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

Chapter Twenty Three

The statistics I’ve heard say that the average Alzheimer’s patient lives for ten years after diagnosis.  Although we felt Belle’s confirmation was late due to her original doctor failing to run even the simplest of tests, we were still 4 years into a 10 year situation.  Belle’s financial situation was strained and we were concerned about having enough money to pay for her care when we could no longer manage her personally.  So, when we decided that the decline in her abilities and her increasing need of assistance with personal function had reached the point that she could not be home all day without assistance, we started researching Alzheimer’s oriented resources for daytime assistance.  We needed someone who could spend time with Belle during the day, ensure she ate, and assist her in the bathroom in case of an accident, as Belle’s bladder control issue had advanced to the point of full time protection.

We were disappointed to find that there were very little affordable or other types of assistance available.  The church Belle had been attending since the 1970’s as a charter member offered no programs to assist elderly members in this manner.  Other kinds of elderly assistance were not designed for individuals with Alzheimer’s and the cost made it prohibitive for daily assistance anyway.  We finally located an elderly assistance program with an Alzheimer’s focus we felt she could afford a few days a week.  It was designed with a situation like Belle’s in mind and was a small local business.  The paid helper could arrive mid morning, make sure Belle was up, make sure she ate her lunch, assist in the bathroom if needed and interact with her.  We decided to give this a try.

Belle became upset each time we mentioned she might need personal assistance.  We had tried to discuss this situation with her previously, outlining some of the issues and gently mentioning the support provided by those all around her but she was completely against personal assistance and the discussion itself would cause a bad day.  She knew she wasn’t all she used to be and would repeatedly state she did not want to be a burden.  From her point of view it seemed that receiving outside assistance caused her think of herself as a burden.  The level of support being provided to her from family was beyond her ability to understand. But to minimize her fear and therefore the impact on her function, we decided that we would get the helper in the house by saying the helper was there to help clean the house.  This little fabrication worked.  Belle agreed we could give this idea a try because she was having difficulty keeping up with all that needed to be done.  (Not that it needs to be said, but Belle wasn’t doing any housework during the day.) Scott and Susan made sure they were at the house for the first time the helper, a very nice older Hispanic lady, was to stay. The first few visits went smoothly, with Belle enjoying the company and assistance.  We were cautiously optimistic about the future success of our plan.

Although the helper was able make sure Belle ate her lunch and Belle seemed to enjoy the additional interaction, as the visits continued, Belle was upset each time the helper sat down or wasn’t cleaning something.  Belle did not trust her and would complain to Scott she was sure the helper was the reason things around the house were missing.  As Belle’s distrust of the helper increased, Belle started being uncooperative, refusing to eat lunch, or refusing assistance when a bladder control incident occurred. It was soon apparent that this opportunity we had hoped would be the answer to the problem of daytime care for Belle was not going to work out.  We had begun to discuss what our next step would be when the helper suffered a major illness and was no longer able to assist.  After much discussion, it was decided we would not attempt to introduce another helper into the situation and that we would look for another alternative for daytime assistance. We had used the service for about three months.

Another elderly assistance program, an adult day care that was funded by the state, had an opening on the north side of town.  Susan had located this program prior to attempting the in home assistance and was wholly in favor of Belle’s attendance. Scott and Susan went to visit it, reviewed the cost as it was not free for Belle and decided to give it a try. Although most of the people attending the facility were not full time, Belle would be there each day while we were all at work.  Susan worked downtown and the facility was not too far from her employment.  She would drop her off and pick her up each day. Belle started attending daily adult day care in the summer of 2001.