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cavkid
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/26/2010 5:53 PM (GMT -7)   
Dad is a Vietnam Combat Vet who was dx'd with Hep C in the 1990's. He didn't respond to treatment and now is in liver failure. He is in the hospital now after the most frightening weeks of my life. My mother is an rx addict and a coward who has left me to watch him suffer and attend him in a way that has left him feeling as if all his dignity has been lost. I sat alone watching him writhe and scream. The smell of ammonia was so overwhelming at times I thought I might lose my mind. The nurse asked him if he knew who I was and he looked in my eyes and shook his head no. My heart stopped with grief.

Mom never even came to the hospital. Instead she sent text messages asking me if I thought he was going to die and if she should be there. I told her she should but she didn't (she lives 20 minutes away). I have been with him for 16 hours a day for the last 4 days. He has improved but not totally and he hates being in the hospital. I have never been so exhausted, angry, or defeated in my life. I have small kids at home and a husband. I have had to take unpaid FML for the last 2 weeks which I can't even think about right now. My father is a soldier and deserves respect and protection from indignity and I would do it again in a second if I had to but I don't know if I can ever forgive my mother for not protecting me from the horror no matter how sick she is with addiction. Dad has been living with me and has been admitted 4 times and she only came once. It's a disgrace.

Just needed to vent.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/26/2010 8:05 PM (GMT -7)   
Hello, Cavkid, and welcome to the forum. I am sorry your father is suffering so. Perhaps if he had tried the combo treatment that came out later on, it might have worked for him. But it's probably too late for that now. You mentioned ammonia and him not knowing you. Do you know if they have him on Lactulose? This is usually prescribed for elevated ammonia levels that lead to hepatic encephalopathy.

I know you are angry at being the one to have to be there for your dad, but honestly how much help do you think your mom could really be if she is an addict?

Like many caregivers here, you seem very overwhelmed. It sounds as though you are forgetting to take care of YOU. You have your own family, not to mention your job. Frankly, it sounds like you are spending too much time at the hospital. Talk to the nursing supervisor if you don't feel your dad is getting the care he deserves. In this forum, we have family members who have hung on in their misery for many months. That takes a toll. At some point, you have to take a step back and find a better way of dealing with the situation--and I don't think it will be your mom's involvement.

You might want to read the information in the folder at the top of the page entitled Hepatitis Resources. It will give you an idea of what to expect.

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

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 8/26/2010 9:31 PM (GMT -7)   
Yes your dad is a Vet and deserves respect for that...but your mother did not cause this disease and is caught up in her own addiction problems... not to excuse her from doing any caretaking... the truth is this disease is just all the things that you say... and blaming anyone doesn't help... it just is... horrible... and this could be a long trail for you ... mine was five years from time of diagnosis.. until he passed away... and we went through many things... and many horrible things... but I wouldn't trade being there for him for anything... and yes we sacrifice... somehow I think God sees and knows these things... my thoughts are with you in these moments... please take care of yourself.. and focus on what you can do and what you can't do.. thoughts and prayers are with you.. Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 8/26/2010 9:33 PM (GMT -7)   
I had to keep working while Mike was dying... and had to balance my checkbook... and my visits... it was a horrible decision to have to make... but my financial needs had to be balanced ... it's tough.. you have to put your family first in this..
There is no pit so deep that He is not deeper still... Corrie Ten Boom

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/26/2010 9:33 PM (GMT -7)   
((((Cavkid)))),  I am so sorry that you are going through this.  I understand your need to do though.   It's a very tough thing to do.   Do you have any siblings that can help out some?   Does he have any siblings?  Are there any close friends of yours or his that can assist in some small way?  People don't know what to do in these situations.......you have to ask for help.....and I am sure that someone will step in and help some.   
 
Does the doctors think that hospice should be called yet?  If he gets released to your home.   Hospice does house calls.  It's a wonderful organization.  Not only does it give comfort care to the patient it also gives support to the families. 
 
If he has insurance........check into home health care if it's not time for hospice involvement.......some insurance plans pay for it. 
 
You need to step back for a day and recharge your batteries and calm down so that you can think clearly.  Try to ignore the fact about your mom not being there.  It's just added stress that you don't need at this time.   You can deal with her and your  anger with her later.  
 
One more thing,  come here anytime to vent or when you need support.  This is a wonderful forum.  
 
I forgot........welcome to Healing  .
 
Take care.....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.

cavkid
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/27/2010 2:00 PM (GMT -7)   
Thanks to all of you for your thoughts and well wishes. I did ask my sister to come and help and she is here for a few weeks. Dad was released back home today and I'm glad but Mom called and started yelling at me like she has every right to come to my home any time she pleases because her husband is her and they need to be together. She does not have any ability to reason or feel empathy so arguing is a waste of precious energy. I offered to bring him home for a while and pick him up later, not good enough.
It all happened so fast that I just did the best I could but it seems like everyone is upset with me. No matter what I do someone is always unhappy.
Dad has been taking lactulose but he has a hard time keeping it down. They did give us some tips on helping him with that. He's also starting Xifaxan tomorrow. Has anyone had success with this?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/27/2010 2:29 PM (GMT -7)   

Hi, Cavkid.  You cannot please everyone.  You can only do what you think is best at the time.

Xifaxan is often given along with Lactulose.  It's an antibiotic that helps with GI symptoms and most patients do better when given Xifaxan and Lactulose rather than Lactulose alone.

I suggest you see if you can get some in-home nursing care.  You are going to need some help.  I'm glad to hear that your sister is helping out, but what happens when she leaves?  It's best to get a plan in place.  If the doctor thinks your dad has 6 mos. or less, he can be referred to Hospice.  They do send nurses to the home and also provide respite care for caregivers.

I agree that there is no point in arguing with your mom, just as there is no sense in arguing with someone who is drunk.  However, you do need to set some boundaries and have her abide by them.  Talk to your family about what you will and will not allow and stand firm.

Hugs,

Connie


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

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 8/27/2010 2:30 PM (GMT -7)   
Cavkid,
 
First of all, welcome to the forum. You will find alot of information here as well as alot of support from people that are going through this journey parallel to yours. I am so sorry your father has this dreaded disease. As a vet, he does deserve the utmost respect. As for your mother, she is not able to handle her feelings, taking care of him, etc. She has an addiction, and unfortunately, that is very self centered and self imposed.
 
With regard to the xifaxin, my husband has taken it, and yes, it is a wonderful medication to help with the ammonia levels. I think you will notice a huge difference! Is he taking it in combination with the lactulose?? I think you will find that he will tolerate the xifaxin much better. Unfortunately, lactulose has some unpleasant side effects. smhair
 
But, the xifaxin, since it is in pill form will make a huge difference!
 
I pray the best for you, and as others have said here. Please do take time to take care of you!!
 
Mer

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 8/27/2010 2:32 PM (GMT -7)   
I wanted also to add that the xifaxin is also a very expensive drug, and due to that insurance companies are reluctant to authorize it under their drug plans. So, be aware that you may possibly have to get the doctor to authorize it based on medical necessity.

Take care,
Mer

cavkid
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/28/2010 3:30 PM (GMT -7)   
He started the Xifaxin today and we started mixing the lactulose with juice. He was approved and has a 6 month refill which took 2 weeks to get and might have prevented the HE episode last week but at least he has it now.

The docs actually think he could live for many years but he needs to be able to keep the needs to keep the meds down to become strong enough for a transplant. I'm glad to say that he is doing pretty good today but my mom is coming over at his request. I dread seeing her but I refuse to engage her in any confrontation.

I'm really glad I found this forum. Everyone has been a big help. Thanks so much. Hope you and your loved ones are happy and healthy today. :)

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 8/28/2010 3:36 PM (GMT -7)   
Cavkid... good news.. glad to hear it... and I must broach this subject... it would be a good idea for someone in your family to attain power of attorney and write a medical directive...this will solve any problems or conflicts with your mom not really being able to make these types of decisions ... it appears.. just a thought..so glad to hear some good news...so glad to hear... take a deep breath... and go forward.. thoughts and prayers are with you.. Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/28/2010 3:50 PM (GMT -7)   

Cavkid, thanks for the update.  Glad he was able to obtain the Xifaxan.  Let's hope he can keep his meds down.  If it hasn't been prescribed, you might want to give him OTC Zantac or Tums, to be taken before he takes meds.  This will protect his stomach and perhaps also help him keep the meds down.

I do agree with Sandi about the Medical Advocacy and POA.  And with you about not getting caught up in an argument with your mom.  Don't get sucked in!  It will do absolutely no good for you or your dad.

Thoughts and prayers,

Connie


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