Pat Summitt is not gone. She’s free. The balloons were orange for Tennessee and purple for Alzheimer’s, and everyone who loved Pat held one by a ribbon while a lone bagpiper played. At first they were supposed to be released by her family, but then Pat’s niece Casey started handing them all around, saying, “Everybody is family,” which was so right and so true to Pat. The balloons rose together in a cluster fast into the cloudless air, faster than the hurt breath escaped your throat. Finally you had to shade your eyes against the sun to see them. A lone orange one started drifting sideways on its own, an outlier.
“That’s Pat,” somebody said, and everyone laughed.
It’s difficult to make sense of it: Last week, at the age of just 64, Pat was taken home and buried in the green pastures she came from. But that her death had a purpose she did not question. “There’s something more I’m supposed to be doing,” she said, just before she was diagnosed with Alzheimer’s. As if living a revolutionary life, changing everything for women and picking up eight trophies and 1,098 victories along the way were somehow deficient accomplishments. “You think there’s something else?” I asked her, incredulous. She said, “No, I’m serious.”
That something more, of course, was Alzheimer’s.
On the sun-struck but dark day of her funeral, we thought about what Pat would have said if she had seen everybody weeping. You didn’t go crying to Pat unless you were in real emotional trouble. Once, Pat’s former assistant Carolyn Peck started wiping at her eyes, upset over some petty team issue. Here’s what she got. Pat leveled her with those tractor-beam blue eyes and said in that unforgettable gravel-raked-in-honey voice:
“Toughen up, Buttercup.”
We keened with laughter in the churchyard over that.
It brought back just how strong she really was. The reminders of her strength were all around, in the fields she grew up in. She was strong enough to lift 60-pound bales of hay with her strapping brothers. She would work alongside them in the hot broth of a Tennessee tobacco-growing summer, and then at night would slip out to a spot on a small highway where the local boys roared down the two-lane in jacked up Cameros and GTs, drag racing. She’d borrow a set of keys and race against the fastest hot shots. When you asked her, “Did you win?” she answered with an amused shine in her eye, “Sometimes. And sometimes I ran into a ditch.”
But along with her swagger she had infinite depths of kindness and humility, too, instilled in that small brick church where she is buried, Mt. Carmel United Methodist. After the service there must have been 150 home-cooked dishes at supper; it seemed every neighbor in Cheatham County cooked something and brought it to church to feed the folks from out of town, pans of smoked chicken and fresh corn and beans, and platters of biscuits. And of course Pat’s favorite, homemade red velvet cake. The only thing I knew Pat and her family to be snobs about was cake. Once I watched her niece Tracy swipe a finger in some icing to taste it, and then pronounce, dismissively, “Bought.”
This was where Pat got her shirt-off-her-back generosity, which was really her main quality, far more pronounced than her ambition or fierceness. She’d do anything, for anybody. Pull over to help someone change a tire, not embarrassed to dirty her farm-girl hands with a wrench. Demand that the aging security guard at her condo in Florida come over after her shift for a cold beer, and then listen with unfeigned interest to her life story. As Pat’s great friend Ange Kelly, the soccer coach at Texas, said: “How many times was I taught by osmosis, just walking down a hall with her, ‘This is how you treat a stranger.’ ”
You couldn’t fail to remark on how gentle and deeply absorbed Pat was with the very old, or the young. “If you were elderly or a child, she was so drawn to you,” Kelly says. “She was interested in that — I think because it’s the purest form of life.” Pat had an undeniable habit of recruiting grandmothers. It was Chamique Holdsclaw’s grandmother who insisted she go to Tennessee. A young player might spurn her for another school, but years later if Pat met her again, she’d say, “How’s your grandmamma?”
In short, Pat was what she would call a good Christian woman. She was also no saint. The last time I saw her it was all I could do not to tease her one more time; I wanted to lean in close and whisper in her ear, “How bad do you want a cranberry vodka right about now?” Pat didn’t practice bumper sticker Christianity, plaque-in-the-kitchen religion. She practiced the real thing, and never once talked about it. She didn’t tell anybody to go to church. But if you ate with her you held hands and blessed the food before you took a bite. Long past the point that Pat began having trouble forming sentences, she could still say Grace. So when I leaned in, what I whispered to her was, “Thank you for bringing me closer to God.”
She was the most uncomplaining soul I ever knew. Her rheumatoid arthritis was at least as aggressive as the early-onset Alzheimer’s, and her surgically repaired knee from an old athletic injury was a source of agony. Once I sat with her in a medical office and watched a doctor stick a gigantic syringe a half a dozen times into that badly distended knee. He pulled out more than a six-pack of fluid. Four years ago after her forced retirement we sat on Alys Beach in Florida, her favorite spot, with our feet in the flour-soft white sand looking at the bands of turquoise water, and she announced self-consciously she couldn’t get up out of her sun chair without help. “I’m delicate,” she joked. “Not many people know that about me.” When I asked her how bad the pain was, she confessed it was seven on a scale of 10. Yet I never once, in all the years I knew her, heard her say, “Why me?”
“How come you never complain?” I asked.
She just shrugged and answered, “Because these are the cards I’ve been dealt.”
What is supposed to happen next? What did Pat want and expect the purpose of her death to be? After we finish buttercupping, what would she want us to do for her? I don’t particularly believe Pat died to speed a cure for Alzheimer’s. The cure will come, but it’s probably still a few years and a couple billion dollars in research away. Marvelous scientists like Dr. Rudy Tanzi are working feverishly at it, and needed no encouragement from her. We can’t do much about that.
Rather, I believe that Pat died to demonstrate that the day in, day out way we treat people with cognitive decline has to get better. You’d like to think that Pat got the kind of generous, sensitive care that she gave to others. But the fact is, she didn’t always, for the simple reason that not enough of that care exists. We can do something about that.
Martha Stettinius, author of “Inside the Dementia Epidemic: A Daughter’s Memoir,” observes: “A stigma remains that people with dementia are not fully ‘here,’ that they are no longer themselves. Caregivers often treat them accordingly — as a diagnosis, not a person.” Pat was just one of four people I know with dementia, and from what I’ve seen, across the board, Alzheimer’s care is a national scandal in our midst, yet few are willing to address it, because it’s just too distressing.
When a friend or family member is diagnosed, this is what you quickly learn: Once-brilliant people who still have vast reserves of brain cells are discounted, forced into retirement, and many are warehoused in facilities where the food is patently awful and the most meaningful activity is bingo. And we wonder why they decline so swiftly. Their care is infantilizing and schedule-oriented, with full-grown adults fed at 6 and forced to bed at 8, and when they can’t communicate as they used to we lack the imagination to try to find other ways to reach them, so their pain or discomfort often goes unaddressed, leading to interactions that, as Stettinius says, “exhaust, frustrate, and deplete everyone involved.” Creative new forms of care that can enhance quality of life — art, poetry, music and animal therapies for Alzheimer’s patients — are the rare exception. Ignorance about the disease is the rule. We give lip service to preserving dignity but devote precious little thought to the fact that the quickest way to rob someone of that dignity is to tell them what time to go to bed.
Exactly how is anyone’s health supposed to flourish in this situation, when we fail to ask a simple question: How would you like it?
And this is the good care. Depression and abuse of off-label overmedication to make patients more compliant is rampant — the mother of another friend of mine had to detox for a month from the Remeron and Depakote she was given at a high-end Maryland facility. The home care industry is almost completely unregulated. Anyone can set up a business claiming to offer “compassionate care,” without medical licensing, and charge $20 an hour for it — yet what may be sent into the home is an untrained blue-collar worker paid just $9 an hour for a 12-hour shift with no benefits. The Department of Health and Human Services’ National Center on Elder Abuse estimates that close to 50 percent of people with dementia will experience some kind of abuse or financial exploitation.
How do we treat people who are older and ailing? As if they are sentient and sensitive beings, whose life and belongings are still theirs? Or do we treat them as if they are husks, largely insensible and defunct and somehow a little less human, so it doesn’t much matter what their care is? The answer to that question happens to be the essence of Christianity. Pat herself never failed the test.
Various editions of the Bible tell me we are all vapor and so does Zen teaching. Pema Chodron and St. Ignatius are in agreement on this, as are all of the other preacher-philosophers I’ve spun through in a frantic effort to find some kind of spiritual Advil for the pain of losing Pat. She did not feel like vapor and neither does her absence. The only true consolation comes from her neighbor and friend Roger Cunningham, a local businessman and lay pastor who lived just down the block.
“Ask yourself, what do you think Pat would say if you gave her the choice, either to take this hit to make things better for thousands of other people, or to make herself more personally comfortable?” he said. “What do you think she would say?”
Pat took the hit: She went public with her Alzheimer’s and allowed us to watch its progression. Still, when I get to heaven, after hopefully riding the up escalator instead of the down — and it’s by no means a sure trip — I will ask with an accusatory finger, “Why did you have to do that to Pat?” I can only guess dimly at God’s purpose in giving my most indispensable friend a blighting disease. But I think it has something to do with winnowing. You want to separate angels from chaff, just watch how we treat people with Alzheimer’s. The answer is, we’re pretty much all chaff. Except for her. Pat’s the only angel in the joint. This is what Pat wants, I am sure of it: to see that others get the exquisitely sensitive care she herself always gave, to her family, friends, and to perfect strangers.