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Update on what should I do and a Lactulose question

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Posted 9/4/2009 1:08 PM (GMT 0)
I posted about a month ago asking what I could do to make my mom seek help.  As an update, I finally got her into the hospital.  They drained 3.3 liters of fluid from her stomach, did the endoscopes and closed up one bleeding vessel in her stomach.  The dr said I won't have to worry about her varices rupturing because she doesn't have "those kind of veins" 

When I first got her to the hospital, she was able to live alone, now I have had to move in with her.  She is only awake a total of an hour a day.  Drinks very little, eats even less.  She can't get up by herself, can't walk more than a few feet.  I'm having a difficult time getting her to take her medication.  Every time she drinks, she starts coughing.  There have been times when I thought she wouldn't make it through the day.  She is 5'3" weighs 115lbs with a 41" waist.  I measure her stomach daily to determine if the fluids are building and how fast. 

She refuses to make a will or give me any advice on how she would like things handled.   I thought the dr would have ordered hospice for some help after this last visit, but he didn't.  He is moving offices and he didn't have any of her test or lab results in her folder.  He simply prescribed the lactulose and scheduled a 6 week follow up visit.

My mom just had her first dose of lactulose yesterday.  She is on 3 tablespoons twice a day.  She only took about half a dose, (I mixed it in her orange juice).  Her amonia smell was so strong, if was difficult to be near her.  To me it smells more like nail polish remover.

Mom had several bowel movements yesterday that she was unable to control.  I'm on my third load of laundry now.  I know the lactulose is to make her have bowel movements, but is it so powerful that she doesn't know its coming?  Or is the loss of control another stage in the dying process? 

Thanks

 

Posted 9/4/2009 1:17 PM (GMT 0)
Welcome to the world of lactulose! My mom could not feel it coming either. We used breifs and lined the bed when she was at home, and my mom had to take it every three hours, no matter the number of bowle movements. The problem is that when it works, it can make the person very dehydrated, which can also cause confusion, so it a very difficult balance. In my mom's case, it was the medication, not sure if anyone else has seen it as part of the dying process. There are some other medications that can help keep down the amonia that does not have the same effect as lactulose as far as bowle movements, but keeps the levels down - remoxifin is one name. I would ask!
Posted 9/4/2009 1:40 PM (GMT 0)
Trying......yes the lactulose definitely can cause that problem. My husband has had that issue. It is tough to balance the dosage because you don't want the extreme end of it like you mother is having. You may want to try to just decrease the dosage a bit...down to 2 TBSP 2 times a day and see if that works....of course, talk w/ the doctor first. Depending on his confusion level, I have had to increase and decrease to keep the balance, if you know what I mean. My husband has most recently been put on Xifaxin, which is an antibiotic drug to help with his ammonia level due to the fact that the lactulose was causing problems with his body absorbing the anti-seizure medication he's on. But, the first thing you may want to do is talk w/ the doctor about adjusting the dosage on the lactulose. It is tricky getting that "right" dosage.....and, then if it seems to still be causing too many problems, then I would ask them about the Xifaxin. I can tell you that it is a very expensive medication and I don't know what kind of insurance you have, so thought I would throw that out there. Hope this helps....hang in there!
Posted 9/4/2009 11:45 PM (GMT 0)
Trying2Help. I know what you are going through as so many of us here know. It can be a real challenge. First, I would get her some adult diapers. That really helped in my case with my mom. She lost total control eventually of her bowels and bladder. Like so many others here we had to adjust the dose too. I am a bit concerned with her sleeping so much and not eating. This is usually indicative of the encephalopathy. I think you need to call the doctor and have him call you back, Descibe her symptoms in detail to him. Then ask for hospice. He can order it immediately. I think it does help to tell the doctor that you are overwhelmed and she needs around the clock care and you just can't do it. Unfortunately, it is a holiday weekend and you may not get much help from him until Tuesday. When my mom was losing ground with this disease she slept about 14 hours a day and while awake she was confused. She would remove her clothing and wonder around the house. She wouldn't eat and barely drank any liquids. She cried alot and started really complaining of pain. The confusion for us and the pain she suffered was the worst for us as caregivers. They did put my mom on megace to increase her appetite. She did eat more for awhile but the disease was so advanced that she finally entered hospice and we lost her 5 days later. There is only so much that one person can do so don't punish yourself no matter what happens. You are doing all you can.
Posted 9/5/2009 12:02 AM (GMT 0)
I did get her some diapers today.  It has helped, I have not given her the lactulose today.  The Dr said he wanted her to have 2 bowel movements a day.  She had 4 yesterday and 2 today with the half dose she took.  She has not eaten again today and has only drank a few ounces of orange juice and a few ounces of water.  I'm afraid of giving her more lactulose if she isn't eating or drinking. 

I'm torn between forcing her to take the medicines or letting her die.  My mother has no will to live, I really hate being in this position.  When we first got home from the hospital, she hid a tuperware container of salt in her pillow case and I caught her drunk off of mouthwash another night.  I removed alcohol but mouthwash never entered my mind.

I did call the Dr today because they never faxed over the insurance forms but they were already closed for the weekend.  I did explain to the Dr the amount she drank, ate and the color of her urine, diameter of her stomach and the amount of time she spent sleeping.  I was amazed with the schedule of more blood tests in another city and a follow up visit of 6 weeks.  I don't know why I got so tongue tied this time.  After our last visit he said she had a decompensated liver and that she was at the bottom of the slope on the downhill side with her disease and we needed to decide if she wanted aggressive treatment or comfort care.  My mom said she just wanted to be made comfortable.  Oh the guilt!!!! and depression

At her current state I don't see her making it 6 weeks maybe he sees something I don't.

Posted 9/5/2009 12:28 AM (GMT 0)
Trying2 help the comfort care that the doctor had mentioned is probably hospice. But he probably didn't want to say the word. Some people take it poorly, knowing that there's not much else to do than make the patient comfortable. So if you want hospice called in you are going to have to tell the doctor.

My husband's doctor did tell me it was probably time for hospice...but it was my decision. It was the hardest decision that I had ever made for him and my brother a few weeks ago also. But if there is no hope of surviving with any kind of quality of life........then the next best thing is to try to make them as comfortable as possible.

Thoughts and prayers............
Posted 9/5/2009 2:27 PM (GMT 0)
Trying2Help, I am so sorry that your mom is slipping away from you. I know that you are feeling frustrated and guilty. I can only tell you that the guilt is wasted energy on your part. I too felt guilty and that I should have been doing more for my mom. The truth is there is nothing else I could have done. My guilt was overwhelming and if it had not been for Pink Grandma and Hep93 and others on this site I would have had to have professional help for my depression and guilt feelings. I think that we all feel the same way when we have to endure the ravages of this disease on our loved ones. What you are feeling is completely normal. Once I realized that I was doing all I could I somehow started to overcome my guilt. The grief is still there but even that lessens with time. PG is right, call the doctor Tuesday and tell him you want hospice. We opted to send my mom to a hospice facility because it was just too much watching her 24 hours a day. They were so wonderful to her and kept her pain free. It was the biggest blessing we could have had. It was really hard to deal with the conflicting emotions that we all had but it was the best thing we could have done for her. We are here for you. It will help to come on the site and vent believe me. The concern and compassion of those on this site has been what motivated me to continue posting 2 years after we lost my mom.
Posted 9/5/2009 9:45 PM (GMT 0)

Trying to help, please do ask for Hospice.  It will be a big help to both you and your mom.  The doctor has to order it.

Hugs,

Connie

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