actually contacted a neighbor of his to see if his truck was at the apartments because I am worried about his state of mind. In the past when he was I'll he would send me emails about getting his social security for our son. At one point he told me he thought he had Crohn's disease. I put that down to the alcohol at that time because he at times seems preocupied by death when he drinks.
I am going to play this by ear and do the best I can. I frequently tell our son I am here to talk even before this. He loves his Dad but Dad doesn't realize when he scares him or hurts him emotionally.
I really appreciate all the advice. This has been all mulling in my brain for days and yes I am grieving too. Things could never go back but I never wanted him gone from this Earth. I have always hoped he would get help so he could he around for our son much longer. Yes I am angry at him but I will deal with that because I know alcoholism is not simple. I am worried he went straight home and began drinking and smoking. Those are his coping mechanisms and he has no social support here.
I would not worry about overnight visits if there was another adult in the house. Our son is already stressed Dad could take a turn for the worse while he was there and that was before Dad saw a doctor. He actually told me he was afraid Dad would die in his room and he wouldn't know because Dad closes his door.
I don't going to try and email Dad today. He might not tell me anything or he might not he truthful but I am going to at least try.
FrazzledMama Aug 2018
Could you maybe try calling him? I know you said you went to email because he can sometimes be scary and irrational, but something like this I think would best be discussed either over the phone or in person. If he starts scaring or making you uncomfortable, you can always hang up. Plus, this way, you can listen to how he sounds and get a good sense as to whether or not he is sober and thinking rationally.

I would ask how he's doing and tell him gently that you and your son have been worried about his health and that son loves and is worried about him dying. You might even ask him what the doctors said. He may or may not give you any information, but if he feels that it is coming from a place of concern from you and his son, he may be more receptive, especially if it is something serious.

I wouldn't let your son go spend the night with him if there is the chance he might be getting drunk, but perhaps you, dad and son can meet for lunch somewhere, or you and son bring his dad lunch so he and son can visit with you there, if he is sober at the time.

I'm very sorry you and your family are going through this. I agree that Al-Anon would be a big help in navigating this situation, as many in the meetings have faced similar situations with their loved ones who struggle with alcoholism. A good therapist for you and your son to work through your feelings of anger, sadness, and grief would help you too. And we on this forum are here for you as well. Please come back and let us know how you're doing.
Lymie61 Aug 2018
I think you need to play it by ear to a great extent. It would be really nice if you were able to talk things through, exchange information and all with your son's dad but it doesn't sound like that's the case. Getting your information via your son who is hearing it from his father is less than ideal but kind of what your left with by the sounds unless you think he might be in a place now where you could reach out and he would accept a mutual parent friendship. But know that will require you putting aside whatever keeps you from communicating regularly now and pushing down all kids of feelings and of course if it's going to work he will have to be willing to do the same (I suspect there may be a lot of guilt there and people with guilt often act the exact opposite way you would expect as a result). But come to some sort of terms or not, speaking or not it does sound like the clean up long term along with the support for your son will fall to you. I'm not sure the day to day details about stuff being drained is necessary but then I guess there isn't much you can do the way things are about what is and isn't shared from his father. I have always been of the mind that it's important to be honest with kids about major things that are happening but cater the details to their age, maturity and maturity. This is where playing it by ear comes into play, you know your son and what he can handle when but if he is getting more info from his father it might be good to make sure you are available to help him process that info and research it if you don't know so that you can answer any questions about it. Kids often tend to imagine things are even worse than they are (might be hard in this case) and having the facts is often less scary and easier for them than not. Use your judgment about the drinking/liver thing and when and how to clue him in, it isn't something you want to hide forever but also probably isn't the reality you want or need to slap a 10 year old watching his dad suffer with. On the other hand if the opportunity presents there may not be anything wrong with mentioning that liver failure or this symptom/that symptom is similar to or also what happens to alcoholics that die from alcoholism.It will be important for him to know both the gory details and that it is in his close family. But it might be even better for him to come to that realization gradually with age appropriate time and for himself without anyone saying to him your dad is dying of alcoholism. Hope that made some sense. The suggestion you make a social worker or guidance counselor at school aware of what is going on is a good one too, as is consulting Al-anon about how to handle this with a 10 year old.

Daughterof1930 Aug 2018
I’m sorry you’re in this position. I’ve taught many children over the years and well know that they have far greater ability to deal with weighty matters than we often give them credit for. Your son deserves to know what’s going on with his dad on a level he’s able to understand. He doesn’t need every yucky medical detail, he does need his questions answered honestly, and communication to be ongoing. I also believe he really does need to know that alcohol abuse played a big part in this. He needs to know that not to demean or slam his dad, but as alcohol issues have a tendency to run in families and there could be a propensity for your son, he should be aware of this for his own future choices. I think you’re correct to keeping visits with dad brief, and then being available to talk and air out feeling afterwards. Your son will do a lot of growing up through this, a sad reality but with support and care he will surprise you in his abilities to handle more than you think

JoAnn29 Aug 2018
This is very touchy. It really depends on the maturity of the child to how much info he can handle. I do think what his Dad told him is a little much. I too would wait until all the info is in before you say anything. And when you do, make it simple. See if his school has a counselor who can advice you.

Ahmijoy Aug 2018
Your son’s father gives him credit for much maturity. I have a 10 year old grandson and I believe he would want to know if someone in our family faced a devastating and possibly terminal illness.

Speak with your ex and the two of you together speak to your son. But I would wait until there is more of a diagnosis and prognosis. I’m not so sure Dad should be delving into the details of fluid-draining and such with him,but that’s Dad’s decision. Play the overnight visits by ear. As time goes on, these could become very important to your son. But be available in case your husband becomes weary and needs you to pick your son up.

If you have a pastor, you may want to speak with him/Er for guidance. Al-anon may be able to help as well.

Prayers for you and your son.

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