Top Five Questions Regarding Alzheimer’s

I spent a lot of time making jokes about things in my life that are actually pretty serious. I mean, even after the miscarriage, I pushed myself to find some way to smile. I take the moments that happen with my uncle and I find the humor buried beneath them. I like to laugh. I find healing in laughter. I learned a long, long time ago that laughing at myself was the best thing I could ever do.

Part of the reason the husband and I work so well together is because he has this same humor-loving trait. The most serious of discussions can find the two of us, hands over mouths, snorting with laughter. It’s not that we don’t care. It’s not that we can’t take anything serious.

It’s how we deal with the constant rain of shit life pours down.

It’s our therapy.

So when we buried his father, we cracked jokes.

When his grandmother was dying in the hospital, we cracked jokes.

After the week from Hell I’ve had, we crack jokes.

But sometimes. . .sometimes I need to make it a little more real. Sometimes I need to address things without so much humor. Of course, there will still be some. Because it’s me and it’s practically wired into who I am.

So here are what I believe are the top five questions I get asked most often, the first one being from my children.

1. Why does he yell at his TV all the time?

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Part of this disease involves the inability to tell the difference between what’s real and what isn’t. The part of the brain that helps us navigate the world, see the objects around us and be able to identify them, understand the things we see or smell, is eaten away by this disease. The brain is no longer able to tell that the people on Law and Order aren’t actually right there in the bedroom with you.

2. Does he have Dementia or Alzheimer’s?

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Dementia, Alzheimer’s, and Parkinson’s are actual all in the same family. They’re practically the same disease, except they affect different areas of the brain. Where dementia is a relatively normal occurrence for most elderly people, due to the Hippocampus (the part of your brain that houses your short term memory) deteriorating. . .Alzheimer’s is an disease that begins in the Hippocampus and then continues over the course of many years to travel through the rest of the brain.

3. Can’t he just take some medicine?

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There are lots of medications out there for Alzheimer’s. The problem is that a lot of these medications can cause really bad side effects, like hallucinations (nothing you want to experience with someone with this disease). Also, this is still a relatively “new” disease. We don’t know enough about it and there is no cure.

4. He makes rude jokes and said a few cuss words. He never used to be that way.

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One of the first places this disease travels after leaving the Hippocampus is to the part of the brain that houses the language center. Besides the wild mood swings that can come when dealing with a person with Alzheimer’s, they may find themselves unable to form sentences, make jokes or use language they never would have before. The part of their brain that helped them to speak is being destroyed and so whether it’s a “fuck you” or “I love you”, be happy they are capable of still speaking.

5. He seemed perfectly fine to me.

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There are days with no incidents at all. Days when I can speak to him and I think he may actually understand what I’m saying. He has definite clear moments and moments where he is certainly more confused. He has Sun-Downer’s, which means he is most awake in the evening. His mornings are hard. He doesn’t do well the first little while after he’s woken up, but then we can have lunch and discuss politics and he’s right with me. Other times, I’ll have to send him back to his room five times to get changed back into his pajamas, because he’s in a suit again and ready for church at midnight.

People ask/say a lot of different things to me, but my mom showed me this video last night and I think it explains it better than I ever really could. Please take a moment to watch.

I’m going to open the floor up here for the next few weeks or so. If you have someone in your life, or have been affected by Alzheimer’s, and want to share their/your story, please get in touch with me.

We should talk about it. We should share.

And we should never be afraid to laugh.

Herstory Lesson: Learn compassion, even for the things you may not understand.

*UPDATE

This morning my uncle and I discussed museums. He remembered taking me to the Holocaust Museum in Washington, D.C. We talked about parts of it, things that stood out to us. I asked him if he remembered the shoes.

“You were so young. You stood there crying and I remember that I hugged you.”

He remembered. The shoes hit me hard. I’d made it through the whole museum without losing my composure, until I saw the shoes. I stood there on that balcony and sobbed. My uncle had been my chaperone for that trip. We had taken the longest of any group to walk through the museum. Everyone else was headed to the cafeteria while he held me there. We both cried and looked at the shoes.

I cried again this morning. Not for the shoes, but for his remembrance of a moment that meant something special to me.

Chasing the Buffalo

I spent my day yesterday reading blogs and getting sucked into the world you all are so kind to share with me. It’s better than my world right now, so I was perfectly content being there.

Then the Orange Buffalo reports began to come in.

Rarasaur, awesome lady that she is, posted My Orange Report, which is basically a set of questions formed from her husband’s book Orange Buffalo. I kept reading everyone’s responses and thought. . .

Self. . .I should do this. 

And so here we go.

1.  In the book, Orange Buffalo by Grayson Queen, the orange buffalo is a legend.  Tracking a regular brown buffalo is a feat of skill.  A rare white buffalo thus represents the nearly impossible hunt for something, whereas an orange buffalo represents the search for something that simply doesn’t exist.  Have you ever searched for an orange buffalo– a truly false or impossible dream?

My Orange Buffalo is that second cousin, twice removed, that nobody wants at the family reunion, but the bastard keeps showing up anyway. I call him My Big Little Secret Fear, but most of you probably know him as Acceptance.

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I have this strong streak in me, at least that’s what I’m told, that gives off this “I don’t give a fuck” vibe. I try really hard to actually feel that way inside, and I’ve made great leaps towards getting to the point where I can truly tell Acceptance to go take a long walk off a short pier. However, I think we are wired to want to be accepted. We want to fit. It’s a survival mechanism, really. I still find myself crawling around sometimes, hoping that I won’t get kicked. I’m hoping for a little pat on the head to tell me I did a good job. I don’t like Acceptance, but I’m related to that guy, and so I feel like I’m forever chasing that family reunion down, trying to nab him and keep him close by.

2.  What’s the greatest lesson you’ve learned from a break-up?

Take. My. Time. I always tried to rush through healing, whether from a break-up, a loss. . .anything really. I wanted to get past the part where I felt weak and push right back into the woman who has her head on straight and knows her game. After leaving the King of the Douchebags, I learned to give myself time. I knew I’d be okay. I knew I was strong. I knew this wasn’t some Twilight scene where I was going to curl up in the woods and plot ways to hurt myself to get his attention back (Sorry. . .but I hate the way that woman made the female protagonist a walking doormat). I learned though that I can accept not being okay. I’m allowed to have days where I’m just not okay.

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3. Do you remember what you wanted to be when you grew up?  Did you get there?  If not, what happened?

I wanted to be an archaeologist. Seriously. I wanted to be Indiana Fucking Jones. I didn’t want to be stuck in a museum or anything. I wanted to be out there kicking ass and destroying everything to save that one priceless item that no one even believed existed. I wanted ninja skills and friends all over the world and I was going to do it.

There is no Indiana Jones. I am sad to report it, but someone had to say it. Excuse me while I take my sweatpant wearing self to the corner to cry.

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4. Is there something in your past you’d like to do over?  How do you think it would change your life if you had the opportunity to do so?

I would be there when my grandmother died. Regardless of Tripe AAA and his determination to keep me by his side that night, I would have gotten there. I would have walked. I’d have done anything to be there. Would it have changed my life? I don’t know, but I could knock out a big chunk of the regret I still carry around inside me.

5. In the novel there’s a repeating series of lines, referring to society’s predictions for the main character– the good and bad.

What a nice boy, a good boy, so much potential. He’s going to grow up to be president, a novelist, a hypocrite, a sellout.”

Write your own.

“What a good girl, a good girl, so much potential. She’s going to grow up to be a poet, a scientist, a liar, a fake.”

So there they are, the wonderful questions Rara shared. Head on over to her blog and check it out, write your own responses, and link up!

Link: My Orange Report – Rarasaur

 Herstory Lesson: Take what others say about you and make it your own. They’ll never stop talking, but you can stop letting it hurt you.