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

Chapter Fifteen

Belle needed more help than could be provided from a distance, although I have to admit, it did not feel like a distance.  Belle had become the premier focus of all of our activities.  Every action we took included consideration for how Belle was impacted.  Because she needed assistance with everything, we had to consider her when making any plans of our own.  In addition to not eating or eating improperly (cooking was out of the question), she was having difficulty with consistent medication intake, and was beginning to have episodes of lack of bladder control.  My visits, in addition to the emergency calls when she could not be reached, now extended to lunch visits to check on her to ensure she was eating.  If the evening was not spent at Belle’s, one of us stopped by on the way home to check on her.  We were in phone contact with her several times a day. We were coordinating and attending doctor, ophthalmologist and hair visits.  We were shopping for her or taking her shopping, grocery and other. Scott was handling payment of all her bills.  I monitored her checking and other deposit accounts. We were assisting her with her hygiene, as she had begun to not like to bathe.  We were concerned what would happen if she left the house during the day or attempted to drive, even through she hadn’t driven in some time. We had purchased a medical alert bracelet with her condition and our phone numbers listed on it.  This was fine most of the time, but she could work it off her wrist and would occasionally remove and hide it.  She was having difficulty using the phone, even with speed dial numbers programmed.

All of our activities to support Belle were time consuming and at times exhausting.  It was not possible to drop by for a few minutes and do a quick check.  Belle thought and acted slowly.   When checking on her, we had to allow her the time it took to absorb the question we asked, finish the task we were assisting her complete or on some days, just to interact.  We would tag team each other to get tasks completed.  Sometimes I would start the task with her and Scott would complete it.  Sometimes in the afternoon, Deacon would assist us. My mother would stop by for lunch from time to time, allowing Belle a chance for additional outside contact and us a chance to hear someone else’s view of her abilities.

To communicate in Belle’s presence without her understanding, we started speaking to each other with encrypted words or phrases or with prolonged eye contact, so we could speed along the situation without letting her know we were doing so.   A prolonged look from one of us usually meant the other should step up and take over.   We began to realize she could not live on her own much longer without some serious help. We briefly discussed assisted living for Belle, but her financial position did not offer the opportunity to place her in assisted living this soon into her illness. We also thought Belle would be resistant to the idea, as she still believed she was doing just fine ‘on her own’.  We began to discuss the possibility that we might have to move her in with us. I dreaded this possibility.

Finally, we thought we had found a solution.  In the fall of 1998, Susan did not renew her lease for our previous home, as her husband was working outside town and commuting home on weekends.  So, it was discussed that Susan might move in with Belle and be readily available to watch over and assist her.  Since Belle insisted she did not need assistance and did not want to burden anyone with that task, we stated she was helping Susan out financially, as her husband maintained a residence outside the city and this way they would only pay rent on one home versus two.  Belle liked the idea being able to help out. Susan would assist with the bill payment and actually be responsible for half of the home expenses.  Since she would be there to watch over and assist Belle, it seemed like a win win situation.  Belle would have someone with her at night and be able to more closely monitor medication intake and personal hygiene. So, a deal was stuck and the move in completed.  However, even with the insertion of Susan and her husband into the living arrangements, Scott and I remained intimately involved in Belle’s care.

We also had another issue approaching and arrangements needed to be completed.   Up to the point that Susan and her husband moved in, we could not travel for business or pleasure without ensuring one of Scott’s siblings was available to physically check on Belle in our absence.   Most of the time, she would travel with us so Scott wouldn’t have to worry that something would go wrong while he was away.  Even if we did manage to get away, Scott would keep his routine of calling her to remind her about her mediation intake.

But, in February of 1999, Susan, her husband, Scott and I were planning a trip to England and France together.  Belle could not be left alone for the 2 weeks we would be gone and Chuck and his family, while local, were not in a position to assist her at the level she required.  After much discussion, it was decided Belle might enjoy an extended stay with Larry and Emma in Wyoming.  Arrangements were made, and a plan set into action. Each year for Christmas, Chuck and his family went skiing in Colorado with his in-laws.  During December 1998, Belle accompanied them on their trip to Colorado.  Larry picked up Belle in Colorado and completed the final leg of the trip to his home.  Belle stayed with Larry and Emma at their home until spring break 1999.

We were accustomed to the various behaviors that Belle exhibited and throughout the changes in her behavior we had kept the siblings up to date.  Knowing Belle had memory and functioning disabilities is one thing and living with them for several months is another.  I do not recall many of the specifics of her stay with Larry and Emma (I was taking a mental vacation from responsibility I think), but I do recall Larry and Emma mentioning that they were surprised at the seemingly changing nature of her abilities, her propensity to pack to leave repeatedly, and that things tended to move around and disappear. They too began to withhold information regarding events and appointments from her because she would fret and become agitated if told too far in advance.  During her stay with Larry and Emma, they developed various methods of dealing with the issues as they arose but they were surprised at the level of her decline.