Thursday, August 10, 2017

Gummy, My Impatience, and The Beast Called Dementia


Dementia, Karfelt, Gummy, Nobody Told Me
S.R. Karfelt/The Glitter Globe


My husband spent this week in Asia.

I cleaned cupboards. And didn't see Gummy all week. I meant to.

Planned to.
Promised.
Didn't.

It hits me like that. A near paralyzing exhaustion.

A glance around my house can do it. It's still crammed with boxes and bags of Gummy's stuff.

Not that I can blame my lack of housekeeping entirely on anyone or anything else.

Somehow I find time to write novels.
And travel.
Blog.

There are nine suitcases in Gummy's room of my house.
Only one is hers.
Let's not bring up the other three in my bedroom.
Obviously we're not counting the one with my hubby in Taipei. 

The regular phone calls from Gummy's memory care, physical therapy, and guilt keep me still taking care of behind the scenes dementia business. Physical Therapy is new. It's to build strength because she keeps falling.

Lately she falls almost daily.
Out of bed.
Walking to the bathroom at night.
Most of the falls are more slides, down the wall, down the covers in bed to sit on the floor.
When the staff finds her and asks if she's hurt she likes to say, "Only my pride."

How can you not love this woman?

But how do we prevent it? Short of strapping her into a backpack I carry on my back, it's not entirely possible.

Believe me with each episode an entire team tries to trouble shoot the problem.

Oh, sure there are opinions and suggestions.

   Take her mattress off the frame.
   But then the bed's too low and she can't get up or down.
   And likely that will make her fall.
   Put up bed rails.
   She won't understand and will climb over them.
   And wind up falling that way. 
   Install a handle on the bed so she can pull herself up.
   We did. She never notices it, until you point it out and explain the purpose. And then she says,
     What? Nobody told me.

She needs a new chair in her room too. Hers is too low, though it's her favorite. She's stopped using it because she can't get in and out of it. Thus there's more bed sitting, and sliding out to the floor. 

The new chair is to be a Queen Anne style, higher, and with arm rests she can use to push herself up. It should recline if possible, but there can be no handles or buttons. It needs to be the kind you use your body to lean back in, or lean forward to bring it up.

The chair can't have buttons and handles to make it recline. Unless it comes with someone to explain them 24/7, they're new and will never be learned.

When I think about shopping for that chair I get a visual. That gets me cleaning another cupboard. In my mind's eye I can't even get Gummy across the parking lot and through the showroom to the chair section of the furniture store.

This can wait for my husband's return.

It's a practical thing. That's his jurisdiction. Gummy will zone out or wander around a furniture store. I don't see her providing useful feedback. She'll look at the prices and then for her purse, and stress. We do need to make sure it's her size, that she's comfortable in it, and observe whether or not it confuses her though.

The whole idea makes me remember taking my dog, the Golden Retriever that had daily seizures, to the Vet. Everything was a Hollywood production with him. Just getting him there, in my car without air-conditioning in the summer in Texas, was a script for black comedy. 

Once we got stuck behind a funeral for a busload of children who'd died in a horrific accident. It must have been 120° F in that car while we sat along the roadside for an hour. 

Not long after our wedding that dog came home tucked inside my husband's jacket. A most excellent surprise. I adored him for it, and the dog. My adoration might have leaned slightly in the dog's favor. He was smart and clever, but within months he began to have seizures, and every one destroyed a couple IQ points. 

I thought I'd have one with him while we sat on that dusty road.

It seemed a small thing while watching all those hearses pass by with tiny coffins inside. 

Personal pain shrinks when viewed from a global scale.

Perspective is invaluable. 

So I clean another closet. I'm ashamed of myself when I find paper products so old they crumble, or Sponge Bob party hats. My kids are out of college and onto their adult lives now.

Please understand I've been super busy the past fifteen years.

Running a business.
Writing those novels.
Traveling.
Combating chaos.

When I get to Gummy's old room of my house, I put good suitcases away, throw the broken ones away, and run to the store to return the brand new ones that broke on their first trip. Let me point out that Gummy's suitcase is from the 1950's and it still works perfectly. 

Once I've done everything else I can possibly do to avoid it, I stand starring at eight (8!) EIGHT cardboard boxes filled with photographs.

What the hell am I supposed to do with fifty years of Gummy's photos? 

The sight makes me glad my tens of thousands of photos are on my phone.

It's now been eight months since these have landed in my life, and I've been ignoring them. For months no one has been able to come stay at my house unless they know me well enough to understand why they have to sleep on the couch, and walk sideways to get around Gummy's things. 

Something needs to be done here.

But I don't know where to begin, and I don't know where to put them even after I've sorted them. 

I googled it.

What to do with old photographs?

The entire first page of hits were for Pinterest.

I'd rather self-tattoo them into my skin than Pinterest anything. 

While I was traveling earlier this summer, and wishing for time to stop so I could avoid reality longer, I came up with a plan. Every cupboard and closet in my house must be emptied. Everything but bare essentials must go. I will simplify my life. This includes my books. All of them. Well. Most of them. Okay. Many of them. Let's be real. Some.

Like cookbooks.

Who am I trying to kid there?

A day after my husband left, the dishwasher backed up and flooded part of the kitchen. I stood staring at that swamp in the morning. My life hack is not to dirty any more dishes. It's happened before so I know that Juan will engineer it in ten minutes. Sure I could call a plumber, but experience has taught me it'd be simpler and cheaper just to move instead of dealing with plumbing repairs.

That night I ordered a salad and Black Tie Mousse Cake from Olive Garden for takeaway. I ate it listening to music and sitting on the kitchen counter eyeballing the swamp until about midnight. Then I drained the swamp with a mop and a roll of paper towels.

After that I couldn't stop. I've gone cabinet to cabinet and room to room with my cleaning mission since. 

Today I'm finally in Gummy's room. Part of me wants to unload these pictures without looking. I know. That would be wrong. But I still haven't gotten over the boxes of effing teacups yet. 

Since I couldn't find a way to avoid this job, and believe me I've looked, today is the day. 

Let the sorting commence. 

We'll be sorting you all into different houses. (Mentally I'm approaching this like the first day of school at Hogwarts. Only instead of Gryffindor and Hufflepuff, they're going to other family members.)

If you're in the picture, it's yours.

Now that I've decided these aren't all staying at my house forever I'm prepared. 

Except with dementia you're never prepared. Sometimes you just like to think you are. In the boxes are hundreds of photographs of my kids, hundreds of Gummy's kids, hundreds of Gummy as a kid. I go slowly. These pictures are a tidal wave of memories of the things we've done with Gummy and Poppy. They're fill in the detail props of so many stories or events I'd only heard about.

Pictures from the scenes in the book I wrote about Gummy and me are here in living color.

If a picture is worth a thousand words, and I have all these thousands of pictures, I guess I'm rich.

The memories are priceless. I go slower than slow, stopping to snap photos of photos and send them to other people. I call other people to ask questions. 
   Is Gummy the tall one in the middle?



Yes! Gummy's in the middle!
I wouldn't be surprised if that dance costume is in her pile of clothes. She saved everything.


When we were moving around the country, I used to send photos to family. Gummy saved every one, and a good many of the envelopes they came in. Not to mention the negatives. Remember negatives? I'd forgotten them.

It's so easy to forget the past.

Cards and letters from my kids are in the boxes along with crafts and notes from all Gummy's and Poppy's grandchildren. It doesn't stop there. If you ever in the history of the world, sent them a photo of one of your kids, they kept it. All Christmas cards and school photos have been saved. 

Including one from a family I don't know that all wore antlers (as in real moose ones) in their Christmas picture. Dude. I saved that one.


This task has become surprisingly comforting. Mostly. Let us never speak of the box sprinkled with cat litter and the evidence of mice.

Yet I sorted it just the same. 

The photos moved through time. Poppy riding mules in Morocco. Standing on a tank. Marrying Gummy.



This kiss!

Then their parent's childhood photos.


This stuff is like hitting the writer lottery


What a testament to a wonderful life. I didn't cry once. How fortunate Gummy has been to have had all of this. She had enough, and she loved. That makes a happy life. 


Isn't Gummy's expression priceless?
BAM. She choose wisely!

To me Gummy figured out happiness a long time ago.

So I clean Gummy's room, making way for friends to come visit me again, making way for all the wonderful memories I can cram into my beautiful life—and I'm just glad, so effing glad I've known this woman and shared some of her wonderful life for a time. 

So when my daughter calls and says, "Hey, let's take Gummy out to dinner tonight." I say, "Sure. She'd like that." 

Gummy's not making memories anymore, but we are, and she's still part of ours.




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