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My Mom is Dying from Liver Disease!

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Posted 5/16/2009 3:44 AM (GMT 0)

Hi all,

I'm here tonight because my Mom is dying from liver disease. The doctor told her 3 weeks ago she was in the end stages and all they can do for her now is to make her comfortable. She is scared of dying apparantly because she cries all the time, takes Xanax and sleeps 98% of the time. She can't talk about it and it's getting to me. They said she had 1 to 6 months to live. We are having 7 - 9 liters of fluid drawn off of her abdomen weekly now. My Dad will be 84 on May 29 and he just had a double bypass done Dec 23, 08. He is not accepting this news at all. Very much in denial, they've been married 64 years as of April 9th! My Mom will be 82 August 1st. It is so hard for me to deal with the two of them. I am worn slap out and can't get anything done for myself between their doctor's appointments, ambulances taking them to the ER and having the paracenthesis(sp)done weekly! I know all about using the lactulose for the amonia levels, I've dealt with that for some time now. I'm here for support. I have a brother who lives in Massachusettes and we're in Louisiana. He's very business oriented and made it very clear while he was here that Boston was his home and he's sorry that that he can't be here. What is ironic is he's their biological son and they adopted me and I care more than he does! Yes, I'm angry, I'm sad, I'm scared, and need some one to talk to. He came in for Mother's Day but all he wants to do is put my parents into an Assisted Living Facility. I told him absolutely not! My mother considers that too much like a nursing home and won't hear of it. She wants to be around her personal things and spend her last days in familiar surroundings. I'm on my own here with no help and I try so hard to stay strong for all of us but it's getting harder by the day seeing my Mom deteriorate. I need to know what to look for or how to tell when the end is near, I need to be able to prepare my Dad. As far as funeral arrangements, they are all made! My Dad and I went in February and picked out their caskets and paid for everything so all I have to do is contact the funeral home when the time comes and they'll take care of the rest. Can anyone tell me anything that might help me? Thanks in advance for any info you might share with me, either by first hand experience or research would be greatly appreciated. You all have a great day.

Posted 5/16/2009 4:31 PM (GMT 0)

PNut, thanks for starting a new topic, as I'd requested.  I've already posted a reply to you in the other thread, so I will leave it to others to add their suggestions.

Hugs,

Connie

Posted 5/18/2009 2:19 PM (GMT 0)
have you thought of getting hospice involved. Hospice takes care when people are told they have six months to live. They are really wonderful and will take some of the stress off your shoulders and can let you know what to expect when its closer. I know for my aunt(she had brain cancer) she couldnt tell who her family were, she started talking about the past, and also talking to her mom that had passed away previously. i cant honestly tell you what to expect but i know that it is tough. My mom has hep c and cirrhosis and it is a very tough road. i say get hospice involved and just continue to be there for your mom. My sister also hasnt helped me with our mom to so i know what you are going through. if you need to talk contact me and i will give you a number or yahoo addy to contact me.

Posted 5/19/2009 10:39 AM (GMT 0)

 

pNut,

 

You are a wonderful daughter for taking care of your parents the way you do.  I think it is beautiful that they have been married for 64 years!  How incredibly blessed they are to have shared so much time together and to have shared their lives with you. 

 

It is difficult to say what you should expect as each case is very different.  God has mercy and she will likely succumb to the hepatic encephalopathy and slip quietly into a hepatic coma and pass away. 

 

I am concerned about the use of Xanax.  Xanax is very hard on a failing liver and will accelerate the cirrhosis.  It will build up in her system because the liver is too sick to process it.  It will rob her of her consciousness.  She will end up in an incoherent state unable to communicate effectively.  It will also be difficult to discern whether she is in a drug induced coma or a hepatic coma.  I would discuss non-narcotic measures to keep her comfortable with her doctor.

 

Let’s face it, your parents are mature adults and know that death is inevitable as it is for all of us.  They have been together for so long that they likely fear being separated more than they fear death itself.  I’m sure your Mother is concerned about how your Father will get along without her.  He will need to reassure her that he will be okay.  With love and support you can all find peace with this and turn a frightening experience into an enlightening experience.  She can return to God peacefully and with no regrets.

 

I agree with Worriedgirl regarding Hospice.  The nurses at hospice are trained to help you through this experience.  They will afford you the break that you so desperately need to get your second wind.  You are going to need your strength to help your parents through this difficult time. 

 

You will be in my prayers.  May God bless you all.

 

Penny

 

Posted 5/25/2009 4:08 AM (GMT 0)
Thank you both for replying to my post! It helps to know I'm not alone going through such a very frightening experience.  My Mom has been nauseated and vomiting for the past few days and it scares me because I know this is caused by her liver disease. I am calling her doctor in the morning about the nausea and will also ask him for another altenative to the Xanax. Thank you for this info Penny. Worriedgirl, my Mom doesn't even like for Home Health to come in twice a week much less Hospice but I will check into it, I deperately need the help and so does my Dad, we are both worn out! I'll keep you both in my prayers as well. My email is [email protected] if you'd like to get in touch with me. I definitely need support. Thanks again.

Pnut

Post Edited (Pnut4044) : 5/24/2009 10:11:09 PM (GMT-6)

Posted 5/26/2009 6:19 PM (GMT 0)
Pnut, hi and welcome to HealingWell, I can totally relate to your story as my mom died in Nov 07 due to her liver disease. My father was 84 at the time and was having a very difficult time dealing with the impending death of my mom. They too were married for 64 years. I agree, hospice is a wonderful option for respite care and for patient care. It is so hard to think rationally when you are exhausted and facing such dread. We have a combination of depression and being tired all the time. So, getting hospice is a positive action for everyone. I would disagree with PCwife only in the fact that I think pain pills are necessary if pain is involved and Xanax is sometimes very appropriate if the person in overcome with fear and anxiety. Your mom is in the last moments of her life so worrying about how the pills will affect her liver is irrelavant now. I am sure that your mom is terribly afraid and therefore very anxious. If the Xanax keeps her calm and sedated then I say "Good" for her. Facing impending death has got to be a horrifing experience for anyone. When a patient is admitted to a hospice facility you'll find that they keep them heavily sedated. They sleep most of the time and eventually they pass away quietly. In my mother's case they gave her Haldol and Morphine. It kept her in a comatose state until she passed. Rather than be upset my dad and I were relieved. No more pain, no more fear, and no more tears. Between your dad, you, and the Dr you will come to the best solution for her care. AS for your brother, please don't be in a hurry to judge him. I say this because I went thru the same thing with my brothers and sister. I ended up being the one that had to do everything. They justified it by claiming they lived in Georgia while I lived within 4 hrs of my parents here in Florida. At first I was really angry with them. After a period of time I realized that they could not cope with her impending death at all. So for them it was out of sight out of mind. I on the otherhand am a realist and I knew that I could cope. It wasn't hard and it wasn't pleasant but I dealt with it. I cried alot and felt alone in her care but I can look back on it and see that I did what I had to do. I am not sorry about any of it. Some people are strong enough and otheres aren't. I had tremendous guilt at first because I am an RN and felt that I had participated in saving hundreds of lives. Why couldn't I save my own mother? But; I have to say that after she died and I could look back on it I DID do everything I could have done. Some things are just not in our control. It's been hard I won't lie to you. I miss her terribly and I still cry sometimes. But in the end, we all will face death and I keep my faith alive believing that we will all see each other again. Keep strong and know that you are a wonderful blessing to both your mom and dad. You are their daughter whether you were adopted or not! They are your parents whether adopted or not.........
Posted 6/5/2009 4:08 PM (GMT 0)
Dear All,

My Mom also has cirrhosis, she was diagnosed a year and trree days ago. I too take care of her alone, I have four other siblings that wont help eiher. I can't stand what this horrible disease is doing to her. I too need to know what to expect. Her doctors really don't tell me how long she will live.  They just tell me not to bring her back to the hospital,keep up with her meds, and she too has her stomach drained every other week. For the past month, she has been doing quite well, until yesterday her ammonia level is up(I don't need a blood test to tell me)This disease is so horrible and I learn new things about it everyday. I just don't know when its the end. I hate to see her like this, and I am so glad I found this website.I too need people to talk to. My mom lives with me and my husband and three children. I too have all the same emotioms as you do pnut. Let me know if there's anything you know that I don't. Thanks for listening and good luck and god bless your mom.

Posted 6/5/2009 4:13 PM (GMT 0)

mymom2, welcome to the forum.  You have replied to an older post.  I suggest you start a thread of your own by clicking on New Topic, to introduce yourself and your situation.  In this way, you will get the most responses.  Otherwise, it would be easy to overlook you.

Again, welcome.  I'm glad you found us.

Posted 6/13/2009 1:53 AM (GMT 0)

mymom2 - my 72 year old  mother is also currently dying from non-alcoholic cirrhosis.  We were just told today that she has 1-2 weeks. Her symptoms were accelerated when she fell on April 25.  Since then her kidneys have also started to shut down, she is retaining fluid which has led to congestive heart failure.  To complicate matters further my mother is also diabetic and has suffered mini-strokes.  Just this past Sunday I was able to help her eat and she was able to communicate with us (however sometimes she was not lucid).  Monday we believe she suffered another stroke and cannot communicate with us at all.  She is not eating and sleeps the majority of the time.  She was in the hospital for 2 weeks and has now been moved to a Skilled facility where Hospice will oversee her care.  From all that I have been told, cirrhosis can be a very painful death and this is something we do not want.  They do give pain medicine but for now it is only when we feel that she is in pain (she becomes agitated and will moan).  While I do not want my mother to die, I want it to be painless.  It has really been hard going thru all these ups and downs - at the beginning of May she was progressing really well and doing therapy - then all of a sudden we are back at the hospital.  People handle grief different ways.  Some will be right there and others chose not to be.  I personally will be there to the end.  While I am scared - I know that my mother would do that for me.  I will truly miss her.  I will keep you and your family in my prayers as I do know how hard it will be.

God bless.

Posted 6/13/2009 4:01 AM (GMT 0)

grtmom, welcome to the forum.  My heart goes out to your mom, you, and your entire family.  It's not an easy disease to deal with, for sure.

Please keep us updated.

Hugs,

Connie

Posted 6/14/2009 2:18 AM (GMT 0)
Hi and very sorry to hear about your mother, but guess what my mother now 79 is going through the same proceedure, and i am very very sad, that there is nothing we can do.

her stomach very swollen and she has not gone to the toilet for  3 days using lactouse, doctor given pain patches, lower dose which she is sleeping all the time in and out of consiousness, if not for that she in a lot of pain, doctors provided a nurse who comes round for the past 3 days now but she is still eating a very small meal and talking but should we let her live her last by being in and out of drowsiness?

I am 1 of her 3 sons, she is at my other brothers whom she has lived with 13 years and my sister in law like a angel watching and caring for her every need, i cant seem to take it looking at her like this.

i am scared and feel totally helpless, just praying, anything you suggest.

Posted 6/14/2009 4:18 AM (GMT 0)

Matt, welcome to the forum.  I am sorry that your mother is suffering from liver disease.  Regarding the drowsiness/sleeping, it is a part of liver disease and nothing you can really do about it.  Just make her as comfortable as possible as it appears she is in an advanced stage of disease.

You will find a lot of support and information here, as so many here are experiencing the same things or their loved ones are.

Posted 6/14/2009 4:30 AM (GMT 0)
Hi Matt and welcome to HealingWell. I am so sorry that you and your brothers are having to see your mom like this. It is so hard and heartbreaking. The best advice I can give you is to spend as much time with her as possible, say all the things you want to say, and be at peace with yourself. No one can tell you when she will pass but there are those that are with her everyday that will notice the changes. Don't be afraid to see her, hold her hand, kiss her cheek. Even if it comes to the time she cannot speak to you she can still hear and feel you. Keep us posted and GOD Bless.
Posted 6/15/2009 1:46 AM (GMT 0)
Thankyou all who left me a message, i have taken the pain patches off my mother at 11am this morning so she could wake up, and you are right even though sleepy she can hear us and occasionally will open her eyes for a few seconds listen and answer in a blurred voice so she still very aware.

i am staying at my mums and awake at 2.30am in the kitchen while she is sleeping in the living room with my sister in law next to her, in case she wants to go toilet (using a commode), she know has her mouth open and we are feeding her bits of water through a syringe and must speak loudly to her for her to swallow, which she was doing fine in the daytime, but way to drowsy now for even to do that.

She has been sleeping on her back for a few days now as she is in way to much pain to turn either left or right.

it is unbelievable that she was only sitting besides me where i am on my laptop now a few days ago talking, laughing and now she has not left her bed which my brother bought downstairs in the living room, unaware of whats happening.

The problem is i am so helpless in doing anything for her, we all are.

we get so busy in our lives and spend less time with the ones we love untill its to late,  the stories they told of years gone by, poems they new, and the GOLDEN advice they readily give..........always concerned with their childrens worries and looking after the grandchildren, whom love my mother more than they love me(which is a lovely thing), my mum was always slipping all the grandchildren money or buying them presents.

I only pray that she comes back to us cured and well, or departs with no pain whatsoever..........................i have become very upset and tearsome now so i will end and keep you posted, please for whoever reads this please remember her in your prayers.

Thankyou.

Posted 6/15/2009 2:22 AM (GMT 0)
Hello Mattxxxx and welcome to HealingWell. So sorry that you and your family are going through this . Been there done that .....so I know how scared you must be. This is one ugly disease. I never knew what I was going to wake up to or come home to. When my husband's finally days came.........I thought that I was ready...........Not by a long shot. He was able to hear me even though he was in a coma.........he waited 12 hours for his daughter to arrive.........as soon as she walked in and said daddy......he took his last breath. It was the hardest thing that I ever had to do. But like rick and George said..........."without the pain ...I'd have had to miss the dance''.

Take care.........thoughts and prayers..........
Posted 6/15/2009 11:42 PM (GMT 0)
Wow - I can't believe I am actually reading these posts and many people are going thru what we are going thru right now.
I just gave the hospital the official DNR this afternoon and they won't do anything more except pain control....so we maybe have a week or less?
My mom has idiopathic liver disease, her kidneys are not working well now and she has infections in her abdomen & bladder.
She also has alzhymers so the confusion is even worse with the liver disease.
I am just trying to find out what to expect now that treatment will be no more.....how long does it take, what kind of death is it....how does it happen....how long.....too many questions....not sure where to get or find answers or advice.

My dad is 81 and I think in denial.....and I am an only child so it's really stressful & frustrating.

Posted 6/16/2009 12:12 AM (GMT 0)

VancLisa, I'm so sorry that your mom is dying from this horrible disease.  I do wish you had found our site sooner, as there is a lot of support here, as you can see.  Usually, at the end, the patient's kidneys shut down and urine is very dark and sparse.  They also stop eating, though may take a little water through a straw or squirted into the mouth.  Quite often, they will slip into a coma before passing on.  There really is no way to predict how long your mom now has left.  If Hospice is involved, they are very good at predicting when the end will be when it gets to within a week or a few days.  They also will make sure to keep the patient comfortable and be a support for the family.  Even if she is in a NH or hospital, you could ask that Hospice be involved.

Please continue to post here, even after your mom passes.

Hugs,

Connie

Posted 6/21/2009 2:30 AM (GMT 0)

My Mother passed away this past Monday evening at 9:58 p.m.  We were able to get her back to the Lutheran home on Friday as Hospice was full. Just the Sunday prior, I was feeding her and she was communicating to us.  The next day she took a turn and she quit eating/drinking.  She was pretty much in a coma - even if her eyes were open she could not see us - but she did hear us as we continued talking to her until her last breath.  The Sunday morning before she passed the sound of the "death rattle" was apparent.  I am not trying to scare you (as it did me) but it basically sounds like she was drowning.  The nurses assured me that she was not (they may have just been trying to ease my mind).  Sunday evening she looked so peaceful and her breathing was at 6 breathes per minute at 2:00 a.m. and we were sure it was the end.  The nurses came in to turn her and it evidently was not her time as she became restless and her breathing became more labored.  This went on until 6:00 p.m. on Monday when she became more restful and the labored breathing eased just a bit.  While holding her hands and talking to her, we were also monitoring her pulse which we felt become more faint.  My dad, my brothers and sisters, and her grandchildren were in her room and around her bed when she took her last breath.  My heart is broken but I know that my mother is no longer in pain.  My sister and I, called ourselves "Two Sisters Bathing and Beauty Salon" as we would bathe her and fix her hair twice a week.  After she passed, the nurses were going to bathe her prior to the funeral home picking her up.  We asked if we could do that.  So I washed her hair (shower cap wash) and bathed her.  She was so swollen - it just does not seem fair that someone so special and good has to endure so much pain.   I so desperately miss my mother and watching my father mourn is just so sad.  Please keep my family in your prayers.

Posted 6/21/2009 2:53 AM (GMT 0)
VancLisa - as I mentioned my mother just passed away this past Monday. The antibiotics were stopped on Friday morning. She had also been on lactulose but it became ineffective. When the "rattle" sound came on Sunday, they started giving her Lasiks to help dry up what we were hearing, however, because her kidneys had shut down we believe it could have made the swelling worse. Hospice did get there Monday afternoon but we already knew that it would be that day. They did change up her pain medicine but it did not arrive until after she had passed. I do feel for you as it is heartbreaking to watch. While my father knew that she was dying, he never really thought it would be as quick. My hindsight - her body was shutting down the prior week when she stopped eating. We did not want my mom to pass alone so we stayed right by her side the entire time. As Hep93 stated, her urine was dark and sparse (she was catherized). My mother also ran a fever on Monday - it got as high as 102. We kept a cool washcloth on her head and would also wipe her arms, etc. down. While my mother did not have alzhymers, she did have dementia and also suffered mini-strokes. The liver and kidney functions made this worse also. When she was talking it was hard for her to connect some of her words. I just hate that my mother had to go through so much. She was proud that 24 years ago she survived ovarian cancer (chemo, etc). I believe that some of her problems came from all that her body went through during this time. If I could give one piece of advice it would be to call Hospice. They will answer your questions and help you through this. I am not going to lie - it is tough.

It just seems so surreal. I expect her to call me any minute and when I am at her house, I feel like she is going to come walking down the hall into the den. Prior to her funeral, we found things around the house that her grandchildren had given to her. We took one thing from each grandchild and put it into a memory box which we laid in her casket. This helped the grandchildren.
Posted 6/21/2009 3:54 AM (GMT 0)

Grtmom, I am so sorry for the loss of your mom.  I know how difficult it must have been, but you were very loving in giving her a final bath and hair wash.  My heart goes out to you and your family. Please be comforted by the thought that she is at peace and not in pain now.

Hugs,

Connie

Posted 6/21/2009 4:07 AM (GMT 0)
((((Grtmom))), Please accept my sincere condolences on your dear mom's passing. What a beautiful act of love it was to bathe your mom. What wonderful daughters you are. And that memory box was priceless. You mom must so proud of you both.

(((VancLisa))), lot's of thoughts and prayers are with you during this sad time........Each journey is slightly different. I had the same questions about my husband's journey........I had him at home with hospice involved and when his last day came..........I knew. I was terrified on one hand and on the other hand I knew that all his suffering would be over soon.

Thoughts and prayers for both of you...........
Posted 8/26/2009 12:58 PM (GMT 0)
Hi all,

My Mom passed away on Aug 3 , two days after her 82nd birthday, after a long battle with this disease. After the doctor told us April 23 that there was nothing else they could do for her but keep her comfortable, she lasted a little over 3 months. The last 23 days she was in a nursing home along with the help of Hospice. I was with her from 8 AM - 6 PM every day until I went out of town to go on vacation. The day I left I went to see my Mom and tell her I loved her and would be back in 10 days. We had a good conversation but, when I came back she just stared right through me, I felt like she didn't know who I was. She hung in there for another week and then went with the angels. She and my Dad had been married 64 years and he is one more lost puppy!  I have him living with us now and he is grieving so much. I took him to grief counseling yesterday and it seemed to help somewhat. I know this isn't what you all wanted to hear but it's reality.  I have yet to breakdown. I guess because I spent so much time with her for the last 4 months that I know she's at peace now and has no more pain. I also know she's in a much nicer place.

As far as the disease goes and remember each person is different but.....3 months ago, they were tapping my Mom's stomach once a week and getting anywhere from 7 - 9 liters of fluid. Toward the end, the last 3 weeks of her life, the nurses were unable to even get a full liter. This might help you all as far as knowing how close you are to the end. I hope this little tidbit will help...I know I was full of questions and wanting to know what signs to look for.  God bless you all who are living with this disease with someone you love. If you have any questions, I'll try my best to help you all I can. Please feel free to contact me.

Hospice was great giving my Mom the best care but they weren't really there for the family or to answer many of our questions. They don't really know either, only God, but they told us on July 30, they doubted she would last through the weekend. She did, my Dad spent that Sunday night next to her and called me at 7 Monday morning to come get him. I did, we came home, I fixed him breakfast, then around 9:30 AM the Hospice nurse called and said my Mom had no vitals, the death rattle had begun and if we wanted to speak to her before she passed we'd better come then. We got there in 7 minutes and spoke to her, told her we loved her, etc.... then I went outside later to make a phone call and Dad said he'd go with me, we weren't gone 3 minutes and when we returned to her room, she was gone! This was at 11:45 AM I walked in and stopped dead in my tracks and said to my Dad, I think she's gone. He went over to her and said Sugar, I think you are right. Ok, I've rambled enough. To all of you, God bless and give you strength to go through this with your loved ones.

Post Edited (Pnut4044) : 8/26/2009 7:31:20 AM (GMT-6)

Posted 8/26/2009 2:18 PM (GMT 0)
((((Pnut4044)))), Please accept my sincere condolence on your dear mom's passing. Many thoughts and prayers are with you and your family at this sad time.

Take care.....thoughts and prayers..........
Posted 8/26/2009 3:09 PM (GMT 0)
I am sorry to hear about your mom.  My prayers are with your family. 

Posted 8/26/2009 10:19 PM (GMT 0)

grtmom said...

My Mother passed away this past Monday evening at 9:58 p.m.  We were able to get her back to the Lutheran home on Friday as Hospice was full. Just the Sunday prior, I was feeding her and she was communicating to us.  The next day she took a turn and she quit eating/drinking.  She was pretty much in a coma - even if her eyes were open she could not see us - but she did hear us as we continued talking to her until her last breath.  The Sunday morning before she passed the sound of the "death rattle" was apparent.  I am not trying to scare you (as it did me) but it basically sounds like she was drowning.  The nurses assured me that she was not (they may have just been trying to ease my mind).  Sunday evening she looked so peaceful and her breathing was at 6 breathes per minute at 2:00 a.m. and we were sure it was the end.  The nurses came in to turn her and it evidently was not her time as she became restless and her breathing became more labored.  This went on until 6:00 p.m. on Monday when she became more restful and the labored breathing eased just a bit.  While holding her hands and talking to her, we were also monitoring her pulse which we felt become more faint.  My dad, my brothers and sisters, and her grandchildren were in her room and around her bed when she took her last breath.  My heart is broken but I know that my mother is no longer in pain.  My sister and I, called ourselves "Two Sisters Bathing and Beauty Salon" as we would bathe her and fix her hair twice a week.  After she passed, the nurses were going to bathe her prior to the funeral home picking her up.  We asked if we could do that.  So I washed her hair (shower cap wash) and bathed her.  She was so swollen - it just does not seem fair that someone so special and good has to endure so much pain.   I so desperately miss my mother and watching my father mourn is just so sad.  Please keep my family in your prayers.

i am terribly sorry about your mom. please keep visiting the site you will still need support

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