For About and By Caregivers

Subscribe to our bi-monthly publication Today's Caregiver magazine
  + Larger Font | - Smaller Font

Caregiver Stories

Share This Article

A Year of Alzheimer's
By Elisa Lewis

(Page 2 of 3)

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 income.

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.

1 2 3

Printable Version Printable Version


Related Articles

In Their Shoes


Follow Us on Facebook Follow Us on Twitter Follow Us on Youtube Follow us on Pinterest Google Plus