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.



The Residents

seniors-1505934_1280I was sitting with my dad the other day when he pointed at my foot. To be clear, he only pointed at one of my feet; the other, due to my position at that moment, was hidden from his view.

“That your bag?” he asked me, and I wasn’t the least bit confused because by now, I am quite familiar with his new version of language.

“You mean my foot?” I asked. “Yeah, that’s mine.”

“Huh . . . it’s nice.” A pause. “You should have two of them, though.”

My mother and I had a little chuckle at that. “I do,” I told him, rearranging myself so that both feet were in his sight line. “See? There’s the other one. Two feet, right here.”

“Ah!” he said. “Good. That’s nice.”

I had to wonder right then, as I often do, what exactly was in my dad’s head. I know what my normal dad would have been thinking. Jesus Christ, Mis – 45 fucking years old and I still gotta tell you this shit? You wear both your feet when you leave the house, you asshole! Then again, my normal dad would know that I generally take both feet with me everywhere I go.

Sometimes, it seems to me that my dad’s life might be like one long, weird dream. Like things are happening and people are coming and going but it’s all off somehow, and you’re aware of it all being off, but you’re also kind of not. I sometimes imagine that when he dies, it will be like waking up for him. “Oh!” he’ll say. “I had Alzheimer’s! Jesus Christ, no wonder everything was so fucking goofy there at the end!”

There’s another guy at my dad’s nursing home, I will call him Don though that’s not really his name. I get the feeling that Don thinks he’s at work all the time. He’s always walking around looking for the next right thing to do. He asks many, many questions, none of which are in any way answerable. One day he approached me carrying a clipboard with a sweatshirt wrapped around it. “Do you know what’s supposed to go on top of this?” he asked, pointing at the clipboard/sweatshirt.

“I don’t know. Let me see what I can find out.” That’s what I said and that’s the kind of answer I always give to Don. It seems to satisfy him, though not for long. Don lives in what appears to be a permanent state of anxiety, like a person who’s just realized they have a test they forgot to study for. A test in a class that they’ve forgotten to go to at all.

Annemarie is a resident who once told me, “I don’t know what they expect me to do. I don’t even work here! I’m just a volunteer!” My first clue that Annemarie was not “just a volunteer” came one day when she became very impatient with one of the other residents. “Will you just stop it?” she said. “How many times do I have to ask you?” I remember thinking, wow. They should really train these volunteers better on dealing with people with dementia. I’d have mentioned it to one of the staff, if I could have found someone, which I couldn’t. Which just goes to show you, sometimes things work out for the better even when it seems like they’re not.

Eventually I realized that Annemarie was there every time I was, and that she had a room across the hall from my dad’s. Her name is not Annmarie but that’s what she looks like to me. She’ll tell you she’s just there to keep the patients company. “I play cards with them, color, you know. Whatever they want.” This is what she really, really believes, and I for one am happy for her.

As for my mother, well, she lives there now, too. Not in the same room as my dad. Not even on the same side of the floor, since she doesn’t have any form of dementia. Instead, she has lung cancer, and a brain that’s more or less intact. I haven’t talked about her much because, I guess it’s easier to write about a person who has Alzheimer’s and will therefore never read what you write and call you an asshole. My mom loves the food there and has a very lovely roommate who watches the same TV channels that she likes. Still, you could take a machete to her misery and never cut your way through it. Meanwhile, Annemarie is over there “getting married” to the new guy on the floor, which is surprising because he always seems very angry to me.

I guess what I’m trying to say is that I look at all these situations and I wonder which is the worst, as if that makes any difference whatsoever. As if my sympathy and compassion are limited quantities, and I need to decide how to parcel them out fairly. Or, as if one day, I’ll get to take my verdict and use it to choose my own preferred exit strategy. Dear God, I guess I’ll take Alzheimer’s. But only the kind of Alzheimer’s where I become sweet and kind and people dote on me, not the kind where I walk the hallways like that one lady, telling everyone that this is hell. Also, not till I’m at least in my 80’s. And please put me in a nursing home where the food is pretty good and my false teeth won’t get stolen and the nurses give me a set of keys to carry around if it makes me feel better. Or, on second thought, let me just keep my real teeth so that dentures won’t be a concern. Thanks.

Oh, one other thing. And this is kind of important. Please make there be a patient with a kid who writes things down, and when she writes about me have him or her make me a charming character with a wardrobe full of Mrs. Roper dresses. I should be the most pleasant one on the unit, if that’s possible. And when I die suddenly one day in my sleep, everyone should feel sad, but not too sad. Because really, I’ve just woken up.