After reading your posts regarding your husband, I felt compelled to respond. My husband has a serious heart condition. He had a defibrillator implanted several years ago. Initially he was angry, bitter and often depressed. In addition, he was very scared. Later he confided that he couldn't understand how this could've happen to him, he felt so invincible, so strong. He wasn't always able to express these feelings. Initially he was too overwhelmed to express his feelings effectively. It took several years before he was able to express his deeper thoughts & fears. I think he had to get past the immediate fear of death and pending doom, before he could share these deeper feelings. It was a long and difficult road. There were many times that he didn't want to go on with life. Even today he still worries and gets depressed. There are times he feels tired, or has a headache, and will immediately attribute these things to his condition getting worse. I make every effort to keep him focused on the positive things of daily life or at the very least, I try to keep his mind off of the current concern/symptom. I can't tell you how many times he felt certain that his condition was declining, then would visit his doctor to learn that his condition was stable and his mood would improve significantly and he would feel better physically too.
Certainly a considerable amount of our ability to confront his fears and concerns comes from the experience of having survived numerous, very trying (heart attacks) moments. Each time we overcame a crisis he found a bit of inner peace.
You've indicated that your husband continues to decline, despite trying numerous therapies. First, I want to tell you that I know a woman with MS - diagnosed just six months before me who declined rapidly, experiencing nearly every symptom attributed to MS. She was hospitalized several times. She was confined to a wheel chair for several months. She was extremely depressed, tried the CRABs and LDN too - nothing seemed to help. She's doing fine now. She walks fine and has only minimal residual symptoms. She's not cured. She did not try the abx regimen. The point being that your husband's decline does not necessarily mean a continued downward spiral.
I think most importantly at this critical stage, your husband needs to have some hope. Do you have the support you need to cope with his condition? I strongly urge you to build a support network of your own to cope. I disagree that this his journey alone. It is clearly affecting your life too. It seems that you're both reaching desperately for that improvement or cure to the extent of overlooking your emotional needs. Definitely prepare and commit to the long haul, but then focus on one day at a time, or an hour at a time if that's what it takes.
There's a book entitled, The Anatomy of Hope, How People Prevail In The Face Of Illness, by Jerome Groopman, MD. I highly recommend this book to both of you. I think at the very least you will find it inspiring.
Every morning I awaken torn between the desire to save the world and the inclination to savor it.
- E.B. White