Tag Archives: Emory University

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

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

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.

Cognitive Testing-No News IS Good News

shutterstock_299388161-2

Annual Cognitive Testing Update—No News Is Good News

We went for what has been a semi-annual appointment at the Emory Brain Center yesterday and the news is a sigh of relief:

No change in Ralph’s memory from a year ago (ie still “awful” according to N.P. Stephanie, who was smiling because awful is much better than “getting more awful”)

Executive function holding steady

Problem solving holding steady

Mood, if anything, improved

Apathy and low energy, which N.P. Stephanie addressed by lowering the dose of Lexapro. If he doesn’t not appear more anxious, we may cut it out all together (although I suggested that I might require his portion)

Ralph allowed to drive his tractor but not drive his car alone except to the convenience store three miles down our own road

Alice allowed to leave Ralph home alone for several nights at a time as long as there are friends and Alice phone calls to check on his meds and meals

 

Actually the big change was that N.P. Stephanie suggested that, barring a problem arising, we skip our usual six-month visit and wait to return next July.

Learning to Love Ralph’s Mental Check Ups

“We” had “our” six month check up the other day at the Emory Memory Clinic. “We” and “our” are operative words because I probably get as much out of the appointments with our Nurse Practitioner Stephanie as Ralph does. The visits are medical but also psychologically therapeutic and unlike any other doctor visits I have ever experienced.

I admit it never starts well. Ralph asks if we really need to go all the way there (I have learned not to mention the appointment until that morning). And the waiting room time is always uncomfortable, Ralph and I  both secretly looking around at the other couples—everyone present is in a couple whether husband/wife, siblings, parent/child, or cared for/caregiver—trying to guess which person is the patient. I frequently realize I have guessed wrong when the person I assumed was impaired is the one who heads up to the nurse station to sign in. Ralph gets anxious because seeing people with his diagnosis but more advanced into cognitive impairment forces him to consider his own future. I get anxious for pretty much the same reason.

But once we are in the actual room, I am probably more myself than at any other time these days because we are together with someone who knows our situation, who does not look sympathetic but slightly askance at anything we say. This visit Ralph was to have a battery of tests to check his status. The tests take about 45 minutes; I actually thought of sneaking down to the second floor to say hi to a friend who works in the building. Instead those 45 minutes were filled with conversation with Stephanie about my concerns and worries. When I mentioned issues I don’t bring up anywhere else or to anyone else out of some probably misguided mix of embarrassment and guilt—and there are issues I do not bring up in my support group or even here—she responded with matter-of-fact solutions and understanding of someone who has witnessed all the permutations of cognitive impairment. My tendencies toward defensiveness, guilt, and self-justification melted. I could see clearly where I thought Ralph was on the continuum, that his memory seems to have held steady but his energy, curiosity and interest in the world has faded.

And then Ralph returned from his testing in buoyant spirits. He felt he had done really well on the test. And he had. Although he got more questions wrong than he thought, the score on his memory has held steady. (Shout of thanks to Namenda and donepezil.) He still qualifies as Mild Cognitive Impairment and is holding Alzheimer’s at bay.

We are scheduled to return to see Stephanie in six months. She said that if it was inconvenient since we come from a distance, we could skip that appointment. No way. I am looking forward to it.

“In The Zone”

Ralph took his first art class in twenty years this afternoon.

He agreed to go only because our physician’s assistant Stephanie gave him a “written prescription” to take art lessons during our last visit to the Memory Center at Emory.

Ralph has always been a natural draftsman, and in his thirties he took courses from a couple of relatively renowned artist/teachers who gave him real encouragement. Then life got in the way and he didn’t stick to the art. He always said he’d take up the painting again once he retired. But that was before he was diagnosed with (not so) Mild Cognitive Impairment and he has not touched a paintbrush since.

So when he told Stephanie that he had his paints all set up in his office in the barn and was going to paint soon once he had things organized, I probably rolled my eyes. He does go to his office to “straighten and organize” most days, but really he sits and smokes and talks to the dog. I am glad he has somewhere to go and be comfortable. I certainly don’t care that the office will never be organized, but I do fear and sense the mental atrophy setting in.

Like everyone involved with dementia and cognitive issues, I am aware of the benefits of art therapy. [For those interested there is a documentary, “I Remember Better When I Paint” worth checking out as well as numerous articles and essays to be read on-line.] But Stephanie and I knew better than to push that angle with Ralph, who shies away from that word “therapy”.

Instead Stephanie blamed human nature, explaining in the nicest way possible that if Ralph didn’t take an actual class he would never start to paint on his own. She told him that he needed the class to jumpstart and structure his time. (She also prescribed a weekly night out for dinner or a movie, but following that direction has proven harder for reasons I’ll explore another time.) What he would hear as nagging from my mouth became sound advice  when it came to Ralph from an authority figure who also happens to be attractive and charming.

Fortunately, as Stephanie agreed, Ralph doesn’t need to be in a special class for the cognitively impaired. He just needs a class period: A time and place on his schedule; plus an environment with other students good enough that he takes the class seriously but not so good that they intimidate him. Not an easy situation to find in a small town, but two friends separately recommended the same art teacher who has been working with a group of adult students for several years. We talked. I assured her that Ralph was not a beginner, but I also felt obligated to acknowledge Ralph’s M.C.I. just in case something came up. I assured her that no one in the class would be able to tell he had a memory problem. I could hear her hesitation, but she agreed to let him in.

Since I told him that I’d signed him up he has asked with anxious frequency what day the class was, where it was, how long it was, what he had to take to the class, who would be at the class and how good were they at painting.

He has not been asking with enthusiasm. His has been a litany of fears. On the drive to the class this afternoon—“Where is it again,” a moment of silence, “Where is it again?”—Ralph was such a bundle of nerves that I almost gave in and said he didn’t have to go. The gray, drizzly cold didn’t help; bad weather is always an excuse for Ralph these days.

But we made it to the parking lot and he did get out of the car with his supplies.

I sat with my motor running as he walked in, pretending to take a call on the cell phone. By then I was a bundle of nerves myself, the same nerves I remember suffering when each of my kids faced the first day of school. I watched through the window as he trooped into the classroom and walked up to the teacher to introduce himself.

“So how was it?” I asked when he came out two hours later.

I could tell he was in a good mood, but I was not expecting what a good mood.

“Once I got started I was in the zone,” he said and showed me the painting he’s begun. He can’t wait to go back…

How happy-making to offer a success story for a change.

Mourning Ralph’s Memory Loss As Well As My Mother

A friend called to offer condolences yesterday concerning my mother’s death. Having cared for her mother for several years, she reminded me that people who have not been through the experience don’t realize the amount of energy expended. Then she added, “At least you will have new energy now that you are done being a caregiver.”

Not quite. As I explained to my friend, my caregiving has just begun.

Just the day before her call Ralph and I had gone to the Memory Center at Emory for his six-month check up. Although it did feel a bit odd heading out only two days after my mother’s death, these appointments are like gold and I was not about to re-schedule.

It was a rough visit. Although Ralph did not have to take the big battery of tests this time, our NP Stephanie did one brief test, giving him a name and address that he was to remember. A few minutes later he had no clue what she had told him to remember. She offered a clue that might have tipped him off that the last name was his, but it evidently didn’t help since he made a wild guess.

This small memory failure felt more demoralizing than all the previous results we have received over the last 18 months. It was so stark: no retrieval was possible. The box where he’d stored the memory was simple empty and he knew it.

Also upsetting, although a matter of stating the obvious, was Stephanie’s warning about driving. While Stephanie reiterated that Ralph’s motor skills and problem solving are still fine, she said he should limit driving alone because she’s had “dozens” of patients at his level of cognitive ability who became dangerously disoriented when something on a usual route changed; confusion combined with anxiety caused them to drive off course, sometimes for hundreds of miles. “We don’t want to lose you,” she said gently. The truth is that I already do the driving when we’re going anywhere together these days including his last two fishing trips to Florida—actually, the time before last he drove, took a wrong term and got us lost before I used my phone GPS; I drove us down last time. We hadn’t talked about why I’m the driver though and now it was out there on the table. Stephanie agreed he could still drive himself to Atlanta for his weekly therapy appointment, but the writing is on the wall. And Ralph could read it perfectly well. He looked beaten down even as he smiled in jovial agreement.

Then there was the discussion of activities and depression. Ralph’s lack of activity worries her. She has increased his dose of anti-depressant and he reluctantly agreed to sign up for an art class and to go out with me one night a week. This was major: although Ralph, who has some genuine talent, always said he was looking forward to painting in earnest once he had some time, he has not picked up a pencil or brush for two years. I have nagged him about classes of course, but he has refused. I’m glad he has finally agreed, but his meekness was disconcerting. I know that my own emotions are on edge as I deal with my mother’s death, but I could tell that Ralph was processing Stephanie’s words differently than he has in past meetings.

As soon as we were back in the car, he turned to me and asked, “How long do you think I have?”

To live with a modicum of dignity and awareness was the unspoken second half of the question.I answered the only way I could.  “I don’t know.”

Then I drove him home and dropped him off before heading to the funeral home to pick up my mother’s ashes.

Is MCI Dementia?

Several weeks ago Ralph and I sat down with a bowl of popcorn and watched the program “Alzheimer’s – Hope for Tomorrow – Help for Today” on our local public television station. Ralph’s doctor was featured as well as a member of Ralph’s support group.

Despite the optimistic title and some upbeat patient interviews, the program didn’t sugarcoat or patronize those of us in the trenches. After all, for all the studies and research and media attention, the known facts are pretty clear-cut: There’s no sure way to predict when/if MCI and early Alzheimer’s will develop into full-on Alzheimer’s; and there’s no cure despite the drugs and lifestyle changes that slow down the progression for some but not all patients.

It was like watching a car wreck; only the wreck involved my car. I couldn’t tear myself away.

Ralph watched all the way through too, but when I asked him what he thought he said he hated the program. His exact words were “It’s all crap.”

He didn’t want to identify with the people he saw on the screen, even those who seemed to me even less impaired than he is.

What probably put him off most—what frankly made me squirm sitting beside him—was the constant referral to both Alzheimer’s and MCI as dementia.

I have been squirming ever since. DEMENTIA. That’s how to describe Mrs. Rochester in Jane Eyre, the crazy woman in the attic, or my 96-year-old mother in her worst moments. Not Ralph, my careful, rational husband, a fact man who loves historic detail and likes nothing better than to analyze current events. It has never occurred to me to use that scary word dementia for Ralph’s condition…or only in anger and before his MCI diagnosis (when I so easily tossed around damning words that choke in my throat now).

It has taken weeks to steel myself to look into the definition of dementia in terms of MCI. The U.S. National Library of Medicine site lays out the parameters very clearly:

“Mild cognitive impairment (MCI) is the stage between normal forgetfulness due to aging and the development of dementia. People with MCI have mild problems with thinking and memory that do not interfere with daily activities. They are often aware of the forgetfulness. Not everyone with MCI develops dementia.

Symptoms of MCI include:

  • Difficulty doing more than one task at a time
  • Difficulty solving problems or making decisions
  • Forgetting recent events or conversations
  • Taking longer to do more difficult mental activities

Early symptoms of dementia can include:

  • Difficulty with tasks that take some thought, but that used to come easily, such as balancing a checkbook, playing games (such as bridge), and learning new information or routines
  • Getting lost on familiar routes
  • Language problems, such as trouble with the names of familiar objects
  • Losing interest in things previously enjoyed, flat mood
  • Misplacing items
  • Personality changes and loss of social skills, which can lead to inappropriate behaviors”

No surprise that Ralph hits the mark for all four symptoms of MCI.

As for symptoms of dementia, he’s a mixed bag. Fortunately, he does not exhibit any symptoms of moderate dementia so I didn’t reprint them. Comparing him to the early symptoms list I can say confidently that he has no language problems, at least less than I do, and that he doesn’t misplace items any more than he always has, although finding his razor in his sock drawer this morning was perplexing.

He can still drive his tractor and do carpentry repairs. But there’s no getting around that he can no longer do mental tasks that used to come easily–forget balancing a checkbook, he struggles following a movie. He is beginning to forget how to get to once familiar destinations, so I am going with him to get his teeth cleaned next week. And his personality has definitely changed. My “to the moon Alice” Ralph has transformed in an easygoing, appreciative, sentimental, even docile Ralph who is also withdrawn and fearful of anything outside his daily routine.

Although there’s no way to avoid checking Ralph’s behavior against the definition of dementia from now on, I am not ready to add dementia to the vocabulary of my marriage (a resistance I’ll explore in a future blog). And I don’t believe I have to.

Not yet.