Tag Archives: Emory Healthy Aging Study

A New Drug Test for Alzheimer’s Apathy Creates a Different Test for Me

Alzheimer's Spouse Issue, Uncategorized, , , , , , , , , , ,

woman at computer

 

At our recent annual check up, NP Stephanie suggested Ralph might qualify for a study on the use of Ritalin to treat apathy.

Apathy is clearly an issue for Ralph as it is for so many others dealing with Alzheimer’s.  Or at least “apathy” is the quick way I, and evidently plenty of others, have described the increasing indifference and lethargy that occurs in those on the Alzheimer’s spectrum.

So barring a cure, finding a treatment for Alzheimer’s apathy is obviously a good idea. Sitting in Stephanie’s office, I agreed immediately that we should see if Ralph qualifies for the study. Stephanie called the clinical research nurse in charge hoping we could meet right away, but after an unsuccessful game of phone tag, she left the nurse a message with my contact info and we came home. A few days later I missed a call from the nurse. I called back. Soon we began our own game of phone tag that lasted two weeks. Then two or maybe three days ago, the nurse and I finally talked. She described a 6-month blind study requiring one daily pill that may or may not be Ritalin and a monthly visit to Emory. Not exactly demanding. While we were on the phone she went ahead and emailed me forms. I was to read them and get back to her with dates we could meet in the next two weeks.

Of course, I’ll get back to you right away, I told her as we hung up.

Except as hours and then days passed, I put off opening her e-mail.

But every time I glanced at the little red number 1 signifying an unopened e-mail on both  phone and computer, I couldn’t help thinking, Do I really want to be bothered? Is the minor possibility of improvement worth the effort?

But those questions were only a cover as I toyed with darker thoughts. Will Ralph be more trouble if he is less passive? Is it easier for me just to let him float further out to sea?

Then this morning, I got around to opening another email, this one from the Healthy Aging Study in which I participate. There were two short surveys, one on “resilience” and the other on “purpose”. Resilience was a piece of cake; I could tell my coping answers were fine. But as for purpose, ugh, I hated those questions I couldn’t avoid answering honestly—like   “Disagree Highly” with having goals I look forward to accomplishing.

I have had to face that I have the apathy problem. Or rather we both do. But I’m the one making decisions for Ralph.

So with admitted reluctance, I emailed the research nurse back …actually the emails have been flying as I write this, multi-tasking semi-whiz that I am …and his appointment for initial testing to see if he even qualifies  is scheduled for next Wednesday. I have added it to my calendar and his.

And now I actually feel much better, having passed, if barely, my test as good caregiver.

(And yes, if my overall mood does not lift, I promise I will deal with it.)

FINDING MYSELF IN RALPH’S TESTING CHAIR

Alzheimer's Spouse Issue, , , , , , , ,

woman test

I am participating in Emory University’s Healthy Brain Study, part of the university’s Healthy Aging Study. While the Aging Study, the largest of its kind, uses on-line feedback to research multiple health issues related to aging, the Brain Study takes a more involved approach to researching the predictors of Alzheimer’s.

In other words, I can expect to be tested and prodded for about six hours ever two years. I like the idea that I have found a way to participate actively, not simply as Ralph’s caregiver. However, my first visit was frankly disconcerting: I HAD TO TAKE THE SAME COGNITIVE TEST RALPH HAS BEEN TAKING.

I remember Ralph’s first test experience. Or I remember my experience: sitting in a waiting room for two hours reading gossip magazines until he emerged slightly gray around the gills. On the drive home he complained about how much he hated the process while I put on a cheery, encouraging face aware he’d probably not done well. (He had not.)

Since then, every time we head to the Emory Brain Health Center, Ralph asks worriedly if he’s going to be tested. I have learned to say, ‘I don’t know,’ to avoid making him more anxious than he already is. I am told that he is always quite cheerful and communicative in the actual testing, but he leaves each visit saying he feels “disoriented,” and “more foggy than usual.”

I am always sympathetic. Or I try to be. I admit that I have grown just a teensy bit callous after hearing the same phrases over and over; a small, not nice part of me shrugs off his complaints, secretly thinking, It’s a test, get over it.

So there I was, only a few weeks after Ralph’s most recent test, sitting at a desk about to embark on my own mental examination. It didn’t help that the test giver and I actually knew each other slightly, having worked together on a hospital improvement project. Once the test began she was a neutral blank.

I started sweating at the first easy question. It didn’t help that I recognized I was facing the same slate of mental exercises that Ralph has faced, that I knew how many words he remembered in one exercise and how many mistakes he made in another and how much time he took to complete a third task.

I started strong but could feel myself tiring mentally as the tests wore on. My concentration wandered when it shouldn’t. I missed some obvious answers. I began to struggle. And in the follow-the-dots a-1-b-2, a test in which Ralph made two mistakes this year but none last year, I somehow skipped my last letter; not a good feeling even if I was at least twice as fast.

The Bottom Line: I WAS TAKING THE SAME COGNITIVE TEST RALPH HAS BEEN TAKING AND I DIDN’T LIKE IT ONE BIT.

I knew rationally that everyone who takes the test feels that she screwed up, and I knew I basically did okay. No matter. By the time I stumbled out into the daylight I felt, you guessed it, “disoriented” and “more foggy than usual.”

Not great feelings but an excellent wake up call. I felt  a new infusion of empathy for Ralph (and others in his situation). Most of us can laugh off our mental lapses—misplaced keys, names on the tips of our tongues—but Ralph goes into each test, lives each day, each minute, struggling against dark impenetrable holes that he feels deepening. Having had my little taste of fear, I admire his bravery (and the bravery of his fellow travelers in Alzheimer’s) all the more.