Here's a fun little fact about joint caregiving: it can turn a tiny disagreement into a full-blown I'll-move-to-the-North-Pole and you-move-to-Antarctica fight. The constant demands, the inability to comprehend half of those demands, the lack of time off, lack of perspective and sundry other issues will wind the coil so tight that a slight breeze or feather of conflict between those sharing the caregiving responsibilities can cause a mighty painful snap.
Funny how that commercial for Pristiq antidepressant gets it wrong. The last thing in the world we Alzheimer's victims (on both ends) need is a big old hand winding us up even more! Yikes! A better image would be seeing that key spin in the opposite direction, letting that purple-clad lady relax completely. Now there’s a pill I'd buy!
It’s ads like that that take me back to Princess Bride and Wesley’s pronouncement: "Life is pain, highness! Anyone who tells you otherwise is selling something." A lot of people have to put up with a lot of pain. It's not just us.
So perspective helps some.
Here are some other things that help:

• A good cup of coffee in the morning
• Music (it's amazing how music can change the mood)
• A five minute sit on the porch
• A hot shower
• A good cry
• Painting
• Blogging
• A long primal scream

Deep In The Brain is a cerebral self-examination written by a philosophy professor who was riding the top of a success wave when he was diagnosed with Parkinson’s. Talk about the relationship between mind and brain! Here is one who, thanks to his training, steps outside himself to make an objective assessment of his behavior even as he battles the attachment he has to that self.
In this book, Helmut Dubiel analyses his response to the personal and social implications of his Parkinson’s disease. He does not blame or excuse. Rather, he tries to put his and other’s reactions in context of the overarching laws of social interaction.
There is pain in this book. There are lies and pity and anger and judgment. But mostly, there is acceptance of the facts of disease and an acknowledgement of man’s irrepressible will to live and to thrive.

Yesterday as I read this book to Dad, I noticed him fidgeting more than usual. I stopped and asked him what was the matter. He said, “It seems like you’re reading about me.” I explained that this was a philosophy professor writing about himself. Dad calmed back down and listened with interest. Dad doesn’t talk about his inner battles much, so this would logically be painful for him. But good. I think this was one of Professor Dubiel’s hopes-that through his honest self-examination, others would feel released from the need to hide from their disease and, in so doing, find relief.

I’ve often asked people, “Which would you prefer: to lose your body or to lose your mind?” Given that I live with one parent with Alzheimer’s and the other with Parkinson’s, this question has personal weight. In his book, Professor Dubiel clearly expresses his preference for holding onto the self despite the ostracism brought on by the physical distortions of Parkinson’s. Knowing you are being unfairly rejected is still preferable to knowing nothing at all. On the other side, in Still Alice the protagonist affirms this appreciation for the self when-in a lucid moment-she acknowledges “I didn’t meant to get this way. I miss myself.” The mind is a far greater gift than the body.

Of course, in the end, Parkinson’s takes the mind as well.

My take-away? Pray for a cure for both diseases; forgive my and others’ shortcomings; enjoy today.

On Saturday, August 21, 2010, God took Dad home. God did not wait until we were ready for this. He waited until Heaven couldn’t stand Dad’s absence any longer.

I’m posting this video about how we deal with death in our current culture because I think our attitude of denial in the face of death needs to change. Considering my family’s immediate reaction of trying to revive Dad-even though he requested a DNR-I’m speaking from experience. Our natural tendency is to hold on as long as possible. But this isn’t necessarily the best for those we love.

Letting go is so stinking hard!!
All the more reason to think and plan ahead for the death of those you love.

We already know that a Mediterranean diet helps stave off signs of dementia, but who wants to eat flavorless vegetables all the time?
If you think you have to sacrifice that deeply satisfying taste of butter and meat that you don’t typically get in a vegetable-rich diet, you don’t know Yum Sauce! This sauce is of Japanese origin and is full of protein, B-complex vitamins (B1, B3, B6, B12), and antioxidants—and best of all, it rounds out the flavor of anything you put it on with a “meatiness” that will satisfy the carnivore in you.
The dish pictured here is a prime example of a Mediterranean diet with a Japanese twist: a bed of baby spinach leaves with sauteed butternut squash, topped with Yum Sauce. Use this sauce on any steamed vegetable, over rice, or even on salad, and you’ll be on your way to fighting memory loss!

Throw everything in a blender and puree until smooth. Store in a refrigerator for up to one week.

I found this short documentary film yesterday while browsing another blog about Alzheimer’s. It’s in French with English subtitles and you can watch it for one euro online. Worth the euro and then some (you can click on the picture to go to the website). The film is done by the son of an artist with Alzheimer’s, and the documentary marries his own artistic and filial sensitivity well.
As an artist whose artistic mother also has Alzheimer’s, this movie hit home for me. It was like watching my own mother lose all her nouns, then her knowledge of interpreting nouns on a canvas, and finally her knowledge of self.
In this film, the mother’s sorrow and fear are mitigated by the son’s desire to hang out with her. I only hope his desire lasted beyond the making of the film. For the sake of all those with Alzheimer’s, I hope love lasts beyond the time the disease is an interesting artistic or scientific curiosity. I hope it lasts beyond the time a diseased person has anything at all to offer.

Rose Lamatt recently sent me her book Just a Word: Friends Encounter Alzheimer’s—the true account of her best friend’s rapid decline after being diagnosed with Alzheimer’s, and of the author’s life as a caregiver. After reading (or should I say “crying”) my way through this book, I decided I had to recommend it to all my readers as well.
I read and liked Still Alice, but it doesn’t hold a candle to Just a Word when it comes to describing the wretchedness of Alzheimer’s and of caregiving and of life in a nursing home after home-based caregiving is no longer an option. Just a Word may not be as polished a work as Still Alice (my editor’s eyes kept making corrections until the story sucked me in), but this book will give you the real thing: Alzheimer’s with poop and bruises and the constant anguish of those trying to love and care for its victims (unlike the sanitized version in Still Alice).
In all my reading on Alzheimer’s, I have not found anything so powerful as this book to stir a desire to rid this disease from the face of the earth!

The first thing you have to know about Mom is that she is the biggest sweetheart on the planet. She has always said “yes” to anyone who asked her for a favor or a meal or a ride or even cash. We used to berate her over some of these decisions. “Mom, you’re just enabling them to go get drunk,” or whatever. We’d rather keep our boundaries intact. Keep safe. Not Mom. She’d rather “do onto others” as Jesus wanted her to do-and let Jesus take care of punishment if the recipient abused the gift.
With that in mind, it puzzles me that these days, the word most frequently pulled out of her tiny residual vocabulary (5-10 words at present) is the word “no.”

“Mom, shall we get up?”
“No.”
“Mom, isn’t this music pretty?”
“No.”
“Do you want to go for a walk?”
“No.”

Here’s the curious part. Her body language still says “yes.” So why the verbal “no”?
I’m thinking that this knee-jerk negation is her last recourse to individuality. Having lost most of what makes her a person, she is resorting to negation as a way to distinguish herself from others.
Think about it. “Yes” blends us into other people. It’s a unifying word. It accepts. It serves. It hugs and becomes one with the other.
“No” on the other hand, puts up a wall between the self and the other. It says, I am me and you are you and it’s going to stop there.
It’s Mom’s only way, I believe, to retain a feeling of self.
And that revelation changes how I look at the world. You wonder why some people just can’t play nice in the world arena; why they have to say “no” to constructive engagement; why they have to strap bombs around themselves and “no” themselves and other people into oblivion.
Perhaps it’s because those people feel that a “yes” will blend them into the will of the other-a will that is unacceptable to their idea of a healthy self. A “no,” they feel, is the only way they’ll be seen.
Do you see what I’m saying? The ego’s boundaries collapse under yes. “No” is the last bastion of the tormented ego.

A couple days ago a friend of mine called almost in tears: “I did such-and-such, and I’ve never done such-and-such before. Do I have early-onset Alzheimer’s?”
I laughed. “The thing about Alzheimer’s,” I said, “is that they say not to confuse normal aging with Alzheimer’s, and then they say Alzheimer’s hits long before any recognizable symptoms become evident, so you have to look for signs early on.”
So I want to know: are we to be concerned about Alzheimer’s as soon as we lose our keys for the first time, or should we just laugh it off and look at the bright side of life all through the aging process?
Recently, a new mini-test was developed for the easy detection of Alzheimer’s. It’s called the AD8. This 8-question test is supposed to bring a diagnostic tool into the hands of primary care doctors so that Alzheimer’s can be detected earlier and therefore treated more effectively.
The problem is, there is no effective treatment for Alzheimer’s yet. So what, pray tell, are we doing finding new ways to diagnose this disease when there is no treatment and when the disease itself is not even clearly defined?
When we first brought Dad to live with us, we set him up with a primary care doctor who ran him through the standard Alzheimer’s test: remember these three things; tell me the date; where do you live; what floor are you on; draw a clock that says three thirty; etc. Dad got every single question wrong, and the doctor proclaimed, “You don’t have Alzheimer’s.”
I wanted to laugh. I think it was relief that a doctor would buck the system and refrain from offering perhaps a true but useless diagnosis given the lack of any effective treatment.
Later, we took Dad to a neurologist who got through three of the standard questions and suggested he try Aricept.
We gave Dad the five-week trial supply. It profited him nothing.
I’m not saying that we should refrain from diagnosing diseases. From his neurologist Dad also got a diagnosis of Parkinson’s, and as I’ve pointed out in an earlier post, this diagnosis (though it came late in the progression of the disease) was tremendously helpful in understanding Dad’s behavior and in relieving his sense of guilt. The medication he took for Parkinson’s did him no good either, but the diagnosis itself was helpful—perhaps as much for us, his caregivers, as for him.
But Alzheimer’s is a tricky beast. There are some well-known Alzheimer’s victims like Richard Taylor and Dottie (of the Alzheimer’s Reading Room fame) who are now under fire as possible Alzheimer’s mis-diagnoses. How can anyone have Alzheimer’s for six or ten years and show no decline, or even show improvement over time? It is not the subject’s truthfulness that is questioned but the accuracy of the initial diagnosis (heaven forbid we should think Alzheimer’s can be stayed by sheer willpower—of the sufferer and/or caregiver. That would mean we don’t really need expensive meds).
Is diagnosis of value when there are so many causes of dementia that could result in a false positive? And are the statistics of any value when they are repeatedly misquoted? We keep using the phrase “there are 5.3 million Americans with Alzheimer’s” when the correct statistic is “5.3 million Americans with Alzheimer’s and other dementias“.
One last bit of datum against the usefulness of Alzheimer’s diagnoses: in the U.S., whites tend to get diagnosed and treated more frequently than Hispanics, African Americans, and Asians. Whites seek out professional medical care, while Latinos, African Americans and Asians with Alzheimer’s tend to stay home and be cared for by family. Yet whites with Alzheimer’s die sooner than their non-white counterparts.
If earlier diagnosis is helpful, where is the evidence?

Yesterday Bloomberg Businessweek published an article titled Mouse Study Suggests Alzheimer’s-Linked Protein Can Migrate Into Brain.
The story is this: researchers took brain matter from mice that had beta amyloid plaque (were genetically modified to have such plaque), injected it into the stomachs of normal mice, and months later found beta amyloid plaque in the brains of the normal mice.
If all you read is the headline of this story, the conclusion is that the beta amyloid from the sick mice got into the bloodstream of the healthy mice and passed through the blood brain barrier to take up residence in the healthy brains.
But if you read to the end of this article, it is suggested that there could be all kinds of reasons the healthy mice ended up with beta amyloid plaque in their brains, such as maybe there is some chemical in the plaque brain sample that passes through the blood brain barrier and causes a chain reaction that produces beta amyloid plaque—which would negate the headline altogether.
Now, watch the news and see how many people with take only the headline of this story and pass it off as scientific fact.

The moral of the story: be careful what you read and how you read it.

Yesterday I finished reading Still Alice. I think the title is meant to be a loaded question. Can I, after losing all memory of others and self, still be considered to be myself? Am I still “me” if I don’t have a clue what that me is or was?
The fictional book answers the question affirmatively.
I found myself examining my perceptions of Mom-who obviously no longer knows herself-and thinking the conclusion was absolutely true. I still recognize Mom in this shell of a person. She still has the same mannerisms, exudes the same kind affection, displays the same funny reactions. She’s still Mom down to the core.
But not so much with Dad-a victim of Parkinson’s. It seems I recognize him less and less. But then, I suppose I’m holding a higher standard of “self” to Dad, giving that I’m assuming he’s more “there” than mom. If I were to strip him down to mannerisms alone, I would probably find him to be his old self too. It’s a tricky question.
At the very end of the novel, Alice has a moment of lucidy and says, “I miss myself.”
That statement struck me to the core. You know why? Because I miss being me too! There is this incredible longing inside me to be “more” or “better” or “fuller” or something. I fall way short of the me I want to be, and I long for (or miss) that. Yet I still want to be treated as though I were fully “me” even though I don’t meet my own standard for myself.
Why not, then, treat the Alzheimer’s victim as though they were fully themselves, regardless of how short they fall from the perfect version of that self?
Ultimately, our longing is for acceptance, love, safety. Let’s just make a pact to offer it unconditionally to each other regardless of where we are on this journey toward the perfect self.

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Alzheimer’s and the Ego: the Power of No

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:

Good news!

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.

After writing my last post regarding the stress of caregiving, I had to drive somewhere, and in the course of the short trip, I caught a clip of a Haydn symphony on the radio. I don’t know how, but there are sections in there that make me feel as though this exhausted, shriveling heart of mine is actually quite expansive and able not only to cope, but to bring beauty out of the brokenness around me. You know how sometimes you see a scene or a photograph that makes you certain that the universe is true and right and good? Well, music does that, but with thrice the emotion. Music can rewire a frazzled or finished outlook into one of hope. And hope can take you a looooooong way down a very dark road.
All to say that music—in addition to being a fantastic tool for treating Alzheimer's—is a very inexpensive way to get your groove back when you’re done in from caregiving. Or from living a regular life-is-pain-highness kind of life.
To prove this, I'm giving you a little tool in this post that some people may not know about. The tool is called Pandora—an internet service that lets you create your own radio station online.
The extra cool thing about this service is that you can create multiple radio stations, all with different moods—colored by different genres or artists—to suit your changing needs. Sometimes I don't even know what my need is or what it is that will trigger a brighter outlook, so having multiple "moods" to choose from is very useful.
Cutting to the chase, here are four stations I created to get you started. Click on any one of them and follow instructions to log into Pandora. From there, you can tweak the station by "adding variety" (a specific music piece or musician) to the station. You can also "thumbs up" or "thumbs down" any piece that you hear, and the station will remember to pick similar music or not to play that piece in the future. Talk about tailored just for you!
So here goes—four different flavors for your listening pleasure:

Jazz. You know, the good stuff with Stan Getz and Louis Armstrong and Bobby McFerrin and Michael Buble…
This is a fusion of old hymns and contemporary Christian pop. Nice, especially for Sunday mornings.
My personal favorite: spicy Latin mix. Makes you want to jiggle and dance and go crazy! A great stress-reliever.
Classical is music to transport the soul.

A couple more tips: if you want to play this music off your sound system without leaving the kitchen table, you can buy a $4 wireless FM transmitter and send the station to your main tuner. You can also "send the station" to the radio that sits on your mother's side table in the bedroom while you’re working on the laptop in the kitchen. Just a whole lot of things you can do with Pandora!
Do have fun, and come back and post a station of your own creation if you dare!

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 is an inherent problem with this guideline:
If you go the the Alzheimer’s Association website and take the interactive tour of a brain with Alzheimer’s (a fantastic tool!), you will notice that there is a general pattern to the progression of Alzheimer’s and its accompanying symptoms. Specifically, looking at slide 13 you will see that the first part of the brain to be affected by Alzheimer’s is the inner core where the hippocampus resides—that part of the brain responsible for short-term memory. From there, damage spreads outwards to the cortex of the various lobes. As the second image in slide 13 shows, the Frontal Cortex is affected in mid stages of Alzheimer’s. This area is responsible for attention, social skills and intelligence (or wit). It is associated with “personality.”
Now, if an effective drug for Alzheimer’s were to be developed, you would expect to see the least damaged areas respond first, followed by the most heavily damaged areas.
Such were the preliminary results of the clinical trial of Dimebon. In reading the various anecdotal accounts of the Dimebon trial (see Bob DeMarco’s piece on the Alzheimer’s Reading Room), the results seemed to show precisely this initial response: Alzheimer’s sufferers reported increased alertness, social skills, and wit. Here is a sample quote from the various testimonials:

The major drug companies are focusing on memory. Are they after the right target? I’ll tell you this, in weeks 6 through 18 in the Dimebon clinical trial my mother was more engaged with me, more aware of her surroundings, more interesting, and more like her “old” self then she had been in six years.

The least damaged areas of the brain were affected in the 12-week trial! Then the trial was stopped because the inner (most damaged) area of the brain showed no marked improvement.
Would it not make sense to glean from the trial that a logical reverse course of the disease was set in motion and to continue it to see if the pattern held?
Pfizer et al, could you give us another 12 weeks when studying Alzheimer’s please?!

[Note: this analysis is mine alone. It may not be true that the least affected areas would show improvement first]

The other night I watched the movie Limitless. I thought it was a typical heart-pounding thriller with a touch of fantasy—in this case about a guy who discovers a drug that turns him into a genius. I thought the plot was moving toward the inevitable crash he would suffer when his supply ran out (as happened to everyone else in the movie whose supply ran out).
Then came the twist at the very end that made me laugh out loud. OMG, what Pretty Woman was to prostitutes, Limitless is to drug addicts and the whole drug industry.
If you’re smart enough, it says, you can make the perfect brain drug; you can take the last dose of the perfect drug to a lab and figure out how to reverse engineer and reproduce it; and you can figure out how to tweak it downwards in a perfectly safe manner (all within very short time periods); then you can wean yourself from a phenomenally addictive drug; and finally, you can train your brain to retain all the benefits of said drug once you have weaned yourself off it.
HA HA HA HA HA.

I think the whole problem I have with the drug industry is that, except in this extreme pharmacofantasy, it is additive rather than subtractive. You add one drug to treat a condition, then you add another to deal with the side effects of the first drug, then you add an nth drug to deal with the side effects of the combination of all the previous drugs.
Why not start with subtraction?
What are we injesting that we should cut out? Sugar? Preservatives? Smoke? Alcohol? Pesticides?
How often/much are we eating that we should cut back? Are we inhibiting certain enzymes—such as the anti-aging SIRT1—that only activate during fasting hours?
Maybe less is more?
Let’s start by removing the offending substances first, because once you start adding, it’s not you who benefit. It’s the industry that initially did have your brain in mind but now needs you to need them more and more.

A couple days ago we had a March Babies birthday party here at the house. It’s a tradition my sister started a few years ago because so many of her friends have birthdays in March, and this is a great way to kill a bunch of birds with one shotgun.

As I was sitting listening to our various conversations around the table, something struck me as different this year. We’re all hovering around 50—give or take a couple years—and the aging process is beginning to take a more prominent seat at the table. Not only do conversation topics start with the premise of aging: declining health, the cost of health insurance, etc, but it seems that no matter what the topic, it eventually touches on something to do with aging.
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