Chapter Five-Alzheimers Story Sunday, Nov 8 2009 

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

Chapter Five

After our Wyoming trip, we decided, with input from other family members (Emma is in the medical professional field) that it would be appropriate if Belle visited with a medical professional regarding her memory issues and behavioral changes.  Belle had a professional relationship with the internist she and Jim had gone to for years, as had several other relatives and that was well known to the family.  We strongly suggested she go visit him and allow Scott to accompany her.  She agreed.

At the visit, the behavioral changes, including short term memory difficulties, were discussed by both Belle and Scott.  The doctor asked a few perfunctory questions of Belle to determine her memory level.  Although her ability to answer the basic questions was not perfect (some of the questions the doctor did not know if her answer was correct, like – what did you have for lunch?) and no further tests were completed, it was determined that all was fine and that the symptoms we were witnessing were normal aging and most likely stress related.  We were doubtful, but relieved.  This was normal aging and nothing to be concerned about.  A doctor with a history with Belle said so.  We had no real reason to be concerned.

Within a month of that doctor visit, Belle had received an invitation to attend a distant relative family reunion, a branch of her mother’s family she had lost touch with. Belle loved researching genealogy and this reunion would be a great way of doing that along with reconnecting with her relatives.  It was a 4 hour drive away and she wanted to attend although she was concerned (so were we) about her making this trip on her own.  With our relief fresh from the doctor’s mouth, Belle, Scott and I discussed the situation and came up with a plan.  Belle would go and Deacon would go with her.  Although only 12 years old, Deacon knew how to drive (thanks to Jim) and could, if an emergency arose, help out.  He was also a good navigator, so he could assist with a map, in case she became confused.  And lastly, Belle and Deacon would take her newly purchased mobile phone with them, a new fangled devise Belle had trouble with but that Deacon, a child of the electronic age, could use with ease.  The mobile phone would give them a method to stay in touch and was an excellent emergency measure.  Deacon agreed to go along.  We discussed with Deacon what we expected of him and he was well aware, after the Wyoming trip, of some of a Belle’s shortcomings of late.  We stressed how important it was for him to check in with us and to assist Belle “Granny” as he called her, if she became confused.  Scott had Belle’s car checked out and all plans were finalized.  We saw them off on the adventure on a Friday morning.

By Sunday afternoon, when we had not heard anything from them, we doubted our decision. Scott tried calling the mobile phone several times, with no success. He then started a calling campaign to track down the long lost relatives they had gone to visit.  Although we had a few home phone numbers gathered before the trip in case of emergency, no one was answering.  In the days before wide mobile/cell phone usage, if someone wasn’t home, they were not able to be contacted by phone and it might be difficult to track them down.  After an afternoon of calling, talking with distant relatives he had not met, Scott finally located a relative that had seen Belle and Deacon at the reunion.  All had been okay and they had headed home a few hours before.  We were awash with relief.  Later that night, the wanderers arrived home. Everything had gone well, according to Belle.  She had had a good time and felt vindicated that all our worry about her abilities was unfounded.

After leaving Belle, we debriefed Deacon, who knew from the moment they arrived that something was wrong by our concerned faces.  Scott asked why he had not called and checked in as required.  He said that they had no sooner pulled out of the driveway, when Granny told him to turn the phone off to save the battery and she had not allowed him to turn it back on at any time during the trip, as no emergency had occurred.  They had gotten lost once and Deacon had navigated them back to the correct road.  So although we thought we had impressed upon Deacon his inclusion in the trip was to be the adult with all mental abilities intact, the adult by age overruled him.  She was his Granny and in charge. Although he was, at the time, functioning at a higher ability and memory level, by age he was still the kid and followed the adult’s instructions.   Part of his debriefing including his impression of how his Granny was not as sure of herself while driving as she always had been in the past.  (This situation is a good example of the dilemma most children of Alzheimer’s patients encounter, especially during the early stages.  When the person with diminishing abilities and recall is in charge or is the authority figure, how does the caregiver exert authority?  In my experience, there is no answer to this question and it is difficult for both parties to the situation.)

Thoughts as I post this…. Sunday, Nov 8 2009 

Just as when I was working on writing our little story, re-reading it to edit it, brings back a gush of feelings, many of which feel remarkably like a mini version of what I felt at the time we are going through it.

Chapter Four-Alzheimers Story Sunday, Nov 8 2009 

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

Chapter Four

Belle’s relocation to her new home now placed her much closer to us and allowed Scott and/or I to drop by on the way home from work to check on her.  Both of us worked full time in positions of responsibility in our companies, were raising our two sons, attending high school basketball games and maintaining our home and yard along with other family activities.  Now we also began regular maintenance of Belle’s yard and home.  We also began a routine of including her more intimately in the activities of our family and ‘updating’ other family on her status.

We began to arrange things in her life to make the loss of her spouse, transition of her move and her occasional forgetfulness easier for her. We obtained a phone with large speed dial buttons and programmed in our phone numbers.  I created a phone number listing with her new phone number  and address (which she had difficulty recalling) along with all the contact numbers for family and friends, which I had laminated and posted at various locations around the house for easy review and access. Although we had regularly spent time with Belle, our level of interaction was increased.  Scott felt responsible for his mother’s well being and intended to ensure that her transition to her new home and life without Jim went smoothly.

And it seemed the transition went well. Belle continued to be active in her church, with her Sunday school class and with her women’s group.  She made friends with her new neighbors.  She spent her days ‘sorting papers’ and ‘going through things’. We were very glad she was active, and taking the time to get things in order, because there were many things that needed sorting (and disposal).  The move had been so fast that we had not had enough time to review things and clean out unneeded paperwork or belongings.    Overall, the move seemed to agree with Belle and we released a big sigh of relief.  Everything was going to be okay. We explained away any inconsistencies in her behavior at every opportunity.  It’s been a tough year, too much change, and we are over reacting, were our most common excuses.

In July 1995, 11 months after the death of Jim, Scott, our youngest son Deacon (aged 12), Belle and I vacationed together.  Larry, the second oldest brother, lived in Wyoming and he and his wife Emma traveled each year to the Snake River south of Jackson Hole, where friends and family gathered to go white water river rafting over the 4th of July week.  We decided to join the festivities and invited Belle to go with us.  Although we visited with Belle frequently and Scott had daily verbal contact with Belle, and we had traveled together on short trips back to East Texas for family reunions, we were unprepared for the frustration of traveling with her on this long distance trip.

During the drive through Texas, New Mexico, Colorado and Wyoming, the repeated reciting of long ago tales and events with different than normal details escalated.   Reminders that we had already heard the story did not prevent the repetition.  Belle developed the uncomfortable habit of reading all bill boards, license plates, road signs, street signs and bumper stickers, often with a lilt of surprise or exclamation in her voice.  She began to interrupt current conversations with comments or observations regarding conversations completed hours before.  Belle had never really been a person that rattled on for the sake of talking nor would she normally, due to her self imposed manners, interrupt conversations of others.  She practiced her ability at conversation and prided herself on being a good, polite conversationalist.  During this trip, however, she seemed to be repeating stories, reading signs out loud, interrupting others and talking in general as if these activities created some level of reassurance for her. The reading of the signs especially seemed to create a feeling of reassurance for her as she said each word or phrase with a surprise or exclamation ending.

When your child does something that is aggravating, you tell him/her to stop it or divert their attention elsewhere. If the activity continues, you might get harsher. It is not really possible to handle an aging parent in this manner and it was not possible for us to handle Belle in any type of harsh manner.  Our attempts to point out that her activities were frustrating or irritating or that quiet time would be great were forgotten almost as soon as mentioned. Our glances at each other to convey our frustrations with the situation increased (and went completed unnoticed by Belle) and we discussed in hush tones out of her earshot, what could be done.  In the end, our son retreated to his tape player with earphones for most of the time spent on the road, while we determined that,  there really wasn’t anything we could do about her behavior.  Although something was wrong, the trip was good for all of us after the last year we’d been through.  We vowed we would survive whatever levels of frustration may occur and have a good vacation.  Along with adopting the grin and bear it theme, Scott and I also developed a personal code to underline our frustration to each other and laugh without cluing in Belle or Deacon.  Scott, in one of many moments of frustration during that rip, created the code by pinching me (hard), looking at me sweetly and declaring in his best voice that I needed to feel his pain.  From that moment on, anytime the frustration grew, we took turns trying to out do the other with a first pinch and laughter would normally ensue. I am sure it saved the vacation.

Once we arrived at the camp site, a no facilities, right there next to the river type place, Belle stayed nights with Larry and Emma in their travel trailer and we stayed nights a short distance away in a small town motel.  This break from each other kept spirits high and frustrations low.  While we spent our days in rafts on the water, Belle stayed on the shore visiting with others in camp. Larry, Emma, and a few others at the camp site, noticed some of the changes in Belle’s behavior.  Although the subject was not dwelt on, questions were posed and comments made by those who did not have daily contact with her and without Belle being present, regarding the inconsistencies in her conversations, how easily she became confused and her short term memory difficulties.   Overall, as with the rest of us, the issues were contributed to the multitude of changes in Belle’s life and the rough past year.

Scott and I kept the code.

Chapter Three-Alzheimers Story Sunday, Nov 8 2009 

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

Chapter Three

In addition to Scott’s closeness to his mother, our oldest son Cooper had an extremely close relationship with Jim, or “Papa” as the grandkids called him.  Since Scott’s parents had moved back into our area in 1983, the close relationships between Scott / Belle and Jim / Cooper led to many of our weekends being spent at Jim and Belle’s country home, in addition to the telephone contact during the week.   The impact of this constant interaction on our marriage is other matter that has little relation to this part of our story except as it will later relate to our involvement with Belle.  However, due to the time spent with and talking to Belle, Scott had maintained his intuitive ability to notice when things were slightly off with her.  As time passed, Scott and I advanced from glancing at each other during Belle’s story telling to discussing other unusual behavior.   And with his antennae up, Scott began to notice more little things. Nothing that was noticed was by itself a reason for advanced concern, but the combination of small items began to congeal our suspicion that something wasn’t quite right.

Belle would tell Scott about an event and regale him with details.  When the information transfer was complete, Belle would start all over again, with hardly a breath in the middle, telling, verbatim, the same sequence of events or story as if the information had not already been recited. Don’t misunderstand; we all repeat ourselves, especially if we have told more than one person and cannot recall who we’ve told and who we haven’t.  (We’ve all been there.) But under normal circumstances when it is brought to our attention that the listener is aware of the details of an event, the teller then recalls having already spoken about it, usually with a laugh included.  This was not the case with Belle.   When this happened the first time or two over the phone, Scott mentioned it to me and we wondered out loud between us what was happening.  The details of her stories were slightly different from the stories we’d heard for years, and she was repeating herself. This type of activity was not normal for her. I began to pay more attention to the conversation between Belle and Scott, providing Scott with feedback, verifying that what he thought was happening was indeed happening and that he wasn’t over reacting or making something of nothing.  When Belle began to repeat a story when speaking to Scott in person, we decided Scott should try little things to see if she knew she was repeating her stories. Belle’s reaction caused us more concern.   After the first telling and while launching into the second, Scott would give clues that he had heard the information already, which she did not seem to notice.  Or he would gently remind Belle that she had just told him the story.  When he reminded her, she would stop talking, hesitate, and glance around.  Then a look of confusion or nervousness would pass over her face.  After a beat or two, without saying anything to knowledge his reminder, she would then continue as if he had not said anything, but with an underlying nervousness in her manner that was also uncharacteristic.  The story would be repeated once or twice more with Scott listening patiently.  I used to joke with him that I wished he had that kind of patience with me.  His reply was his standard regarding Belle: “she’s my mother”.

These were also several instances when we relayed information to Belle that she would, at a later date, be absolutely certain we had not told her.  Her insistence would grow into frustration when we would explain the detailed circumstances of when she was told.  Even with this recount of the event, she could normally not recall it.  Our confidence that she had been told would cause her to doubt herself and on each occasion the situation would diffuse with her laughing and commenting that she must be crazy.  Saying she was crazy became a routine comment for any situation that made her uncomfortable.

The months after Jim’s passing where financially difficult, as money was tight until the country house was sold. Scott began to help Belle, on a limited basis, with her budgeting and bill payment.  We attributed her willingness to let Scott assist with this activity, which once again was slightly out of character, to the stress of her changing financial situation.  While reviewing past payments and check register entries, Scott was surprised to find his father’s writing in the register and upon further inspection, that he had actually been paying bills.  During the years of their marriage it had always been Belle’s responsibility to keep the checkbook register and pay the bills, with Jim carrying around a blank check or two in his wallet for use as needed, and hopefully remembering to tell her he had written a check, so she could account for the item.  But reviewing the most recent register and a few previous registers, along with the checks issued, it was obvious that Jim was handling the checkbook.  This circumstance was highly unusual and we wondered what it really meant.   Later on, with 20/20 hindsight, we decided that the changes we were noticing in Belle had been occurring prior to Jim’s death and he had been slowly beginning to cover for her.   But at the time we just asked Belle why he had been handling involved in the checkbook. Belle could not provide a reason for the shift in responsibility, although she did acknowledge it had occurred and that it was about time he took on some of her duties.

Scott and Susan spent more time with Belle then other siblings during the months preceding her move to her new home in the city.   Susan had begun to notice the repeating of information, the forgetfulness and the confusion that seemed to be involved with Belle’s activities and mentioned it to Scott in passing. However, with Belle in good spirits and some of the issues seeming so intangible, the subject dropped and slipped through the crack of daily life.  During the move, which involved all the siblings, Scott asked everyone if anything unusual had occurred, or if anyone had noticed anything out of the ordinary with Belle.  No one mentioned any concerns or anything out of the ordinary.   Life went on.