As a nursing home and assisted living
administrator, I had seen many people in all stages of Alzheimer’s,
including those fighting the early stages. I was wondering if it
could be possible that I had early onset Alzheimer’s. I knew that
nouns were the first words lost so I tried to analyze and diagnose
myself. I didn’t dare breathe a word of my suspicions. I didn’t take
my own advice to families, which is to discover Alzheimer’s early
while medications can slow down the deterioration. Certainly this
wouldn’t happen to me, I reassured myself. I chuckled at myself
remembering that while in college I was one of the many students who
took abnormal psychology 101 and thought I had every diagnosis we
studied. I calmed myself, sure that my panicking was making all this
worse. All I had to do was forget about it and push through my fears
and it would go away. It didn’t.
I went to my regular medical appointments and
never said a word. I did ask the doctor if the tamoxifen could cause
weight gain as I had heard. I was summarily dismissed with, “There’s
no evidence of that. You gain weight when you eat too much.” I
wasn’t going to ask any more questions. And I wasn’t willing to
consider stopping the tamoxifen as I thought of it as my lifesaver.
Daily I was reminded that my writing had been
negatively impacted. I couldn’t form a narrative paragraph without
great difficulty. I had ceased marketing my speaking engagements
and hadn’t given a presentation in months. I had become a hermit,
staying away from people due to my fear of making a fool of myself.
This fear of and loss of words was affecting my friendships, my
career, my teaching, my writing, my self concept and ultimately my
Now I stood in the dining room and watched my
husband turn from me, slightly shaking his head as he walked into
the living room. He would never understand, so I can’t tell him how
scared I am. At least with the cancer, it was tangible, and real; it
could be seen and felt. This was in my mind, untouchable, and even
worse, I was losing myself. I had seen so many adult children get
angry at their parent as if s/he was just trying to get to them, to
irritate them. I was afraid my husband was feeling that way with me.
I never did find the ‘puh…’ word, went to the bathroom and cried;
more frightened than ever during the past year that this had been
evolving. I was now losing my beloved, too.
A few days later, I was visiting with a trusted
nurse friend. I burst into tears and for the first time voiced aloud
my dread: “I have had symptoms of Alzheimer’s for months.” I
described them succinctly. We brainstormed that perhaps it could be
side effects of some medications I was taking. Myrna zealously
looked in every nursing and drug manual she had. She found nothing
that could explain my experience. But Myrna, the researcher,
scientist and devoted friend, didn’t give up. She called a nurse who
worked where she had access to an informational, online service.
Myrna described my symptoms: inability or difficulty writing
narrative and word finding. After several anguishing minutes the
nurse called back. Bingo! The tamoxifen can cause such symptoms,
described almost exactly as I had. This time I wept with relief.