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 husband died from liver cancer that started out as cirrhosis of the liver. The first hospitalization for the cirrhosis was two months (December 2013) later after we had married. He started coughing up blood and was diagnosed that December. He was in the hospital during Christmas. He called me from the hospital and told me to open up my gifts. I told him no and that I was going to wait until he got home. I went to pick him up from the hospital a few days after Christmas. I don't remember all of the details but he did okay for then. The first hospitalization was two weeks after we got married that October of the same year with a pulmonary embolism. Two months later he was back in again for the bleeding of the varices due to the advancement of the cirrhosis.

His stomach started swelling from the ascites. He would have to go in to have the fluid removed. He began having hospitalizations more frequently. He was due for a liver transplant, but a biopsy showed cancer in April of 2016. He lived for seven months after being diagnosed. He passed at the age of 59 years old.

He was given palliative care the last three days of his life.

There really is no way to "deal" with it--except you have to. No amount of chronic disease will "prepare" you for it. You have to accept death is the price of being born on earth and one day it will be your turn, as it will be for me and everybody else. My mom had Alzheimer's disease for 15 years and she lived in total comfort and felt secure in her own home and died in peace. VERY peacefully. Two years on hospice. I was devastated after she died. I thought after she died...what's next? I could crack up, but that is not going to bring her back. All the crying won't change things. So I had to ACCEPT it...and just go on living.

(1) have prepaid funeral or cremation services done.
(2) See an eldercare attorney for ESTATE PLANNING. TRUST ME YOU WILL NEED THAT. You do not want anything to go on probate. ESTABLISH who is power of attorney. Get a WILL DONE. Death is a very cruel business, and you need a will to define who gets what. You will find out just how dirty your immediate family is when they want a piece of the money pie. Estate planning will cut down that stress. Because dealing with the death is hard enough.
Whoever manages the money will ALSO need their name on your dad's bank account. If his name is on the account alone and he dies, it goes to probate and can take years to resolve

(3) Accept what has happened and face it.

Two years after mom's death I'm still recovering. I am working and two classes away from my Master's degree. I'm resuming living. Because you have to. My cats depend on me. They need me.

But all the while I miss mom. I took financial chances on school, but I'm okay with that because I lost mom. What loss could possibly could hurt me worse.

I never got over missing mom--but time made it less traumatic.

There is no one else's story that can help you now. I am a nurse and could tell you a thousand. You need, along with your Father, to speak honestly with the hospice people, that you all recognize that this is end of life care and that your father wishes to be medicated and comfortable, even if the administration of that comfort may hasten his death. They will then keep him well medicated. I am hoping he is in facility care. Much more difficult to arrange the best relief without their being there all the time, and that is more and more rare.
I am so sorry. You describe well what the end stage looks like. There is also exhaustion and often confusion and panic. That is why you really want the good meds to the extent you can have them. Your Dad is so young. I am so dreadfully sorry for all you are all going through.

Comfort should have always been a priority.
Getting Hospice involved is not "giving up" it is accepting that all that could be done has been done and despite all the medical advances there are some things that can not be "fixed"
Emotionally it is difficult to watch a loved one die. Particularly someone as young as your dad. You and the rest of the family go through the same stages anyone that has been given a diagnosis that will limit life. there is Anger, Denial, Depression, Bargaining, Acceptance, Guilt, Shock, Mourning, Pain there are more but everyone goes through them at some point. And you can go through each more than once.
There was one time I was sitting by my Husbands bed holding his hand and I was crying, telling him I did not want him to leave me. Then it suddenly hit me that that was selfish of me. I was crying because I was going to lose him, I was crying because I would be left alone, I was crying because I was the one in pain. My tears were all about ME! He was no longer the person he was, he was a shell of the vibrant blue eyed laughing man I had fallen in love with and spent the happiest times with. Why would I want him to remain as he was, bed bound, unable to talk to me unable to laugh, not knowing his daughter, grand kids.....
I told him I was going to be alright. I would miss him but I would be OK.

Thank your dad for all he has given you.
He will always be with you. In your heart, in the back of your mind.
You will wonder about something and you will hear him in the back of your head telling you if it is the right thing or not. One day you will laugh at something and you will swear that you heard his laugh as well. Keep him alive with stories you tell.
I have a closing line on each email I send it says...When someone is in your heart, they're never truly gone.

Please ask the Hospice Nurse, CNA, Chaplain or Social Worker to help you if you have any questions. They have seen it all and have been asked all the questions. there is a great pamphlet that you can read on line that might help it is called Crossing the Creek.

((hugs)) you are strong enough for this.

I watched my 52 year old sister die from cancer. It wasn't a Hallmark moment but, it was not a nightmare either. Your love for him will make it possible to be there for him.

I recommend talking about happy memories, contacting anyone that he would like to talk to, talk about his dying and the journey he is getting ready to take, talk about anything and everything. Let him cry if he needs to. Be silent if he needs that.

Don't be afraid to make him laugh at every opportunity. Find jokes he will enjoy and repeat them for him and visitors if he was especially tickled by them.

Remember to give him physical touch. Rub lotion or hold his hand, brush his hair, rub his legs or feet. I think this is often missing in end of life care for fear of hurting someone. Ask him if there is something he enjoys having rubbed and do it.

Mostly, treat him like he is alive until he isn't. So many visitors would try to talk to my sister like she was already gone and that was the one thing that bugged her the most. It was depressing and sad.

Let him eat and drink whatever he wants or not.

If he is a believer or interested in what this journey is, ask hospice to send their chaplain or call local churches to send someone.

Mostly, let him be in control of as much as he can manage. My sister didn't want morphine and was provided a different pain Med. She only took meds when she wanted, regardless of what hospice said, she wanted to be very awake and present in her final days. She was until right before she died.

No matter what, just love him.

I am so sorry you guys are losing your dad so young. May The Lord give you all strength, courage, wisdom and peace.

Hospice is wonderful to work with . We kept my mom at home in the end .. They not only kept her comfortable they kept us informed about what was happening to her . It was Cancer and there was a tremendous amount of pain . Watching the amount if pain she was going thru was awful . She had already voiced that she was ready to “ GO HOME “. She lead a full life on life’s terms . She lived thru ups and downs and was ready. I looked into myself , about what I would want done if I was in that position. I would not want to be kept alive if I had no quality of life.. I have signed an advanced directive stating that . I promised to come back and haunt my kids if they didn’t follow my wishes. They will miss me but hopefully respect my wishes and remember me with love focusing on the time we spent together ..

A good hospice is a blessing. Being in comfort may be what he needs. Sometimes all the treatments and tests just wear them down both physically and mentally. Let him be comfortable and enjoy the time you have left with him. You are facing the inevitable. Prepare yourself but make the very best of what you have left. Just lost my mother a year ago and I can say the last few months were special.

Know that you are not alone.

it would be nice to “run for the hills” - but don’t.

Stay close to him. Even though it is hard to watch a loved one slip away, it is life’s ultimate kindness to have someone there.

You may not think you can get through this, but you will be fine. You will be stronger for getting through the experience.

If you are having in home hospice, they will give you a comfort pack to administer (Morphine etc). Be Extra generous with the morphine comfort because the nurses advising you may not want to be accused of hastening the demise and be stingy with the amount they tell you. As a result of not wanting criminal liability, horrible needless suffering may occur. Remember this when the time comes. From personal experience here.

So sorry that this is a journey you will experience. I am an RN and have cared for people with liver failure.

He will become more sleepy and sleep more as time goes on.
He will become more confused as toxins build up in his bloodstream.
He will become more "yellow."
Fluid will continue to build up in his abdomen.
His skin may become more itchy or sensitive. Lotion helps a bit.
Eventually, he will slip into a coma.

Not sure where you or your dad are spiritually.
It can be helpful and comforting for a hospice chaplain to visit your dad and also be available for the family. Ask about this at the hospital or hospice facility.

There are two books I recommend for you to read:

https://www.amazon.com/dp/B014K603QA/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1

The link above is Peaceful Passages: A Hospice Nurse's Stories of Dying Well

Joy is a word rarely associated with death. Yet joy is ultimately the effect in this collection of stories about Janet Wehr’s experiences in witnessing the death of her patients during her fifteen years as a hospice nurse. Her first-hand account gives illuminating and comforting insight into the spiritual aspect of what occurs in the transition between life and death, highlighting the importance of the mind-body-spirit connection as it manifests in the dying process. It also gives a candid impression of hospices and hospice nurses and the services they can provide.
All of Janet’s forty-six personal stories are true, fascinating, heart-felt, and thought-provoking. Through her authentic examples, readers gain understanding, hope, and a sense of peace about what is, after all, an inevitable experience for us all. And with that sense of peace, comes joy.
This book is endorsed by the President of Hospice of America and will be used as a training manual by that organization.

The second book is here:

https://www.amazon.com/dp/B0751JTR82/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1

Living at the End of Life: A Hospice Nurse Addresses the Most Common Questions

What’s going to happen? How will we manage? There are things I still want to do. I’m afraid…
As death approaches, both patient and family must cope with grief, pain, and seemingly unanswerable questions. It’s a time of challenge, of concerns. But, as hospice nurse Karen Whitley Bell reminds us, it also offers an opportunity to explore and rediscover the fuller, richer meaning of life.

Drawing on her years of experience, Bell has created a comprehensive, insightful guide to every aspect of hospice care and the final stages of life. She discusses the physical, emotional, and spiritual journey a dying person goes through; care-giving during this difficult period; closure, and loss and the lessons it teaches us. In addition to her warm, yet knowledgeable voice, readers get firsthand accounts of experiences in hospice care, making Living at the End of Life accessible, reassuring, and indispensable.
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I feel that these two books (both available on Kindle or in paperback) will help you go through the death process with your father and gain a better understanding of what's to come, how to cope, and answer your questions while bringing you peace at the same time. I have found that hospice nurses write THE best books, especially when they recount the personal stories they've witnessed with their own patients. Those stories bring hope and peace into our very souls.

I'm sorry you are going through such a thing with your dear father. I lost mine in 2015 and he too was on hospice care, thank God. My father suffered no pain during the last days of his life, (brain tumor) and the active dying phase only lasted about 12 hours. He did not enter the active dying phase until we all LEFT his room and he was alone; the hospice nurse advised me to get everyone out b/c she felt he wouldn't 'let go' until we did. Some people say that's 'ridiculous', but I'm not one of them. 2 minutes after we all left dad's room, I heard the 'death rattle' begin when just earlier, his breathing and vital signs were perfectly normal. He passed 8 hours later.

Sending you a big hug and a prayer for peace.

- 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.

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.

Liveserb99: As each individual nearing the end of their life is of varying ages and also medical conditions which led them to this time in their life, the answer to your query may differ. My late mother, who was 94 years of age, suffered an ischemic stroke and was not able to receive food and had her eyes closed nor was verbal when I had to place her on palliative care. Prayers sent for your most difficult time.

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.

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.

It was the hardest thing I have ever done. My dad had his will in place, all his decisions made, funeral planned and he was on point until the second half of the first day of morphine. Then he was despondent and slept. Everyone was in and out to visit until those last two days as he passed in comfort. It was an amazing couple of months and the saddest in my life. The hospice team taught us what to expect and counseled with us and just loved my daddy through it with us. I hope you get a great hospice team. Rely on the head nurse and tell them what you need when they ask. They want you to do that. God bless you and your siblings. You are so young to be doing this. Prayers and positive thoughts.

Read up on the dying process so you need to know what happens in the final stages like the death rattle . Morphine helps when they are in pain . Get a social worker and join a grief support group or counseling . Is your Dad religious ? A hospital Chaplain is available . Read books Joan Halifax has some good books on death and dying . Your Dad is lucky to have you by his side . Get yourself some healing ❤️‍🩹 while dealing with this process wether it’s a long walk in the woods or beach or meditating or praying .

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.

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.

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.

I am so sorry that you are going through this at such a young age. It is definitely a traumatic time for anyone, but typically children are much older and have had their parents longer than you and your siblings. As far as how to deal with your dad's passing - I've gone through it twice and its hard to say which is better. My dad died suddenly of heart issues (after a successful surgery) - no goodbyes, no hand holding, no prayers as he passed, and no one with him. All we got was 'the family might want to come to the hospital' to tell us what we already knew. My MIL passed much the same way your dad is passing. As sad as it was, the family gathered, a priest came in, hospice was wonderful and words (and apologies) were spoken that would never have been known to others had she passed suddenly. In the end, she passed peacefully in her sleep. Find peace in the fact that you will share your dad's final moments with him. I think your heart will heal a little more quickly knowing you were by his side! Godspeed

Livserb99 sending you prayers and healing strength and kind energy. Your father is going on to his next journey and he will know the secret soon. Wishing him peace and comfort and you as well.

I'm very sorry your father is going through his condition at such a young age. May God find him, you and his family comfort.

First and most important is to make sure your dad believes God, not just "believes in". It's critical that he believe what God says in His Holy Word. Read to him from the tenth chapter of Romans in the New Testament. When he believes with all his heart, death is merely stepping from one room into another. My prayer is that every member of your family finds peace during this difficult time.

Would you want to know what it is like through the eyes of someone who is the patient? There is a Facebook page called "Brooklyn's Journey Home." This young lady posted on Dec. 28, 2021:

"Start here!
"I’m starting hospice...
"I recently left my doctor’s office with a referral to hospice. Hospice is end-of-life care. Over the last two years of battling my connective tissue disorder, my health has been in a downward spiral. Specialist after specialist has given up or pushed me aside. All treatments have failed. I have fought very hard for a very long time. With much prayer, Godly counsel, and medical advice, God has made the way forward clear. It’s time to go home."

Perhaps reading her story (scroll to the bottom of her FB page and read up) can answer some of your questions. She is a remarkable young woman. If you can find her other page, you can read her journey as a musician that was interrupted by her illness.

I have been through this a few times. Is it long, depends, it is as long as it takes. It it sad, definitely. His attitude will make a difference and if he able to communicate his wishes, ask him. I would say visits from friends, neighbours and just having company is important, do not let pain and mobility issues interfere with social activities, family and friends, you have to change how these happen, he will tire quickly but when he is alert and active I am sure he will welcome company or want to do anything he is able to do within his limits.

If/when your dad goes on hospice care, they can provide a social worker even a chaplain until 12 months after he passes. Please take advantage of this, y’all are so young to go through this. Even in hospital, there should be one of these you can speak with. Hospice will answer your questions and can tell you generally what to expect. Prayer and blessings to you and your family. Liz

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

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.