Have you tried to make a change in your lifestyle to reduce pressure/ stress on you and the loved one/s who take care of you ? Have you made or are you thinking of making changes in your living arrangements in anticipation of your continuing decline? Any tips and encouragement, anecdotal stories are most appreciated.
I'm so sorry things are not going so well for you and your husband with his PSC. I know it can be discouraging to see the one you love failing in health. My dear wife watched my decline over the last 4 years as well, I know it was tiring for her as well, but please don't give up hope. There is always hope! Please continue to encourage him all you can to not give up. Does he have a treadmill or access to one? If so, please encourage him to get on it every day for at least 30 minutes. He's got to try and keep his strength up even as his health begins to fail. It will be so critical when the time comes for transplant that his core strength be as strong as possible so he can recover from the surgery. If he gets a transplant one day it will revolutionize his and your life. It made me feel 30 years younger after transplant. If there's anything I can do to even have a conversation over the phone with him I'm glad to help in any way. Please know that you and he will be in my thoughts and prayers.
PSC 2011 / Liver Transplant 7-2015
All the questions you ask are reasons why there is a special place in heaven for caregivers. I saw what my wife went through when I had colitis and my colonectomy. I saw the burden on her.
During my recovery, we learned that having our living area on one level( ranch-style house) was a blessing. So that is something I would recommend to those living in split-levels or vertical houses with 1-2 full sets of stairs. As health deteriorates, stairs will not be friendly.
I know, and my wife is beginning to understand, that life with psc will have a lot of peaks and valleys, and that things will get worse before it gets better. And there are no guarentees.