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Recognizing that the space between her world and the one she is slowly but surely entering is drawing closer, Pat Summitt, who has won more basketball games than anyone in NCAA history, stepped down as coach of the Tennessee Lady Vols last week. Summitt was diagnosed with early onset dementia last year, at the age of 58.
Early onset dementia attacks people younger than 65. Many are in their 40s and 50s, and some even in their 30s.
Alzheimer’s disease, a form of dementia, affects millions. The statistics are staggering: According to the Alzheimer’s Association, in 2011, 5.4 million Americans were living with Alzheimer’s; 15,000,000 caregivers provide 17 billion hours of unpaid care at home; Alzheimer’s costs the nation $200 billion annually, and someone develops the disease every 68 seconds.
If all the Alzheimer’s patients were placed in one state, it would be the 5th largest in our nation.
It is predicted that if a cure for dementia is not found by 2050, 16 million Americans will have some form of the disease, with Alzheimer’s being the most prevalent.
Life is by no means over with a dementia diagnosis. Like any good coach, Pat Summitt has a strategy to stay healthy as she faces Alzheimer’s. And her son, Tyler, also a basketball coach, reminds us that we can learn from those with Alzheimer’s. “Despite (it), she has stuck to her principles and stayed strong in her faith. Her confidence to be open about this disease has taught me the importance of honesty,” he said in an interview with Carol Steinberg of the Alzheimer’s Foundation of America.
Tyler is right: Victims of this disease still have much to teach us. Entering their world on a fairly regular basis, I learn from them.
And every time I look into their eyes, I’m reminded that the space between their world and mine is only the length of that eight letter word: dementia.
One, whose blank stare appears fixated on the other side of the room, no longer recognizes me.
Only several years ago he was in the early days of retirement. I remember him then, still robust, vigorous, and active. And today, I miss that wry, almost cocky smile of his.
“We love you,” I remind him.
“You’re a good man,” he says in a monotone voice with no facial expression.
I wonder if his answer is a standard response he learned years ago, like “hello,” “good-bye,” “how do you do?”
Stepping into the world of another, I ask this former leader in our church, “How are you doing?”
Without fail he answers the same: “Can’t complain.”
“Looks like you just finished eating. What did you have?”
Like a little boy who has been asked a question above his years of comprehension, he doesn’t attempt to formulate a response but innocently looks to his wife for the answer.
Down the hall, I step into the world of another whose life changed years ago.
Walking her to the dining hall, she surprises me. Instead of the same question she normally repeats over and over, “Where am I?” this time she asks instead, “Who put me here?”
Not sure of the answer and not wanting to agitate her with a guess, I appeal to the highest source possible: “The Lord,” I instantly tell her, masking my hesitation.
“The Lord,” she says, repeating it back to me, seemingly satisfied with my response, at least for another evaporating moment in her life, and then slowly, deliberately she declares, “Yes,” like a math student who has just discovered the answer to an algebraic equation that became suddenly obvious.
Walking out of their world, I get in my car, and as I turn the ignition, I ponder how the space between their world and mine is encompassed by the same love of the One who has us both in his caring hands.
In 10 Gospel Promises for Later Life, Dr. Jane Marie Thibault tells about a nurse’s answer to a dementia patient’s question, “Honey, what’s my name?”
After the nurse told her, the patient said, “Oh, that’s right! Half the time I don’t even know who I am!” Then, pointing to a cross on the wall, she said confidently, “But he does, and that’s all that counts!”
Indeed it is, no matter which side of that space you are living in.
Editor’s note: Contact David B. Whitlock, Ph.D., at firstname.lastname@example.org or visit his website, www.davidbwhitlock.com.