Alzheimer’s Disease and Imperfect Sunsets to Life
The thing about doing what we who write and opine do is to keep up with current events and the news one has to intake a vast amount in order to fuel the output of writing. That means lots of reading, lots of filtering through the trends, narratives, screaming headlines, and subtle nuances of information that firehose from our modern technology into our brains.
And then, once in a while, you read something that stops you in your tracks.
The news that legendary singer Tony Bennett has been dealing with an Alzheimer’s diagnosis for several years, and the details written up in AARP by John Colapinto with the Bennett family’s cooperation, did just that.
But Tony was a considerably more muted presence during the recording of the new album with Gaga. In raw documentary footage of the sessions, he speaks rarely, and when he does his words are halting; at times, he seems lost and bewildered. Gaga, clearly aware of his condition, keeps her utterances short and simple (as is recommended by experts in the disease when talking to Alzheimer’s patients). “You sound so good, Tony,” she tells him at one point. “Thanks,” is his one-word response. She says that she thinks “all the time” about their 2015 tour. Tony looks at her wordlessly. “Wasn’t that fun every night?” she prompts him. “Yeah,” he says, uncertainly. The pain and sadness in Gaga’s face is clear at such moments — but never more so than in an extraordinarily moving sequence in which Tony (a man she calls “an incredible mentor, and friend, and father figure”) sings a solo passage of a love song. Gaga looks on, from behind her mic, her smile breaking into a quiver, her eyes brimming, before she puts her hands over her face and sobs.
The new LP offers lush, gorgeous duets, with both singers in superb voice. But there is one duty, in connection with the record, that Tony is manifestly not able to perform: promotional interviews. (When I asked him, “Are you excited about the new record with Gaga?” he stared at me silently.) This has left those in charge of Tony’s life and career — chiefly Danny and Susan — in a quandary. Eager for as many ears as possible to hear and enjoy what may very well be the last Tony Bennett record, they have jointly decided to break the silence around his condition, a decision they have, necessarily, had to make without Tony’s input, since he is, Susan said, incapable of understanding the disease, let alone making momentous decisions about whether to publicly disclose it.
Tony Bennett is hardly the first celebrity to deal with Alzheimer’s. Recently the late Glen Campbell went public with his diagnosis and even did a farewell tour performing as part of his six-year fight with the disease before passing away in August of 2017. President Reagan might be the most high-profile of Alzheimer’s patients, having gone public with his diagnosis in a letter to the American people in 1994 that marked the end of his public life and the start of his very private illness for the next ten years until his death in 2004. That letter ends with the phrase “I now begin the journey that will lead me into the sunset of my life” that has always stood out. For the nearly six million Alzheimer’s patients in America and their families, that journey is more often than not far more anonymous to the wider world, brutally isolating, and gutting in the ravages of a disease that takes away their loved one long before death comes for the body.
All death is certain, of course, but an Alzheimer’s diagnosis is among the more trying of ways mortality comes for someone. There are stages to the illness, starting mild and gradually getting worse. Like many diseases no two cases are ever exactly alike, and for all the suffering the patient does the burden on the families and caregivers is just as hard. The confused stage as the mind starts to go and the present reality starts to splinter into not-quite-connected moments of time. Caregivers and loved ones often think the angry and violent stage that comes is the worst, when someone you have loved all your life not only doesn’t know you but sees you as a threat. But it isn’t the worst. The worst comes after that, when the silence sets in, and the eyes go blank, and while the technicalities of life like breathing are still there it becomes brutally, painfully clear that the earthen vessel might be sitting there but the person as you knew them is no longer inside it. The feeling of helplessness of the situation, coupled with certain death to follow, is among the greatest of trials of loving someone in this life.
Cognitive disorders have long plagued my family. I know those stages all too well, having watched my own Uncle Art who lived beside us Up Yonder, a gentle, funny, prone-to-pranking people man who everyone loved, go through that process to his sunset in life. A retired miner, it would fall to him to give me a ride home on early out days from school, and he would swing by Dairy Queen and shout at the menu that he needed “One frozen custard” in his old school way to the befuddlement of the poor teenager who couldn’t quite figure out he meant ice cream. I thought of that often over the years, and in a weak moment as he sat in his chair by the wood burning stove frozen in his own body and staring at nothing toward the end I had to fight the urge to yell at him myself since I didn’t understand anything but the hurt and pain of seeing a ghost in a shell where someone I loved should be. The guilt of both thinking death takes too long but comes too early. The processing of things far beyond just what medical science tells us, questions about the very meaning of what is life, what is it to be human, at what point does either stop.
Like many other family members, those thoughts turn to “what if it happens to me”. I try not to think of such things, but having friends who are professionals, I sometimes I can’t help but ask them questions. How family history affects things, how I already have diagnosed cognitive decline from a TBI, other neurological issues, and poor health in general. It’s enough of an issue that recently while trying to figure out a new wrinkle in some neurological problems I’m having my excellent doctors felt the need to rule out early-onset Parkinson’s, another brutal illness that also rips your body’s ability to function away before taking your mind. The picture I use in my public writing and as my Twitter avatar, the reason I’m dressed up in it, is because we had just taken the family photo after my Uncle Denny’s graveside service in Clearwater, FL, back in December of last year. A legendary man with a lifetime of exploits, worn down to a shell of himself by Parkinson’s to the point that death felt like a freeing mercy. Despite doctors assuring it’s just checking off a box just mentioning the word brought all those thoughts rushing to my mind, both the fresh ones and the old lingering ones.
Death is death, but seeing a pattern of suffering associated with it in your own family has a way of cutting through the poetry and fancy words we couch eternal concerns with and makes you face the stark reality of such things. There is no lyrical poetry or clever turn of phrase to gussie up Alzheimer’s. There is no raging against the dying of the light, or a proud shuffling off of the mortal coil. Alzheimer’s is a predator that mercilessly and with machine-like inevitability seemingly finds every corner of someone’s humanity and grinds it to dust just because it can and you can’t stop it.
You feel selfish taking such suffering of another and then turning to worrying about yourself, but you can’t help it. Having been as close to death as you can get in this life without actually committing to it, I can honestly say I don’t fear death much at all, secure in my faith and in knowing all sentences must have a period. But becoming a burden to my family or others I do fear, losing my mind scares the hell out of me, and knowing the thoughts and feelings I went through growing up with a loved one slipping away in front of our eyes is something I really don’t want my children and friends and family having to do with me. It’s a near-universal concern to those with Alzheimer’s, from Reagan’s own farewell letter wishing to spare his own family to everyone else, the realities of just how hard the Alzheimer’s journey to the sunset is becomes the story for those living it.
I’m glad Tony Bennett is getting to sing this one last time as his journey to the sunset looks to be in full swing. I’m sure seeing him live with Alzheimer’s as best he can will inspire folks. I hope that voice that we all know so well can last a little longer. But I know that is a hope against hope, and the voice that will live on in recordings will be silenced soon. What I don’t know is fully how to feel about it, despite having first-hand experience with Alzheimer’s, despite knowing how life and death work, despite the fact that for someone as well-known as Tony Bennett his legacy is secure, and he will be listened to and enjoyed for generations to come.
Because like watching a sunset where my family gathers Up Yonder on the top of the mountain, just beside where Uncle Art lived, how you feel about it is going to be part of that moment, as the only part of the event that you can try to control. The sunset is coming for us all, imperfect as it may be, and there is nothing you can really do about it other than try to find the beauty in it, appreciate that you get to see and understand it, and hope it isn’t the last one.
My Dad died of ALS…pretty much the exact opposite. I’m not sure which is a greater hell to experience. I do know that my dad promised his wife that she would not come home to find him dead by his own hands. I’m not sure I could make that same promise seeing what he went though.Report
You do your relatives proud with your writing, even if we disagree.
And Lady Gaga did Tony Bennet proud with this too. Those of use who are discophiles will no doubt push this recording. We will remember him as he was.Report
I appreciate that greatly.
I was very moved by Lady Gaga in this pieceReport
The article was exquisitely written- I have no doubt the Bennet family is not regretting their courageous decision to go public with his affliction.
I had no idea that Gaga had sung with Bennet- a quick youtube search blew my socks off on the subject- remarkable pipes, impressive versatility and astonishing energy with Tony. She comes off deeply human in the article as well.
Alzheimer’s and Parkinson’s shredded my Grandfather between them like a stick in a woodchipper. I can’t even claim it as tragic because the devastation was so savage and swift. The poor man blamed himself for my Grandmothers death of lung cancer and seemed to greet the two diseases with guilty open arms. I strongly suspect that I am genetically destined for a similar fate one day God(ess?) help me.
You have my sympathies, Andrew, and my commiseration. I envy your faith and hope it will give solace when that dire time arrives but I hope that it takes many, many years, decades, (centuries!) to arrive.Report
Andrew,
Beautiful.Report