Santa and the 2 year old Thursday, Dec 17 2009 

I had high hopes that we’d get his picture with Santa this year, but alas, it was a no go.  My 2 year old grandson ( I call him Little Man) watched as the other kids sat on Santa’s lap and flashes of the camera went off.  After a cookie or two, we finally worked our way close enough to Santa’s bench that I thought I could coax him, but then he turned into water with no bucket and slid to the floor.  At least he didn’t cry.  He wanted to, but he didn’t.

But don’t despair, dear reader, we have a Santa picture this year.  Santa, Granny and Little Man are all in the picture, with Little Man on Granny’s lap.  I have one almost like it for his father, except in that picture it is easy to see that the child has been crying and I am much, much younger.  

Oh well. Maybe next year.

Chapter Twenty Six- Alzheimers Story Thursday, Dec 17 2009 

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

Chapter Twenty Six

With their sudden departure, Susan and her husband were not a part of Belle’s or our lives and the ongoing disappointment Scott felt toward his sister remained intact. We discussed this situation often, as Scott tried to adjust to the idea that his sister, whom he had always be close to, was no longer a part of his life. Along with other disappointments that year, we had to cancel our vacation plans for that summer, as we had no one that could stay with Belle. But we adjusted. Scott and I had, throughout our married life, tended to do routine things, such as grocery shopping, together. Now we altered our schedules so that one of us was available to be with Belle when she was not at day care. We included her in routine activities when it was feasible to do so, but often, we chose the route that caused one of us to run the errand while the other stayed with Belle.

After 6 months of no interaction, Susan contacted Scott and offered to keep Belle at her house overnight on a Friday. After much discussion and tension, Scott let Belle go visit. For the first time in months, Scott and I had an evening to ourselves. Deacon was in New Mexico on a road trip with friends. Cooper was in Colorado on a ‘racing’ trip he won. That night, for a little while, it was just Scott and I. Believe it or not, we acted like it was the first time we’d sent a child to summer camp. Scott worried about how Belle was doing, and I was not sure it was a good idea to remind me what I was missing by caring for Belle in our home. It was hard to appreciate the break in responsibility and not feel somewhat burdened by the whole situation. But, with this small gesture, Susan reentered our lives in a limited way.

Belle’s bladder control issues worsened and medication was prescribed, which in the beginning helped. We placed her on a schedule each evening, knowing that we needed to assist her in the restroom immediately upon arriving home and then remind her to use the restroom at regular intervals, in an attempt to prevent accidents. But accidents still occurred and we did not always know when they occurred. Her reaction to each accident was strange. Sometimes she would remove her protective underwear and not replace it with a clean pair, leaving no protection at all. The soiled item would be hidden only to be found at a later date in a undesired manner. Sometimes, when she had an accident, she would rip the ‘padding’ from inside the underwear and flush it down the toilet, put it in the tub, or stuff it in her pockets. She made up stories if asked if she was wearing her protection. Once, when I asked, Belle even went so far as to check herself (by placing her hand in her pants) and tell me she was wearing her underwear, when in fact she was not. The look on her face reminded me of when the boys were small. They knew the answer I wanted to hear and would say it, but the look on their face told me that what they said was not the truth and they knew it. On more than one occasion, we found out the hard way that she had removed her protective underwear and was not wearing another pair. So we were on constant ‘potty’ patrol, checking to make sure she was protected so as not to risk a visible accident, especially if we were in public. We packed and carried a special supply bag with us in case of emergency which included extra undergarments, wet wipes and a change of pants. Discussion with her determined that she knew when she was ‘wet’ and that she should not be, but she wasn’t able to prevent the accident or able to think through the solution which was changing into a new pair of underwear. It was hard to balance the dignity Belle deserved with her level of understanding when dealing a personal situation regarding hygiene and underwear and I am not sure that we were completely successful.

Other odd behaviors included Belle believing Scott, rather than her son, was her boyfriend or husband. It was not uncommon for her to bestow on him overly affectionate attention. She would hold his hand, pet his arm, rest her head on his shoulder, and speak in a cooing, soft tone. Although Scott normally handled the situation easily, at times this could cause him some discomfort, depending on where they were when she acted upon her belief. At times he was embarrassed; however, he was always careful not to hurt her feelings while dissuading her. I always found it amusing that while Belle believed Scott to be her husband she did not believe Scott was Jim.

Although we only had rare occasions of aggressive or belligerent behavior from Belle, which can be common with some Alzheimer’s sufferers, she began to have more bouts of anger or aggression as her confusion grew. Unfortunately, most these bouts were aimed at me whenever she thought I was coming between her and her ‘man’. We became aware that her anger or aggression was more likely to occur if she witnessed us hugging, kissing or engaging in private conversation. We began curtailing any outward sign of affection in her presence. Additionally, as time passed I could no longer help with dressing or bathing her. If I was tried to perform any type of assistance she would become uncooperative and glare angrily at me. Her glare would follow me around the room if I moved, and I found it interesting that she was able to complete this task without ‘forgetting’ she was mad at me. Anger seemed to sustain her ability to recall she was angry. During the worse of her bouts, she would kick or hit me when I tried to assist. When she indulged in this activity, she would lash out and then try to hide her action from Scott, in much the same way a child might hide their actions if they knew what they had just done was wrong. So, to limit the problem as much as possible, I began to assist with more of the background activity that supported whatever needed to be accomplished, such as getting her dressed, while Scott would complete the activity, such as actually dress her. Strangely, however, I was still able to pick her up from day care with a promise to take her to Scott and a bribe of a chocolate shake.

From time to time, her aggressive behavior or argumentativeness was aimed at Scott. Even though this was not unexpected, it is still difficult for Scott to accept. When these situations arose, she would argue with him about the need to do whatever he was trying to assist her with and flash her angry eyes like a child. One instance occurred on a Sunday morning when Scott was attempting to get her ready for Sunday school. As had been arranged years before, her friend from her class was still coming by and taking her to Sunday school each week. That morning, Belle was so argumentative and uncooperative, that Scott finally gave up attempting to get her dressed. This one of the few occasions that Scott became frustrated with her. Her angry words and actions were not new to me. I was accustomed to her lack of corporation. But this activity aimed at Scott was something new. He walked away, frustrated with her behavior and surprised that she would not cooperate with him. She allowed me to help her get back into bed, and she spent most of that day sleeping. Her trip to Sunday school that morning was cancelled.

It was around this time frame that a casual comment by Belle’s Sunday school friend caused us to inquire about her behavior outside our presence. The friend was in the process of dropping Belle off after another trip to Sunday school when she stated that Belle ‘sure liked her music’. Scott and I thought this was a strange comment and Scott asked her what she meant. The friend explained that during the music portion of the service Belle often clapped her hands and stomped her feet. I recall the look of shock on Scott’s’ face when he heard this explanation, as this church was not a stomp your feet clap you hands kind of place and Belle would never have considered such actions prior to her illness. Her carefully crafted façade would not have allowed it. Although Belle had been clapping her hands and dancing around at home when music played, but it not occurred to us she might be behaving in this manner at church during a service. The friend went on to tell us that when Belle had first starting this activity it was quiet and controlled, but the recently, she had expanded her movements. Although the friend did not say specify she was embarrassed by Belle’s actions, I felt she had brought the subject up for just that reason. Not long after this discussion, the friend had some health issues that kept her from going to church for an extended period of time. When the friend resumed attendance, we felt it was a good time for Belle to stop imposing on her friend’s good will each Sunday, and Belle stopped going to Sunday school.

Items went missing around the house, only to turn up hours, weeks or months later. We were careful not to leave anything small in view, as it may well disappear or end up in Belle’s pocket. The worst instance of disappearing items involved my keys. I had long ago learned not to leave my purse or any other personals item in view. On this occasion, I placed my purse and keys on a piece of furniture by the front door because my hands were full. Belle and I had stopped at the grocery store on the way home and I was carrying in groceries. I swear that I did not leave my purse in that location for more than a minute or two before moving my purse into my bedroom. I did not recall until later that my keys had not been in my purse, but placed next to it and when I moved my purse my keys were not lying where I had left them. Later that evening, when I attempted to locate my keys to retrieve something else from my car, I could not locate them. My keys were not in my purse or anywhere else I had been during the evening. When Scott arrived home we spent most of the evening trying to find my keys which contained car, home and security keys belonging to my employer. We had no luck. In fact my keys remained in limbo for over 6 months and where finally found in the most unlikely of locations. While picking out jewelry for Belle to wear with an outfit to Sunday school, I found my keys hanging on the carousel of necklaces in Belle’s jewelry box. I laughed until I cried. How she could have spirited them away and hid them so carefully, I will never know.

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.