Chapter Twenty Five-Alzheimers Story Monday, Dec 7 2009 

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.

Chapter Twenty Four-Alzheimers Story Wednesday, Dec 2 2009 

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.

Chapter Twenty Three-Alzheimers Story Wednesday, Dec 2 2009 

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

Chapter Twenty Three

The statistics I’ve heard say that the average Alzheimer’s patient lives for ten years after diagnosis.  Although we felt Belle’s confirmation was late due to her original doctor failing to run even the simplest of tests, we were still 4 years into a 10 year situation.  Belle’s financial situation was strained and we were concerned about having enough money to pay for her care when we could no longer manage her personally.  So, when we decided that the decline in her abilities and her increasing need of assistance with personal function had reached the point that she could not be home all day without assistance, we started researching Alzheimer’s oriented resources for daytime assistance.  We needed someone who could spend time with Belle during the day, ensure she ate, and assist her in the bathroom in case of an accident, as Belle’s bladder control issue had advanced to the point of full time protection.

We were disappointed to find that there were very little affordable or other types of assistance available.  The church Belle had been attending since the 1970’s as a charter member offered no programs to assist elderly members in this manner.  Other kinds of elderly assistance were not designed for individuals with Alzheimer’s and the cost made it prohibitive for daily assistance anyway.  We finally located an elderly assistance program with an Alzheimer’s focus we felt she could afford a few days a week.  It was designed with a situation like Belle’s in mind and was a small local business.  The paid helper could arrive mid morning, make sure Belle was up, make sure she ate her lunch, assist in the bathroom if needed and interact with her.  We decided to give this a try.

Belle became upset each time we mentioned she might need personal assistance.  We had tried to discuss this situation with her previously, outlining some of the issues and gently mentioning the support provided by those all around her but she was completely against personal assistance and the discussion itself would cause a bad day.  She knew she wasn’t all she used to be and would repeatedly state she did not want to be a burden.  From her point of view it seemed that receiving outside assistance caused her think of herself as a burden.  The level of support being provided to her from family was beyond her ability to understand. But to minimize her fear and therefore the impact on her function, we decided that we would get the helper in the house by saying the helper was there to help clean the house.  This little fabrication worked.  Belle agreed we could give this idea a try because she was having difficulty keeping up with all that needed to be done.  (Not that it needs to be said, but Belle wasn’t doing any housework during the day.) Scott and Susan made sure they were at the house for the first time the helper, a very nice older Hispanic lady, was to stay. The first few visits went smoothly, with Belle enjoying the company and assistance.  We were cautiously optimistic about the future success of our plan.

Although the helper was able make sure Belle ate her lunch and Belle seemed to enjoy the additional interaction, as the visits continued, Belle was upset each time the helper sat down or wasn’t cleaning something.  Belle did not trust her and would complain to Scott she was sure the helper was the reason things around the house were missing.  As Belle’s distrust of the helper increased, Belle started being uncooperative, refusing to eat lunch, or refusing assistance when a bladder control incident occurred. It was soon apparent that this opportunity we had hoped would be the answer to the problem of daytime care for Belle was not going to work out.  We had begun to discuss what our next step would be when the helper suffered a major illness and was no longer able to assist.  After much discussion, it was decided we would not attempt to introduce another helper into the situation and that we would look for another alternative for daytime assistance. We had used the service for about three months.

Another elderly assistance program, an adult day care that was funded by the state, had an opening on the north side of town.  Susan had located this program prior to attempting the in home assistance and was wholly in favor of Belle’s attendance. Scott and Susan went to visit it, reviewed the cost as it was not free for Belle and decided to give it a try. Although most of the people attending the facility were not full time, Belle would be there each day while we were all at work.  Susan worked downtown and the facility was not too far from her employment.  She would drop her off and pick her up each day. Belle started attending daily adult day care in the summer of 2001.

Shades of the Past-OMG Monday, Nov 30 2009 

My parents were here for Tday.  Both did several things that semi proved to Scott that my concerns over the recent changes in behaviors are not completely unfounded.  We’ve been down this path before with his Mom and Aunt, and to some degree with my Gma and even in full denial mode, its hard to let it in.  I just want to scream “not again”. Please.  I’ve done my time. Am I really going to spend my whole adult life doing this?

Dad talked the entire time they were there.  All the stories were old, childhood, early marriage, when I was a kid etc.  All the stories we all know by heart, word for word. Except this time, parts of each stories were missing.  He’d start in the middle, so if one did not know the rest of the story one would have been lost.  We weren’t, but that’s not the point.  No one else could get a word in to have any conversation because he wouldn’t/couldn’t stop talking.  It’s always been bad that way, but this was the worst yet.  It was really unpleasant and the evening did not last very long because of it

And Mom.  I think this part was what got to me the most.  On two separate occasions Mom couldn’t carry out simple requests asked of her.  It was dejavu.  Like watching my mother in law all over again.  Keep in mind, if you haven’t read any of the  story I’ve been posting, I spent  quite a bit of time in close contact with someone suffering from dementia.  I know what the dazed confused body movements and facial expressions look like.  I saw it daily for over 12 years. And with both situations on Tday, I felt fear. And dread.

The first: Mom had been asking how she could help out.  So Scott gave her a job.  Scott asked Mom to fold the napkins for the table settings.  She asked how he would like them folded.  He said it did not matter.  She took the stack of napkins, moved them in front of her at the table, then moved them to the lazy susan we have in the middle of the table.  Then straightened them into a nice stack.  Then moved them again, this time to the counter. They where never folded.  They traveled from surface to surface repeatedly, but never managed to ever get folded. 

The second.  There was a basket of towels that needed to be moved out of the kitchen and instead of putting them up (after watching the napkins move around) I just asked her to move the basket into the red room.  (We have two extra bedrooms, one we call the blue room, one the red room.  They are just off the kitchen with the bathroom in between them, in view of the kitchen.) Mom was happy to help, picked up the basket and headed off in the correct direction.  She then headed straight into the bathroom, which is past the turn to the bedrooms and stood in the bathroom holding the basket.  I could see her from the kitchen, standing there, still, trying to think it through.  She came back out of the bathroom, very slowly, exaggerated slowness, looked around, again very slowly,  and then went back in to the bathroom (again past the hall to the red room), hesitated and slowly placed the basket of towels in the bathtub.  I watched all this while I peeled potatoes.  I waited to see if she’d come back out and ask about the red room, or say something to let me know she couldnt’ find it, maybe explain why she put the basket of towels in the bathtub and not the red room as instructed.  She did not. I did not point out the misplacement.  I did just do as we used to do with my mother in law, which was move it once she was not looking.    I watched Mom come out of the bathroom and mix in with the others.  She didn’t mention the basket. 

I finished my kitchen task and headed toward the bathroom to move the towels.  She followed and quietly asked, where did you want the towels to go?  I opened the door to the red room (it’s about three steps from the bathroom door)  and moved the towels into the room.  She murmured she couldn’t recall.

Are either of these things the end of the world?  Nope.  Do either of them mean a thing in the big scheme of things.  Probably not.  Have I seen this type of thing before?  Yes, I have.  Am I  worried about it?  Yes, I am.

I told Scott I was in for each step of his Mom’s trek and I cannot do this one without his total buy in.  When I tell him I need ‘x’, I need it.   He said ok.  Do I need to start repeating to myself, it’s not their/her fault?  Maybe.

Chapter Twenty Two-Alzheimers Story Sunday, Nov 29 2009 

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

Chapter Twenty Two



The extended family in East Texas frequently asked how Belle was doing and I developed a monthly email that updated family members that wanted to know about her situation.  Although I wrote the emails that were sent to the group, I would confer with Scott before sending the email out.   We had determined pretty early in Belle’s illness that Scott and I did not see eye to eye when presenting a description her abilities.   I used to laugh sometimes at how far apart our descriptions of her abilities could be.  I was all about plain talk, and Scott, from my perspective, wore rose colored glasses.  When we spoke about this gap, Scott always stated he wanted to give Belle the benefit of the doubt.   I always said I knew what happened wasn’t her fault.

Up to this point in time, Scott and I had tried to keep including Belle is as many of the extended family events as possible.  The three of us attended family reunions, weddings, and funerals and we assisted with relatives that wanted to come and visit her at home.   Most of the trips we completed where short hops of 3 to 4 hours one way, and for the most part Belle handled these trips with a minimum amount of confusion.  She enjoyed visiting with those familiar to her.  And we were always surprised at how well she could cover when failing to recall who she was visiting with. As always seems to happen, one event brings home the truth of  the situation and one of our trips to east Texas, made the issues Belle faced very clear to me.

Funeral services normally have an order of attention.  Those most directly impacted, such as the immediate family receive the sympathy and support of the attendees.  Other family members normally provide the support and sympathy, and do not receive the same level of attention of the immediate family.  In November 2001, Scott’s cousin, a young mother in her mid 30’s that was also the child of Belle’s brother and sister in law she had stayed with during Susan’s recovery, passed away after a year long illness.  We made arrangements and traveled to east Texas for the funeral service and Belle was with us.  Since so many attendees were traveling to the service from various distances, the church had a buffet meal prior to the afternoon service and we met several of Belle’s siblings along with other cousins in the reception hall during the meal.  Prior to arrival, we had reminded Belle of the purpose of the trip, but once in the reception hall, she could not recall who had passed away.

We had attended several funeral services with Belle since her illness had become more advanced without incident.  However, this gathering was different. Belle was visibly upset at the sight of her saddened brother, the father of the cousin that had passed.  She clung to him, clutching his hand and petting his arm, refusing to release it even at his request.   It was my impression that she believed  her brother was there to support her for a loss she had suffered rather than the other way around.    Scott distracted Belle, gently removing her grasp on her brother, to allow him to receive comfort from others in attendance.  As the event progressed, Belle’s emotional state became more distraught which negatively impacted her other abilities.

We had begun the practice of escorting Belle to the restroom about every two hours in an attempt to avoid accidents, even though she was wearing protection. In public, assisting her in the restroom was always my responsibility.  Before the beginning of the actual funeral service, we suggested a restroom trip, and I escorted Belle to the facility.  The restroom was crowded and we had to wait for a stall.  As we waited Belle began speaking with the lady waiting in line behind us in a manner that led me to believe Belle knew her.  I had been a  family member for many years, but at reunions and other gatherings, I did not always know all the family members.  In this instance, based on Belle’s conversation, I believed Belle was familiar with the lady.  Belle began to attempt to grasp the lady’s hand and illicit sympathy for her own loss, once again seemingly believing that Belle was the one to be comforted.  I realized Belle did not know the lady (and the lady did not know Belle) by the look on the lady’s face.  I interceded, extracted Belle from the lady and ushered her into the now available stall.  Once Belle was in, I apologized to the lady with a brief explanation that Belle was disabled.  The look on the lady’s face told me she was not convinced, and to be truthful, Belle did not appear disabled.  At the graveside service, an immediate family member introduced us to this same lady, who was a friend of the family, who kept her distance and indicated she had already met us.

Belle’s obvious personal grief, confusion and misunderstanding of appropriate actions in this situation caused us to reassess her attendance at similar events in the future.  We wanted to include her as much as possible, but did not want her to be hurt or suffer such feelings of fresh loss and confusion.   We only attended one more funeral with Belle in the fall of 2002, the funeral of her last aunt, to whom she had been very close.    As time passed, we stopped attending other types of family gatherings that required overnight travel.  Belle required restroom and personal hygiene assistance that tended to make road travel difficult and changes in routine by the travel itself created bad days for her.  If we attended an event without her, it seemed that others did not understand why we had not brought her with us.  Rather that trying to explain time and time again the reasons Belle did not travel with us anymore, it became easier not to attend at all.

Chapter Twenty One-Alzheimers Story Sunday, Nov 29 2009 

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

Chapter Twenty One

Every family and individual deals with stress and worry in different ways and every Alzheimer’s patient declines in a different way. The stress in each of us became evident in several different ways.   Watching the decline of a loved one and dealing with the issues created by that decline is not an easy or desired task.

Scott internalized his stress.  He began to suffer from bouts of severe gastro acid reflux with severe heartburn and was assigned a medication regime to attempt to offset the symptoms.  He had events of elevated blood pressure which would result in fatigue and headaches.  He bought a home blood pressure cuff and followed doctor’s orders to track his blood pressure, which seemed to peak in times of high stress. His temper was more likely to flare at small things that were not normally an issue.  Always prone to be judgmental, his opinions on right and wrong, regardless of the topic, sharpened.  Without considering any other aspect of stress, sharpening one’s opinion of right or wrong, proper or improper can cause friction between any two parties.  Although Scott had never been a teetotaler, his intake of alcohol increased.  It came more common for him to consume an evening cocktail, sometimes two, even though this type of activity had not been a habit in our home.  Although understanding through use of rational thought processes that we needed to laugh about some of the things Belle said or did, Scott might react badly if he perceived that his mother was presented in a bad light during a story. Scott’s focus on Belle and her care was the number one item in our lives, with all activity in our lives being centered on that responsibility.  We began to do more things separately, because any joint activity had to be planned to consider Belle.

My stress manifested itself in other ways. I began talking more with others, relaying situations and events involving Belle.  Coworkers became completely aware of my situation at home and with Belle being the focus of our lives; she became more and more the topic of my conversation.  I spent time researching dementia websites and reading stories about caring for suffers and even entered a comment or two on what would now be called a blog.  Scott and I had more disagreements, some about Belle, some not, and were more prone to bouts of yelling at each other for no real reason.  I began to struggle with weight gain, as food became my comfort.   I also started disagreeing with Scott just to disagree or pick a fight.  It seemed that feeling bad was at least feeling something and arguing was interacting.  Previous to this time in our lives, friends were ‘our’ friends.  As we began to do more things separately, we began to have separate friends.  This situation added to the things we could argue about, increasing the stress level between us.

Others associated with Belle’s care displayed various signs of stress as well. Deacon began to act out, drawing attention for his bad behavior.  His grades declined.  He spent an increasing amount of time in his room or at friends’ homes, away from the stress radiating from next door and in our home.  He also became more vocal about our fighting, chiding us for our disagreements.  And it was his comments, in part, that caused us to seek group therapy for assistance, support and venting.  Cooper avoided activities that included Belle, and displayed obvious unease when in her presence.   He commented on our arguing, commiserating with Deacon over the situation Deacon was stuck in. Susan and her husband also displayed signs of stress, with increased drinking and displays of anger at us and at each other.  Susan’s complains about her role and responsibility in caring for Belle became more constant and insistent.  Scott began to complain that Susan was complaining and as their communications focused on Belle, their relationship continued to erode.

Susan developed severe gastro acid issues, which had began with reflux, and developed into a more severe form of esophageal spasms which caused her to, at times, not be able to swallow food, and in the worse cases, vomit whatever she had eaten before it ever reached her stomach for digestion.  After many months of doctor visits, tests and discomfort, and after delayed diagnosis, the problem was identified.  After several non surgical fixes were attempted without success, surgery was recommended.

Plans were discussed and I recall the panic in Susan’s tone when she considered recovering from surgery at home for several weeks with Belle at home with her.  Recuperating would need to be restful and non stressful.  Life with Belle was not restful or stress free.  Our experience with Scott’s back surgery, when Belle was at a higher level of function, proved Susan’s point.  She would have a difficult time with recovery if Belle was home to ‘help’ her. So Scott and Susan discussed the matter at length, searching for a suitable solution to allow Susan the time she needed to recover while not negatively impacting Belle.  Of all the options discussed, having Belle away from home both during the day and at night was required.

Susan suggested and Belle’s brother and sister in law agreed, to invite Belle stay with them for a visit during Susan’s surgery and recovery.   They were aware of Belle’s condition and eroded abilities but felt that the visit would be good for Belle.  They were both retired and therefore home during the day.  Belle would not be left alone while away from home, which would be a concern in an unfamiliar place.  Scott and I discussed the pros and cans and felt that Belle, who abilities diminished whenever a routine was broken, might have a bad day or two upon arrival, but would be able to rebound and enjoy her stay.  Scott spoke at length with Belle’s sister in law, explaining Belle’s situation and decreased abilities in much more detail than in previous conversations.  As they lived about four hours from us, travel arrangements were discussed and agreed upon.  We would meet them halfway at an agreed location and Belle would stay with them for an extended visit of two weeks.  At the end of that time, we would all meet again at the half way location and Belle would return home.

Overall, Belle’s visit with her brother and sister in law was uneventful and calm.   They did learn, however, through personal experience the difference between an intellectual explanation of the effects of the disease, and the day to day function loss of the disease.  When listening to Scott explain Belle’s decline and limitations, Belle’s her brother and sister in law, in good faith, were sure they understood how Belle’s decline had impacted her and were prepared to assist her as required.   As her visit continued, they were surprised and saddened, that this person they both remembered as a vibrant, sophisticated woman was no longer the person they knew.   The changes in her personality and  memory were harder to accept than the decline in her functionality.  Belle’s return home after her visit was uneventful and Susan’s recovery went well.

Over the years since Belle’s diagnosis, I’ve often thought that interested parties think they understand the impact of Alzheimer’s, and I think often intellectually, they do understand it.  But, until one experiences the decline of a loved one first hand, on a day to day basis, true understanding is not achieved.

Chapter Twenty-Alzheimers Story Wednesday, Nov 25 2009 

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

Chapter Twenty

Deacon is an electronic fanatic and approached us in early 2000 with an idea he’d been working on to help us monitor his Granny during the day.  He could install cameras in the main living areas of the house and connect all of them to our computer. The images could then be available on a password protected website which would allow us to check on Belle during the day from work.  We could also set the system up to record during the day and review it later if we needed to, but mainly, the camera would allow us an eye into the house when we were not there.   And it wasn’t very expensive since he could use our current online connection and computer.   Scott and I discussed it and thought Deacon’s idea might have some merit.  We approached Susan and her husband, who obviously, since they lived there, would be impacted by being caught on camera during the evening.  We discussed the pros and cons of placing the cameras and watching the activity that occurred inside the house.   They agreed it was worth a try and decided to try it with one camera in the living room, positioned to see the living room, part of the kitchen and most of dining room.  If we needed to expand our view, we’d consider other locations.  Deacon researched cameras online and found a model that fit our needs.  The camera was purchased and Deacon set everything up.  He also held a training session with all of us so we’d know how to sign on to the website and use the viewing software.  We agreed that if Belle noticed the small camera in the corner of the living room, we would tell her it was a security devise.

It was an interesting experiment and for a time, it worked as we needed it to work.  My emergency runs were less frequent, because we could see Belle even if, for whatever reason, she did not answer the phone.  What we watched on the website through the camera posted in the living room provided insight into and clarification of her abilities, along with allowing us to know she was safe. Sometimes when the phone rang, she would look around the room, seemingly unable to identify what was making the noise.  If she figured it out, her hello would be timid.   If she did not, the phone went unanswered. Sometimes, she answered right away, bright and cheery, and it was obvious by watching her that she knew it was the phone ringing from the very first ring.  Oftentimes, she would sit on the sofa for hours, unmoving.  The first time this happened, I thought the website was locked up and therefore the picture frozen.  After a while I called Scott and he signed in to look, receiving the same picture.  So he called her.  She did not answer the phone, but the ringing phone caused her to move slightly.  It wasn’t the system; she really was just sitting perfectly still.  On his daily lunch calls, Scott provided instructions for retrieving her lunch and could watch her retrieve and eat it.   Sometimes she would say she already eaten and he could verify if she had or had not by rewinding the recording and reviewing the events of the morning.  If she had not, he could direct her by insisting she check the refrigerator.  She almost always would follow Scott’s direction in this type of situation.  He could, without sounding gruff, firmly state a command that she would follow. For the lunch check, most of the time, she had not eaten and he could firmly direct her though eating lunch. If we did not see her for awhile, we could call, and she might come into view.  The angle of the camera allowed a view of the back door, and through the back window, a view of part of the patio, so we could see if she was outside if the phone went unanswered.  We felt the experiment was working.

The system wasn’t perfect however.  One of my emergency runs during this time frame was frightening for Belle and I. I always had a sense of dread when Scott called for a run, wondering if this would be the time that something was wrong and I would find her hurt, missing or dead.  My dread on these emergency runs grew as her condition worsened.  On this occasion Scott signed in to the site and did not see any movement so he viewed the morning’s recording and she was not in view during the morning.  He called several times and received no answer.  After no answered phone or view of her, by noon, he decided to call me.  I went to the house and rang the doorbell.  When I did not get an answer, I used my key to enter.  No lights were on and no one appeared to be home.  I moved through the house calling out, and noted that Belle’s bedroom door was closed.    I called out a few more times and waited for a response.  No answer. I went to her bedroom door and knocked.  No answer.  I turned the door knob and tried to open the door.  The knob turned but the door did not budge.  It took me a moment to realize that the door was blocked from the inside.  I turned the knob and pushed.  Nothing.  I tried pushing on the door a few more times while calling Belle by name. No noise from inside, no movement, no response.  I was finally able to push the door open a crack and look into the bedroom.  Belle was lying on her back, with the covers pulled up to her chin.  She was unresponsive even with all the noise I was making by pushing and banging on the door and calling out her name.  My first thought when I saw her was that she had passed.  I called out through the opening and kept pushing on the door as hard as I could. Although it was obviously blocked with furniture, it gave slightly, so I pulled the door toward me and put my weight behind it, pushing hard against the door and what was behind it.  Finally enough of a crack was created for me to force my way through and I entered the room still calling Belle by name.  As one might determine, this whole process had not been quiet.  As I reached the side of her bed, she opened her eyes, starling me enough that I jumped.  She started to move slightly and of course was confused by being startled from her deep sleep.  I was relieved and angry at the same time.  Belle was fine, somewhat confused to find me standing in her room.  She had just been asleep.  Behind the door, all the smaller furniture from her room, a chest, a rocking chair and a two drawer bedside dresser (with the draws full) were piled together, with the top lip of the back of the chair wedged beneath the door knob, just like in the movies.  I cleared all the furniture from behind the door, in time for Scott to call, asking me if everything was alright.  I told him she was fine and that I would explain the circumstances later.  I stayed with her for a while, helping her in the restroom and assisting with her lunch.

Later that evening Scott tried to question her about the pile of furniture that had been blocking to door.  Was she afraid of someone?  Did she recall why she had blocked herself in?  If course, she could not recall the reason or the event but stated she did not feel afraid.  She was certain it was someone else that had moved the furniture.

Susan confirmed Belle had been awake when Susan had left for work that morning, so all the actions completed to move furniture to block the door had occurred after that time.   We took steps to remove some of the more easily movable items from the room in an attempt to prevent future events of this nature.  We also discussed placing a camera in her room viewable by the website, just like the one in the living room, but decided that might be a step to far for Belle’s personal privacy.

Chapter Nineteen-Alzheimers Story Wednesday, Nov 25 2009 

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

Chapter Nineteen

When Belle’s problems first began to appear, Scott could be very upset by any manner of joke that was made or any laughter that occurred at the expense of his mother. Since so much of what happens can be funny, we tended to disagree on this topic.  He was very protective and saw jokes and laughter at things she did or said as a sign of disrespect Belle.  I saw the laughter as a way to release tension and stress, which we had in abundance.  If we did not release some of the stress, we would crumble into tiny pieces and blow away. The laughter was not a personal affront and I knew her actions were not things she could control.  We would display a united front in her presence and then argue about the issue outside of her earshot.  I recall telling Scott my face hurt from fake smiling after one extended visit with Belle on one of her bad days.

As time passed and more issues appeared, laughter and jokes were the only thing that seemed to keep us breathing.  If the matter was minor and Belle’s sprits high, we could joke in her presence and she would join in the laughter whether she understood it or not.  As I’ve stated earlier, she was rarely belligerent, as many Alzheimer’s suffers are.   We were careful however, to consider her feelings and mood, and tried to not display the dismay we often felt.  She was good at reading people, especially in the beginning, and knew if something was wrong, especially with Scott.   We had continued pinching each other to ‘feel my pain’ although we rarely spoke the words.  It was understood that something had happened that caused frustration and a pinch was the signal all would be okay.   We also incorporated some of her comments and regular sayings into our conversation.  We were often ‘just crazy’, had ‘tired eyes’, already had our lipstick on or suffered from a malady of blue eyebrows.

My co-workers were familiar with the situation, mainly due to the many times I had an emergency run when Scott couldn’t reach her by phone, and I told some of them the various stories or situations we were dealing with.  We also frequently spoke with Scott’s siblings and other relatives that would call our house and ask for an update on how Belle was doing after having spoken with her on the phone.  Talking about it seemed to help relieve some of the stress. We also attended group couples counseling with four other couples.  Although we were the only couple in the midst of caring for a disabled parent, we all needed ‘couples’ assistance in one form or other.  We attended this group for about a year. We learned better listening skills, along with confirming that, although this situation was difficult, we were committed to each other.

It is unfortunate to say, but in the house next door, Susan and her husband were not coping with the stress of the situation and did not seek outside assistance as we did.  Belle needed more and more assistance, and Susan, when she agreed to move in had really not realized what exactly assisting Belle would entail as Belle declined.  Scott and Susan disagreed on certain aspects of Belle’s needs, and this discord, along with the outside opinions of siblings and relatives, began to erode their relationship.

Chapter Eighteen-Alzheimers Story Wednesday, Nov 25 2009 

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.

Chapter Seventeen-Alzheimers Story Saturday, Nov 21 2009 

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

Chapter Seventeen

Believe it or not, there were those Belle came into contact with that did not believe Belle had any issue at all or if she did have an issue, it wasn’t as bad as we stated.  Sometimes it was the look on the face of a waiter, or the way the receptionist at the ophthalmologist’s office directed her questions, that clearly displayed that the individual saw no reason why the neatly dressed, white haired lady with us needed us to answer for her.     One of the widowed ladies from her Sunday school class made it quite clear to us that Belle was just fine and the problem was us.  Belle was such a good pretender that she could fake it with us as well and it would only be later, after we compared what she had said to both of us separately, did we realize we’d been taken in by the façade she maintained.  Her answers to questions were often quick and confident and if we did not delve into the subject further, completely believable.  Additionally, two other factors assisted Belle with her ability to hide her lack of recall from others.  The first factor is that Belle was very good at asking or answering questions vaguely and often the listener filled in the blanks in the conversation or made assumptions, later thinking she had said what they thought they heard.  Secondly, I’ve found that many people ask questions without really wanting to know the answer or they assume they know the answer.   If they really don’t want to know the answer, they aren’t listening to the response, and if they think they know the answer, they recall what they thought the answer was versus want was actually answered.  All three scenarios can be attributed to people not really listening.

I thought her ability to ‘fake it’ was excellent and would watch as she smoothly pulled off her vagueness with others.  When we would eat out, Belle would thoughtfully study the menu and then ask me what I was planning on ordering.   When it came time for her to order, she would say “I’ll have what she is having” and gesture to me.  This trick worked for while, even though I am one of those, take this off, substitute that and don’t let the food touch, kind of person.  The trick began to fail when she would make an innocent mistake or two, as one time she stated she would have what I was having before I ordered.  As time passed, we began to realize she did not understand or could not read the menu.  So, once this was clear to us, when eating out, we would order for her, knowing what she liked and that she was ever conscious of her weight.  I recall getting more than one strange look from a waiter when they would ask Belle if she was ready to order and Scott or I would answer for her.

I recall one circumstance especially that seemed to explain to me why others thought she was just fine.  A close family friend dropped by to visit one evening.  We all chatted for awhile and the conversation jumped from here to there.  As I walked with him out to his car after his visit, he stated he was glad to see how well she was doing, that she had known who he was instantly and even asked about his wife, who had been having some health difficulties.  He drove away happy and sure that Belle was still fine.  In reality, nothing could have been further from the truth.  When he had arrived that evening, I had glanced outside and had recognized the visitor.  Belle had answered the door, beamed a bright smile and said “well hi!” with great enthusiasm.  During the course of his visit, she told him she hadn’t seen him in while and asked how his family was.  He rattled on and she listened raptly, laughing here and there.  Later, after he left and I returned to the house, she asked me who I had been speaking to in the yard.   Not only did she not know who he was, she did not recall the visit that had just taken place.  Because this sort of thing had happened before, I always listened for specifics in her conversation, partly to see if she would recall a person or event without putting her under the spot light by asking her.  In this case, during her conversation with this visitor, none of her questions were specific to him and neither his name nor his wife’s name had been spoken by Belle.   She had greeted him with good cheer and “well hi!” so he assumed she knew him.  Because he had not seen her ‘in awhile’, which was true, she hadn’t, he assumed she recalled their last meeting and it had indeed ‘been awhile’.  Because she asked about his ‘family’ with concern, he assumed she was asking about his wife’s recent health difficulties.  He assumed, based on her facial expressions and voice tone, that she was fine, when in reality, she had not recalled him at all that day.  This friend even reported to other family members how well she had been doing.  As I’ve stated earlier, Belle was almost always in good cheer, and this fact combined with the fact that everyone that knew her wanted her to be okay went a long way to making them believe she was doing “just fine”.

The Sunday school widow friend mentioned earlier, who picked Belle up for Sunday school each Sunday and had let us know in no uncertain terms that Belle did not have any recall or function issues, finally realized that Belle was not ‘just fine’ when Belle related a story about a recent trip she had been on to Wyoming, when in fact the friend knew Belle had not been on a trip.  Belle’s story was long and rich with details.  The friend had even asked Belle questions for clarification of time frames and circumstances to make sure she had not misunderstood what Belle was telling her.  As the friend later related it to Scott, she was astonished and shocked to realize there was indeed a problem.  As time progressed, each person in Belle’s life could relate a story that confirmed for them or created the realization that Belle was declining in her recall and other abilities.

« Previous PageNext Page »

%d bloggers like this: