Good afternoon HVNSD,
I thought I try to respond to "how did you take care of yourself before Mike's transplant" question.
It was tough. I was a MESS. Very upset, frantic, uninformed, certain he would die. I cried all the time, worried, and wasn't sleeping well. I was angry at Mike for doing this to us on purpose... And I gained a bunch more weight.
I finally went to a counselor to talk, to a psychiatrist to get some meds, and joined this forum to vent. And I made some changes...
His daughter came very couple of months and I took a few days OFF. That helped. I was even away the day he "got the call!" And had to zoom back to FL from SC while she took him to the center.
I took the anxiety pills which allowed me to calm down. I had been interacting with him...he would do or say something outrageous and I would fuss back at him...argue with him, cry, shout, complain to others.
And then I realized...he wasn't doing things on purpose, he was sick. Really sick, "maybe-he-might-die" sick. And I stopped fussing back. There is no convincing a drunk man or a person with ESLD mid HE episode to do ANYTHING a different way..."perhaps, please..."...nope they don't work, not a chance...those with ESLD don't negotiate or solve problems well.
And I tried to keep up with my regular life. I was on 2 community boards (one big one--5000 residents); I am writing a book; I take a writing class with lots of homework; I do a graphic arts stuff for newsletters and web sites; I write press releases; I have a large family and zoom off to take care of grandkids as needed; I read like someone possessed and facilitate a book club; I handle my sisters affairs (who has dementia) and I handle Mike's affairs -- going to all their med appointments; I do the cleaning, errands, shopping, cooking, laundry, replacing the air conditioning filters....a busy retired life. I tried to get a mammogram and have my teeth cleaned once in a while...get a hair cut...forget a pedicure!
But, I had to pull back, almost all the way back. Because with ESLD you never know from one minute to the next what is going to happen. He was hospitalized a week a month for almost a year. He went to AA 4 or 5 times a week and did not drive for a long long time (too confused and crazy).
When I didn't feel angry because I had to miss a meeting, or have to stay up until 3 AM to meet a deadline, or be stuck between two equally important priorities, I calmed down.
I hated to give up my "life." So I kept only those things I could do at home, on my own time line...the graphics and newsletter type stuff. I gave up the big board but kept the newsletter on the small board. And I stopped writing on my book.
I got some books on CD and listened in the car as I drove to and fro to those AA meetings and sat in the car while he was in there, because he was so dazed and tippy who knew if he'd fall down or poo his pants? The AA guys were great, became friendly with me in the parking lot, and would take me aside and make sure he was ok. When he got the transplant one of them called every day to make sure he was still with us!
I think of this as MY AA time. I surrendered to MY HIGHER POWER and let what was happening be in the moment. I had no control over Mike having Hep C or the course of the disease. It was consuming both of us and we needed me to be okay.
With the Xifaxan the last 6 months before transplant and the resulting decrease in HE, him sober and with me going to the counselor (and taking my "don't be mean to Mike" pills), things settled down even more.
I became his advocate rather than his adversary. I got better at making meals he would tolerate and let him sleep/wake as he needed. I stopped fussing but took over more and more of the pill management, etc. He hated being disabled like he was. He didn't near to hear my angst also. We had only so much time and I learned not to make it worse by being frustrated, angry, and a bit**.
And get this...when he did have the transplant, turns out he does not remember most of what happened for the last year before hand. Amnesia! People came to visit and "say goodbye" because we did not he'd make it there for a while. They came from California, Utah, Connecticut, NY...and he has no memory of those visits. People stayed overnight, helped me out. NOTHING. He says I make that part up.
I treated him more like a sick person in a nursing home than a partner after a while. It was easier for me and easier for him I think. And some of the intimacy of our former life is gone forever. Sad. But he is here with me and doing pretty well.
Even now though, I see a hint of the ESLD Mike...grumpy and unreasonable. And I fear what may lie ahead...another round of ESLD if they can't get the Hep C treated somehow.
Day by day, my friend, day by day.
Rule #1, get a pedicure after all...yukky toes makes a girl feel yukky. Carol
Forum moderator - Hepatitis
Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL