Before It's Too Late

In one of the lounges here at Vantage House, I frequently see a seated gentleman working on a jigsaw puzzle.  Years ago, a stroke confined him to a wheel chair and severely limited his speech.  When he has some parts of the picture filled in and he is looking for the pieces to complete the area he is working on, his puzzle seems to fit what’s going on in my head.  I remember conversations, but I can’t make a meaning from them.  I remember pieces of the day but I can’t make the pieces fit together to make a whole day.  I remember faces but I don’t know where they belong.  Rob mentions something from the past and I have no idea what part of our life he is talking about.

Many people appear to be uncomfortable with the mention of Alzheimer’s.  Even after Robbie and I accepted the illness in my life and were using the word “Alzheimer’s” regularly, our primary care doctor at the time would only refer to “memory loss.”  We changed internists about five years ago.  When we discussed my symptoms with him, his astute comment was, “I don’t think tests would tell us anything we don’t already know.”  We concur, although sometimes I do think I’d like to see one of those colored pictures they show of the brains of people with Alzheimer’s.  Some days I don’t find much color in the world outside my head; maybe there’s color inside.

A few months ago I had an evaluation at Copper Ridge, an Alzheimer facility affiliated with Johns Hopkins Medical Institutions.  The doctor there expressed the opinion that the progress of my illness has been relatively slow, which, he said, suggests that the future course may be protracted.  I don’t really know if that is good news or bad news.

I am aware that most members of the medical community recognize the impossibility of stating with certainty that a person has Alzheimer’s.  Dementia, the often used and more generalized term, is unpleasant for me.  “Alzheimer’s” has meaning, even if I don’t quite know what the meaning is.  It is an entity in my mind and, I believe, in the minds of most people.  “Dementia” has an unpleasant ring to it.  In my childhood, people talked about someone being “demented” when they were terribly stupid, unwittingly foolish, or mentally deranged.  I see it as being associated with any of the above, but essentially referring to someone who is “out of his mind” or behaving as if he were.  I’m not out of my mind, and I pray, God, I will not become so. 

I mention having Alzheimer’s quite readily to others.  When I do, they seem not to know how to respond.  Most people apparently picture Alzheimer’s patients sitting mute in a corner, not recognizing their family, and not communicating with anyone.  So they seek verification that I have it by asking, “How does your doctor know?  Have you seen a specialist?  Have you had testing done?”

How do I prove the presence of Alzheimer’s to these “doubters?”  I’m well aware that I look the same (unless I forgot to finish putting on my lipstick or make-up on both eyes) and sound the same (unless the conversation stretches beyond the shallow depths of my current information).  They would not see me as the same if they caught me on a day when emotions run rampant and take me to thoughts I don’t understand, responses I hate myself for, and behaviors I describe as “crazy.”  Why do people only envision the end stages of Alzheimer’s?  Are they not aware that the early stages may last for years?  But then, I often find myself caught up in my own picture of “the end stage.”

 By nature I’m a sociable person and rather talkative so I quite readily converse with people.  These interactions probably have not changed noticeably to others because my words are appropriate to the situation, my demeanor is correct, my emotional reactions are suitable to the content of our conversation.  I “perform” as needed even though I do not know what day it is, what name this person has, what relationship we may have, or why I’m here, or where I’m going.  Rob observes these interactions and marvels at my ability to respond so appropriately.  We are getting used to the comment, “You don’t have Alzheimer’s.”  It used to irritate me; now it amuses me. 

I’ve been reluctant to read material about Alzheimer’s that Rob gave me months ago.  I don’t look forward to reading about my brain disintegrating.  I picked it up one day and read about memory loss and loss of objects.  I soon learned that, “Nothing can be done to cure it.”  Why read on?  They can’t give me a time table, and I’ll learn the details as I go along.  I don’t want to read about it.  They’re not going to fix it.  I don’t want to hear about research.  Sometimes I feel like I want to know everything about Alzheimer’s, and then suddenly I don’t want to know anything more.  I already know too much; I live it.