Chapter Thirty-Alzheimers Story Sunday, Jan 31 2010 

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

Chapter Thirty

Scott and I started to recover.  It seemed that Scott had forgotten how to have fun, be relaxed, and be himself.  We’ve forgotten how to be a couple, have conversation one on one and have fun.  We began to try joint activities and rekindle our relationship.  Although many of our conversation still focused on Belle, we began to speak of other things as well, a habit we had struggled with while she was living with us. We focused on the details of completing our new home, still under construction, such as fixtures and colors. Even with the immediate responsibility of Belle’s physical care removed from us, and the relief we both felt, Scott continued to feel guilty at the need move her to the facility. His regular visits that demonstrated his mother’s well being seemed to help him adjust and although he still felt guilty, the overall impact of his feelings on his demeanor diminished.   The decision to move Belle into full time assistance allowed Scott to refocus on their mother and son relationship instead of the practical, daily care side of their relationship.  He had stated often during the time she lived with us that no son should ever have to dress or bathe their mother. Scott’s stress signs began to ease.  Even as crazy as some of our visits with Belle could get, he was able to laugh and take weird happenings in stride.  Scott began to have more contact with Susan and their strained relationship eased a bit.  We began to feel we had turned a corner and that the worse of it for us was over.

About a month after moving in, Belle suffered an event which left her weak and confused.  It wasn’t the same type of issue as the fainting episodes she had experienced from time to time in previous months. After testing, the doctor ruled out a heart attack, but not the beginning of congestive heart failure or others issues along those lines.  Her heart rate was slower than the previous year, with no visible signs as to why.  In general however, she was otherwise physically healthy.  Belle was still taking high blood pressure, high cholesterol, bone density, and memory medications and we discussed with the doctor if it might be appropriate to discontinue any of these preventative medications.  We opted to continue each one, but the doctor reminded us that we should consider approving a DNR, and having it on file at the facility.  We agreed that no extraordinary measures should be taken in the event of a life threatening event, but that Belle should be treated for pain if appropriate.  Scott completed the DNR and filed it with the facility and the doctor.

We visited Belle for July 4th, during a scheduled family day at the facility.  Belle did not stop the activity she was involved in with the rest of the gang to visit with us.  She waved at us from the middle of the group and it reminded me of a little kid in a school play, waving at the parents when they are suppose to be singing, dancing or whatever.  She’d smile and wave and then try to refocus on what they were doing, while we watched from the sidelines.  Some of the residents had family visit and some did not, but since most residents did not know who belonged to who, it would be a leap to stay they did not know someone did not come to visit them.  It was not uncommon for other residents to think we were there to visit them versus Belle.  Scott had two of the little ladies that followed him around whenever he was there to visit.  He would just jump right in and help them out if they seemed to need anything or require assistance.  Sometimes I think he was better with them than the paid staff, mainly because for those few moments, he was able to focus on them without being responsible for anyone else.

I, once again, worked the closest to the facility (about three blocks away), so I was the first responder in the event Belle had an episode or a complaint that needed attention.  The facility did not issue over the counter medications without permission, so if Belle complained of a headache or cough, they would call me for permission for her to consume the requested item.  If they called Scott, he would give his permission then he would call me to run over and check on her since I was so close.  So basically, I was back on emergency run duty.

The facility used any method possible to create exercise for those able. They tossed soft items between each other while seated.  They rolled a ball around in the same manner.  They often played music and encouraged dance as one of the exercise methods.  Belle, in her changed personality state, seemed to like to wiggle around and dance and often when music played she would stand up in the group and dance.  Scott and I were still often surprised with her action in this area, because despite everything, it was still so out of her previous character for her to dance. On one visit, the group was in the middle of one of these music sessions and Scott joined the circle seated around the living room floor (the dance floor) while Belle danced in the middle of the circle.  As the music continued Belle started a flirtatious dance aimed at Scott and suddenly, without any warning, lifted her lightweight sweater to flash him with her chest.  I was standing on the other side of the room and saw her flash him and saw his expression. Scott was shocked, in more ways than one, as it was certainly not her personality type to flash her chest at anyone, much less him and to top it off, she wasn’t wearing anything under the sweater.   He blurted out in a surprised, choked voice “what are you doing?” while the music continued to play and Belle continued to dance. As she danced around the area a bit more, she moved closer to Scott, smiled coyly, and said in a clear, sweet, flirtatious voice, “if you don’t know, I’m flirting with you.”  I laughed until I almost cried.  Although no harm was done, Scott’s shock and surprise stayed etched on his face for the rest of our visit, which was not very long.  We can both laugh about it now, although for some time after this event, Scott felt it was a reminder of just how strange and impacting this disease was, and how far from normal Belle had become.  He grieved for the loss of his mother.

Soon after Belle’s arrival at the facility, another lady, also new to the facility, attached herself to Belle and sometimes believed that Belle was her husband.  While Belle had for the most part been in good spirits throughout her decline and even with the onset of her angrier levels still tended to be in good sprits most of the time, Bobbie displayed her dementia symptoms differently than Belle.  Bobbie tended to cry or, as Bobbie once told us ‘vibrate’.  Her anxiousness was clearly visible while she paced and wrung her hands.  Now that she had attached herself to Belle, she was constantly at Belle’s side, touching her hair, trying to hold her hand or attempting to talk with her and for her.  Belle’s reaction to this unwanted attention varied.  Sometimes, we would see no reaction at all, while other times she would display signs of stress that would manifest them in amplifying her recent habits.  She might sit by herself, turn her collar up, complain of a headache or that her eyes were tired, a common phrase used when she could not express what she really felt.  She might also refuse to eat when her stress levels were high.  After this situation became apparent and showed no signs of abating, Scott spoke with facility management about the issue.    Bobbie had not adjusted well to her new surroundings and her family had been told they may need to hire a full time helper for Bobbie to redirect her and otherwise keep her from affecting other residents.  The staff of the facility was aware of the issue and was already working on it with Bobbie’s family.   Bobbie was reevaluated by her doctor and her medications were adjusted.  This medication adjustment obviously calmed her down and although she still thought Belle was her husband, the calmer Bobbie was easier for Belle to tolerate.  As time passed, Belle sought Bobbie out for attention and they spent much of their time together.  It was not uncommon for them to hold hands or for Bobbie to tell us that ‘he is just wonderful’ during a visit.   Staff told us it was not uncommon for patients to become attached to one another, and most of the time, no issues arose.

At Christmas time, many families gathered at the facility for a Christmas sing along by the residents.  We were surprised and amused to see Bobbie’s ‘real’ husband present. No one had to point him out to us although later on we were introduced.  His resemblance to Belle was striking, same hair (color and length), same build, and glasses.  We now fully understood how someone suffering from dementia could come to believe that Belle was her husband.

As mentioned earlier, one of our pastimes during this period was to pick Belle up and take a drive to our new home under construction.  Living as a builder’s wife for most of her married life, she was familiar with job sites, and often visits to our home would bring forth a pleasant, relevant comment or two.  Scott would carefully lead her through the work site and she would chatter about whatever came into view.  We often sat at the picnic table we installed at the site and ate a snack.  This activity allowed us to spent time with Belle without stressing her or us.  It was during one of these visits that a moment of clarity hit Belle.  She looked at Scott sincerely, and told him she was proud of him and that Jim would have been proud too.  Scott was taken aback, overwhelmed and grateful.

It was also on one of these visits that we experienced an unpleasant side of Belle’s decline. After visiting the house, Scott assisted Belle back into the car and we took a short drive through the neighborhood.  Although Belle had not indicated that anything was amiss, it was soon apparent that we had an issue. Belle had been experiencing bladder control issues for some time, but she had not had, that we were aware of, had an issue with bowel control.  In that area, she was good at telling us she needed to use the restroom. But, unfortunately, on this occasion, she had an accident.  We pulled into the neighborhood park, which included a bathroom and proceeded to correct the situation.   While cleaning Belle up, she did not seem to understand what was happening and although she kept stating ‘oh my’, I had the impression it was because the water from the tap was cold versus maintaining an understanding that she had had an accident.  This event brought home to us once again, that time did not stand still and that she was losing more and more of her abilities.

As the months passed, we began to notice some things about the facility that caused us concern.  First, with 16 dementia patients all residing together, the atmosphere inside the facility could be frenzied.  Patients can get agitated and when one resident got worked up, it could have a negative impact on other patients.   Several times, when visiting Belle, she seemed upset by the actions of others, and it seemed to cause a bad day for her. A second issue was that residents had access to each other’s rooms and Belle’s things were often relocated to other rooms. Even with her name written in her clothes or on other belongings, it was difficult to keep items from moving around, and we were frequently retrieving her items from other resident’s rooms so she could have them.  It was also not uncommon to arrive and find her wearing someone else’s shoes, or taking a nap in someone else’s room. Additionally, Belle was one of the higher functioning residents and we began to suspect that due to her abilities, she received less attention than other residents.  Some of the other residents required almost constant attention, leaving less time for the caregivers to concentrate on residents at Belle’s level.  Belle needed to be monitored and reminded to ensure she was drinking plenty of fluids and eating or she would just at the table without consuming her food.    Although we felt she was safe at the facility, and we felt in general she was receiving the care she needed, we felt like this attention to detail might be missing.

With the expense of her current home and these attention concerns fresh in our minds, we decided to resume looking for alternative living arrangements for Belle that might have a ‘smaller’ atmosphere, a facility with fewer dementia patients that required attention and a facility that, hopefully would cost less.   The nurse practitioner at Belle’s doctor’s office recommended a specific personal care home not too far from us that catered to elderly with all kinds of issues.  The maximum resident capacity was four at any one time and it was located in a regular house in a neighborhood.  Scott contacted the facility’s owners and discussed at length Belle’s situation and his desired level of care for her. Susan, Scott and I visited the house, met with the owners and as a group, discussed Belle’s situation and our concerns.  We all agreed that the smaller atmosphere would benefit Belle.  We were also pleased that the cost was substantially less than her current facility. In January 2004 we placed her name on their waiting list.

On February 13, 2004 Belle suffered a severe episode and passed out while trying to use the bathroom. EMS was called.  I received the call from the facility as well and arrived at the facility just after EMS arrived.   Belle looked awful and pale as she lay perfectly still and the gurney.  For a moment, I thought she was gone.  EMS worked on her for some time trying to get a pulse or blood pressure reading, and finally, a pulse weakly appeared.  As she began to wake up, Belle was obviously frightened and obviously did not understand what was happening around her and to her. I held her hand, telling her all would be okay, as they prepared her for the ambulance.  As she was loaded into the ambulance, I told her I would be following her and that Scott was also on his way to her.  She whispered thank you.  Mentioning Scott always helped calm her.

Scott, Susan and her husband arrived at the hospital soon after Belle and I.    Tests were conducted to determine what had occurred, as this spell was not the same as the other small TIAs she had experienced.  The diagnosis was that she was dehydrated and had a low heart rate, a similar diagnosis as her last spell when she had first moved to the facility.  The dehydration that impacted her bowels with constipation causing her to strain to vacate and the low heart rate had caused to her pass out under this strain.  The doctor recommended that she receive a pacemaker as a low heart rate could cause to her faint under stress or, in a worst case scenario, her heart could just stop.

Scott refused to approve the placement of a pacemaker. Keeping her body going strong when her mind was gone was just not reasonable.  Although Scott explained Belle’s mental dementia situation to the doctor treating her for this episode, along with our concern she would harm the device by constantly picking or scratching at it under her skin, the doctor was very surprised at Scott’s steadfast denial of permission to proceed.  It was quite obvious that he did not agree with the decision. The doctor seemed to think it was an expense issue and repeated several times that Medicare would cover the procedure.  However, Scott did not change his mind and in the doctors’ presence, Susan and I agreed with Scott’s decision.  It was obvious the doctor did not understand our position or Belle’s mental incapacity.

As we spoke with the doctor, leaving Belle for a brief time in the emergency room under the supervision of others, who had been told that Belle could not be left alone, Belle managed to remove all her tubes (IVs for hydration) and monitors (pulse, heart) by just ripping them off and out of her.   The aid said she only left Belle alone for a moment or two.  Even though this occurred after Scott had declined the pacemaker option, her actions provided ample proof to us that a pacemaker, which can be felt under the skin, would be, in her mental condition, an issue.  We felt it was likely she could scratch at it in the same manner she scratched off moles on her skin.

Later that afternoon, we took Belle back to the facility for the night and explained the situation.  We felt that part of the issue that had caused her episode, which was Belle’s severe dehydration, was directly due to her care at the facility.    They were responsible for monitoring her fluid intake to prevent just this type of situation.  They assured us they were doing all required of them, but would be more diligent with her fluid intake.

The next morning we contacted the owner of the personal care home to ascertain the status of the wait list.  A couple that had been living at the personal care home while he recuperated from surgery was planning to move back to their home at month end, earlier than expected.  So, with perfect timing in our opinion, an opening for Belle would be available at the beginning of the following month.   We made arrangements to move Belle to the personal care home as soon as possible.

Scott called his brothers.  He told them what happened with the most recent episode, what he had decided regarding the pacemaker and about moving Belle to the personal care home.  Mike, as usual, was the most supportive.  He was the least involved with his mother’s care and the most supportive throughout all the phases of Belle’s situation thus far.   Chuck was tentative about another move, but bowed to Scott’s power to decide.  Larry was the most vocal but was at least complimentary of the cost savings for the new location.

Once again timing was on our side and the couple occupying the room Belle would be assigned decided to make their move the following week.  We packed up Belle’s belongs and moved Belle to the new home as soon as the couple had finished moving out.  I re-hung all her pictures and made her new room as much like home as possible. Belle adjusted surprisingly well to the move.  She was the only dementia patient in residence and the slower pace of the home provided her with more ‘good’ days.

Chapter Twenty Six- Alzheimers Story Thursday, Dec 17 2009 

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

Chapter Twenty Six

With their sudden departure, Susan and her husband were not a part of Belle’s or our lives and the ongoing disappointment Scott felt toward his sister remained intact. We discussed this situation often, as Scott tried to adjust to the idea that his sister, whom he had always be close to, was no longer a part of his life. Along with other disappointments that year, we had to cancel our vacation plans for that summer, as we had no one that could stay with Belle. But we adjusted. Scott and I had, throughout our married life, tended to do routine things, such as grocery shopping, together. Now we altered our schedules so that one of us was available to be with Belle when she was not at day care. We included her in routine activities when it was feasible to do so, but often, we chose the route that caused one of us to run the errand while the other stayed with Belle.

After 6 months of no interaction, Susan contacted Scott and offered to keep Belle at her house overnight on a Friday. After much discussion and tension, Scott let Belle go visit. For the first time in months, Scott and I had an evening to ourselves. Deacon was in New Mexico on a road trip with friends. Cooper was in Colorado on a ‘racing’ trip he won. That night, for a little while, it was just Scott and I. Believe it or not, we acted like it was the first time we’d sent a child to summer camp. Scott worried about how Belle was doing, and I was not sure it was a good idea to remind me what I was missing by caring for Belle in our home. It was hard to appreciate the break in responsibility and not feel somewhat burdened by the whole situation. But, with this small gesture, Susan reentered our lives in a limited way.

Belle’s bladder control issues worsened and medication was prescribed, which in the beginning helped. We placed her on a schedule each evening, knowing that we needed to assist her in the restroom immediately upon arriving home and then remind her to use the restroom at regular intervals, in an attempt to prevent accidents. But accidents still occurred and we did not always know when they occurred. Her reaction to each accident was strange. Sometimes she would remove her protective underwear and not replace it with a clean pair, leaving no protection at all. The soiled item would be hidden only to be found at a later date in a undesired manner. Sometimes, when she had an accident, she would rip the ‘padding’ from inside the underwear and flush it down the toilet, put it in the tub, or stuff it in her pockets. She made up stories if asked if she was wearing her protection. Once, when I asked, Belle even went so far as to check herself (by placing her hand in her pants) and tell me she was wearing her underwear, when in fact she was not. The look on her face reminded me of when the boys were small. They knew the answer I wanted to hear and would say it, but the look on their face told me that what they said was not the truth and they knew it. On more than one occasion, we found out the hard way that she had removed her protective underwear and was not wearing another pair. So we were on constant ‘potty’ patrol, checking to make sure she was protected so as not to risk a visible accident, especially if we were in public. We packed and carried a special supply bag with us in case of emergency which included extra undergarments, wet wipes and a change of pants. Discussion with her determined that she knew when she was ‘wet’ and that she should not be, but she wasn’t able to prevent the accident or able to think through the solution which was changing into a new pair of underwear. It was hard to balance the dignity Belle deserved with her level of understanding when dealing a personal situation regarding hygiene and underwear and I am not sure that we were completely successful.

Other odd behaviors included Belle believing Scott, rather than her son, was her boyfriend or husband. It was not uncommon for her to bestow on him overly affectionate attention. She would hold his hand, pet his arm, rest her head on his shoulder, and speak in a cooing, soft tone. Although Scott normally handled the situation easily, at times this could cause him some discomfort, depending on where they were when she acted upon her belief. At times he was embarrassed; however, he was always careful not to hurt her feelings while dissuading her. I always found it amusing that while Belle believed Scott to be her husband she did not believe Scott was Jim.

Although we only had rare occasions of aggressive or belligerent behavior from Belle, which can be common with some Alzheimer’s sufferers, she began to have more bouts of anger or aggression as her confusion grew. Unfortunately, most these bouts were aimed at me whenever she thought I was coming between her and her ‘man’. We became aware that her anger or aggression was more likely to occur if she witnessed us hugging, kissing or engaging in private conversation. We began curtailing any outward sign of affection in her presence. Additionally, as time passed I could no longer help with dressing or bathing her. If I was tried to perform any type of assistance she would become uncooperative and glare angrily at me. Her glare would follow me around the room if I moved, and I found it interesting that she was able to complete this task without ‘forgetting’ she was mad at me. Anger seemed to sustain her ability to recall she was angry. During the worse of her bouts, she would kick or hit me when I tried to assist. When she indulged in this activity, she would lash out and then try to hide her action from Scott, in much the same way a child might hide their actions if they knew what they had just done was wrong. So, to limit the problem as much as possible, I began to assist with more of the background activity that supported whatever needed to be accomplished, such as getting her dressed, while Scott would complete the activity, such as actually dress her. Strangely, however, I was still able to pick her up from day care with a promise to take her to Scott and a bribe of a chocolate shake.

From time to time, her aggressive behavior or argumentativeness was aimed at Scott. Even though this was not unexpected, it is still difficult for Scott to accept. When these situations arose, she would argue with him about the need to do whatever he was trying to assist her with and flash her angry eyes like a child. One instance occurred on a Sunday morning when Scott was attempting to get her ready for Sunday school. As had been arranged years before, her friend from her class was still coming by and taking her to Sunday school each week. That morning, Belle was so argumentative and uncooperative, that Scott finally gave up attempting to get her dressed. This one of the few occasions that Scott became frustrated with her. Her angry words and actions were not new to me. I was accustomed to her lack of corporation. But this activity aimed at Scott was something new. He walked away, frustrated with her behavior and surprised that she would not cooperate with him. She allowed me to help her get back into bed, and she spent most of that day sleeping. Her trip to Sunday school that morning was cancelled.

It was around this time frame that a casual comment by Belle’s Sunday school friend caused us to inquire about her behavior outside our presence. The friend was in the process of dropping Belle off after another trip to Sunday school when she stated that Belle ‘sure liked her music’. Scott and I thought this was a strange comment and Scott asked her what she meant. The friend explained that during the music portion of the service Belle often clapped her hands and stomped her feet. I recall the look of shock on Scott’s’ face when he heard this explanation, as this church was not a stomp your feet clap you hands kind of place and Belle would never have considered such actions prior to her illness. Her carefully crafted façade would not have allowed it. Although Belle had been clapping her hands and dancing around at home when music played, but it not occurred to us she might be behaving in this manner at church during a service. The friend went on to tell us that when Belle had first starting this activity it was quiet and controlled, but the recently, she had expanded her movements. Although the friend did not say specify she was embarrassed by Belle’s actions, I felt she had brought the subject up for just that reason. Not long after this discussion, the friend had some health issues that kept her from going to church for an extended period of time. When the friend resumed attendance, we felt it was a good time for Belle to stop imposing on her friend’s good will each Sunday, and Belle stopped going to Sunday school.

Items went missing around the house, only to turn up hours, weeks or months later. We were careful not to leave anything small in view, as it may well disappear or end up in Belle’s pocket. The worst instance of disappearing items involved my keys. I had long ago learned not to leave my purse or any other personals item in view. On this occasion, I placed my purse and keys on a piece of furniture by the front door because my hands were full. Belle and I had stopped at the grocery store on the way home and I was carrying in groceries. I swear that I did not leave my purse in that location for more than a minute or two before moving my purse into my bedroom. I did not recall until later that my keys had not been in my purse, but placed next to it and when I moved my purse my keys were not lying where I had left them. Later that evening, when I attempted to locate my keys to retrieve something else from my car, I could not locate them. My keys were not in my purse or anywhere else I had been during the evening. When Scott arrived home we spent most of the evening trying to find my keys which contained car, home and security keys belonging to my employer. We had no luck. In fact my keys remained in limbo for over 6 months and where finally found in the most unlikely of locations. While picking out jewelry for Belle to wear with an outfit to Sunday school, I found my keys hanging on the carousel of necklaces in Belle’s jewelry box. I laughed until I cried. How she could have spirited them away and hid them so carefully, I will never know.

Chapter Twenty Five-Alzheimers Story Monday, Dec 7 2009 

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

Chapter Twenty Five

Susan and her husband disappeared from our resources as helpers. We were disappointed at their behavior and at the suddenness of the departure. The break was so complete that Susan failed to call Belle or give her a card on Mother’s day that year and did not have contact with her or us for almost six months.  Scott was a mixture of emotions regarding this situation.

We created routines for almost all activities involving Belle, so we could tag team our way through the mornings and evenings and ensure her needs were taken care of.  Since she tended to cooperate with Scott with more ease than she did with me, Scott continued to be point man for most issues regarding Belle.  Along with getting her ready to go in the morning, he handled the day to day delivery of her to day care and we shared the afternoon retrieval of Belle from day care.  Scott kept his routine of walking off his frustrations on the jogging paths downtown several times a week, and on those days, I picked her up.

Although Belle had been physically with us at least half of the time prior to Susan’s departure, the room she used as hers was our guest room.  With the transition to full time residence, we moved her bedroom furniture into our guest room.  Her belongings were placed in the room and I decorated her bedroom walls with her family pictures from her previous room, using the same plate rack holders, so Belle could continue her habit of moving items around.  I incorporated some of Belle’s collectible and family items, ones I thought she might recall, into our décor in the main living areas in an attempt to display to her our home was her home.

Since she was no longer able to take care of herself, we determined that her house would need to be sold and we started working on that project along with adjusting to full time care for Belle.  Scott and I shifted through furniture and belongs, determining what should be kept for use, what should be packed, and what needed to be given to others in the family or sold.  A time frame was established for sale of the house and the furniture was divided up between those family members that wanted it or that Belle had designated should receive it.   The issue in the yard that had caused the house to flood with run off water needed attention and Scott coordinated the needed correction.  Other repairs, some of which were to correct the ‘decorating’ Susan had completed on the house before moving, were scheduled and completed.

During the months that followed, we asked as needed for assistance from our available resources, some of which could help with Belle and some of which could help with the sale of the house.  We asked the real estate friend that had helped with the purchase of her city home so many years ago to help sell this house. We engaged my parents more in the process and they assisted us when we asked. Mom helped pack and Dad waited at the house for service people for needed repairs.   We asked for more assistance from Chuck and his family and they would take Belle for a day or Chuck would stop by for an evening and sit with her.  This assistance continued after the sale of the home. We asked for more assistance from Cooper and Deacon.  Cooper was more removed from the situation due to not living at home with us but he assisted with sitting with Granny on some occasions at our home.  During the transition period and during their time sharing the upstairs of our home,  Deacon was invaluable with his assistance with Granny.  They maintained a good relationship throughout and his easy going manner allowed him to work well with her without much display of frustration.

Although she had been living with us half of the time before the full time move in, the move to full time was confusing for her as she still believed she really lived next door.  After dinner in the evenings, Belle would push back from the table and announce it was time for her to go home, she had things to do.  We would gently explain she lived with us now and she would pretend to recall this, often repeating she did not want to be a burden.   And each night the scene would be repeated time and time again.  She was upset the day we arrived home from picking her up from day care and the ‘for sale’ sign had been placed in the yard.  She asked repeated why the sign was in her yard.

Belle became skilled at ‘sneaking’ away from our house and attempting to break into ‘her’ house, fully believing she had somehow managed to lock herself out.  Since normal access between the houses while Belle had lived next door was through the gate in the backyard which Scott had now removed, Belle would often make her way into the back yard and then be confused as to why she couldn’t get to her house.  After she managed to leave our house though the front door without being noticed a time or two, we placed bells on all our doors so we hear the door open if she tried to leave the house when we were not in the room to see her leave.    While her house was still on the market, if she insisted she lived next door, we would unlock the house for her and show her it was empty, once again explaining she lived with us and why.  After it sold and the new owners moved in, we spoke with them regarding Belle’s behavior, on the off chance she would try to break into the house or be found in their backyard.  We reminded her she lived with us each time she tried to return to the house next door or commented on going home. Eventually, she stopped trying to sneak away and go home, although we left the bells on the doors in place so she couldn’t open a door without us knowing about it.

Despite everything and her reduces abilities, Belle still had the ability to surprise me.  May of that year was nice and warm and Belle and I spent some of the early evenings sitting on the front porch swing, watching the neighborhood until Scott would arrive home from his evening exercise.   Sometimes we talked and sometimes we didn’t.  One conversation during this time frame still sticks with me.  As we sat on the swing, Belle once again, said ‘I think I’ll head on home’ and once again I reminded her she lived with us now.  She gave it some thought, frowning slightly and I explained (again) that the house had been sold, that she lived with us, and that she needed some assistance with daily activity like her medications.  I also explained to her that I understood she had problems understanding time and specifically how much time has passed regarding the events leading up to that day.  I stated that I thought losing time in this manner must be difficult.  Belle looked me in the eye, held my gaze for a few seconds and said it was more than difficult, is was frightening.

Her statement was emphatic. This moment was one her of rare moments when she was present.  It stressed for me that there were times when she understood the extent of the decline of her abilities.    Those times did not happen very often and were very fleeting.  After her statement, we sat in silence for a brief moment.  Then Belle turned to me, smiled and inquired “how about we head over to my house?”  And I again explained she lived with us.

A day or two later, after arriving home and heading into the house, Belle grabbed my hand and insisted I accompany her back outside.  She kept tugging on my hand and began leading me toward the front door.  When I followed without resistance, she led me into the front yard, pointed to the survey stakes in her front yard and demanded to know why those stakes were in her yard.  She understood what the survey stakes were and understood that their presence meant the house had been sold.  And she demanded to know why her house was surveyed.  So I told her again.

It was often difficult to know what she would be able to understand and what she could not understand.  It was almost impossible to assume she would not understand something and we found ourselves explaining thing to her in detail hoping this would be the time she understood.  During this period in her decline, she had days when repeated explanation or instructions were required to accomplish the simplest tasks.   Alternatively, she had days when she existed without questioning the activity around her.  She did not question why she needed help getting dressed or undressed, did not question why she needed help taking a shower, did not question wearing protective undergarments, and did not question going to day care.  On these days, she did what she was told to do to the best of her ability obviously not understanding very much of it.   As the first months stretched on, we perfected the routines that centered on her care and time tables.  I continued to use my tricks and methods to gain her corporation in Scott’s absence and will admit to, on more than one occasion, resorting to threatening to tattle to Scott on her to gain her full attention or corporation.  If she recalled anything at all, it was that she did not want to disappoint Scott.

After the bulk of the larger items had been distributed to family members, one of my remaining jobs was sort through the paper of her life and determine if it needed to be kept, and if it needed to be kept, by whom.  Maybe ‘needs’ is a strong word, as some of the items were sentimental, but did not ‘need’ to be kept.  The items I determined would be of interest to others would be given to them. They made the final decision if it is important enough for them to keep.

As with many members of their generation, Belle and Jim kept everything they ever received, I swear.  Cards, letters, notes, clippings, locks of hair, scrapbooks, you name it, and they had it.  I read through quite a few of the various items while sorting them and contact with this level of personal belongings provided me with insight into Belle, her decline, her relationship with Jim and the family dynamic as a whole.  Most of what I read made me feel distressed for Belle.

Throughout their marriage, in almost every instance of Belle writing to Jim, whether in card or letter form, she seemed to be begging for Jim’s attention, gushy with love and innuendo that did not fit the sophisticated facade she had crafted for herself.  This tone became worse during time frames that featured infidelity.   Jim, of course, was not interested in voiced emotion and was very sparing with nice or reassuring things to say. I felt saddened to know this intimate side of their lives, but felt it gave me a better understanding of her.

As I sorted through her things, I also began to see signs of her decline to come in her cards and letters of the past. Based on the extra ‘notes’ she has written in and on some of items, it was also evident she spent much of her time when home by herself, sorting through this memorabilia and trying to remember.  She made notes in shaky handwriting that was obviously added later and, most of the time, getting whatever was written on the item wrong.  Since time is one of the things she could no longer grasp (it was one of the first things to go) notes about when something happened, written over the note made at the time, could not be replied upon.  In the process of trying to remember and reviewing the papers and mementos Belle had actually ruined some lovely sentimental items by writing all over them with wrong information.   Reviewing her notes to herself and her notes on personal items, leads me to believe she was at home by herself longer than she should have been.  She was experiencing more difficulties than we had believed at the time, a problem I feel is common when family members are trying to assess the abilities of a mentally disabled parent.

Belle had pictures of her parents, siblings, children, spouse and grandchildren that were not organized in a way we could use to sit with her and “recall”.   As I sorted through many of these items, I decided it might be nice to create a memory book for Belle that included the pictures of her family.  I started gathering pictures and came up with a plan for creating two memory or picture books for her.  The first book focused on her grandparents, parents, and siblings and the second book focused on her children, grandchildren and great grandchildren.   I made sure as I pieced the books together that I labeled each picture with all the information I had available to me.  As an example, if a picture of a grandchild was displayed, I listed their full name, nickname, age in the picture, birth date and parents.  If I included an old picture that Belle had written info on the back, I placed that information on the page with the picture.  When the books were completed, Belle enjoyed  flipping through them.  At times it seemed that the books seemed to help her recall specific items briefly.  Often if Belle had a family visitor, the books would be used to spur conversation with Belle, allowing the family member to visit with her, even if that visit was in the past.  Since her ability to have meaningful conversation no longer existed, the books were often the catalyst to a pleasant visit or evening.  We spent any an afternoon or evening slowly turning pages, looking at pictures with Belle reminiscing to the best of her ability.

Not long after coming to live with us, Belle developed a habit of telling Scott she was going to ‘whoop’ him, with the accompanying hand motion for spank, if he didn’t behave.  Her statement could pop out at any time, but normally accompanied him directing or assisting her in some manner.  She went so far as to swat him on his behind a time or two in conjunction with her statement.   The first few times Scott thought this situation was funny, but when she repeated this action several times a day for days in a row, he found it difficult to accept.  Scott was no longer a little boy and Belle was no longer functioning as his mother.   Scott and I began to have more conversations regarding his grief at the loss of his mother.  Belle may be present with us, but the mother he grew up with no longer existed.

Chapter Twenty Two-Alzheimers Story Sunday, Nov 29 2009 

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

Chapter Twenty Two

 

 

The extended family in East Texas frequently asked how Belle was doing and I developed a monthly email that updated family members that wanted to know about her situation.  Although I wrote the emails that were sent to the group, I would confer with Scott before sending the email out.   We had determined pretty early in Belle’s illness that Scott and I did not see eye to eye when presenting a description her abilities.   I used to laugh sometimes at how far apart our descriptions of her abilities could be.  I was all about plain talk, and Scott, from my perspective, wore rose colored glasses.  When we spoke about this gap, Scott always stated he wanted to give Belle the benefit of the doubt.   I always said I knew what happened wasn’t her fault.

Up to this point in time, Scott and I had tried to keep including Belle is as many of the extended family events as possible.  The three of us attended family reunions, weddings, and funerals and we assisted with relatives that wanted to come and visit her at home.   Most of the trips we completed where short hops of 3 to 4 hours one way, and for the most part Belle handled these trips with a minimum amount of confusion.  She enjoyed visiting with those familiar to her.  And we were always surprised at how well she could cover when failing to recall who she was visiting with. As always seems to happen, one event brings home the truth of  the situation and one of our trips to east Texas, made the issues Belle faced very clear to me.

Funeral services normally have an order of attention.  Those most directly impacted, such as the immediate family receive the sympathy and support of the attendees.  Other family members normally provide the support and sympathy, and do not receive the same level of attention of the immediate family.  In November 2001, Scott’s cousin, a young mother in her mid 30’s that was also the child of Belle’s brother and sister in law she had stayed with during Susan’s recovery, passed away after a year long illness.  We made arrangements and traveled to east Texas for the funeral service and Belle was with us.  Since so many attendees were traveling to the service from various distances, the church had a buffet meal prior to the afternoon service and we met several of Belle’s siblings along with other cousins in the reception hall during the meal.  Prior to arrival, we had reminded Belle of the purpose of the trip, but once in the reception hall, she could not recall who had passed away.

We had attended several funeral services with Belle since her illness had become more advanced without incident.  However, this gathering was different. Belle was visibly upset at the sight of her saddened brother, the father of the cousin that had passed.  She clung to him, clutching his hand and petting his arm, refusing to release it even at his request.   It was my impression that she believed  her brother was there to support her for a loss she had suffered rather than the other way around.    Scott distracted Belle, gently removing her grasp on her brother, to allow him to receive comfort from others in attendance.  As the event progressed, Belle’s emotional state became more distraught which negatively impacted her other abilities.

We had begun the practice of escorting Belle to the restroom about every two hours in an attempt to avoid accidents, even though she was wearing protection. In public, assisting her in the restroom was always my responsibility.  Before the beginning of the actual funeral service, we suggested a restroom trip, and I escorted Belle to the facility.  The restroom was crowded and we had to wait for a stall.  As we waited Belle began speaking with the lady waiting in line behind us in a manner that led me to believe Belle knew her.  I had been a  family member for many years, but at reunions and other gatherings, I did not always know all the family members.  In this instance, based on Belle’s conversation, I believed Belle was familiar with the lady.  Belle began to attempt to grasp the lady’s hand and illicit sympathy for her own loss, once again seemingly believing that Belle was the one to be comforted.  I realized Belle did not know the lady (and the lady did not know Belle) by the look on the lady’s face.  I interceded, extracted Belle from the lady and ushered her into the now available stall.  Once Belle was in, I apologized to the lady with a brief explanation that Belle was disabled.  The look on the lady’s face told me she was not convinced, and to be truthful, Belle did not appear disabled.  At the graveside service, an immediate family member introduced us to this same lady, who was a friend of the family, who kept her distance and indicated she had already met us.

Belle’s obvious personal grief, confusion and misunderstanding of appropriate actions in this situation caused us to reassess her attendance at similar events in the future.  We wanted to include her as much as possible, but did not want her to be hurt or suffer such feelings of fresh loss and confusion.   We only attended one more funeral with Belle in the fall of 2002, the funeral of her last aunt, to whom she had been very close.    As time passed, we stopped attending other types of family gatherings that required overnight travel.  Belle required restroom and personal hygiene assistance that tended to make road travel difficult and changes in routine by the travel itself created bad days for her.  If we attended an event without her, it seemed that others did not understand why we had not brought her with us.  Rather that trying to explain time and time again the reasons Belle did not travel with us anymore, it became easier not to attend at all.

Chapter Twenty One-Alzheimers Story Sunday, Nov 29 2009 

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

Chapter Twenty One

Every family and individual deals with stress and worry in different ways and every Alzheimer’s patient declines in a different way. The stress in each of us became evident in several different ways.   Watching the decline of a loved one and dealing with the issues created by that decline is not an easy or desired task.

Scott internalized his stress.  He began to suffer from bouts of severe gastro acid reflux with severe heartburn and was assigned a medication regime to attempt to offset the symptoms.  He had events of elevated blood pressure which would result in fatigue and headaches.  He bought a home blood pressure cuff and followed doctor’s orders to track his blood pressure, which seemed to peak in times of high stress. His temper was more likely to flare at small things that were not normally an issue.  Always prone to be judgmental, his opinions on right and wrong, regardless of the topic, sharpened.  Without considering any other aspect of stress, sharpening one’s opinion of right or wrong, proper or improper can cause friction between any two parties.  Although Scott had never been a teetotaler, his intake of alcohol increased.  It came more common for him to consume an evening cocktail, sometimes two, even though this type of activity had not been a habit in our home.  Although understanding through use of rational thought processes that we needed to laugh about some of the things Belle said or did, Scott might react badly if he perceived that his mother was presented in a bad light during a story. Scott’s focus on Belle and her care was the number one item in our lives, with all activity in our lives being centered on that responsibility.  We began to do more things separately, because any joint activity had to be planned to consider Belle.

My stress manifested itself in other ways. I began talking more with others, relaying situations and events involving Belle.  Coworkers became completely aware of my situation at home and with Belle being the focus of our lives; she became more and more the topic of my conversation.  I spent time researching dementia websites and reading stories about caring for suffers and even entered a comment or two on what would now be called a blog.  Scott and I had more disagreements, some about Belle, some not, and were more prone to bouts of yelling at each other for no real reason.  I began to struggle with weight gain, as food became my comfort.   I also started disagreeing with Scott just to disagree or pick a fight.  It seemed that feeling bad was at least feeling something and arguing was interacting.  Previous to this time in our lives, friends were ‘our’ friends.  As we began to do more things separately, we began to have separate friends.  This situation added to the things we could argue about, increasing the stress level between us.

Others associated with Belle’s care displayed various signs of stress as well. Deacon began to act out, drawing attention for his bad behavior.  His grades declined.  He spent an increasing amount of time in his room or at friends’ homes, away from the stress radiating from next door and in our home.  He also became more vocal about our fighting, chiding us for our disagreements.  And it was his comments, in part, that caused us to seek group therapy for assistance, support and venting.  Cooper avoided activities that included Belle, and displayed obvious unease when in her presence.   He commented on our arguing, commiserating with Deacon over the situation Deacon was stuck in. Susan and her husband also displayed signs of stress, with increased drinking and displays of anger at us and at each other.  Susan’s complains about her role and responsibility in caring for Belle became more constant and insistent.  Scott began to complain that Susan was complaining and as their communications focused on Belle, their relationship continued to erode.

Susan developed severe gastro acid issues, which had began with reflux, and developed into a more severe form of esophageal spasms which caused her to, at times, not be able to swallow food, and in the worse cases, vomit whatever she had eaten before it ever reached her stomach for digestion.  After many months of doctor visits, tests and discomfort, and after delayed diagnosis, the problem was identified.  After several non surgical fixes were attempted without success, surgery was recommended.

Plans were discussed and I recall the panic in Susan’s tone when she considered recovering from surgery at home for several weeks with Belle at home with her.  Recuperating would need to be restful and non stressful.  Life with Belle was not restful or stress free.  Our experience with Scott’s back surgery, when Belle was at a higher level of function, proved Susan’s point.  She would have a difficult time with recovery if Belle was home to ‘help’ her. So Scott and Susan discussed the matter at length, searching for a suitable solution to allow Susan the time she needed to recover while not negatively impacting Belle.  Of all the options discussed, having Belle away from home both during the day and at night was required.

Susan suggested and Belle’s brother and sister in law agreed, to invite Belle stay with them for a visit during Susan’s surgery and recovery.   They were aware of Belle’s condition and eroded abilities but felt that the visit would be good for Belle.  They were both retired and therefore home during the day.  Belle would not be left alone while away from home, which would be a concern in an unfamiliar place.  Scott and I discussed the pros and cans and felt that Belle, who abilities diminished whenever a routine was broken, might have a bad day or two upon arrival, but would be able to rebound and enjoy her stay.  Scott spoke at length with Belle’s sister in law, explaining Belle’s situation and decreased abilities in much more detail than in previous conversations.  As they lived about four hours from us, travel arrangements were discussed and agreed upon.  We would meet them halfway at an agreed location and Belle would stay with them for an extended visit of two weeks.  At the end of that time, we would all meet again at the half way location and Belle would return home.

Overall, Belle’s visit with her brother and sister in law was uneventful and calm.   They did learn, however, through personal experience the difference between an intellectual explanation of the effects of the disease, and the day to day function loss of the disease.  When listening to Scott explain Belle’s decline and limitations, Belle’s her brother and sister in law, in good faith, were sure they understood how Belle’s decline had impacted her and were prepared to assist her as required.   As her visit continued, they were surprised and saddened, that this person they both remembered as a vibrant, sophisticated woman was no longer the person they knew.   The changes in her personality and  memory were harder to accept than the decline in her functionality.  Belle’s return home after her visit was uneventful and Susan’s recovery went well.

Over the years since Belle’s diagnosis, I’ve often thought that interested parties think they understand the impact of Alzheimer’s, and I think often intellectually, they do understand it.  But, until one experiences the decline of a loved one first hand, on a day to day basis, true understanding is not achieved.

Chapter Eight-Alzheimers Story Friday, Nov 13 2009 

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

Chapter Eight

Memory loss or confusion was not Belle’s only symptom.  Other issues began to erupt and it was difficult to handle them without being overbearing or accusatory.  In addition to our phone calls and frequent visits, Deacon spent more and more time at Granny’s house, partly to help her, in theory, with her projects and paper sorting, and partly to report to us what was really happening during the day.  He become a mini adult and often assisted Belle with minor decisions and reasoning.

What was reported was that Belle was not eating or when she did eat, it was sweet items, mainly cookies and ice cream. With this news, Scott’s morning check in calls began to include reminders to eat including suggestions regarding what to eat.  Afternoon calls or evening visits included questions regarding what she had eaten.  We began checking on the contents of her pantry or refrigerator in an attempt to verify her meal intake.   She always had a ready answer for what she had eaten, even if it turned out not to be true.  We started bringing meals over and eating with Belle more often or having her join us more often for restaurant meals so we could ensure she was eating.  Sweets on hand continued disappear first.

Although Belle had never had a weight problem, she, like most women, felt like she did.  Jim was not a man who wanted an overweight wife and part of her self improvement routine throughout the years was to prevent being overweight.  She closely monitored her weight and it was not uncommon for her to eat light, small meals.  A standard breakfast might be grapefruit juice and toast.  However, now her eating patterns, which had been standard in her life for years, were changing or being forgotten but the underlying concern, strangely enough, over her weight remained intact. She began to display some weight gain as she now preferred meals of ice cream and cookies, even as she lamented over putting on weight.   Deacon, during his lengthy stays with her, was used as an excuse for more frequent fast food runs, including hamburger and shakes, one of her most nostalgic meals, with Granny telling Deacon there was no need for him to tell his Dad.  She was eating sweets in much larger quantities than ever before and still weight conscious.  It was not uncommon for her, when eating a meal with us, to skimp on her calorie intake, while mentioning her concern over her weight.