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

Chapter Eleven

One thing I have always been surprised at is how many people, including medical professionals, do not understand Alzheimer’s or how it impacts the sufferer or their families. (Just for the record, speaking louder doesn’t help the patient understand.)  It seems the general impression is that Alzheimer’s causes a person to lose their memory and that’s it.  The memory loss is defined as forgetting the names of things or people. While memory loss of this nature is a huge part of the picture, in reality, this disease is much meaner.  Over the years in dealing with Belle and the impact of her illness, I have come to describe the loss of memory and loss of abilities in a plain terms illustration.  I actually told Belle my theory once while she was still in her early stages and she agreed that it was very close to accurate for how her abilities were impacted. 

Picture a block of Swiss cheese sitting on a surface.  Now picture dropping little droplets of liquid onto the cheese from above.  Sometimes the liquid runs one way or the other; sometimes it drops through to a lower level through the holes.  Sometimes it pools in an unexpected place.  In this illustration, the abilities and memories of the person are the liquid and the cheese is the brain.  Sometimes the liquid drops on the top of the cheese and runs completely through it which means the person functions fine completely through the task or remembers an event correctly.  Sometimes the liquid misses the first level of the cheese and hits a lower level which means they cannot recall an important item or they may know step one and three of a task, but step two has been forgotten. Sometimes the liquid drops straight through the cheese without touching anything which means they’ve lost ability they once maintained or they recall the event but recall it incorrectly.  And all these drops happen on the same day, meaning that their abilities are at different levels at the same time.  The following day, the experiment is performed again and the liquid runs differently.  So on that next day, the abilities are different as well.  On that day, step 2 of the task forgotten previously is back or step one has joined it or is forgotten. 

As the disease progresses,   functionality and memory fluctuate. An Alzheimer’s patient may be able to perform a task one day and not the next, but regain the ability the day after that, at least temporarily.  Before my experience with Belle, I believed that once ability was lost, it was gone.  In later stages, that turned out to be true, but throughout the beginning and middle stages of this disease’s progression, I’ve determined that not to be the case.    Unfortunately, this fluctuation of memory and ability adds to the level of denial that exists in the patient and the caregivers.  I can recall numerous times discussing something Belle had forgotten one day and recalled the next, and using that as a sign that things were not getting worse or that the changes we were witnessing were temporary.  She was just having a bad day.

Although an Alzheimer’s patient may become child like in their reasoning or abilities or behave like a child, they are not a child.  A child’s normal progress is upward, improving, learning.  Once a child knows how to do a task or recall a fact, they normally retain it and build on it.  When an Alzheimer’s patient declines, their abilities reduce, but the descent is not even or fluid.  It is bumpy and uneven.  Additionally, the patient for us was Scott’s mother, a person of authority in his life.  Balancing the reduced abilities of the Alzheimer’s patient with the status of that person in one’s life is often difficult and frustrating.  The Alzheimer’s patient seldom understands how reduced their abilities have become and the caregiver must balance the physical needs of the patient against the emotional needs of the patient.  I believe the majority of the discord that occurs between a patient and a caregiver stems from this issue.  The patient doesn’t believe they need help or have significantly reduced abilities and may be insulted and/or angry that someone, anyone, much less their child, thinks there is a problem. The caregiver, oftentimes a child of the patient, tries to balance the physical needs and the feelings of the patient without, hopefully, insulting the patient.  The parent becomes the child and child becomes the parent as the disease invades their lives. The authority levels alter, but the patient rarely understands this change.  We were actually very lucky with Belle, as she, even with her abilities waning, generally maintained a good humor and spirit and was rarely angry at us or belligerent, with a few exceptions.