Chapter Twenty Nine-Alzheimers Story Wednesday, Jan 20 2010 

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

Chapter Twenty Nine

The facility we selected was expensive and catered to persons with Alzheimer’s/dementia.  It was built for that purpose and was basically a house with 16 bedrooms.  It had a nice, large oak filled back yard that afforded the mobile residents outdoor time if desired. The front door of the facility was locked with a security entry system to ensure residents couldn’t leave without permission. The facility boasted a nice living space and separate dining space that allowed for group activities and family visits. Belle would have her own room and bathroom with a commode and sink.  Baths were taken in a special area with a special tub with a door so that residents did not have to step over the side of a tub into a shower.  (We had worried about this situation at home with Belle.) The facility had a hairdresser that came in once a week and used the small hair salon to keep the residents looking their best. All in all, it seemed like a perfect fit. The individuals in residence were at all different levels of assistance, from those requiring a hired helper to those like Belle, that were mobile and maintained a small level of self ability.   After the doctors and facility’s assessment of Belle were completed, all involved agreed her needs would be met. We finalized our decision with a deposit which confirmed we would be placing Belle at the facility and started the expected six month or more wait.  The day care would close down before the estimated 6 month wait was over and we worried about how we would manage Belle during the gap. We discussed the possibility of each of us taking shortened work weeks and tag team staying home.  We both had some leave time built up and if our employers would cooperate, we could care for her at home without too much of a financial impact on us. I checked on how my work laptop could connect from home, hoping I could work some from home while still caring for Belle.  However, in mid May 2003, just as we finalized the decision, the facility notified us of an opening beginning in June.  We agreed Belle would fill that open slot. We called Scott’s siblings and explained the decision. 

When the time for her move was close, I channeled my emotional energy into all the needed activities. I took two days off from work and began preparing for the move.  I made copies of favorite family pictures from her bedroom with us, framed the copies and placed name labels on the glass over the picture.  I thought the labels might help her recall her loved ones and also allow caregivers to engage in conversation with her regarding the people in the pictures.  I thought if she mentioned a family member by name, the caregiver could point out the loved one to Belle for reference. I made sure that each immediate family member was featured in a picture.  I coordinated preparation for the rest of her personal items and furniture she would be taking with her, including the memory books of family pictures we used to assist her with conversation and recall.  I marked all her clothes, sheets and other items.   I coordinated with the facility to get her room painted a light cheery pale yellow.   Scott coordinated her medication transfer, as the facility required bubble packs versus loose mediations in a bottle.

On June 12th, the day before Belle’s scheduled arrival, Scott and I delivered her belongings to her new room.   I set up her room by arranging the furniture, hanging her pictures and placing her clothes in her closet.  Our plan was to have the room ‘hers’, familiar and comfortable, before she arrived.  We wanted her to feel settled and at home to ease her transition.

On June 13th, Scott and I accompanied her to her new home and stayed with her while she inspected her new surroundings.   The attention to detail and care taken to make sure she was comfortable in her new surroundings seemed to work and as she explored her new room, she moved from picture to picture, reading the names out loud or laughing.    She immediately began interacting with other residents and after watching her for awhile, we decided it was time for us to leave.  Susan had originally planned to accompany us when we brought Belle to her new home, but Susan’s plans changed, and she promised to visit her that evening and let us know how things were progressing. So, with some reluctance, we started our goodbyes.  I watched Scott closely as I was sure he would crack under the stain and the guilt he felt that we could no longer keep her at home.  He kissed her and told her we’d be back later to visit and that Susan would be by to visit later.  He helped her settle in to a seat in the dining room to eat her first meal at her new home. As we left the facility that day, I watched as Scott cried for the first time in many years.   

We were concerned that the change in living arrangements would negatively impact Belle’s abilities.  We were concerned that she was past the ability to adjust to new surroundings. The staff at the facility told us that sometimes families wait too long to place a loved on in a facility of this nature out of guilt and by the time the person comes to live at the facility the transition is not smooth.   They are in new surroundings that are not familiar and they cannot recall why.  But Belle adapted very well to her new home.  We were thrilled she still had enough ability to adjust.  Sometimes when we came to visit, she acted as if we are interrupting her business.  We purchased wind chimes for the back yard and large flower pots with blooming flowers which Scott and Belle tended on our visits.  We ate meals with her in the dining room, watched movies with her in the living room or sat with her in the backyard swing.  Belle seemed to believe the facility was her house and would turn off the lights others turned on.  We laughed on more than one occasion when she complained to us that these other people in her house were wasting electricity or would wonder out loud who all these people at her house were. 

We began a routine of at least one weekday and one weekend visit, unless something dictated otherwise.  We frequently took Belle for drives to look at fall leaves or Christmas lights. Sometimes we drove out to her old country home or by other places from her past.  Sometimes we drove out to our new house, still under construction, and drove through what would be our new neighborhood, pointing out flowers, trees and house designs we thought she would like. Many times, if a house was pointed out, she would comment that Jim had built it, when of course he had not. She continued to like chocolate shakes, so sometimes we purchased the treat and just drove around while she drank it. Susan also began to visit regularly, taking Belle out of the facility for manicures and snacks.

Chapter Twenty Eight-Alzheimers Story Wednesday, Jan 6 2010 

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

Chapter Twenty Eight

In late 2002, Scott and I decided that the two story structure of our home was no longer conducive for Belle’s care. She was having more difficulty navigating the stairs, and the upstairs bathroom was too small to be able to assist her in the shower without being a contortionist. We needed a one story home with a larger bathroom. We discussed looking for another home in our area and decided we were tired of living in the city.  We bought a few acres about 30 miles away outside of the city, in a small town within commuting distance.  Using the information gathered during all of our years of touring model homes and homes under construction, we began designing a new home to be built with our wants and Belle’s needs in mind.  The project gave us something to focus on besides Belle.  We spent at least one weekend day, with Belle hanging out with us, clearing the heavily wooded lot, roughing it, and in general having a nice day.  We committed to the project and began to make plans accordingly.  We again had something fun to work on together. 

Belle began to have recurring episodes of what appeared to be fainting.   The first one occurred in November 2002 when Belle was visiting with Chuck and his family the day after Thanksgiving.  Belle was suddenly weak and more confused than normal.   Then she slept for an extended period of time and seemed to be her normal self the following day.  Scott spoke with her doctor, and was told that this was not uncommon and not to worry.   The doctor mentioned that we may want to consider placing a DNR in Belle’s file.  Between November and March Belle had one or two small episodes, and then would bounce back.  In early March of 2003 the worse of these spells to this point occurred while Belle taking a shower with the assistance of Scott.  She went slack and then passed out. Scott caught her before she hit anything, injuring his back catching her dead weight and yelled for my assistance. Between the both of us, we were able to remove her from the shower/tub enclosure and although the upstairs bathroom was very small, we were able to maneuver in the tight space and lay her on the floor of the bathroom.  Unlike the previous spells that involved passing out and then confusion, this time she experienced loss of bowel control.  Once we placed her safely on the floor, we were able to clean her up, dry her off, and attempt to ascertain her condition.  She regained consciousness quickly but was highly confused and sleepy. We managed to get her into bed and she slept for hours.  This spell was more severe than some of her previous spells and we once again had her checked out by her doctor.   The doctor stated her spell had appeared to be a TIA (mini stroke), which is a common symptom of Alzheimer’s due to the brittleness of the blood veins.  He also spoke to us again about placing a DNR on file.

Although she appeared to be fully recovered physically from the March episode, we noted an increase in her anger levels.  She began to lash at both of us more often, and seemed to, in general be more moody and less cooperative.  Her hostility at me was obviously increased. She became uncooperative and belligerent without any reason.  In the past, she would normally follow instruction provided by Scott, but now instances of balking at his instructions and refusing to cooperate increased.  Without her partial cooperation, my ability to assist Scott with her personal care markedly diminished causing the majority of the physical care to be provided by Scott, as even with her resistance, she still would cooperate more easily with him than me.  I assumed even more of the background support functions and Scott assumed full lead with Belle.  I began to see obvious signs of stress in Scott.  He was obviously physically, emotionally and mentally fatigued. 

After careful consideration, I suggested it might be time to start investigating other living options for Belle.     Our ability to care for her at home was becoming increasingly difficult, and at the same time, it appeared access to day care might be discontinued, which would make keeping her with us impossible. The adult day care Belle was attending each day as a paying customer was slated to lose its state funding with budget cuts the theme of the day.  When the funding for the day care facility was suggested as a place to cut back, I tried to fight the cut backs by writing letters to each legislator, explaining in detail the hardship the closure of the facility would cause for the families that used the facility.  I also explained that some of those using the facility were paying customers, even though the facility relied on state funding for its survival.  Most of my letters did not receive a response and the one that did was a form thank you letter. 

Scott struggled with the idea of Belle living elsewhere and not being under his watchful eye the majority of the time.  He seemed to think that it meant we had failed in some manner if Belle was placed in any type of facility care.  We discussed the situation repeatedly during the later part of March.  My position was that we had been frugal with her funds, investing them carefully, so that when the time came that she needed more care than we could give, we would have alternatives available to us and that she would have enough funds to be able to pay for her care as long as she needed care.  We had always known, in the recesses of our minds, that we would not always be able to provide Belle’s care ourselves at home, and I felt, it might to time to look into what alternatives were available to us.  Scott finally stated that he just couldn’t push himself to research this area, but if I thought it was best and time to complete the research, he would listen to whatever I learned.  I began performing research for what types of assistance was available and what it might cost.

Dementia suffers require a specific kind of care that is not often readily available at most facilities that offer elder care.  Many facilities cater to the loss of physical function or a combination of loss of physical and mental function but are not equipped to deal with dementia of an able bodied person.  I quickly determined though reading articles online, speaking with staff at her doctors office and speaking with several administrators from some of the local facilities, that Belle would require specialized surroundings catering to dementia patients that were still mobile and that she was past the assisted living stage of care normally offered.  Her assisted living stage had been occurring when she was living next door to us and with us.

I located several local facilities that touted providing appropriate assistance to patients with dementia issues.  We checked out references for each location and based on the information received, decided to visit three of the facilities.  Two of the facilities were general elder care, with Alzheimer’s wings, and one facility was strictly for the care of patients with Alzheimer’s.  We made appointments to visit each facility on different days, as Scott was sure three visits in one day would be overwhelming to his guilt level.   As we made these plans, we were also told that Belle’s day care program was definitely slated for budget cuts and would be closed down later that summer.   

With the closure of the day care program looming, we were in a time crunch for addressing Belle’s needs. She could not be alone during the day, and we couldn’t afford not to work and provide her with full time care ourselves.  We discussed trying full time help in our home, but that did not solve the evening issue that was impacting us.  Although Scott struggled (felt guilty) with the decision that Belle needed full time care outside our home, he agreed without the availability of day care, it was the correct choice.  We visited the three facilities I had identified as appropriate for Belle’s care and reviewed her financial position in depth.  Whichever facility was selected, the price tag would not be inexpensive.

Each visit was difficult, and although I had initially not been pleased with stretching the visits out over a longer period, it turns out to be better to do so, emotionally speaking.  Each facility offered what was needed.  And each facility was full of suffers like Belle at different levels of decline.  The time in between each visit allowed us some time to recoup, take a deep breathe, and discuss the pros and cons of the facility in a reasonable way, trying our best to not be emotional.

We decided that Belle’s needs would best be suited by the style and care given at the facility that strictly catered to Alzheimer’s suffers.  Additionally, it was practically across the street from my employer, and although quite a distance from our current home, it would be convenient to our home under construction. We contacted each of Scott’s siblings and discussed the situation in depth.  All agreed it was time for this change.  The normal waiting list was six months, and since the daycare would be closed before then, we were uncertain how we would manage until an opening became available.    We had Belle evaluated by her doctor.  The assessment staff of the facility met with Belle and performed their specialized assessment of her to determine her function level as they related to what assistance they offered.   With the decision made, some of the burden was lifted, but none of the guilt.

Chapter Twenty Seven-Alzheimers Story Wednesday, Jan 6 2010 

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

Chapter Twenty- Seven

As Belle declined, Scott and I disagreed more and more about how her lack of abilities were impacting us and in some cases what her abilities were.  I started to keep a journal of my complaints, because each time I tried to talk about my feelings with Scott, he would shut down emotionally. He was doing all he could do to keep the situation afloat, and he needed me to be self sufficient.  Reading back through some of my comments at the time, I can freshly recall the frustration and isolation I felt.

An entry from January 2003:

S and I both took time off during the holidays and managed to eek out a few hours together without his mom.  We are struggling not to kill our relationship because we are caring for her.  For some couples this would not be so difficult, as they never talk anyway, but S and I have the kind of relationship that includes a lot of talk, and we cannot do it with her around all the time.  And the added complication is when we do have time to talk, we almost always turn to talking about her and where things are.  We disagree on her abilities and how to handle things regarding her.  Last Saturday night we had a big blow up about her.  I think the main disagreement was that he insists on including her in every conversation and activity even when it is obvious that she is not able to participate in the activity or follow the conversation.  It taxes her to try when this happens, and she gets worse.  When she says something that is wrong [Jim just called and is coming to pick her up as an example] he never corrects her.  So she builds more conversation on the wrong information and we go into lala land.  My experience is that you can gently correct her, and it will refocus her to something else, that she might get right.  If you let her continue into lala land the tales get bigger and bigger until they are outright lies.  And I mean lies.  She makes up some whoppers and they go on and on.  She does not understand that we know what she is saying is not true.  And when I say lie, I do not mean things like “Jim said”, it’s more like “When I climbed Mount Everest”.  Stories S has heard all his life and that I’ve heard for 26 years are suddenly different now and she is always the shining star that saved the day.  I know it is part of the disease, but that doesn’t mean I should have to sit and listen to it forever, paying rapt attention.  We did that in the beginning, but there are just not enough hours in the day.  Once again I am not advocating cutting her off or being mean about it, but gently leading her away from a subject she cannot handle truthfully.  She can have a 20 minute conversation out loud that never says anything and we cannot figure out what the seed beneath the layers is.  In the past, when she would start talking about something, if you listened closely, you could figure out what the common thread was that connects the disjointed sentences.  Now, the thread is gone and the disjointed sentences do not seem to relate to anything and of course she cannot tell you what she means.

She is having more wetting accidents and then takes the protective underwear off and hides them.  Then proceeds to go around with nothing on to protect from another accident.  Or she rips the lining out of the underwear out and flushes it.  Or pulls them down and then wets.    At least three times a week she is wetting the bed through the underwear.  Sometimes she tries to make the bed to hide the wet linens.

She is paranoid, thinking that people she sees are threats to her, saying things like ‘that Mexican kid (meaning my 10 year old niece) is going to hit her in the head and steal her purse.’  Blocking off doors with furniture, hiding hammers under the bed.

A list of other things?  Palming car keys and other small objects and hiding them, wiping her nose on clean towels as she tries to fold them, wiping her nose on other peoples dinner napkins then folding it and putting it back next to the plate, answering the TV remote thinking it is the telephone, hiding food in her clothes, closet and dresser drawers, screw driver in the freezer, full water glasses in the cabinets or freezer, moving her food all around the plate scraping the fork on the plate like fingernails on the chalk board,  eating tarter sauce, or salad dressings by itself  or spreading it on her dinner roll, always insisting that her blouse collar be turned up like it is freezing outside when it is summer….it’s the little things that drive you nuts.  You haven’t lived until you open the freezer and a glass of cold water dumps down the front of you………

Scott and I struggled under the weight of the responsibility for Belle’s physical and financial well being.    It became more difficult to include her in activities with my family due to fear she would say something inappropriate to my sister in law and my nieces, based on their dark skin color and Belle’s paranoia.  It became difficult to leave Belle alone in a room for any length of time, for a variety of reasons.  It was difficult to find family to sit with her.  It was just us.

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 Four-Alzheimers Story Wednesday, Dec 2 2009 

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

Chapter Twenty Four 

Belle’s day care attendance solved the day time issues that were created when she stayed home without assistance.  Susan was thrilled that she could come home to a house that was just as she left it.  The reasons that had created the need to lock up the garage (with the refrigerator in it), the hall bathroom and Susan’s bedroom not longer existed during a normal work day.  Objects no longer moved from one location to another or disappeared completely.  I was relieved that the need to race home when Belle could not be reached by phone or viewed online no longer existed. We shut down the living room camera and viewing website, as it was no longer needed.  We felt relieved and confident that Belle was safe during the day and that she was well taken care of at the day care facility.  With the exception of while she slept, Belle was rarely alone.

Belle adjusted well to the new routine of attending day care.  On the trip to the facility in the mornings, she often commented about heading off to work or how much work she had to do that day. When picked up in the afternoon, she might comment on how much she had accomplished at work that day.  She liked being ‘busy, busy, busy’. And the facility kept her busy with activities such as jewelry making, painting, and other arts and crafts projects.  She took naps if she was tired, and on pretty days, enjoyed short walks outside in the fenced in recreation area.  In the afternoons, it was common practice for all the attendees to sit in a circle and enjoy music or talk, with a care giver facilitating to ensure all that could join in did so. At times, it seemed that she was reluctant to leave at the end of the day.

Scott and I discussed how well things seemed to be going, and were relieved at Belle’s smooth adjustment to the new routine.  Then, with a large problem solved, another problem appeared.  Susan, who carried the majority of the responsibility for getting Belle to and from day care, had to maintain a more rigid daily schedule to drop Belle off in the mornings and pick her up in the afternoons than she was accustomed to maintaining.  Her life included more spur of the moment activities that she felt she could no longer engage in.  Susan began to ask Scott to pick Belle up in the afternoons, sometimes with notice, so we could plan for it, and sometimes without notice, if a spur of the moment activity was available.  Scott and I stepped in as needed, but Susan resented having to ask for assistance.  Susan voiced her frustration with the situation and Scott agreed to be the responsible party on set days of the week, allowing Susan more latitude with her evenings.  On these days, Belle would normally stay with us through the evening.  Oftentimes Scott would call Susan and offer to pick Belle up one his non scheduled days.   If he wasn’t able to pick Belle up on his scheduled days or was delayed for any reason, I became the responsible party.

Although at this point Belle seemed to have no problem recalling Scott and Susan and how they were related to her, I was one of the first of the family to be lost to Belle.  She seemed to know, most of the time, that she should know me, or that I was attached to Scott in some way, but often who I was and certainly my name was not recalled.  So, on days when I picked her up, I had to ensure I called her name when I entered the room and mentioned things that she recalled so that she would leave with me.  The most common method used to generate comfort for Belle so she would not resist leaving with me was to mention I was there to pick her up to take her to Scott.  She had no problem leaving with me if that was our destination.   My favorite way of ensuring she was comfortable leaving with me was to mention our favorite place to stop on the way home.  So often after calling her name, I would tell her we had a stop to make at the little local hamburger joint for a chocolate shake.  The care givers at the facility, who knew we often did this, would ooohhh and ahhhh and Belle would clap her hands. Then we’d order chocolate shakes at the drive thru and enjoy the cold drink on the way home.    She always enjoyed my bribe, sipping thru the straw until the empty cup noises echoed in the car.

Susan’s discontent and frustration with her responsibility level regarding Belle was on the rise.  Her distress was more than just the limits placed on her for dropping off and picking up Belle on a daily basis and her frustrations began to break through in the manner and tone she used with Belle when Belle was confused, failed to follow directions or failed to recall.  As Susan became increasingly abrupt with Belle, Belle was less likely to cooperate and the situation would often lead to an increased level of frustration for both of them.  Scott was increasingly distressed at the verbally rough treatment Belle received from Susan and began voicing his concerns strongly to me and in passing to Susan.  The caregivers at daycare mentioned on several occasions that Susan could be gruff with Belle when it did not seem warranted. Scott also noticed occasions when Susan was physically demanding when trying to force Belle into shower or when trying to get Belle to obey an instruction.  He began to worry that Susan could not handle the situation and that Belle was declining at a faster rate due to the treatment she received. Scott spoke with Susan a time or two about his concerns, and things would improve for a time, but would slide back quickly to displays of frustration.  This concern was a major issue for Scott and we discussed it frequently.  He began to consider terminating the living arrangements currently in place for the house next door.

As it had generally been our practice to disagree on most topics concerning Susan, I was concerned when he began repeated discussion of the situation next door and his unhappiness about the treatment Belle was receiving.  Scott and Susan had always been close and regardless of the situation, Scott typically protected and defended Susan, even when, in my view, the protection and defense was not warranted.   My relationship with Susan had its rough spots and I could be harsh in my assessments of her and her lifestyle.   Therefore Scott and I rarely discussed Susan or her activities because it was almost certain we would disagree.   When Scott started discussing with me his concerns regarding Susan and her care of Belle, I tried to provide reasonable, balanced assessment of the situation, although I began to fear the arrangement might be coming apart.    Based on my conversations with Scott, it was my perception that Susan felt taken advantage of, even through she had suggested she could care for her mother and had signed on to the task of her own accord.  Scott felt Susan was taking her frustrations out on Belle, and that the overall atmosphere in the house was not advantageous for Belle.

Scott and Susan began to disagree on how Belle should be handled and on the financial arrangements regarding ownership of the house.  Scott understood her frustration, but felt that Belle did not deserve nor was it good for her to deal with undesired treatment. In an attempt to provide relief for Susan in the hope of improving her treatment of Belle, Scott began stepping in, taking on more physical responsibility for Belle on evenings and weekends.   Although Belle spent quite a bit of time with us already, her time with us increased to a new level. Our spare bedroom became her home away from home as she stayed with us for longer and longer periods of time, even if Susan was home. In addition to increased evening and weekend stays, Belle lived with us whenever Susan and her husband vacationed.  Susan worked as a travel agent, which afforded her the opportunity to travel cheaply and often.  Susan and her husband took many short hop weekend trips and at least two overseas trips during the time they lived next door.

The beginning of the end of the arrangement for the care of Belle next door occurred in November 2001.  Our area experienced 14 inches of rain in 3 hours and many of the local streets flooded along with many homes.  Our home had some rain run off water issues in the past and Scott made it home from work in time to trench around our house and prevent the run off water from entering our home.  Belle’s house had not, to our knowledge, experienced any issues of this nature, so no effort was made to check on it until Scott had completed the trenching for our home.  Once he checked on Belle’s house, it was determined that the garage and living room contained water.  Susan’s husband arrived home and together they placed the furniture up on blocks of wood and canned goods to keep the furniture out of the water.  Then they went outside and began trenching around the house to keep more advancing water from gaining entry into the house.

The growing disagreement pertaining to who had ownership rights to the house, including the rights to redecorate the living areas of the home or repair the house in general blazed after the flood.  Susan and her husband had always wanted to make the house their own, while we had resisted any changes, trying to keep what was familiar to Belle in place.  Susan wanted to move into the master bedroom and wanted a bigger say in how the home was decorated.  However, as in the past when she had not had the funds for essential repairs to replace the air conditioning unit or the water heater when they had needed replacement (and which had fallen financially on Belle), Susan lacked the funds for any repairs, such as replacing the carpeting damaged in the flood.  Scott, acting on Belle’s behalf, felt that accepting financial responsibility for the house would provide the decorating rights and control of the house, and it appeared that Susan and her husband were not able and/or willing to accept full responsibility for the house if money was involved.   In the aftermath of the flood, to keep the peace, Scott relented a bit and Susan took control of the decorating of the main living areas of the house.  He remained steadfast on the master bedroom issue and did not allow Belle to be moved into another bedroom.   Some of the living area changes made did not sit well with Scott because they upset Belle.  However, he did not intervene, allowing Susan to redo the living areas of the house as she pleased.  But the shaky underpinning of the house arrangements along with the core of Susan’ frustration regarding her responsibilities with Belle, created a emotional slide that eventually led to the demise of the living arrangements created for the protection of Belle.

In March 2002, four months after the flood, Susan announced without preamble that she and her husband had purchased a home to be built in a new subdivision and would be moving out when it was finished.  She estimated this would occur in July.   She claimed they would stay involved with Belle, and that a room at the new house would be available for Belle to visit, but that she would no longer be living under her mom’s roof and be involved in the daily care of her mother.  Scott and Susan briefly discussed a shared living arrangement for Belle, with the possibility of Belle spending half her time with us and half with Susan but nothing ever came from the discussions, which was not surprising to us.  Scott and I were taken aback at the events, mainly because there had been no mention of the possibility of moving and Susan was supposed to be working toward purchasing the house she and her husband shared with Belle.  Although the suddenness was a surprise, we had felt that something was up over the previous month or two and now we knew what it was.  Scott had been increasingly morose about how things next door had been progressing, and we had discussed on several occasions removing Belle from their care.   So, with the July timeline in mind, Scott and I began discussing alternatives regarding Belle’s care.   The initial plan was to move her in with us full time, and continue her day time day care.  We were in the process of a kitchen remodel that should be complete by July and we should be ready to take on Belle full time in our home.

Less than a month later, Susan and her husband sublet a furnished apartment and moved out of Belle’s house.  Susan told us of their decision and move, and that they would no longer be caring for Belle when we saw them loading their belonging to move them into storage.  As she loaded her belongs, Susan commented that taking care of Belle “wasn’t what she had planned for her life”.  Once again taken aback by the suddenness of the event, we reacted by immediately moving Belle into our spare bedroom.  So, now, in additional full time financial responsibility for Belle, we assumed full time physical care of her.

Chapter Twenty Three-Alzheimers Story Wednesday, Dec 2 2009 

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

Chapter Twenty Three

The statistics I’ve heard say that the average Alzheimer’s patient lives for ten years after diagnosis.  Although we felt Belle’s confirmation was late due to her original doctor failing to run even the simplest of tests, we were still 4 years into a 10 year situation.  Belle’s financial situation was strained and we were concerned about having enough money to pay for her care when we could no longer manage her personally.  So, when we decided that the decline in her abilities and her increasing need of assistance with personal function had reached the point that she could not be home all day without assistance, we started researching Alzheimer’s oriented resources for daytime assistance.  We needed someone who could spend time with Belle during the day, ensure she ate, and assist her in the bathroom in case of an accident, as Belle’s bladder control issue had advanced to the point of full time protection.

We were disappointed to find that there were very little affordable or other types of assistance available.  The church Belle had been attending since the 1970’s as a charter member offered no programs to assist elderly members in this manner.  Other kinds of elderly assistance were not designed for individuals with Alzheimer’s and the cost made it prohibitive for daily assistance anyway.  We finally located an elderly assistance program with an Alzheimer’s focus we felt she could afford a few days a week.  It was designed with a situation like Belle’s in mind and was a small local business.  The paid helper could arrive mid morning, make sure Belle was up, make sure she ate her lunch, assist in the bathroom if needed and interact with her.  We decided to give this a try.

Belle became upset each time we mentioned she might need personal assistance.  We had tried to discuss this situation with her previously, outlining some of the issues and gently mentioning the support provided by those all around her but she was completely against personal assistance and the discussion itself would cause a bad day.  She knew she wasn’t all she used to be and would repeatedly state she did not want to be a burden.  From her point of view it seemed that receiving outside assistance caused her think of herself as a burden.  The level of support being provided to her from family was beyond her ability to understand. But to minimize her fear and therefore the impact on her function, we decided that we would get the helper in the house by saying the helper was there to help clean the house.  This little fabrication worked.  Belle agreed we could give this idea a try because she was having difficulty keeping up with all that needed to be done.  (Not that it needs to be said, but Belle wasn’t doing any housework during the day.) Scott and Susan made sure they were at the house for the first time the helper, a very nice older Hispanic lady, was to stay. The first few visits went smoothly, with Belle enjoying the company and assistance.  We were cautiously optimistic about the future success of our plan.

Although the helper was able make sure Belle ate her lunch and Belle seemed to enjoy the additional interaction, as the visits continued, Belle was upset each time the helper sat down or wasn’t cleaning something.  Belle did not trust her and would complain to Scott she was sure the helper was the reason things around the house were missing.  As Belle’s distrust of the helper increased, Belle started being uncooperative, refusing to eat lunch, or refusing assistance when a bladder control incident occurred. It was soon apparent that this opportunity we had hoped would be the answer to the problem of daytime care for Belle was not going to work out.  We had begun to discuss what our next step would be when the helper suffered a major illness and was no longer able to assist.  After much discussion, it was decided we would not attempt to introduce another helper into the situation and that we would look for another alternative for daytime assistance. We had used the service for about three months.

Another elderly assistance program, an adult day care that was funded by the state, had an opening on the north side of town.  Susan had located this program prior to attempting the in home assistance and was wholly in favor of Belle’s attendance. Scott and Susan went to visit it, reviewed the cost as it was not free for Belle and decided to give it a try. Although most of the people attending the facility were not full time, Belle would be there each day while we were all at work.  Susan worked downtown and the facility was not too far from her employment.  She would drop her off and pick her up each day. Belle started attending daily adult day care in the summer of 2001.

Shades of the Past-OMG Monday, Nov 30 2009 

My parents were here for Tday.  Both did several things that semi proved to Scott that my concerns over the recent changes in behaviors are not completely unfounded.  We’ve been down this path before with his Mom and Aunt, and to some degree with my Gma and even in full denial mode, its hard to let it in.  I just want to scream “not again”. Please.  I’ve done my time. Am I really going to spend my whole adult life doing this?

Dad talked the entire time they were there.  All the stories were old, childhood, early marriage, when I was a kid etc.  All the stories we all know by heart, word for word. Except this time, parts of each stories were missing.  He’d start in the middle, so if one did not know the rest of the story one would have been lost.  We weren’t, but that’s not the point.  No one else could get a word in to have any conversation because he wouldn’t/couldn’t stop talking.  It’s always been bad that way, but this was the worst yet.  It was really unpleasant and the evening did not last very long because of it

And Mom.  I think this part was what got to me the most.  On two separate occasions Mom couldn’t carry out simple requests asked of her.  It was dejavu.  Like watching my mother in law all over again.  Keep in mind, if you haven’t read any of the  story I’ve been posting, I spent  quite a bit of time in close contact with someone suffering from dementia.  I know what the dazed confused body movements and facial expressions look like.  I saw it daily for over 12 years. And with both situations on Tday, I felt fear. And dread.

The first: Mom had been asking how she could help out.  So Scott gave her a job.  Scott asked Mom to fold the napkins for the table settings.  She asked how he would like them folded.  He said it did not matter.  She took the stack of napkins, moved them in front of her at the table, then moved them to the lazy susan we have in the middle of the table.  Then straightened them into a nice stack.  Then moved them again, this time to the counter. They where never folded.  They traveled from surface to surface repeatedly, but never managed to ever get folded. 

The second.  There was a basket of towels that needed to be moved out of the kitchen and instead of putting them up (after watching the napkins move around) I just asked her to move the basket into the red room.  (We have two extra bedrooms, one we call the blue room, one the red room.  They are just off the kitchen with the bathroom in between them, in view of the kitchen.) Mom was happy to help, picked up the basket and headed off in the correct direction.  She then headed straight into the bathroom, which is past the turn to the bedrooms and stood in the bathroom holding the basket.  I could see her from the kitchen, standing there, still, trying to think it through.  She came back out of the bathroom, very slowly, exaggerated slowness, looked around, again very slowly,  and then went back in to the bathroom (again past the hall to the red room), hesitated and slowly placed the basket of towels in the bathtub.  I watched all this while I peeled potatoes.  I waited to see if she’d come back out and ask about the red room, or say something to let me know she couldnt’ find it, maybe explain why she put the basket of towels in the bathtub and not the red room as instructed.  She did not. I did not point out the misplacement.  I did just do as we used to do with my mother in law, which was move it once she was not looking.    I watched Mom come out of the bathroom and mix in with the others.  She didn’t mention the basket. 

I finished my kitchen task and headed toward the bathroom to move the towels.  She followed and quietly asked, where did you want the towels to go?  I opened the door to the red room (it’s about three steps from the bathroom door)  and moved the towels into the room.  She murmured she couldn’t recall.

Are either of these things the end of the world?  Nope.  Do either of them mean a thing in the big scheme of things.  Probably not.  Have I seen this type of thing before?  Yes, I have.  Am I  worried about it?  Yes, I am.

I told Scott I was in for each step of his Mom’s trek and I cannot do this one without his total buy in.  When I tell him I need ‘x’, I need it.   He said ok.  Do I need to start repeating to myself, it’s not their/her fault?  Maybe.

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.

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