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I have a healthy fear of my potential for an unhealthy brain. For all the improvements modern medicine has made in the last century, though, there is not much to be done on my part to allay my fears. In the case of the Alzheimer’s disease I stand to inherit from my mother, I think breakthroughs are on the horizon. For now, though, even the best advice the medical community can give leaves me a little discouraged.
I am told to maintain good cardio-vascular health. Yup. Fine. And what good will that do me?
It will prevent the forms of dementia resulting from an oxygen starved brain.
Will it do anything for the kind of dementia to which I am genetically pre-disposed?
Nope.
I get advice to eat healthfully, get plenty of sleep, and limit stress, alcohol intake and blows to the head. I don’t want to dismiss what is obviously a set of reasonable guidelines for better overall health, but, truth be told, I was looking a little more of an edge.
As a last resort, it seems, there is a well-meaning segment who suggests that I do the crossword puzzle to stave off Alzheimer’s disease. If asked, I will say those folks are full of baloney. In my mind, this is the medical equivalent of treating bullet wound to the belly with a shot of whiskey and a dirty rag. The whiskey might dull the pain and the rag will keep the blood off of the settee, but, for all your efforts, you’ve done nothing to fix the problem.
The crossword advice, like the whiskey and rags, just masks the symptoms. It doesn’t untangle the plaques.
Throwing caution to the wind, I have embarked on a different path. Deciding not to mask my symptoms with crossword puzzle wizardry, I have decided to take a different approach. This morning I tried my hand at the KenKen puzzles that the paper offers. At first glance, one might think this is right up my alley; number games…math…logic…
Ahh, but that is where you would be wrong.
Instead of gently stimulating your brain and subtly rebuilding alternate neuro-pathways around less effective synapses like crossword puzzling might do, KenKen highlights the severity of your memory loss, punishes you for every minor lapse in concentration, and leaves you reeling from the startling horror of hearing your internal monologue stutter through the list of number combinations to get two numbers between 1 and 6 to add up to 11.
After just a few minutes of “well these two blocks are either a 1 and 4, or a 2 and a 5, unless, of course, it’s a 4 and a 1, or a 5 and a 2, which works if these other three blocks are mostly odd, but only if there is a 6 in the corner, which means that the bottom right is a 1, 3, or 5, but then I can’t use the 5 or the 1 for the first two blocks” I found myself praying that the plaques in my brain were already forming. That way, I supposed, there would be something, at least, holding my grey matter together.
There is the old phrase “those who can, do”. For my first efforts, though, I have to say I KenKen not…
Today is World Alzheimer’s Day. Most of what you will see on the web (including my own facebook page) are reminders to where purple; to raise awareness. It is, of course, the hope that with rising awareness will be rising investment.
Today might be more than that, though.
It is an opportunity to remember for those who can no longer thread those memories together. Go visit that parent, grandparent, uncle, aunt, neighbor. Bring a photo or a letter or youngster. Share a memory. It may not be lasting, but it will be a moment when, while they may not remember, they will know that they are not forgotten.
Let’s remember the army of health care providers that deal everyday with the people who dementia sufferers become. They deal with the repeated questions. The alternate realities. The altered and alterable personalities. They will do it today, on World Alzheimer’s Day, and they will get up tomorrow and do it again.
Let’s remember those who simply bear witness; who face the loss of a loved one every day.
A friend sent me a piece this morning written by a nurse within an elder care facility. In it an elderly woman confronts the nurse in an agitated state. Holding up a picture of her very much younger self, the older woman asks “Have you seen this person?”
It’s a valid question from a woman who bears so little resemblance to the vibrant, hearty woman in the photo.
It’s a valid question from a woman who no longer recognizes family or long time friends.
It’s a valid question from a woman who requires residential treatment for a disease that has robbed her of the ability to recognize everyday dangers, to navigate her way home again or to follow the rhythm of the day from morning meds to meals to bedtime without friendly reminders from the staff; robbed even of the ability to recognize herself in the mirror.
The nurse’s response was one of those that anyone who has ever visited the sick or dying, or the frightened or grief-stricken prays will come when called upon to say something. Her response is kind I hope I found often enough to bring a little comfort. Her words have that special kind of grace.
She said “I have seen this person. She has aged gracefully and is loved by many”.
You can read the whole story, submitted by subscriber “jaelpn”, here at AllNurses.com
While I believe that Ms Gullette’s point in her NYTimes Op-Ed piece, Our Irrational Fear of Forgetting, is that many people remain ignorant about Alzheimer’s Disease, I am inclined to believe she may suffer a bit of ignorance herself.
To be fair, I have to agree that we, as a society in general, tend to over-diagnose, over-analyze and overreact. I have openly admitted that I, myself, am guilty of over-thinking each instance in which I misplace my keys…or forget a word…or come home several items short of what was on my mental shopping list.
It is well-known that, without widely available definite diagnostic tools, Alzheimer’s is frequently misdiagnosed. I would even say that, despite the near-epidemic number of Alzheimer’s sufferers, few people actually have much experience in dealing with its real effects. I’ll even say that I agree with her assessment that,”Greater public awareness of Alzheimer’s, far from reducing the ignorance and stigma around the disease, has increased it”.
That’s about where Ms. Gullette and I diverge in our understanding.
As a basis for her exuberant declaration of ignorance causing harm she cites, not death rate statistics or quality of life surveys among elderly, but a recent pattern of the use of Alzheimer’s as a suicide trigger in several fictional works.
Excuse me?!
She cites a single forgotten word as the basis for the diagnosis of Alzheimer’s.
By whom? The patient, herself? All I can say is that’s not how it would be diagnosed by any physician or psychiatrist whom I have encountered. I am sure it is not the standard of care.
I can’t tell you how many times my mother went through a complete, multi-question neuro-psyche exam to evaluate her cognitive function. There were several physical exams, including blood tests, blood-pressure and circulation checks, and brain imagery.
Ms. Gullette’s voice becomes shrill at the thought of the discontinuation of life-saving treatments based on “cognitive impairment”. Her outrage takes on the guise of being completely rational, I suppose, when you believe that a diagnosis of “cognitive impairment” was the result of a single instance of misplaced eyeglasses. That just isn’t the reality, though. As a society, we are much more likely to use extreme life-saving measures on someone who is already “cognitively absent” than we are to deny life-saving measures from someone who had a one-time memory lapse.
What Ms. Gullette seems to be completely unaware of is that Alzheimer’s is a fatal diagnosis that results in much more than “forgetfulness”. It is a disease that robs the sufferer of the ability to recognize oneself, one’s loved ones, one’s own home. It renders voices mute and makes even three-dimensional space unfathomable. Alzheimer’s takes away the narrative of one’s life. Who am I? Why am I here? Who are these strangers around me?
Eventually, the disease will rob its sufferers of the ability to swallow, to breathe or to circulate blood.
Eventually, the disease will affect as many as 16 millions Americans
Rather than dismissing Alzheimer’s fear as irrational and feeding into the widespread myths and misperceptions, let’s try educating a few folks about the disease. Rather than citing fictional acts, let’s offer some real hope and real information about the progress of research to date.
Let’s encourage support for ongoing research efforts.
Let’s be rational.
I have been reluctant to weigh in on the already out of control prattling on by some spiritual leader about “the Rapture”. I’d prefer not to lend one more voice to the fury he has created, so let me state up front that it is all a tremendous crock of shit.
He has a point, though.
The end of the world is coming.
Just not, you know, tomorrow…at least not for most of us.
For each of us, though, there will be an end to this life. With that thought comes a few questions. It might be simple to ask something dreadful like; “Are you ready to die?” or ”Are you done with what you wanted to accomplish?”
Who on earth can answer that? And why should we have to?
Those are “How big is the universe? How high is the sky?” questions. Having never done it before how can any of us be sure we are ready to die? Who amongst is really living their life with one goal to accomplish? If they are, what happens if they finish that one goal early? Turn yourself in at the Pearly Gates, and see if you can check in early?
A more interesting question to ask is, if you knew that your world was to end tomorrow, would you do something vastly different? What would you do now? What would you forego for evermore?
Rather like storm preparation, I suppose the options run in a couple different lines; batteries and bottled water vs. beef tenderloin and Cabernet Sauvignon. In the case of religious zeal, I suppose it is more like tithing and redemption vs., well, beef tenderloin and Cabernet Sauvignon. Given my pragmatic bent, you might expect me to draw lines more along the lines of following the Golden Rule vs. Bacchanalia.
Truth be told, I am leaning more toward a little bit of both as I try to balance my own life. I find myself asking if I am being the person I want to be, making decisions I can defend should Judgment Day come. I am also trying to be a little kinder to myself, as well. I need to pay my taxes, mow my lawn and get up and feed the beast. I need to try to help the folks around me and sometimes I need to hold my tongue. That said, I also get to sleep in late, waste an afternoon sitting in the sunshine and have a second …or third… glass of wine on occasion.
So while the world won’t end tomorrow, “What would you do differently now if it were?” is not a bad question to ask.
An even better question???
Are you being the person you want to be?
I will tell you that I am not really bothered by this first Mother’s Day since my mother’s death. I remain unaffected. It is, after-all, a Hallmark holiday, made up for the sole purpose of selling greeting cards. In the American way, over the years it has morphed into a gimmick to sell flowers and jewelry, as well.
(Seriously? Jewelry?)
Whatever it started out as and whatever it has morphed into makes no difference to me, especially since this year I am without obligation. I don’t even have to pretend that I don’t think this is the stupidest annual event ever.
What I do find myself pretending is that the 6 month anniversary of my mother’s death passed without notice earlier this week. I am pretending that my watery eyes are solely the product of seasonal allergies. I am telling myself that I like the silence in the house, and it is not sappy mommy stories and the continued sales pitches that drove me to nearly smashing the radio.
While I am putting on a brave front, I am telling myself I am not the most selfish person in the whole world and that I should not feel badly at all for deciding that I was not cut out to be part of a two dog household…at least not as long the beast is one of them.
What I cannot fool myself about is that, in my decision, I may very well be losing the best dog ever…
Ack.
A couple of my recent posts have been about keeping your eyes open. In Driving Lessons, one of my major points was the lifesaving property of watching the actual movement of vehicles around you rather than the rather uncertain implied intentions of a turn signal. In Look, I wrote of the welcome reminder to simply look around you at the good that is a happening right under our noses.
And then I forgot to look.
I have had my head down for days; plowing through a large share of work that is due, getting my taxes done and sorting and filing the mass of paperwork that remains in the aftermath of IRS and State calculations, reviewing documents, updating forms and returning calls. It has occurred to me on several late night occasions that I had not written a post, but in all the churn of administrative details I found no inspiration for writing; forgetting, of course, or at least temporarily ignoring, that part of my pledge is to write something everyday.
Once again I have missed an anniversary. I started writing two years ago yesterday with two posts; as an explanation of my chosen blog header I wrote Metastable, and in an admission, in The Morning After, confessed that the act of starting a blog may not have been entirely well-thought out.
At that point I had been home, retired, for about four years. My mother had been in a nursing home for more than a year as her dementia had advanced, yet her general health was remarkably, dishearteningly good.
At that point in my life, the beast was still a mush-faced bundle of random energy who peed on my floor, chewed on my hands and pulled like a sled dog on a leash. My circle of local “friends” consisted nearly entirely of caregivers and residents of long-term care facilities. I was working a job that ultimately would leave me feeling expendable. I had things to say but no forum for saying them. My experience as caregiver felt isolating.
My how things change…
So I missed the anniversary yesterday, but today I stopped to look back and see how far I have come. Thanks to all of you who have joined me on this journey.
It has been years since Tim Allen starred in the sitcom Home Improvement. It’s been even longer since he first started his stand-up comedy act that provided superlative insight into the mind of a wanna-be handyman. In both his stand-up act and the sitcom, we learned that, according to Tim, the most important factor in choosing anything from autos to cordless drills to vacuum cleaners was power; the more the better.
While I would like to think of myself as highly evolved, when push comes to shove, I fear I am a “more power”, “go hard or go home”, “drive it like you stole it”, “get a bigger hammer” kind of girl.
Every car I have ever owned has had a manual transmission, and, while I am happy to cruise along most days and get as many miles to the gallon as possible, I like being able to downshift and accelerate when I need to. In my sailing days, I would grow impatient with days spent on the water carefully trimming the boat to get the best speed in light winds. I greatly prefer a day where the crew has to batten down the hatches, put a third reef in the mainsail and hang on for dear, friggin’ life.
I am the same way with work stuff, too. I can appreciate finesse and subtle persuasion. I am all for careful planning and thoughtful discussion. I am even capable of employing those techniques when appropriate, but, it must be said, I am more likely to work harder, stay longer or argue more vehemently when faced with unforeseen challenges.
I’m definitely not saying that I do all the work myself. I am saying that when circumstances have changed, and the plan you started with no longer is going to work, and you are 700 miles out to sea, keeping the 400 people in my department all motivated and pulling in the same direction is hard work.
Some situations simply require you to lower your center of gravity and push. More power! ErrrHHH. ErrrHHH. Errrh.
I am a “more power” girl with data analysis as well.
Power studies in statistics are used to determine the size of the sample needed to get the degree of clarity required for certain studies. Because sample size can drive the cost of the study, frequently power studies are used to determine the minimum possible number of test subjects required. Where cost is not an issue, though, I always say more data is better.
Although I grumble about the one dataset that I have with 680,000 tests, I cannot argue that it has “powerrRRR” (enough to crash my computer periodically).
In today’s NYTimes, Gina Kolata’s article, Vast Gene Study Yields Insight on Alzheimer’s previews medical news being published today outlining the discovery of 5 additional genes common to Alzheimer’s sufferers. There is hope that greater understanding of the genetic components of the disease will shed light on the biology of the disease as well.
What I found more interesting than the identification of genes, was the reference, once again, to the revolution in research that has fueled many of the latest developments. A number of year ago, Dr. Gerard Schellenberg of the University of Pennsylvania argued that the medical world’s fundamental approach to genome research needed to stop. With support from the National Institutes of Health and the National Institute on Aging, small genome studies were curtailed in favor of a massive collaborative effort. Researches around the world were convinced to conform their data collection to required information and share their data across institutions.
Recent gains are the result of a dataset of more than 50,000 subjects.
More power!!
As I visited young friends of mine recently, the animated feature film Monsters, Inc. was playing in the background.
I love this movie!
The whole movie is fabulously illustrated. The story lines carry the basic premises that we should not be afraid of something just because it is unfamiliar and that laughter is more powerful than fear. There are good lessons there.
In addition to good lessons there are some fabulous characters, including a little girl named “Boo” – not her real name, but in a movie about scaring children, when asked her name the little girl, in keeping with the theme, said “boo!”, and then giggled; refusing or forgetting to be scared. Boo has two jaunty pigtails on the top of her head. Occasionally, when I am behaving like the strange human that I am, the beast will look at me curiously and her ears will perk up then cock out to the sides. I tell her she has “boo-ears” when I get that look.
Even when I am behaving strangely, the beast, like Boo, refuses to be scared.
Which isn’t to say that there are not things that do scare her. She doesn’t like loud noises, or the toenail grinder, or the rustling of grocery bags or walking on pergo floors.
It is a pretty short list, and I am grateful for that. I would not wish for her to live her life in fear. Still, I wish she was more afraid of moving vehicles or the bad mood of mine that comes from her eating my shoes. A little fear in life is healthy; lifesaving perhaps.
And fear is normal. I think we all have a few monsters hiding in our closets.
I was talking with a friend of mine the other day. She had just had one of those long and hard discussions with a loved one about health concerns. I’ve had those discussions, too, and I can empathize with how hard they can be and how much they reflect and rouse our own fears.
She confessed, as healthy as she is right now, that one of her biggest fears was that she could have a heart attack and die.
I confessed that my fear is that I won’t.
Different monster…but we all have them.
Having only met my own, I don’t know how to tame all of those monsters. It does occur to me, though, that there are a limited number of approaches available to us; turn and introduce ourselves to them face-to-face; decide not to deal with them and put them out of our minds; or turn every light on in the room, sit with our backs pressed against the headboard and stare at the closet door all night.
The approach you may take might depend on the monster.
For me, the fear of not having a massive heart attack is not something I can control, so, for most days, I simply put those thoughts out of my mind. For other things like my personal safety, I choose, like making introductions, to make myself aware of the crime in my area. Because I have familiarized myself with the risks where I live, I can take what I think are reasonable precautions. For other fears, like when the beast was throwing up blood, I chose to have her stay at the clinic overnight and have more testing. It was a tense and sleepless night spent watching the closet door, although, as it turns out, it was nothing.
Other folks might take different approaches to each of these potential monsters. More important than the approach we take, though, is not to let the monster choose for us, or at least to limit the number of monsters that are allowed to keep us up, standing vigil, all night.
Growing up I remember owning a poster that definitively declared:
“Salesmanship Begins When the Customers Says ‘No’ “
I have no idea why I had the poster. Unless you count my minimum wage job slinging fish at the local market, I’ve never been in sales. Never want to be in sales either. Not only would I hate it, I would also be bad at it.
Very bad.
The premise of the poster doesn’t quite sound right to me either. Disrespecting someone’s stated wishes for your own personal gain falls pretty far from the values I was raised with. For a product with some real value, maybe I can see pushing the boundaries a bit, but, in general, when I am being pushed into a sale, something within me innately pushes back.
I duck and run through retail outlets that staff their stores with pit bulls on commission. After a two-hour search for a new outfit one afternoon, I left the whole ensemble on the counter and walked out of the store when the saleswoman tried to push one more “accessory” on me. When someone is really pushing hard for a sale, my mind wonders, sometimes aloud, what is so wrong with a product that needs that amount of pressure applied to a sale.
Ridiculously, I spend an inordinate amount of time attempting to get myself off of mailing lists and email campaigns. I squint through the fine print on the junk email I get in order to unsubscribe to their incessant barrage. I don’t even want to just send the stuff to my spam folder. I want it to stop.
It doesn’t.
More discouraging is the knowledge that it never will.
When I retired from the Navy and came back to my hometown, I moved into the family home. When mom went into assisted living and I moved to my condo, I forwarded all the mail from the family address to my new residence. Two years later I moved again. Again I forwarded the mail. As a consequence, I still get mail for all of the previous residents of the house I grew up in.
Occasionally, I get mail for my brother. More commonly, I get mail for my sister.
Yesterday, I got an invitation to an open house at a new elder care facility. It was addressed to my mother. I am quite certain we won’t be going to that open house. I am also pretty sure that I would never recommend an elder care facility that doesn’t screen death notices.
In today’s mail came tickets to a seminar on estate planning, inviting my dad to enjoy an informative afternoon with a financial planning firm offering personalized service.
Just exactly how does a company that offers “personalized” service overlook that their potential client has been dead for nearly 14 years?
For the “salesmanship begins when the customer says ‘no’ ” crowd, I am sure there is no appropriate time to quit selling.
I for one, though, would like to see it end at least by the time the customer has died.
But maybe that is just me…
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