My Random Life

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

Chapter Fifteen

Belle needed more help than could be provided from a distance, although I have to admit, it did not feel like a distance.  Belle had become the premier focus of all of our activities.  Every action we took included consideration for how Belle was impacted.  Because she needed assistance with everything, we had to consider her when making any plans of our own.  In addition to not eating or eating improperly (cooking was out of the question), she was having difficulty with consistent medication intake, and was beginning to have episodes of lack of bladder control.  My visits, in addition to the emergency calls when she could not be reached, now extended to lunch visits to check on her to ensure she was eating.  If the evening was not spent at Belle’s, one of us stopped by on the way home to check on her.  We were in phone contact with her several times a day. We were coordinating and attending doctor, ophthalmologist and hair visits.  We were shopping for her or taking her shopping, grocery and other. Scott was handling payment of all her bills.  I monitored her checking and other deposit accounts. We were assisting her with her hygiene, as she had begun to not like to bathe.  We were concerned what would happen if she left the house during the day or attempted to drive, even through she hadn’t driven in some time. We had purchased a medical alert bracelet with her condition and our phone numbers listed on it.  This was fine most of the time, but she could work it off her wrist and would occasionally remove and hide it.  She was having difficulty using the phone, even with speed dial numbers programmed.

All of our activities to support Belle were time consuming and at times exhausting.  It was not possible to drop by for a few minutes and do a quick check.  Belle thought and acted slowly.   When checking on her, we had to allow her the time it took to absorb the question we asked, finish the task we were assisting her complete or on some days, just to interact.  We would tag team each other to get tasks completed.  Sometimes I would start the task with her and Scott would complete it.  Sometimes in the afternoon, Deacon would assist us. My mother would stop by for lunch from time to time, allowing Belle a chance for additional outside contact and us a chance to hear someone else’s view of her abilities.

To communicate in Belle’s presence without her understanding, we started speaking to each other with encrypted words or phrases or with prolonged eye contact, so we could speed along the situation without letting her know we were doing so.   A prolonged look from one of us usually meant the other should step up and take over.   We began to realize she could not live on her own much longer without some serious help. We briefly discussed assisted living for Belle, but her financial position did not offer the opportunity to place her in assisted living this soon into her illness. We also thought Belle would be resistant to the idea, as she still believed she was doing just fine ‘on her own’.  We began to discuss the possibility that we might have to move her in with us. I dreaded this possibility.

Finally, we thought we had found a solution.  In the fall of 1998, Susan did not renew her lease for our previous home, as her husband was working outside town and commuting home on weekends.  So, it was discussed that Susan might move in with Belle and be readily available to watch over and assist her.  Since Belle insisted she did not need assistance and did not want to burden anyone with that task, we stated she was helping Susan out financially, as her husband maintained a residence outside the city and this way they would only pay rent on one home versus two.  Belle liked the idea being able to help out. Susan would assist with the bill payment and actually be responsible for half of the home expenses.  Since she would be there to watch over and assist Belle, it seemed like a win win situation.  Belle would have someone with her at night and be able to more closely monitor medication intake and personal hygiene. So, a deal was stuck and the move in completed.  However, even with the insertion of Susan and her husband into the living arrangements, Scott and I remained intimately involved in Belle’s care.

We also had another issue approaching and arrangements needed to be completed.   Up to the point that Susan and her husband moved in, we could not travel for business or pleasure without ensuring one of Scott’s siblings was available to physically check on Belle in our absence.   Most of the time, she would travel with us so Scott wouldn’t have to worry that something would go wrong while he was away.  Even if we did manage to get away, Scott would keep his routine of calling her to remind her about her mediation intake.

But, in February of 1999, Susan, her husband, Scott and I were planning a trip to England and France together.  Belle could not be left alone for the 2 weeks we would be gone and Chuck and his family, while local, were not in a position to assist her at the level she required.  After much discussion, it was decided Belle might enjoy an extended stay with Larry and Emma in Wyoming.  Arrangements were made, and a plan set into action. Each year for Christmas, Chuck and his family went skiing in Colorado with his in-laws.  During December 1998, Belle accompanied them on their trip to Colorado.  Larry picked up Belle in Colorado and completed the final leg of the trip to his home.  Belle stayed with Larry and Emma at their home until spring break 1999.

We were accustomed to the various behaviors that Belle exhibited and throughout the changes in her behavior we had kept the siblings up to date.  Knowing Belle had memory and functioning disabilities is one thing and living with them for several months is another.  I do not recall many of the specifics of her stay with Larry and Emma (I was taking a mental vacation from responsibility I think), but I do recall Larry and Emma mentioning that they were surprised at the seemingly changing nature of her abilities, her propensity to pack to leave repeatedly, and that things tended to move around and disappear. They too began to withhold information regarding events and appointments from her because she would fret and become agitated if told too far in advance.  During her stay with Larry and Emma, they developed various methods of dealing with the issues as they arose but they were surprised at the level of her decline.

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

Chapter Fourteen

It is my understanding that because each person is different Alzheimer’s impacts each person different.  The overall progression of the disease may be the same, but each person fails to be the person they were before in a different way and time frame.  Up to this point in time, Belle’s symptoms and behavior changes were varied.  Each change by itself did not seem that significant.  All together, however, the changes were adding up.

Belle had always liked children and babies, although I do not recall, during the years before her illness, her paying much attention to the children of others unless they were misbehaving.  Misbehaving children and their parents would receive a withering look of disapproval.  Now, whenever we were out in public a baby or small child would pull her focus and she would point the child out.  This happened in numerous places, such as restaurants.  She would find it difficult to continue with the previous activity, such as eating, once a child or baby was noticed.  If she was watching the child, her focus on the child eliminated her ability to do anything else.  A baby close to us in a restaurant was so distracting for her, that we tended to seat Belle facing away from the people in the restaurant.  Without the distraction, she would be able to eat her meal.

Belle began to struggle with common words.  When her story or comment reached a place where she needed a word she could not think of, she would sometimes skip it and continue, making the conversation difficult to follow or she would replace it with a more lengthy description.  Some of these descriptions seemed to take more effort than the original word would have generated.  As an example, I vividly recall an instance when Scott, Belle and I were in the car together, and we passed a couple with a child in a stroller that drew Belle’s attention.  She pointed to them and asked us to ‘look at the baby on the’ then she hesitated, appeared to struggle for the word she wanted and finished her comment with ‘pathway of concrete’.  The couple and the child in the stroller were on the ‘sidewalk’.  This type of word substitution began to happen more frequently as her illness progressed.  Oftentimes, the word or substitute phrase she wanted never came to mind, even if we supplied some suggestions.

Belle continued her practice of reading billboards, signs, and bumper stickers that had first been so noticeable on the 1995 vacation trip.  But it was apparent that many times, although she could read the sign and pronounce the word or phrase correctly, she did not know what the word or phase meant.  It was as if all the energy exerted speaking the word out loud and removed the energy needed for comprehension.  When it was obvious she did not understand what she read, we began to read things out loud, except when we were in the car, hoping she would retain and comprehend.

A topic discussed before her illness that we had no doubt where she stood, if discussed now would find her opinion changed, often to the extreme opposite position.  She could voice opposite opinions in the same sentence.  Belle had definite opinions, conservative opinions that had not varied over time, until now.  Additionally, she began to voice opinions or make statements on issues that would have been completely out of character previously.  As an example, on a few occasions she stated angrily to me that the Catholics had killed Jim. I recall thinking “where is this coming from?”  Jim was in a Catholic owned/run hospital when he passed, but that was the only relationship between Jim and the Catholics that existed and of course, his death was not related to anything to do with the hospital.  Yet, not only did Belle state it, she appeared to really believe it.

Belle was raised during a time and location when voicing prejudice against others was not uncommon, but in all my years of contact with her, I had never heard her say anything derogatory against Catholics, Jews, Hispanics or African Americans.   During this period of her illness, it was possible she could state something inappropriate and/or offensive to others present.   If a waiter or busboy in a restaurant was a minority, she would watch him closely, as if he was going to do something bad in front of her.  She might even go so far as to point or whisper that we needed to watch him. When Scott and I spoke about this issue, we finally settled on the idea that the façade Belle had built for herself to become the sophisticated person she had been so driven to become was being broken down by Alzheimer’s.  Due to her upbringing, I feel she may have felt some of the things she said about others were true, but the worldly person she wanted to be would never voice these feelings, because it would be inappropriate to do so in public.  The disease removed her ability to distinguish appropriate behavior from inappropriate behavior and thus we heard her say things that were completely out of character and often inappropriate.

Belle also began to display paranoid tendencies.  We discovered she was blocking her bedroom door at night, as well has hiding hammers or other hand tools under the bed.  On one occasion, we had called her several times and had not gotten an answer.  So we dropped in to check on her.  She did not answer the front door.  We entered the house and a quick search revealed she must be in her room.  The door was closed.  When we knocked and tried to open her bedroom door, it would not budge.  We could hear her snoring.  After repeated calls of her name and calling her phone number, letting it ring, we finally woke her up and once up, she had to move a small dresser from in front of the door, along with some fully loaded suitcases used for clothes storage.  Inspection of her room caused us to realize she was sleeping with a hammer under the edge of her bed.  Scott questioned her.  Was she afraid to be alone?  Why was she blocking her door?  Although she stated she was not afraid, and had no recollection of blocking the door, we found the door blocked numerous times after that event.  The hammer was occasionally other tool, but a tool of some sort was always in the area for, we assumed, protection at night.

The medication alarm was no longer working to remind Belle to take her medication.  In addition to his morning reminder calls, where he would listen to her take her pills, Scott worked with the doctor to rearrange her pills schedule to allow for the most important ones to be taken in the evening and would stop by on the way home.  Scott could review her morning dosage to ensure it had been taken and watch her take the evening doses.   As time passed, she would, on occasion hide the pills or pretend to take them by placing them under her tongue and then showing us her ‘empty’ mouth.

Belle was no longer able to distinguish the appropriate treatment of items.  As an example, an old family photograph that she cherished and protected for years would now be written on in ink, defacing the photo.  And in some cases the information written on the photo would be incorrect.  She used packing tape or duct tape to repair delicate items that the tape damaged rather than fixed. Another example of this issue pertains to a nice solid wood entertainment center that Belle had borrowed from us when she moved into her city home.  She drove screws into its surface to hold notes and pictures in place, defacing and permanently damaging the finish on the piece.  These types of activities, once again, were completely out of character for Belle.  Before her illness she would never deliberately defaced the property of others, or damaged a treasured family photo.

Belle began to move and hide things.   Objects in the house were in constant movement and sometimes they would disappear from view, only to reappear again later.  Or we might find a jar of mustard in the china cabinet or the salt shaker in the medicine cabinet.  Most of the time, the objects on the move were no big deal and we became accustomed to things that had always had a proper place now traveling about the house.  In one instance her diamond ring went missing, and we searched for it for days.  After an exhaustive search, we finally gave up, reconciling ourselves to the fact that we might never find it.  Then, as suddenly as it had disappeared, it reappeared, although Belle could not recall that is was missing or where she had found it.  We eventually had a ‘fake’ of her ring made for her to wear.  The original was placed in safe keeping.

The items listed above are a sampling, not an inclusive or exhaustive list, of how Belle’s abilities were deteriorating.  We continued to deny to ourselves how bad the situation had become.   We wanted to abide by her wishes that she live on her own and did everything in our power to allow this to happen or at least create the illusion it was happening.  The changes in her personality were much harder to accept than the decline in her abilities. Even now, writing these items for this document, I am surprised at the excuses we made for these personality changes, events and circumstances of Belle’s disability.  Denial of the depth of the problem caused us to allow her on live on her ‘own’ for too long.

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

Chapter Thirteen

How does one treat an adult that is regressing?  There are no good answers.  We wanted to allow Belle to do what she could as long as she could do it.  When is it appropriate to interfere and not allow an adult do something they think they can do?  And how much should we give up to let this occur?  This balancing act caused us much discomfort and in some cases, disagreement.  The systems we developed to allow her to continue to live on her own were negatively impacting our daily lives. 

When a house behind Belle’s became available for sale we seriously discussed selling our home and buying it.  The home would have placed us in a financial tight space, and was smaller than the home we occupied, but was so close to Belle that living there might relieve some of the other pressures we were experiencing. After much deliberation, we decided the home did not meet our needs.  But in the process of reviewing the situation and how we might allow Belle to keep living in her home with our assistance, we began understand that it was a matter of time before it was not realistic to believe she could stay on her own as her abilities declined.  We began to explore and consider other possibilities.

In late 1997, we moved from our home of 14 years.  Our new home was about the same distance from Belle, but larger than our previous home.  Deacon was a teenager in high school and Cooper was moving out on his own.  We bought the home with the idea that at some time in the future that, after Deacon left for college, Belle might be living with us.  The rooms were large enough to accommodate Belle upstairs, with a bedroom and possible sitting room for company or visitors.

Although Belle would not be making this move with us right now, our move had unintended impact for her and provided a surprise for us.  Soon after we moved, Scott decided we needed a storage building in our backyard and solicited his brother Chuck to help him build it.  They started the project on a weekday and on a morning break called Belle.  They invited her to keep them company while they worked.  Belle, being a builder’s wife, was used to being the gofer projects, and I suspect, that when she agreed to drive over, she was looking forward to being useful to them in this capacity.  She told them she’d be right over.

The drive, even with traffic, should not have taken more than 15 minutes.  Even allowing time for her to get dressed, she should have arrived within a short time frame.  When an hour passed and Belle had not arrived, Scott and Chuck began to be concerned.  When the time elapsed into an hour and a half, Scott called her house.  There was no answer.   Over the next half hour, he called several times, again with no answer.   He was in the process of getting ready to drive around and track her potential route between her home and ours to find her when she finally pulled up to the curb in front our house.

Although physically safe, she was emotionally upset. Belle had been driving to our previous home for many years without assistance.   This time, she had started off driving to our new home and had gotten lost. She confused one major road with another and had driven well outside the city.  When she finally realized that the area she had driven to, which was miles south of her destination, did not look familiar, she started trying to back track her moves.  While unable to backtrack partially to the wrong turn that caused the problem, she was able to backtrack completely all the way back to her home.  She then set out again, shaken but determined.  This attempt was successful and she arrived at our house, late but safe. 

Belle had driven on her own to our home several times during the preceding months.  We had not given this activity any further thought.  However, after this incident, inspection of her glove box revealed written instructional directions to our home and several other destinations common for her.  We had not been aware Belle was using written instructions to drive to any type of common destination or at all for that matter.   This situation became frightening and reassuring.  Belle had been thorough enough to know she needed help in the form of instructions and had proactively created her own help aid.  Additionally, although she had been unable to backtrack and restart from a point other than her original starting point, she had been able to regroup, restart and arrive at her desired destination safely.

Although Scott had driven with her on more than one occasion observing her driving skills, his actions turned out to be insufficient to determine her abilities.  We speculated that when they were together, Scott must be assisting her without really realizing it.  If she hesitated, he filled in the information.   But now it seemed obvious she was relaying on written instructions for simple destinations.  Scott and I discussed this situation at length.  Should we insist she not drive?  Could we insist she not drive?  We did not want to deprive her of her ability to function on her own.  Taking away her right to drive might meet with resistance from her and place more of a burden on us.  She was driving herself to church and the grocery store often using her written instructions.  If we eliminated her driving, would we have to then take on the responsibility?  We debated this topic for some time and decided to let things ride a little longer.  In an ironic twist, Scott’s sister and husband moved into our previous home and Belle could continue to drive to visit her without written instructions.

Not too long after this incident, Scott injured his back incorrectly lifting some potting soil and for a month he underwent treatments to try to correct the problem.  This development meant I filled in for him more with Belle. Belle was very upset by his absence and his discomfort. She repeatedly asked how he was and if he was in pain.  After month of worsening symptoms, surgery became necessary.  Everything with the surgery went fine, but Belle remained impacted and unable to recall that he was okay once the surgery was completed, fretting and wringing her hands.  Scott came home from the hospital on a Saturday and could get around some on his own that same day.  Although I planned to stay home with him a day or two to assist, he was doing well enough that we decided I would go to work and just take a long lunch break to check on him.  I was in the middle of a project at work that others were depending on to complete their portions and although I had asked for and received the days off to stay with him, it would be best if I could go on in.  The surgery had been sudden and the days off would impact and delay the project deadline.  Then Scott suggested that it might be a good idea to let Belle help.  He did not need assistance getting up or moving around, although he would be only doing that to go the bathroom.  She could fetch items he needed if he choose not to move. She would then see for herself that he was fine.  He hoped she would feel reassured he was okay and that she would also feel like she was contributing to his recovery.  In other words, that she would feel useful.   So we settled on a plan and Belle was, as we thought she would be, glad to be useful. 

Scott called me shortly after noon on that Monday.  He was exhausted and in pain.  Belle was waking him up repeatedly to ask if he needed anything.  She could not follow through with a simple task request, like fetching a glass of water. She’d head off to get it, only to come back without anything and ask if he needed anything.  The pitcher of water I had prepared and left next to the bed for him was missing as was his pain medication and it was time for his next dose.  He did not have the energy to try to find the missing medication and Belle did not know where it was. She insisted on sitting with him on the bed and would hold his hand while watching him closely.   He asked me to come home and I did. 

After some serious searching, I found the water pitcher, still full of water, in the freezer, but Scott’s pain medication was nowhere to be found.  I searched the house, her purse, the freezer and any nook and cranny I could think of (inside and out) but did not locate it.  I called the doctors office and explained why we needed another pain prescription of the strong narcotic.  In the back of my mind I was sure they wouldn’t believe me, as the drug could have been easily sold on the street.  But I did not want Scott to go without, so I explained the situation in detail.  The office nurse was very doubtful and I ended up speaking with the doctor, again explaining the situation in detail.  I was grateful we had, during a previous appointment with his doctor, mentioned that Scott provided assistance to his mother due to her illness.   I was glad when he agreed to a limited refill, and explained what symptoms to look for in case she had actually taken the mediation.  I was doubtful she had, but checked her for the symptoms he listed.   Belle did not display any of the symptoms the doctor had mentioned.  I spent the afternoon reassuring Belle that Scott was okay, and now that I was home, she was free to get home to her projects.   I followed her home, to ensure she arrived there safely.  The next day, I went to work, and came home for an extended lunch break as had been our original plan and Scott’s recovery progressed.  I guessed the bottle of pain medication was hidden somewhere in the house and it would eventually turn up.  However, we have never located Scott’s lost medication.

For several years before and after his surgery, Scott traveled to Corpus Christi regularly for a day trip to visit an aging relative.  Belle occasionally accompanied him on this trip. The next time this trip was scheduled after his recovery, Scott decided to use Belle’s car for the trip and have her drive some of the distance so he could observe her.  The first leg of the trip went fine with Belle driving at highway speeds on a dividend highway.  When the first major city was encountered a change in highways was required.   As sometimes happens in big city traffic the overall speed of the traffic should slow down, but instead speeds up.  Belle seemed nervous, but was moving along with traffic when the exit for the appropriate highway began to approach.  The traffic and exit seemed to make Belle nervous and the more agitated she became the faster she drove.  The car exited the highway at a higher than recommended speed, and Belle did not seem to understand how dangerous the situation had become.  They continued through the traffic merge onto the appropriate highway and Scott guided her through verbal instruction to the next possible place to pull safely over.  He drove the rest of the trip.  His overview of the situation was that the roads were unfamiliar and although he was guiding her turns, she did not recall the instructions.  The instead of slowing down if she was unsure, her speed increased, which was an inappropriate reaction. 

Although inappropriate behavior can happen with many types of circumstance, losing the ability to make a judgment call and therefore acting inappropriately is an ability that is lost when other functionality is lost.  Belle was losing the ability to determine the appropriate speed of the car, the ability to determine junk mail from real mail, the ability to recall simple events (like what she for lunch), and the ability to appropriately judge how to protect important belongings.  So, in addition to losing her memory, she was losing the ability to reason.

We did not tell Belle she couldn’t drive anymore, although I believe if we had she would have handed over the keys.  We just arranged to make sure she had no reason to drive.  We took over shopping or taking her shopping, and drove her to all her appointments.  A friend from Sunday school dropped by each Sunday and picked her up for church. The idea that the car was still available to her, even though Scott had spirited away her keys without her noticing, and that she could hop in it and go to the store or church anytime she wished lasted for years, long after the car was sold.  She remembered driving and when asked what she had done that day, she might tell the person posing the questions that she’d being shopping or had driven somewhere, when in fact she had not.  The past she remembered often seemed like that day.

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

Chapter Twelve

My relationship with Belle throughout the years had many highs and lows.  Most of our issues stemmed from her relationship with Scott and our competition for his attention.  He placed her high on a pedestal and she enjoyed being there.  I was jealous of her and she was jealous of me.  As the years passed, we settled into an accepting, but not overly warm relationship. 

As we were injected more and more into her life, Belle and I spent more time together one on one than we ever had before.  In addition to being Scott’s back up for her various needs, including health and hair appointments, I also worked the closest to Belle’s home, so any emergency contact became my responsibility. As an example, if Scott called her during the day and she did not answer, I would receive a call from him and it was my responsibility to then drive over to her house to check on her.  I was lucky to have the type of job that allowed me to disappear for short periods of time during the work day.  After most of Scott’s calls, I would find her in the backyard, visiting a neighbor or asleep.  Additionally, as she became prone to spells when she became more confused than normal or became very upset for known or unknown reasons, due to my physical closeness, I was the one that sat and talked with her while she calmed down. 

In early 1997, Belle and I were involved in more than one occasion that found us sitting in her living room talking about her current situation and her past life.  One event of this nature I recall specifically started out with Belle being upset over a phone discussion with Susan that Belle had misunderstood.  Belle had called Scott and Scott had called me to step in and go to speak with her immediately after work, as he had a previous obligation he could not cancel.  By the time I was able to arrive, she couldn’t recall what her discussion with Susan had been about, and I do not know if I ever found out what the topic had been.  But we did begin to discuss Belle’s life and her current situation and feelings.

Belle stated several times that she knew something was wrong with her.  She really thought she might be going crazy.  She could not remember many things she knew she should know and she couldn’t finish a project as she had once done.  She could tell by the look on the faces of people she spoke with when she got something wrong, although she was rarely aware of what it might be that was wrong, which only increased her fear and anxiety.  She did not want to be embarrassed or embarrass anyone.  She felt that people were lying to her, telling her they had told her things she was sure they had not.  She did not know she repeated herself or that she made up stories, although she did admit to ‘guessing’ sometimes when asked a question she could not answer.  She did not know we maintained daily phone contact with her and had no idea how often one or both of us were at her house.   She claimed people must be coming into her house at night or when she was gone during the day and moving her things around, because things around the house were seldom where she left them.   She was afraid of what was happening to her and seemed to know she was helpless to stop it.  She was glad we were around to help, but did not want to be a burden.  We spoke about her life, and touched on her relationship with Jim, her mother, and her children.  She loved Scott deeply and had strived to raise him to be the caring type of man that he had become.  She was jealous of me because I had a husband like Scott; he was the type of man she had always wanted and had not married.  She was also jealous of me because I had her Scott.  And, in this modern world, I had a job and my own life in addition to my ‘good’ husband.  From her point of view, I had it all, a certain type of self earned worth she felt she had never had the opportunity to achieve.  And now, after all the things she had not been able to accomplish with her life, or have in her life, she was going crazy.

We spoke for some time and I did my best to reassure her all was okay.  I confirmed we knew she was not functioning as well as in the past and that she needed additional assistance.  I confirmed we were doing all we could to provide her the assistance she needed.   Based on her comments, I began to more fully understand why our relationship had been so rocky.  Taking me into her confidence regarding the desires and regrets of her life and what she felt I had accomplished with mine allowed me to let some of the old hard feelings dissolve.

When Scott arrived Belle had calmed down, forgetting about the original reason for my visit and all was fine.  I explained to Scott that Belle and I had a long talk and that all was well.  To my surprise, Belle was surprised by my comments to Scott, as she did not recall our conversation.   She felt better and was in good spirits, even if the long detailed conversation was lost to her.

As time passed and more conversations occurred between us that started out with her upset and ended with her being calm without remembering that she had been upset, I came to believe that although Belle would not recall the specifics of any of our conversations, or sometimes the conversation at all, our words of support and reassurance settled somewhere in her being, worked to help her calm down and provided the emotional support she needed.  Belle had difficulty recalling events but she always knew how she felt, even if expressing how she felt was becoming more difficult.  I believe she knew that we were there to help and protect her, whatever was on the horizon, and this allowed her reveal her concerns, fears and feelings regarding the direction her life was heading.

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

Chapter Eleven

One thing I have always been surprised at is how many people, including medical professionals, do not understand Alzheimer’s or how it impacts the sufferer or their families. (Just for the record, speaking louder doesn’t help the patient understand.)  It seems the general impression is that Alzheimer’s causes a person to lose their memory and that’s it.  The memory loss is defined as forgetting the names of things or people. While memory loss of this nature is a huge part of the picture, in reality, this disease is much meaner.  Over the years in dealing with Belle and the impact of her illness, I have come to describe the loss of memory and loss of abilities in a plain terms illustration.  I actually told Belle my theory once while she was still in her early stages and she agreed that it was very close to accurate for how her abilities were impacted. 

Picture a block of Swiss cheese sitting on a surface.  Now picture dropping little droplets of liquid onto the cheese from above.  Sometimes the liquid runs one way or the other; sometimes it drops through to a lower level through the holes.  Sometimes it pools in an unexpected place.  In this illustration, the abilities and memories of the person are the liquid and the cheese is the brain.  Sometimes the liquid drops on the top of the cheese and runs completely through it which means the person functions fine completely through the task or remembers an event correctly.  Sometimes the liquid misses the first level of the cheese and hits a lower level which means they cannot recall an important item or they may know step one and three of a task, but step two has been forgotten. Sometimes the liquid drops straight through the cheese without touching anything which means they’ve lost ability they once maintained or they recall the event but recall it incorrectly.  And all these drops happen on the same day, meaning that their abilities are at different levels at the same time.  The following day, the experiment is performed again and the liquid runs differently.  So on that next day, the abilities are different as well.  On that day, step 2 of the task forgotten previously is back or step one has joined it or is forgotten. 

As the disease progresses,   functionality and memory fluctuate. An Alzheimer’s patient may be able to perform a task one day and not the next, but regain the ability the day after that, at least temporarily.  Before my experience with Belle, I believed that once ability was lost, it was gone.  In later stages, that turned out to be true, but throughout the beginning and middle stages of this disease’s progression, I’ve determined that not to be the case.    Unfortunately, this fluctuation of memory and ability adds to the level of denial that exists in the patient and the caregivers.  I can recall numerous times discussing something Belle had forgotten one day and recalled the next, and using that as a sign that things were not getting worse or that the changes we were witnessing were temporary.  She was just having a bad day.

Although an Alzheimer’s patient may become child like in their reasoning or abilities or behave like a child, they are not a child.  A child’s normal progress is upward, improving, learning.  Once a child knows how to do a task or recall a fact, they normally retain it and build on it.  When an Alzheimer’s patient declines, their abilities reduce, but the descent is not even or fluid.  It is bumpy and uneven.  Additionally, the patient for us was Scott’s mother, a person of authority in his life.  Balancing the reduced abilities of the Alzheimer’s patient with the status of that person in one’s life is often difficult and frustrating.  The Alzheimer’s patient seldom understands how reduced their abilities have become and the caregiver must balance the physical needs of the patient against the emotional needs of the patient.  I believe the majority of the discord that occurs between a patient and a caregiver stems from this issue.  The patient doesn’t believe they need help or have significantly reduced abilities and may be insulted and/or angry that someone, anyone, much less their child, thinks there is a problem. The caregiver, oftentimes a child of the patient, tries to balance the physical needs and the feelings of the patient without, hopefully, insulting the patient.  The parent becomes the child and child becomes the parent as the disease invades their lives. The authority levels alter, but the patient rarely understands this change.  We were actually very lucky with Belle, as she, even with her abilities waning, generally maintained a good humor and spirit and was rarely angry at us or belligerent, with a few exceptions.

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

Chapter Ten

All the things that were going wrong combined with all the issues that were coming up had pointed to this diagnosis, but hearing it confirmed was hard.  I felt hopeless, embarrassed and angry.  We were already expending so much energy to protect and help her.  The words that were now coming out of the doctors’ mouth meant it would be getting worse and we would, because of her disability, be forced deal with and provide an increasing amount of daily assistance for her.  I spent time on the internet reading and rereading Alzheimer’s information and family stories.  I researched support groups.  I worried.

Over the years of our marriage Scott’s relationship with his mother had been a source of discord between us.  I felt that he always placed her first, that her wants and needs, real or imagined, always came first regardless if this placement was needed or warranted.  Scott felt obligated.  He had a duty as her son; she was his Mother.  He wouldn’t be here but for her.  During times of discord over this topic when we were younger, I’d point out her other children did not feel this same obligation or react in this manner.  Why did it have to be him always riding to the rescue?

And now that we were older and supposedly past the issue of his relationship with his mother and its impact on us as a couple and family, her diagnosis placed us back into the same old space of discord over her. Scott felt obligated to anticipate her wants and needs, to take care of her regardless of the impact. I felt trapped in an escalating situation with no end in sight. Our kids were old enough now that we could have some freedom, and finally, we could do a few things if we wanted.  Instead, at Scott’s insistence, we were accepting this huge obligation with little or no help from his siblings.  The time frame following her confirmation of illness was not a good time for us.

Two of Scott’s siblings lived close enough to help on a daily basis and two did not. The issue then became, did they want to help and would they help?  And if they wanted to help, would Scott want them too? Scott had the ‘power’ by way of the power of attorney and his relationship with his mother to handle and dictate all that needed to be handled.  How much help would he want or allow? And what would the impact of his need to control every aspect of his mothers care do to us and our lives?

What would and could his siblings help with and how could he control it?  I was automatically involved strictly because I am his wife and although I was allowed an opinion, he was the decision maker, in control of her finances and person.  He treated his siblings in much the same manner as he treated me.  They were allowed an opinion, but the final decision was his alone.  His feelings of reasonability for Belle, which had always been in overdrive, skyrocketed after the diagnosis.  He needed to do more for her and we would just have to make whatever sacrifice was needed.  Although, in my mind there was never any doubt Scott would be the primary person responsible for her physical and financial well being, the fact that our family, as well as us as a couple, would be further impacted by her diagnosis came home with a renewed force.

As time passed, we argued about what was required of us immediately, we argued about what would be required of us in the future and argued about if we could make it through this ordeal.  I pressed, wanting the siblings to do more, be responsible and shoulder some of the burden.  Scott needed to be involved in every detail and control the actions of others, partially to reduce his stress level.   We argued about his siblings and how they felt they fit into the situation. And of course, the siblings, whether close or far, wanted input regarding Belle’s situation (financial and personal), without any of the immediate responsibility. It did not matter that we were saddled with the weekly, hourly and minute by minute care of her, they had opinions and wanted input regardless of their location or involvement.  Over the next few years, the stress and discord between Scott and his siblings would peak, ebb and flow, as decisions were made on Belle’s behalf and old rivalries between the siblings were resurrected.  There were also periods of arrangements and agreements, bonding and support between the siblings as the stress of Belle’s situation impacted each of her children and their families.

Belle had stated many times in my presence before her illness and after her diagnosis that she did not want to burden any of her children with her incapacity.  Growing up, she was impacted when invalid relatives lived with her family. One time in particular, I recall her stating the bedroom she and her sisters shared was given to the ill adult that came to stay and that this adult was overbearing and unpleasant.  She had thought this was unfair. She had also experienced the other side of caring for the elderly, as she had taken care of her mother later in life. Mae had maintained her mental abilities but had long term physical issues and had lived with Jim and Belle for several years before her passing.  Although Mae had been easy to care for, the responsibility of having another person under one’s care, in one’s home, especially a parent, created stress for Belle, who had told me that caring for Mae had placed additional stresses on Belle’s relationship with Jim.

Now, Belle felt she was functioning ‘enough’ on her own and thought by living on her own, she was saving us the same burden she had experienced at various times in her life.  She felt she was trying to be mindful of the personal space that couples needed, although based on my relationship with her throughout the years, I often found this sentiment amusing.  I felt she had had very little regard for the space a young couple needed back when Scott and I first married which had been one of our biggest areas of contention through the years.   But, at this point, although her intentions were good, she had no comprehension of how much time and effort was already being expended on her behalf or how burdened we sometimes felt.  She wasn’t aware of and did not understand the invisible and not so invisible support we provided to keep her living on her own.

I voiced my feelings and frustrations outwardly more often than Scott did, but we both felt pressure and obligation to care for her.  In addition to all the methods being used to keep her living on her own, we rarely went anywhere that she was not with us.  We spent many evenings with her at her home, watching TV or attempting to complete small projects. Although Scott’s family and mine rarely mixed, with the exception of our sons’ birthday parties during their younger years, Belle began attending my family gatherings with us.   We strived to create interaction with her for simulation.  We also strived to minimize the time she spent alone.  Of course, we could not and did not display any of our stressed or obligated feelings regarding the time and effort we were expending for her care and safety to her.  She had not gotten ill on purpose.  We were just trying to live our lives, raise our children, take care of her special needs, be mindful of her feelings and still have time for each other.

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

Chapter Three

In addition to Scott’s closeness to his mother, our oldest son Cooper had an extremely close relationship with Jim, or “Papa” as the grandkids called him.  Since Scott’s parents had moved back into our area in 1983, the close relationships between Scott / Belle and Jim / Cooper led to many of our weekends being spent at Jim and Belle’s country home, in addition to the telephone contact during the week.   The impact of this constant interaction on our marriage is other matter that has little relation to this part of our story except as it will later relate to our involvement with Belle.  However, due to the time spent with and talking to Belle, Scott had maintained his intuitive ability to notice when things were slightly off with her.  As time passed, Scott and I advanced from glancing at each other during Belle’s story telling to discussing other unusual behavior.   And with his antennae up, Scott began to notice more little things. Nothing that was noticed was by itself a reason for advanced concern, but the combination of small items began to congeal our suspicion that something wasn’t quite right.

Belle would tell Scott about an event and regale him with details.  When the information transfer was complete, Belle would start all over again, with hardly a breath in the middle, telling, verbatim, the same sequence of events or story as if the information had not already been recited. Don’t misunderstand; we all repeat ourselves, especially if we have told more than one person and cannot recall who we’ve told and who we haven’t.  (We’ve all been there.) But under normal circumstances when it is brought to our attention that the listener is aware of the details of an event, the teller then recalls having already spoken about it, usually with a laugh included.  This was not the case with Belle.   When this happened the first time or two over the phone, Scott mentioned it to me and we wondered out loud between us what was happening.  The details of her stories were slightly different from the stories we’d heard for years, and she was repeating herself. This type of activity was not normal for her. I began to pay more attention to the conversation between Belle and Scott, providing Scott with feedback, verifying that what he thought was happening was indeed happening and that he wasn’t over reacting or making something of nothing.  When Belle began to repeat a story when speaking to Scott in person, we decided Scott should try little things to see if she knew she was repeating her stories. Belle’s reaction caused us more concern.   After the first telling and while launching into the second, Scott would give clues that he had heard the information already, which she did not seem to notice.  Or he would gently remind Belle that she had just told him the story.  When he reminded her, she would stop talking, hesitate, and glance around.  Then a look of confusion or nervousness would pass over her face.  After a beat or two, without saying anything to knowledge his reminder, she would then continue as if he had not said anything, but with an underlying nervousness in her manner that was also uncharacteristic.  The story would be repeated once or twice more with Scott listening patiently.  I used to joke with him that I wished he had that kind of patience with me.  His reply was his standard regarding Belle: “she’s my mother”.

These were also several instances when we relayed information to Belle that she would, at a later date, be absolutely certain we had not told her.  Her insistence would grow into frustration when we would explain the detailed circumstances of when she was told.  Even with this recount of the event, she could normally not recall it.  Our confidence that she had been told would cause her to doubt herself and on each occasion the situation would diffuse with her laughing and commenting that she must be crazy.  Saying she was crazy became a routine comment for any situation that made her uncomfortable.

The months after Jim’s passing where financially difficult, as money was tight until the country house was sold. Scott began to help Belle, on a limited basis, with her budgeting and bill payment.  We attributed her willingness to let Scott assist with this activity, which once again was slightly out of character, to the stress of her changing financial situation.  While reviewing past payments and check register entries, Scott was surprised to find his father’s writing in the register and upon further inspection, that he had actually been paying bills.  During the years of their marriage it had always been Belle’s responsibility to keep the checkbook register and pay the bills, with Jim carrying around a blank check or two in his wallet for use as needed, and hopefully remembering to tell her he had written a check, so she could account for the item.  But reviewing the most recent register and a few previous registers, along with the checks issued, it was obvious that Jim was handling the checkbook.  This circumstance was highly unusual and we wondered what it really meant.   Later on, with 20/20 hindsight, we decided that the changes we were noticing in Belle had been occurring prior to Jim’s death and he had been slowly beginning to cover for her.   But at the time we just asked Belle why he had been handling involved in the checkbook. Belle could not provide a reason for the shift in responsibility, although she did acknowledge it had occurred and that it was about time he took on some of her duties.

Scott and Susan spent more time with Belle then other siblings during the months preceding her move to her new home in the city.   Susan had begun to notice the repeating of information, the forgetfulness and the confusion that seemed to be involved with Belle’s activities and mentioned it to Scott in passing. However, with Belle in good spirits and some of the issues seeming so intangible, the subject dropped and slipped through the crack of daily life.  During the move, which involved all the siblings, Scott asked everyone if anything unusual had occurred, or if anyone had noticed anything out of the ordinary with Belle.  No one mentioned any concerns or anything out of the ordinary.   Life went on.

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

Chapter Two

Belle Marie was born to a lumber mill family in 1923, a premature first child named for both her grandmothers.  Her parents never had much money and supported their growing family as many families did in the early part of the 20^th century, the best way they could.  Slim worked whatever job was available usually in the lumber industry and Mae was a homemaker.  Through the years, it was not uncommon for an elderly relative with an illness to stay with the family and for Mae to take care of them until they were better or until they passed.  This situation had a lasting impact on Belle which she would recall and recount in her later years. 

Belle was one of the first in her family to finish high school, although she was already married at the time.  She married Jim in January 1941 during her senior year of high school, a few months before turning 18.  Although they had lived in the same rural area of east Texas all of their lives, their families socialized in different circles and attended different churches.  Belle met Jim through his younger sister, who was a classmate of Belle’s.  Jim was two years older than Belle and was already out of school when they met and began their courtship.  Their relatively short courtship often included double dates with Belle’s younger brother Paul with whom Belle shared a close relationship.  The last two months of Jim and Belle’s courtship occurred via mail while Jim located employment in South Texas and Belle attended school at home.  Letters between the two of them during this time frame display her attachment to Jim and her hopes for their future together.

Their life together, during the over 50 years they were married, had its ups and downs and included some volatile, unsettling times.  After the premature birth and death of their first child, a daughter, their four sons (born in 1942, 1944, 1957 and 1958) and one daughter (1962), witnessed good times and bad, with the bad times including displays of their father’s temper or rumors of his infidelities.  Throughout all of her adult life, while raising her children, attending church, moving from home to home, living at the piney woods farm, and relocating to the big city, Belle strived to become a person other than the lumber mill ‘country’ girl that defined how her life had started and what, under most circumstances, her life would have been destined to remain.  She was determined to be a modern woman, a good person with a refined essence, along with being dedicated to her husband.   

As with many women of her generation that dealt with the double standard of the infidelity of a husband, Jim’s activity impacted her with a direct hit to her self confidence.  Somehow, some way, she seemed to think, at least in those early years, his inability to be faithful to her was her fault. Thus, her focus crystallized on prevention through self improvement.  She took study courses in business, art classes, taught Sunday school and Vacation Bible School and became an active participant the Women’s Republican Club, serving as its president for a time.  She studied interior design through mail order courses and magazines to assist Jim with the family business of home building.  She determined what she considered to be ‘sophisticated’ and strived to achieve this desired sophistication in her dress, manner, conversation, interior design of her home and the behavior of her children.   Appropriate behavior was stressed, as it was important to her what others thought of her and her family and to preserve the appropriate perception of her family that had become a measured part of her self confidence.     

Scott is the youngest son of the family of five siblings, with his only sister Susan being the youngest child.  Throughout his growing up years, he was extremely close to his mother and this closeness continued throughout his adult years.  Scott and his siblings grew up, for the most part, on a working farm, which entailed, as farm life always does, many outside chores.  Living in the custom built farm home in the piney woods of East Texas was ideal for the family that had started with virtually nothing and succeeded.  The family members, regardless of age, pitched in to ensure chores were completed.  Scott, it turns out, was allergic to pine trees and pollen.  As one might deduce, this type of allergy is a problem for someone living in the middle of a national pine forest.  Due to this allergy, some of his chore time changed from outside activities to indoor activity,  assisting his mother with chores, such as cooking.  He had an aptitude for this type of activity and his one on one time with his mother created a close relationship that the passing of time, even years,  did not substantially diminish.  Scott became a son that could easily read his mother’s moods, determine her wishes and anticipate her wants and desires without much conversation between them.  He became her confidant. He knew the nuances of her attitudes, speech and stories.  So, in the weeks and months that followed the death of his father, when the stories and behaviors of his mother began to change, Scott noticed, before the rest of us, that something with Belle seemed slightly amiss.

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