Did we talk about it, then or later, facing together what such an incident might imply? Some couples would have. Our relationship was close; the love between us very strong, going back to one mild October night in 1940, on the porch of a house on Moore Street in Princeton, when we made our commitment to each other. Martha was a sophomore at Westminster Choir College and I a graduate theology student. Over the years we shared in much of our work, and in the decisions of raising our six children; but this was not something we could discuss.
The children grown and gone, Martha and I were living in an adult community a dozen miles from Princeton. I talked with our family doctor and, encouraged by him, went with Martha to see a neurologist. Martha submitted to a cranial MRI; she found the closed-in feeling and the noise unbearable and declared that she’d never go through that again. The neurologist, if he suspected Alzheimer’s, did not mention it. He took a low-key approach, evidently meant to be calming and reassuring. He wrote that he would be glad to see Martha again, but, for now, would treat her with “benign neglect.”
Was a problem becoming noticeable? I thought not, inclined to overlook some signs at home of misjudgment or forgetfulness. In our retirement community, Martha, a lifelong musician, was directing the chorus. I was startled one evening when one of the singers, whose husband was a fairly advanced Alzheimer’s patient, said to me privately after a rehearsal, “I know what you have ahead of you.”
I wrote and was directing a play for the ecumenical church, giving Martha a key role because she always had loved drama. But in rehearsal her crucial speech near the end kept coming out garbled, disconnected. “Just stick to the cue card,” I was telling her. “Read it; that doesn’t matter.” She wouldn’t, or couldn’t, seem to do that, even in the final performance.
I began to supervise, as casually as possible, Martha’s cooking and household chores. Routine tasks would get twisted, items misplaced. Reluctantly, I had to think about, and then gradually talk about, making a move. We needed to be closer to one of our children, and in a continuing-care retirement community (CCRC). Our daughter Marilyn lived in Voorhees, an hour’s drive south. We knew the area well. Marilyn told us about a new CCRC only a mile from her family’s home. Four months later we were moving in.
Things went well for almost three years. Martha slowly was losing ground, but still was getting around with a bit of help. We had kind friends, dinner daily in the pleasant common dining rooms, and activities, including a group for residents coping with memory difficulties. (Alzheimer’s was discussed only when we caregivers met separately.) Then, in a hair salon, Martha accidentally was bumped and fell, fracturing a hip — an almost inevitable chapter in this kind of story. Her surgery went well, but the trauma pushed her disease down the road.
Rehab followed in a skilled-nursing facility. Before Martha’s fall, speech had been growing difficult for her — finding the words for her thoughts and putting them together. Now, most of the words, and comprehension of them, seemed to be gone. I’ve always enjoyed writing poetry and found expression through it. This piece, “Evening,” was written as I sat in Martha’s room:
So we’ll talk no more, my love;
The moon is almost down.
Few words are left; none to express
What we have shared of loveliness,
Of swallows skimming grass at dusk,
And firefly sparks among the trees,
Of organ music in a shadowy nave,
One soft light only on your face and hands
And whiteness of the keys.
In our silence, now, I hold you, warm and dear
As always — hold you here, and yet not here —
Your smile flickering on the edge of time,
As you move deeper into the not-time
And I reach you less and less. Love, it’s still you,
Making the passage gently, by degrees.
I’ll make it, too, sometime — we still count time —
And we will talk again; or need no words
For perfect sharing — in God’s harmony.
Martha was now confined to a wheelchair, but we began to work determinedly at therapy — a few steps with a walker, then gradually more. I was able to move her back to be with me in our apartment — my heart’s desire. She could get in and out of our car and could walk into our daughter’s home. Her walking improved, so that she could manage the long corridors to the dining rooms, then leave the walker, to go in on my arm and find a table.
Occasionally there are surprising snatches of memory and recognition. After reading an article suggesting that coconut oil might have some benefits for Alzheimer’s patients, I began to add some to our diet — two tablespoons each, blended into our instant oatmeal every morning. No one claims a miracle, but family and friends remark that Martha often is brighter and more responsive.
Yet, there is the inexorable progress of the disease. It shows itself in sporadic moods of resistance, alienation, even hostility. These are sometimes made more disturbing by hallucinations — troubled ideas about people or things that are out there, beyond the windows and doors, and insistent demands that somehow must be attended to. The words come in snatches, blurred, hardly comprehensible.
Martha generally knows me, sometimes clings to me. I’m grateful for that. But one recent evening, clutching my hand with almost fierce affection, she kept saying, “Call; can’t you call?”
“Whom do you want me to call?”
“Call Don; I need to talk to Don!”It is as in the poem, “Love, it’s still you, making the passage gently, by degrees.” I dread that inevitable degree at which her passage carries her too far — when she no longer can know who I am for her.