Quality of LifePosted: July 24, 2015
There is a formal “DNR” and “DNI” order for my 96 year old father in his top dresser drawer. My father, a widower, has no physical ailments. He walks at a brisk pace in Central Park most days. He sits on the park bench dedicated to him by my mother, or by the pond where sturdy, remote-controlled sailboats crisscross the water at the hands of children, including my father’s great grandchildren.
He frequently has lunch at Three Guys on Madison Avenue where he prefers the salmon, and an occasional gelato on 73rd Street. He walks six blocks to a barber for a haircut and a shave once a month, and usually enjoys a good nap in the chair. He is genial to the doormen who staff his building and to callers at his apartment. He rediscovers the Frick Collection periodically. And he muses aloud: “How different I have become.”
I speak to my father almost daily by phone and, twice a month, I travel by train to New York for a couple of days visiting him and tending to his affairs. He calls me by my name – or nickname – and knows my voice. But, I’m told, he sometimes calls my niece or my daughter, and perhaps others, by my name in person. They are all lovely women so I take no offense at this – or when he refers to one of his nurses as my mother.
My father has Alzheimer’s Disease. His disease had progressed inexorably, but slowly, for at least ten years, though diagnosed only six years ago. But he insisted on living alone, taking the bus daily down Fifth Avenue to his office, and returning up Madison Avenue on the M2 each evening. Then he fell at home, wounded his head severely, spent a week at Weil Cornell, and returned to his home with 24 hour LPNs, a team of four outstanding women who alternately spend their days and nights caring for him, catering to him, encouraging him, chatting with him, soothing and assisting him. He pores over the New York Times, and occasionally reads the headlines to me. His office has been moved to his apartment. The Executive Director of his Foundation reports to him almost daily on her activities. He converses with her with the same inflection and tones as before – but a third of the words and expressions are fabricated.
My father often doesn’t know he is home and frequently talks of going there, scrupulously writing down travel schedules. He cannot remember what happened long ago, or five minutes earlier. But sometimes he walks through the apartment turning off lights, just as he always did when I was a child. He can sign his name, use chopsticks and occasionally bring tears to my eyes by saying, for example, “We love you with a mighty heart.” Some months ago he said, “I feel like I’m losing my earth” which made me weep. Since then, he seems comfortable with where he is on this earth most of the time, but he falls into startling introspection sometimes, saying “I feel like the person I was didn’t exist.” Another time he observes, “I am not living my life purposefully.” These moods, like his evening angst, pass.
My father never weeps; he complains of no pain and appears to have none. His prescriptions are few. He watches Jeopardy and Lawrence Welk re-runs on television, and listens to music. He was fascinated by the gay marriage decision of the Supreme Court, observing that it “changed the position of the man and the woman.” In-home concerts by students awaken his mind and provoke his trademark cross-examination style of conversation. He responds to phone calls with animation, as if a reset button has been pushed in his mind and he knows all the right words and phrases, and even questions to ask of the caller whom usually he doesn’t know. This can last for two or three minutes before his brain seems to exhaust his supply of pro forma remarks and defaults into largely unintelligible or circular conversation. Last night, as he elaborated on a business deal he had in the works for which there was “uncertain enthusiasm,” he noted it would be necessary to “squeeze the lettuce.” I agreed that was sometimes necessary, but I thought he would, as usual, move past that point with his negotiating skills. We discussed the prospects for 25 minutes, different from conversations of past years only in that the deal terms were, like the words themselves, wholly fictional.
His conversation is most meaningful when devoid of facts and information. My father can still volunteer meaningful insights in a conceptual discussion. “Life is about asking questions,” he announced recently, as we discussed “curiosity,” a characteristic of his. Sometimes, he noted, the answers prove to be a “waste of time;” sometimes they lead to more questions. He does not recall this discussion now, of course, but it absorbed both of us at the time. I reached for questions that might inspire his insight; he searched for words to articulate his thoughts. But clearly, we both understood for a time what we were discussing.
This is not unique, though it isn’t daily. His understanding and his engagement with others vary from day to day. He can be startling aware and insightful, clear-headed and funny. Talking with my brother about what some might call “personhood,” he mused “I think I reduced myself from one thing to something else.” But occasionally he reminds us – and perhaps himself – “I think within myself I made a fair difference.”
I take my father seriously in all of this, as well as in more random, nonsensical or obsessive conversation, whether I understand him or not. Frequently he will laugh at his own joke or mine. We always agree to discuss issues further tomorrow, and not to worry about it this evening. Sometimes when I ask how his day was, he answers “I had a great day!” Other times he simply says he doesn’t know what the hell he did. Both seem to be honest answers. Rarely he seems disconsolate, though sometimes lethargic. Last night, he told me he was “irritating this very nice person” who was helping him and we all had a laugh. He doesn’t recall the names of the women who have cared for him for over a year, but he accepts their care with grace or irritation, depending on his mood. He occasionally issues them orders, just as he used to – “let’s get the check and get the hell out of here.” And he can sing, word for word, all of the verses of A Monkey’s Tail and Lazy Bones, songs he taught me when I was a toddler. He is, he assured me one night last week, “consciously content.”
This is how my father lives in the Alzheimer’s stage of his life. Had I described it to him two years ago, he surely would have suggested that I shoot him – he was very worried about “losing his marbles” as he put it. If you put the same question to me at that time, I would have said the same. I signed the DNR order with confidence that it was right and that it was what he wanted, because I did not want him to be resuscitated, intubated and taken to the hospital with painful broken ribs, hooked up to the machines he found sheer torment. I did not want him to experience the fearful disorientation of simply being in an ER or hospital room. And I did not then believe we should prolong his life, given “quality of life” issues explored thoroughly with doctors and observed personally on the front line.
I still believe that resuscitation and re-hospitalization would be cruel to him and cause him to suffer physically and mentally irreparably. So I have renewed the order, as required, in the belief that it is the right thing to do, and knowing my father attached great importance to doing the “right thing.” But I no longer am so glib in my assessment of quality of life and I no longer believe that the wishes of my father from a time before he had experienced his current life are dispositive.
Quality. Of Life. How do we measure it? I once helplessly watched a friend deliberately starve himself by refusing all food and drink in any form. I thought he had made a wrong choice, that medication could have relieved his pain and depression, good care could have given him some mobility, and his books and pen — the essence of his life, I thought — would have been his companions. He thought otherwise. His life did not meet his criteria for living.
My father’s situation differs from my friend’s. Perhaps some day he will communicate that he doesn’t wish to live, but that day is not now. I have no wish to anticipate that day. I would rather try to understand how far we can stretch his consciousness, his pleasures in food, music and company, his intellect, his love, his social interactions. His resources, family and friends assure that he has a quality of life in each of these strata, though sometimes we must look or probe carefully to perceive it. It is measured in the collective moments when he muses, or laughs, studies or scarfs down a brownie in one bite. For every time I wonder, “Do you remember that you love me?” there is another when he strokes my hand and calls me “ol’ Quacker,” the nickname he uses for me only. These moments have a short half-life. The persistent circumstances of his life – a walker, fractured words, thickened liquids, a minimalist memory, imbalance, confusion, nursing assistance – are on the other side of the ledger. They are very real, but they don’t outweigh the rest, not to me, and not to him. I hear you had a good day, I said to him recently. “I didn’t have a good day, he replied. “I had a DAMN GOOD day.” Emphasis in the original.
Today, for now, my father has a good life of its kind. It’s not one he would have chosen. But I believe he chooses it now. I sat chatting with one of my brothers recently under my father’s gaze. My brother paused and asked, “Can I get you something Dad?” My father swept his arm through the air, from one side to the other and replied, “I have everything I want.”