Even before his neuropsych assessment, I already knew that, with our current science, dementia is progressive and most types of dementia are irreversible. I knew I needed to prepare myself for many challenges ahead. It was still early days for Miklos, even though he would sometimes forget our zip code or even the name of the street we have lived on for almost twenty years. He was still cogent and funny. It was early days for me, as I began to imagine what my life would look like in five years.

We made an appointment with our primary care physician, Rachelle Hanft, for a preliminary assessment. I had already started to accompany Miklos to all his medical appointments, because his hearing is so very bad, that even with the strongest hearing aids available, he strains to hear. He can understand my voice better than others, so I go as his interpreter. For this appointment, I also wanted to be sure to hear everything Dr. Hanft said.

It was in the late summer of 2020, the first year of the great pandemic. He could answer many of the twenty or so questions, but he stumbled on many others. He said the year was 2002. When I told him later what he had said, he assured my that he knew the year and that it had been a slip of the tongue. The short assessment did show decline from a baseline test he had taken some years ago. Dr. Hanft gave us a referral to a neuropsychologist, Dr. Freitag.

Dr. Freitag did a thorough assessment. He also had a copy of a brain scan that had been performed some years earlier. Even at that earlier time, the brain scan already showed dead and dying cells in the area of the brain consistent with Alzheimer’s disease.

The assessment revealed many areas of cognitive deficit, and together with the brain scan, it was conclusive that Miklos was suffering from Alzheimer’s disease. Dr. Freitag offered us some encouragement. Several factors in Miklos’ case were predictive of a slow progression of the disease. His relatively advanced age at the onset of symptoms, his high level of education, his good nutrition, and his exercise habits all were very good signs.

Dr. Freitag recommended Aricept, a drug that slows the progression for many patients. Fortunately, Miklos has shown none of the negative side effects that some have. Is it working? How would we ever know that it wouldn’t have been the same without the drug? It’s not hurting and the co-pay is affordable. We might as well.

Dr. Freitag also recommended some resources: The Alzheimer’s Association, an elder law attorney, and the book The 36 Hour Day, by Nancy L. Mace and Peter V. Rabins.

I promptly joined the Alzheimer’s Association and ordered three copies of The 36 Hour Day so that each of our daughters could have one. That was overkill. My daughters want to be supportive but had no time for and little interest in reading the book.

As I read, I started praying that Dr. Freitag was correct in his disease would progress slowly and that he might die from old age before he reached the highest stages of the disease. I really don’t know whether I would be able to handle spoon feeding my husband or diapering him.