Category Archives: Tracking Changes

Between MCI And Alzheimer’s–Treading In Place But For How Long

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Funny how one sentence can pack such a wallop. The other day I received a flattering comment from Alzheimer’s Wife who writes an elegant blog about caring for her husband with advancing Alzheimer’s. I am pleased that she like my post of course. But all I can focus on and what I keep re-reading is the second half of her sentence, “and this really brings home my life about four or five years ago.”

Will I be living Alzheimer Wife’s far from easy life in four or five years? The scary thought I mostly try to avoid bubbles up. I have read her excellent, low-keyed but insightful blog about dealing with her husband’s advancing Alzheimer’s without quite connecting it to my life with Ralph.

I don’t want to worry about what is coming. I prefer the strange complacency of MCI Purgatory where Ralph and I carry on perfectly reasonable conversations (that we sometimes repeat word for word three or four times in less than an hour), and where Ralph functions responsibly within the parameters of his (increasingly restricted) routine. Where the doctors’ warnings about what lies down the road for Ralph don’t quite resonate as long as Ralph’s tests scores hold steady, even if holding steady means treading water with the help of Namenda and Donepezil.

In MCI Purgatory I can choose not to notice small, undefined changes: how after a burst of intense reading a few months ago, Ralph now barely looks at the pile of books beside his bed; how he no longer bothers to follow the thread of most television dramas, how his favorite activity has become sitting on the porch watching squirrels with his dog—well, to be honest porch sitting has always been one of Ralph’s favorite activities, but he used to sit there listening to talk radio gathering fodder to argue politics with me. The radio is still on but he doesn’t much listen, and we never argue because he agrees so easily with whatever I feel like pontificating about.

But Alzheimer’s Wife has forced me to think about the years to come, to wonder if I should be using this time better—working with more discipline on my writing, volunteering more actively in the community, travelling. I keep making those plans but have yet to follow through.

Mostly Ralph and I live in a kind of calm bubble of daily routine, many of those hours spent nearby but apart. I write down any activities or appointments he needs to complete on an erasable board. Then, while I take care of the loose ends of our business and avoid working on my third novel, he mows grass, does the chores we’ve set together, or sits on the porch.

The one ritual that defines us as a couple, that we still share almost exactly as we did thirty years ago or maybe with improvements, is morning coffee. When we first married, I didn’t drink coffee but made Ralph’s every morning because his first wife did (or he said she did). Eventually I started drinking it myself. Then once the kids were out of the house, Ralph and I started taking turns making it and bringing each other our first cup, then often our second. Morning coffee, Ralph is sharpest and most relaxed. We watch the birds through our uncurtained window, listen to NPR rest stories, talk. This when we discuss any issue I want Ralph to understand and remember, doctor’s appointments, financial decisions, anything about our kids, lately the preparations for my daughter’s upcoming wedding.

In four or five years will we still be able to share coffee? Alzheimer’s Wife can’t answer that question. No one can. But Ralph and I giving up morning coffee together is the Rubicon I dread crossing.

Is MCI Dementia?

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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.

If I Could Stick that MCI Diagnosis Back in Pandora’s Box…

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I just read a couple of study summaries showing that people often have “accelerated cognitive loss” for up to four years, even six years before diagnosis.

Ralph and I were aware of problems a year or so before the diagnosis, but four years or longer? I have to ask myself, why didn’t I notice sooner?

Well, if I am brutally honest, I did notice some changes, but they seemed to be improving our marriage so I didn’t want to look too closely or rock the boat.

God knows, I had already spent plenty of years obsessively analyzing what I perceived as his shortcomings and my weaknesses in our long up-and-down relationship—a marriage between strong personalities who loved each other but were frequently at odds. But about five years ago, with both kids out of the house, we seemed to have entered a second honeymoon stage.

If he forgot what I told him more often than usual, I was used to him not paying attention. After thirty years together, I was used to hearing his stories repeated and repeated; so what if he repeated them twice in a day instead of twice a week. And I was used to our screaming arguments—we both had tempers—but here where the improvement had come: he no longer held onto his anger. If we argued in the evening, he woke up the next morning with no memory that there’d been a scene let alone any lingering hostility. He was more affectionate and more relaxed. (Actually he still is.)

So if he was forgetful or unfocused that was a small price to pay. I did silently question some of the business decisions he was making, but I chose to ignore the small voice in my head warning me that he was being sloppy or inattentive, making faulty investments and letting our family business slide. It was easier to leave business decisions to him. I didn’t want the responsibility. Pure selfishness. Of course ultimately, I ended up stepping in and picking up the slack in a hurry.

What secret fears and anxieties pushed him during those months and years? How much was he aware he was missing or losing? How much was he covering up for what he couldn’t quite grasp any more?

And if we knew it was MCI earlier, would our lives have been better or worse? I thought I was actually relieved to know when we first got the diagnosis, but Ralph was only more frightened.

Perhaps conventional wisdom is right that knowledge and acceptance are the more mature route, not necessarily to bliss but to a quiet appreciation of each day. But sometimes I remember that oddly happy time and wish I’d put off learning the truth; why enter the gray uncertainty we now inhabit any sooner than absolutely necessary?

Diagnosis: Mild Cognitive Impairment Limbo

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In my last entry Ralph realized his memory problem was serious enough to require a doctor’s visit. His doctor Andy recommended we make an appointment with a neurologist specializing in memory issues but warned it might take months before we saw anyone. Meanwhile he urged Ralph to get his cognitive skills tested by a neuropsychologist soon as possible.

The neuropsychologist was not exactly warm and snuggly as he asked Ralph preliminary questions. Ralph was defensive. Well, so was I sitting silently by his side. The tests themselves took three hours;  I waited in the lobby with a book. Driving home, Ralph said the tests were silly. He thought he aced them.

There was nothing silly about the second meeting, during which the psychologist gave us the test results. He did not mince his words in person or in his written report. Although Ralph’s problem solving skills and IQ were still high (though not as high as they used to be), his memory was down in the single digit percentages: MILD COGNITIVE IMPAIRMENT was definite and EARLY ALZHEIMER’S likely.

Ralph was angry, unwilling to accept the results. I didn’t tell him that I secretly felt relief because someone was taking my reality seriously. Or that I was petrified because someone was taking my reality so seriously, that it had a name.

Three months later we had our first appointment with our neurologist at the Memory Clinic.

More tests, same conclusion. But partly because Doc L. was such an easy-going, approachable and likable guy , we came away less worried. Mild Cognitive Impairment didn’t sound so bad coming from him.

A month or so later Doc L. did the spinal tap, a procedure that is relatively new in diagnosing Alzheimer’s but has proved extremely accurate.

A few days after that, I was caught in rush hour traffic and almost didn’t answer my beeping cell phone.But as soon as Doc L. said his name, I pulled over and parked…shocked he was calling me personally.

Ralph’s spinal tap showed the plaque build-up consistent with Alzheimer’s.

“But he doesn’t have Alzheimer’s Disease now.” Doc quickly reminded me. “He is still diagnosed with the condition MCI.” He has the condition, not the disease.

Not yet. Mild Cognitive Impairment– MCI –may not be Alzheimer’s Disease, but the plaque build up confirms that Ralph is not one of those lucky people diagnosed with MCI  who don’t have brain changes consistent with Alzheimer’s and might get better(go to Watching the Lights Go Out for a ray of ambiguous optimism). On the other hand, even for those like Ralph with telling changes, the boundary between MCI and Alzheimer’s is blurry at best, and research shows the timeline for development is unpredictable. It could take two years or twenty. Meanwhile, we have rewritten our wills, closed Ralph’s business and put our financial house in order.

“MCI,” I say when Ralph asks me to remind him yet again about his diagnosis. MCI I tell our kids and closest friends. MCI I tell myself.

No need to speak the word “Alzheimer’s aloud these days. Not yet, I tell myself, not yet.

Ralph Decides: “Something Is Wrong With My Memory”

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So… Ralph’s memory continued getting worse. He repeated conversations over and over. He forgot what day it was. He forgot business decisions. Then an acquaintance invited Ralph fishing in southern Louisiana. Ralph loves fishing and this was a fisherman’s dream trip: catching red fish all day, telling fish stories over great food and drink all night. Ralph was excited if a little nervous (ok, more than a little which I refused to take seriously), especially on the way to airport, but when he called from Louisiana the first night, he said the fishing was terrific and I could hear laughter in the background. I thought, great, he’s made some new friends. As soon as Ralph got home, he admitted the trip was torture. He could not keep track of names and faces. Worse he had trouble remembering which room was his. Smiling ruefully, he described finding excuses to leave the carousing so he could prowl the halls, poking his head into bedroom doors until he recognized his duffel bag and went to bed. Then he added the shocker: “I am going to make an appointment to see the doctor.” It was Ralph’s decision to see his doctor. Neither of us had considered the possibility that I should accompany Ralph to the appointment. Instead I printed out information I’d Googled about Lyme disease  as a cause for memory loss. Still in denial, I told myself Ralph’s doctor would prescribe antibiotics to clear up the problem. “Andy seems to think it could be serious,” Ralph reported almost sheepishly. “He’s going to set up a test.” Andy called us the next night (never a good sign when a doctor calls you at home at night) and suggested we use separate extensions so I could record/remember what he said. He gave us the name of a highly respected neurologist specializing in memory issues but warned it would take months to get an appointment. In the meantime we arranged to meet with a neuropsychologist who could give Ralph a battery of tests for a preliminary diagnosis.

And just like that we fell down the rabbit hole.

In Retrospect– The Beginning of Ralph’s Memory Loss

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While no two cases are the same, the stories we caregivers share about how cognitive impairment crept into our lives are often similar.

Ralph’s memory started to get noticeably worse about three years ago. For the first year and half or so, we joked, haha it must be  Alzheimer’s, whenever he forgot the conversation we had just had. My daughter told me we shouldn’t joke because he was probably worried about losing his memory. But frankly joking and teasing made it feel less serious to Ralph as well as to me.

Gradually his behavior changed. Never the most observant husband, now he didn’t seem to be paying attention at all. He never seemed to listen. He would ask me a question and then ask it again ten minutes later, or five minutes or two minutes.

“I just told you,” I’d sputter. “Well tell me again,” he’d shout.  It wasn’t pretty.

At night as soon as dinner was over he went into the bedroom and watched tv. Often he fell asleep by 8 pm. He pooh-poohed my suggestion to see a doctor.

At the small business we ran together, he did less and less while I worked harder and harder. Yet he would get angry if I questioned him. I began to go around him to get work done.

Not the recipe for a happy working relationship, let alone marriage.

And then the situation became worse.

….to be continued

Into the MCI Maze: Starting From Today

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My husband, whom I am calling Ralph at his request (see “About” above), has the Condition called Mild Cognitive Impairment. His MRI and spinal tap show that he has plaque build up consistent with the disease called Alzheimer’s, but as his doctor repeats, he does NOT yet have the DISEASE CALLED Alzheimer’s. He has  the CONDITION called MCI.

Some people with MCI slip quickly into Alzheimer’s or dementia. Others reach a plateau and stay there. For now, because of his medicines,  because he’s lucky, or because I’m in avoidance, Ralph seems to be on the plateau.

I admit I have not kept track of the changes in Ralph as well as I should have. I missed the starting line. And living with him day to day, I can easily miss  gradual alterations that others who see him less often find shocking. Since greater changes may be coming—ok, will be coming—I need a point of reference going forward, and here it is:

What he remembers:

Facts—He watches Jeopardy every night and is still a strong armchair contestant.

His meds—As long as I fill his weekly pill boxes (Namenda and Donepezil for memory and generic escitalapram for depression and anxiety).

His daily routine—He feeds the dog, takes a walk,  takes a nap, maybe spends a couple of hours every day in his workshop “organizing my tools.” Now that the weather has warmed up, he does a lot of mowing. By mid-afternoon he’s sitting  on our front porch, whatever the weather, listening to the radio and smoking a cigar. (I know smoking is bad but this fight isn’t worth fighting right now.) Mondays he drives himself to see his psychiatrist. He eats lunch at Burger King beforehand and stops at the post office afterwards.

How to drive— His actual driving skills remain strong although he drives more slowly, maybe a good thing. As long as I am there to give directions, he can drive anywhere day or night. Alone, he can find his way to certain key locations : his psychiatrist, Burger King, and our daughter’s house.

What he forgets:

Who people are—not just names but also that certain people exist.

Conversations—often enough that I assume anything I have told him will be forgotten–scheduling details, financial decisions, family issues. Of course, the upside is that I can tell him a secret and know it is safe. Plus he forgets arguments immediately.

Memories, Especially Bad Memories—Despite common assumptions, his long term memory is not much better than his short term but it is selective. He has forgotten quite a few specifics of his past, but they come back with prodding. What he has more trouble remembering are arguments, why friendships went awry and family estrangements occurred. Even when he’s reminded, he doesn’t feel the old angers. An unexpected benefit.

Who he is:

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.

Still passionate about his farm and his dog; still able to fix anything with his hands; still a voracious reader (he says he can’t remember what he’s reading until he opens the book); still adept at analyzing numbers, facts and human nature (even if he can’t remember his analysis five minutes later)—in other words, 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.