Tag Archives: Alzheimer’s testing

FINDING MYSELF IN RALPH’S TESTING CHAIR

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.

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Ralph’s Annual Mental Check Up

doctor

Ralph had his yearly mental check up yesterday. A slow learner, after four years I have finally realized that there is no reason to bring up appointments ahead of time. So when he woke up at eight, I announced we had to be ready in two hours to head to Atlanta to see his doctor at Emory. Of course, Ralph was a little tense on the drive in, but less anxious than he would have been if he’d had more time to worry. And I didn’t have to have the following conversation in the car more than a few times.

Head or hands? he asked. (We have seen a dermatologist at Emory recently as well so asking this was a positive sign.)

Head.

What are they going to do?

Ask you some questions probably.

Will it take long?

I don’t think too long.

I am not looking forward to this.

I nodded but secretly I have come to look forward to our Emory visits with Nurse Practitioner Stephanie V. While Ralph gets his testing, Stephanie always meets with me alone for an update, a conversation that I find strangely comforting. She asks my impressions, and then lets me ramble a bit. Her advice tends to be straightforward and useful. She never fails to ask how I am doing. I always get not quite teary but close. I always leave feeling reassured that I am handling things better than I thought.

As for the appointment results… Amazingly, they showed exactly what I told Stephanie I’ve sensed: that his objective memory, for words for instance, seems to be holding steady; but that he seems to be having more difficulty  carrying on conversations or activities like following directions that require more complicated processing.

In the testing Ralph actually improved his memory for words, remembering more animal names and more words beginning with the letter F. (At least that’s my memory of the results—in fact as soon as I leave Emory my own memory of what has been said becomes a bit of a blur.)

What dropped was his ability to connect the dots when he had to include numbers and letters, i.e., go from number to letter to number. The test, which he completed without errors last year in 70 seconds, took him 120 seconds this year with several mistakes. In other words he is having more trouble with more complicated linkage.

I am not sure how to read this reversal in strength and weakness and don’t think it matters too much. Basically, the holding pattern we have been in still holds and will keep holding until it doesn’t.

“So, How Is Ralph Doing?”

question man2

 

An old friend called to catch up yesterday. We talked for maybe 40 minutes, were nearing the end of the conversation, when she asked, “How is Ralph doing.”

She’d clearly been both hesitant and dying to ask. I had been equally hesitant and dying to answer.

This scenario seems to be repeated in one form or another multiple times a week these days. Everyone who knows, however vaguely, about Ralph’s cognitive problems wants an update but everyone seems slightly uncomfortable asking.

For my part, I am both reticent and overeager to share.

I always find myself answering, “He’s holding steady,” and then launching into all the little negative changes I’ve noticed, interrupting myself to say, “I know this sounds trivial but…”

Because, really, I don’t know how he is.

Ralph is scheduled for his annual testing in two months. As the appointment nears, I find myself thinking about it more and more with both dread and anticipation. (Ralph doesn’t know it is coming up and there is no reason to mention it; either he would quickly forget or the fact of the looming appointment would lodge like a lost jigsaw puzzle piece in his memory, making him anxious on a constant basis.)

Whenever I think that Ralph’s cognitive abilities have slipped, I wonder if I am over-analyzing. This testing will tell me if we are maintaining the status quo. But a sliver of me also wants to hear that my perception of Ralph’s condition worsening is correct.

This is not comfortable to admit. I realize it sounds as if I want Ralph’s diagnosis to be worse than it has been. Maybe part of me does; the Purgatory of our current status quo is certainly preferable to the Hell that may well lie ahead, but the gray haze of impermanence is difficult to sustain emotionally. Sometimes I just want to know the worst and get on with it.

Also I can’t help hoping that once we have definitively crossed the River Styx from MCI to Alzheimer’s, Ralph will be more willing to discuss our situation and plan for the future (ie. leaving the farm) in ways he will not consider now—of course I realize that not only is this wishful thinking but dangerous wishing because what is more likely is that once is denial defense system stops working, a spiral of distress will set in.

So I mostly hope that I am wrong, and that he IS holding steady…that as imperfect as things are, we can continue to muddle along as long as we can. Like any couple in a marriage full of ups and downs.