Tag Archives: Alzheimer’s testing

Ralph’s Newest Test Scores-Not Great

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Ralph went in for his annual mental check up last week.

Ralph was first diagnosed with MCI (Mild Cognitive Impairment almost eight years (eight years!) ago. At the time his personality and interests were what they’d always been despite his memory issues. I remember being angry in the months (years?) before his diagnosis, thinking he never remembered what I told him because he wasn’t paying attention, or even less attention than he used to. Getting an actual diagnosis was almost a relief for me—having a name to excuse Ralph’s behavior, at least in one area. He was upset, anxious and scared, but as I kept reminding him, MCI, stood for MILD impairment.

For years Ralph was what one of his former practitioners called her Poster Boy for Alzheimer’s Care: year after year he avoided the cognitive and behavioral slide statistics predict. While I noticed subtle changes—slowing down, turning inward, growing passivity—his actual memory skills held pretty much steady from year to year. Then last year’s tests showed a slip from MCI to Mild Alzheimer’s. Still, MILD, I reminded myself. 

I knew we were lucky yet I have sometimes felt a tinge of resentment when friends, family members, and even professionals didn’t notice the changes I saw. Was I imagining things I something wondered.

At the check up Ralph and I are interviewed/tested separately. Despite having noticed, and written posts about, more recent changes in Ralph—his growing lack of interest in talking on the phone; a drop in his problem solving that shows up as confusion managing minor tasks he used to handle adeptly; and some loss of memory about the far past—I told Dr. K. that despite what I’d noticed, I didn’t expect his test scores to drop. A moment later Dr. S. came in and dropped a small bombshell: Ralph, who has dropped a point a year at most in the past, dropped three points on the 30 point MpCa scale this year, moving from Mild to Moderate Alzheimer’s.

Knowing the numbers doesn’t really change anything. They just acknowledge the changes I already recognized. But I do find myself thinking in new ways about the future and how my needs as a caregiver are bound to change. The last six months of hip and back issues that impede my own mobility—I hope temporarily–have colored my thinking. Last week I was in something of a funk, wondering if I should sell our house, the one I moved us into barely 20 months ago and spent a huge amount of energy renovating. I thought about elderly high-rise living, a place with a memory wing of course. But today, I am more upbeat. There is no knowing the timeframe in which we will be adjusting. All I can do is adjust day to day. So, the other day, after he suffered an anxiety attack while I was having a quick dinner with a friend—fifteen calls I in the space of half an hour inside the restaurant and several more calls after I talked to him because he couldn’t remember what I’d just told him—I bought a white board. Not to remind Ralph to keep to his routine, which would be a waste because he wouldn’t remember to check off activities once he did them, but to make sure he can see in writing where I am at any hour of the day. He loves it.  

I’m sure there are more small innovations to come, and more anxiety.

Ralph’s New Support System, And Mine

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Since moving to Nola in late March, the one worry I’ve continued to have has surrounded Ralph’s Alzheimer’s care. I feared that six years at Emory’s Brain Health Center, surrounded by physicians on the cutting edge of research, had spoiled us although. There were drawbacks to Emory: Neither Rick nor I will miss the three-hour round-trip trek from our farm every visit (a drive that kept Ralph and me from participating in support groups and activities Emory offered); and as Emory’s client load grew, I sometimes felt a little lost in the shuffle. But I knew Ralph was getting topnotch treatment, and it concerned me that while our providers in Atlanta encouraged our move to Nola, they knew of no similar providers in Nola to recommend.

Finally a friend with medical connections recommended one neurologist at Ochsner Hospital who specialized in dementia, but he ended up too busy to see us. Instead, the neurology department assigned us another doctor we knew nothing about. But we needed to see someone since almost 18 months had passed since Ralph’s last “annual” cognitive check up. I scheduled Ralph into a virtual appointment at the end of August—a mistake on my part since Virtual does not work for Ralph who has enough trouble with doctors in person and refuses to (can’t) use any newfangled phone or internet technology. The neurologist asked the right questions and was perfectly pleasant but did not make a real connection with Ralph (i.e. Ralph decided he didn’t like him). I had already silently accepted that Ralph’s Alzheimer’s care would be less extensive going forward; I told myself that, aside from the annual testing, I no longer needed lots of professional input since I was the one in the trenches monitoring Ralph’s daily functioning. So when the doctor said he would schedule Ralph’s cognitive testing, I assumed with equanimity that that’s all it was—testing.

I was pleasantly surprised yesterday to discover I was wrong. It turns out Ralph’s testing was actually the first step in becoming part of the “Care Ecosystem” for brain health at Ochsner. We met with a neuropsychologist who bonded with Rick over dogs, a nurse practitioner who came up with a change in Ralph’s prescriptions that sounds promising, and a Care Team Navigator who says she will be checking in by phone with me on a monthly basis or as needed. Wow! on that last one. I thought outreach support only happened in other countries with better health systems in place.

According to the handout I received, Ochsner’s goal is “to personalize the Care Ecosystem for each patient and caregiver.”  I’m not sure why the program is not better known, but my guess, from the high level of enthusiasm on the staff, is that it may be relatively new.

I am going to do more research on exactly how the program works differently from what Emory offers and will be talking to our navigator more tomorrow. For now I am enjoying my relief that Ralph will be getting good care, and only a 15 minute drive away. And my relief tells me there is something else I was wrong about–for all my declaring that I didn’t need professional support, I did and do. I left the clinic feeling so much less weight on on my shoulders and in my heart.

As for the cognitive testing itself—I’ll need another post to digest the results.

PS A funny typo I caught just in time: The title almost read “Ralph’s New Support System, and Mind”

Marking Ralph’s Alzheimer’s Six Years In

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brain

Ralph usually has his annual cognitive check-up in July, but not this year. Because of Covid we have yet even to meet with our new neurologist.  After several rescheduling, our telemed introductory appointment is now set for the end of August and obviously won’t include intensive testing (at least I hope not—Ralph testing by phone would be a nightmare; zoom is going to be challenge enough).

Gauging where Ralph sits on the continuum these days is not easy. Between his hospital stay and slow recuperation, the long preparation for our relocation, the actual move one day before Louisiana went into quarantine, our new home/life under Covid, and Ralph’s anxiety in adjusting, not to mention my own, I have lost perspective. 

Last year’s check-up was uneventful, so uneventful that I wrote no more than a sentence about it in my journal. I had been concerned that Ralph seemed a little fuzzier in daily interactions but he scored pretty close to what he’d scored the previous years. We were assured he was maintaining a steady but unusually slow progression.

By then I was already house-hunting, and our practitioners felt we were moving at exactly the right time, with Ralph was still able to adapt and adjust to a new place.  I remember discussing that I should teach him the route to the nearest stores and coffee shop, then make sure he carried good, explanatory ID and introduce him to storekeepers and others in the neighborhood so they’d know his situation in case he got lost on a cigarette run. 

Fat chance. In the five months since we moved here, Ralph has taken one brief walk with me three blocks around the corner and back. Cigarette runs are unnecessary because he has forgotten smoking all together, thank goodness, and he has absolutely zero interest in leaving our porch. He has been to dinner at my daughter’s house once, seen his internist once and been to a hospital lab for blood tests once. Otherwise he has been in the house. We did spend a week away with my daughter’s family at a house with a pool to escape the heat, making no stops on the way and never leaving the house once we arrived saw how few others were wearing masks; Ralph enjoyed watching the rest of us splash around though he didn’t dip a toe in the pool himself, preferring to follow his usual routine of wake, eat, nap, eat, nap eat, bed.

But does his increased inactivity mean anything under the circumstances. He seems to function fairly well as long as he sticks to his rote routine, which is not that different than it used to be. The big change is swapping in BoyRalph visits for cigarettes, a clearly positive change. 

The less positive changes are all in the gray, hard to decipher margins.

He has never returned to a life list. He had been getting sloppy about following it and then he was so out of it during his recuperation from the blood infection, and so helpless.  Now I don’t trust him to mark thinks off. Or remember where the list is Or maybe the truth is that I find it easier to give him his pills myself, to tell him to shower, to track his meals that I would to nag him about the list plus the actual behaviors it tracks. He can still make a sandwich for himself at lunch but often asks me moments later if he’s eaten yet. I’ve also taken over feeding his dogs, a minor chore he used to like but never thinks about now. I worry that I’m coddling him, but then I try to stretch his world by asking him to do a minor chore like takeout the recycling and he gets slightly but noticeably befuddled.

He hasn’t paid attention to the world for a while, but now he seems to have lost his visual acuity a certain ability to react and judge. I’ve been filling bookcases the last few days and he doesn’t notice the difference between objects arranged on a shelf or placed there helter-skelter to get out of the way. In some ways those shelves are like his thought process, a random organization of discrete thoughts. He doesn’t always button his shirt correctly–true, neither do I on occasion, but then I am mortified; he could care less. 

But I need to take into account that everyone’s memory is worse these days. Everyone is a little depressed and a little disconnected.  A little spacier than usual. A little sloppier. Where does Covid Brain stop and Dementia begin? 

Thinking about that way, I tell myself that nothing I’m describing here about Ralph sounds that much worse than a year ago. But it is worse. I just can’t articulate or even pinpoint the deeper shift–a letting go, a deterioration. Not only of remembering but in comprehending. Conversation is gone which is sad. More depressing, so is my trust in his reasoning, in his ability to care for himself, to think clearly. Less than a year ago, I was able to leave him with his life list for days at a time. Now I am afraid to leave him alone in the house for more than an hour or two.  I’m afraid that is a marker more important than any test. 

FINDING MYSELF IN RALPH’S TESTING CHAIR

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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.

Ralph’s Annual Mental Check Up

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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?”

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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.