Andy, I understand your frustration because I went through that with my mother regarding the chronic alcoholism. I am really in awe of the fact that you have stuck it out with your wife, as I just couldn't do it with my mother. There was too much anger and hurt. I cut off communication with her over 20 years prior to her death. I really could not believe that she lived so long, but she had to have sobered up at some point as she was living in a NH prior to being hospitalized. (I learned all this from her medical records, after her death.)
One thing my mother gave me was my own sobriety. I was traveling down the same road and when I realized I was becoming my mother, I joined AA. I was ready by that time, as drinking had ceased to be either fun or an escape.
I am sure there will be some lessons you will learn from all this. Nobody will think less of you for any thoughts you may have. They are normal.
You deserve to be happy. Please remember that.
I would like to suggest that Hospice be called in. They can be a great help to you, offering information and respite care, making sure that your wife is kept comfortable, etc. You can call them for info, but I believe a treating physician has to make the referral or confirm that she is end-stage.
Post Edited (hep93) : 11/1/2009 3:32:13 PM (GMT-7)
Charlie, it is "thrush." There is a liquid med referred to as Swish and Swallow, which will help clear this up. I've had thrush and it is very uncomfortable/painful. Makes it hard to eat. The antibiotic is Xifaxan. And it's true that antibiotics taken over a long period of time do cause thrush, which is actually a fungal infection.
My thoughts are with you all.
Charlie, good to hear that your wife isn't finding the thrush painful. For me, it was. I hope the pills work for her. I don't believe you can get the special mouthwash w/o a prescription.
I agree with the others that it is really necessary for caregivers to take breaks. In a lot of ways, this disease is worse on the caregivers than the patients.
When Janie woke up yesterday morning, the thrush had almost completely vanished. Unfortunately her energy level was also mostly depleted. She tried to stay up all day, but made most of the day napping in her recliner. I try to stay busy as I am so very fortunate to have an employer who permits me to work from home as much as I can. If I didn't have something else to keep my mind off of Janie and what the future holds for her, I don't know what I would do. Her oldest daughter, who teaches school in a city about 3 hrs from us, is going to visit her this weekend. She is planning to cook some of Janie's favorite dishes for us to freeze in hopes that she will try to eat more, as of lately she just has no appetite for any kind of food. Thanks again for all of your thoughts and prayers, as this is probably the most exhausting endeavor I have ever tried to do. Next month she will have to start having all of the medical tests done again so that she can remain on the transplant list. I really dread it, as last time it took three full days in a very rigid schedule of walking from building to building at a very large hospital for each test. I'm sure this year we will have to resort to a wheelchair, as I know she will not have the energy to do it on her own. I hope each of you have a good weekend.
Charlie, a wheelchair makes things much easier. I've had to resort to using one myself at times. Mayo provides these, as well as volunteers to push patients wherever they need or want to go, including the cafeteria. I'm very familiar with the long days of testing and they can be extremely tiring.
I'm glad to hear that Janie's daughter will be with you this weekend. Perhaps that will lift her spirits a bit, and she may even want to eat some of what her daughter cooks.
My thoughts will be with you.