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

Chapter Twenty Four 

Belle’s day care attendance solved the day time issues that were created when she stayed home without assistance.  Susan was thrilled that she could come home to a house that was just as she left it.  The reasons that had created the need to lock up the garage (with the refrigerator in it), the hall bathroom and Susan’s bedroom not longer existed during a normal work day.  Objects no longer moved from one location to another or disappeared completely.  I was relieved that the need to race home when Belle could not be reached by phone or viewed online no longer existed. We shut down the living room camera and viewing website, as it was no longer needed.  We felt relieved and confident that Belle was safe during the day and that she was well taken care of at the day care facility.  With the exception of while she slept, Belle was rarely alone.

Belle adjusted well to the new routine of attending day care.  On the trip to the facility in the mornings, she often commented about heading off to work or how much work she had to do that day. When picked up in the afternoon, she might comment on how much she had accomplished at work that day.  She liked being ‘busy, busy, busy’. And the facility kept her busy with activities such as jewelry making, painting, and other arts and crafts projects.  She took naps if she was tired, and on pretty days, enjoyed short walks outside in the fenced in recreation area.  In the afternoons, it was common practice for all the attendees to sit in a circle and enjoy music or talk, with a care giver facilitating to ensure all that could join in did so. At times, it seemed that she was reluctant to leave at the end of the day.

Scott and I discussed how well things seemed to be going, and were relieved at Belle’s smooth adjustment to the new routine.  Then, with a large problem solved, another problem appeared.  Susan, who carried the majority of the responsibility for getting Belle to and from day care, had to maintain a more rigid daily schedule to drop Belle off in the mornings and pick her up in the afternoons than she was accustomed to maintaining.  Her life included more spur of the moment activities that she felt she could no longer engage in.  Susan began to ask Scott to pick Belle up in the afternoons, sometimes with notice, so we could plan for it, and sometimes without notice, if a spur of the moment activity was available.  Scott and I stepped in as needed, but Susan resented having to ask for assistance.  Susan voiced her frustration with the situation and Scott agreed to be the responsible party on set days of the week, allowing Susan more latitude with her evenings.  On these days, Belle would normally stay with us through the evening.  Oftentimes Scott would call Susan and offer to pick Belle up one his non scheduled days.   If he wasn’t able to pick Belle up on his scheduled days or was delayed for any reason, I became the responsible party.

Although at this point Belle seemed to have no problem recalling Scott and Susan and how they were related to her, I was one of the first of the family to be lost to Belle.  She seemed to know, most of the time, that she should know me, or that I was attached to Scott in some way, but often who I was and certainly my name was not recalled.  So, on days when I picked her up, I had to ensure I called her name when I entered the room and mentioned things that she recalled so that she would leave with me.  The most common method used to generate comfort for Belle so she would not resist leaving with me was to mention I was there to pick her up to take her to Scott.  She had no problem leaving with me if that was our destination.   My favorite way of ensuring she was comfortable leaving with me was to mention our favorite place to stop on the way home.  So often after calling her name, I would tell her we had a stop to make at the little local hamburger joint for a chocolate shake.  The care givers at the facility, who knew we often did this, would ooohhh and ahhhh and Belle would clap her hands. Then we’d order chocolate shakes at the drive thru and enjoy the cold drink on the way home.    She always enjoyed my bribe, sipping thru the straw until the empty cup noises echoed in the car.

Susan’s discontent and frustration with her responsibility level regarding Belle was on the rise.  Her distress was more than just the limits placed on her for dropping off and picking up Belle on a daily basis and her frustrations began to break through in the manner and tone she used with Belle when Belle was confused, failed to follow directions or failed to recall.  As Susan became increasingly abrupt with Belle, Belle was less likely to cooperate and the situation would often lead to an increased level of frustration for both of them.  Scott was increasingly distressed at the verbally rough treatment Belle received from Susan and began voicing his concerns strongly to me and in passing to Susan.  The caregivers at daycare mentioned on several occasions that Susan could be gruff with Belle when it did not seem warranted. Scott also noticed occasions when Susan was physically demanding when trying to force Belle into shower or when trying to get Belle to obey an instruction.  He began to worry that Susan could not handle the situation and that Belle was declining at a faster rate due to the treatment she received. Scott spoke with Susan a time or two about his concerns, and things would improve for a time, but would slide back quickly to displays of frustration.  This concern was a major issue for Scott and we discussed it frequently.  He began to consider terminating the living arrangements currently in place for the house next door.

As it had generally been our practice to disagree on most topics concerning Susan, I was concerned when he began repeated discussion of the situation next door and his unhappiness about the treatment Belle was receiving.  Scott and Susan had always been close and regardless of the situation, Scott typically protected and defended Susan, even when, in my view, the protection and defense was not warranted.   My relationship with Susan had its rough spots and I could be harsh in my assessments of her and her lifestyle.   Therefore Scott and I rarely discussed Susan or her activities because it was almost certain we would disagree.   When Scott started discussing with me his concerns regarding Susan and her care of Belle, I tried to provide reasonable, balanced assessment of the situation, although I began to fear the arrangement might be coming apart.    Based on my conversations with Scott, it was my perception that Susan felt taken advantage of, even through she had suggested she could care for her mother and had signed on to the task of her own accord.  Scott felt Susan was taking her frustrations out on Belle, and that the overall atmosphere in the house was not advantageous for Belle.

Scott and Susan began to disagree on how Belle should be handled and on the financial arrangements regarding ownership of the house.  Scott understood her frustration, but felt that Belle did not deserve nor was it good for her to deal with undesired treatment. In an attempt to provide relief for Susan in the hope of improving her treatment of Belle, Scott began stepping in, taking on more physical responsibility for Belle on evenings and weekends.   Although Belle spent quite a bit of time with us already, her time with us increased to a new level. Our spare bedroom became her home away from home as she stayed with us for longer and longer periods of time, even if Susan was home. In addition to increased evening and weekend stays, Belle lived with us whenever Susan and her husband vacationed.  Susan worked as a travel agent, which afforded her the opportunity to travel cheaply and often.  Susan and her husband took many short hop weekend trips and at least two overseas trips during the time they lived next door.

The beginning of the end of the arrangement for the care of Belle next door occurred in November 2001.  Our area experienced 14 inches of rain in 3 hours and many of the local streets flooded along with many homes.  Our home had some rain run off water issues in the past and Scott made it home from work in time to trench around our house and prevent the run off water from entering our home.  Belle’s house had not, to our knowledge, experienced any issues of this nature, so no effort was made to check on it until Scott had completed the trenching for our home.  Once he checked on Belle’s house, it was determined that the garage and living room contained water.  Susan’s husband arrived home and together they placed the furniture up on blocks of wood and canned goods to keep the furniture out of the water.  Then they went outside and began trenching around the house to keep more advancing water from gaining entry into the house.

The growing disagreement pertaining to who had ownership rights to the house, including the rights to redecorate the living areas of the home or repair the house in general blazed after the flood.  Susan and her husband had always wanted to make the house their own, while we had resisted any changes, trying to keep what was familiar to Belle in place.  Susan wanted to move into the master bedroom and wanted a bigger say in how the home was decorated.  However, as in the past when she had not had the funds for essential repairs to replace the air conditioning unit or the water heater when they had needed replacement (and which had fallen financially on Belle), Susan lacked the funds for any repairs, such as replacing the carpeting damaged in the flood.  Scott, acting on Belle’s behalf, felt that accepting financial responsibility for the house would provide the decorating rights and control of the house, and it appeared that Susan and her husband were not able and/or willing to accept full responsibility for the house if money was involved.   In the aftermath of the flood, to keep the peace, Scott relented a bit and Susan took control of the decorating of the main living areas of the house.  He remained steadfast on the master bedroom issue and did not allow Belle to be moved into another bedroom.   Some of the living area changes made did not sit well with Scott because they upset Belle.  However, he did not intervene, allowing Susan to redo the living areas of the house as she pleased.  But the shaky underpinning of the house arrangements along with the core of Susan’ frustration regarding her responsibilities with Belle, created a emotional slide that eventually led to the demise of the living arrangements created for the protection of Belle.

In March 2002, four months after the flood, Susan announced without preamble that she and her husband had purchased a home to be built in a new subdivision and would be moving out when it was finished.  She estimated this would occur in July.   She claimed they would stay involved with Belle, and that a room at the new house would be available for Belle to visit, but that she would no longer be living under her mom’s roof and be involved in the daily care of her mother.  Scott and Susan briefly discussed a shared living arrangement for Belle, with the possibility of Belle spending half her time with us and half with Susan but nothing ever came from the discussions, which was not surprising to us.  Scott and I were taken aback at the events, mainly because there had been no mention of the possibility of moving and Susan was supposed to be working toward purchasing the house she and her husband shared with Belle.  Although the suddenness was a surprise, we had felt that something was up over the previous month or two and now we knew what it was.  Scott had been increasingly morose about how things next door had been progressing, and we had discussed on several occasions removing Belle from their care.   So, with the July timeline in mind, Scott and I began discussing alternatives regarding Belle’s care.   The initial plan was to move her in with us full time, and continue her day time day care.  We were in the process of a kitchen remodel that should be complete by July and we should be ready to take on Belle full time in our home.

Less than a month later, Susan and her husband sublet a furnished apartment and moved out of Belle’s house.  Susan told us of their decision and move, and that they would no longer be caring for Belle when we saw them loading their belonging to move them into storage.  As she loaded her belongs, Susan commented that taking care of Belle “wasn’t what she had planned for her life”.  Once again taken aback by the suddenness of the event, we reacted by immediately moving Belle into our spare bedroom.  So, now, in additional full time financial responsibility for Belle, we assumed full time physical care of her.