Today a nice physical therapist came to assess a treatment program for Dad—to help him regain his balance and mobility and in so doing help him milk the summer ahead of us.

A couple hours later, while sitting at the table Dad asked me in an unusually clear voice, "What's the agenda?"

I looked up from the computer, slid my glasses down, and asked back, "Agenda for your physical therapy?"

"No."

"Agenda for life?" (I thought I’d go for the gusto).

"Yes." He smiled.

"Ah. Well. The agenda for life is to live more fully. You are going to get back to being more fully you. We are going to visit the local museum, go see the natural wonders around us, go to the big city to check out the OMSI exhibit."

He smiled more broadly. We're on the right track.

Shoot, this Parkinson's is going to be a nuisance, but we are going to live one shaky bite, one shuffling step, one tough lesson, one adventurous ride, one grateful day at a time.

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…

Water and the Brain

Here’s what I found about dehydration and the aging brain:
Not much—unless you count articles on websites trying to sell water filtration systems.
The fact that water makes up 70-80% of a nerve cell and transports both nutrients and wastes from neurons means it is essential for proper brain function all through life. That’s a given. What’s not a given is how much a brain has to be depleted of water to affect cognition.
Rigorous research on the topic of the brain and dehydration is limited. Even the “standard facts” about the body and water are all over the place: babies come out of the womb composed of 90% water; no, 78%; no, make that 70%. In adults, the proportion is 60% water for males and 55% for females. The consensus is 50-60% for adults in general. The brain is 60% water; nay, 90%. Whatever.
As for how much water you need to drink on a daily basis to be properly hydrated, oy, there is no consensus. For years I’ve been hearing “8 cups a day.” No allowance for a sedentary life or for someone with a diet of fruits and vegetables (which are high in water content); no penalty for eating junk food (which would increase the need for the detoxifying properties of water) or for spending days cooped up near a wood stove.
One article quoted the Mayo Clinic as saying that “the average adult loses more than 80 ounces of water every day through sweating, breathing, and eliminating wastes,” and therefore you’d have to drink 10 cups of water/day to rehydrate. I searched for the quote on the Mayo Clinic site and didn’t find it. Instead, I found a recommendation for 6-8 cups of water per day.
Suppose you take the most conservative recommendation of 6 cups per day–do you follow that? I don’t think I’ve ever gone one whole week drinking that much per day.
It has been estimated that 75% of Americans are chronically dehydrated. OK, that figure is questioned. But it seems to be a fairly hard fact that “among people over 65, dehydration is one of the most frequent causes of hospitalization.”* Understandable: throw in a bit of incontinence, and fear of hydration soars. Also, some medications are diuretics, and after 50, the body loses kidney function and is less able to conserve fluids.*
But how bad is dehydration for your brain?
According to Lumosity, when your body lacks water,

brain cells and other neurons shrink and biochemical processes involved in cellular communication slow. A drop of as little as 1 to 2% of fluid levels can result in slower processing speeds, impaired short-term memory, tweaked visual tracking and deficits in attention. With proper hydration however, neurons work best and are capable of reacting faster.

But pinning down the exact link between hydration and cognitive function is tricky in the lab. From Hydration and Human Cognition:

Although adequate hydration is essential for optimal brain function, research addressing relationships between hydration status and human behavior and cognitive function is limited. The few published studies in this area are inconclusive and contradictory. The impact of variations in hydration status, which can be substantial as humans go about their daily activities, on brain function and behavior is not known and may impact quality of life.

From PubMed’s Hydration and Cognition: a Critical Review and Recommendations for Future Research: “The limited literature on the effects of dehydration on human cognitive function is contradictory and inconsistent.” The monkey wrench in research here is given as confounding factors:

Confounding factors, such as caffeine intake and the methods used to produce dehydration, need to be considered in the design and conduct of such studies. Inclusion of a positive control condition, such as alcohol intake, a hypnotic drug, or other treatments known to produce adverse changes in cognitive performance should be included in such studies. To the extent possible, efforts to blind both volunteers and investigators should be an important consideration in study design.

On the Mayo Clinic site, a Dr. Lette finds that “there’s no scientific evidence that drinking large amounts of water is good for one’s health.” The recommendation in this article is to drink when you’re thirsty, and that’s enough.
My question is, does the lack of scientific evidence mean there is no scientific proof or merely that there is no motivation to research the topic to obtain the evidencef? Who, after all, would fund research into water being fundamental to the health of the aging brain? Not the pharmaceutical industry. If you could avoid dementia by being continually hydrated, you wouldn’t need pills to fix dementia. Why would any self-respecting drug company fund that finding? And if it takes a lot of money to work through all the confounding factors, who’s going to pay for it?

The thing is, when the anecdote about my sister-in-law’s mother is not even rare, it makes me wonder how many cases of Alzheimer’s are checked for a history of dehydration. I don’t mean just the over-the-weekend kind of dehydration, but long-term, chronic shortage of water.
As with Mom. The list of things Mom was doing “right” for her aging brain is stellar: she was highly educated, spoke multiple languages, was given to prayer and meditation, was active in the community, etc., etc. Yet she succumbed to complete dementia in her early seventies! Could it all have been due to her severe distaste for water? I mean, she hated water–would gag if she drank it straight from the tap. Could her present dementia have been prevented by a regimen of 4+ cups of plain ole water daily?
I hate to look at the “what if” from Mom’s point of view, but for our generation and beyond, it needs a good deal more consideration than we’re giving it.
What do you think? Am I grasping at straws? (I suppose that’s OK as long as the straw is propped inside a nice glass of water, right?).

Resources:
Water and Brain Function
Water in the Body”
You’re Not Demented, Just Dehydrated
Dehydration and Cognitive Performance
Hydration and Cognitive Function in Children
Nerve and Muscle Cells
Impaired cognitive function and mental performance in mild dehydration

This week I started wearing the monovision contact lens that I got three years ago. This is the lens that you wear in one eye to correct for reading while leaving the other eye free to focus on things in the distance.
I tried this lens years ago but found it unacceptable. Everything was at once blurry and sharp, and I couldn’t tolerate the tiniest bit of blur in my vision.
I realized it was a mental adjustment—I would have to learn to choose the sharpness of one eye over the blurriness of the other at any distance until all I saw was sharpness. But I was impatient and gave up on the adjustment period, resorting instead to donning and doffing reading glasses when in need.
Now my close-up vision has gotten so bad that when I tried the monovision lens this time, my mind was quite happy to accept the gift of semi-sharpness without the need to scout around for glasses. It took a very short time, in fact, for my brain to adjust and see all things in focus at all distances.
Remarkable how the brain can do that.
I learned a similar lesson in life with the attitude of gratitude. I was going through a very stressful, heart-rending period when nothing seemed to be “working” for me. One day I plopped down on the floor and began to say “thank you” for every part of my life. It was a turning point in my stress level. I began to see not problems but challenges; not curses but blessings. And what a difference it made!
Alzheimer’s and other devastating diseases, I’m noticing, can be lenses that change the way we see life; they change what we think is important; they bring into focal clarity the gift of family, friends, community, connection. I’m amazed as I surf the blogs written by sufferers and caregivers to see the softness that takes over when anger ends. I’m amazed, for example, with Michael J. Fox’s attitude toward his Parkinson’s, calling it a “liberating” gift. I’m touched by the may bloggers who share of the immense struggle of caregiving and the eventual gratitude it produces in them.
It’s always a choice the person makes to see disease differently. Or rather, to see the value of the person despite the disease.
In this season of Thanksgiving, it is good to see the change that Alzheimer’s and other diseases have brought to our self-centered culture.
So, thank you to all of you who write and share of your struggles, forming a new community that chooses to rise above bitterness and embrace even the bleakest, darkest days of life for the goodness they produce.

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.

Humor in Alzheimer's treatment

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.
Exaggeration.

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!

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!

My last post on niacinamide and Alzheimer’s (it’s supposed to reverse Alzheimer’s de-mentiaThe Coenzyme nicotinamide adenine dinucleotide (NADH) has been used as medication in 17 patients suffering from de-mentia of the Alzheimer type in an open label trial. In all patients evaluated so far, an improvement in their cognitive dysfunction was observed. Based on the minimental state examination, the minimum improvement was 6 points and the maximum improvement 14 points with a mean value of 8.35 points. The improvement on the basis of the global deterioration scale (GDS) was a minimum of 1 point and a maximum of 2 points with a mean value of 1.82. The duration of therapy was between 8 and 12 weeks. No side effects or adverse effects have been reported from the patients or their caregivers during the observation period which is, in some patients, more than a year. This open label trial represents a pilot study from which no definitive conclusion can be drawn. A double-blind placebo controlled study is necessary
Read more

Now that’s what I mean. You read something about Alzheimer’s, and all of a sudden you see evidence everywhere that you’ve got it and that your life is over.
I’ve avoided reading Still Alice for years precisely because I knew it would send me reeling with the truth of my own “probable” early-onset Alzheimer’s. But I did finally pick it up, and, sure enough, suffered a major breakdown right about chapter three. Yikes! I do have it. Just like Alice, I forgot I was supposed to work on Friday, and when my sister called to remind me, I crumbled. It’s not just that I forgot. It’s that I forgot and didn’t have that nagging feeling telling me that I was forgetting something eating away at me. It was the peaceful forgetting that terrified me. Surely this doesn’t happen to a person unless they have Alzheimer’s. Ever. Right?

Is this forgetting normal or something more sinister? Is it stress from caring for Mom with Alzheimer’s and Dad with Parkinson’s (with a touch of menopause for me), or am I following in my mother’s footsteps?

The lucky thing for me is that I don’t have medical insurance–which means I can’t go to a doctor for a diagnosis. I say I’m lucky because, as we all know, it’s not so much the disease that hurts people, it’s the diagnosis. And it’s not just any diagnosis. Cancer, people rally around you. Alzheimer’s or any kind of mental illness, and the room empties out.
Shoot, you can have the disease for years, but as soon as you get diagnosed, that’s when the tazing starts. People just automatically take out their stigma-tazers and start shooting. And they think they have it set on stun, but really those stigma-tazers are always set on kill.

So my question is, what do you do when you read or hear about terrifying conditions to keep yourself from assuming yourself into that condition and absorbing the fear that is often marketed with it? How do you “keep your head, when all about are losing theirs”? (Kippling)
And once you’re diagnosed, how do you overcome all that tazing?
Chuck’s blog on early onset Alzheimer’s is, I think, a courageous way of dealing with one such diagnosis.
What is your way of dealing with the fear of Alzheimer’s–whether it’s diagnosed or imagined?

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.

See also: Alzheimer’s and Music: Stimulating the Brain to Remember

Here’s a fascinating animation superimposed over a lecture by psychiatrist and writer Iain McGilchrist on the two hemispheres of the brain. You may have to watch it 15 times to really get it.

As near as I can figure, these are the five stages of elder caregiving that correspond to the Kubler-Ross states of grief:

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.