Memory Health: Alzheimer's Support Group
782 members348 posts

So, it’s official, now what

So, it’s official, now what

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.

Merry Christmas

Randy

Hey, I think I finally completed it!

5 Replies
oldestnewest

My heart understands Your post are really helping others

1 like
Reply

Thank you for posting, Randy. It must be so frustrating to lose what you were writing not once, but twice! Please know that your perseverance paid off.

What you shared makes perfect sense and touches my heart. My dad was diagnosed with dementia earlier this year. I appreciate what you share. They are huge insights into this terrible disease. It is a dark dance indeed. Please know you are providing great service to others. Thank you so much. I am continually amazed by the ways people on this site have opened up and bared their hearts and souls. You are giving us gold.

Blessings to you. Wishing you and yours a Merry Christmas!

Sue

2 likes
Reply

Hey Buddy, welcome to the ItsActuallyGoodToKnow club. I totally get your reaction, totally. You knew it was coming, you knew pretty much what it was going to be. Once it happens though, its like everything changes. Its almost liberating in a rather surreal way.

Now I am not as good a person as you when it comes to the try and try again stuff. Some might think its a bad attitude but I have definitely established my own F-I threshold. If I try to make coffee twice and screw it up twice, thats the end, I say F-I and move on with my day. I am not a quitter, no one who knows me would say that. I embrace the logic attributed to a smart dude names Albert Einstein who posited that anyone doing the same thing over and over and expecting a different result is the definition of madness. I can't speak to the madness aspect yet but the rest is very true, at least it was in my biz.

So to perservere past that, you are a knight among us naves sir. My F-I threshold is pretty unwaivering.....and I too experience the daily magic show that is LBD, in fact I had just lost a long email the night before, same way, just poofed. Draft was gone, the window was gone, etc. I need to go back to doing it the UNIX way because I am almost positive its my hands twitching on the mousepad. That had a F-I threshold of 1 and I immediately quit and opened a manga to look at.

2 likes
Reply

Your courage and perseverance are inspiring, Randy.

1 like
Reply

So...what's next for you young man? A trip to Disneyland?

Reply

You may also like...