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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