By now it’s not news that scientists at Case Western have successfully used a cancer drug to clear plaques from the brains of mice that were engineered to have Alzheimer’s, resulting in a reversal of rodent dementia. The hope is that this drug will do the same for humans. Here is a more in-depth explanation […]
The topic of fasting and Alzheimer’s has been on my mind lately because, well, Alzheimer’s is always on my mind and because recently a friend of mine got on this diet where you’re supposed to eat six small meals a day to trick your body into not storing fat. Since intermittent fasting has been shown […]
A curious thing happened to me on my way to finding the cure for Alzheimer’s all on my own: I gained more respect for drug research companies, for neurologists, for folks who are obsessed with theories and practically live in their labs trying to prove their theories. More specifically, I gained greater respect for drug […]
The Alzheimer’s Research Paradigm If you’ve every studied philosophy of science, you’ll recognize that current research in the field of Alzheimer’s Disease is battling paradigms. The funny thing is, the Alzheimer’s field hasn’t even reached the level of robust theory, yet there is strife in the ranks of researchers fighting over the direction inquiry should […]
Here is something frustrating about clinical trials of Alzheimer’s drugs: the FDA requires that such trials show an almost immediate improvement in memory tests of participants in order for the drug to get approval, disregarding improvement in other symptoms, and consequently derailing a possible cure for this dreaded disease. Here is why I think there […]
Another thing I got from Oliver Sacks’ book was a new notion of the power of music in dealing with dementia. My previous post on music and Alzheimer’s dealt exclusively with the notion of music as a memory stimulant. But Sacks’ book made me realize that music can be used as a tool to organize thought and action in the present—in the midst of neurological damage.
Yesterday as I lay down for a recuperative nap, I listened to a Scarlatti sonata in the background, and immediately got a visual sense of what goes on in the brain when music is played. The first picture that came to mind was an animation of DNA transcription: that funny little zipper head that makes a perfect copy of your DNA as it unzips the double helix. Nibble, nibble, nibble, copy, copy, copy. Then I saw Scarlatti’s sonata as doing the opposite with my thoughts: grabbing all the randomness in my mind and knitting it into a useful strand, or, if you want to be more esoteric, turning it into functional narrative.
In Sacks’ The Man Who Mistook His Wife for a Hat, the first clinical case is of a man who had lost all “sense of familiarity:” he could not recognize faces, body parts, food, clothing. Sacks wondered how the man (also a music professor) could function with this neurological deficit, so he went to visit him in his own home. It turned out the man had a very musical brain, and he functioned by humming a tune as he went about his daily business. He could eat as long as he sang, but if interrupted, would no longer recognize his food and would stop eating. He could dress by the same means. His wife would set out his clothes for the day, and he would only recognize them as clothes and dress himself once he started singing! His musical brain was compensating for his lost sense of recognition.
And now I remember a funny little entry by Bob Demarco on the Alzheimer’s Reading Room that is seriously brilliant. He talks about using music to stimulate his mother into action:
My sister was shocked when I told her on the phone that I finally “convinced” my mother to drink prune juice after years of trying and failure. Joanne was here and saw my mother refusing to drink and calling the prune juice poison. It was only after I introduced the “prune juice song” that my mother starting drinking the juice every day and the dreaded Poop-E problem was solved.
I also have the pee song, the poop song, and a long list of songs soon to be number one hits.
This is exactly what Oliver Sacks would have recommended! Music and Alzheimer’s (and Parkinson’s and most other dementias): stimulating the mind into action.
The following describes the knowledge gained by Sharlene in the course of caring for both her parents with Alzheimer’s. It is not necessarily a reflection of my views, but I thought it good to publish the research of someone who has an insider’s view of Alzheimer’s dementia.
Sharlene Spalding is a naturopathic consultant in the village of Casco, ME. She is a former primary caregiver for two parents with AD. She holds a master’s degree in natural wellness. Sharlene is an excellent resource in natural healing and a hound dog when it comes to research. Because of what she knows now, she is committed to a pharmaceutical-free home that revolves around organic foods and herbs. You can visit her website at The Village Naturopath.
The U.K. recently decided that Aricept and other acetylcholinesterase inhibitor drugs can be prescribed for mild Alzheimer’s cases (in addition to moderate cases. See article U.K. Reverses Stance On Alzheimer’s Drugs NICE is now recommending that three drugs known as acetylcholinesterase inhibitors—Aricept from Pfizer Inc. and Eisai Co.; Reminyl from Shire PLC; and Exelon from Novartis AG—be considered for use in patients with “mild” forms of Alzheimer’s, in addition to the patients with “moderate” forms of Alzheimer’s for whom NICE previously endorsed the drugs.). The more obvious reason is that these drugs should be getting cheaper once their patents expire, and therefore easier on the state’s prescription coverage budget. The less obvious reason is the relative ignorance Brits have regarding the sport of baseball.
First, you have to know how neurons and neurotransmitters work. Here is a short animation that shows how neurotransmitters work in the brain:
The cycle is a fantastically efficient one. Neurotransmitters are shocked into action, released into the synapse where they interact with receptors on the other side of the synapse, then swept up to make room for the next wave of neurotransmitters.
In Alzheimer’s, the favorite neurotransmitter tagetted by drug companies is acetylcholine because it is crucial for the formation of new memories. In the Alzheimer’s brain, there is an increasing shortage of acetylcholine, making it harder and harder for the brain to form new memories. The enzyme that recycles acetylcholine is acetylcholinesterase. What Aricept (an acetycholinesterase inhibitor) does is inhibit this recycling process, so the neurotransmitters hang around longer in the synapse and interact more often with memory-forming receptors.
Here is a video of a different neurotransmitter (serotonin) and its recycling inhibitor. It’s a good picture of the process that takes place with acetylcholine and acetycholinesterase inhibitors:
All of this is easier for Americans to grasp, because it can be compared to baseball: in baseball, players are stored in the dugout, called into action on the field, then recycled back into the dugout when their action is no longer called for.
Suppose that a team were to lose all but four of its players. Someone would have to block the dugout so the players wouldn’t sit back on the bench but rather take up the bat once more.
The players are the acetylcholine, the rule that sends them back into the dugout is the acetycholinesterase, and the person blocking the dugout when there is a shortage of players is the acetylcholinesterase inhibitor.
This also, by the way, illustrates why Aricept et al eventually fail: the four players get tired of playing the whole game all season long and quit.
Someone must have finally explained baseball to the Brits.
How much time is enough time? We know we are mortals and we know life is but a breath. In light of eternity, we calculate that 100 years passes as quickly as twenty. Yet, given anything less than 100, and we say we’ve been “cut off.”
My big, strapping brother-in-law lays in the hospital right now, fighting for each new minute after a two-year battle with brain cancer. He is tired, and he is ready to rest. We would prefer the doctors find a cure and make him bounce back, but we want to let him go.
Throughout this whole battle, Ken’s mind worked around his brain to bring humor and gratitude to his situation. He firmly believes God’s purposes can be worked through the worst tragedies, and it is amazing to hear how his concerns were always for the eternal perspective he could bring to the waiting room, the surgery room, the recovery room.
Ken’s life may be cut short in our view, but it has been a life well-lived, and that’s more than a lot folks can say. Socrates said that an unexamined life is not worth living; an anonymous person added that an unlived life is not worth examining. I can vouch for Ken that he’s had a life worth examining.
April 26, a.m.: Ken had a brain hemorrage last night and is on life support. Awaiting a family gathering to let him go.
April 26, 7 p.m. Goodbye Kenny. From someone who was present at his bedside: ” just wanted to write and let you know that Ken’s passing was beautiful in the midst of family and hymns and Scripture. The more that Daniel read and Ruth recited the easier his respirations…and soon he just passed on.”
We already miss your booming laugh, your exhuberant living, and your unwavering faith. Save us a place at the banquet table, and we’ll see you in the morning.
I saw an old friend yesterday and we caught each other up on our families. I told him I recently lost my brother-in-law to brain cancer. He said he was about to lose his sister to the same. Then he shared how his sister—who has a month or two left to live and is tired as can be—blurted out a couple days ago that “There are just so many fun things left to do.” No self-pity; no giving up despite the shortness of time. Her mind is winning over her dying brain.
I am deeply humbled by this woman’s attitude. I want to think like her—to take what’s left in the glass and drink it! Yet here I am with probably years left to live, claiming to be getting the upper hand on this Alzheimer’s caregiving business, but feeling devoid of creative ideas for living, for laughing, for loving.
I need help making a list. I have to have a bunch of small stuff, because the big stuff like going to a play or out to dinner or hang gliding don’t work with both parents. I just want some ideas for bringing laughter into our home.
To start, here are some little things that make Mom laugh:
Dancing for her with a feather boa.
Episodes of “I Love Lucy.”
Singing raucous songs loudly.
Pretending to eat her up.
Laughing babies (like this youtube one):
Here are some things that make Dad laugh:
Pretending to eat him up.
Episodes of The Colbert Report.
Mom when she’s in a funny mood.
And here are some new things I’m going to try:
Wear a fake mustache to the dinner table.
Spray whipped cream on Dad’s nose.
Put a fake snake or tarantula in the bathroom before Dad goes in.
Find a DVD of Victor Borge (like this youtube):
I’d love to hear your ideas, and I’ll leave you with this fun project: make a muppet like the one in the introductory picture above to add some fun to your Alzheimer’s caregiving.
Wait, here’s another idea: make these funky glasses. They crack everybody up!
All my life I considered myself an introvert, a private person, ungifted in the art of validating people.
In my early forties (a couple minutes ago), I bought a small restaurant, and all this changed. I grew by leaps and bounds in my fascination with people of all stripes and in my ability to dig beneath the surface and find the gold within. I grew in my ability to remember names, know faces, discover connections, and find new ways to validate people. I got high on it—on my ability to validate. It validated me in return.
Then one day this abruptly ended. I crashed. I had been working seven-day weeks for two and a half years, and my body and mind couldn’t take it anymore. The first scary sign of stress was when some of the music I played every day at the cafe lost its familiarity. I was evidently unable to learn new music. Then it was faces. New ones wouldn’t stick, and old but infrequent ones were a struggle to recall. I was filled with doubt when in conversation: what had we talked about the previous time? Did they just come from Europe, or were they going to Europe? I couldn’t remember.
Stress fried my brain, and my validation skills went with it. Nothing, but nothing hurt as much as having a newly-made friend appear and me not know who they were for ten or twenty seconds. The eager look on their face faded instantly, and nothing could bring it back. No amount of remembering in a few seconds would make up for my initial inability to validate them. I died a little bit every time it happened.
I wanted to resign from life. Retreat. Embrace my pre-cafe, introverted self. I wanted to be given a chance to explain (there is no such thing). I cried, prayed angrily, tried to bargain with God.
How do you love people when the principal organ of love—the brain—is shot?
I realized eventually that I was mourning my ego, not my lost ability to validate people—because I hadn’t lost the ability. I’d only lost the ability to do so in a way that would make me look good. There were and are plenty of opportunities to extend kindness and touch people’s souls even if we can’t immediately recall a face. It just takes an awful lot of something to give up the craving for reciprocity.This also showed me that validating was not my natural gift. To meet someone for whom it is, you must meet Jan Petersen. This afternoon I watched the video Jan’s Story: Love and Early-Onset Alzheimer’s again and re-discovered a true hero. Even with severe dementia, Jan knows how to seize each day and touch each person she meets. Jan’s is both a heart-wrenching and heart-warming story. Many people go through life mentally intact yet unable to see the goodness that surrounds them. Then you meet someone like Jan whose indomitable spirit sheds significance on everything and everyone she sees—regardless of her inability to name things.
The validation breakdown begins with us who think Jan’s story is nothing but a tragedy. But I tell you, if I could pick one trait to take with me on the dark road into oblivion, I’d pick Jan’s ability to validate without requirement; to love without strings attached; to milk each moment and each encounter.
That is the validation breakthrough!
Here are four more of my current heros—people with early onset Alzheimer’s who put themselves in the crosshairs of the stigma-tazers so they can help the rest of us see a little bit of the road ahead:
Mom has been pretty much without language for five years now. Three years ago she would occasionally call out “Ken!” (Dad’s name) once or twice a week, but other than that, her speech was a non-stop running chatter of “geri geri geri fica fica fica mao mao” and the like. Mostly two syllable experiments in sound. Ah. Also, occasionally–and as far back as 2 1/2 years ago, she would respond to the declaration “I love you” with “too too too too.” We wrapped ourselves in that response–a definite sign of comprehension and reciprocity.
Today we don’t even get the “too too too.” But we do get eye contact and a nod, which is just as good as sign of comprehension.
For all the times I’ve felt a thrill at the connection still possible with Mom via language, I didn’t have a picture of how thrilling it was for her to know that she knew something until one day–about 18 months ago–when I took her to the bathroom. We’d been having a very hard time getting Mom to urinate. She’d hold it for eight, twelve, eighteen hours. We massaged her, waited in the bathroom with her, gave her tons of liquid in hopes of getting her to release the contents of her bladder–to no avail.
One day I sat her down and begged her to go. “Mom, go potty. Let it out. Just let it out, ok?” She leaned over and made a shooing motion with her hand and repeated, “out?” I said, “yes, let it out.” She looked at the door, repeated the shooing motion (toward the door) and said “out” with the most excitement I’d seen from her in a long time. She was ecstatic at the small bit of comprehension she possessed at that moment. She knew the word “out!” She knew the word–it’s meaning–and it gave her significance.
I suppose it was akin to the feeling Helen Keller had at the comprehension of the word “water.” It opened up the world around her; gave her instant availability to connection with other human beings; empowered her to have a “self.”
I ache for Mom and her loss of language and all that has gone with it. But thanks to her, I am richer now that I know the power I possess with a vocabulary. Comprehension via language is such a huge gift (sorry to disagree, post-modernists)!
Now, if I can just stall the loss I already feel creeping in…
By now it’s not news that scientists at Case Western have successfully used a cancer drug to clear plaques from the brains of mice that were engineered to have Alzheimer’s, resulting in a reversal of rodent dementia. The hope is that this drug will do the same for humans.
Here is a more in-depth explanation of Bexarotene (“Drug Reverses Alzheimer’s Symptoms in Mice”):
Alzheimer’s disease arises in large part from the body’s inability to clear naturally-occurring amyloid beta from the brain.
In 2008, Case Western Reserve University researcher Gary Landreth, professor of neurosciences at School of Medicine, discovered that the main cholesterol carrier in the brain, Apolipoprotein E (ApoE), facilitated the clearance of the amyloid beta proteins. […] The elevation of brain ApoE levels, in turn, speeds the clearance of amyloid beta from the brain. Bexarotene acts by stimulating retinoid X receptors, which control how much ApoE is produced. …bexarotene improved memory deficits and behaviour even as it also acted to reverse the pathology of Alzheimer’s disease [and] worked quickly to stimulate the removal of amyloid plaques from the brain.
[T]he drug addresses the amount of both soluble and deposited forms of amyloid beta within the brain and reverses the pathological features of the disease in mice.
On the way back from the errand, I was no longer me but a dim-witten twenty-something boy, and the SUV was now a semi truck. I climbed into the truck and found that it was in such a tight spot that it would be nearly impossible to get the monster out and down the alley onto the street. Nevertheless, I managed.
From there on, driving home was a brink-of-disaster experience. Sometimes the truck would jacknife and tilt over and I would dangle from the window and the truck would almost fall on top of me. But it would always right itself just in time to not kill me.
I kind of lost my way home, and at one point drove the truck into a military building. Somehow the folks there mistook me for a war hero and ordered a police escort to get me home. I was too dim-witted to correct them.
I drove home never quite feeling in control, yet chortling the whole way—the cops behind me scratching their heads as they swerved to follow. I arrived home and STILL no one would act on the fact that I was not OK.
When I awoke this morning I had to laugh at my mind’s lack of subtlety. That definitely sums up life right now. This caregiving business feels like you are always on the cusp of something that could kill but ends up leaving you alive. Barely.
I especially got a kick out of the war hero thing—a commentary on everyone always saying “You two sure are wonderful. You are going to get huge rewards in Heaven!”Merrily merrily merrily merrily
Life is but a dream.
Today the world has been given the very bad news that there is nothing that can help prevent or slow the progression of Alzheimer’s. The disease is a thief and a murderer, and nothing can stand in its way.
I say the folks who did these studies need to study Mom. Round out the evidence of all that hopeless progression with a little taste of surprising regression.
I wrote the rest of this post a week ago, but only got around to publishing it today:
Mom is going backwards. She’s regressing, it seems to us, and that’s a good thing when you have Alzheimer’s.
How? What? When? Where? Why? Is it wishful thinking that we’re seeing marked improvement in Mom’s cognition, or is this real?
Exactly what I’m asking myself these days. Granted, being a highly motivated observer may make my observations suspect, but I feel it would be irresponsible not to report what appears to be clear evidence of improvement in Mom’s condition. It would be irresponsible of you not to suspect my findings, but dumb not to take a look at all.
So here goes.
A few weeks ago, we who have been taking care of (or been around) Mom for the past three years noticed that we were telling people Mom was having a good month. We were used to telling people that Mom was “having a good day” every now and then. A good day once a week was a good thing. But the entire month of March of this year seemed to be “a good day.” It came to the point that we were scratching our heads saying, “Hmm. Maybe Mom doesn’t have Alzheimer’s. Maybe this was all stress, and now that she’s been de-stressed for three years, she’s coming back.”
So I decided to take inventory of the new signs of cognition (and physical improvement) coming from Mom these days. What exactly is she doing that she wasn’t doing before? This is what I have:
- Mom has gained weight. Exactly a year ago Mom weighed 85 pounds and was bed-ridden with pneumonia. Hospice pronounced her a week from the grave. Today Mom weighs 95.5 pounds. No sign of physical sickness (OK, an occasional night fever and drippy nose).
- Mom sucks from a straw. For the longest time, we were having to “prime the pump” to get Mom to suck from a straw. A year ago, when we put a straw in her mouth, nothing would happen. So we’d plug the straw with our finger, then release the contents into her mouth, and, voila, she’d start sucking. Now Mom sucks as soon as the straw hits her lips.
- Mom opens her mouth at the sight of food. Again, for the longest time we’d just get a pleasant stare when we lifted a fork to her mouth. Two years ago, it would take us a good hour and a half to get through breakfast because it was only one time out of ten that Mom’s lips would part when we brought food to her mouth. Now, six-seven times out of ten, her mouth opens like a baby bird’s. Breakfast time has been cut in half.
- Mom swallows. Up until (this is where I wish I’d kept an exact diary) about four months ago, Mom had a permanent sore on the right side of her mouth. This was caused by the fact that Mom leans to the right when she sleeps, and food that remained in her mouth (because she wasn’t aware enough to swallow) dribbled out and ate at her skin. No matter how well we brushed her teeth and how much Vaseline we slathered around her lips, the sore was there off and on for the last three years until–a few months ago. The sore has not returned.
- Mom watches TV now. Meaning, she actually turns to it, focuses on it, and laughs on cue–sometimes for a 10-15 minute stretch. This hasn’t happened at all in the past three years until this “awakening.”
- Mom stops at the photo gallery in the hallway, looks at individual family photos and “comments.” For the past three years we’ve been walking through the hallway with Mom–past a 4 foot x 4 foot photo gallery–occasionally stopping to show Mom the family photos in hopes of getting a response. She wouldn’t even look where we were pointing. And if she focused at all, it would just as likely be on a knot in the wood frame as on a photo. Now Mom takes the initiative to stop and look from frame to frame, pointing, jabbering, looking at us and back at the photos. Sometimes getting teary-eyed at our description of the photos.
- Mom is using sentences. I wrote in a previous post that Mom’s language consists almost entirely of two syllable experiments in sound with an occasional word thrown in. We used to get so excited when she uttered a word that we’d call a family member and share the big news. In the past couple weeks, Mom has used short sentences. Like three days ago when I put her to bed, I said, “Mom, I love you.” She nodded and said, “For me, for me, for me too too.” The next morning at breakfast I tried to give her some juice while she was still chewing on her eggs and she shoved my hand aside and said “Put it down down.” I put her down for a nap in the afternoon, put on some Vivaldi, and did a farcical ballet dance (a la BodyVox). She nodded and said, “Yes. I do too too too.” Then that evening when I tried to give her her Seroquel (ground up in some juice), she shook her head. I kept bringing the juice to her mouth, and in exasperation she said, “Tsk! What what what do you do?” (Translation, “cut it out!”).
Four sentences in two days! Yesterday was a quiet day for Mom. No miraculous signs of anything. I’m dying to report more on this healing process, but Mom is not a science project, and I have to remember that she is worth all my love no matter what direction her mind and body take.
But I do think it’s worth mentioning that something has happened to Mom that has sent this Alzheimer’s into some sort of retreat. There is more than death taking place in her brain. Somewhere, somehow, regeneration is taking place as well.
Have any of you had the experience of watching a loved one with Alzheimer’s have a good month? I know Bob DeMarco recently reported an extraordinary event with his mother Dotty. Huge “regressive” step.
Next question will be, what could be causing these amazing regressions? We may have to rely on each other–the caregivers–to find the answer rather than on lab tests alone.
I took Dad for a walk tonight. It wasn’t a long walk. Dad was tired and didn’t really want to go. But he acquiesced to my prompting, and we walked to the end of the 50-yard driveway.
The whole time we walked, I supported Dad’s right arm. And the whole time we walked, Dad’s arm shook violently. By the time we got back, my arm was buzzed and aching.
Then it occurred to me that if Dad’s energy gets passed onto me in this bad way, perhaps we could harvest the energy in a good way. I suggested to him that we design something like the soccer ball recently invented by those Harvard girls—you know, the ball that stores the energy of a game’s worth of kicking into a battery that can then be used to light up the Third World.
But hey, why not harvest the energy generated by Parkinson’s tremors? Maybe we could even wire the energy back into the brain for deep brain stimulation therapy.
There’s got to be an up side to the down side of this energy-depleting disease!
Yesterday I asked my sister—who is visiting from abroad—what signs of Alzheimer’s she sees in herself. She rattled off some memory problems such as forgetting names of acquaintances or not being able to place someone’s face when out of context. Nothing particularly Alzheimersy, just decreased mental sharpness.
She then asked me if I was experiencing any unusual mental hyperabilities and went on to explain how she seems to have gained a fantastic ability to call up words she didn’t even know she knew.
Funny, I told her. I had this post saved as a draft when she asked me the question. The answer is yes, I’m experiencing this very same thing, and am curious to know if there is a name for it.
Is there such a thing as hyperphasia—the flip side of aphasia? The term hyperphasia exists, and it’s defined as an uncontrolled impulse to talk. But that’s not what I’m referring to. I’m referring to the mind’s sudden ability to pull up obscure words when common words won’t present themselves. Words so obscure that we had no idea we knew them.
I’m well acquainted with aphasia—the “tip of the tongue but it just won’t come” nature of language loss. I’m also familiar with another embarrassing result of gradual mental decline: the mind’s tendency to call up words similar in shape, but wholly different in meaning from the one the user wants. Try Googling “fairy schedule” next time you want to cross the Puget Sound to see what I mean.
But what is it called when the mind calls up unknown words that perfectly fit the context they were intended for? Does neurology study mental surfeits as well as deficits?
I told my sister that I’ve had arguments in my head over this new ability. One night, for example, I went to bed, and as I lay my head on the pillow a picture of our living room doorway came to mind, and with it the word “transom.” I immediately questioned myself:
“Transom? What’s that?”
“It’s the big piece that spans the top of the doorway, dummy.”
“How’d you know that?”
“I don’t know. I just know that it is.”
“You’re probably thinking of Hansom. And I think that’s a horse carriage, not a doorway.”
“No, I know hansom is a carriage. Transom is the door thingy.”
With that, I got out of bed and looked the word up in the dictionary: a horizontal crossbar in a window, over a door, or between a door and a window or fanlight above it
“OK, you were right.”
My sister laughed and said, yes, that’s exactly what goes through her brain.
So my question is, what is this newly acquired hyper-phasia called? And is it common to everyone as their minds begin to deteriorate?
Definitely my pick for the most practical gift you can give yourself or a loved one suffering from Alzheimer’s.
What’s your pick?
1. DELUSION. This is where you have boundless energy and think two lives are possible: one with you as caregiver, and one with you as successful entrepreneur.
2. FRUSTRATION. This is where you realize you have been delusional and have to make a choice between the two yous. The results are tress and guilt. Stress because your intentions are still lofty, but your body is getting tired. And guilt because you know you have to give up your own agenda, but want to keep it.
3. ANGER. This stage starts with resentment. You may start thinking part of what’s going on is on purpose—that your loved one is intentionally “pretending” some of the sickness. Or you think they’re not trying hard enough to cooperate with your care. You are in constant correction mode here, and getting angrier because your [barely] loved one keeps repeating the same frustrating behaviors (see Elder Rage).
4. DESPAIR. You finally get it that it’s not their fault. You accept that the disease is controlling your loved one and getting worse. You stop blaming them, and instead heap all the blame on yourself because you still think you ought to gain control over this caregiving business but can’t. Along with despair you have increased guilt and exhaustion.
5. RELEASE. In this stage you finally give up control. You realize you cannot do this entirely by yourself. You delegate care (maybe for a day or two of day care, maybe institutionalization). The result is considerably less stress; even joy; and certainly wisdom.
John Thorndike’s The Last of His Mind is a work skinned in the devastating story of Alzheimer’s, but shows what an unexpected gift caregiving can be for a child who longs to understand the one who shaped so much of his own understanding of life and relationships.
In these pages, John Thorndike gives up the comforts of his normal life in Ohio to care for his father in the last year of his battle against Alzheimer’s. John takes this time to examine himself in the light of the two people who shaped him most—his proper, emotionally absent New England father and his passionate, dissatisfied mother. “No wonder I study my parents,” he says. “Within the compass of their lives, everything is foretold.”
More than anything, the author wants a peek at his father’s heart, but finds it impossible to reach through the shining armor that encases him. In the end, though, he finds that it’s not his father’s armor that shines, but his character. And in the end, the year of loneliness and frustration yields the sweetest of fruit: a softer, mended heart.
John Thorndike brings out the True by exposing the Fraud, and it’s contagious. I feel wholly exposed after reading this book, yet more able to forgive myself, to love Dad—imperfections and all, and to accept the inherently flawed but courageous effort we all make in loving those closest to us.
True, this book is about the beastliness of Alzheimer’s, but it should be read by anyone who hungers to know a parent and to find themselves healed in the acceptance of an imperfect knowledge.
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- The Last of His Mind - Joe Thorndike, once the managing editor of Life and the founder of American Heritage and Horizon magazines, succumbs to Alzheimer’s
- The Myth of Alzheimer's - A doctor’s perspective on Alzheimer’s
- The Tangled Neuron - A Layperson Reports on Memory Loss, Alzheimer’s & Dementia
- The Brain’s Springboard to Creativity
- Citizen Science: Help Shed Light on the Brain-Gut Connection
- Getting Old With a Sense of Humor
- Living With The Jabberwocky
- Free Academy for The Aging Brain
- Water and The Aging Brain
- Best of the Web Nomination
- Bexarotene: Hope, Hype, Hooold It!
- Guest Post: I Wish I Knew Then What I Know Now
- The Brain: Divided We Conquer
- We are All Snowmen
- Does the Pursuit of Happiness Lead to Brain Aging?
- The Compulsion to Label
- The Myth of Alzheimer’s: Book Review