Managing the Decline: A Hopefully Not-Too-Depressing Book About Cognitive Decline, Dementia, and Other Cheerful Topics

By Alayna Smithee

Are your loved ones plagued by invisible child thieves?

Or maybe things aren't that bad. Yet. Maybe your loved one has just gotten a little forgetful. Like, they've forgotten to pay their taxes. For years. Or they're a lot more argumentative than they used to be, or you're noticing bruises, or they seem to be giving a lot of money away to a lot of strange people. . . . You're worried that your loved one is entering into some kind of decline.

Well, you should be worried! Pseudonymous rando Alayna Smithee is here to let you know that when your loved one goes into decline, things can really suck! She's also here to share what she hopes will help make things suck less. Every decline is different, but Alayna draws on the Smithee family experience to help you manage it—to prepare you for what may come, to let you know what to look out for, and to suggest how caring people should (and should not) work together to protect their vulnerable loved ones.

• Language: English
• Publisher: Alayna Smithee
• Release date: Apr 11, 2023
• ISBN: 9798215796849

Book preview

Introduction

Welcome to Managing the Decline: A Hopefully Not-Too-Depressing Book About Cognitive Decline, Dementia, and Other Cheerful Topics!

You’ll notice that this book is really cheap! Why is that? Well, I have no professional qualifications in this field—none! My name isn’t really Alayna Smithee, even! I only got interested in the field of aging and dementia 14 years ago—wow, has it been 14 years already?—when my own parents started to decline.

I am a caregiver for my mother, who for the purposes of this book I will call Ma Smithee. My father, Pa Smithee, died 13 years ago. Roughly a year before that, my sister, Sis Smithee, noticed that Ma’s memory was getting worse.

Because we Smithees are The World’s Most Functional Family, when Sis brought her concerns up to the rest of us, we all told her that she was totally wrong. Like, waaaaay off base! I mean, what an idiot!

After Pa died and Ma no longer had a spouse to prop her up, it became obvious that Sis was 100% correct—maybe even 1,000% correct, if that is possible. Ma Smithee thought she had paid her taxes, but she hadn’t. When we asked why she hadn’t realized that her taxes weren’ being paid, we discovered that she was no longer balancing her checkbook. Plus, without Pa there to look after her, Ma was falling prey to every slick guy in a suit.

But Ma wasn’t technically demented (more on that later), and she sure as heck didn’t want her kids telling her what to do!

A few years of nail-biting excitement later, Ma finally agreed to move to a senior living facility close to my brother, Bro Smithee, and far from her old home. A month after she moved out there, Bro—an athlete who had won an international sporting competition the year before—dropped dead. At first, Ma was able to provide much-needed help to Bro’s widow and child, but as time went on, her deterioration became more and more profound.

I helped as much as I could from a distance, taking over Ma’s bank accounts and stopping a bunch of scams. But the simple tasks of living—finding your keys in the morning, throwing out junk mail—became more and more overwhelming for Ma. She started to live in a delusive state, where some dude from the church we grew up in was running a gang of invisible children who came in through her walls at night to steal her things. (This particular dude currently lives some 1,500 miles away from Ma. To my knowledge, he is a decent fellow who has never run a gang of children for any reason.)

I moved to be near her, we got Ma into memory care, and here we are.

I’m a writer, so I cope by reading and writing. One of the things that has bothered me consistently over the past 14 years is the lack of a guide book. That’s not to say there aren’t books out there on dealing with aging: There are books about dementia, there are books on dying, there are books on palliative care.

Most of these books are fine.

(OK, some are not. I once read a book suggesting that burnt-out caregivers should attempt to grow spiritually! In addition to avoiding any book that implies grief and exhaustion stem from some sort of spiritual deficiency, I would avoid any book that claims some miracle supplement or food will end dementia. Diet can make a difference if there is a nutritional deficiency, but you need a real doctor to do a proper blood test to determine if one exists. As a rule, when it comes to cognitive decline and dementia, there are no easy answers. This is a field rife with scammers, so anyone promising easy answers is probably trying to sell you something.)

Some of these books are written by far more qualified individuals than me and are so good that I’ve listed them in this book’s Resources section.

The issue I had with even these books was that they didn’t address the wide range of problems I was dealing with, which (just to add to the complexity) changed all the time. These books were by specialists, and they focused only on the author’s particular area of expertise. Meanwhile, I was coping with what felt like a blizzard of ever-changing problems as first one setup and then another worked for Ma, and then failed.

This was, to put it euphemistically, challenging. I had to sit there and smile while Ma explained to her lawyer that, no, she didn’t want me to have medical power of attorney, because if she became incapacitated, I would leave her alone to starve in the cold and dark. I had Sis—yes, the same Sis who was the first to notice Ma’s memory problems—tell me that Ma didn’t need to go into memory care because she was lucid most of the time. I’ve had to deal with a social worker who lied to our faces about what our insurance covered and a doctor who wanted to repeat a treatment every six months that served no discernible purpose other than to stress Ma out and make her even more delusional.

It’s been a lot, is what I’m saying. I definitely feel like I’ve been thrown into the deep end of the pool.

But I also feel like I’ve learned how to swim. Not, you know, elegantly or anything, but I can pretty much keep my head above