Yesterday, I mentioned that fear is a common emotion expressed when people discuss dementia; particularly Alzheimer's.

We may define ourselves by what we do.  Think about how common it is for someone to say "I am a mom", "I am a systems analyst" or "I am a police officer."  While these statements are true on a surface level, it is a short-hand way of identifying ourselves by all of the experiences we have had or all of the training we have completed.  Really, this is not who we are; it is what we do.

To define who we are, some say we need to look at our values, our thoughts or our memories.  Maybe it is a combination of all these things in addition to our achievements and our actions.  For many of us, we have a hard time articulating who we are because we just know.  It becomes incredibly difficult to explain something so obvious and yet so layered and meaningful.

While we may not be able to express that which defines us, we are able to express what we fear about dementia.  The fear I hear expressed by others when the topic of dementia is brought up seems to come from a couple of common themes:

We are afraid of loosing ourselves.  If we cannot remember or continue to express our values, thoughts or memories, then how can we still be us?  If we cannot recall our achievements and if the disease removes our ability to act as we have before, are we still ourselves?  If I am not me, then who am I?  Am I just a shell of a person?  Is the spark that is me gone or diminished to such an extent that I am functionally dead?

We are afraid of loosing the ability to control our bodies.  As a brain progresses through the disease expressed by the dementia symptoms, the physical body is dramatically changed.  Hair and teeth may fall out.  Posture and muscle tone go slack.  Drooling starts or increases.  Physical frailty sets in.  The fear of loosing control over our bodies speaks to our desire to maintain dignity and control.  If I cannot tend to my personal hygiene, then am I still an adult?  Am I still a functional person?

We are afraid of suffering.  Dementia causes confusion and frustration.  To many, confusion and frustration are equated with suffering.  Physical pain in the dementia patient may be hard to detect because of impaired communication skills.  Untreated pain causes suffering and we fear being trapped in a painful body with no way to communicate a need for help.

We are afraid of being a burden.  At least in the U.S., we are often taught to be self-reliant and to not rely upon assistance from anyone; even family members or close friends.  We are taught to not impose ourselves on others with our needs and have difficulty accepting assistance even when it is freely offered.  We do not want to feel we are indebted to another with no way to repay that debt.

We are afraid of the length of the disease.  From the time of diagnosis, does the dementia patient have one year?  Three?  Five?  Ten?  We, unfortunately, do not know.  The diseases which cause dementia progress differently with each patient.  We have broad patterns; but nothing definitive.  We cannot say with any certainty, for example, that Lyn will be alive in 5 years.  We also cannot say how long Lyn will still be able to engage in a conversation no matter how stilted it is.

Of all of these fears, the one most strongly expressed to me is the first one; we are afraid of loosing ourselves.  I have heard several individuals, including a dear friend, clearly state "I would rather be dead than suffer a cognitive impairment."  When I heard these statements, I used to wonder if the speaker would even be aware of the changes.

Lyn has taught me that awareness is there.  She knows her brain used to not work backwards.  She knows her thoughts and actions used to be smoother and less frustrating.  Even Lyn is cognizant that her brain is changing and impacting her in ways she doesn't like.  I do not know how long she will have this awareness.  It is this awareness of the slips that I think we actually fear more than loosing what we define as ourselves.  The changes are hard enough.  Being aware of them and being powerless to stop them is the stuff of nightmares.

I wish I could allay all these fears.  I cannot.  I just try to not let it keep me from living with what I have today.


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