Find Senior Care (City or Zip)
Join Now Log In
L
Livserb99 Asked February 2022

My dad is coming to the end of his last stage of life due to liver disease. What was it like once you decided to focus on comfort?

My dad is 57 years old and is coming to the end of his last stage of his life. He has been receiving “aggressive” treatment for the last 2 years, but especially the last 6-12 months. His hospitalizations are getting much more frequent and we are about to make the transition to comfort/hospice care. He’s weak, disappearing mentally, his body is so full of fluid he looks pregnant and huge. But without that excess buildup in his body he would be skin and bones.


He was very full of hope the last few months but upon his most recent hospitalization last week that has changed. He’s ready to be comfortable. I want him to be comfortable. It’s just myself and my two younger siblings (we are all between 18-22) so I want him to feel in control of his life and his decisions. So it’s almost a relief to know that he wants to make these calls for himself and….I know there is no cure for this disease.


For the people who have experienced this awful disease….What was it like once you decided to focus on comfort? I love my Dad more than anything in the world. I do not want him to be miserable. But, rather selfishly, I am so scared to watch him die. Is it long and agonizing? I know that there can be an increase in pain and comfort because it’s basically all of his organs just slowly stopping to work. I know Hospice can give pain meds if he opted for that but I guess I’m asking more spiritually/emotionally how to deal with death in this way.

Daughterof1930 Feb 2022
I’m so sorry your family is going through this. I helped my dad after he decided on hospice care and to stop treatments that weren’t helping anyway. He had end stage heart failure and was on hospice in his home for about 5 weeks, the end came much faster than predicted. Hospice was excellent at guiding me and keeping him in comfort. The actual dying process was about 2 days long, and yes, not fun to watch at all. But dad was comfortable and mostly sedated. It’s undeniably hard to watch someone die, but oddly maybe, it also feels like a privilege to be there and see a beloved dad out of the world and all the sickness. Lean on hospice, get extra help when you need it, and know your dad will realize your love and caring. I wish you all peace
cherokeegrrl54 Feb 2022
True words….thank you….Liz
againx100 Feb 2022
I'm so sorry your dad is failing. 57? Yikes. I don't have any ideas about exactly how it is going to go. Hospice will give him pain meds as needed to keep him comfortable - I feel there is no need to suffer at the end-of-life. I guess you need to try to come to terms with this so that you won't have to be so scared. It's sad, no doubt, but if you know he's going to die maybe you can somehow come to terms with that and find comfort in the fact that he will be dying with dignity and his suffering will soon come to an end.

ADVERTISEMENT


Debstarr53 Feb 2022
My step-dad had stage 4 liver cancer. He didn't have much pain until one Saturday we had lunch with him and by that evening he was in a tremendous amount of pain. He was already on hospice, so they told me what medications to start giving. He went downhill fast that week. We kept him comfortable. On Wednesday night, we had to transfer him to a nursing home because he could not get up out of bed to use the bathroom. and none of us could physically deal with him in bed. That following Friday, when I went to the nursing home, I could see he was not very aware of what was going on. After a couple of hours, I had to leave to go run some errands to get things set up at my mom's (she is the one with dementia), but before I left, I bent down close to his ear and sang "Shall We Gather At The River."
He passed away 2 hours later before I got back to the nursing home. I regret that I was not there with him, but I am thankful it was not a long, drawn out, several months of suffering ordeal. He was kept comfortable and he knew he was loved.
At your age it will be harder, but make sure you take advantage of the grief support hospice will provide. I have found out that getting out photos, talking about the memories, laughing about the funny moments, and just celebrating their life, helps tremendously. God bless you all.

MJ1929 Feb 2022
Has your Dad had pericentesis? That's the procedure to drain the excess fluid from his abdominal cavity. It would make him much more comfortable, and hospice allowed it for my dad when he had liver cancer. As the cancer progressed, the need for the procedure declined and he no longer swelled up.

Getting Dad on hospice was the best thing we did. There were no more trips to the doctor, the hospice nurses came to him, and they were there with us when he died. I had stayed up all night trying to sleep on the wood floor next to him, and the next afternoon I called hospice and said I couldn't do it anymore. A nurse was there within two hours, and I wasn't left alone until he died the next day. He was never in pain, and because of that, I was more comfortable with his passing even though it had all happened so fast (six weeks).

Please use hospice and take advantage of everything they have to offer. You can call anytime day or night, and they're there for you and your dad. It's invaluable.
Llamalover47 Feb 2022
MJ1929: Good call on the paracentesis.
TChamp Feb 2022
In other words, your father is coming home to die because the doctor can't do no more. He is so young but that is the reality you're facing now. No question that it would be terrifying to anyone. The hospice nurse will make sure that he passes away with minimum discomfort. Most like he will remain sedated most of the time. I guess that is you the one that will suffer the most. Losing a parent prematurely can be devastating. I would suggest that you start counseling right away to prevent any major damage. If you're the religious type, you should start talking to your priest or minister. Anyone in your shoes will feel like you do. Don't be ashamed.

InFamilyService Feb 2022
This is a very difficult time for your family. Sounds like your dad is accepting this start of his journey home.

My dad passed last year.

Spend as much time as you can with him. He soon will be sleeping a lot more and refusing food and water. As the body breaks down there is no need for nourishment. Hospice will be able to explain the dying process with you and thry will manage his pain.

Be sure to ask and understand all of your dad's wishes. He may want to see relatives or friends. Even though he is sleeping he will know you and siblings are nearby.

This is his journey. You just need to support him.

God bless you.

salass34 Feb 2022
Im sorry you are experiencing this. I just lost my Dad on January 18th. He was 68 and I'm 32. My Dad suffered from LBD, Parkinsons, Celiac and COPD. He fell and broke his hip on January 5th. He declined very quickly. He was unable to swallow without choking, his liver and pancreas started to fail. He did not want to get out the bed for physical therapy so rehab wasn't an option. I was asked "how aggressive I wanted to be" by his doctors. He did not want any artificial means of being kept alive so I felt I had no other option other than hospice. My Dad was transferred to a beautiful hospice house in the evening on the 13th and he passed away the 18th. I was able to call anytime I wanted to check on him. I also had a priest and the hospice house chaplain come in and pray with us. On the 17th around 1pm I was called by his nurse who suggested I come up there. I wanted to do my best to be there when he passed. She told me his breathing pattern has changed so it would be good for me to come. I came up there and stayed with him all night until he passed early the next morning. I had a gut feeling to stay and I'm glad I did. It was very peaceful. I fell asleep briefly and woke up and heard my Dad take a breath and then he stopped for about 20 to 30 seconds, took another breath and that was it. Emotionally it's been very hard on me to have witnessed it but I wanted to be there for him and I know he is no longer suffering. My Dad was in terrible shape before the fall and I honestly don't think he would have had another 6 months to live even without the fall. Im comforted to know he is at peace and not in any pain or distress.
I know you said your Dad is not mentally all there but just be prepared for the changes that come with dieing. His body will physically change.
Hospice is a great thing for those who are suffering. They will keep your Dad pain free and comfortable. The nurses where my Dad was were wonderful. They bathed him, shaved him, combed his hair and moved him often so he was comfortable. They would talk to him like he was any other patient. They gave me as much time as I needed when he passed. They offered me water and food. They were wonderful.

ExhaustedPiper Feb 2022
I'm so sorry you are going through this Liv. My father died of liver failure at age 59 after a brutal fight with colon cancer. I was a bit older than you. I feel for you going through this at such a young age.

Like your dad my dad made the decision to stop treatment and go into hospice comfort care. We did it at home, with hospice coming into the home. Hospice can also be done in a hospice facility.

Where ever your dad gets hospice care they will keep him comfortable. In our case hospice was truly a Godsend and made a difference for all of us, not just my dad. In other words, it's okay and appropriate for you and your sister to lean on the hospice nurses. They are used to this, and in my experience, very compassionate. They can help you talk about end of life issues and worries. Including emotional and spiritual things.

My dad's hospice lasted about 3 months. When he showed signs of distress they gave him appropriate medication to calm him and help his pain.

Emotionally it is hard, I won't lie, this will not be easy for you and your sister. Losing a parent is hard, and I hope you will seek counseling if your grief feels overwhelming. That's what I had to do, and it helped. Time helped.

I wish all of you peace and strength as you face this difficult time.

Dizzerth Feb 2022
I’ve been through hospice with 3 close loved ones now including my husband. None of them had liver disease but once the decision was made it was a relief and hospice was a tremendous help. I was the one in 2 cases who did all the administering of the drugs but was coached a lot by hospice what and when to give them. All I can say is that dying isn’t always easy. It can be a struggle, but is eased by the medications. It’s a very sacred time to spend with your loved one and should not be feared.

MicheleDL Feb 2022
- What was it like once you decided to focus on comfort?
It was a feeling of acceptance, a sad acceptance mixed with a feeling of giving permission. It's a change from fighting an unbeatable illness to helping the person to leave peacefully. With help and guidance from hospice we just followed instruction, and kept vigil. My brother played very quietly gentle music from my parents youthful days in pre-WWII Paris on his iphone and placed it close to their ear. I quietly whispered gratitude and spoke about the fun and great things they did for us. My sister told them she was there, loved them and held their hand and moistened their mouths with wet swabs.
I held vigil well after midnight. Both my parents died an hour after I left their side. I was told to leave by a nurse who said that sometimes folks won't die until the loved one leaves.
When they died I was called at home. I called the funeral home to come pick up the bodies and went back to sit by their side while I waited for the funeral home's 24/7 pickup person to come. I made those arrangements before hand. I didn't want my mom or dad put into the hospitals basement. When they came I was told to leave not to watch the sad lifting and shifting of their lifeless bodies onto the special funeral home gurney.
- Is it long and agonizing?
My parents were at home for about 10 days of hospice care, and then transferred to a hospital and about 4 years later, my other parent to a nursing home, toward their last about 30 hours. They don't feel much pain because hospice is on top of it with great palliative care to the very end.
- Spiritually/emotionally how to deal with death -
I was not raised very religiously. I'm aware of and respect the rituals of my faith though. Annually I do what is required of me to do in remembrance of the departed on the anniversary of their death. It's helpful to me because by doing this I feel that we are still connected. Ritual fills the void.
Create an annual something, only if you'd like, maybe an annual trip to a lake, beach or park where you all had fun as kids with your dad. It'll be helpful to you and shows him in spirit that you are happy that he was in your life.

Sad, happy, lonely, hurt, it's all normal. Just go through the feelings. Be patient and gentle with yourself. You will grow strong and be a great support to someone who will need you someday and you will draw on all your experiences including this one.

See All Answers

ADVERTISEMENT

Ask a Question

Subscribe to
Our Newsletter