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Perspective is useful, of course: it's why very few people want to be eighteen again. But the other side is having so much perspective, it's hard to give a damn about anything happening here in the real.
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I just want to say this, he said, before we walk back to our cars. I know who you could be with. Someone rich, someone fancy, some guy your sister finds for you. But I know who you should be with. You should be with a guy who doesnt mind that youre smarter than he is, who doesnt mind that most of the time, youll be the main event. You need to be with a guy who supports how hard you work and wholl bring you a cup of coffee late at night. I dont know if I can be that guy, he said, tears in his eyes, but Id like a shot. We married.
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But I know who you should be with. You should be with a guy who doesnt mind that youre smarter than he is, who doesnt mind that most of the time, youll be the main event. You need to be with a guy who supports how hard you work and wholl bring you a cup of coffee late at night.
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Choosing to die and being able to act independently while terminally ill is a deliberately narrow opening. Many people cant get through it. They cant swallow well enough. They cant talk well enough. They cant hold the glass or mix the drink on their own. (Helping someone hold the glass is a crime in most of America.) People who do wish to end their lives and shorten their period of great suffering and lossthose people are out of luck in the United States of America.
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I dont want to end my life, he said, but Id rather end it while I am still myself, rather than become less and less of a person.
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Those neurons, the brains soldiers, march for years, from the time were born, through the byways of the brain, setting actions into motion, rolling away boulders of all kinds, and then, with Alzheimers, theyre blocked by trees down at one end of the road, dangling wires at another. Over the years, the brains soldiersthis well-trained and reliable army, which has done so much, on so many different terrains, gone high and low, swum, climbed, strolled, and marched to all the different destinations of the mindbegin to falter, long before outsiders can see the troubles. Eventually (five years on for some, three for others, ten for some), the obstacles cannot be overcome. Messages cannot be received.
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(What is the body? Endurance. What is love? Gratitude. What is hidden in our chests? Laughter. What else? Compassion).
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He says, I prepared some and then he squeezes my hands tightly and he begins to cry. I love you so much, he says. Thats all I can say. I love you so, so much and I will love you every day of my life.
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Middle-aged women are supposed to look for the safe harbor, for the port in the storm of life. We are supposed to look for the calm and the comfortable. You are the port in the storm. And you are the storm. And you are the sea. You are the rocks and the beach and the waves. You are the sunrise and the sunset and all of the light in between. I think I have more to say but I cant. We are holding hands, pressed against each other, holding each other up. I whisper to him, Every day of my life, and he whispers to me, Every day of my life.
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He wanted to be in the center of the city, in either the oldest or the most modern part, as
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he felt about a meal in a restaurant the way people feel about money and good health: always better to have it.
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would like to have some heartfelt, leaf-shaking conversations, the way I imagine some people get to, at the end of life. (I imagine this despite having sat at multiple deathbeds, at which there definitely were no last-minute confessions, assertions, or expressions of deep feeling. The people dying were often in pain and exhausted or heavily medicated. My father patted my hand and thought I was my mother. My mother grabbed my arm and said, Jesus, honey, do something about the pain. As my old man used to say, frequently, regarding my expectations: the triumph of hope over experience.)
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I could feel him through a glass and I was banging on it, screaming at him: Why is there a glass between us? Where did it come from? Take it down! And Brian looked at me with puzzled, irritated concern and said, in effect, What glass? And, Please, please stop complaining about this thing that isnt even there.
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you notes, and defended him against all comers. I was as good a parent as I knew how to be, because there was something about the job that mattered to me (well, not something: my own mother, who was a loving presence and a terrible cook but never protected me from anything or anyone, handicapped as she was by besetting anxiety).
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Every day is an up-and-down. (Roller-coaster ride makes it sound thrilling; it is not thrilling. The ups and the downs both hurt, its a mistake to scream, and nothing moves quickly.)
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One of his great pleasures is overdoing it with the groceries, involving several stops at little markets, cheese shops, the East Haven lady who makes her own Thai BBQ sauce and fries up a bag of plantains for him while he waits. At our old house, we had a refrigerator just for condiments. Even now, my older daughter always says, How can you be only two people and never have an empty fridge? Thats Brian, I say, buyer of burrata, soppressata, Meyer lemons, white peaches, Bentons ham.
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There are around six million people with Alzheimers in the United States.
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Almost two-thirds of these six million people are women. Almost two-thirds of the caregivers for those Alzheimers patients are also women.
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try hard not to say things like this, but every once in a while my need to prove a point, such a base and unattractive need, rises up and I meet it by telling him things that he doesnt need to hear.
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all happiness is fleeting, but I see now that there is fleeting and then there is the true and wall-like impossibility of ever experiencing this kind of happiness again, even once, even next week, let alone a year from now. Doors are closing around us, all the time.
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This is not true, that nothing bad will happen, and therefore not comforting to me. It leaves me quite alone with reality, but the way he feels is exactly what I want for him.
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couldnt understand why I cried nonstop during these phone calls. I was sure that Brian had Alzheimers before the MRI; Id thought, Its not a surprise. But it was a surprise the way every bad thing, even as you see the flames in the distance, even as the terrible thing is upon you, breathing in your ear, hammering on your narrow bones, is still a surprise.
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used to write copy. My boss told me: If you gotta say its upscale, it aint. My boss said, Its like that guy who tells you hes funny.
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We eat a couple of cookies in bed and I point out that theres been a change (not a bad thing but still) in Rachel Maddows lip gloss and he admires my keen eye and we brush the cookie crumbs onto the floor because no one is watching. I plump my pillow so vigorously, it knocks everything off my nightstand, and he laughs and says that Im a danger to myself and others. Those moments are all I want. I want a life of this. He sighs and I sigh.
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Perspective is useful, of course: Its why very few people want to be eighteen again. But the other side is having so much perspective, its hard to give a damn about anything happening here in the real.
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Were not here for a long time, were here for a good time.
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What Yvonne manages to do, in the days after Brians diagnosis and in the days after Brians death, is to locate herself exactly where all the guide-to-grief people say she should be. At home, by herself, with her daughters or with friends, she lets herself be a mother awash in grief. We have one brief phone call in which she weeps to me that she just wanted more of him, and I feel so much the same way that instead of comforting her, as I intended, I just weep with her and then we mumble our goodbyes into our wet phones. With us, and then later with me, she doesnt center her grief. Shes careful not to cry first or loudest and she rarely refers to her own loss. She is, as Brian says, a fucking class act.
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Im waiting in the living room, pretending and knowing that I will be caught and that I am not a widow, Im just a weeping and annoyed wife. Brian will be gone from my life soon, although I dont yet know how soon, and hes also still a man with a cold. Its a cold, not pleurisy, is what I think, even as I am tearing the fringe off a pillow at the thought of his not being upstairs any longer, not having a cold, not being a sick man than whom there is no one sicker, as I have said to him. One time, I said that I had friends with metastatic breast cancer who complained less about that than he did about his cold. And then he wont be there for me to say it to him.
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I married himdespite all the very good reasons that no one should ever partner up for a third timebecause early on, he reminded me of the best father figure of my life, my ninth-grade English teacher. When that man died, his friends (eighty-year-old poker buddies, pals from his teaching days, devoted former students of all ages and types) wept. He was old, fat, diabetic, and often brusque. Women desired him and my children loved him and most men liked his company a great deal. He was loyal, imperious, needy, charming, bighearted, and just about the most selfish, lovable, and foolishly fearless person I had ever known. And then I met Brian and found another.
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Were not here for a long time, were here for a good time. You can imagine how often he said that.
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Women in their sixties are twice as likely to develop Alzheimers as they are to develop breast cancer.
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