To My Kids: In Case of Dementia, Read This.

Hi kids. If you are reading this, it must mean that the dementia finally got me. That sucks. For me, certainly, but mostly for you because your minds, unlike mine, are presumably still functional enough to see what’s happening. I know how much it sucks because as you may recall, I’ve been in your shoes when my dad had the same disease. Which, obviously, is exactly why I’m writing this: we can call it an Advance Dementia Directive. It is not, as you might suspect, simply because I am bossy and rather particular in my tastes.  

Actually, it is that. But it’s also because I want you to have the guidance and advice that Pap Pap never got to give me.

So here you go. Please don’t treat these requests as optional. I do believe in life after life, so follow these recommendations or suffer the wrath of Ghost Mommy. I dare you!

Ghost Mommy may have lost a few pounds.

1.  Feel free to laugh at me, if I do or say something funny. THIS IS VERY IMPORTANT. It doesn’t matter if I meant to be funny, it doesn’t even matter if I understand why you’re laughing. I will not take it personally and my confusion will not linger. Laugh. It’s about the only good you will get out of this, so take it when you can. 

2.  Soft clothing. I don’t care if it looks like a tablecloth or set of curtains. For that matter I don’t care if it is a tablecloth or set of curtains. If it’s soft, I will wear it. Dress me in jeans and you’ll be checking under your bed every night for the rest of your lives, and trust me, haunted-mommy-under-the-bed will be way uglier than even early-morning-trying-to-finish-writing-something-but-you-two-won’t-quit-arguing-over-a-Playstation-game-mommy. 

3.  Nursing homes might try to tell you that I have nutritional needs. I do not. Their only goal is to keep from getting sued. Tell them I must eat what I like and if that means all of my meals include pureed cinnamon rolls, so be it. I’m not going to get any healthier. Let me have the goddamned sugar. 

Extra credit: push me uphill in a wheelchair while carrying a man bag.

4.  Very important: socks. I HATE WHEN MY SOCKS ARE BAGGY AND FALLING OFF MY FEET. Please, I am begging you, make sure my socks are tight, but not so tight that they cut off my circulation. You know what, I’m just going to buy my own socks. I’m going to start stockpiling them now, then I’ll attach them to this letter and you can tell all my grandchildren, “You know, this is just like Grandma! Always solving problems! Always living her best life!” And so on. 

5.  Come to see me. At the very least hologram yourselves into my room, as I’m sure that will be a thing by then. 

6.  While you’re there, make friends with the other residents. They’ll be happier for it and so will you. 

7.  On days you can’t make it, hologram a Tom Petty concert into my room and follow it up with Prince. I’ll make some playlists. I don’t want to hear any of the songs I don’t like. If I cry while listening to those songs, know that you have done well. 

My room at the nursing home.

8.  While I’m on the subject, hologrammed Golden Girls episodes would be super-fun; either that or perhaps there can be some kind of virtual reality (perhaps one of you can invent it!) where I’ll actually be in a Golden Girls episode. With cheesecake! It’s a dream come true.

9.  You can bring your kids to see me if you like, but it’s not required. HAHAHAHAHA! You’re thinking, WHAT??? Not required? Then how come WE had to go see YOUR DAD all the time? I’ll tell you why, it’s because you were good kids and you knew it was the right thing. If you’re raising little hellions that refuse to visit their grandmother, that’s your problem, not mine. 

10.  If I become mean or otherwise not myself, know that I love you. 

11.  When I seem distant and disengaged, know that I love you. 

12.  When I say things that don’t make sense, know that I love you.

13.  When I stare out the window instead of smiling at you, know that I love you.

14.  When I don’t know your names or who you are at all, know that I love you, KNOW THAT I LOVE YOU. 

15.  Lastly – if your father is the one to get dementia instead of me: well, it’s hard to imagine nice socks and Golden Girls holograms will keep him happy. Maybe send him into the woods with antlers strapped to his head. I don’t know.

Just kidding. Be nice to Daddy.

We both love you.

 

 

Fat Is The Memory That Never Fades

Cloud, tree, chair, shoe. Nose. Hat. These are just a few of the many, many words that my dad no longer knows. He can still put together a coherent sentence, usually – as in, “here, have some” (when trying to share his lunch) or, “go that way,” (when I’m pushing his wheelchair to take him outside). Object names, though, are lost to him. As are most descriptive terms.  

Except for one, and that is FAT. Fat, he remembers very well. 

“Look at her,” he’ll say, chuckling, nodding toward a nurse or aide. “Fat, huh?” 

The nurse or aide will pretend she didn’t hear and maybe put rat poison is his dessert later, who knows. I will say “shut up!” under my breath, but by now he has forgotten all about it and gone silent. You have to wonder what he’s thinking about, at those moments. Maybe it makes him happy to get something right, for once. Maybe he’s clinging to fat as his last known adjective, and wants to throw it around whenever possible. Whatever. The rat poison won’t kill him so I let it go. 

He’s never called me fat, or at least, he’s never used the word directly. One day he told me, “You’re different . . . there’s more of you.” If ever you need to tell a person they’ve gained weight, I suggest this particular wording. More of me! How can that not be a good thing? It was practically a compliment. Except not. 

Another time, the only seat available in the TV lounge was a smallish metal folding chair, which I pulled up next to him. He watched in horror as I sat down. “Jesus,” he said. “You’re lucky that thing didn’t break.” I laughed, because it was funny. I mean, coming from a dementia patient. If a guy sitting near me in a restaurant said it I guess I’d have to stab him. 

I found this while searching for images related to “fat.” I am truly mystified this time.

It’s sort of amazing to me, how “fat” has become such an insult. Like, you could describe a person as tall, and no one would be mad at you. But fat – really, just another word to describe shape or size – is enough to make me want to crawl under my seat when my dad says it about a nurse. If I could fit under my seat. Which I cannot. Dammit. 

Say we were living in a society where food was scarce. In that case, we’d all be praying for fatness. Instead, we live in a world where food is in sometimes appalling abundance, and so for that reason, it is most virtuous to avoid it. Even if you must take drugs to do it, or to take a stapler to your internal organs, or worse.

My husband, I think, has worried that I’m on some kind of fat crusade. Like, I’m purposefully rebelling against the system to make a point. That is not the case. I became fat because I wanted to learn how to be normal, and it turned out that weight gain was an inevitable byproduct of ditching 30-plus years of dieting. I think I am closer to normal now than I have been since approximately 1984. I have not eaten ice cream in probably two weeks or more, and not because I’m on a diet, but because I didn’t want any goddamn ice cream. I try new things. I cooked Brussels sprouts and liked them. I had never eaten Brussels sprouts before that. 

I think this is progress and I think it’s health. And too bad for anyone who looks at my appearance and thinks otherwise.  

As for my dad, I will go to see him later today, and he will likely look me up and down and laugh, or poke me in the stomach and say, “that’s big!” And I’ll say, “I might be fat, but you’re the one who’s trying to drink coleslaw through a straw.” And then I’ll laugh, and he’ll laugh along with me, because as we all know, insults only hurt when we agree that they’re insulting.

My family and I will participate again this year in the Walk to End Alzheimer’s. You can join our team or make a donation here. We will not cure my dad, and I will continue to write ‘POA’ after my name even when it’s totally not needed because I have just gotten that used to it. All the same, I’m pretty sure future generations will thank us if we can put this nonsense behind us once and for all.

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