Chapter Seventeen-Alzheimers Story Saturday, Nov 21 2009 

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.

Chapter Sixteen-Alzheimers Story Saturday, Nov 21 2009 

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.

Chapter Fifteen-Alzheimers Story Saturday, Nov 21 2009 

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.

Chapter Fourteen-Alzheimers Story Saturday, Nov 21 2009 

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.

New Twists and Turns Saturday, Nov 21 2009 

My parents are aging. I’ve kidded them for years that I’ve done my time with taking care of people that need care and so they just can’t need any assistance.  Hands down.  That’s it.  Before my mother in law’s situation came to be, there were two other situations that my husband and I were deeply involved  in.  One was his aunt (He was POA and in charge of her care for 8 years).  One was my grandmother (assisted my mother with a failing health and dementia/guardianship situation in another state). Both were lengthy and emotionally draining.   Sometimes it feels like my whole adult life has been, in one way or another, touched by taking care of  or assisting with an elderly situation.  So I’ve kidded my Mom for several years now that they just can’t need any help.

So, now it’s become pretty obvious that they are both have issues.  Dad, health and memory and Mom memory.  I’ve known it for some time, but the denial factor has been working overtime.  Really working overtime.  But on the phone yesterday and coupled with another phone conversation today, something just trickled over the edge, and I have to admit, out loud, that I know it.  It’s not time to commit anyone.  But it’s time to face it, the issues are there.  And I’ve been down this road before.  And, at the risk of sounding completely and totally selfish, I ask myself, can I do this again?