Post Edited (Lost_in_Maine) : 1/1/2007 3:07:05 PM (GMT-7)
Hi lost in Maine, welcome to HW. Sorry to hear about your wife. My husband has encephalopathy, pretty bad at times too! He is taking lactulose and also on xifaxan for it. When his gets bad it is usually from an infection. Does your wife have a hepatologist following her? My husband was just released from the hospital on Saturday, he visits it frequently! I am not sure when the chat times are for this forum. I usually don't use the chats. Have you or are you considering treatment for the Hepc? Just keep coming back as there are others here on the forum with the same problems we face.
Doug, I really feel for you, I have been through that quite a few times myself!!! I don't blame you for wanting or doing the court order deal!! Especially since she is being non-compliant with her treatment! There is usually no one that understands what we are really going through for hours and even days when they are like this. It drives me crazy too! Does she have a chronic infection, maybe? After several episodes of this with my husband they found he has a chronic infection of the prostate, so now he is on a long round of antibiotics (levaquin) again. He is acting normal for now. The thing is they cannot be left alone when this is going on and they will not take their medicine when they are like this. My husband takes his medicine without a problem when he is himself. Electrolytes being outta balance can also cause these episodes. My husband has also had the renal problems like your wife, they had to find the right diuretic combination that was easier on his kidney's and he still had problems with ascites. They did a TIPS procedure, which at first did not take fluid off, the fluid actually increased. It did finally start working and he has lost 49 lbs. of fluid in less than a month. He went into a tailspin with this, but they found the infection was the culprit of the encephalopathy. Bleeding varices can also cause them to have the encephalopathy, he does not have problems with varices. I don't know if I am helping you any but I really do know what you are going through, it is very exhausting and emotionally hard. This last time I was talking about sending him into respite care, his doctor really didn't want this as he would be around too many germs in the facility and he is up for the transplant at anytime now. How long have you been going through this, and is there anyone that can help you get a break from this? Good Luck with this, I will be looking for you. Oh yeah, they have a new drug that should be coming out pretty soon for non-responders on the HCV, it is suppose to be easier on the body, it is still in the trial phases, but looks very promising.
As others have said, I am very sorry for what you are going through. I have been a caregiver to my husband, who has alcoholic cirrohsis, since late August. It is a living hell.
You are right about nights being worse, but I don't know if it's them or us. I have far less patience when I am being awoken every hour at night for toileting, confusion, general conversation, the room's too hot or too cold, whatever. Whenever the same behavior presents itself during the day, I have much more patience.
You need help. If you don't have power of attorney, then a court ordered intervention sounds right. If you are low income or a veteran, you may be able to get gratis legal help from the state or federal governments, or from a local law firm that does pro bono work. The legal firm might also be able to pro bono assistance in getting your wife signed up for social security disability, if she qualifies, although that can be a tough row to hoe.
Have you thought about Hospice? They will provide help for end-stage liver disease even if you cannot afford to pay. If you belong to a church, you may be able to get volunteer and respite care from church members. Is your wife on Medicare? After 3 days in an acute care facility, she should qualify for home health care or a skilled nursing facility. Talk to her discharge social worker at the hospital she was in to see what sorts of resources they can send you to.
Sometimes other caregivers can get further with a patient (in terms of calming them and getting them to take meds) than can a spouse.
Do you belong to any social clubs or civic organizations that will "grant" you money to hire a private duty caregiver a couple nights a week?
Don't be afraid to ask around for help. People want to help when they know there is distress, expecially extreme distress such as yours.
Neighbors? Friends? Family? Even if it is only to bring in meals. She needs a low-sodium, low-protein diet, and maybe those persons can't cook to those specifications, but at the least, you need to stay as healthy as you can to care for her. You can likely talk with a nutritionist at the hospital she was in about her dietary restrictions.
Talk to her doctors. Let them know how bad the mental confusion is. They may be able to adjust her meds, or like a social worker, send you to resources to help.
I don't want to make this all about her, because I can tell how much you also are suffering. I know I've outlined a number of steps that will be exhausting to pursue, but in the long run, they may help you (personally) alot. My thoughts are with you. Take care.