Friday, June 5, 2015


A few weeks ago, in a time that will forever be known as Before ALZ, Sweetie and I decided once and for all (or 24 hours) that selling, downsizing and moving was the right thing to do. A realtor friend helped us find some comparable prices for our house and parted with these words. "I'll come back when you've de-cluttered." She might have said, "send me a picture from the top of Mt. Everest." Don't get me wrong, we're not hoarders, even though one of us does like to pack things into closets in a style closer to Fibber McGee than Martha Stewart, and one of us likes to stack up things up in Jenga-like fashion. Woe to the person who wants something on the bottom of the pile.  My father used to complain (what's new!) about the way I covered every flat surface in the house with stuff.  It used to be that my mind was organized, even if my living space wasn't. I don't think I can say that anymore. 

After the realtor left Sweetie and I went through the house like a tumbleweed in a tornado. We carried things to saw horse tables in the garage. We unloaded closets, drawers, kitchen cabinets and bookshelves. What didn't fit in the garage (the cars are now parked in the driveway) was temporarily stacked on the dining room table. We bought Garage Sale signs for a mega sale. 

Then, just as suddenly as it had come up, the winds of productivity died down came to a screeching halt. While the need for organizing, de-cluttering and moving became ever more important, our ability to think, let alone function, stopped. I am having trouble focusing on the next step. What comes first after the doctor says, Alzheimer's?

Cry. Shout. Stomp your feet. 
Cry. Shout. Stomp your feet.
Hold your partner
Do si do. **

Today, ten days after leaving the neurologist's office, I felt the slightest smidgen of forward movement. I ordered 4 books on the subject of ALZ. It's a law of nature, I believe, that when one clears a bookshelf, one feels an uncontrollable desire overwhelming need to buy more books, like washing your car is better than doing a rain dance.

I have to laugh at my own delusions of grandeur. Writing this blog is something I do for me. Yet in my secret thoughts (not so secret anymore!) I harbor the idea that my words will turn into a best seller. Fame and fortune could be a part of that dream. Mostly it's the idea of seeing MY book on a table in Barnes and Noble, or having Oprah interview me, or giving a TEDx talk. For someone who gets a stomach ache at the very mention of public speaking, these thoughts are obviously grandiose. For the most part I'm content with the process, not the end result.

Believe me when I tell you that any book I might write would get lost on I discovered today that there are over 180 books on the subject of ALZ and that's just in the "memoir" category. (I have to ask, with finding a publisher as hard as it is today, how have all these authors succeeded?) With titles like:
Alzheimer's for Dummies
Embracing the Moment
Help Me! I'm Slipping
Slow Dancing with a Stranger
Death in Slow Motion
We Keep Potato Chips in the Refrigerator
Finding Life in the Land of Alzheimer's Disease
Where Two Worlds Touch
One Thousand Joys and Ten Thousand Sorrows
Don't Leave Yet
I'm Still Here
Don't Bury Me It Ain't Over Yet
[and my two personal favorites]
Mothering Mother 
Where is Jack?
how can there possible be 165 more books for and about ALZ patients and caregivers, and who knows how many words written and published on the overall subject of Alzheimer's Disease? Who has time to write or read books on any subject when living with the disease? 

I watched Still Alice yesterday. My sister recommended both the movie and the book.  My gut reacted to the first half hour, my heart the rest of the movie. I don't know how accurate the movie portrayed someone slipping into oblivion. I realized that all I know at this point is that Sweetie will one day not know who I am. I'm sure there is a lot between now and then, I'll need to learn. I'll be honest, I can't wrap my head around Sweetie not being here even when he is, and when I feel overwhelmed, my go to defense is denial and lots of sleep. 

It might appear to be a baby step, but I feel like ordering 4 books on ALZ is heading in the right direction. I'll also go through the books on the dining room table and pull out the ones I thought I wouldn't need anymore. The ones on caregiving and grieving. I think that's enough pro-action for one day, don't you?

In the words of Charles Schneider, author of Don't Bury Me It Ain't Over Yet
"Being diagnosed with Alzheimer's Disease is not cause to immediately start digging your own grave."

Putting down the shovel and picking up my blankie,
Merry ME

PS. Many of the books on ALZ compare it in some way to dancing. Guess that's why I invented the ALZ square dance.

1 comment:

Elizabeth Marro said...

Thinking of you both, Mary.