Nikki,
Good you reposed.
Both Connie and A Ziffle are patients themselves, so can give perspective from that Poing of View.
I am a caregiver, like your Mom, and trust me, it was awful.
Re: Lactulose. It is a lifesaver all right. And if Dad gets really really high ammonia, he could slip into a coma and then the docs will get that evil liquid into him one way or the other. They use a nasal tube to get it into the stomach or will give it to him via enema. Seems like slugging it down with some apple juice or sprite would be better than the old hospital tricks!
It is the opposisite of the diet saying: 5 minutes on the lips, 5 years on the hips...in this case 5 seconds on the lips avoids hospital trips!!!!!!!
It is the xifaxan that saved me (or him really).
During one of his hospitalizations, the docs put him on xifaxan wth the lactulose and all of a sudden we were having logical conversations. that time it was mostly about
making plans for the worst...his funeral, whether he wanted to be cremated, when to tell the kids and grandkids, etc. He really thought he was on the way out.
It was the nicest things had been between us in months. They prescribed it when he left the hospital and than Medicaid deemed it not medically necessary and denied the claim. The co pay was $1300 a month. UGH.
I wrote to Medicaid. Told him End Stage Liver Disease with decompensated liver was a death sentence and that Mike was TERMINAL and that I thought it was outrageous to deny a dying man his meds. I asked if they were going to hold morphine from the troops in Afghanistan who were critically wounded becausse they were just going to die. He got his approval.
Mike was so ugly that I was almost frightened to be the driver. He screamed at me from the beginning to the end of every ride...too fast, too slow, didn't stop quickly enough, jerked on take off, didn't see the red truck, changed lanes too quickly/too slow. GASP. I was in tears often. There was no modifying his behavior. But it got much better on the xifaxan. One day we were driving and I stopped the car, in tears. It was almost Thanksgiving. I said that it was likely this was our last Thanksgiving, our last Christmas and was this how we were going to end a 31 year relationship? He never heard me talk. He screamed at me over my tears.
Interestingly enough, the day he woke up from his transplant surgery he started making sense. AND he has amnesia about
the year before the transplant. Though I remember every hateful word, he does not. I wish someone had told me this enough times for me to catch on. He was not himself. So sad.
I found a good therapist and talked to her about
how I felt about
his dying, being so sick, and we talked about
what HE was going through also. I got some good techniques for disengaging and taking care of myself.
And that is key for your Mom. Can you give her some relief time....let her get her toes done? Hair cut. Go shopping. Are you close enough?
My best to your family. This is going to be a rocky ride.
Carol
Post Edited (MamaLama) : 4/19/2012 10:12:38 AM (GMT-6)