Difficult decision - should I bring husband home? He has end-stage liver disease

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SLH1974
New Member


Date Joined May 2009
Total Posts : 7
   Posted 5/28/2009 6:51 AM (GMT -7)   
Hi - I am frightened about bringing my husband home. I can get home health care or hospice (not both according to what the hospice worker told me). I can hire someone to come in a few hours a week. My daughter and her husband say they will help, but my daughter can't understand why I am scared. She is angry with me because I have said that I am going to bring him home because she wants me to. She said today not to bring him. I want to but I as I said above, I am scared. I also feel that my family doesn't really appreciate what I will be going through if I do bring him home.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/28/2009 8:46 AM (GMT -7)   
SLH, welcome to the forum.  Is your husband in the hospital now?  Have the doctors given a time line as to how long he will live.  With Hospice, it has to be 6 mos. or less.  What diagnoses does he have?  What are your fears?  Do you work?  Please give us a bit more information.

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


SLH1974
New Member


Date Joined May 2009
Total Posts : 7
   Posted 5/28/2009 9:07 AM (GMT -7)   
Hi hep93

My husband has been diagnosed with crypogenic liver disease. My husband is currently in rehab at a nursing home. I have heard opinions of 3 to 6 months to 2 to 3 years for him to survive. He is 75 and a doctor suggested hospice to me at the emergency room on Sunday. I have talked to a hospice worker and she said according to his blood levels of IRV and something else (protein - I think) he would qualify for hospice.

I wonder which would be the best, hospice or home health care?

I have many fears. I am also afraid that he will start bleeding. I have been told if that happens he needs to get to the ER right away. We live 20 to 25 miles from a hospital. One is that I won't be able to take very good care of him. I am also afraid that it will be very difficult and exhausting for me even with limited assistance available. I also dread not having some time to myself and being able to go away from the house when I want to.

I am 62 years old. I had a small part-time job at a little library until this all started. I sell items on ebay (mostly art books) and I occasionally sell a painting.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/28/2009 1:58 PM (GMT -7)   

Thanks for the additional info.  Unless he needs full time nursing care and can be admitted to a NH, it seems you really have no choice but to bring him home.  Set up all the help you can beforehand, though.  When Hospice gets involved, it means there is nothing else that can be done for him and he will just be given palliative treatment; i.e., narcotic pain meds and maybe some anti-anxiety meds, plus anything else to make him more comfortable or his care easier (oxygen, diapers, etc.)  The amount of time that hospice nurses spend with patients depends on the patient's medical status and the support system that is in place.

I don't know what type of insurance he has, but that will also play into what type of care he can have at home if Hospice is not involved.  You mentioned Home Health Care.  That usually consists of someone coming to the home several times a week to monitor vital signs and medication.  They will also do things such as flushing or changing a catheter.  Hospice also offers respite care, so that you would be able to get out of the house for a few hours and know that he is being cared for.  The doctor will be the one to order either Hospice or Home Health.

If you possibly can make time to check both of these types of care out before making a decision, it should make it easier for you.  I believe you need to have some type of home care in place, though.

Does your husband have a Living Will?  Are you his Health Care Surrogate or do you have Power of Attorney?



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

Post Edited (hep93) : 5/28/2009 3:01:11 PM (GMT-6)


SLH1974
New Member


Date Joined May 2009
Total Posts : 7
   Posted 7/13/2009 4:31 PM (GMT -7)   
I wanted to let you know that I did bring my husband home. He only lived just a little over a month after he was diagnosed with end-stage liver disease. My daughter and her husband were wonderful the way they helped. The hospice people were wonderful too. I am so glad that we brought him home although it was very hard. It is hard to believe that everything happened so fast. I miss him so much but wouldn't want him back the way he was at the last.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/13/2009 6:10 PM (GMT -7)   

SLH, I'm so sorry about your husband's passing.  Thank you for letting us know.  And please do continue to post here when you feel like it, as your experience can be of great benefit to others, and his disease would not have been for nothing.

Hugs,

Connie


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


SLH1974
New Member


Date Joined May 2009
Total Posts : 7
   Posted 7/13/2009 6:30 PM (GMT -7)   
Connie - thank you so much. I keep wondering why he wasn't diagnosed many years ago. He had been diagnosed with lymphoma although they didn't do a spleen biopsy. I asked the doctor at Methodist Hospital in Indianapolis if it would have made a difference if we had known earlier about the liver disease and he said that it would not have. I'm not sure I believe it, but we didn't have any advance warning so he was almost gone when they diagnosed him.

I sure have learned a lot about liver disease and I know it is a terrible disease to have and terrible to watch someone go through everything tha tis involved.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/13/2009 8:51 PM (GMT -7)   

Since it was cryptogenic liver disease, I doubt anything could've been done if he had been diagnosed earlier, except perhaps with diet...which might have extended his life a bit, but I think the end would've been the same.  Looking back and second-guessing ourselves is something we all do, but it really does no good.  You did the best you could with the information you had at the time.  We can just be grateful that he didn't suffer for months and months or even years.

Hugs,

Connie


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


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/13/2009 10:19 PM (GMT -7)   
SLH1974, please accept my sincere condolences on you husbands passing. My husband passed away over 2 years ago with liver disease. Hospice was involved with him also. They were wonderful. Like you, I was so fearful to have him at home, but they got me through it. And then some. about 7 months after his death I started going to one of their bereavement groups.........Best thing that I could have done for myself. They gave me the tools to heal. I highly recommend it for anyone who's lost a loved one.

Try to let go of the "what ifs" and the "if onlys". It's hard...........but it was in God's hands .....not ours.

And do come back when you are up to it........This forum has been a life saver for me both before his death and after.........


Take care..........lot's of thoughts and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

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