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.