My Random Life

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

Chapter Twenty Nine

The facility we selected was expensive and catered to persons with Alzheimer’s/dementia.  It was built for that purpose and was basically a house with 16 bedrooms.  It had a nice, large oak filled back yard that afforded the mobile residents outdoor time if desired. The front door of the facility was locked with a security entry system to ensure residents couldn’t leave without permission. The facility boasted a nice living space and separate dining space that allowed for group activities and family visits. Belle would have her own room and bathroom with a commode and sink.  Baths were taken in a special area with a special tub with a door so that residents did not have to step over the side of a tub into a shower.  (We had worried about this situation at home with Belle.) The facility had a hairdresser that came in once a week and used the small hair salon to keep the residents looking their best. All in all, it seemed like a perfect fit. The individuals in residence were at all different levels of assistance, from those requiring a hired helper to those like Belle, that were mobile and maintained a small level of self ability.   After the doctors and facility’s assessment of Belle were completed, all involved agreed her needs would be met. We finalized our decision with a deposit which confirmed we would be placing Belle at the facility and started the expected six month or more wait.  The day care would close down before the estimated 6 month wait was over and we worried about how we would manage Belle during the gap. We discussed the possibility of each of us taking shortened work weeks and tag team staying home.  We both had some leave time built up and if our employers would cooperate, we could care for her at home without too much of a financial impact on us. I checked on how my work laptop could connect from home, hoping I could work some from home while still caring for Belle.  However, in mid May 2003, just as we finalized the decision, the facility notified us of an opening beginning in June.  We agreed Belle would fill that open slot. We called Scott’s siblings and explained the decision. 

When the time for her move was close, I channeled my emotional energy into all the needed activities. I took two days off from work and began preparing for the move.  I made copies of favorite family pictures from her bedroom with us, framed the copies and placed name labels on the glass over the picture.  I thought the labels might help her recall her loved ones and also allow caregivers to engage in conversation with her regarding the people in the pictures.  I thought if she mentioned a family member by name, the caregiver could point out the loved one to Belle for reference. I made sure that each immediate family member was featured in a picture.  I coordinated preparation for the rest of her personal items and furniture she would be taking with her, including the memory books of family pictures we used to assist her with conversation and recall.  I marked all her clothes, sheets and other items.   I coordinated with the facility to get her room painted a light cheery pale yellow.   Scott coordinated her medication transfer, as the facility required bubble packs versus loose mediations in a bottle.

On June 12^th, the day before Belle’s scheduled arrival, Scott and I delivered her belongings to her new room.   I set up her room by arranging the furniture, hanging her pictures and placing her clothes in her closet.  Our plan was to have the room ‘hers’, familiar and comfortable, before she arrived.  We wanted her to feel settled and at home to ease her transition.

On June 13^th, Scott and I accompanied her to her new home and stayed with her while she inspected her new surroundings.   The attention to detail and care taken to make sure she was comfortable in her new surroundings seemed to work and as she explored her new room, she moved from picture to picture, reading the names out loud or laughing.    She immediately began interacting with other residents and after watching her for awhile, we decided it was time for us to leave.  Susan had originally planned to accompany us when we brought Belle to her new home, but Susan’s plans changed, and she promised to visit her that evening and let us know how things were progressing. So, with some reluctance, we started our goodbyes.  I watched Scott closely as I was sure he would crack under the stain and the guilt he felt that we could no longer keep her at home.  He kissed her and told her we’d be back later to visit and that Susan would be by to visit later.  He helped her settle in to a seat in the dining room to eat her first meal at her new home. As we left the facility that day, I watched as Scott cried for the first time in many years.   

We were concerned that the change in living arrangements would negatively impact Belle’s abilities.  We were concerned that she was past the ability to adjust to new surroundings. The staff at the facility told us that sometimes families wait too long to place a loved on in a facility of this nature out of guilt and by the time the person comes to live at the facility the transition is not smooth.   They are in new surroundings that are not familiar and they cannot recall why.  But Belle adapted very well to her new home.  We were thrilled she still had enough ability to adjust.  Sometimes when we came to visit, she acted as if we are interrupting her business.  We purchased wind chimes for the back yard and large flower pots with blooming flowers which Scott and Belle tended on our visits.  We ate meals with her in the dining room, watched movies with her in the living room or sat with her in the backyard swing.  Belle seemed to believe the facility was her house and would turn off the lights others turned on.  We laughed on more than one occasion when she complained to us that these other people in her house were wasting electricity or would wonder out loud who all these people at her house were. 

We began a routine of at least one weekday and one weekend visit, unless something dictated otherwise.  We frequently took Belle for drives to look at fall leaves or Christmas lights. Sometimes we drove out to her old country home or by other places from her past.  Sometimes we drove out to our new house, still under construction, and drove through what would be our new neighborhood, pointing out flowers, trees and house designs we thought she would like. Many times, if a house was pointed out, she would comment that Jim had built it, when of course he had not. She continued to like chocolate shakes, so sometimes we purchased the treat and just drove around while she drank it. Susan also began to visit regularly, taking Belle out of the facility for manicures and snacks.

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

Chapter Twenty Eight

In late 2002, Scott and I decided that the two story structure of our home was no longer conducive for Belle’s care. She was having more difficulty navigating the stairs, and the upstairs bathroom was too small to be able to assist her in the shower without being a contortionist. We needed a one story home with a larger bathroom. We discussed looking for another home in our area and decided we were tired of living in the city.  We bought a few acres about 30 miles away outside of the city, in a small town within commuting distance.  Using the information gathered during all of our years of touring model homes and homes under construction, we began designing a new home to be built with our wants and Belle’s needs in mind.  The project gave us something to focus on besides Belle.  We spent at least one weekend day, with Belle hanging out with us, clearing the heavily wooded lot, roughing it, and in general having a nice day.  We committed to the project and began to make plans accordingly.  We again had something fun to work on together. 

Belle began to have recurring episodes of what appeared to be fainting.   The first one occurred in November 2002 when Belle was visiting with Chuck and his family the day after Thanksgiving.  Belle was suddenly weak and more confused than normal.   Then she slept for an extended period of time and seemed to be her normal self the following day.  Scott spoke with her doctor, and was told that this was not uncommon and not to worry.   The doctor mentioned that we may want to consider placing a DNR in Belle’s file.  Between November and March Belle had one or two small episodes, and then would bounce back.  In early March of 2003 the worse of these spells to this point occurred while Belle taking a shower with the assistance of Scott.  She went slack and then passed out. Scott caught her before she hit anything, injuring his back catching her dead weight and yelled for my assistance. Between the both of us, we were able to remove her from the shower/tub enclosure and although the upstairs bathroom was very small, we were able to maneuver in the tight space and lay her on the floor of the bathroom.  Unlike the previous spells that involved passing out and then confusion, this time she experienced loss of bowel control.  Once we placed her safely on the floor, we were able to clean her up, dry her off, and attempt to ascertain her condition.  She regained consciousness quickly but was highly confused and sleepy. We managed to get her into bed and she slept for hours.  This spell was more severe than some of her previous spells and we once again had her checked out by her doctor.   The doctor stated her spell had appeared to be a TIA (mini stroke), which is a common symptom of Alzheimer’s due to the brittleness of the blood veins.  He also spoke to us again about placing a DNR on file.

Although she appeared to be fully recovered physically from the March episode, we noted an increase in her anger levels.  She began to lash at both of us more often, and seemed to, in general be more moody and less cooperative.  Her hostility at me was obviously increased. She became uncooperative and belligerent without any reason.  In the past, she would normally follow instruction provided by Scott, but now instances of balking at his instructions and refusing to cooperate increased.  Without her partial cooperation, my ability to assist Scott with her personal care markedly diminished causing the majority of the physical care to be provided by Scott, as even with her resistance, she still would cooperate more easily with him than me.  I assumed even more of the background support functions and Scott assumed full lead with Belle.  I began to see obvious signs of stress in Scott.  He was obviously physically, emotionally and mentally fatigued. 

After careful consideration, I suggested it might be time to start investigating other living options for Belle.     Our ability to care for her at home was becoming increasingly difficult, and at the same time, it appeared access to day care might be discontinued, which would make keeping her with us impossible. The adult day care Belle was attending each day as a paying customer was slated to lose its state funding with budget cuts the theme of the day.  When the funding for the day care facility was suggested as a place to cut back, I tried to fight the cut backs by writing letters to each legislator, explaining in detail the hardship the closure of the facility would cause for the families that used the facility.  I also explained that some of those using the facility were paying customers, even though the facility relied on state funding for its survival.  Most of my letters did not receive a response and the one that did was a form thank you letter. 

Scott struggled with the idea of Belle living elsewhere and not being under his watchful eye the majority of the time.  He seemed to think that it meant we had failed in some manner if Belle was placed in any type of facility care.  We discussed the situation repeatedly during the later part of March.  My position was that we had been frugal with her funds, investing them carefully, so that when the time came that she needed more care than we could give, we would have alternatives available to us and that she would have enough funds to be able to pay for her care as long as she needed care.  We had always known, in the recesses of our minds, that we would not always be able to provide Belle’s care ourselves at home, and I felt, it might to time to look into what alternatives were available to us.  Scott finally stated that he just couldn’t push himself to research this area, but if I thought it was best and time to complete the research, he would listen to whatever I learned.  I began performing research for what types of assistance was available and what it might cost.

Dementia suffers require a specific kind of care that is not often readily available at most facilities that offer elder care.  Many facilities cater to the loss of physical function or a combination of loss of physical and mental function but are not equipped to deal with dementia of an able bodied person.  I quickly determined though reading articles online, speaking with staff at her doctors office and speaking with several administrators from some of the local facilities, that Belle would require specialized surroundings catering to dementia patients that were still mobile and that she was past the assisted living stage of care normally offered.  Her assisted living stage had been occurring when she was living next door to us and with us.

I located several local facilities that touted providing appropriate assistance to patients with dementia issues.  We checked out references for each location and based on the information received, decided to visit three of the facilities.  Two of the facilities were general elder care, with Alzheimer’s wings, and one facility was strictly for the care of patients with Alzheimer’s.  We made appointments to visit each facility on different days, as Scott was sure three visits in one day would be overwhelming to his guilt level.   As we made these plans, we were also told that Belle’s day care program was definitely slated for budget cuts and would be closed down later that summer.   

With the closure of the day care program looming, we were in a time crunch for addressing Belle’s needs. She could not be alone during the day, and we couldn’t afford not to work and provide her with full time care ourselves.  We discussed trying full time help in our home, but that did not solve the evening issue that was impacting us.  Although Scott struggled (felt guilty) with the decision that Belle needed full time care outside our home, he agreed without the availability of day care, it was the correct choice.  We visited the three facilities I had identified as appropriate for Belle’s care and reviewed her financial position in depth.  Whichever facility was selected, the price tag would not be inexpensive.

Each visit was difficult, and although I had initially not been pleased with stretching the visits out over a longer period, it turns out to be better to do so, emotionally speaking.  Each facility offered what was needed.  And each facility was full of suffers like Belle at different levels of decline.  The time in between each visit allowed us some time to recoup, take a deep breathe, and discuss the pros and cons of the facility in a reasonable way, trying our best to not be emotional.

We decided that Belle’s needs would best be suited by the style and care given at the facility that strictly catered to Alzheimer’s suffers.  Additionally, it was practically across the street from my employer, and although quite a distance from our current home, it would be convenient to our home under construction. We contacted each of Scott’s siblings and discussed the situation in depth.  All agreed it was time for this change.  The normal waiting list was six months, and since the daycare would be closed before then, we were uncertain how we would manage until an opening became available.    We had Belle evaluated by her doctor.  The assessment staff of the facility met with Belle and performed their specialized assessment of her to determine her function level as they related to what assistance they offered.   With the decision made, some of the burden was lifted, but none of the guilt.

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

Chapter Twenty- Seven

As Belle declined, Scott and I disagreed more and more about how her lack of abilities were impacting us and in some cases what her abilities were.  I started to keep a journal of my complaints, because each time I tried to talk about my feelings with Scott, he would shut down emotionally. He was doing all he could do to keep the situation afloat, and he needed me to be self sufficient.  Reading back through some of my comments at the time, I can freshly recall the frustration and isolation I felt.

An entry from January 2003:

S and I both took time off during the holidays and managed to eek out a few hours together without his mom.  We are struggling not to kill our relationship because we are caring for her.  For some couples this would not be so difficult, as they never talk anyway, but S and I have the kind of relationship that includes a lot of talk, and we cannot do it with her around all the time.  And the added complication is when we do have time to talk, we almost always turn to talking about her and where things are.  We disagree on her abilities and how to handle things regarding her.  Last Saturday night we had a big blow up about her.  I think the main disagreement was that he insists on including her in every conversation and activity even when it is obvious that she is not able to participate in the activity or follow the conversation.  It taxes her to try when this happens, and she gets worse.  When she says something that is wrong [Jim just called and is coming to pick her up as an example] he never corrects her.  So she builds more conversation on the wrong information and we go into lala land.  My experience is that you can gently correct her, and it will refocus her to something else, that she might get right.  If you let her continue into lala land the tales get bigger and bigger until they are outright lies.  And I mean lies.  She makes up some whoppers and they go on and on.  She does not understand that we know what she is saying is not true.  And when I say lie, I do not mean things like “Jim said”, it’s more like “When I climbed Mount Everest”.  Stories S has heard all his life and that I’ve heard for 26 years are suddenly different now and she is always the shining star that saved the day.  I know it is part of the disease, but that doesn’t mean I should have to sit and listen to it forever, paying rapt attention.  We did that in the beginning, but there are just not enough hours in the day.  Once again I am not advocating cutting her off or being mean about it, but gently leading her away from a subject she cannot handle truthfully.  She can have a 20 minute conversation out loud that never says anything and we cannot figure out what the seed beneath the layers is.  In the past, when she would start talking about something, if you listened closely, you could figure out what the common thread was that connects the disjointed sentences.  Now, the thread is gone and the disjointed sentences do not seem to relate to anything and of course she cannot tell you what she means.

She is having more wetting accidents and then takes the protective underwear off and hides them.  Then proceeds to go around with nothing on to protect from another accident.  Or she rips the lining out of the underwear out and flushes it.  Or pulls them down and then wets.    At least three times a week she is wetting the bed through the underwear.  Sometimes she tries to make the bed to hide the wet linens.

She is paranoid, thinking that people she sees are threats to her, saying things like ‘that Mexican kid (meaning my 10 year old niece) is going to hit her in the head and steal her purse.’  Blocking off doors with furniture, hiding hammers under the bed.

A list of other things?  Palming car keys and other small objects and hiding them, wiping her nose on clean towels as she tries to fold them, wiping her nose on other peoples dinner napkins then folding it and putting it back next to the plate, answering the TV remote thinking it is the telephone, hiding food in her clothes, closet and dresser drawers, screw driver in the freezer, full water glasses in the cabinets or freezer, moving her food all around the plate scraping the fork on the plate like fingernails on the chalk board,  eating tarter sauce, or salad dressings by itself  or spreading it on her dinner roll, always insisting that her blouse collar be turned up like it is freezing outside when it is summer….it’s the little things that drive you nuts.  You haven’t lived until you open the freezer and a glass of cold water dumps down the front of you………

Scott and I struggled under the weight of the responsibility for Belle’s physical and financial well being.    It became more difficult to include her in activities with my family due to fear she would say something inappropriate to my sister in law and my nieces, based on their dark skin color and Belle’s paranoia.  It became difficult to leave Belle alone in a room for any length of time, for a variety of reasons.  It was difficult to find family to sit with her.  It was just us.

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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.

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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.

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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.

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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.

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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.

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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.

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

Chapter Sixteen

Not long after Belle’s return from Wyoming and our brief vacation from responsibility, a chance meeting at our community mail box changed our lives.  Our next door neighbor was planning to sell his country lumber store and retire.  He and his wife would be moving back to St. Paul.  He inquired if Scott knew anyone that would like to buy his house as he was planning on putting it on the market in a month or two.

Although he did not mention it to our neighbor, Scott immediately came home and asked me what I thought about Belle selling her house and buying the one next door to us.  It was slightly bigger and newer than her current home, but would be priced less.  She could improve her financial position and we could be less burdened with her care because we would be right next door.  We discussed this option between us for several weeks.   The situation had its pros and cons.

Pros were Belle would be close by and this would presumably be less of a burden on us.  She would benefit financially from the sale of her current home.  Scott had voiced some concerns about the level of attention Susan provided to Belle while living with Belle, as her methods and treatment did not reflect his views.  Susan and her husband liked to go out frequently with friends, leaving Belle alone at night more than he felt was appropriate for her level of function.  If Belle was next door, he felt this issue might be resolved and Belle would be properly attended.  Although we had purchased our home with the thought Belle would be living with us at some point in the future to ensure she received proper attention, we were not quite ready for that step.  Deacon still lived at home (a teenager in high school) and if Belle lived with us, they would be sharing the upstairs bathroom.  We had assumed that if Belle came to live with us, it would be after Deacon was no longer living at home.  So, next door meant she was close but we still had our space and she would still have hers.

Scott asked Belle, in a general way, what she thought about living next door to us.  She immediately said “let’s go” and then stated it would be nice to be close.  Scott mentioned to Susan the possibility of the house next door becoming available for Belle to purchase and for Susan and her husband to continue to live with Belle, helping her.  Susan agreed she could move as well and possibly use some of her own things and furniture in the new home.  She suggested she could maybe even become part owner in the home.   Scott and his sister had always had a good relationship, and that would, everyone seemed to agree, assist with any problems that might arise due to living next door to us.

So, after much discussion and debate, the possibility of giving up some privacy by living next door to relatives seemed like the only con.  We could deal with any difficulties that arose.  A plan to move forward was set into motion.  Scott approached our neighbor and told him about what we were thinking and attempting to accomplish for Belle’s sake.  The neighbor thought this a fine idea.  We set a time for an inside tour of the home to determine if the house would fit the bill for what we thought would be needed for Belle, Susan and her husband to combine their lives into one household.  At the current home, everything was Belle’s and Susan and her husband lived in a guest room. All their belongings were in storage. At this house, the plan was that possessions and space would be divided more evenly in an attempt to make everyone comfortable for the long haul.  After a review of the home by all parties, it was decided that it would work for our purposes and Scott relayed this information to our neighbor.  A verbal deal was cut for the purchase of the home.

Scott discussed the proposal with the three other siblings, to interesting reactions.  Chuck and Mike stated whatever Scott thought was the best thing to do, was okay with them as Scott was dealing with the majority of the responsibility and to quote Chuck,  Scott ‘had the power’.   Larry felt, in my impression, that he should have been consulted before the verbal deal was in place for the purchase of the new home.  He stated it was time for Belle’s current home to be sold and for Belle to be moved into assisted living. He was also not happy with the increased involvement of Susan, as Larry and Susan had had some issues in the past.  Scott agreed Belle needed more assistance than could be provided while she lived alone, but that this solution offered a way to invest Belle’s money with the emphasis on maintaining what funds she had as long as possible and that she would no longer be living alone.  Scott, while not always agreeing with how Susan assisted Belle, felt that Susan was certainly capable of providing the attention Belle needed. The disagreement between the brothers, while not heated, caused a rift between Scott and Larry.  Scott felt that he was present and dealing with Belle each day, so his insight into what was best for her was applicable and paramount.  He listened to the opinions of his siblings, but at the end of the day, the decision, by way of the power of attorney, was his to make.   Scott also seemed to feel that Larry was attempting to pull the big brother card, an issue which had rested dormant below the surface of their relationship for many years and sparked to life any time Larry told Scott what he was ‘supposed’ to do.   Due to the 14 year age difference in their ages, Larry had been an adult while Scott was still a child and Scott’s becoming an adult did not remove the tension which continued to leak into the relationship when Larry treated Scott as if he were still a child.

Scott pursued completion of the deal stuck with the neighbor.  The neighbor was outstanding.  He did not list his home with a realtor.  The home could be purchased directly, and the savings of the realtor fee could be passed on in the format of a reduced price for the home.  So, new home was purchased, and the old home placed on the market. The summer of 1999 was spent once again getting ready for a major move.

Since all of the ‘adults’ working toward this move were employed during the day and there was many possessions to pack, Deacon spent much of his summer days that year with Granny attempting to begin the packing up process.  We still encountered the issue of Belle being the ‘adult’ and Deacon the ‘child’ when it came to how Belle viewed the relationship between Deacon and Granny.  Although she no longer could use reason with any consistency, and Deacon was a smart, able young man, he struggled with issues, such as telling her what needed to be completed.

Since we were in the habit of not telling Belle about events in the future due to the worry and fretting this type of information caused, we struggled with when to tell her she would be moving in a month or two. In the end, when the packing of her belongings seemed to upset her, we had to tell her she was moving at some date in the future.  I am not certain which avenue was the best.  If not told, she worried and fretted about the changes around her.  If told, she worried about the move itself and being ready for it.  However, when alone during the day, once the idea she was moving to a new home penetrated her thoughts, Belle would pack things.  Some of the packing was appropriate and some was not.   One day a few weeks before the move, she packed all the food in the kitchen and refrigerator into boxes, one day it was the curtains, including the rods, off the windows, and one day all the beds had been stripped and the bedding packed.  All of these items were packed while still in use. Once, when arriving with dinner on a designated packing night, we found all the salt and pepper shakers along with the sugar were packed in a box with all the items from the medicine chest in the bathroom and duct taped closed with, what it seemed to me was a half of roll of duct tape. As the summer progressed, we enlisted the assistance of anyone who would help, including my mother, who, due to our constant moving when I was a child, is a very good packer.  During August 1999, Belle, Susan and Susan’s husband moved into the house next door to us, with Belle in the master bedroom and Susan and her husband taking over the remaining two bedrooms.  Scott immediately installed a gate between the two back yards.  We jokingly called this arrangement the Compound and likened ourselves to the Kennedy’s living arrangements on Martha’s Vineyard.

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