This I Have Learned: Learning About a Disease

Mary Jo Bellner Swartzberg

We are now at the end of the first quarter of 2020 – already? Looking back at 2019, the year seems so far away! For me, there were many take-aways from last year; the most important of them was getting a glimpse into what it would be like to have Alzheimer’s disease.

We recently traveled to Texas to visit relatives. I came down with a sore throat, which morphed into a terrible upper respiratory condition, compliments of flying the “friendly skies.” By the second day of my hacking, my sister-in-law offered me a small pill that her doctor had prescribed for her to control incessant coughing. Never one for taking or using anyone else’s medication, I betrayed my own instincts and took the gelatin pill. After all, I was desperate. Then I waited for the pill to kick in; all I wanted was some relief from the coughing.

When it did kick in, I was in the kitchen talking to my sister-in-law and suddenly I did not know who she was, although I recognized her face. In addition, I did not know where I was. I was immobilized – by fear. The sensation that came over me was, to say the least, disturbing. While the feeling continued for only about 15 minutes it had a lasting impact on me. Not until later, when I researched the drug, did I find out that one of the side effects of the drug (for a minute portion of the population) is hallucinations! My out of body experience left me thinking – so that’s what it’s like to have dementia or Alzheimer’s disease.

I recall once visiting a favorite aunt of mine who lived in Florida. Ginny was named Mrs. Lucas County in Ohio in 1949. She was beautiful and I always enjoyed being around her. When we arrived at her home many years later, we were met by a woman who barely resembled the aunt I remembered. Her clothes were in disarray and we could see that her personal hygiene was severely lacking. In addition, her house was dirty. We asked to take her to lunch and, after much cajoling, she said yes.

During lunch her behavior was quite erratic – she kept looking over her shoulders as if she was looking for someone or something. After leaving my aunt’s home I found myself crying and saying, “This is not my aunt.” It was shortly thereafter that she was admitted to a memory care unit, where she passed on a few years later.

How difficult it must be to be trapped in a world of not knowing one’s surroundings – where one is or who is speaking to you. Conversely, how difficult it must be to have a loved one who does not recognize you or does not remember anything about their life.

Using someone else’s medication is a bad idea, of course. It will never happen again. But because I did and because of the experience I had, I can now say that having dementia or Alzheimer’s disease is very real to me. My experience has made me more empathetic to those who have dementia or Alzheimer’s and, as well, for those who are caregivers of loved ones with memory issues.

This I have learned.