But I Already Have My Lipstick On:  Our story of dealing with Alzheimers

Chapter Fourteen

It is my understanding that because each person is different Alzheimer’s impacts each person different.  The overall progression of the disease may be the same, but each person fails to be the person they were before in a different way and time frame.  Up to this point in time, Belle’s symptoms and behavior changes were varied.  Each change by itself did not seem that significant.  All together, however, the changes were adding up.

Belle had always liked children and babies, although I do not recall, during the years before her illness, her paying much attention to the children of others unless they were misbehaving.  Misbehaving children and their parents would receive a withering look of disapproval.  Now, whenever we were out in public a baby or small child would pull her focus and she would point the child out.  This happened in numerous places, such as restaurants.  She would find it difficult to continue with the previous activity, such as eating, once a child or baby was noticed.  If she was watching the child, her focus on the child eliminated her ability to do anything else.  A baby close to us in a restaurant was so distracting for her, that we tended to seat Belle facing away from the people in the restaurant.  Without the distraction, she would be able to eat her meal.

Belle began to struggle with common words.  When her story or comment reached a place where she needed a word she could not think of, she would sometimes skip it and continue, making the conversation difficult to follow or she would replace it with a more lengthy description.  Some of these descriptions seemed to take more effort than the original word would have generated.  As an example, I vividly recall an instance when Scott, Belle and I were in the car together, and we passed a couple with a child in a stroller that drew Belle’s attention.  She pointed to them and asked us to ‘look at the baby on the’ then she hesitated, appeared to struggle for the word she wanted and finished her comment with ‘pathway of concrete’.  The couple and the child in the stroller were on the ‘sidewalk’.  This type of word substitution began to happen more frequently as her illness progressed.  Oftentimes, the word or substitute phrase she wanted never came to mind, even if we supplied some suggestions.

Belle continued her practice of reading billboards, signs, and bumper stickers that had first been so noticeable on the 1995 vacation trip.  But it was apparent that many times, although she could read the sign and pronounce the word or phrase correctly, she did not know what the word or phase meant.  It was as if all the energy exerted speaking the word out loud and removed the energy needed for comprehension.  When it was obvious she did not understand what she read, we began to read things out loud, except when we were in the car, hoping she would retain and comprehend.

A topic discussed before her illness that we had no doubt where she stood, if discussed now would find her opinion changed, often to the extreme opposite position.  She could voice opposite opinions in the same sentence.  Belle had definite opinions, conservative opinions that had not varied over time, until now.  Additionally, she began to voice opinions or make statements on issues that would have been completely out of character previously.  As an example, on a few occasions she stated angrily to me that the Catholics had killed Jim. I recall thinking “where is this coming from?”  Jim was in a Catholic owned/run hospital when he passed, but that was the only relationship between Jim and the Catholics that existed and of course, his death was not related to anything to do with the hospital.  Yet, not only did Belle state it, she appeared to really believe it.

Belle was raised during a time and location when voicing prejudice against others was not uncommon, but in all my years of contact with her, I had never heard her say anything derogatory against Catholics, Jews, Hispanics or African Americans.   During this period of her illness, it was possible she could state something inappropriate and/or offensive to others present.   If a waiter or busboy in a restaurant was a minority, she would watch him closely, as if he was going to do something bad in front of her.  She might even go so far as to point or whisper that we needed to watch him. When Scott and I spoke about this issue, we finally settled on the idea that the façade Belle had built for herself to become the sophisticated person she had been so driven to become was being broken down by Alzheimer’s.  Due to her upbringing, I feel she may have felt some of the things she said about others were true, but the worldly person she wanted to be would never voice these feelings, because it would be inappropriate to do so in public.  The disease removed her ability to distinguish appropriate behavior from inappropriate behavior and thus we heard her say things that were completely out of character and often inappropriate.

Belle also began to display paranoid tendencies.  We discovered she was blocking her bedroom door at night, as well has hiding hammers or other hand tools under the bed.  On one occasion, we had called her several times and had not gotten an answer.  So we dropped in to check on her.  She did not answer the front door.  We entered the house and a quick search revealed she must be in her room.  The door was closed.  When we knocked and tried to open her bedroom door, it would not budge.  We could hear her snoring.  After repeated calls of her name and calling her phone number, letting it ring, we finally woke her up and once up, she had to move a small dresser from in front of the door, along with some fully loaded suitcases used for clothes storage.  Inspection of her room caused us to realize she was sleeping with a hammer under the edge of her bed.  Scott questioned her.  Was she afraid to be alone?  Why was she blocking her door?  Although she stated she was not afraid, and had no recollection of blocking the door, we found the door blocked numerous times after that event.  The hammer was occasionally other tool, but a tool of some sort was always in the area for, we assumed, protection at night.

The medication alarm was no longer working to remind Belle to take her medication.  In addition to his morning reminder calls, where he would listen to her take her pills, Scott worked with the doctor to rearrange her pills schedule to allow for the most important ones to be taken in the evening and would stop by on the way home.  Scott could review her morning dosage to ensure it had been taken and watch her take the evening doses.   As time passed, she would, on occasion hide the pills or pretend to take them by placing them under her tongue and then showing us her ‘empty’ mouth.

Belle was no longer able to distinguish the appropriate treatment of items.  As an example, an old family photograph that she cherished and protected for years would now be written on in ink, defacing the photo.  And in some cases the information written on the photo would be incorrect.  She used packing tape or duct tape to repair delicate items that the tape damaged rather than fixed. Another example of this issue pertains to a nice solid wood entertainment center that Belle had borrowed from us when she moved into her city home.  She drove screws into its surface to hold notes and pictures in place, defacing and permanently damaging the finish on the piece.  These types of activities, once again, were completely out of character for Belle.  Before her illness she would never deliberately defaced the property of others, or damaged a treasured family photo.

Belle began to move and hide things.   Objects in the house were in constant movement and sometimes they would disappear from view, only to reappear again later.  Or we might find a jar of mustard in the china cabinet or the salt shaker in the medicine cabinet.  Most of the time, the objects on the move were no big deal and we became accustomed to things that had always had a proper place now traveling about the house.  In one instance her diamond ring went missing, and we searched for it for days.  After an exhaustive search, we finally gave up, reconciling ourselves to the fact that we might never find it.  Then, as suddenly as it had disappeared, it reappeared, although Belle could not recall that is was missing or where she had found it.  We eventually had a ‘fake’ of her ring made for her to wear.  The original was placed in safe keeping.

The items listed above are a sampling, not an inclusive or exhaustive list, of how Belle’s abilities were deteriorating.  We continued to deny to ourselves how bad the situation had become.   We wanted to abide by her wishes that she live on her own and did everything in our power to allow this to happen or at least create the illusion it was happening.  The changes in her personality were much harder to accept than the decline in her abilities. Even now, writing these items for this document, I am surprised at the excuses we made for these personality changes, events and circumstances of Belle’s disability.  Denial of the depth of the problem caused us to allow her on live on her ‘own’ for too long.