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.

Weddings! Expensive! Sunday, Jan 31 2010 

OMG!  I cannot believe how expensive anything labeled ‘wedding’ is!  Doesn’t matter if is ordinary or not.  If it is attached to a wedding or labeled ’wedding’, the cost goes up.  Period.

We are helping plan a wedding.  Or should I say we are planning a wedding and making it look like we aren’t making all the decisions.  My spouse (remember  S?) is good at this type of thing, organization, and has basically taken over being the wedding planner.  I am good at colors and such.  And the fact the wedding will be at our house….that’s a different piece of the story….but also part of the reason we are so involved.

We don’t have any daughters, but figured at some point in our lives we would be paying for a rehearsal dinner.  And in a more traditional society, that might still be the case.  But tradition is out of the window, and that’s okay. S and I got married at a JP, no big or small wedding for us, and we’ve gotten along all these years just fine.  And it appears the days of a small reception in the church rec room with nuts, mints and punch are gone as well.  Nowadays, if everyone isn’t completely stressed out and broke by the time the wedding day arrives, then something has gone wrong it seems.  Our plan is to remain liquid, as unstressed as possible and still have a nice small, pretty wedding that provides the essentials of wedding held to today’s standards without the cost.  Is that possible?  It better be.

Like we do with almost everything else, we say we will ‘hire it out’ and then price it to do just that and decide we can handle it better and less expensively ourselves.  And then we dive in and get’r done.  S starts making lists. He’s a good list maker.  At least this time, he is checking things off the lists he’s made.

The house is designed to open(double doors) from the living and dining room onto the back porch, but even then it is not big enough to hold all the planned quests inside, so the ceremony and reception will be in the backyard and overflow into the house.    The yard is shaded and fenced, but after the recent drought needs some replanting and such, which we are now planning.  (Too cold right now) We want to have as much blooming as possible.  The rest of the blooming plants can be possible by potted plants on the fences and just sitting around.  The tables and chairs have been reserved.  We decided to include a few higher pub style tables for standing at for those that like to mill around.  The tablecloths have been arrived.  I thought it would be a nice touch to hang some coordinating curtains on the porch, and have ordered some.  I am looking for some ribbon to match the colors now for tie backs and other things one would use ribbon for.

S has handled cakes for weddings before and plans on baking for this one as well.  He is taking decorating classes now to up his game.  The cake part will taste good and he wants the decorations to look as good.  The food to be served is still under discussion, although we already have all the items needed to serve it.

Looking at invitations. Tons of options online.  This should be….  ummm ….    fun.

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.

Double Life? Really? Wednesday, Jan 6 2010 

It’s taken me some time to admit it (and I’m not sure writing it here counts since I’m not admitting to anyone that knows me) but I am leading a semi double life.  And the more I think about it, the more I wonder how many others out there are doing the same thing.

It started innocently enough I suppose.  I do one type of activity with one group of friends.  And other type of activity with another group of friends, which happens to include my husband.  And the two don’t mix.  And I don’t talk about the one group to the other, because I know there would be disapproval.  AND, here I am, at this age and I’ve  never told my parents about one set of friends, once again because of the disapproval factor.  I feel the need to point out it’s nothing sinister, I just know they wouldn’t approve, and I just don’t need/want that situation to cloud anything else.

So in a strange way, I have a “closeted’ life.  There is the life I show to others and the life I don’t.  The life I share with some, and the life I share with others.  The life I talk about, the life I don’t.

My double life.  You want details?  Do you do things you don’t share with others in your life?

I wonder.