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

Chapter Twenty Five

Susan and her husband disappeared from our resources as helpers. We were disappointed at their behavior and at the suddenness of the departure. The break was so complete that Susan failed to call Belle or give her a card on Mother’s day that year and did not have contact with her or us for almost six months.  Scott was a mixture of emotions regarding this situation.

We created routines for almost all activities involving Belle, so we could tag team our way through the mornings and evenings and ensure her needs were taken care of.  Since she tended to cooperate with Scott with more ease than she did with me, Scott continued to be point man for most issues regarding Belle.  Along with getting her ready to go in the morning, he handled the day to day delivery of her to day care and we shared the afternoon retrieval of Belle from day care.  Scott kept his routine of walking off his frustrations on the jogging paths downtown several times a week, and on those days, I picked her up.

Although Belle had been physically with us at least half of the time prior to Susan’s departure, the room she used as hers was our guest room.  With the transition to full time residence, we moved her bedroom furniture into our guest room.  Her belongings were placed in the room and I decorated her bedroom walls with her family pictures from her previous room, using the same plate rack holders, so Belle could continue her habit of moving items around.  I incorporated some of Belle’s collectible and family items, ones I thought she might recall, into our décor in the main living areas in an attempt to display to her our home was her home.

Since she was no longer able to take care of herself, we determined that her house would need to be sold and we started working on that project along with adjusting to full time care for Belle.  Scott and I shifted through furniture and belongs, determining what should be kept for use, what should be packed, and what needed to be given to others in the family or sold.  A time frame was established for sale of the house and the furniture was divided up between those family members that wanted it or that Belle had designated should receive it.   The issue in the yard that had caused the house to flood with run off water needed attention and Scott coordinated the needed correction.  Other repairs, some of which were to correct the ‘decorating’ Susan had completed on the house before moving, were scheduled and completed.

During the months that followed, we asked as needed for assistance from our available resources, some of which could help with Belle and some of which could help with the sale of the house.  We asked the real estate friend that had helped with the purchase of her city home so many years ago to help sell this house. We engaged my parents more in the process and they assisted us when we asked. Mom helped pack and Dad waited at the house for service people for needed repairs.   We asked for more assistance from Chuck and his family and they would take Belle for a day or Chuck would stop by for an evening and sit with her.  This assistance continued after the sale of the home. We asked for more assistance from Cooper and Deacon.  Cooper was more removed from the situation due to not living at home with us but he assisted with sitting with Granny on some occasions at our home.  During the transition period and during their time sharing the upstairs of our home,  Deacon was invaluable with his assistance with Granny.  They maintained a good relationship throughout and his easy going manner allowed him to work well with her without much display of frustration.

Although she had been living with us half of the time before the full time move in, the move to full time was confusing for her as she still believed she really lived next door.  After dinner in the evenings, Belle would push back from the table and announce it was time for her to go home, she had things to do.  We would gently explain she lived with us now and she would pretend to recall this, often repeating she did not want to be a burden.   And each night the scene would be repeated time and time again.  She was upset the day we arrived home from picking her up from day care and the ‘for sale’ sign had been placed in the yard.  She asked repeated why the sign was in her yard.

Belle became skilled at ‘sneaking’ away from our house and attempting to break into ‘her’ house, fully believing she had somehow managed to lock herself out.  Since normal access between the houses while Belle had lived next door was through the gate in the backyard which Scott had now removed, Belle would often make her way into the back yard and then be confused as to why she couldn’t get to her house.  After she managed to leave our house though the front door without being noticed a time or two, we placed bells on all our doors so we hear the door open if she tried to leave the house when we were not in the room to see her leave.    While her house was still on the market, if she insisted she lived next door, we would unlock the house for her and show her it was empty, once again explaining she lived with us and why.  After it sold and the new owners moved in, we spoke with them regarding Belle’s behavior, on the off chance she would try to break into the house or be found in their backyard.  We reminded her she lived with us each time she tried to return to the house next door or commented on going home. Eventually, she stopped trying to sneak away and go home, although we left the bells on the doors in place so she couldn’t open a door without us knowing about it.

Despite everything and her reduces abilities, Belle still had the ability to surprise me.  May of that year was nice and warm and Belle and I spent some of the early evenings sitting on the front porch swing, watching the neighborhood until Scott would arrive home from his evening exercise.   Sometimes we talked and sometimes we didn’t.  One conversation during this time frame still sticks with me.  As we sat on the swing, Belle once again, said ‘I think I’ll head on home’ and once again I reminded her she lived with us now.  She gave it some thought, frowning slightly and I explained (again) that the house had been sold, that she lived with us, and that she needed some assistance with daily activity like her medications.  I also explained to her that I understood she had problems understanding time and specifically how much time has passed regarding the events leading up to that day.  I stated that I thought losing time in this manner must be difficult.  Belle looked me in the eye, held my gaze for a few seconds and said it was more than difficult, is was frightening.

Her statement was emphatic. This moment was one her of rare moments when she was present.  It stressed for me that there were times when she understood the extent of the decline of her abilities.    Those times did not happen very often and were very fleeting.  After her statement, we sat in silence for a brief moment.  Then Belle turned to me, smiled and inquired “how about we head over to my house?”  And I again explained she lived with us.

A day or two later, after arriving home and heading into the house, Belle grabbed my hand and insisted I accompany her back outside.  She kept tugging on my hand and began leading me toward the front door.  When I followed without resistance, she led me into the front yard, pointed to the survey stakes in her front yard and demanded to know why those stakes were in her yard.  She understood what the survey stakes were and understood that their presence meant the house had been sold.  And she demanded to know why her house was surveyed.  So I told her again.

It was often difficult to know what she would be able to understand and what she could not understand.  It was almost impossible to assume she would not understand something and we found ourselves explaining thing to her in detail hoping this would be the time she understood.  During this period in her decline, she had days when repeated explanation or instructions were required to accomplish the simplest tasks.   Alternatively, she had days when she existed without questioning the activity around her.  She did not question why she needed help getting dressed or undressed, did not question why she needed help taking a shower, did not question wearing protective undergarments, and did not question going to day care.  On these days, she did what she was told to do to the best of her ability obviously not understanding very much of it.   As the first months stretched on, we perfected the routines that centered on her care and time tables.  I continued to use my tricks and methods to gain her corporation in Scott’s absence and will admit to, on more than one occasion, resorting to threatening to tattle to Scott on her to gain her full attention or corporation.  If she recalled anything at all, it was that she did not want to disappoint Scott.

After the bulk of the larger items had been distributed to family members, one of my remaining jobs was sort through the paper of her life and determine if it needed to be kept, and if it needed to be kept, by whom.  Maybe ‘needs’ is a strong word, as some of the items were sentimental, but did not ‘need’ to be kept.  The items I determined would be of interest to others would be given to them. They made the final decision if it is important enough for them to keep.

As with many members of their generation, Belle and Jim kept everything they ever received, I swear.  Cards, letters, notes, clippings, locks of hair, scrapbooks, you name it, and they had it.  I read through quite a few of the various items while sorting them and contact with this level of personal belongings provided me with insight into Belle, her decline, her relationship with Jim and the family dynamic as a whole.  Most of what I read made me feel distressed for Belle.

Throughout their marriage, in almost every instance of Belle writing to Jim, whether in card or letter form, she seemed to be begging for Jim’s attention, gushy with love and innuendo that did not fit the sophisticated facade she had crafted for herself.  This tone became worse during time frames that featured infidelity.   Jim, of course, was not interested in voiced emotion and was very sparing with nice or reassuring things to say. I felt saddened to know this intimate side of their lives, but felt it gave me a better understanding of her.

As I sorted through her things, I also began to see signs of her decline to come in her cards and letters of the past. Based on the extra ‘notes’ she has written in and on some of items, it was also evident she spent much of her time when home by herself, sorting through this memorabilia and trying to remember.  She made notes in shaky handwriting that was obviously added later and, most of the time, getting whatever was written on the item wrong.  Since time is one of the things she could no longer grasp (it was one of the first things to go) notes about when something happened, written over the note made at the time, could not be replied upon.  In the process of trying to remember and reviewing the papers and mementos Belle had actually ruined some lovely sentimental items by writing all over them with wrong information.   Reviewing her notes to herself and her notes on personal items, leads me to believe she was at home by herself longer than she should have been.  She was experiencing more difficulties than we had believed at the time, a problem I feel is common when family members are trying to assess the abilities of a mentally disabled parent.

Belle had pictures of her parents, siblings, children, spouse and grandchildren that were not organized in a way we could use to sit with her and “recall”.   As I sorted through many of these items, I decided it might be nice to create a memory book for Belle that included the pictures of her family.  I started gathering pictures and came up with a plan for creating two memory or picture books for her.  The first book focused on her grandparents, parents, and siblings and the second book focused on her children, grandchildren and great grandchildren.   I made sure as I pieced the books together that I labeled each picture with all the information I had available to me.  As an example, if a picture of a grandchild was displayed, I listed their full name, nickname, age in the picture, birth date and parents.  If I included an old picture that Belle had written info on the back, I placed that information on the page with the picture.  When the books were completed, Belle enjoyed  flipping through them.  At times it seemed that the books seemed to help her recall specific items briefly.  Often if Belle had a family visitor, the books would be used to spur conversation with Belle, allowing the family member to visit with her, even if that visit was in the past.  Since her ability to have meaningful conversation no longer existed, the books were often the catalyst to a pleasant visit or evening.  We spent any an afternoon or evening slowly turning pages, looking at pictures with Belle reminiscing to the best of her ability.

Not long after coming to live with us, Belle developed a habit of telling Scott she was going to ‘whoop’ him, with the accompanying hand motion for spank, if he didn’t behave.  Her statement could pop out at any time, but normally accompanied him directing or assisting her in some manner.  She went so far as to swat him on his behind a time or two in conjunction with her statement.   The first few times Scott thought this situation was funny, but when she repeated this action several times a day for days in a row, he found it difficult to accept.  Scott was no longer a little boy and Belle was no longer functioning as his mother.   Scott and I began to have more conversations regarding his grief at the loss of his mother.  Belle may be present with us, but the mother he grew up with no longer existed.