Sky: Nighttime Troubles

So, here’s another not so pleasant aspect of Alzheimer's: trying to kill my wife. For several months now, once or twice a week, in the middle of the night, I have half surfaced from horrible nightmares. The nightmares are truly terrifying, too terrifying to remember them all. Their themes are the same though. Something horrible is after me, and I have to fight back. My screams are reported to be blood-curdling. Worst is my strategy to actually fight back, hard, with Jane playing the role of the monster.  So far, I’ve inflicted just scratches, but it’s getting worse. 

Jane is not pleased.

Sky: Drugs

Dr. P barely skips a beat from letting me know my probable diagnosis: Likely early stages of Alzheimers Dementia, with Mild Cognitive Impairment, before launching into his offerings for “treatment.”

The quotation marks here indicate sarcasm, because there is no treatment. 

No Treatment. No Treatment. No Treatment. No Treatment.

Despite huge efforts, Alzheimers Disease (AD) remains incurable, progressive, and fatal. There are no drugs to stop the progress of the deterioration or to build back brain capacity. 

Sky: Welcome to my World

Have you noticed? 

these posts are

 sometimes in order 

and sometimes not. 

some are longer, 

some are shorter.  

some might even begin to rhyme

others have slipped their anchors to time

 WELCOME TO MY WORLD!

Jane: The Myth of the "Four Things"

1) Spend time with people/don’t let yourself get isolated — find meaningful paid or volunteer work and hang out with people you love.

2) Get some exercise — aerobic, several times a week — walking, biking, running, swimming, etc.

3) Eat right — preferably a diet rich in plant foods — fruit, veggies, whole grains, nuts, legumes, fish — think the Mediterranean diet.

4) Keep your brain active with reading, puzzles, hobbies, and other mental challenges.

The Alzheimer’s Association, AARP, and just about every health care practitioner we’ve run into these days has touted these four things as a way to “age well,” improve brain health, and keep you from getting dementia.

Right. 

Sky: PET Scan and Diagnosis

After a week or two of fussing and wondering how I did Taking The Test, Dr P lets me know I did very well, “high average,” cryptically adding that had I taken the test several years ago, it probably would have been “superior.” Now he recommends an additional test, a PET scan, to make a more conclusive diagnosis. I’d done so well on the neuropsychological testing (eg. remembering the names for “comb” and “pen," among other things!!) that he was looking for more data to make a clear diagnosis.

So, back to the hospital again for what turned out to be my favorite of the barrage of tests. [Not that anyone cares about my personal preference, but still.] I had to fast, no solid food or juice or COFFEE for the morning of the test. That wasn’t so bad, but more interesting, they wanted me to “become a couch potato” for 24 hours before the actual test. No exercise. Walking only if necessary. Just chill out and relax. 

Nice. Sure beats repeated blood drawing! 

Sky: The End of Nature

Bill McKibben, one of my personal heroes, has emerged as a world-wide advocate for ending the human species’ addiction to fossil fuels. With his groundbreaking book, The End of Nature, published in 1989, he became the first to point out to a general audience the dangers and hidden costs of our addiction. Now, almost 30 years later, McKibben has become a rockstar for the climate. He describes his schedule as “frenetic,” traveling (primarily by plane) to speak to groups, small and (mostly) large about the ways we, as a species, are fouling our nest. At rallies and protests he is relentless with the latest statistics and horrifying stories of a planet in serious trouble.

The End of Nature has a whole different tone. McKibben manages to include plenty of disturbing data…quite an accomplishment since scientific study of climate instability was in its infancy then. But the overall tone of the book is remarkable. quiet and poignant as McKibben reflects on his theme. Basically, he notes that while the American Dream of Wilderness and New Land has been long dead, our parallel Dream of Endless Economic Growth, fueled by endless fossil-based energy, is still going strong even as producing this energy becomes more and more problematic. 

Sky and Jane: The Brain Hat

About my fashion statement over there on the right…

For a couple of months now I’ve been sporting this hat, knitted by Jane. Every day I get comments. “Hey, that looks like a brain.” “Love your hat, man!” And my favorite so far: “Psssst! Your brain is showing.”  Most comments toss the ball back into my court, giving me an opportunity to respond. Do I laugh and keep going? Do I stop and chat? 

The Hat is a pretty good indicator of how strong and confident and engaged I’m feeling, In fact, the Hat has opened up some very interesting conversations. At the very least, it’s good for eye contact and a good laugh. Once, feeling strong, I responded, “Actually, it’s my Alzheimer's Hat. I’ve recently learned that I have Alzheimer's, and the Hat is giving my brain support.”

Sky: Alzheimer's Canyon: The Arrival

WTF? This rutted off-ramp isn’t on the map, or the GPS either. And actually, there is no choice: the huge reflective barrier informs me that the highway ahead is closed.  ROAD ENDS. This grubby detour is my only way out of here. Sure enough, there’s Dr. P wearing a Highway Patrol outfit directing traffic [me], making sure I get off the Interstate, now. 

Kind of a pain in the ass because I’d been making good time up on the 4-lane across the high country. The driving has been easy….spectacular at times…Wide open country, mesas, buttes, purple mountain majesty. All that stuff. The road signs out here tell you the altitude when you enter the next town, and I’ve been enjoying how I’ve been effortlessly climbing up and up without any perceptible strain on the vehicle. Nice.

But now this Detour. WTF, indeed. I mean, planning my trip, I knew that Alzheimer’s Canyon was in the area, but I just wasn’t all that interested. It’s an old-person destination, right? And whatever else I am, I sure don’t see myself as elderly.

Jane: The Diagnosis

“The results of your PET scan are consistent with early stage Alzheimer’s disease,” says Dr. P, soothingly and solemnly.

“Thank god,” I say to myself. “I’m not going crazy. There is something wrong with Sky.”

I place my hand on Sky’s arm, and watch his deer-in-the-headlights look blossom. 

Sky: Taking the Test

In August 2016, Jane and I take our fateful first trip to the Memory Center, a facility operated by the University of Vermont Medical Center. Here’s how the Center describes what they do:  

“Memory loss can be a serious medical condition…or simply a recurring forgetfulness that affects many of us.To help patients understand their memory condition, the Memory Program at the University of Vermont Medical Center provides evaluation, diagnosis, and treatment of age-related memory disorders.”

That sounds OK. I mean they have some ways of reassuring people what kind of memory loss they have. If my family wants me to get checked out…what harm could it do?

Jane and Sky: New Blog!

We are going to start blogging soon, but in the meantime, here's something about us and why we're doing this:

Sky Yardley and Jane Dwinell have been together since 1985. They raised two children, for many years had a small farm, and retired in their 50s to travel and do volunteer work. They both had successful careers — Sky as a family mediator, and Jane as an RN, freelance writer, and Unitarian Universalist minister. As an avocation, they designed and built six houses and renovated two others. 

Sky was diagnosed with “probable early stage Alzheimer’s disease” in the summer of 2016. He had been showing signs of memory loss since 2012, most significantly since 2015. He was 66 when he was diagnosed. Jane was 62.

We started this blog as a way to erase the stigma attached to dementia and to increase understanding of the way it affects people on a day-to-day basis. People with dementia, and their loved ones, are not to be pitied or ignored, but to be treated with the full respect accorded to anyone, and with the understanding that they can meaningfully participate in life and in society despite their disability.