Hello, I’m living a nightmare right now. My dad is in the final stage of liver failure. He’s drank a good portion of his life, but he’s always been a good dad. He’s declined these last few years, but what I’ve seen these last few weeks I could never prepare myself for. I called him a few weeks ago and he was screaming for help so I called 911. He was naked on his knees in the bedroom. His legs had given out..he is skin and bones, but his abdomen is bigger than a pregnant woman giving birth to twins. My dad was taken to emergency, he was in the hospital for 2.5 weeks unable to see family due to covid restrictions. He demanded he be released from the hospital instead of going to rehabilitation. He didn’t want to be poked and prodded anymore. He lives alone in a very dirty home that he hasn’t taken care of. He made it home 5 days ago where he had hospice come in and go over everything-that they would only be there a couple times a week for a few hours each day. I spent hours with him and ended up going home 20 minutes away. He kept calling needing help around the clock. It was too much for me to handle.
I sent him back to the hospital after only being home 3 nights, against his will. I feel so terrible. I am traumatized from what I’ve seen and done for him over the course of the few days he was home. He had immediately started back to drinking when he got home, he would constantly poop and somehow get it all over pillows, remote, floor, wheelchair. I feel so guilty and he told the social worker he felt guilty as well. He was constantly needing to pee so I would have to hold his penis in the cup to pee. He wasn’t eating, but I could get him to drink ensure. Screaming in pain even though I was having to give him dozens of pills. He is unable to walk now and he said he suspects the pain will get better as he progresses. This has been absolutely devastating. His mind is deteriorating rapidly so sometimes he’s “with it” other times he can’t say what he needs. I feel so terrible that he’s back in the hospital and I can’t go see him, he just wants to go home. He has a little bit of money in his checking account to pay for a caregiver so I’m wondering if I should hire someone, but I don’t have access to his bank account. I love him dearly and I want to be able to comfort him, but I also have my own responsibilities in life including my 3 year old son. I hate seeing him in pain. Is it too late for me to give him part of my liver? Is it too late if we just keep him in the hospital maybe without alcohol his liver could recover or is he too far gone? I’m not ready to say goodbye, but I also can’t let him live alone and be laying in his own pee and feces for hours at a time. What do I do? I keep thinking he’s near death-he’s freezing even when the house was around 85 degrees, he can’t get comfortable and he’s awake a lot due to the discomfort, he’s wasted away and I just don’t recognize him anymore. He’s a good spirit and doesn’t deserve this. I’m 30 years old and lost my mom when I was 18. My dad has been my person for a long time. I feel great pain.
I'm so sorry that your dad's choice of lifestyle is now resulting in so much pain for the both of you.
Death by liver failure is horrible. There is literally no chance he can have a partial transplant, as an adult, they just haven't gotten that 'skill' down. You are beyond kind to even think about it. Also, the fact he's an alcoholic, he couldn't even be considered for a transplant until he is 6+ months totally sober--and that isn't likely to happen.
Accept that your dad has made his own choices and sadly, those choices come with consequences you can't help. YOU could not have stopped his drinking, no matter how much we think we can really help people, unless they have the desire to change, they never will.
Hospice will keep him pain free. At this stage, they will give him as much morphine and Ativan and sleeping aids as freely as they can. Esp if he is in a facility. Let someone else do his EOL CG, and you just be there for him in a loving daughter way--not as his primary CG.
As long as he's in Hospice, he won't be able to drink, and sadly, at this point, it probably won't make a day's difference in his lifespan.
You sound beyond loving and sweet. He has been lucky to have you. You are pre-grieving his death and that actually is harder, in ways, than the grief over 'waiting'.
Good luck to you--I hope you can find peace in this.
I'm so very sorry for the excruciating pain both you and your dad are suffering right now - your dad for dealing with his life through alcohol and for you who is suffering the consequences of his choices. I can sense your panic and scrambling around trying to figure out what to do and how to help all to no avail. I feel especially bad that you lost your mom at such a young age wondering if that's what's behind your dad's alcoholism and that he's all you've had ever since.
You need to find someone to help you with what this is doing to you. If hospice is still in the picture, have you talked with their social worker and/or chaplain who can provide you with the resources you need to get a handle on what's happening?
I know you aren't ready to say goodbye to him - most people aren't ready no matter how much we try and prepare. And of course you can't let him live alone in such an environment such as he's living in.
I looked at your profile and don't see what state you're in but, do you have a local "Area of Aging Agency" that you can call for resources? What about the hospital - they should have their own social worker and chaplain. Please reach out to one of them.
Once again, my heart is breaking for you as you watch this all unfold. I will be praying for you - that God will help you and guide you through all of this.
Many (((hugs))) my dear!
My prayers are with you.
What Dad wants and what Dad needs are two very different things right now. Dad needs 24/7 medical care, he needs proper pain management and he needs a clean environment.
No, he is not a candidate for a full or partial liver transplant. He is far too ill, and there are not enough livers, to go around, they do not do transplant surgery on those who continue to drink.
When a friend's brother in law got to the point of his abdomen being grossly distended he was given 2-3 months and died 2 weeks later. However his liver failure was due to cancer, not cirrhosis.
You need to prepare yourself for Dad's death. If you can try to find a Will, try to put his paperwork in order, find his bills, have they been paid? Contact a funeral home so you know what to expect.
I would hope the doctors have at least done that, as I'd think that might help with the pain to some extent. His liver is like a rock and isn't filtering anything anymore, so the fluid it would filter is ending up in his abdominal cavity.
I'm so very sorry for you -- this must be so hard to watch.
Alcohol abuse can wreak havoc on the body, especially as it ages.
Aries, this is not your fault and - offers of your own donor tissue notwithstanding- you can’t fix it.
I can hear the anguish in your voice.
It sounds like you suffered much at a young age. And a special relationship with a dad who is your one remaining parent makes this situation that much harder.
Watching the kind of deterioration you mention is one thing. Cleaning up the excrement, helping him go to the bathroom, seeing the environment they live in... that is all so much more. It feels like those experiences are burning into your retinas and that you will never be free of them. Take heart, they will fade eventually.
It sounds like he had had a problem with alcohol for a long time? How old is your dad? You say sometimes he is with it and sometimes not. Alcohol-induced dementia is a thing and it can make life crazy for loved ones.
He is surely loved by you, that much is obvious. Please keep sharing here. This community has many people with so many experiences dealing with similar issues... there is a wealth of experience and caring here.
My brother died of liver disease and it became too much for me as well.
I was raising children too, plus taking care of my mom. It’s impossible to do it all.
I am so sorry that you lost your mom. I can see how much you love your dad. I loved my brother too.
We can hate the addiction, the lifestyle that they lived but still love them as our family.
This doesn’t mean that we don’t set boundaries or place them above ourselves or our own families. There must be a balance in life.
Trust me, I had to learn lessons the hard way.
So, don’t feel badly and don’t feel guilty. You have done your best.
Your dad can’t go back home. It sounds as if it’s too late for a transplant.
Please ask to speak to the social worker at the hospital. Ask about hospice services in your area.
Sign dad up for hospice. They will keep him comfortable in his final days.
They will also provide a social worker and clergy for your dad and you.
Your dad knows that you love him. You’re going to get through this.
My brother was under hospice care for his final days and he was kept comfortable, spoke to the social worker and clergy. The nurses were incredible. He died with peace and dignity.
Please don’t hesitate to reach out to this forum. We are here. We care.