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

Chapter Seven

Belle began to attempt to cover up her memory and function issues.  While we knew she was experiencing more and more difficulty, causing good days and bad days, we did not know if she knew she was having problems.   We looked for indicators in her actions and speech that might reflect the level of her abilities.  We spoke with Belle frequently regarding how she was feeling and thinking.

Belle’s statements of ‘crazy’, as mentioned earlier, became a standard routine and we had come to feel it was an excuse she used more often than she needed to or should.  Once the term crazy was extended to explain an action or event, no further explanation seemed to be required from her point of view, even though we often sought more information. We thought her use of this phrase was a confidence issue, not an ability issue although as her abilities decreased her confidence in herself decreased as well.   In some areas of function, she began to be very timid.

We noticed that in addition to the crazy excuse often extended, she was also saying things that were obviously not true.  It was not difficult to catch her telling untruths. The incorrect items were small and not necessarily important but based on the issue they related to, there was not really a reason to not tell the truth. We joked to each other that the truth would have been easier to relate than the yarn or tale we received.  When we discovered the first ‘stories’, we thought Belle’s making things up or lying was deliberate.  Why she would lie, we had no idea. Over time we concurred that an obvious, blatant untruth meant we needed to look into the matter further.   We began to understand that this activity was not deliberate, but a result of Belle’s faulty memory and/or reduced abilities.  Most of the time, it seemed she believed what she was saying was true, or at least not an outright lie.  We were careful not to be confrontational or demanding when we discovered an untruth, as there was no reason to be harsh and cause her to be embarrassed or, worse yet, more confused.  Often we felt she was stating something that she felt we wanted to hear, as she knew good from bad, in much the same way a child might understand good from bad.  We believe she did this for self-protection or in some instances created stories due to confusion.  She wanted to be able to answer our questions or fit in when others were around.  She wanted to reason things through on her own.  She desperately wanted to understand. 

Another signal of a bad day was the phrase was ‘my eyes are tired’.  Initially, when we began to hear this phrase, we thought she might have some sort of eye strain or other sight issue.   So Scott made arrangements and accompanied her on a visit to her ophthalmologist.  Her inability to respond to the testing was obvious, but other than the normal issues with her eyes, sight correction and cataracts, her eyes were fine.   It was then obvious that the statement, which she used often, was not truly about her eyes.  We began to monitor when ‘tired eyes’ became part of her conversation and compared notes with others that had frequent contact with Belle.  It soon became apparent that she resorted to commenting about her eyes being tired when she was confused or unable to recall the information she wanted to provide.   Based on her actions, our conversations and the situations that arose, it was my impression she was trying so hard to comprehend and recall that she tired herself out. So the only way she could relate this information to us was to describe how the result felt.  I liken it to thinking so hard on a topic that one gives themselves a headache. 

Whenever anyone spoke with Belle on the phone or in person, and asked what she had accomplished or done that day, the standard response was ‘sorting papers’.  I sorted through papers today, or I kept busy sorting my papers.   She was always making headway on the mounds of paper and other miscellaneous items that 50 years of marriage and 70 years of life generate.  After a time, when we saw no evidence of any papers ‘being sorted’, leaving the house or any other headway being made,  we would press a bit harder with our  questions.  What kinds of papers were you sorting?  Did you throw any papers away?  Her answers remained generic.  MY papers, she would insist and after a while we began to realize that no ‘sorting’  was occurring, much less sorting for the purpose of disposal.  This type of non specific answer became common place for any question asked, and although hard to pin point when she had actually completed or at least started a task, we understood she was answering to the best of her ability.    

Other indicators of waning abilities were more visible. When mail would be delivered, she would go through it and write notes to herself so she could remember the item or know how to handle it the next time she saw it.  When Scott received a call from her insurance agent stating a premium had not been paid, we sorted through stacks of bills, solicitations and junk mail with notes to herself written on them.  Belle, ask Scott about thisKEEP!  VERY IMPORTANT! Belle, you need to pay this one where typical of the notes we found.  Belle could no longer distinguish the difference between important items and solicitations or junk.  ‘Important’ or ‘ask Scott’ might be written on obvious junk mail addressed to current resident or occupant as well as a notice for her insurance premium or electric bill.  She had also mistaken solicitations from political candidates or the Republication party as bills that were due and sent them a check.  Further review revealed some bills were missing completely.  Scott contacted all her billing parties, verified the status of each bill, and had the important items changed to be mailed to our address. From this time on, Susan or Scott assisted with her mail and bill payment with Scott eventually taking over the whole process.     

Belle began to forget that Jim, her mother or other deceased loved ones were gone.  This circumstance normally occurred on a bad day when she had been upset by something else.  She might place a call to Scott and ask him if Jim had called.  Or if we dropped by after work, she would demand to know if we’d heard from Jim.  Each time an episode of this nature occurred, if Jim was the object of her concern, she would be obviously mad at Jim for not calling and for being out of reach.  (That’s one long distance call!) On the best of the bad days, reminding her he was gone snapped her back into the present.  On the worst of the bad days, the fact of his passing was not retained.  From my observation, and I’ve told Scott this many times, she did not ask about him in any tone other than anger.  Forgetting he was gone did not seem to occur when she was happy or sad. For whatever reason, Jim was associated with anger and, by the sound of her voice, obvious distrust.  On occasions when Belle forgot a loved one, such as her mother, was gone, the realization they were gone always hit her hard and she would react as if the news was fresh and recent even if their passing had been years before Belle became ill.

In our attempt to understand her confusion and forgetfulness, we often used logic.    Neither Jim or Belle’s mother had ever lived at the current home, so how could Belle become so disoriented that she believed them there?  Why did she know they were gone sometimes and not others?  Why was she always mad at Jim?  (We thought we knew that answer.) As time passed, we determined that logic did not impact her mental/memory situation.  What was lost one day might be back the next.  What was forgotten might come and go.  What made sense or was logical to us, was not to her.  I went through a phase of attempting to delve into how her mind was working, thinking that if I could understand the how, the why would follow.  I wanted to know how she arrived at some of her decisions or the thoughts she expressed.  If we just knew that, we could better understand her and help her or maybe even prevent the problem.  Scott was the first to express to me that applying logic did not help and that while it was admirable I wanted to understand how her mind worked, it was just not possible to understand the brain when it is not functioning properly.  I, over time, came to agree with him although I still approached my attempts to understand Belle and her activity from a logical standpoint.