My Random Life

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

Chapter Nine

During 1996, after two years of memory and ability issues and an obvious decrease in Belle’s overall functionality, which forced us to create methods to monitor her and assist her, we decided that the doctor that Belle had been seeing for years did not want to believe she could really have a problem.    Even with repeated office visits and her inability to follow time and answer questions posed of her, no additional tests were ordered or conducted.  We no longer believed the behavior we were witnessing was normal aging. Scott decided to seek a second opinion and we discussed the potential change in doctors with Belle.  She was aware something was ‘wrong’ and was willing to visit with another doctor if Scott thought another doctor would be able to help her.   So Scott set up and accompanied her to the appointment.

Based on Belle’s abilities, the doctor recommended several tests, physical and mental.  It was obvious she had reduced abilities and it was important to rule out a physical reason.  Over the next few weeks, the requested tests were performed. When all the results came in, the answer was consistent with what we had begun to fear.  There was not a physical reason for her loss of memory and function.  It was not normal aging.   It was dementia of an Alzheimer’s nature. 

With a diagnosis in hand, we now needed help with retaining and maximizing her abilities. We located a doctor that specialized in geriatric issues that was located not to far from our home and made an appointment for Belle.   Scott and I accompanied her to the appointment.

I know this may sound outrageous, especially after listing all the problems we had witnessed with Belle’s memory and function, but this appointment really opened my eyes regarding how far down the path of ability decline and memory loss Belle had traveled.  As one can ascertain by all the previous chapters, we knew something was wrong and we had created systems to protect and assist Belle in every way that seemed to be required.  But sitting with Belle in the doctor’s office that day, for moral support from my point of view, listening to the simple questions asked of Belle and watching her struggle with answers to questions that were specific to her life and family history, I was surprised and dismayed. 

As the doctor and nurse began to ask questions about Belle’s life and medical history, the problem became the elephant in the room that no one wants to mention.  It was very clear that she could not recall information she had always known.  How many children do you have?  Four she said and then glanced at me for confirmation.  Five, I whispered while holding up my hand to display the number five.   How old are you?  She couldn’t recall and guessed a few years younger than she was.  Personal medical history, family medical history of heart problems, memory problems, etc.   No problems that she knew about, followed by a glance at me with a beseeching look.   Both her parents had medical problems that she was well aware of and certainly had known in the past.  As the doctor completed the standard questioning in a calm and reassuring manner, we stayed in the room with her as she incorrectly answered or did not offer an answer for each question posed.  Sometimes she offered a nervous laugh as a response versus a verbal reply. We provided the answers to the questions she could not provide and corrected information when her answer was impartial or not correct.   I felt defensive during this process, feeling the need to protect Belle from the doctor and his questions.  It became difficult as the questions progressed to allow her to attempt to answer at all.  We began to answer for her to save her the strain.  It was one issue for her to be confused in private with people who cared for her and could protect her, but quite another for her to be confused and unable to answer questions in this, more public and unprotected, manner.   It was a personal reaction to Belle’s plight I had not expected of myself. 

Over the next few weeks, Belle worked with professionals for memory and task testing and had numerous other diagnostic tests completed. The doctor recommended she be placed on a memory medication commonly used for Alzheimer’s patients and that we were told might help to stabilize her abilities. We agreed.  For us, the diagnosis and subsequent report of her abilities was confirmation of the worse possible outcome.  We thought we had a good idea what the diagnosis meant.  We were naïve and although we did not know it at the time, unprepared.

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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 this.  KEEP!  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.

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

Chapter Six

As the months passed, the issue that seemed to give Belle the most difficulty was time. She was losing the ability to keep track of the time of day, the day of the week, or appointments she had set. Since we had been assured this was normal aging and we had no need to worry about increasing difficulties, we developed creative ways to assist her with keeping track of time so she would not miss an appointment or deadline. A special wall clock was purchased with a date and day display. This type of display was common in a watch, but not in a wall clock, and in the days before the internet, hard to locate. We posted calendars with notes regarding appointments, deadlines and debt due dates. Scott’s calendar mirrored hers, so if an appointment was set for her, he could call and remind her of it an hour or two before she needed to leave. Soon after Jim’s passing, Belle had asked Scott to be her Power of Attorney, and he used this document to add his name as a contact for her accounts with the electric company, the telephone company, the insurance company and any other regular debts with scheduled payments. Belle was paying her own bills, for the most part, and Scott was, from time to time, checking to verify payment.

For unknown reasons, Belle’s worry of forgetting to pay an amount due seemed to focus on her safe deposit box. Her box was located at a branch of my employer, so I assured her I could monitor it for her. On numerous occasions, she voiced concern that she would forget to pay the rent and her valuables stored inside would be lost. Although we assured her Scott and I would no allow this to happen, on more than one occasion Belle called me at work, to request I verify she had paid her box rent and I would assure her that all was fine. Belle’s checking account also resided at my place of employment. On several occasions, she voiced concern that she might be able to be talked out of money and this was something she knew she could not afford. So I assured her I would keep on eye on her account and the box rent and I did. I could monitor the account balance and report to her anything I thought looked amiss. I received approval to place a comment on her account which told the front line staff to call me if anyone came in person to conduct a transaction on her account or attempt to access her safe deposit box. At least once a month, Belle would bring up her concern, seemingly as a new concern, and I would reassure her I was on top of it. She said this made her feel safe that I could ‘look out for her’.

As the year passed, we tried additional time tricks. Belle began a medication regime that needed a morning and evening dose. We purchased an alarm clock/radio with more than one alarm time setting and set the alarms to go off once in mid morning and once in mid evening. I wrote out instructions that included why the alarm was going off, how to turn the alarm off and that the alarm meant she needed to take her medications and attached them to the top of the alarm clock. By this point in time, we were already dividing up her medication for her during our regular Sunday evening visit into a case with days of the week stamped on it. In addition to the alarm clock reminder, Scott began calling her every morning around 9 a.m. This call accomplished several things. In addition to verifying she was okay, he would remind her to take her various medications, and if any appointments were scheduled for that day, he reminded her of them. These creative solutions, for the most part worked. Belle continued to live on her own, with some invisible and not so invisible assistance.

Despite all our efforts, Belle’s inability to track time would get past us and create an embarrassing but harmless situation. While no harm was done, she would often be upset by the circumstance. On more than one occasion she appeared at the beauty shop for a hair appointment hours early. On at least two occasions, she was more than a day early for her appointment. Since we shared a hairdresser, Louise would call and let me know of Belle’s arrival. Depending on how upset Belle appeared, Louise would put Belle on the phone so I could assure her, even though Louise had reassured her already, that the appointment wasn’t until the next day or next week and that being early was better than being late. Once calmed down, Belle would say she was just crazy, laugh and head back home. I am sure she had this type of issue occur more than we knew about and that we only found out about some of the instances.

Every year on the third Sunday in May, Jim’s family had a family reunion in East Texas. Attendance at these reunions was highly encouraged and family from all around the country made a special effort to attend. Since Jim’s passing, Belle had traveled with us to the reunion. In May of 1996, Larry planned to attend the reunion but Emma had other obligations and would not be able to attend with him. So Larry planned to fly to out, stay with Belle for a day or two and drive with her to the reunion. Scott, the boys and I would drive over on our own later on. Larry and Scott coordinated Larry’s arrival and Scott assisted Belle with placement of the appropriate reminder note on the calendar, as Larry would be arriving during the work day and Belle would be picking him up at the airport.

On the second Tuesday of May, Scott called Belle as was his habit around 9 a.m. The conversation was normal, with the standard medication intake and other reminders, until Scott asked her what she had planned for the day. This was a standard question that normally received the standard generic answer along the lines of ‘sorting papers’, etc. This time however, Belle stated she was picking Larry up at the airport. Scott told her Larry wasn’t due to arrive until the following week, but Belle was insistent that it was that day and she was ready to go. Scott checked his calendar to ensure he had it correct and then once again told her it was the following week. He asked her which phone she was using and she let him know it was the kitchen phone. Her appointment calendar was posted in another connected room, which could not be reached with the kitchen phone cord. He told her the date, asked her to put down the phone and go look at her calendar. He stated the date again, and told her if she looked at the calendar she would see that next Tuesday’s date was when Larry needed to be picked up at the airport.

When Scott told me about this event, he stated he heard the phone be placed lightly on the counter with a slight click. Through the phone receiver he heard the movement of shoes across the vinyl floor, the rustling of paper, and the sound of shoes on a vinyl floor returning to the phone. As Belle picked up receiver back up, Scott heard a big sigh and then Belle said in an exasperated voice “but I already have my lipstick on.” Convinced that a trip to the airport was not part of her obligation that day, the situation resolved with Scott and Belle laughing about her being crazy and a discussion about what she would do with all her free time that day. Scott laughs now when telling this story to others and in the years that have passed since then, we use Belle’s excuse as an explanation for many things. It symbolizes how badly we want something to be right and how easy it is to get something wrong. If you’ve taken the time to put on your lipstick, you aren’t the problem.

Due to this and other similar events, we began to withhold appointment or event information from Belle until an hour or two before it was to occur. If she was aware of the event too early, she could no longer track how long until she needed to prepare for it, and would fret, believing she had missed it or would be late for it. She was always early, and would pack for a trip weeks early or dress for an appointment days early. So we would only tell her of an event an hour or two before it was to occur to prevent stress for her. She was more likely to have a bad day if she was worried or stressed.

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