Posted 12/12/2014 3:38 PM (GMT 0)
Last night our NFL home team won a hard fought football game! This morning I am flooded with memories as a result of that win. Football has taken on a new meaning in our lives, because that is one thing we can share this year, enjoy, look forward to, and celebrate.
Last year was the most difficult December of my life. I know now how paralyzed with depression I was. I knew then, but felt it more of loss and overwhelming sadness.
I thought it would be themister's last holiday season. And I was determined to make that Christmas happen for him! We have no family near us, no social group, no friends in AZ. Because he needed a transplant and the state we lived in had no transplant center.
Six months prior while themister was plagued with HE... we moved 1,000 miles to be near Mayo Clinic in AZ for his transplant journey. We moved from our lovely home on acres of horse property into a rental I found on the internet.
Saving his life at whatever cost was the goal...my goal. That was May 2013.
I knew we had to sell that big home themister built us in 2009 in order to live where he could have decent medical care. We downsized to buy a small fixer upper in a good neighborhood in AZ. Themister broke his shoulder in a fall, right after moving into the rental. The next month I found us a fixer upper and hired movers again. Thinking he would get a transplant soon...it was important to make all things stable and permanent. I was tired...tired beyond words tired. And so lonely. The HE robbed me of my husband and I deeply missed him. But he could not help with any of this, and it wasn't his fault.
So by December last year, themister was either asleep, or deep into HE behavior. I was having to help him with every task of living life while he slept or acted like a toddler, or a belligerent teen. And that IS NOT my husband. I struggle to hate the disease and not confuse IT for him.
And now to that football game last night and last year....
Themister had no idea what football game was on last December. If you know him, you know this is as bad as it gets. He thought every game would be the Patriots and the Bronco's and could not stay awake to know the difference.
His mind was "stuck". I no longer could take him to the market because he stopped getting dressed and was in bed so much that dressing seemed not to matter. He had no concept of what day of the week or what year we were in. Themister could not turn on a computer work a phone, nor understand a remote. He needed help to roll over and get up.
I bought him Christmas presents to me from him, to him from me, and put up a tree. I was determined to make that Christmas memorable, even if he only saw the lights. Christmas came and went with him sleeping through it, other than to eat some of the holiday meal and open the gifts. He had no idea he had not bought me a gift. He really was not "present", simply going through the motions I was guiding him through.
My world had become smaller and smaller as I was now terrified to leave him alone for one hour to get food for the week.
I realize today how little I knew about HE, ESLD, a failing liver...and how totally unprepared I was to take on all that brought with it. We thought we were ready to face a transplant.... or his end of life. But nothing...NOTHING, prepared us for ESLD lasting years. No doctor nor professional ever hinted at what was to become our new normal.
So here we are...a year later and another football season. Another holiday season. And this month themister knows what team plays and knows the stats. He ordered gifts online and has them under our little tree. Every day is not great. Every month is up and down. Life is tough when fighting for it. We still spend too many hours alone with each other...waiting for him to getting sick enough for a transplant, but not too sick to survive it.
But today we have hope. And football!
Big Hugs