Wednesday, August 23, 2017

Sky: Who Are the Experts?

Who are the experts around here?

Who knows what’s going on?

What’s next? When?

How much time do we have? 

Where do we look for help? 

A year ago, after enough people told me to get my head examined, I got my head examined….And my world changed forever. A whirlwind of practitioners had their way with me to see if any of their specialized knowledge could shed light on what was going on inside my ragged little brain.

Technicians took away buckets of blood to test for a humongous list of maladies. (Now I know for sure I don’t have syphilis. I guess I can be relieved about that!) I was interviewed by a psychologist and took a battery of psychometric exams to check out my cognitive capabilities.

Twice, I was slid into a space-age machine. Once to perform an MRI scan of my brain at rest and look for tumors or other bad stuff. The second time to check what happened as my brain was fed a special treat of IV glucose seasoned with radioactive isotopes to compare how efficiently various parts were doing their jobs.

The person in charge of all this was the Director of the Memory Center, Dr. P, a veteran neurologist who has been diagnosing people with Alzheimers and other dementias for over 20 years. He was quiet, steady and calm, with an excellent bedside manner. Jane and I met with him several times as we negotiated the complexities of arriving at and talking about a diagnosis. We quickly built a rapport, and I trusted his expertise. In those early days, I needed a rock, and he took on that role for me.

But, as time passed, I started to notice what the musician David Byrne calls Sand in the Vaseline. Part of it was my own fault. I wanted to know Everything about the fearsome world I was due to enter, and the Memory Center didn’t have answers. I was heartened and consoled by their offer to monitor me periodically over the years ahead (Oh, I have years?) and generally keep an eye on things. Dr. P suggested that we get our legal affairs in order as soon as possible and prepare ourselves financially, whatever that meant. I said I’d like to join a support group, and Jane asked what resources were available for her.  Dr. P said he had no idea and referred us to the social worker associated with the Center.

The salve gets grittier…

We dutifully make an appointment with the social worker and find out that Dr. P was correct in knowing nothing about services for families because there weren't any. The social worker told us that her caseload included so many hundreds of families that she was impossibly overloaded, as her position was only half-time. There was a chance that a grant might come through to allow her to do more, but we shouldn’t count on it.

Dr. P was good about answering questions, and I was good at asking. (The reverse, not so much. Dr. P had surprisingly few questions for me. Or, maybe I was just too busy asking my own.) The combination was a recipe for at least a half-way productive conversation, and we had a few good ones. Problems came as I pressed for details about what to expect. I wanted to know what happens next and what happens after that.  I became upset as Dr. P, with his 20+ years in neurology, seemed to give me just platitudes:

* Everyone’s path is different.

* There is really no way to predict…

* You could live 20 years, or….

* The course of the disease varies in a major way from person to person.
* We will keep an eye out and adjust treatments as necessary.

* Drugs can help some people with some symptoms, sometimes

* I can’t really predict how long you will be able to read or carry on a conversation.

And, my two favorites:

* Everyone agrees that exercise is good.

* Uh oh…….

My irritation softened as I learned more, mostly through independent reading and talking with people with dementia that, sure enough, the “platitudes,” while annoying, were also largely true! Dr. P was not just dangling me along. There really is an unpredictable variety of courses of the condition. The medical knowledge base about dementia, the things scientists know for sure, while increasing by itty bits, is remarkably thin.

[Closely related is the unimpressive array of drugs for “treatment." As I mention elsewhere (, the drugs, if they do anything at all, serve only to temporarily alleviate some symptoms, not to reverse or even to slow the course of the disease.  A large British study demonstrated no negligible difference in life expectancy between people on the standard regimen of drugs for Alzheimer’s, Aricept and Namenda, and a control group that received no medication. Drug use can be an effort to prepare the ground to make the body a less hospitable place for the plaques and tangles of dementia e.g.. Lipitor and other statins to modify cholesterol. Drugs are also used to try to counteract the side-effects of other drugs. But don’t get me started on drugs…!!]

I want to finish this by reflecting on dementia and wisdom. I am coming to believe that dementia may possibly be found sometimes skulking around wisdom’s back door. It is possible for dementia to make people smart!

“Yeah, right,” you say. “Dementia is the opposite of smart!  What, are you crazy?!! Got a few screws loose?! Not playing with a full deck!? Coo Coo?! Coo Coo?! Coo Coo?!”

OK, here’s just a few ways that demented people can be smart:

  • We often can slow down and experience “reality” at a different pace.
  • We can often be comfortable with more quiet in conversations, both internal and with others, resulting in an appreciation of quietness in self and others.
  • We can often literally see things others miss. When I pay attention, it’s easy to see patterns in trees and rocks for instance. Pleasant, no-cost, no-risk, no-drug “highs.”
  • Through experience, we can learn ways to work with anxiety and fears when they arise.
  • We have the opportunity to provide effective self-care, based on our intimate knowledge of our changing selves and interaction with other self-aware people living with the condition.

Of course, all of these and other positive sides of dementia have their dark and frightening counterparts. More than we welcome. More than we can stand, sometimes.

Nevertheless, we all must continue to appreciate and protect the precious baby in the grungy bathwater.


  1. Thanks for sharing both your wisdom and frustration, Sky.

    I've often reflected on the "living in the moment" nature of life for people with advanced Alzheimers, and wondered whether it provides a measure of calm.

    I don't know of any other blogs that record the experience of Alzheimers in the way that you do. I find it touching, informative, humanising. Thank you.

  2. I am so grateful for these observations you are sharing with us, Sky and Jane. My husband Barry just this week had Namenda added to the 14 other medications he's taking already, Aricept among them. He's been on that and Lipitor for years. He doesn't have an Alz diagnosis; "just" mild cognitive impairment.

    I was thinking about the helpful caregiver support group here in our retirement community in northern California when I read what you said about how little help the doc and social worker there could offer. My experience is that at least it is very good to share stories and thus to know I am not alone in the caregiver journey. It's a challenge for me to adjust expectations.

    Thank you, both of you, for sharing your experiences. ~Yvonne

  3. Growing up I was always awed by what might be called your "book smarts", Sky. You were always top of your class, aced your SATs and got accepted into an Ivy League college. Now as an adult and many years of public school teaching behind me I have come to appreciate a much deeper and wider idea of competence, ability and understanding. I need no convincing that what you list above are ways of being smart. That you have discovered them while being on a journey no one wants to take only adds to the ways in which I am awed by you.
    I'm taking an online course at the moment. There's a lot of interesting brain research presented and the professor uses this research to support her approach to teaching math. Very simply, one key idea is that mistakes cause your brain's synapses to become active and your brain to grow. Another key idea is that speed is not important. Some of the most accomplished mathematicians worked at very slow rates. Sky, I know your brain is working differently than it used to work and these ideas may not apply in the same way BUT if people could stop characterizing each other's intelligence in narrow ways and come to understand that smartness doesn't always look like what we were told- 'smart people don't make mistakes, smart people are fast processors...'- it would make everyone's life more humane.
    Love, Mary Y.