Tag Archives: MCI spouse

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.

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.