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