A Fair Trade Book
Title: Creating Moments of Joy
Author: Jolene Brackey
Date: 2007
Publisher: self-published
Length: 327 pages
Illustrations: pen-and-ink decorations apparently by the author
Quote: “When a person has short-term memory loss, his life is made up of moments.”
This is a book about ways to go with the flow of Alzheimer’s Disease that make everybody’s life easier. Although Brackey apparently couldn’t sell the concept to a publishing house, in the field of geriatric care Creating Moments of Joy has become a classic.
So it must be a feel-good book, right? Wrong, I say. What I felt while reading this book was horror. If someone in your family definitely does have Alzheimer’s Disease, you may need this approach. That’s not to say there’s anything pleasant about dementia. And although I recommend the book, I’m going to share a warning that may mitigate the unpleasantness for some families.
What I find horrific about Creating Moments of Joy is that it’s being read by people whose elders do not, in fact, have Alzheimer’s Disease. Awareness of this disease pattern often causes people to anticipate progressive, permanent, complete memory loss when a patient is actually just reacting to medication.
By way of warning, I’d recommend that anyone who feels a need to read Creating Moments of Joy also read the last three years of the Ozarque blog (ozarque.livejournal.com), as long as it’s preserved online. Earlier years of this blog were a delightful read but here, toward the end, it becomes a valuable document of the other common pattern of dementia. Here you see two seventy-somethings, a writer and a non-writer, who are obviously more active, alert, and intelligent than many people half their age. Then they suffer a minor physical trauma that reduces their sense of security. Then they lose the son who’s been closest to them, who’s been empowering them to live in the Green and frugal way they’ve chosen to live. Then they let themselves be persuaded to discard most of their belongings and move into a smaller, more crowded, less congenial place, and the writer starts suffering from writer’s block. (Who wouldn’t?) And then, not as something that’s been gradually developing over several years but immediately after a medical test that required medication, the writer feels unable to write.
This is not Alzheimer’s Disease. Obviously there’s no way of knowing whether either or both of this couple may also have had Alzheimer’s Disease; whether, in the absence of all those life-change stress units, they might have developed permanent memory loss during the next ten years. Nor is there any way of predicting whether the blogger known as Ozarque will live long enough to recover her memory and concentration. But the kind of dementia, or disorientation, or whatever, that’s documented here is what’s called a breakdown when it happens to young people. Not only is it possible for some people to lose more of their mental function than Ozarque’s friends describe her as having lost, and recover most or all of it; it’s possible for young writers to make first novels out of it.
All of us need to be aware that, at any age and any level of intelligence, various disease and drug-related conditions can throw us into temporary states of dementia. As a geriatric nursing assistant I’ve gone into hospitals with patients who had no idea what had happened during the past hour—sat beside patients who woke up, every few hours, over several days, panic-stricken because they had no memory of having gone to the hospital. And sometimes, after two days or two months or two years of near-total disorientation, they recover. One patient seemed to remember everything up to having checked into the hospital for a minor surgical operation, but not having been kept there for a week.
So how do we know, after age 70 or so, whether a patient is displaying a drug reaction, a “breakdown,” or Alzheimer’s Disease? We don’t.
Naturally nobody wants Alzheimer’s Disease to strike oneself, relatives, or friends...and so, in what Positive Thinkers might call an example of their mystical “law of attraction,” I see some older people actively worrying themselves into breakdowns.
“Grandma aaalllways forgets where she’s put her keys. She must have Alzheimer’s Disease.”
Must she really? Funnily enough some people are “aaalllways misplacing keys” from the moment they’re considered old enough to carry keys. Did Grandma and Grandpa learn to make six copies of every key, and store one in each of the places where they look, when they were newlyweds? If so, then although Grandma may misplace keys more often as more distractions like arthritis, rheumatism, and the illnesses and deaths of friends come along, her misplacing keys may have nothing to do with Alzheimer’s Disease.
As my mother’s favorite R.N. with a specialty in geriatric care often says, when Grandma forgets what keys are, then it’s likely that she has Alzheimer’s Disease. Or else she’s reacting to medication in a way teenagers who live dangerously would describe as tripping out, or being stoned.
The trouble is that, by the time people reach age seventy, the people who notice them misplacing keys aren’t likely to be old enough to remember that they misplaced keys at age seventeen. And the last thing I want is to be relegated to “moments of joy,” or sedated to the point of living in them, while I’m able to deal with an ongoing sequence of ups and downs. Think about it. Do you feel the same way?
That’s the warning. Creating Moments of Joy can be a very helpful approach when someone really has lost all short-term memory...just don’t try to use these ideas with a patient who has not. Grandpa may be too confused immediately after an operation to correct you, and later he may be too weak, but if he does remember that you “lied” and “pretended to be” the long-departed cousin for whom he momentarily mistook you, how can he ever forgive you? This is a book to use very carefully.
When, and only when, you are sure that someone’s short-term memory is gone forever, then it becomes possible to relax and go with the (depressing) flow. It no longer matters what you say or do. The patient is incapable of reasoning and is most likely to be least dangerous, to self and others, when people play along with his or her delusions, so go ahead and say that you’ve milked all the cows (when the nearest cow is a hundred miles away) or that you are the long-dead friend for whom the patient mistook you. Some people use the “moments of joy” approach with malice, consciously ridiculing the person with dementia. Some people have tried it as an experimental therapeutic technique. Some, like Brackey, use it with the kindest of intentions, to smooth over one of the rockiest patches in life. When it’s used with good intentions this technique can sometimes accomplish good things.
Just watch for evidence of recovery. Sometimes, even when there’s been a long-term, progressive gradual loss of memory, memory loss has been a side effect of medication rather than an effect of permanent brain damage. A patient who has seemed senile for ten years can suddenly start storing recent memories, and recovering old ones, after a change in medications—especially if it’s possible to discontinue certain “relaxant” and “sedative” meds. No matter how far gone his mind has seemed to be, you want his first coherent, recent memories of you to be memories of someone who showed him due respect, not someone who “lied” to him.
Some specific techniques discussed in Creating Moments of Joy won’t be held against you, and may be appreciated, if a patient recovers her memory. A chapter called “White on White” recommends experimenting to find out whether a patient sees or reacts to different colors in different ways. If blue paint on the wall behind the white toilet helps Grandma see where the toilet is, and she recovers more ability to remember and understand what you’re doing, she might agree that painting the wall blue was a good idea. Making things easier to hear or see—or avoid hearing and seeing, if they’re unwelcome distractions—is not disrespectful.
How to tell where the patient’s mental functions are, especially if they fluctuate in reactions to food, medication, weather, etc.? Bookmark page 99: “[L]istening can be magical.” Whether the patient has Alzheimer’s Disease or not, this is always true.
Check out the prices on that Amazon link! During the time since I wrote this review, sold my physical copy of the book in real life (for $1), and posted this review, this book has definitely gone into the collector price range. One seller's best price for a used copy of the newest edition was $134! Jolene Brackey seems to be alive and blogging, so since you're going to pay more than the usual price for a used paperback wherever you get her book, you might as well buy it as a Fair Trade Book. I can offer it for $15 + $5 shipping, out of which Brackey or a charity of her choice will get $2.
