Tag Archives: memory loss

What Is Normal Anyway?

people_in_the_park_204264 Is this the couple  Ralph and I are becoming? Jaunty hats and sensible shoes? Would it be so bad if we were them? Don’t they  look  happy and normal? But what is normal?

As I look at the life Ralph and I share now, I can’t help wondering.

When he was first diagnosed with relatively advanced Mild Cognitive Impairment, Ralph was in his mid-sixties and considered young to be jumping on the Alzheimer’s escalator. Now he is approaching 70 and those  symptoms—fogginess, lack of energy, loss of short-term memory, disengagement—that seemed so out of keeping with our peers a few years ago fall more comfortably into the gray area called “the aging process.”

And after all aging  is normal and even desirable  (the alternative being death) although it hits us each differently. For example, I called Ralph’s oldest friend the other day; the two have drifted out of touch over the years but Ralph still talks affectionately about Jim and I thought reconnecting  and reminiscing would be nice for them both to do while Ralph still can. Jim was excited at the prospect of re-connecting with Ralph but we couldn’t actually talk until  he put in his special hearing aid for phone use.

In that moment it occurred to me as it has before that while Ralph remains on his plateau of not-quite-Alzheimer’s-yet, his issues are not radically different from other men his age, at least according to what I hear from the women my age who live with them. So many of my friends complain that their husbands are slowing down faster than they are, that they no longer want to travel, that they’re becoming stay-at-homes, that they are more passive than they used to be, that they need to be cared for, that they require a lot of patience.

And we women have our own issues, or at least I do. The sleep issue—never more than six hours and often less, with the resulting sense of dull tiredness and desire for an afternoon nap. A nap for God’s sake! Ugh. The driving issue—is my driving getting worse or am I just more nervous? The concentration issue—much harder to turn off the wifi and buckle down (although maybe this problem will go away after election day). And of course the fashion issue—not that I ever dressed fashionably or learned to use make up but nowI either look as if I’m trying too hard or not hard enough.

The thing is, I still do feel younger, still want to fight aging, while Ralph has embraced it. Our day-to-day life has fallen into a frankly pretty comfortable pattern set largely by Ralph’s needs and wants. The pattern scares me because I find it enticingly easy to fill so much time dealing with minutia concerning managing Ralph’s care, our finances and our household, especially since my social life has actually expanded as Ralph’s has contracted. If this is this my new normal, it is not all bad? But I worry, where is my zest for the intellectual and creative ambitions that have always defined me before?

In a weird way I am almost heartened personally by the current election season in which two of my peers slug it out with vigorous, and in one case even brutal, energy (although I’m not saying their “normal” is the one I want). I want to believe I can still find that kind of passion and energy in myself. But maybe not, and maybe that’s okay.

Sorting out what is normal under my circumstances, or what is normal under any individual’s individual circumstances, is not easy, but it is where I find myself.

(PS. Last nightI asked Ralph, as I always do, if he’d talked to anyone during the day. He said no. I checked his phone. There was Jim’s number at the top of received calls; evidently they’d talked for over half an hour.)

A Summer Moment

Here’s a poem for a change of pace. I feel a bit shy posting it here, but It does capture Ralph’s life at this stage of his cognitive impairment better than  a longer explanation perhaps. I have had some trouble with formatting so hope this looks ok….

A Summer Moment

Black birds part the clouds, a river

fast and noisy as Mountain Creek itself

casting its black shadow across the grass.

The noisy rush of wing and throat and beating air

filters through the branches of dogwood and oak.

They come and come and are gone in a rush.

The air goes still.

Out on the porch where you rock and drink beer

the radio talks to you about tornadoes in Texas

and politicians whose name you rarely remember.

The dogs sleep at your feet, their dog breath

thickened by the smoke from your cigarette,

your brain a black river of lost thoughts.

Alzheimer’s Radar?

I attend a reunion of my 20-something daughter’s childhood friends and their mothers. Although we never quite developed enduring independent friendships, I always liked the other mothers a lot and enjoy catching up on our lives over glasses of Chardonnay.

One of my favorite moms, Jane, begins to joke about how bad her memory is getting, how her kids tease her that she has Alzheimer’s because she’s always misplacing her keys and her coffee cup. When everyone laughs, I laugh along, or at least smile gamely.

But self-pitying resentment bubbles up–how can she make light of a situation that feels so heavy to me. Of course, my resentment is patently unfair. Who doesn’t hit 50 and start joking about Alzheimer’s?

I used to kid Ralph all the time about his growing forgetfulness. That is until the day my daughter took me aside to say I should stop the teasing because he was probably terrified. But for Ralph and me, as long as we joked it wasn’t real.  I look at Jane with new concern and sense genuine fear under her lightheartedness.

I don’t know Jane or the other women well enough to share that Ralph and I are coping with Alzheimer’s ourselves, but I am tempted.

Weeks later, I am still wondering if I should I have taken Jane aside and reached out to her.

Diagnosis: Mild Cognitive Impairment Limbo

 

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.

Into the MCI Maze: Starting From Today

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.