Last week the family of actor Bruce Willis announced he was stepping away from the career he loved due to health issues.  The 67 year old star of the “Die Hard” franchise and a plethora of other action films too numerous to list here, had been diagnosed with aphasia, a cognitive disorder that  affects a person’s ability to speak, read, and write—basically, to comprehend and communicate.

Aphasia afflicts approximately 1,000,000 people in the United States and is often caused by strokes or other triggers such as brain tumors or infections and severe blows to the head—but it can also stem from dementia or Alzheimer’s.  The disease is progressive, meaning eventually Willis will be left unable to communicate or to understand language in any form.  In other words, he will be locked inside a body that still functions but with no cognitive ability.

As with so many who suffer from such illnesses, Willis’s family, friends, and co-workers had begun to notice the changes years before the diagnosis.  Accommodations were made as he tried to continue acting . . . scripts were shortened . . . body doubles were used more frequently . . . and eventually directors began declining to work with him, not because of any hesitancy over his limitations but out of respect for the actor and a desire to protect his entertainment legacy.

Robin Williams’s family faced the same unknown for several years, but theirs came with a misdiagnosis, as is common with his illness.  Diffuse Lewy Body Dementia mimics other diseases such as Parkinson’s, a label erroneously attached to Williams’s condition in its early stages.  Lewy Body Dementia brings with it a whole list of symptoms including paranoia, hallucinations, confusion, and insomnia, all of which result in a blurring of the lines between fantasy and reality—and made it impossible for Williams to continue performing.  So great was the depression brought about by his illness and mental decline that he ultimately took his own life.  It was only in the results of his autopsy that the answers were found, because that is the only way to definitively diagnose Lewy Body Dementia—by autopsying the brain.

As with aphasia caused by dementia or Alzheimer’s, a diagnosis of Diffuse Lewy Body Dementia is a slowly evolving death sentence.  There are no cures.  There are no treatments.  And there is no hiding the effects.  Although the world was never privy to the private struggles of these two well-known actors, those closest to them witnessed their decline . . . and were left to wonder why.

For every celebrity who suffers from an illness that ravages their mind, there are millions of ordinary people who are equally afflicted—people whose names are not known to the world, but who still matter greatly to those who love them and are forced to watch as they slip away.  It is a truly helpless feeling to stand beside someone who was once vibrantly alive but now does not recognize your face or even respond to their own name.  And in the end the cause doesn’t really matter; the result is still the same.  They will die twice and nothing you can do will change that.  So while they can still recall their own histories and retell their stories, record those memories.  Ask all the questions and glean all the information you can.  Then someday, when they no longer know who they are, you can remind them—and yourself.

About the author:  Lisa Shackelford Thomas is a fourth generation member of a family that’s been in funeral service since 1926.  She has been employed at Shackelford Funeral Directors in Savannah, Tennessee for over 40 years and currently serves as the manager there.  Any opinions expressed here are hers and hers alone, and may or may not reflect the opinions of other Shackelford family members or staff.

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