It goes something like this:
Tuesday, November 16, 2010
Be assured and understand that the trial and proving of your faith bring out endurance and steadfastness and patience.
I have so much to write about and simply cannot find the time to get caught up. Bill's mother passed away October 13th, we have just come off a trip to visit his sister in Brunswick and there is tons to write about on the Alzheimer's front.
We are officially at the halfway mark in the UAB clinical trial on a new and upcoming Alzheimer's medication. WB was on hold since August as the last MRI was what alerted us to a sub-acute stroke. After much conversation, it was decided that he could continue with the trial, just without the infusions.
It goes something like this:
MRI, blood work (labs) and cognitive testing. Then, 6-7 weeks later, an infusion of either BAPPI or the placebo. The MRI is in place to test for brain swelling or side affects of the infusion. It is an 18 month trial and I felt sure that we had been fired.
Several weeks ago, the medical monitor allowed WB to continue with the study without the infusions until at least a reading of another MRI. We spent several hours last week in testing, both he and I. To be included in the trial, he must have a trial partner and it has to be the same person throughout.
His MRI was scheduled for today along with another MMSE. His last MMSE score was 13/30.
It was not a good day and I have myself to blame for most of it.
First, I foolishly made his appointment for 9:00 am. That is entirely too early for WB to get up, shower, have coffee, breakfast, dress, etc. and get in the car by 8:00. It takes us an hour to get there, park and get into their offices. We have learned, it is best to let him wake on his own.
Bill is broad shouldered and weights 254 pounds. The imaging machine they use for the study is not over-sized or open and has always been tight for him. Once before, I had slipped him a Xanax before we left the house to get him relaxed as he has had some anxiety in the past. I was scolded for this so this morning, I did not administer "mother's little helper".
Rain, rain and more rain. Parking was a challenge but we made it in without incident. Same place, same tech, same everything. Except today, he would not go in. One hour and a half later, Elvis left the building. Even after several attempts to make it better, after they had set me up with a chair beside the machine to hold his hand, after starting music, then a movie....it was simply not to be. He told me later that it really scared him and he would just rather not go back.
I believe he understands that this will most likely eliminate him from the trial. A trial that may have given him a chance at this medicine 3-5 years before it ever makes it to market. But, that could still be 12-14 months away from today. I am no longer confident that there would be any medicine available in that time frame that could reverse the damage.
From there we made a stop for a bill of groceries. We're having an Italian Feast this weekend with all the kids and grandies. It is only recently that Bill accompanies me to the store. He pushes the buggy and I usually park him at the end of an isle while I gather and then meet back up with him, then we move to the next isle. He and the buggy in the middle of the isle causes a lot of frustration for him, for me and for all the other shoppers. This just works best. However today, he would not stay at the end. If I got too far down the isle and he couldn't see me, he just struck off looking for me. Fear.
It was easy to detect on a short trip this weekend the shortening of his short-term memory.
Remarkably, my patience is at a place I never thought it would be. WB must have asked me every 15-20 miles on a 1250 mile trek what road we were on. I just answered. We intentionally left his cell phone at home so each and every time mine rang, he would ask, "where is my phone?" I just answered. These were not the only questions repeated.
Where is my wallet?
Have I eaten today?
Is Katie Doll going to be home when we get there?
Is Dalson still in the back seat?
How are we doing on gas?
He has no idea he's repeating, so I just answer. I no longer say, "Remember........". I just answer.
We are three years post diagnosis. We have survived the anger, the guilt, the psychosis, the depression and now we must survive the fear.
After relaying these events today with #1 son, I am reminded how thankful I am to have so many of us working in a concerted effort and in the same direction with the same goals.
One doctor says no sugar, another says adult day care, one says therapy, one says a sleep study, one friend says get him out more, another says I should get out more. It is nice to have all of this direction, but in the end we will do what works best for WB.
Yes, I will try and cut back on the refined sugar. There is no-sugar added Blue Bell in the freezer. We will continue to travel him as long as he's willing and will open our home to as many and as often as it presents. But therapy may be off the table.
At some point we must forgive ourselves and quit trying so hard to fix him. By we, I must mean me. I am the fixer, I can fix anything.
Most telling now is that his new amiable personalty is pleasant with a sweet spirit. We laugh out loud more today than I ever remember. He is needy. He is kind. He is scared.
Please be reminded, these excerpts are in no way intended to make a mockery of a very serious illness. We, as a family, never really knew what Alzheimer's Dementia looked like. My posts are to inform and share and it gives me great relief. I get to say it once here and we will always have something to look back on.
Not only is his life changing, but ours is as well. Things we thought were once important are now not worth a tinker's damn. Things we took for granted are now more precious than ever. He found a family who loves him and I have found something I never knew I had......patience.