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

Chapter Thirteen

How does one treat an adult that is regressing?  There are no good answers.  We wanted to allow Belle to do what she could as long as she could do it.  When is it appropriate to interfere and not allow an adult do something they think they can do?  And how much should we give up to let this occur?  This balancing act caused us much discomfort and in some cases, disagreement.  The systems we developed to allow her to continue to live on her own were negatively impacting our daily lives. 

When a house behind Belle’s became available for sale we seriously discussed selling our home and buying it.  The home would have placed us in a financial tight space, and was smaller than the home we occupied, but was so close to Belle that living there might relieve some of the other pressures we were experiencing. After much deliberation, we decided the home did not meet our needs.  But in the process of reviewing the situation and how we might allow Belle to keep living in her home with our assistance, we began understand that it was a matter of time before it was not realistic to believe she could stay on her own as her abilities declined.  We began to explore and consider other possibilities.

In late 1997, we moved from our home of 14 years.  Our new home was about the same distance from Belle, but larger than our previous home.  Deacon was a teenager in high school and Cooper was moving out on his own.  We bought the home with the idea that at some time in the future that, after Deacon left for college, Belle might be living with us.  The rooms were large enough to accommodate Belle upstairs, with a bedroom and possible sitting room for company or visitors.

Although Belle would not be making this move with us right now, our move had unintended impact for her and provided a surprise for us.  Soon after we moved, Scott decided we needed a storage building in our backyard and solicited his brother Chuck to help him build it.  They started the project on a weekday and on a morning break called Belle.  They invited her to keep them company while they worked.  Belle, being a builder’s wife, was used to being the gofer projects, and I suspect, that when she agreed to drive over, she was looking forward to being useful to them in this capacity.  She told them she’d be right over.

The drive, even with traffic, should not have taken more than 15 minutes.  Even allowing time for her to get dressed, she should have arrived within a short time frame.  When an hour passed and Belle had not arrived, Scott and Chuck began to be concerned.  When the time elapsed into an hour and a half, Scott called her house.  There was no answer.   Over the next half hour, he called several times, again with no answer.   He was in the process of getting ready to drive around and track her potential route between her home and ours to find her when she finally pulled up to the curb in front our house.

Although physically safe, she was emotionally upset. Belle had been driving to our previous home for many years without assistance.   This time, she had started off driving to our new home and had gotten lost. She confused one major road with another and had driven well outside the city.  When she finally realized that the area she had driven to, which was miles south of her destination, did not look familiar, she started trying to back track her moves.  While unable to backtrack partially to the wrong turn that caused the problem, she was able to backtrack completely all the way back to her home.  She then set out again, shaken but determined.  This attempt was successful and she arrived at our house, late but safe. 

Belle had driven on her own to our home several times during the preceding months.  We had not given this activity any further thought.  However, after this incident, inspection of her glove box revealed written instructional directions to our home and several other destinations common for her.  We had not been aware Belle was using written instructions to drive to any type of common destination or at all for that matter.   This situation became frightening and reassuring.  Belle had been thorough enough to know she needed help in the form of instructions and had proactively created her own help aid.  Additionally, although she had been unable to backtrack and restart from a point other than her original starting point, she had been able to regroup, restart and arrive at her desired destination safely.

Although Scott had driven with her on more than one occasion observing her driving skills, his actions turned out to be insufficient to determine her abilities.  We speculated that when they were together, Scott must be assisting her without really realizing it.  If she hesitated, he filled in the information.   But now it seemed obvious she was relaying on written instructions for simple destinations.  Scott and I discussed this situation at length.  Should we insist she not drive?  Could we insist she not drive?  We did not want to deprive her of her ability to function on her own.  Taking away her right to drive might meet with resistance from her and place more of a burden on us.  She was driving herself to church and the grocery store often using her written instructions.  If we eliminated her driving, would we have to then take on the responsibility?  We debated this topic for some time and decided to let things ride a little longer.  In an ironic twist, Scott’s sister and husband moved into our previous home and Belle could continue to drive to visit her without written instructions.

Not too long after this incident, Scott injured his back incorrectly lifting some potting soil and for a month he underwent treatments to try to correct the problem.  This development meant I filled in for him more with Belle. Belle was very upset by his absence and his discomfort. She repeatedly asked how he was and if he was in pain.  After month of worsening symptoms, surgery became necessary.  Everything with the surgery went fine, but Belle remained impacted and unable to recall that he was okay once the surgery was completed, fretting and wringing her hands.  Scott came home from the hospital on a Saturday and could get around some on his own that same day.  Although I planned to stay home with him a day or two to assist, he was doing well enough that we decided I would go to work and just take a long lunch break to check on him.  I was in the middle of a project at work that others were depending on to complete their portions and although I had asked for and received the days off to stay with him, it would be best if I could go on in.  The surgery had been sudden and the days off would impact and delay the project deadline.  Then Scott suggested that it might be a good idea to let Belle help.  He did not need assistance getting up or moving around, although he would be only doing that to go the bathroom.  She could fetch items he needed if he choose not to move. She would then see for herself that he was fine.  He hoped she would feel reassured he was okay and that she would also feel like she was contributing to his recovery.  In other words, that she would feel useful.   So we settled on a plan and Belle was, as we thought she would be, glad to be useful. 

Scott called me shortly after noon on that Monday.  He was exhausted and in pain.  Belle was waking him up repeatedly to ask if he needed anything.  She could not follow through with a simple task request, like fetching a glass of water. She’d head off to get it, only to come back without anything and ask if he needed anything.  The pitcher of water I had prepared and left next to the bed for him was missing as was his pain medication and it was time for his next dose.  He did not have the energy to try to find the missing medication and Belle did not know where it was. She insisted on sitting with him on the bed and would hold his hand while watching him closely.   He asked me to come home and I did. 

After some serious searching, I found the water pitcher, still full of water, in the freezer, but Scott’s pain medication was nowhere to be found.  I searched the house, her purse, the freezer and any nook and cranny I could think of (inside and out) but did not locate it.  I called the doctors office and explained why we needed another pain prescription of the strong narcotic.  In the back of my mind I was sure they wouldn’t believe me, as the drug could have been easily sold on the street.  But I did not want Scott to go without, so I explained the situation in detail.  The office nurse was very doubtful and I ended up speaking with the doctor, again explaining the situation in detail.  I was grateful we had, during a previous appointment with his doctor, mentioned that Scott provided assistance to his mother due to her illness.   I was glad when he agreed to a limited refill, and explained what symptoms to look for in case she had actually taken the mediation.  I was doubtful she had, but checked her for the symptoms he listed.   Belle did not display any of the symptoms the doctor had mentioned.  I spent the afternoon reassuring Belle that Scott was okay, and now that I was home, she was free to get home to her projects.   I followed her home, to ensure she arrived there safely.  The next day, I went to work, and came home for an extended lunch break as had been our original plan and Scott’s recovery progressed.  I guessed the bottle of pain medication was hidden somewhere in the house and it would eventually turn up.  However, we have never located Scott’s lost medication.

For several years before and after his surgery, Scott traveled to Corpus Christi regularly for a day trip to visit an aging relative.  Belle occasionally accompanied him on this trip. The next time this trip was scheduled after his recovery, Scott decided to use Belle’s car for the trip and have her drive some of the distance so he could observe her.  The first leg of the trip went fine with Belle driving at highway speeds on a dividend highway.  When the first major city was encountered a change in highways was required.   As sometimes happens in big city traffic the overall speed of the traffic should slow down, but instead speeds up.  Belle seemed nervous, but was moving along with traffic when the exit for the appropriate highway began to approach.  The traffic and exit seemed to make Belle nervous and the more agitated she became the faster she drove.  The car exited the highway at a higher than recommended speed, and Belle did not seem to understand how dangerous the situation had become.  They continued through the traffic merge onto the appropriate highway and Scott guided her through verbal instruction to the next possible place to pull safely over.  He drove the rest of the trip.  His overview of the situation was that the roads were unfamiliar and although he was guiding her turns, she did not recall the instructions.  The instead of slowing down if she was unsure, her speed increased, which was an inappropriate reaction. 

Although inappropriate behavior can happen with many types of circumstance, losing the ability to make a judgment call and therefore acting inappropriately is an ability that is lost when other functionality is lost.  Belle was losing the ability to determine the appropriate speed of the car, the ability to determine junk mail from real mail, the ability to recall simple events (like what she for lunch), and the ability to appropriately judge how to protect important belongings.  So, in addition to losing her memory, she was losing the ability to reason.

We did not tell Belle she couldn’t drive anymore, although I believe if we had she would have handed over the keys.  We just arranged to make sure she had no reason to drive.  We took over shopping or taking her shopping, and drove her to all her appointments.  A friend from Sunday school dropped by each Sunday and picked her up for church. The idea that the car was still available to her, even though Scott had spirited away her keys without her noticing, and that she could hop in it and go to the store or church anytime she wished lasted for years, long after the car was sold.  She remembered driving and when asked what she had done that day, she might tell the person posing the questions that she’d being shopping or had driven somewhere, when in fact she had not.  The past she remembered often seemed like that day.