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.

Seek and Find

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My uncle should win an award for most items stolen in a single day. Of course, in his defense, some of these things have been missing for weeks and I only found them today. And he didn’t steal them. They magically appear in his room.

My house is a blackhole that spits random objects into the labyrinth that is his bedroom.

It makes perfect scientific sense.

I woke up this morning, went to go get my morning cigarette and couldn’t find the old pair of the husband’s boots that I slide on every morning.

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It’s completely my fault for leaving them in the hallway by the door, which happens to be the same hallway that is right next to my uncle’s room. I came in to turn his TV on and, Oh look. There are my boots.

Me: Hey. . .Can I have my boots back?

Uncle: Huh? Those were sitting there. I just shoved them back further out of the way.

Me: Okay. I’ll move them out here.

Uncle: Don’t you have a room to put them in?

Me: -Thinking- Of course I do, but you decided they belonged in your room somewhere between the hours of midnight thirty and five a.m. 

You’d think that would be enough, wouldn’t you? But no. Of course not. They went missing again when I went to go out after the kids had gotten on the bus.

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This time they were outside. On the steps. Just sitting there all nice and neat like that’s where boots belong. I almost broke my neck tripping on them.

So, I made my uncle his lunch and took it in to him. There on his bed was a library book, stuffed full with pictures and bulletins from church and other random pieces of paper.

Me: Why do you have a library book?

Uncle: What?

Me: Is that Dude’s book? (Dude being the boy monster)

Uncle: I don’t know. It’s been here forever.

And it had. Dude’s book had been missing long enough that the school stopped sending weekly reminders about it and started sending daily ones. I’d had to call in, explain that it was probably lost in the maze of my uncle’s belongings and that I would get it to them as soon as it turned up. They finally started letting him check out books again. The daughter is also missing a book. I’d like to say it showed up, but. . .alas, it has not.

A few moments ago, he came out with his plate full of food and told me he needed a fork.

I’m forgetful, okay? But I wouldn’t have given the man a plate of food with no fork.

I’m not that bad. Really.

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Did we find the fork? Of course. It was in his pocket.

Uncle: Did you put it there? I almost sat on it.

Me: Sorry. My mistake.

My soul is one lost fork today in the pockets of a man with dementia.

Herstory Lesson: A fork may seem like nothing important, until you sit on it. Then the fork becomes the center of your universe.

 

 

 

I Could. . .

I could lie.

I could totally lie.

In fact, things would be immensely easier if I started doing it.

According to some, I’m a habitual liar. Hell, I got so inflamed by that arrogant idea that I immediately set out to work on my next manuscript titled Perjury. 

I mean, if I’m going to do it. . .I’m going to do it right.

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My uncle was denied placement at the nursing home we chose. Which means we have to find another nursing home. He was denied, because he is a wander risk and they don’t have a locked unit. The need for a locked unit severely knocks back our choices in appropriate nursing homes.

It also knocks out about 99% of assisted living homes. . .if he could even afford to go there.

But I could have lied.

He got denied, because I was honest about his wandering habits at home.

I could have lied.

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I could have told them that he doesn’t go outside fifty million times a day.

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I could have told them that he never gets agitated or threatens violence.

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I could have said that he knows he is going to the nursing home, completely accepts and understands it, and probably won’t be upset at all by the move.

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I could have said that he has never. . .not once. . .threatened to run off and live in the woods like a hermit.

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I could have let him go to the meeting today after dressing himself, but I made sure he had decent clothes on and everything was buttoned right this morning so he wouldn’t be embarrassed and could have lunch there.

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I could have lied.

And if I had lied, he’d probably have gotten approved. I’m not sure how long they would have kept him, but we’d have a foot in the door at least. I’d be a step ahead maybe. It might have even benefited me to lie. It might have worked out for him. Might. . .might. . .might.

So I suppose I should be understanding when others around me lie, right? I should sit back, nod my head, and say, Why sure. It makes complete sense. If we make the situation sound worse, we’ll get more help. 

Except when you are an organization that is set in place to help people you have a certain level of power and influence. And that power and influence can be used to hurt people. . .especially when you have lied about the situation, made it more than it is, and because of that, have given a bad reputation to the people you are supposed to be helping.

So when I come to you for help, and I explain the situation, and hope that you can help guide me in the right direction. . .these things should not happen:

1. You never actually get back to me about the problem, so weeks later I start trying to figure it out myself.

2. I figure it out and find out that you talked to the same people I have. . .They were even so kind as to send me the correspondence from you.

3. You lied about the situation. You lied in a way that made you look good and us bad. You lied to make it sound drastic. You lied to make it sound like an emergency. You lied and made it sound like a house raid needed to take place.

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As the husband would say, “I will beat you ’till you shit teeth.”

Don’t lie on my family.

Herstory Lesson: When life sucks you get to find out who has a nice dishonest streak. 

 

 

 

 

 

All in a Golden Afternoon

That’s a happy little title. . .with its happy little words like “golden” and “afternoon”. Those sound like happy words. They sound like the premise to something wonderful.

I’d like to sentence those words to the fiery depths of hell, along with “Can you hold on second?” and “Let me get you that number.” and “I’m sorry, but you are out of options.”

To hell with you words.

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Yesterday I ran the gauntlet for my uncle. Between the hours of 8 AM and 11 PM I made 66 phone calls. I received 37 phone calls. I sent 29 emails. I received 103 emails. I digitally mailed in three four plus page forms for various things. I googled until even Google was like:

“Bitch, I got nothin’.”

I tried every loop hole I could find to get him placement in the right kind of facility. I dug through the sludge of governmental agencies. I was directed to speak with Ms. So-and-So at the Department of We Only Pretend to Care, who told me to talk to Mr. I’m-Too-Busy-For-You at the Office of You’re Poor And We Don’t Care, who directed me to Mrs. Utter Confusion from the Corporation of Why Did They Tell You To Call Me?

And I was directed back to Ms. So-and-So.

And the circle continues.

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By the end of last evening I had realized that I’d spent the entire day ramming myself head first into the same damn wall again and again. I was the definition of insanity personified. The thing is, my uncle falls between the cracks. There are two big conditions that can get help for someone in his position:

1. You’ve got money. You can totally afford anywhere that can be found, so no problem.

2. You’re sick enough. And by “sick enough”, I mean sick enough to their standards of what they are willing to help with.

My uncle doesn’t have money. . .and by their judgement, he isn’t “sick enough”. What’s even better is that the places that specialize in handling Alzheimer’s patients are even more expensive. As they should be. This isn’t exactly easy work.

Having one of these issues is fine. Having both means a trip straight through the cracks into the Land of No Options.

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In the Land of No Options is where the husband and I sat back to discuss. It wasn’t the first time this idea had been mentioned, but it was time we nailed down the settlement agreements.

My uncle is moving in with us. We’re looking for a home, and he’ll come with us and I will stay home and care for him.

Yesterday I thought I’d be freaking out about that idea, but today I feel almost like a weight has been lifted. I can step out of the gauntlet. I can do what is right for him, in a manner that may even help the husband and I in our endeavor to build our own home. . .I think he will be happy with us.

And maybe I’m in a bubble and trying to keep my frail emotions above water, but I am not doing the stress today. I’m going to recognize that we have a plan and I am going to make it effective.

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So today I have called a Realtor.

I have called an Adult Day Care Center.

I have signed up for free classes to teach me how to be a better provider for an Alzheimer patient.

I have filled out the necessary forms to help him receive aid for in-home care.

I have made him an appointment with a new neurologist to discuss treatment options.

I am working on finding placement for his dogs.

Today I have a plan. . .and it’s an I Don’t Do Bullshit Plan.

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Herstory Lesson: Try not to go full force into your plans. Give them time to breathe, so you can be prepared for the changes that come.

Advice from Everyone-Knows-the-Answer-Except-Me

I don’t talk about my uncle here much anymore, and part of me is sorry for that, but part of me understands that I’m at a place where I struggle to find humor in the situation. Alzheimer’s is a disgusting, terrible disease, but my uncle and I share the ability to laugh about most things. The last month or so has been hard as we are moving towards the prospect of putting him into the nursing home.

Let me just say that this is never some decision that is taken lightly. While there is a certain kind of relief in the thought, there is also a ton of guilt.

He’s so young to be there.

He could probably hold out here a bit longer.

It’s not that bad, is it?

Yes. Yes it is. And we can’t give him the kind of care he needs here any longer.

But it never fails that everyone else has an opinion on the matter. Let me explain. When you become a caregiver, everyone else knows the answers to all your problems. They’ve all of a sudden got it all figured out. And their vocal. I mean, people will come out of the woodwork to tell you how to improve your life, fix your situation, and best of all, explain what it will be like to care for someone.

Everyone becomes a doctor specializing in Alzheimer’s.

Everyone becomes a life coach.

Everyone knows the answer except me.

So today I’m bringing you the answers, as given to me countless times by people who aren’t in my situation, aren’t caring for a loved one, aren’t dealing with someone with Alzheimer’s, and doesn’t know what the heck they’re talking about.

Thank you, you egotistical jerks for bringing the laughter back.

1. You should come over? I can’t. I’ve got to stay home with my uncle. Oh he’ll be fine. Just let him stay on his own for a bit. He could probably use some time to himself. It’s got to be hard for him with the kids and all around. He’ll appreciate it.

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Yes, well. Let’s just leave the man in the house alone who has hallucinations and sees people that aren’t there. I’m sure he’ll appreciate it when he’s trying to chase the bad guys out of his room alone. Or when he goes up in the attic to try to find his hunting rifles. Or when he gets mad about the invisible people trying to steal his truck. He obviously just needs some alone time. I’ll bring the hallucinations with me so he can get some rest.

2. He’d probably be happier if you let him do some of the things he used to like to do. 

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Of course he would. Tell you what, I’ll pack him up with all his fishing gear and hunting rifles. I’ll dress him in camo and you can just have yourself a blast taking him out to do all the outdoorsy things he used to love. Hell, I’ll even let him drive over and meet you there. . .so you can walk around the woods. . .with a man who can no longer recognize his own reflection in a mirror. Happy hunting.

3. Just put him in a home and move on with your life. You’re too young to be doing this.

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Let me just say how happy it makes me to know that most of the people have this sort of advice. These are the future caregivers. “Just throw them in a home and move on with your life.” Gotcha. I’ll toss my morals, ethics, and soul right into a bag with him. I mean, this is such an easy decision to make, right? Sure. You just make sure you call me when you get older and I won’t beat around the bush. I’ll send you off to Shady Pines in a flash. It’s what you’d want.

4. I talked to him the other day and he seemed just fine. He didn’t even repeat himself much.

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Yes, welcome to the wonders of Alzheimer’s. . .you know. . .that disease we know next to nothing about? Moments of clarity are wonderful little rays of sunshine in an otherwise cloudy mind. You got him on a good day. Good for you! Oh, did he just tell you the same story for the twelfth time? Welcome back to reality.

5. Have you even considered trying him back on medication? He wasn’t on it that long. I think it would benefit him to try again.

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You mean the medications that turned moderately controllable hallucinations into episodes that involved knives and the police being called? Right. I’ll get right on that. . .as soon as my super strength returns and my order of Super Healing Potion comes in from FedEx.

6. Do you know what dementia does to the brain? -Proceeds to give me a long lecture on how the disease effects the brain, the short term memory, emotions, etc.-

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Well aren’t you a happy little font of information. After living with my grandfather who suffered from dementia and now caring for my uncle. . .I really had no clue what this disease was doing, or how it worked. It’s a constant surprise over here. The doctors have told me nothing, and I was never one to learn from my past. It really is good you were here to explain all this to me with your extensive medical knowledge. . .Where did you get your degree again?

7. This can be destructive to a family. You need to just find a way to get him out from your inner circle before it causes problems with the core of the family.

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You don’t say? Get him out of my inner circle? I suppose I should just put him down then, like a dog that might bite my children. In fact, why do we even bother to be caretakers for our sick and our elderly? It’s obvious that it could be draining and cause emotional frustration. We should just stick them somewhere away from us and let them die.

So to all of you who like to have these conversations with  me, I just want to share my and my family’s heartfelt thank you. Now shut up.

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*This post includes a lot of sarcasm. I certainly don’t feel like we shouldn’t care for our sick or elderly, or that they should be euthanized. 

**Also, my uncle has never physically hurt anyone, but part of this disease does involve aggressive behavior, anger management issues, and the belief that everyone is out to “get them”.

Herstory Lesson: If there were a quick fix to every issue, no one would have any problems.

12 Days of WTF

On the first day of Christmas the cosmos gave to me

An Uncle with progressing dementia

He has a good sense of humor. We laugh about it.
He has a good sense of humor. We laugh about it.

On the second day of Christmas the cosmos gave to me

Two loved ones in the hospital that I have to go visit

This. Is. Grandma. I mean, not the picture, but the description. She would totally do this.
This. Is. Grandma. I mean, not the picture, but the description. She would totally do this, but with a few eff bombs dropped in for good measure.

And an Uncle who doesn’t remember today is Monday, not Sunday…no church.

On the third day of Christmas the cosmos gave to me

Three more things I forgot to wrap last night

imagesTwo loved ones in the hospital that I have to go visit

And an Uncle who just lost his pants again.

On the fourth day of Christmas the cosmos gave to me

Two kids to get ready for school plus two packs of brownies to bake at 6:30 in the morning

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Three presents staring at me like, ‘Whatcha waiting for?’

Two loved ones in the hospital that I have to go visit

And an Uncle who poured three different cups of coffee so far.

On the fifth day of Christmas the cosmos gave to me

Five rooms that need to be cleaned yesterday

downloadTwo kids plus two packs of brownies that are in the oven but are STILL not done

Three presents that may get rolled in tissue paper

Two loved ones in the hospital that I have to go visit

And an Uncle who just said, “Who’s that?” when my son ran by.

One the sixth day of Christmas the cosmos gave to me

A six foot tall pile of paperwork I haven’t filed all year

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Five rooms to be cleaned and I should start with the fridge and whatever that stain is

Two kids plus two packs of brownies that are finally done but I have no plate to send them in on

Three presents that might just get tossed in the box, ’cause Santa doesn’t wrap, does he?

Two loved ones in the hospital that I have to go visit

And an Uncle who claims to know the men in the Tandy catalog.

On the seventh day of Christmas the cosmos gave to me

Seven more minutes until its time to take the kids to the bus stop

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A six foot tall pile of paperwork that would make good kindling

Five rooms I might clean tomorrow

Two kids plus two packs of brownies that are going in this pan and I’ll just hope someone returns it

Three presents I got to take the tags off of

Two loved ones in the hospital that I have to go visit

And an Uncle who is wasting all my precious coffee…

On the eighth day of Christmas the cosmos gave to me

Eight hours to get this grimy pair of bibs washed for the husband

download (3)Seven more…no five more minutes until the children get on the bus and out of my hair

A six foot tall pile of paperwork that makes me think we should save more trees and not send this crap home

Five rooms that aren’t getting done this week. Maybe next week

Two kids plus two packs of brownies that I’ve got to figure out how to cut nicely into 26 pieces

Three presents and one’s for a dog so I so don’t have to wrap that

Two loved ones in the hospital that I have to go visit

And an Uncle who just made a record of times to go in and out of a house in under five minutes.

On the ninth day of Christmas the cosmos gave to me

Nine more hours to go until the husband wakes up and has to run off to work eight days straight

'Cept there's no tie involved in his work...more like hard hats and cranes and stuff.
‘Cept there’s no tie involved in his work…more like hard hats and cranes and stuff.

Eight hours to try to remove…What is that?…off his bibs

Seven minutes…no now it’s ten minutes of freezing outside while the bus doesn’t come

A six foot tall pile of paperwork that I’m thinking of turning into origami

Five rooms that if I just get the living room and bathroom done, no one will notice the others

Two kids plus two pans of brownies that I’m going to have to drive to the school…and I should get out of my sweatpants for this

Three presents I’ve got to figure out what I’m doing with, ’cause it’s almost time to box and ship them

Two loved ones in the hospital that I have to go visit

And an Uncle who is hiding things in his truck again.

On the tenth day of Christmas the cosmos gave to me

Ten times of hearing the Kid’s Bop Shuffle

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Nine hours until grumpy gets up and I have no idea what I’m feeding him tonight

Eight hours to…maybe I’ll just spot clean them. That’s a big spot…

Seven plus ten minutes to get to the school in my car that isn’t warmed up

A six foot tall pile of paperwork that I want to try swimming in like money, just to pretend

Five rooms that seven people trample through all day, so give me a break

Two kids plus two pans of brownies that I took to the school while the principals and receptionists eyeballed the box like, ‘I’m in 2nd grade today’

Three presents…I got to get the blanket washed, too. And wrap the monkey, so let’s make it five.

Two loved ones in the hospital that I have to go visit

And an Uncle who I think just cussed out the guy in the TV…again.

On the eleventh day of Christmas the cosmos gave to me

Eleven recipes on Pintrest I swore I’d try this year

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Ten times of hearing, “To the left, to the left, to the right, to the right, now kick, now kick, now kick, now kick…”

Nine hours until I lose him for a week and by the end of it he’s grown a beard and I am looking at him like, Who are you?

Eight hours to dump those bibs in the tub and spray with Febreeze until the stains melt

Seven people who stop me on my way out of the school and I got rid of the kids…I want to go home

A six foot tall pile of paperwork that…let’s face it, will still be there tomorrow

Five rooms and only one is decorated for Christmas, we can use the front door and let people squeeze by the tree

Two kids plus two pans of brownies that I took to the school…and forgot to take napkins

Three piles of things to ship to my brother and I wonder if he’ll get it in time

Two loved ones in the hospital that I have to go visit

And an Uncle who used my Garnier hair repair oil yesterday…he’s bald.

On the twelfth day of Christmas the cosmos laughed at me

With twelve mental breakdowns left to go

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Eleven recipes on Pintrest…hell, everything’s on Pintrest and ain’t nobody got time for that

Ten times of saying, “CHANGE THE SONG”

Nine hours until the husband wakes and works on a week long zombie impression that could fool the Walking Dead cast

Eight hours to…I promised I’d get them clean -whines-

Seven minutes of talking to the vice principal, but leaving with a smile ’cause he said I was doing a good job with the kids

A six foot tall pile of paperwork that I’m just going to yank the kiddo’s artwork out of and trash the rest

Five rooms and maybe a day at a time…next year?

Two kids plus two pans of brownies that I took to the school and they’ll eat them with their fingers anyway

Three piles of things to ship to my brother and get all sappy because he won’t be home with us this year

Two loved ones in the hospital that I have to go visit

And an Uncle who thankfully can still make me laugh.

Merry Christmas.