Fair warning, this is my third attempt at this. Each of the 1st 2, when near complete, just disappeared into the netherworlds of the Internet. I don’t know what button I pushed that I shouldn’t have, what connection in my brain closed causing me to jettison my work, I just don’t know. But I do know I’m becoming incredibly frustrated and the words are coming much harder than normal. So, fair warning, what once made sense may now be a rambling mess.
Wednesday, I had my three month appointment with my neurologist. In the early spring of this year I was diagnosed with dementia but at that time they couldn’t definitely name it so my diagnosis was unspecified dementia or, possibly, mixed dementia. But, as of this appointment, based upon my current symptoms and their progression, I now have a valid diagnosis of Lewy Body dementia. Now, as I have been intimately involved in the care of family members with DLB for over twenty years, this did not surprise me. In fact, it is what I had expected from the beginning. But, honestly, what difference does giving this dark dance a definite name serve?
I assume that for many this would be particularly distressing news, but, for me, it was freeing, a relief in many ways. I can now give a definitive name to this monster that is forever in the pathways of my life, that’s tearing at the fabric of my family’s soul each and every day, that may well make our upcoming 40th anniversary one of our last milestone anniversaries, that in all likelihood will prevent me from attending my granddaughter’s college graduation and her subsequent life, as well well as all the other minutiae that makes up a quality life.
But, knowing an approximate expiration date so to speak, gives me the opportunity to reflect upon how I live the remainder of the life given to me. I better understand that I need to let those that I care about know how I feel, that I can’t assume there will always be time later. To let go of the animosity I feel for those who have supposedly aggrieved me, who has the precious time to waste on that. To live my remaining time in such a way that I will be a positive influence on my loved ones long after I’m gone rather than just a sad memory. To let my emotions flow, as they are now, as tears drip on the keyboard as I type this. Not out of sadness, but rather, because I realize I still have time to make a difference and make life full for the remainder of the time I have left.
No, not devastating at all. Liberating, saddening, coalescing, maddening, bonding: all of these and so much more.
Hey, I think I finally completed it!