Aa
Helping my father battle Hep C
While I'm not exactly sure what my question is, maybe I will find it as I type. Maybe I'm more looking for advice or an outsiders opinion from someone who has dealt with the same or similar issues.
My father will be 52 this March and was diagnosed 12 years ago with Hepatitis C. He had had the disease for some (unknown) time before that, but wasn't diagnosed until then. He went through all of the drugs and trials at the time of his diagnosis, and now 12 years later he is struggling to cope with everything. He likely contracted it from sharing needles as a teenager with his best friend, who also has Hep C now. He did drink moderately in his younger days, but hasn't had a drop in many years - it was never his vice. And the drug use dates back nearly 30 years, so that isn't an issue either. On top of the Hep C he has cirrhosis, bouts of pancreatitis, and poorly managed type 2 diabetes which causes a great deal of neuropathic pain. He frequently has to have esophageal varices banded as well.
My father used to be a very active guy. I remember him being the life of the party, always a jokester. He has always been a little grumpy, rough around the edges, but in the past few years he's taken it to a whole new level. I lost my mom in 2007 very prematurely. She was a type 1 diabetic diagnosed as a teen and struggled all of her life to control it. She smoked like a freight train long after being diagnosed with emphysema. She also had CHF, arthritis and eventually renal failure. She developed a decubitis ulcer on her heel that eventually ate out the entire heel of her foot and confined her to a wheelchair. She stopped breathing one night at home and spent 4 nights in the ICU unconscious before the declared her brain-dead. Although she had been ill for some time, her death was still very unexpected and painful. I feel like her death has had a huge impact on my father. They had been divorced for nearly 20 years, but he still cared a great deal for her. I think it made him aware of how truly fleeting life can be.
So now, here we are. My father has gone from a jolly 220lbs to a mere fraction of of that. He barely eats, has no appetite, spends most of his days in bed. If he does get up, it's only to sit in the recliner before retreating back to bed again. He rarely showers anymore and spends all of his time in misery. His illness now consumes his life, and the pain and how bad he feels is all he talks about. About 2 years ago, there was talk of a liver transplant but the minute he learned that he would be healthy enough afterwards to go back to work, he no longer considered it an option. I feel like he has just given up and I really don't understand why. He has a very loyal and loving wife, a daughter who thinks the world of him, 2 adult stepchildren who have 9 children between them. He has an extremely loving and supportive family who want him to live a long life, but it's like he doesn't even see it.
Since rejecting the idea of a transplant, he has truly just let go. He doesn't manage his diabetes at all. He never checks his blood sugar (supposed to twice a day) and doesn't take his prescribed insulin or most other medications. When he does check his sugar it often runs so high that the meter can't even read it. The poorly managed diabetes has a lot to do with the neuropathic pain, and his legs and hands ache constantly. He also doesn't take the lactulose for the ammonia in his brain, which could really hurt him one day. The only medicine he takes on a regular basis is pain medication, which he isn't supposed to take. If the doctor won't prescribe it or he runs out of pain pills, he finds them somehow. He's been known to take handfuls at a time, WAY more than any one person should take, especially someone with a barely functioning liver. He also smokes cigarettes and pot on a very regular basis.
In the last couple of years he has become the most hateful grumpus of a person I've ever met in my life. I used to have so much love and respect for my dad, but some days it's exhausting. I live with the regret of not having done enough (at least it feels that way) for my mother, and I don't want to have that same feeling when my dad dies. I try to spend as much time with him as I can and help him with whatever he needs. But sometimes it's extremely difficult to even be in the same room as him. He constantly has me in tears, whether it be from his rudeness or just his complete disregard of others' feelings. A once loving grandfather now screams at his grandchildren for something as ridiculous as not rinsing off a dinner dish.
My stepmother only stays with him out of her sense of obligation and she isn't at all in love with him anymore. He treats her like dirt and talks to her horribly in front of the grandchildren. She has stopped catering to his needs and has demanded that he take some responsibility for himself when it comes to bathing, preparing meals and taking his medication. But if she doesn't do it, then neither does he. It has become a daily struggle for all of us. I feel like I am at my wits end. I know he is miserable and has stated on more than one occasion that he just wants to die. I don't live in his body, so I don't know what all he goes through. But even love and empathy is met with anger and ugliness.
I don't know how much I can subject myself to and I feel like it's tearing me down in a lot of ways. At what point do I say enough is enough? How much emotional abuse can one family endure? If he's not willing to help and care for himself then why should we have to carry that load, out of obligation?
I love my dad a great deal and I hate to see this man that he's become. He is alienating everyone around him. I guess what I'm asking for is some advice. What do I say, what do I do? If anyone is still reading this book of a question, I could really use whatever help you can give. Maybe someone has a similar personal experience. Regardless, any input would truly be appreciated.
Thanks so much for your time.
-Amy-
My father will be 52 this March and was diagnosed 12 years ago with Hepatitis C. He had had the disease for some (unknown) time before that, but wasn't diagnosed until then. He went through all of the drugs and trials at the time of his diagnosis, and now 12 years later he is struggling to cope with everything. He likely contracted it from sharing needles as a teenager with his best friend, who also has Hep C now. He did drink moderately in his younger days, but hasn't had a drop in many years - it was never his vice. And the drug use dates back nearly 30 years, so that isn't an issue either. On top of the Hep C he has cirrhosis, bouts of pancreatitis, and poorly managed type 2 diabetes which causes a great deal of neuropathic pain. He frequently has to have esophageal varices banded as well.
My father used to be a very active guy. I remember him being the life of the party, always a jokester. He has always been a little grumpy, rough around the edges, but in the past few years he's taken it to a whole new level. I lost my mom in 2007 very prematurely. She was a type 1 diabetic diagnosed as a teen and struggled all of her life to control it. She smoked like a freight train long after being diagnosed with emphysema. She also had CHF, arthritis and eventually renal failure. She developed a decubitis ulcer on her heel that eventually ate out the entire heel of her foot and confined her to a wheelchair. She stopped breathing one night at home and spent 4 nights in the ICU unconscious before the declared her brain-dead. Although she had been ill for some time, her death was still very unexpected and painful. I feel like her death has had a huge impact on my father. They had been divorced for nearly 20 years, but he still cared a great deal for her. I think it made him aware of how truly fleeting life can be.
So now, here we are. My father has gone from a jolly 220lbs to a mere fraction of of that. He barely eats, has no appetite, spends most of his days in bed. If he does get up, it's only to sit in the recliner before retreating back to bed again. He rarely showers anymore and spends all of his time in misery. His illness now consumes his life, and the pain and how bad he feels is all he talks about. About 2 years ago, there was talk of a liver transplant but the minute he learned that he would be healthy enough afterwards to go back to work, he no longer considered it an option. I feel like he has just given up and I really don't understand why. He has a very loyal and loving wife, a daughter who thinks the world of him, 2 adult stepchildren who have 9 children between them. He has an extremely loving and supportive family who want him to live a long life, but it's like he doesn't even see it.
Since rejecting the idea of a transplant, he has truly just let go. He doesn't manage his diabetes at all. He never checks his blood sugar (supposed to twice a day) and doesn't take his prescribed insulin or most other medications. When he does check his sugar it often runs so high that the meter can't even read it. The poorly managed diabetes has a lot to do with the neuropathic pain, and his legs and hands ache constantly. He also doesn't take the lactulose for the ammonia in his brain, which could really hurt him one day. The only medicine he takes on a regular basis is pain medication, which he isn't supposed to take. If the doctor won't prescribe it or he runs out of pain pills, he finds them somehow. He's been known to take handfuls at a time, WAY more than any one person should take, especially someone with a barely functioning liver. He also smokes cigarettes and pot on a very regular basis.
In the last couple of years he has become the most hateful grumpus of a person I've ever met in my life. I used to have so much love and respect for my dad, but some days it's exhausting. I live with the regret of not having done enough (at least it feels that way) for my mother, and I don't want to have that same feeling when my dad dies. I try to spend as much time with him as I can and help him with whatever he needs. But sometimes it's extremely difficult to even be in the same room as him. He constantly has me in tears, whether it be from his rudeness or just his complete disregard of others' feelings. A once loving grandfather now screams at his grandchildren for something as ridiculous as not rinsing off a dinner dish.
My stepmother only stays with him out of her sense of obligation and she isn't at all in love with him anymore. He treats her like dirt and talks to her horribly in front of the grandchildren. She has stopped catering to his needs and has demanded that he take some responsibility for himself when it comes to bathing, preparing meals and taking his medication. But if she doesn't do it, then neither does he. It has become a daily struggle for all of us. I feel like I am at my wits end. I know he is miserable and has stated on more than one occasion that he just wants to die. I don't live in his body, so I don't know what all he goes through. But even love and empathy is met with anger and ugliness.
I don't know how much I can subject myself to and I feel like it's tearing me down in a lot of ways. At what point do I say enough is enough? How much emotional abuse can one family endure? If he's not willing to help and care for himself then why should we have to carry that load, out of obligation?
I love my dad a great deal and I hate to see this man that he's become. He is alienating everyone around him. I guess what I'm asking for is some advice. What do I say, what do I do? If anyone is still reading this book of a question, I could really use whatever help you can give. Maybe someone has a similar personal experience. Regardless, any input would truly be appreciated.
Thanks so much for your time.
-Amy-
Unfortunately I dont have too much to add except to say that I truly wish a miracle would happen and your dad would 'get it'. It's likely that he wont though so I hope that you are taking good care of yourself and that you try to find a therapist who can hopefully help you walk through these incredibly difficult times.
You sound like a very loving caring person and I would hate to see, as Bill said, you be poisoned over all of this. Certainly you have had such a hard road - life just isn't fair at all sometimes, not one little bit at all.
I am very sorry that you and your family have to go through all of this. Most of us can't understand because we wanted to do treatment and succeed and get rid of this virus more than anything. But, that doesn't mean we dont care.
If you need to talk, we are here.
Best of luck, Debby
You sound like a very loving caring person and I would hate to see, as Bill said, you be poisoned over all of this. Certainly you have had such a hard road - life just isn't fair at all sometimes, not one little bit at all.
I am very sorry that you and your family have to go through all of this. Most of us can't understand because we wanted to do treatment and succeed and get rid of this virus more than anything. But, that doesn't mean we dont care.
If you need to talk, we are here.
Best of luck, Debby
Pam offered some really fine thoughts above; I have little to add to hers. Don’t let this poison you, as hard as that might be to understand right now.
Good luck and take care of yourself,
--Bill
Good luck and take care of yourself,
--Bill
Hi Amy,
I so sorry that you're having to deal with this situation and so soon on the heels of your mother's death. I don't have any answers for you, but your post could well have been written by either of my kids about their Dad (my ex), so similar the conditions.
My ex does not have HCV, but alcoholic liver disease now complicated by COPD and some kidney involvement. But here I think the underlying problem is the profound depression that incapacitates him similar in many cases like what you wrote of your Dad. The kids have tried to maintain a relationship, but it's on very shaky ground. It breaks my heart that he keeps pushing them away, then coming back to say that they don't care a whit for him. My daughter drives by his house every day on the way to work and told me she worries that when his shades aren't open that he's laying in there dead and scared to open the door. When she does, he is still in bed fully clothed staring at the ceiling. He, too has given up.
Unfortunately, I don't think there is anything we can do as family members until they make that decision to seek help and live. My kids have learned that if he's slurring his words when they call, they stay away. They love their Dad, but the cruelty takes its toll over time. We have begun to talk about the worst case scenario which becomes more and more likely with each day of continued drinking. I don't know what's right or wrong in cases like these - I believe we continue to love them, but at the same time, we have to start letting go. My son withdraws and clams up while my daughter gives it to him both barrels verbally, then takes a breather for a couple weeks. I used to write out my fears, my pain, my anger - it helped to vent at times in a way that wasn't confrontational. If you have a trusted friend or sibling, reach out to them.
Do know that you are not alone, though you certainly may feel that way. I know I did when I was in the thick of it. Take time for you, guiltfree, to keep yourself as healthy as possible through all this. Pam
I so sorry that you're having to deal with this situation and so soon on the heels of your mother's death. I don't have any answers for you, but your post could well have been written by either of my kids about their Dad (my ex), so similar the conditions.
My ex does not have HCV, but alcoholic liver disease now complicated by COPD and some kidney involvement. But here I think the underlying problem is the profound depression that incapacitates him similar in many cases like what you wrote of your Dad. The kids have tried to maintain a relationship, but it's on very shaky ground. It breaks my heart that he keeps pushing them away, then coming back to say that they don't care a whit for him. My daughter drives by his house every day on the way to work and told me she worries that when his shades aren't open that he's laying in there dead and scared to open the door. When she does, he is still in bed fully clothed staring at the ceiling. He, too has given up.
Unfortunately, I don't think there is anything we can do as family members until they make that decision to seek help and live. My kids have learned that if he's slurring his words when they call, they stay away. They love their Dad, but the cruelty takes its toll over time. We have begun to talk about the worst case scenario which becomes more and more likely with each day of continued drinking. I don't know what's right or wrong in cases like these - I believe we continue to love them, but at the same time, we have to start letting go. My son withdraws and clams up while my daughter gives it to him both barrels verbally, then takes a breather for a couple weeks. I used to write out my fears, my pain, my anger - it helped to vent at times in a way that wasn't confrontational. If you have a trusted friend or sibling, reach out to them.
Do know that you are not alone, though you certainly may feel that way. I know I did when I was in the thick of it. Take time for you, guiltfree, to keep yourself as healthy as possible through all this. Pam
Have an Answer?
You are reading content posted in the Hepatitis Social Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
