Category Archives: Tracking Changes

“So, How Is Ralph Doing?”

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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.

Alzheimer’s Self-Tests–Hmmm

 

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Scrolling on-line this morning, I was amazed at the number of do-it-yourself Alzheimer’s tests “available” and I use that word advisedly since it includes a positive implication that may not be true. I decided to try a couple of tests, in part to see how I’d do and in part to feel a tiny bit what Ralph must feel every time we visit the doctor’s office, not only facing his annual test to recalibrate his level of cognitive loss, but when he has to answer the short list of questions his doctor not so subtly slips in during our interim six month check up.

I took the SAGE (Self-Administered Gero-Cognitive Exam), developed by the Ohio State University Wexner Medical Center plus a test developed by the Department of Veterans affairs that Dr. Oz promotes .

A disclaimer–I am not a fan of Dr. Oz. Maybe that’s why I scored only 59% on the Dr. Oz test the first time I took it. Or maybe it’s because I kind of cheated: I didn’t have the stopwatch the test required so I had to guess how many animals I could name in a minute (full disclosure: while writing this, I had to go back to the site-twice- to see just how long I was supposed to have, thirty seconds? Ninety seconds?).

Of course Dr. Oz invited me to take the test again and also to buy some memory aid products. I nixed the products but I did take the test again, raising my score 71%. This time round, I also realized I had not properly memorized the five (or was it four, I can’t remember) items I was supposed to remember. Tie was an item after all. But I still couldn’t, and can’t, remember the last one.

Taking the Sage test was more interesting because I found myself uneasy and unsure how to answer some of the subjective, non-memory introductory questions. Do I have balance problems? Well, I don’t think so, but I am accident prone, having had two sidewalk mishaps in the last three years—once tripping on my shoelace and once slipping on ice—so maybe I’m kidding myself. Have I had changes in my personality? Yes, and yes, also to whether I have “more difficulties doing everyday activities due to thinking problems”. I like to blame those yeses on my anxiety regarding Ralph, but then again…. My palms were sweating before I even started.

As for the SAGE test itself, I got the first 10 out of 11 questions right effortlessly. But on number 11 I did the unthinkable—I didn’t follow the directions! My shape was right but I missed a step, and as I recall from ninth grade Algebra (or was it Geometry?), skipping the step is bad, bad, bad!

So the good news is that while I didn’t exactly ace my exams, I don’t have Alzheimer’s. The bad new is that if I got this tense taking these tests on a whim, what must it feel like for Ralph taking much more complicated, exhausting tests knowing how much is at stake. Sometimes I get so wrapped up in my own anxiety/resentment/struggles that I lose sight of the existential crisis he faces daily, hourly even, every time he grasps to remember and comes up empty handed.

Alzheimer’s and Politics: Ralph’s Non-Vote

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Well I just got back from voting. Super Tuesday. A big deal.

I live in a voting district so politically lopsided that only candidates from one party (and not mine) run for national and state office. Usually my vote is so irrelevant that I have been known to write in “Anyone But…” on more than one occasion. So, as depressing as this political season has been, I felt a little twinge of excitement knowing that for a change my vote will actually matter.

I asked Ralph if he’d like to vote. After all, he listens to Public Radio every morning and watches the news every night. At various times he has declared Candidate X is definitely his candidate, or sometimes Candidate Y until I remind him he is for Candidate X (whom I am backing). He has laughed at stupid campaign ads and made astute comments about various candidates’ stupid statements. He has always voted.

Ralph said no, he didn’t feel like voting today. Then he asked what the issue was. I said the presidential primary. He still wasn’t interested.

His answer depressed me incredibly. In so many ways politics has defined our relationship from the start and now it is defining us in a different way.

When we met in the early 1970s, as the Nixon presidency and the Vietnam War were both unraveling, our romance centered on our shared political values. Or rather me sharing Ralph’s. We worked in the alternative press, and Ralph was passionate about his views. I remember sitting beside him on a couch as he went on and on about some theory or other while all I wanted was for him to shut up and kiss me.

Cut to the 1980s. Married with kids, and arguing a lot—a lot!!—mostly about decision-making; I found him controlling and he found me unsupportive. What we did not argue about was politics. We were both part of the small minority that voted for John Anderson in 1980 (although I had to look on the Internet just now to remember his name) and we both thought Reagan was not all there (little did we know, ironically enough). Our political agreement was important; I told myself that I could never be married to someone if I didn’t share his political beliefs

In the 1990s came the big shift. We moved to the country (another big argument that lasted for years) and midway through Clinton’s second term Ralph began to call himself a libertarian. “I’m not a Republican. I am Libertarian,” became his mantra. He was as passionate as a Libertarian as he had been when he was a socialist. I did not become a Libertarian, however, and was no longer susceptible to being swayed by any man.

In the first year of the new century, politics turned out to be a wonderful vehicle for arguments. We couldn’t watch the news together without fireworks, and the family dinner table became the set for great shouting matches, as our kids will attest. We railed against each other about taxes and the Mideast (although we still agreed on most social issues). Of course, under the political veneer our arguments were often about unspoken personal grudges and resentments we each nursed.

And now here we are in the most heated political atmosphere imaginable, and Ralph has gone lukewarm. He wants to be interested I think because he asks me frequently, “Who’s running again?” He cannot keep any of the candidates straight, although that may have more to do their deficiencies than with any cognitive deficiency on Ralph’s part.

The thing is, he would have voted today for whomever I suggested. While he listens to the news nonstop, very little of it sticks with him. This is not only a matter of memory. In part, his attention is turned more inward, but also he has a certainly mental hesitancy as if he doesn’t trust his own instincts. As a result I can easily convince him to agree with me, not only about the candidates, but also about any analysis of world events.

He now listens to me rail the way I used to listen when he railed. I admit I don’t mind being having an enthralled audience of one. I like being agreed with. I like being the one spouting righteous certainties. But this strange reversal is more bitter than sweet.

Finding the Right Words for Ralph’s Condition

I have been struggling with terminology lately after reading essays by people who do not want to be called victims or patients just because they live with dementia.

I totally understand. I hate victim theology.

But I am also uncomfortable when I hear the word hero being batted around. Or survivor. As if the world owes gratitude or praise. Why does dealing with a certain disease or a disability make you heroic? Don’t most people deal with something? And what seems unbearable to one person is no big deal to another because everyone’s pain threshold—physical, emotional, and psychological—differs.

I don’t think of Ralph as a victim and he certainly would never describe himself that way. He would say he’s a guy with a memory problem. Of course, that’s not quite the whole story either, but I respect how he sees himself. So I usually don’t say more unless someone presses or unless Ralph is going to be in a situation that might be awkward; for instance his art class teacher knows why he has difficulty finishing each painting and knows she has to tell him he’s ready to move on to the next or he never would—not a simple memory problem but easy to manage. He loves his class. And the paintings once he’s told they are finished.

And Ralph is frankly no hero and has no desire to be one. He does not want to acknowledge anything in common with others in his condition. He won’t attend a support group for MCI/Early Alzheimer’s. He is not interested in educating the public on the condition or talking about it. He also doesn’t have much interest in fighting the manifestations in himself, in exercising his brain or his body. He is going “gentle into that good night” watching the sunset from his chair on the porch.bird night

Ralph is not a victim, not a patient, not a hero. Not suffering from Alzheimer’s or dementia.

I tried out a new term with him the other morning. I explained (for the umpteenth time because this is one fact he chooses not to remember) that, yes, his brain shows the plaque build up connected with Alzheimer’s, that there is no telling how quickly or slowly the Alzheimer’s will progress but so far his meds are holding his memory function steady. He accepted both the facts and the term I offered.

So from now on if anyone asks, Ralph is on the Alzheimer’s spectrum. Not a perfect description, but it works for us.

18 Months Post Diagnosis of MCI–Where Are We in Memoryland?

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I just realized that I began blogging about Ralph and me in April of 2014. Is that only a year and a half ago? It feels much longer, as if Ralph and I have gone through years and years of changes in the last 18 months. At the same time it feels as if the two of us are stuck and not moving forward at all.

FEELS is the operative word. Feelings are subject. Feelings can’t be trusted.

A lot of things happened—deaths, weddings, children moving away, friendships evolving, business crises. The accumulation of events big and small that form our lives. But how much as really changed in terms of Ralph and me. Have we moved deeper into Memoryland.

To gain perspective I went back to my first post to compare and contrast the salient points:

RALPH’S DIAGNOSIS:

Then: He “does not yet have the disease called Alzheimer’s. He has the CONDITION called MCI.”

Now: Still true as of his last test results at the Emory Memory Center

WHAT HE REMEMBERS:

Then: Impersonal facts like those on Jeopardy, His Meds, His Daily Routine, How to Drive

Now: He watches Jeopardy but not so much. He still retains facts, but not quite as many. He still can take his meds from his weekly box. His daily routine looks about the same on the surface although his actual day has shrunk. It is hard for him to get moving before 10 am or stay up past 8 pm. And he does a lot more sitting

WHAT HE FORGETS:

Then: Who people are. Conversations. Memories, especially bad memories…

Now: Fewer conversations are retained. More people and also facts seem lost. Old memories too.

WHO HE IS:

Then: “Sweeter than he used to be; less aggressive; more patient; less easily bored (because he doesn’t remember the twenty minutes of waiting for the doctor once it’s over); more in the moment.

But also less ambitious; less energetic; less adventurous; more passive; more dependent…Passionate about his farm and his dog…able to fix anything with his hands…a voracious reader.”

Now: Here is where the changes start. His personality is if anything even sweeter, even less aggressive. He no longer has an interest in analyzing numbers, facts and human nature. He may still be able to fix things with his hands but he doesn’t have much interest. Changing a light bulb becomes a major occasion, not because he can’t but because “it is so much trouble.” There has been a shift. A subtle withdrawal from the world we share that cannot be measured by memory tests.

OUR RELATIONSHIP:

Then: Eighteen months ago, I wrote, “although I’ve been warned there’s no telling how long before MCI begins chipping more deeply into his identity, Ralph is still himself in the most important ways.”

Now: I don’t know if I can honestly make that statement today. According to tests and my own comparison, Ralph is still functioning adequately with my support, but I have more trouble recognizing the man I married. There is a vacancy, a growing disconnect, that I sense but can’t measure.

Perhaps the greater change is not in Ralph at all, but in me. The relief I felt at first when we finally received a clear diagnosis for Ralph’s cognitive changes has shifted to something between acceptance and resignation. The support he requires weighs heavier.

We get along well on a day-to-day basis We still laugh together, usually in the mornings when he is sharpest, but we have less and less serious conversation either about the world around us or about ourselves. Sometimes, in a burst of ebullience, he’ll declare how much he loves me. And I love him, but the love is different and not exactly ebullient.

18 months ago I was a spouse learning with my husband to deal with his cognitive condition. Now I am not sure how to describe our relationship. I often feel more parental than wifely. But saying so feels (that word FEEL again) inaccurate and unfair. Because whatever we have become to each other and whatever we are becoming together and individually changes every day.

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.

Money Talks….

According to a recent article in the New York Times: “As Cognition Slips, Financial Skills Are Often the First to Go.”  financial cognition is one of the first skills to go. According to Ralph: Money talks, bullshit walks.

When we first met, Ralph was something of a hippie entrepreneur. By the time he was thirty, he’d dropped the hippie part and considered himself a real estate entrepreneur—buying, renovating, managing and leveraging small apartment buildings–while I pursued my less than financially lucrative writing ambitions. Then his longtime bookkeeper quit suddenly and I had to take over the day-to-day bookkeeping. At the time I didn’t want to take on that responsibility, but in retrospect I am really glad I did. When I needed to liquidate the business two years ago, I knew the basics, like where the checking accounts were, but also the larger framework of how to run the business the way Ralph did. He remained the one who made the serious financial decisions, but I watched and learned.

And what I learned was to be obsessively careful. I used to tease him about the way he analyzed and re-analyzed every business decision, going over and over the worst case and best case scenarios, ‘running the numbers’ as he called it. So what struck me in reading the Times article was this line: “It may become more difficult for people to identify the risks in a particular investment, and they may focus too much on the benefits.” Ralph’s last three investments were frankly terrible.

Luckily those were his last investments. Unfortunately, they were his last investments because Ralph’s follow-through was also going. Ralph always took great pride in being “a closer.” So what I saw as his flagging interest in following through caught my eye as a problem sooner than his forgetfulness. I realize now that he probably no longer trusted his own judgment. He went through the motions, but he had checked out at least a year before his diagnosis. He sat in his office reading catalogs and magazines while letting his assistant and me run things. Fortunately, he’d done such a good job training us that we did fine for awhile.

We may have lost some money due to Ralph’s MCI, but I am kind of glad Ralph had that time to loosen his hold on the business. A grace period.

Because once we had the official diagnosis of Mild Cognitive Impairment, there was no pretending. And by the time I decided to sell the business, Ralph’s impairment was greater while his interest in anything financial had dropped to zero. The man who loved to spend days doing profit loss projections can no longer figure the tip on a restaurant tab.