Thursday, May 28, 2015

A New Threshold - The "A" Word

I went to google to find a quote to start off this post - Inspirational Alzheimer's quotes. I scrolled through a few pages of quotes about Alzheimer's Disease, but none of them felt inspirational. Seriously? I don't think Alheimer's Disease and Inspirational quite go together. Perhaps because I'm still a bit numb. My whole body is asleep, but that prickly, tingly burning feeling is rocketing around my nervous system like a pin ball on tilt. (I think that's a mixed metaphor but you get the picture, right?)

Alzheimer's Disease.
According to Alzheimer's.net :

1 in 9 Americans over 65 has Alzheimer's. 

On Tuesday we found out that my Sweetie is the one.

Alzheimer's Disease.
Like cancer, car accidents, rape, serial killers, or a bunch of other things, something that happens to other people, not you, or me, as the case may be. Only it does.

It wasn't a great surprise. Sweetie knew there's been something off for nearly a year. But the news sent shock waves through the small white doctor's office like we were ground zero for an A bomb test.

"The CT shows diminished volume in the frontal lobes …. consistent with the clinical assessment."

I quit listening soon after the doctor mentioned the "A" word. I stared at a poster with various pictures of colored brains on the wall across the room. Which illustration corresponded to what the doctor was saying? I don't know the difference between a frontal lobe and a cerebellum so I didn't really know where to look. A mute point because tears blocked my vision. At least I had someplace to focus other than my Sweetie. I didn't want him to see my tears.

I give the doctor (nurse practitioner, Debbie) credit. Her informative, yet gentle, demeanor helped pump air back into the room. She answered questions, offered suggestions, and, most important to me, took her time. We were not hurried out so another patient could be hurried in. For this I am grateful.

My good friend and mentor, Mtr. Judi Howell, offered this suggestion after hearing the news:
Look for God each and every day. He is there holding your hand each step of the way. You will recognize Him in places you never have before." 

Trust me, it is hard to find God, or gratitude, or blessings in a big pile of poo poo. Yet, as I write this, I realize that God was there in that room with us. Debbie didn't look like Della Reese in Touched by an Angel, but I think she was an angelic force for good nonetheless.

So what do you do when you are sucker punched with information like this. Standing are in arm, wiping each other's tears on each other's shirts, Sweetie remarked this feels just like grieving. Ahh, grieving. While I don't know diddly squat about Alzheimer's Disease, I'm familiar with grieving and caregiving. I'm sure I'll fall back on the lessons I've learned. I'm just as sure I will rage, scream, cry, stomp my foot, sleep too much, eat too much, pray too little, laugh some, make mistakes, ask questions ignore the answers, and fail to wear my own f*!king oxygen mask. On the other hand I will fall back into writing because writing is my go to place for self-care. I'm ashamed to admit it takes a crisis to get my muse jolted into action.

Sweetie is okay with me sharing his, mine and our story. If we can figure out how to do it, we may co-blog. This won't be the first, or last blog written by someone with Alzheimer's Disease or a caregiver. But I'll try to keep it honest. That's why we read blogs, isn't it? To find some kind of truth in a crazy mixed up world. Not that my truth has to be your truth. If you're a fan of roller coasters, or traveling down a similar road, please join us as we make this journey.

This song is running through my head. It feels appropriate.
Hello darkness, my old friend 
I've come to talk with you again 
Because a vision softly creeping 
Left its seeds while I was sleeping 
And the vision that was planted in my brain 
Still remains 
Within the sound of silence.
(Not so) Merry ME

The Sounds of Silence, Paul Simon 1964 

5 comments:

Debbie said...

I can only say I wish that these days were kind and gentle for both of you. The news received wasn't in your future plans nor is it kind or gentle. You are so lucky to have each other.

AkasaWolfSong said...

Mary and Jack...I'm just gobsmacked...not anywhere near your gobsmacked I know but. Well, the wind just blew out the sail...so! I am here for you, if you need anything! I mean that with my whole heart. All you have to do is just call me!
On a God note kind of thingy...this is not the end of joy with one another. Rush to make new memories and write everything down. Laugh till you pee your pants, and cry if you need to as well. Enjoy and envelope your embracing...and I'll hold the back of both of you. My deep, deep love to you Mary and Jack. xoxoxo

Pamela Jones said...

“There are too many books I haven't read, too many places I haven't seen, too many memories I haven't kept long enough.”
-- Irwin Shaw

Oh, Mary. I know it would be preaching to the choir to say that there are bonuses among the heartaches of aging and having memories slip away - we certainly had common experiences with our fathers that would attest to that. One thing I always thought was a bonus was the fact that as memory faded, each day was a brand new adventure. The same story that was fresh and exciting yesterday remained just as vivid today - the secret ingredient being the person who had enough love and patience to share the newness of something old again and again. You have done that before, and your heart is so big that you can do it again and find the sweetness of each new day you still have to share with the man you love - even when it seems vaguely (or not so vaguely) familiar. When we strip away our exterior, when we lose our sharpness of thinking, when we become someone we aren't sure we recognize, all that remains is the love. Hold onto the love. And remember you are never alone.
{{{{{MARY}}}}}

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terri st. cloud said...

i wanted to make sure i commented to jack....cause well......i just need you to know i'm out here, bud. holdin' you close.

MamaJoe said...

My sweet friend, I am praying for you and Sweetie!