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

Chapter Eighteen

Overall, the move and the first few months living next door to us was stressful for Belle.   Her functionality reduced  somewhat and we placed the blame on the stress of relocation.  She was disoriented more often than before and had more bladder control issues.  She began to need adult protective undergarments at night.  She needed to be reminded to shower and needed assistance to complete the task. We became more concerned that with Belle’s disorientation that she might be more likely to wander out of the house and become lost in her new neighborhood.  We knew our neighbors, several of which were home during the day, and asked that they be aware of her if she happened to be outside.  We removed the lock on her bedroom door, as she kept locking herself in, especially at night and could not be roused by insistent knocking in the morning.  We were concerned that she would fall and hurt herself and we would not be able to get into the room quickly.  During those first few months, I made several emergency runs, more than normal, to the house when Scott could not reach her by phone.  Most of the time, she was asleep or in the back yard. On two occasions, however, she had locked herself out of the house.  One the first occasion, she was trying to break into our house through a window on the front of our house when I arrived, thinking she lived with us.  My assumption was that, at this early stage of living next door, she was more familiar with our house because of the time she spent with us, than she was with her new home.  The second time, she had already removed a screen from one of her back windows and had stacked lawn furniture together in an attempt to climb back into her house through a window.  On both occasions, she displayed embarrassment and relief, claimed to know she was crazy and as she often did when I ‘caught’ her at something she knew was not right, asked me not to tell Scott.

I had decorated Belle’s bedroom with dozens of framed family photos that at her previous home were displayed all over the home. Since Belle liked to move things around, we installed plate racks on the walls that could hold framed pictures and which allowed her to move the pictures as often as she wanted without placing new holes in the walls. Scott had verbally agreed with Susan that more of her possessions would be used in the general living areas of the home.  The main living areas still contained mainly Belle’s furniture. Belle, however, did not recognize Susan’s items, knew they were not hers, and was constantly moving them to other locations or hiding them away, mainly in her closet.  Susan was faced with coming home each day to wonder what had moved or was missing.   Susan would then hunt the items down and replace them where she wanted them, normally only to have them move again the next day.  Belle was very good at hiding things, and sometimes items would not be located, but might reappear at a later date.   Since Belle had full access to all the rooms of the home, Susan placed a key lock on her bedroom door.  This ensured her possessions were not riffled through, something Belle was also doing, and that Susan’s items remained in her room.  The secured room also provided a safe place for medications to be kept.

Belle’s lunches were prepared in advance and placed in the refrigerator for her consummation at the appropriate time.  Scott would call her and remind her to eat the lunch awaiting her.  She often stated she had eaten it, or would eat it when she got off the phone but it was not uncommon for the prepared lunch to remain in the refrigerator uneaten.

Belle continued to display a slight weight gain as sweets continued to go missing and we, on more than a few occasions, found sweets hidden in Belle’s room.  To combat the food issues, several tactics were implemented.  A key lock was placed on the pantry door and a minimum of foods stayed outside the pantry for consumption during the day.  We also arranged for my mother to visit with Belle twice a week at lunch and eat with her.  After a time, the extra refrigerator in the garage was stocked with the main food courses and the garage door from the house was also key locked.  Belle had begun defrosting all the food in the freezer at one time for dinner that night, even things that had to stay frozen until cooked,  and even though she was no longer cooking.

Belle seemed to enjoy the lunch visits from my mother and thought them something she had set up.   We would arrange with Mother what would be already prepared for lunch and with Mother’s assistance, Belle would act as hostess.  On one of Mother’s lunch visits, Deacon popped over from our house through the back yard gate to join them.  Belle introduced Deacon to his other grandmother as her grandson, much to the surprise of Deacon and my mother.  Deacon laughed and reminded Belle they were both his grandmothers.  At this point in time, Belle recalled that my mother was my mother and that I was attached to Scott.  She knew Deacon was our son.  But the connection that allowed her to recall that this meant that my mother was also Deacon’s grandmother did not work.  Deacon told us later about the incident and stated while Granny had laughed with them, it appeared she did not understand what was so funny.

Belle’s abilities continued to fluctuate. What I have always found hard to describe to others regarding the decline this disease causes is how ingrained some routines and thoughts must be imprinted in us.  One would think that if an individual cannot recall where they live or how many children they have, which is important, they should have already forgotten other things are not as important.  This disease doesn’t cause ‘forgetfulness’ in even, fluid or explainable way.  The randomness of what is lost and what remains behind rarely makes sense.  Additionally, when an individual loses the ability to determine to think things though, it manifests itself in different ways for different people.  The reason behind the action might be lost, but the action itself remains.

Several situations display Belle’s ingrained processes.   As an example, when home by herself, it was not uncommon for Belle to apply an over application of make-up, with heavy concentration on her eyebrows, which since they were now gray, were not as visible as they had once been.     I often wondered out loud to Scott why, when Belle doesn’t need to put any make up on at all, and was also forgetting to bathe or comb her hair, would she feel the need to apply make up, much less applying too much.   I came to believe that her self imagine included wearing make up, and to look her best, she applied it, however inappropriately.   While seemingly harmless to the patient, it can be an unsettling visible reminder of the situation for a caregiver making it hard to deny the decline of a loved one.    To reduce the frustration this type of situation caused for all of us,  Susan removed all makeup from Belle’s bathroom.

Another example of an imprinted idea was Belle’s concern over her weight.  At dinner she would often barely eat her food even though we knew due to the unavailability of food to her during the day, that she had not eaten.  Her food to travel around on her plate, pushed by her fork,  remaining uneaten.  She would offer a bite of her food to us repeatedly, holding out her folk with a bite of food on it, asking us if we wanted it, normally with the comment that she was getting too heavy.   Years of trying to remain trim for her husband imprinted on Belle the need to watch what she ate.  Although Jim was no longer there to dictate to her, and although she consumed sweets at a record pace (even hoarding them), she associated the evening meal with her weight gain and worried with each bite she consumed.

The issue of her pursuit of preparing dinner each night that caused her to remove food from the refrigerator and freezer and leave it on the counter to thaw, when she had not cooked in a very long time, is another example of a process being ingrained in her mind without the ability to execute.    For unknown reasons, these thought process were so basic in Belle that even when she could not recall important things, she still worried about how she looked, what she weighed, and dinner for the family without the ability to control or appropriately execute any of her thoughts.  If I ever have memory loss, I hope I forget to worry about my weight, forget about the need to wear make-up and forget I have to cook, all of which I worry about now.

On one of my emergency runs that fall, I found Belle outside in the back yard.  When I checked the refrigerator, it was obvious she hadn’t eaten, so after a brief conversation outside (it was a hot day, too hot to allow her to stay outside), I coaxed her inside to eat.  As I began removing her food from the refrigerator, she moved up close behind me to help and when I turned our faces were very close together.  It was obvious that something was out of place with her face and in my surprise I blurted out what it was.  I have to state that normally, when we found something out of place with Belle, we were careful to maintain a normal tone and investigate the matter in a calm, non upsetting manner.  Becoming pushy or demanding did not accomplish anything with Belle except to upset her, which meant whatever information we were seeking would be lost.  So, when I blurted out “Why are your eyebrows blue?”  it broke our general rules.  But I did blurt it and she exclaimed “they are!?!” with genuine surprise and we moved toward the bathroom so she could look at them and I could examine them in better light.  As it turns out, she had used a blue ball point pen to color in her eyebrows.  If the goal was to make her light eyebrows more visible, it worked.  We used cold cream and elbow grease to remove the ink for her face.