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.
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