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.

 

 

Death Cleaning

On September 16, 2016, I walked in to my mom’s hospital room to find her standing there in her hospital gown. Just standing there. She wasn’t on her way to the bathroom and she wasn’t heading back to bed, she was quite literally just standing there. She was not happy to be in the hospital and she wanted to go home.  

“What are you doing?” I asked her. As anyone would. 

“I’M PROTESTING,” she told me. 

“Oh. All right,” I said, and then we laughed and laughed. She remained standing because I guess the protest wasn’t over yet. I myself took a seat. She had no way of knowing it at the time, but she’d never see the inside of her house again. She died without ever going back there.  

My mom, by the end of her life, was only four feet, ten inches tall and maybe 95 pounds. She could be quite silly and funny at times. Other times, she was a tiny little fury of a person, irrational and angry and leaving no loved one unhurt.  She never understood her prognosis, which was: ten months if we’re lucky.  

We weren’t lucky. She got three. We cried. We cried more when our children cried. We had a funeral, we finished up paperwork, and when it was all said and done, we still had a job to do. Death Cleaning. 

Mom in her kitchen.

 

That same kitchen now.

It’s a real thing, Death Cleaning. From what I understand the Swedish came up with it, but for them it’s quite different than what my sister and I did. When the Swedish do Death Cleaning, they get rid of a lot of stuff while they’re still alive, as opposed to leaving it for someone else to do later, after they’re gone. It’s morbid and depressing but I still think it’s pretty brilliant. It’s the new Marie Kondo. I wish I could get my act together and do it in my own home, because clutter gives me heart palpitations and eliminating it would have to be so liberating. Soon. I promise. Very soon. 

In the meantime, there was Mom’s house. My mother’s main clutter was in the form of papers, tons and tons of papers. She kept everything, years worth of stuff, each document still folded and tucked into the business-sized envelope that it had arrived in. As for my dad, he kept everything else. Broken vacuum cleaners. Old eyeglasses missing an arm, and separately, the missing arms. Shortly after my mom’s death, my sister and I spent several days going through the house like vampires, laughing at some of the things we found and shaking our head at others, but ultimately sucking the life out of the place, one item at a time. It was devastating in a way that doesn’t seem too devastating at the time, but then you find yourself still thinking about it for months and probably years later. Our house. Their house. Our house. Ravaged as if by robbers, except we were the robbers. 

We never did clean it out entirely. I couldn’t imagine being there and watching a whole lifetime’s worth of possessions being tossed into a dumpster like so much garbage. So when I sold the house to some guys who were willing to take care of it for us, the relief was like a 40-pound concrete block no longer strapped to my back. They gutted the place before the closing even happened, renting dumpsters to get rid of everything we didn’t take. My mom’s books and makeup and stockpile of canned soup would have ended up in the dumpster, along with the furniture my parents had purchased new, back in the sixties. I guess the original green bathtub would have gone, as well as the note my mom had left for my dad when they still lived together: Ed – if you can’t wake me up, pick up the phone and press 9-1-1. Tell them you need an ambulance and give them this address. 

She wrote the address out for him, because by that time, he did not know it. I remember questioning her about that note. “Do you really think,” I said, “that if Daddy can’t wake you up, he’ll think to look around for instructions?” 

She shrugged. “Then I guess you girls should come over more,” she said. “To make sure he’s not living with a dead body.” 

Christmas, maybe 1979. My sister always took better photos than me.

I don’t think either my mom or dad would like how my sister and I handled their Death Cleaning. We were sentimental about plenty of things, sure. We took things, to remind us. But about plenty of other things – things which I’m sure one or both of my parents felt were nice or important or both – we said, Eh. Who needs it.  

And left it. 

I’ll go to see the house again, once the new owners have finished their renovations. I’m excited to see what it will look like, and I’m happy that someone is giving respect to the place. Treating it like it is worth something, like it’s more than just an empty shell that has seen better days. Like it’s a home. 

Because it was, and it is. I think, or anyway I hope, that my parents would be at least a little happy about that.