THE BLOG
09/09/2014 04:15 pm ET Updated Nov 09, 2014

What Alzheimer's Caregivers Can Learn From King Lear

Watching King Lear through the lens of an Alzheimer's professional is a curious experience. From the very first scene when the aging monarch -- the King of all Britain -- decides to step down from the throne and divide his kingdom among his three daughters by testing their love for him, I knew something was very wrong. Who in their right mind would put their children in that situation?

The answer, of course, is no one. As I watched the performance earlier this summer in Central Park's Delacorte Theater, I thought, The poor man is demented. And I braced myself for disaster.

Goneril, the eldest daughter, went first: "Sir, I do love you more than word can wield the matter ..."

It rang false. But, right answer, I thought.

Regan, up next, one-upped her sister, saying that Goneril "comes too short, I profess myself an enemy to all other joys ..."

Good girl, I thought, play along with him. That's what he needs to hear.

Lear, now very pleased, turns to his youngest and most beloved child and chides her, "A third more opulent than your sister? Speak."

Cordelia, angered by the game and by her duplicitous, scheming sisters said, "Nothing, my lord ... Nothing."

My heart stopped. I wanted to stand up, right there in front of John Lithgow, Annette Bening and the entire magnificent cast and yell, "1-800-272-3900! Call the Alzheimer's Association 24-hour Helpline. We can help you."

What ailed King Lear has been the subject of scholarly debate for centuries. As far back as 1866, author A.O. Kellogg in his book Shakespeare's Delineations of Insanity, Imbecility and Suicide, opined that Lear's behavior could be attributed to senile dementia. H. Somerville, in Madness and Shakespeare (Richards Press: London, 1929) wrote that Lear showed "signs of mental deterioration due to old age." And as recently as February, British actor Simon Russell Beale said that medical research he did in preparation to play Lear suggested that the monarch could have been suffering from Lewy Body dementia.

Regardless of a specific diagnosis, if my 10 years at the New York City Chapter of the Alzheimer's Association has taught me anything, it's that communication and planning are key to helping a family deal with dementia.

The problem, in Lear's case, is not that he is asking the wrong question -- because there is no right or wrong question for a person with dementia. It's that Cordelia is not able or willing to see the question for what it is: the product of her father's demented mind.

Before Act 1, Scene 1 is over, with Cordelia now disinherited by a furious Lear, even the evil sisters recognize that their father is no longer their father.

Goneril says, "You see how full of changes his age is... He always loved our sister most, and with what poor judgment he hath now cast her off appears too grossly."

Regan responds, "Tis the infirmity of his age, yet he hath ever but slenderly known himself."

In professing their love as they did, Goneril and Regan were far more effective in controlling the situation than Cordelia, their underlying motivations notwithstanding.

As in any great Shakespearean tragedy, the consequences of Cordelia's words and Lear's reaction are devastating. At the end, the family members are all dead and the kingdom lies in ruin. And while today, such a dysfunctional family dynamic would not end in a tragedy of such global proportions, Alzheimer's can have an equally devastating impact on the personal lives of family members.

King Lear has many valuable lessons for family caregivers. Let's start with communication. One of the fundamental lessons that families must learn is: don't fight the reality of the person who is living with Alzheimer's -- even though their words can be hurtful.

Without warning, one day, my mother who was in the late stages of dementia, looked at me angrily and demanded to know who I was. I was stunned by her harsh tone.

"I'm your daughter," I replied.

Her voice was cold. "Impossible."

"Who do you think I am?"

"I have no idea." She raised her voice. "Where is my daughter?"

I could have yelled and said, What do you mean? Who am I? I have been your daughter for more than six decades. I have been breaking my back taking care of you for years. But I didn't. Social workers had taught me not to argue. So I calmly said, "Your daughter is close by. You'll see her soon."

The lesson here, as it should have been for Cordelia is: put yourself in the mind of the other individual, however hurtful or crazy they may seem. Part of your job as a caregiver is to create moments of peace when there is agitation.

A second key lesson is: you must be prepared. Every day, I hear stories about children fighting over what dad would want. Who's in charge of his care? What do we do with his finances? Do we take extraordinary measures at the end to extend his life? How are his assets to be divided?

At the beginning of every family's Alzheimer's journey there should be a planning process. Key legal documents must be in place.

Oh, if King Lear only had a Durable Power of Attorney authorizing someone he trusted to make legal and financial decisions. Also critical is a Health Care Proxy giving one person legal authority to make important medical decisions. A Living Will is a good supplement to the Proxy. Signed while the person is still of sound mind, it allows a person with dementia to clearly communicate wishes regarding end of life care. And finally, a Will can help you divide the kingdom without bloodshed.

With help and information from the Alzheimer's Association, communicating with someone who has dementia and planning for the inevitable end can be a smoother process -- and one that avoids tragedy of Shakespearean proportions.