Monday, August 21, 2017

Taking Care of Gummy—When Dementia Goes Down the Rabbit Hole, Sundowning

Taking Care of Gummy, S.R. Karfelt,
The Glitter Globe/S.R. Karfelt


Gummy keeps forgetting how to walk. If it happens while she's standing, and she falls, she winds up in the ER. It's happening more and more often now. Twice this week. 

We have ER visits down to a system. Finish your conference call. Let me get the caregiver paperwork. Brush your teeth. Stop for gas if necessary. Until this week it worked.

This week we had to change our Dementia Plan. Again.

All dementia game plans are made out of sand in a windstorm.

It's necessary to have one, for all the good it does.

This game changer found Gummy standing on TOP of her bed in the ER, one leg wedged between the railing and the mattress. Teetering.

She'd been left alone for entire seconds, you see.

She was leaving, you see. I've been here for hours. This is ridiculous. 

Sundowning doesn't have to make any sense at all. It is completely logic-free. The hospital bed rails were in Gummy's way so she'd decided to walk over them. Never mind the fact that she'd take a header onto the floor diving off in the process.

Hubby caught her just in time.

In the time it took us to get there, the ER workers had to catch her and take her back to her room five times. Not including her swan dive out of the bed attempt.

Now we have new guidelines we've implemented. If it's sundowning time, get there. FAST. Because who knows what she'll do if left alone for even a brief time.

Gummy's dementia presents in the way that she can't hold any new information. You can tell her she's in the hospital, and she'll nod and seem to take it in. 3-2-1. Gone. 

If left alone, five minutes might seem like hours to her. She'll decide to leave. Home, home, home seems to be a recurring dementia mantra, and when Gummy isn't trying to figure out what the heck is going on, she's working on going home. 

Home, of course, is an elusive apparition of when life made sense.

You can't get home from advanced dementia. 

They're stuck forever with this uncomfortable desire that can't be fulfilled. Like human ET's they're forever longing for hooooome. 

It's worse during sundowning.

Everything is worse during sundowning. 

Sundowning is a dementia term, but I'm not going to give you a technical definition of it. I assume you have the google and know how to use it. 

What I'll tell you is what I've seen first hand. 

There are many degrees of dementia, and every individual who has it has a unique presentation too. 

Later in the day, when sundowning kicks in, everything gets worse. In the morning Gummy is at her best. She wants coffee, makes her bed, what's she doing in this place? And why are there noodles in her purse?

During sundowning she drops down the rabbit hole so far that sometimes I'll sneak away when she goes into the bathroom. I know she won't remember I was there by the time she comes out in sixty seconds. Sometimes I can't bear the looped conversation any longer. 
     Where's that man I'm married to?
     I don't know. It's your turn to watch him. (We don't go over who is dead during sundowning. She can't hold onto it, and my goal is to make her as comfortable as possible.)
She gives my little joke a polite laugh.
     But really? He dropped me off here to go look at animals. Will he come back tonight?
     I don't know.
     Have you seen my husband? He left me here at the pool and went somewhere.
     I haven't seen him.
     Who's going to take me home? When did you see him last?
We're standing in her room at memory care. 
This entire conversation happened within about a thirty second time-frame. 

It's much more difficult to pacify Gummy later in the day. Her mind can go anywhere, all pretty much at the same time.

Whatever the scientific theory is for sundowning, I can tell you this, everyone with memory loss seems to have it in some capacity. At least the people I've seen. 

Another thing is that Gummy's sundowning seems to kick in anytime after noon, usually by two o'clock. From then on it gets progressively worse.

Maybe people are solar powered. I don't know. By the time dinner ends sundowning confusion can range from tears to anger to Gummy's latest presentation, forgetting how to walk.

I'm curious if today's solar eclipse will instigate an early round of sundowning.

The aides earn their stripes in the evenings. They claim it's particularly bad during full moons. I told them once that I don't believe in that. They told me I was welcome to spend the full moon there and I'd become a believer fairly quickly.

Summer concerts are coming to an end and I wanted to make sure Gummy could go to another one. Last time I took her she spent the night in the ER because it was the first time she forgot how to walk. This time I put her in a wheelchair. 

There's nothing funny about the first time someone really has to use a wheelchair. I always try to look on the bright side and make a joke for Gummy, but sometimes you can't see the bright side when you're over your head in sucks. 

I thought she'd balk. I told her she got to ride in the princess chair. She plopped right down without complaint. An aide put her feet in the holders. I'd have pushed her away dragging her feet. I didn't know. I've said before the semantics of caregiving isn't my strong suit. My gift is my talent for whipping out the mental dog and pony show and entertaining her or making her laugh.

Going into the elevator I went too fast and she nearly whacked into the wall.
     Sorry, Gummy.
     Yeah, right. Why are you laughing so hard?
I was. She did too, thankfully. In the end we found something funny about the wheelchair, even if it was just my driving.

Inappropriate humor is my thing.

Gummy's too.

We'd both rather laugh than cry. 

There's nothing funny about dementia. All the more reason to laugh in its big effing face.

The music was Big Band. I think music helps, even during sundowning. Gummy had a soda and chips, and when my daughter came with her own bag of chips, Gummy took some of those kind too. She talked nonsense, and we rolled with it, allowing her to choose whatever reality worked for her at the moment.

By that I mean we didn't correct her about where she was, or when, or who anyone was. She thought everyone there was from her church. She looked for the kids every time a song ended, leaning forward in the wheelchair.
     Are my kids down there? Who's watching them?

At one point something inside the big top tent jingled. It sounded like metal keys clanging. Gummy sat up straighter.
     My husband's here! Did you hear that?
     Is that the sound he makes?
     Yes. Didn't you ever notice that?

Throughout the entire concert she peppered her granddaughter with questions.
     Where is my husband?
     Who is that woman? I know her!
     Get her attention. I want to say hello.
We tried to avoid that. It's usually an aide from memory care she's already quizzed about how she knew her. The aides are mostly busy trying to keep tabs on other memory care patients without family there to help corral them. 

After the concert I pushed Gummy back through the grass and upstairs to memory care. 
     Why are we going in here?
     What's this place about?
     Where did the kids go?
     Where are we going?
     You're not dumping me here are you?
     Oh, this room. This is the room my husband bought. He put it in the basement for when we get company. Is he coming to get me?

This morning memory care called at the crack of morning to tell me Gummy again was heading for the ER. I hurried up, took a ten second shower, and headed out the door in damp clothes because who has time to dry off?

I had visions of Gummy standing on that hospital bed.

Before I even got to the hospital they called to say she could go back to memory care. That took less than an hour. That has got to be an ER world record.

Don't think I'm complaining. I know they did their job. They just did it quickly. This time Gummy hadn't fallen. She wasn't sundowning. This trip to the hospital had no system. Like the first time, it was all new and extra worrisome. She couldn't get out of bed and hurt. 

Once more I pushed her out in a wheelchair. Once more I had no idea how to cope with the foot pads. I helped her step around them, although I'm sure there's a way to move them. I got her into the passenger seat in her nightgown and socks. She didn't want breakfast, but thrilled to a sausage muffin and coffee. A lowly fast food drive-thru never looks so beautiful as when you've a carload of preschoolers or someone with dementia.

Back at memory care another wheelchair appeared. This time with someone who knew how to drive it. Gummy wasn't sure where we were or what was going on, but she walked right into her room and sat in her new chair. The kind physical therapy recommended for her. A Queen Anne style with arms she can use to get in and out of. 

Even before sundowning the emergency room already faded away. She spent the day doing what she's been doing her past year in memory care, pacing the floor to go home. It's a specter of her earlier coups, a nebulous Gummy, but oddly reassuring. 

Come evening I returned to Gummy's sundowning wraith with my bag of tricks. She spiraled back to that chair and watched with bewildered eyes as I tended her nails and rubbed lotions and told stories illustrated with pictures on my phone.

In the quiet night they lassoed her and tucked her into bed.
     My dad, she chuckled, is a ladies man even though he's married.
Naughty secrets whispered in the dark, true or not doesn't matter. She doesn't know my name or hers right now, it doesn't matter either. For a moment she's here and comfortable. That's all that matters because we have nothing else with this disease.
     Dream of sailboats, I say like I used to say to my little kids.
     Alright, she whispered back.
And for one brief shining moment in the dark, we both found peace down the rabbit hole. 

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