liver cancer,cirrosis, hep b

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4uiamhere
New Member


Date Joined Mar 2010
Total Posts : 11
   Posted 3/1/2010 6:05 PM (GMT -7)   
Hello all I am new here and I hope its ok to write about liver cancer here I did not see a section for it. My dad was diagnosed in 9/08 with primary liver cancer. he had hep b when he was a child and has lived with cirrosis all of his life from it. He is not a drinker. He is 77 years old and is doing pretty bad. I live 2.5 hours away from him. I try to be with him as much as I can but have 3 kids and husband to take care of. I can relate to alot of the posts on this forum and want to thank you all for your information and helpfulness. When my dad was diagnosed they gave him 6 months its been almost 18. He refuses to give in to the diseases he has and I respect him for that. He had 1 chemo embolization, had many episodes of encelopathy, many trips to the hopital, put in a nursing home to die, only to be told after 45 days he had to go home there was no reason for him to be there. Alot of things come down to money and that really makes me sick. He has fallen a couple of times broke ribs got stitches in his head and last week broke his colar bone. He was prepared to die in the nursing home but didnt. His wish is to die at home. The problem is he keeps falling due to encelopathy or weakness in general. He has a wife and is on hospice care but they only come 2x a week. We all live in a diffrent state so its hard to be there for him. I struggle every day with not being able to be with him. His wife says she cannot handle him and put him in a nursing home last week. The nursing home is even farther than their house 3 hour drive. His wife is angry at him because of his behavoir and I try to explain to her that its the disease not him. She doesnt even go to see him every day. He is on lactulose and a million other things so I know all about the violent diahreaha (thats what my dad calls it) He was on pain meds last week for his collar bone and kinda slipped into a semi coma. I thought that was it. I sat by his side for two days praying for God to take him before he had to go to a nursing home. He rallied back and is walking and alert again, but stuck in a home (a really gross one too) We dont have money so its not an option to put  him in another one. Now his wife wants to take him off all meds, he told me last week he was not ready to give up. What do I do she has the control, I love my dad I dont want him to suffer but he is not ready and should not be forced to give up his meds. Sorry so long! i appreciate any feedback.
Thanks Sue

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/1/2010 7:03 PM (GMT -7)   

Sue, welcome to the forum.  It's really remarkable that your dad has done so well and lived so long with liver disease.

You are in a difficult situation.  Are there any inpatient hospices in his town or nearby?  That might be an answer for him and an alternative to a NH.   I don't see how his wife would have the power to take him off meds if he is in a NH.  That is a doctor/nursing decision.  However, with you living out of the area, you do not have much control over the situation.  You might consider calling the Area Council on Aging in your dad's area and ask to speak to a social worker.  See what they recommend.

Big hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


4uiamhere
New Member


Date Joined Mar 2010
Total Posts : 11
   Posted 3/2/2010 2:28 PM (GMT -7)   
Hi Connie thanks for the reply, dad fell today in the nursing home. He tried to go to the bathroom without assistance. He is not hurt to bad this time but very weak. He was crying today and says he will do whatever his wife wants because he is scared and does not understand what is going on. He is due to be released tommorow because this was a 5 day relief stay for his caregiver. He will go home tommorow but as he needs around the clock care he cant stay there. His wife will call 911 and then when the hospital wants to release him he can hopefully go to the nursing home he was in before. Its more comfortable there and there is room for company unlike the place he is in. I wish I could give him round the clock care, but how do I bring my kids, I dont have anyone to watch them. I am planning to be at his side when he goes so Im saving my babysitting favors for that time. Im very torn. It all comes down to money, insurance and that sucks. He worked his whole life and when he needs help most he is denied because of money.
Thanks for listening

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 3/2/2010 2:37 PM (GMT -7)   
what about bringing him to live with you, would that work? i know it is hard, i was in that situation except that my mom had no spouse. my sis was the one holding me back because she wasnt ready to let go.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/2/2010 2:49 PM (GMT -7)   

4u, unfortunately, money and insurance does play a big part in the care one receives--or not.  I hope that your dad can spend his last days in an environment that is more comfortable.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


4uiamhere
New Member


Date Joined Mar 2010
Total Posts : 11
   Posted 3/2/2010 3:19 PM (GMT -7)   
They are sending him home no more hospital no more nursing homes they said medicare wont pay for it so she has no choice. I would love to have him come here but his wife wouldnt go for it. We are in another state. Im just gonna try and be there as much as I can. His wife said she has no choice so he goes home tommorow at 1 oclock. I thought I read something about codes on this board but now I cant find them, something about codes and medicare for in and out of hospice.

I talked to her about the medications that are keeping him alive and if he should keep taking them, she said as far as she knows his is supposed to take them. Without his mobility he really is depressed and scared, when, how and who makes the medication decisions??

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/2/2010 5:59 PM (GMT -7)   

The prescribing/attending physician makes the medication decisions, unless the patient has a Living Will that states he does not want to continue taking them, or if he is coherent he can voice that choice himself.  Since he does seem to know what is going on and is fighting to stay alive, it's his choice to continue taking them as prescribed.

How about getting Hospice involved?  They would send a nurse to the home at least twice a week.  It does not cost anything.

I don't know what codes you are talking about.  Perhaps it wasn't on this forum.  I do know that Medicare pays 100% for 30 days at a NH or rehab facility.  Has he used that up already for the year?

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


4uiamhere
New Member


Date Joined Mar 2010
Total Posts : 11
   Posted 3/2/2010 6:23 PM (GMT -7)   
He has been on hospice for about 5 months they come 2x a week for an hour, which has been very helpful, but now he is getting to a point where he is so out of it sometimes he is a danger to himself. Hes a big guy and he has been falling alot stitches, broken ribs, broken colar bone all within a month.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/2/2010 9:19 PM (GMT -7)   

Thanks for clarifying the hospice situation, NC.  Medicare will pay for durable medical equipment, if they get an Rx from a doctor.  It might help if he has a walker, a bedside commode, and a bath chair.  He is obviously having trouble moving about and this equipment would be helpful and is really necessary.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


4uiamhere
New Member


Date Joined Mar 2010
Total Posts : 11
   Posted 3/3/2010 2:11 PM (GMT -7)   
Thanks so much Connie he is getting a hospital bed today for his house a portable commode and he has a walker already. Im waitting to hear how the transfer home went. I will go tommorw for a visit with him and know more. He was in a NH for 45 days last fall. And from what she is telling me he cant go back unless he is getting some kind of therapy. Im hearing all this second hand so sorry if Im getting things wrong. I like to be there when these meetings occur so im clearer on the info but I cant always be there. My main problem is not being able to be there as much as I would like but thats just the way it is I guess. He is kinda on a roller coaster right now one day hes with it one day he is not. He is not that yellow could he still be close to death if he is not yellow?? I went back on the posts and found a beutiful post to the caregiver from a patient. Im going to cut it out and give it to her I hope it helps her she is so overwhelmed. Thanks for being my friend through this I really appreciate it.
Sue

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/3/2010 4:11 PM (GMT -7)   
Sue, I'll bet that post was from JohnCT.  We haven't heard from him in a long time and really miss his presence here.
 
Not every patient turns yellow.  It's a very individual disease.  Hospice should also be able to offer some days of respite care so the caregiver can get a break to go out and get away once in awhile.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


4uiamhere
New Member


Date Joined Mar 2010
Total Posts : 11
   Posted 3/3/2010 5:10 PM (GMT -7)   
Yes the post was from John, Im sure he will be glad to know its going to good use. Probably over and over again. I think thats what the 5 days were respite care. Im not sure as usual. He is home and happy as a clam. He had his coffee at his table he has his PJs on and is resting. I am bringing him some goodies tommorow. A special pillow to hug, card from grandkids pictures from grandkids and some tasty treats that he will allow himself to have. Thanks for your kindness.
Sue

4uiamhere
New Member


Date Joined Mar 2010
Total Posts : 11
   Posted 3/5/2010 6:23 PM (GMT -7)   
I went for a visit yesterday and he was very lethargic, the hospice worker said his vitals were fine but also said that did not mean he wasnt on his way. He is not yellow. He slept all day I sat by his side rubbing him and telling him I love him he was unresponsive then he woke up at around 10pm when we were changing him and wow what a diffrence, he was talking up a storm, asked for a drink and sandwich. woofed that down and then wanted some chicken soup and more conversation. We talked for a while and then we had to get some sleep. This morning he woke (he is confined to his bed) He was alert and full of life, he is finally realizing he cannot do the things he used to and letting go of his male ego!! No offence boys:) We talked for a couple of hours, he mentioned seeing my sister (who has passed) and she told him he is not ready yet. I have been waiting for those things to happen and am glad that he knows they are there for him. Im so glad I went I just called and he said he just ate a Quiznos sub. I love my Dad!!! if anything were to happen tonight at least I had yesterday and today with that amazing man!!!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/5/2010 9:31 PM (GMT -7)   
I am glad that you had some good time with your dad.  The visitation from those who have passed on is something that happens when patients are nearing death.  It is also not unusual for them to rally and seem much better just before declining and then passing on.  Your dad seems to be following that pattern, though nothing is written in stone and he could surprise us all.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/6/2010 12:31 PM (GMT -7)   
Joseph, do you have liver disease or a person close to you with it?  If so, please start a new topic and introduce yourself and your situation.  4u is aware that her father is end-stage and hospice is involved.  She is doing the best she can with the situation.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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