A Cruel Joke of a Disease

It has been a tough week.  When you sister has early-onset Alzheimer’s and you witness firsthand how it is robbing her of the stuff we all take for granted, it’s hard.

How to hold a fork.

How to get it to your mouth.

How to remember to swallow when drinking.

Sis is mostly nonverbal these days, but every now and then she’ll say something, like the day she threw up her pills they had given her before breakfast at the care home. I took her a protein drink, only we had to add thickener to it.

“This is lumpy,” Sis said.

She was correct. Then she threw up again.

Then just yesterday, I was trying to get her to say good-bye to me as I headed out the door. I was down the hall when she yelled, “Come back!”

I came back and asked her what she wanted to tell me, but she couldn’t.

I left again, and again she yelled, “Come back!”

I went back, and she still couldn’t tell me. I had to go home and practice for my chorus audition. I was stressed about the time crunch.

Today, with no stress about anything, I sat and sang rock songs to her while the Alexa screen provided the words. It’s a karaoke machine the size of a desk alarm.

“Rocket Man, burning up the fuse up here alone.” I never knew those were the words. Now I do but I won’t remember them. Dust in the Wind, Come and Get your Love – I learned a lot. Sis had her eyes shut the whole time.

“What did you want to tell me yesterday when you yelled, “Come back?”” I asked.

She started to cry. “I don’t remember.”

That’s the thing about Alzheimer’s. Even though you have it, you know something’s wrong. And you can’t express yourself. And you can’t stop it.  You can’t do anything about any of it.

It’s a nightmare to witness and a heartbreak for your mother, who thinks Sis is rejecting her daily phone calls because she doesn’t pick up. But she doesn’t know how to answer an Alexa call anymore.

You explain to your mother while she cries about losing her eldest to this horrible disease.

I know this post is a Debbie Downer, but sometimes you just have to vent. Friends who complain because I’ve changed, I’m no fun, I don’t drink anymore, I’m not the designated driver anymore, blah, blah, blah, don’t have a clue what I go through each day as I walk out of my sister’s room and roll my eyes at no one, registering in my brain how much Sis has lost in the last four years.

We should all take a lesson from this post. If you can be only 69 years old and be losing the battle with early-onset Alzheimer’s, your friends, relatives and strangers had better get off their butts and enjoy their lives right now.

Because you never know how many cognitive days you have left.

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