My Random Life

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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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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