Thursday, July 27, 2017

The Day Gummy Forgot How to Walk—Dementia, Alzheimer's, and Reality


dementia, Alzheimers, memory loss, memory care
The Glitter Globe/S.R. Karfelt.com


Maybe that's not what happened. Maybe Gummy didn't forget how to walk. You never really know with dementia. Maybe the EMT and the Emergency Room doctor are wrong. You tell yourself that sometimes.

It's been a good week. It's been a fun week. My house is in utter chaos, but that is what houses are like if you are gone often, and you love to do things that there really isn't time for, and you love someone with dementia. Real life is messy, isn't it?

My suitcases are unpacked. My bills are paid. That's good enough. So I dragged Gummy out of memory care to play instead of cleaning. That's how I roll. That's why there is a load of laundry in the machine that's now been washed again three times. It's still not in the dryer. Maybe tomorrow.

Memory care at assisted living is having summer concerts every week. Gummy is a sundowner. That means her memory problem is much worse as the day goes on. That means when the aides try to get her to go outside to a concert, Bingo, or any activity, she's definitely going to tell them no later in the day. 

Sundowning makes Gummy notoriously uncooperative.

Not that she ever was or is cooperative.

When you take a good look at this disease, it's often tough to know where the person ends and disease begins. 

Sometimes I can talk her into stuff. I'm as stubborn as Gummy.

When I get to her room I hear her, "Can somebody help me? Please?" She says it ever so politely, lying in her bed at an awkward angle, as though her spine were curled into a C-shape, flat on her back with her head and hips near the edge, and her torso nearer the far side of the bed.

          What's up, Gummy? What do you need?
          I'm stuck.
          Give me your hands.
          Ouch! ow, ow, ow.
She fusses as I attempt to scoot her straight. So I slowly sit her up, nab her slip-on shoes and jam them onto her feet, and get her to stand.
          Can you do it? Are you okay?
          I have a headache and my back hurts.
          Do you hear that music? There's a party outside.
          What? Who's having a party? 
          Everyone else. Wanna go out there? It's beautiful outside. You don't want to stay in here all day. It gets depressing. It's summer out there.

She goes. Not that I'd have taken no for an answer. I've not given up. Gummy vanishes sometimes, but not always. My goal is to get her to talk, or make her laugh, or just spot her inside the chaos of memory loss.

It takes quite some time to get her downstairs and out the door. It's hard to see her moving so slowly. Last year, when I Gummy-napped her, and Juan and I brought her here to the shire with us, only her memory was poor. Her fitness level was fabulous. She'd dart up and down the stairs and grow impatient and bored with the slowness of memory care. She had places to go and things to do and what the heck was she doing there?

Now she fits right in. Now she's one of the slowest. 

But we still take her out. The entire family does. Her original self is still burned into our hearts, and we all know how much she loves to play.

That's why I drag her down to the gazebo where the band plays, and into a chair. She eats a hot dog, swats gnats, and listens to the music. Several people from her memory care unit are there. Some snap their fingers in time to the music. At least one dances his heart out, never missing a step. Memory loss is odd. Dementia/Alzheimer's doesn't seem to affect everyone's dancing or singing. 

They're all different though. They're all affected in unique ways. But they're all still people, and they're all still alive is the important part.

The headache and back pain seem to vanish. Gummy has fun. That kind of music was before her time, she tells me. But she likes watching young girls from a softball team hop onto the dance floor to dance with each other or the seniors. Juan arrives and she responds appropriately. She is enjoying herself. After the music stops we sit there, swatting gnats, occasionally singing a bit of a song, not ready for it to be over. 

Most of the residents go back to their rooms and the band packs up. Juan has an after hours meeting and eventually leaves. I prompt Gummy to stand.

          I can't.
          What do you mean? Do you hurt?
          No. I can't. 
I move chairs around, give her the back of one to hold onto and haul herself up.
          Nope. My legs won't do it.
Going behind her, I simply wrap my arms around her torso and haul her up to stand.

It takes a moment or two, but she takes little shuffling steps across the grass, across the parking lot, through the doorway, and down a hallway. Her legs buckle. I catch her, balance her, and we continue. It takes a long time to make any progress. 

The family member of another resident spots us and comes to help. With assistance we made it to the elevator. Then we face another long hallway. I hold Gummy's arm. When her legs buckle, I lift her and we continue.

          Do you hurt, Gummy?
          No. I feel fine. My legs won't listen.
          Can you smile?
She grimaces at me, sticks her tongue out and laughs. She looks fine. She's still happy. We talk about music, and how Poppy used to like to dance. In fact, her memory seems better than usual. Not entirely mind you. She thinks Poppy is still alive, and wonders where he is. She doesn't know where she is, but she remembers we were just listening to music. She remembers it's summer outside. That's more than she's been able to do in some time.

We get back to her unit and an aide meets us at the door. She doesn't like this. Gummy normally storms up and down the hallway for hours a day, packing to go home. Something is off.

          Gummy needs to go to the hospital.
          Yes. I was thinking the same thing.

Gummy doesn't think so, especially not in an ambulance. That's another oddity. Usually she's not aware of other conversations much. Not anymore. I suspect it's difficult enough to follow a conversation directed at her. When I talk to the staff, her attention seems to drift away. Normally (the new demented normal) she wouldn't follow that she's going to the hospital. She's following. An aide has to point out that ambulance drivers are often good-looking men. 

This fact garners Gummy's cooperation. 

          If you play your cards right, Gummy, maybe you can get some mouth-to-mouth.
          I want to see him first.

She passes the little stroke test that the paramedics give her at the scene. They wheel her out of her room and I gather her shoes and a lightweight jacket, suspecting she'll be coming home tonight. That's the way it's worked the last few times she's had to go to the hospital. One of the paramedics questions me.

          It doesn't seem like a stroke. Does she have sundowners?
          Yes. It's awful.
          Sometimes they forget how to walk.
          Wait. That's a thing?
          Oh, yes.

The ambulance is still parked outside the door as I leave. I peek through the window and see Gummy inside. She's smiling in a way usually reserved for grandchildren. She's such a flirt. Just because people get old or sick doesn't mean they're not interested in the opposite sex. That shit is hardwired into our biology right down to the basest cells. I watch her for a moment, tempted to pull my phone out and snap a photo. It seems inappropriate. Dementia is making it more and more difficult to determine what is appropriate.

If I'd known about forgetting to walk, I might have tried to dissuade the whole ambulance thing. Being unable to walk is a huge thing to me. But I've seen stroke victims. Gummy's having a good time. That's not usually how that problem goes down. I'm now doubtful she's had one.

Gummy sees me watching through the window. She winks.

The woman WINKS at me. 

You can judge me all you want, but I stop at Target as I'd planned and grab a loaf of bread. I've done this hospital run a few times now. Usually I beat the ambulance to the ER. Then I have to wait until she gets a room and gets situated. After Target I go home and get my husband. I wait for his conference calls to end and make myself a piece of toast. I gather Gummy's paperwork, my notebooks and pencils, and then Juan and I go to the hospital together.

Gummy's in a room, lying in bed, bored. 

          How'd you guys know I was here?
          We're your emergency contacts. They called us.
          But how'd you get here so fast? You could have waited until tomorrow morning.
          When your Gummy is in the hospital, you don't wait.
          I'm serious. How'd you get here so fast?

These questions are repeated in a loop for the next three or four hours. Gummy thinks she's in her hometown. She knows we live somewhere else. We don't argue semantics anymore. It just stresses her out. She gets to decide where we are and the whole scenario now. Sometimes we slip up. Reality is ingrained in us. In the end we simply try to follow her lead. It's working much better than trying to drag her into the real world. She doesn't fit there anymore.

After an EKG, CT scan of her head, and blood work, two male nurses show up to see if they can help Gummy walk. Miracle of miracles, she swings her legs off the side of the bed. They put her shoes on her feet as though she's Cinderella and they're the Princes. She's smiling. They help her down and she trots around the hospital between the two of them.

The emergency room doctor tells us she forgot how to walk. It is a thing. It's a precursor to all the other things that dementia and Alzheimer's eventually make their victims forget. Eating. Breathing. We knew this. I guess we thought it'd be different. I guess we never thought she'd be jamming to music, chowing down a hot dog, making naughty jokes, and suddenly not remember how to walk. 

Once more our reality adjusts to match this unreal disease. 

Okay, here's another helping of awful. Get used to the way it tastes.

At least the problem didn't stay. Not today anyway. This is how it always is with Gummy. She might be chatting with no idea who I am to the point that she denies knowing me, and in her next sentence she'll announce something like, "This is my daughter-in-law, have you met her?" She might say it to my daughter, or my husband (her son), or she's even been known to add something inappropriate like, "She's a—slut," to which I like to add, "That's why your son married me. I'm just like his mother."

Gummy gets that jab by the way. It makes her belly laugh.

It's a questionably polite way of reminding her I'm married to her son.

It's also a satisfying way of saying, it takes one to know one.


Gummy walks right out of the hospital. Normal walking, not the little shuffling walk. The ambulance would take her back, but there is no need. We tuck her into the passenger side of Juan's car, and she enjoys her ride back home to memory care in a standard vehicle with a hemi engine and old rock music playing. The kind she likes. At 2:00 a.m.

Leaving memory care in an ambulance, and cruising back there a few hours later in a little sports car ripping through gears is weirdly ironic to me, and I'm a freaking fiction writer. A non-slutty one. Of course that's what I would say. Anyway, have you met my mother-in-law, Gummy? Now she's a—





Just kidding. Gummy is a sweetie, but dementia is a bastard. Sometimes she likes to point out that although she's the one with a memory problem, that I forget things too. I always have, and of course she remembers that. I'd like to point out that although Gummy has the memory problem, she's not the only one who gets to use inappropriate humor. I've always done that too, and when she forgets, I helpfully remind her. 







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