Are you in denial?

This is the second in a series of articles written by Frank S. P. Yacino regarding Alzheimer’s disease. He is the husband and caregiver for his wife Barbara, who has been struggling with this disease for over fifteen years.

Prior to this diagnosis family members may have noticed the patient beginning to be forgetful and trying to cover up their forgetfulness with remarks such as “I must be getting old,” or if they were to meet someone whom they’ve known for years would just say “hi, how are you” instead of calling the person by name. Friends and family members may have noticed the patient writing down the names of household appliances as a way of remembering them or writing down names of people that they meet. These are tell-tale signs of a loved one in the early stage of dementia. A person at this stage will be prone to covering up their forgetfulness and find an excuse for doing what they did or what they said.

The above is how my wife Barbara acted in the earliest phase of her dementia. She was a pro at covering up everything that she did and said. At first we would make light of this behavior because we had not experienced this disease in our immediate family. However, after several years of this behavior, Barbara was given a test in October of 1997 by representatives of Mclean Hospital and she was found to be in the early stages of dementia. This led to many physical and psychological tests, brain therapy, and CAT-scans to confirm what the doctor had diagnosed. This went on until June of 2004.

Unknown to me and the rest of our family, Barbara was aware of this abnormality with her memory earlier than the date of her test. One of our daughters had been cleaning our attic in late May of 2012, in preparation of obtaining items for a yard sale we were going to have, and came across some hand-written notes Barbara wrote in January of 1992 where-in she wrote, and I quote, “Because I am at the age where I have a hard time remembering what has gone on from day to day I have decided to write a monthly diary of events I would like to remember. I was going to do it at the end of each month but decided it would be better to do it every half month. So here goes.” Her writings went until April 12, 1992. In 1992 Barbara was only 57 years of age. This disease has been known to afflict persons who are in their mid-forties. There is no age barrier.

Prior to finding this document I had found some calendar planning books in Barbara’s bureau drawer and in a cabinet near the couch that dated from 2002 through part of 2007 wherein Barbara wrote down some activities of the day, such as trip she made with me and other family members, whether just a ride or a shopping trip, going to church, going to the doctor, vacations, etc. These books also show how Barbara’s mind declined in her writing and spelling of words, clearly indicating her loss of memory to a point where she could not write or spell any more. Her last entry was March 28, 2007. What a difference in penmanship, spelling, and the use of words in that five plus year period. All of those writings tell a very vivid story of a woman in pain and knowing something was wrong and couldn’t figure it out.

As you can see, Barbara wrote from January 1992 through April 12, 1992 and then we have no writings until I found the daily calendar planning books starting in 2002. There’s a ten-year gap unaccounted for, unless we find other documents in the future.

What was I doing throughout this period of time? Four words can describe my demeanor;

I was in denial, plain and simple. Not ever having dealt with this disease I had no clue what we were in for. This was the most difficult time in our lives. Barbara would say things and then repeat them over and over again--------literally driving me up a wall. She was very forgetful and I would get agitated at her.  Now that I know it was the disease doing this to her I regret all the arguments and my walking away from her just not to hear her constant repetition of words. In retrospect, at a time when she really needed me to help her, I was walking away. Today I say of myself how cruel, and wish I could go back and help her. So if other caregivers are reading this now and experiencing what I have described with their loved ones, my most important suggestion would be to have patience with your loved one regardless of how many times they may repeat something to you, because someday that “wire” in their brain to talk will be gone and you’ll long to hear that voice once again. I know I do.